FEAR NOTHING.

Celebrating Angel's life

2008-05-13T14:46:00.000-07:00

I miss you so much Angel Valentina......

2008-05-10T13:27:00.000-07:00

......and you will always always be on my mind, in my heart, soul, and spirit. you gave me the best tens years of my life. your attention to me were filled with huge amounts of smiles, laughter, support, surprises, and love that will never ever be replaced.

last thursday night i held your hand and spoke to you softly while you were laying here at home comfortably and pain free. i felt your spirit release from all the pain. i am saddened and torn beyond words that you are no longer here, but i feel peace that your mind and body are now at rest.

you will always be with me, i will love you forever,

i am only yours........XOXOXO-'Bun'

Angel's memorial service will be held at:
Seattle University Chapel of Ignatius
Wed 14th, 2008
5:00 pm, followed by a reception.
Please bring along any fond memories you have of Angel, you'll be able to share them with everyone at the reception.

Please keep yourself updated in the next couple of days and weeks for more information on this service and for the service that will be held in minnesota.

one door shut, three doors open....

2008-04-29T13:18:00.000-07:00

on monday dr. otero spoke to angel with the utmost compassion and through many tears of his own, that he felt chemotherapy is no longer an option for angel. the chemo is only making angel weaker by the day without the benefits. yes this was tough news to hear, but it was something we felt could happen on this day. we see it as an end of a phase which opens more doors for the next. this has truly been a positive unfolding of events. our spirits are high, i promise.

i've arrangements to see a naturopathic oncologist named dr. lucas at seattle cancer wellness, who specializes in eastern medicines, and holistic approaches which includes acupuncture, herbs and chinese medicine, juicing, etc. seattle wellness leads the nation in this practice, and i am excited to learn more. we are also moving forward with macrobiotics, something that was not recommended during chemotherapy, but ready to jump head first the minute this option was available. i planned on heading out east next week to the kushi institute where it all began, but during my research i came across gabriele kushi who to my total surprise lives in minneapolis. she is a family member of michio kushi, the man who brought this way of life to the western world. she has been teaching kushi's way for years. i've been in contact with her already and she will device a diet that is most effective for colon cancer. a visit back home to see my grandmothers and great aunt will be icing on the cake too.

macrobiotics isn't too much a stretch for me and angel, we have eaten much of the food already, and luckily i know how to dice and slice some mean vegi's, and working from home has been invaluable to help make this happen.

angel is ready for this, we've all been ready for this point. the doors are wide open and we can finally walk through them and explore. we are most definitely not going into this blindfolded, there have been wonderful results with alternatives, and i have faith we can find a balanced that will help angel.

our support system is more than eager to take this next challenge head on without looking back.

more of the same

2008-04-23T13:08:00.000-07:00

last monday dr. otero decided to stop the cetuximab antibody therapy and switch to panitumumab. we'll see how she reacts. the cancerous fluids in her abdominal cavity is worse than we thought it to be. tumors so small that ct scans can't detect is causing fluid build up and of course tag teamed by the liver as well. angel's magnesium levels have been critical, so the past three days she's had daily infusions, a quart per visit. two more to go this week. she had another paracentesis yesterday for some more comfort. three quarts this time. she is considering to have a port placed so we can drain the fluid at will. dr. otero said that there shouldn't be any clotting complications, but the fear of infection is always present. clinic visits aren't troublesome for me, but perhaps for angel's energy level, the port might be a good alternative. i still can't believe all of this is happening to my best friend.

angel's appetite is still an issue. she knows she has to eat, she tries really hard like with everything else, but it's just too difficult. small meals (bites) and small 8 oz smoothies is mostly what keeps her going. i have terrible butterflies thinking about everything, it seems so much for one person to handle at times, but i'm not alone. people ask me "how do you do it?" i reply with all i know to be true "i do it because i am trying to preserve my future and everything i've wanted in life." anyone would do the same in my situation. my support is incredible and whom have been heavily involved since the diagnosis.

renae came into to town a few days early to help out and just be. we all realize that this week will be very stressful and another helpful hand will be of great help. angel's god brother matt and his fiancee will be in town this saturday for a few. his energy will no doubt spark some life into the weekend.

we meet with dr. sam whiting at seattle cancer care (UW) tomorrow morning to make sure everything that can be done is happening. regrettably, i fear dr. otero is doing everything possible. but maybe sam has a trick or two.

ascites

2008-04-18T14:19:00.000-07:00

the relief of the paracentesis was short lived. the following morning, angel and i could both see the ascites had already started to come back. also the lack of appetite and slight pain has returned that's associated with this effect too. we'll schedule another paracentesis next week, and monitor angel's pain until then.

the biopsy on this fluid came back positive for cancerous cells. hard news to swallow. i'll need to ask dr. otero whether this cancer is new, or just residual from the tumors on her liver, or perhaps something new altogether. i'm not sure if it matters. this is a huge set back. this obviously worries us all, but will stay cool until we learn more about the cause and effects of this.

on monday, angel will switch to a brand new monoclonal antibody named panitumumab. it works much like the cetuximab and prevents further tumor growth. i'm not sure what the following week will be like, whether she'll continue with the full regimen or not. her bilirubins have climbed week by week, and a tint of yellow is visible in the corners of her whites. no answers yet, but will make certain to fire away with quesitons on monday.

renae comes into town next friday, i hope we can give her some good news about moving forward with UW. angel has been reluctant about leaving the incredible dr. otero, but now feels it's time to move on to specialists. her loyalty to otero is strong, but she knows being loyal to herself is foremost. we're not looking for a miracle (maybe a little), we know the gravity of the situation, and being with specialists brings a little bit of lightness. we hope that their experience with colon cancer will help angel be in less pain if/when new things arise.

sorry for the straight forwardness. i don't enjoy bummer posts like this, and relieved that i've finished this update. moving forward.

paracentesis

2008-04-16T14:07:00.000-07:00

all the pain angel has endured the past three weeks has finally been alleviated! a very non evasive procedure called paracentesis was performed. the pain and aching was due to an overflow of fluids the liver wasn't able to process, and dumped into her abdominal cavity causing her vital organs to squeeze together. a total of about a gallon and a half was drained. it was quite amazing to see her belly go down after each jar filled. after the second, angel told me how hungry she was. we'll keep her on a soft food diet until we can meet back with dr. otero to go over the game plan.

we'll enjoy the next couple of days while they biopsy the fluid. she's napping tight right not, and plans to get out of house and catch up on activity is planned for the next couple of days. i also see this as a window of opportunity for myself to get some much needed work finished and possibly even a visit with emmanuel to cut my nappy hair off.

The Kanzius Machine

2008-04-13T19:50:00.000-07:00

this is amazing and worth the view! it's hopeful, and something to keep an eye on. wow!

http://www.cbsnews.com/sections/i_video/main500251.shtml?id=4011961n&channel=/sections/60minutes/videoplayer3415.shtml

the weekend

2008-04-13T15:20:00.000-07:00

angel was discharged from VM on friday with mixed answers about her distended stomach. this really frustrated angel, spending a week in the hospital to only leave with worsened pain and a prescription for more pain meds. angel and i spoke last thursday about finding a GI oncologist who specializes in colorectal cancer. as much as dr. otero and his team are amazing, their primary focus is head, neck and hard tumors. a week ago, dr. otero said it might take him three months to diagnose this new pain, and we've decided that is too long. we missed the appointment again at UW last wed (the first miss was due to another hospital stay), so we'll reschedule it. i know that the GI doctor we meet with (i hope it is sam whiting, he is anita mitchell's doctor too, and is also a huge advocate for colon cancer. i've seen him speak twice in the last month) he/she will tell us the same news. this cancer is aggressive, and that the dr. otero is doing everything we would do. but we are hoping the gang of specialists who focus primarily on colon cancer, will know how to help alleviate this pain and any new pain angel might experience.
i attended a seminar yesterday morning at fred hutch, a national tour the colon cancer alliance organized. i met with two new people who are in remission. ann from stage III and laura from stage IV. i told laura about angel's new pain and she said it could be xxxxx (hopefully she'll email this xxxxx to me tonight so i can bring it up with dr. otero) laura asked me to have angel call her too. this club no one ever wants to be a member of has been so generous to me the past few months. online and off. again, i want to advocate. i want to give back. i want to learn everything that i can about colon cancer. i don't fear this disease as i once did, and with the knowledge, support groups and people i have met, i have become the strong advocate for angel as she would be for me if the roles were reversed.

i spoke with amber today about the upcoming fundraiser for angel's cancer fund. it sounds amazing. they have the venue already and have scouted local business for donations for the silent auction and raffles they have in store. four bands are performing too. it's very cool that a lot of angel's friends from high school and beyond have surfaced out of nowhere to help out. angel's god-brother brian is spearheading this fundraiser as he did so well last month at another one which raised a good sum of money. i can't thank them enough. the outpour of love and hard work is astonishing. you can check out some pics from last months fundraiser here http://3.bp.blogspot.com/_Em4tIxBQS04/R_0qP3MshzI/AAAAAAAAAK4/Ds3RQfXIT20/s1600-h/collage.jpg

i saw the dalai lama yesterday with some friends who had spare tickets. stephen called the night before and asked if angel would like to go, he said that he would carry her on his back if need be! karma-love all around. due to angel's pain she reluctantly opted out. the dalai lama was amazing, he is so gentle and genuine. the parade of cultures merging together, wearing their traditional clothing, formed a smorgasbord of colors showing off how different we all are, but how we can live amongst each other in peace. i welled up several times thinking about how much angel would've enjoyed this. she is constantly on my mind as many of you experience.

tomorrow angel has her full load of chemo, or as her friend jeffrey calls it 'whack therapy'. he is also fighting colon cancer, and fighting like mad too. he is on the same regimen as angel, including the weekly infusion of cetuximab. dr. otero is back from vacation and angel is excited to see him and hopefully get some real answers about this new pain.

pain control @VM

2008-04-09T11:05:00.000-07:00

we went to the clinic last monday as planned for the weekly cetuximab infusion, but the ever so diligent dr. otero forgot to order the medicine before he left town. oops. no biggie, so instead, we met with dr. pinder and went over angel's pain and discomforts (which at points reached to 8 of 10 on her pain index. we know that she can handle a lot of it too. i would most certainly fold at 3). dr. pinder thought angel should go ahead with a colonoscopy and let her decide whether she wanted to stay on the 15th floor for the prep or do it at home. she opted for the former. good choice. so, we've been here since monday night, and plans for discharge is for tomorrow or the next day after.

in the meantime, angel's pain has worsened. her abdomen is distended, a lot like it was last january, except there is much more pain. no one has come up with a clear answer for this pain yet. she's been on a breakthrough morphine drip, and is upped to 30mg of oxycodone 2 x day. the past fews weeks, it's been about balancing the management of pain and not being drowsy, but we've learned you can't have one without the other. this is really frustrating. getting food down is still a problem, and worsening. the doctors reviewed the ct scan from yesterday and could not see an obstruction, or twist. the floor doctor thinks the liver is pushing up against the bowel causing a small blockage, but he's not certain.

dr. malpass has taken over while dr. otero is on vacation. he's been a comfort in the midst of many visits from strange doctors who are meeting and learning angel for the first time. most ask the same questions, and perform the same abdomen tapping checks, and then leave the room without any answers. on tuesday, a squirmy looking stomach doctor came in for two minutes and abruptly left the room, we never heard back from him, but i'm sure i'll see his charges on the next regence EOB. he must've been short on rent this month.

dr. malpass and the GI doctor decided not to have angel undergo the colonoscopy after all (lack of evidence from the ct scan) fearing a tear or bleeding could cause for things to get out of hand. one of the monoclonal medicine of avastin cuts off blood vessels feeding the tumors and other places, and if a small tear should happen, it may never heal, and become a nightmare.

the cetuximab is ordered for today, and hopefully by tomorrow we'll be on our merry way to fend for ourselves.

the past week

2008-04-07T11:44:00.000-07:00

i can't believe it's been almost a week since my last post. people have emailed me wondering of new news and updates. this makes me think of the time (age 10 or so) when i took over my friend's morning paper route for the week. one morning i woke up an hour late. i couldn't believe how many people were up waiting and pissed off that their paper was late (years before the internet). i was so embarrassed, and maybe even a little scared, that i couldn't finish the route done fast enough. everyone loves their daily dose, and i won't let so much time pass again.

i've had some emotional ups and downs the past week. i had a spell of anxiety last thursday anticipating dr. otero's meeting with angel the following day. i worked myself up wondering why this appointment was taking place. he took angel's CEA count (tumor markers) last monday before her big infusion of folfiri, but they weren't ready as of 6pm that night. i felt suspicious since we usually get the readings the day of, and this suspicion manifested into fear that her CEA count was off the charts.

that night i attended a cancer seminar at fred hutch with roz (she recently lost her mother to cancer and has been gracious enough to listen and share her own experience with me, it's been a comfort), and met up with an amazing woman named anita mitchell (google her). we met last month at gilda's during a colon cancer awareness q&a with oncologist dr. sam whiting from the UW (i'm hoping we get him this thursday for another opinion). she is a survivor of stage IV colon cancer and has been in remission for a year or so now. her story is quite remarkable. as you know stage IV of any type of cancer is severe. anita is a strong voice and advocate for colon cancer. i want to jump on board and see what i can do to help advocate for people who are in my same situation.

i think i sort of felt this calling during the q&a portion. parents of a young man in his 30's has stage IV colon cancer (it's still shocking, diagnosed the same year he got married, bought a home and landed his dream), and they were telling and asking how they can help their daughter-in-law who is having a very difficult time of it. in this auditorium of 40 or so strangers, all linked by cancer. i spoke up and rambled about the struggles i have been experiencing and how difficult it is coping with a loved one at such a young age like ourselve. like most, public speaking can be terrifying, but confidence in the subject matter makes it less so (speech class is finally paying off) i have found groups out there for people like us, and shared it with the parents (youngcancerspouses.org). after the seminar i stayed behind and discussed further with the parents and anita. i learned that the son's doctor is otero as well, and they only had goodness to say about him too.

my anxiety fluttered away this night, i was feeling a high and a boost of optimism. talking about the experiences of cancer, and finding people who are also coping with it really empowered me, and made me less afraid. i want to return this same feeling to others. i feel like an old pro already, yet i know i have so much more to learn and experience on this topic.

the meeting with otero went well, and indeed i was paranoid. he wanted to go over this pain angel has been experiencing. she's once again doubled her pain meds, and is managing between controlling the pain and hallucinating. otero wants to go back to the drawing board and try to re-diagnose the pain in her abdomen, he's perplexed and says it might take him three months. so until further notice, angel will stay on her soft food diet.
otero also showed us the CEA marker count (i'll post this chart later today) her levels have dropped by nearly 200 points from 400 since she's been on folfiri. it is working, and another CT scan after the next couple of cycles of treatment will show which tumors are decreasing. we know from the last CT scan, that the tumors on the lung and lymph nodes are shrinking, i just have to believe that the tumors on her liver have gone down, if not just the tiniest bit the naked eye cannot detect.

of course this news is good, but we've put up our 'cautiously optimistic' flags until the next CT scan.

last thursday night, lindsey dropped off another bag of prepared food which we've enjoyed ever since. i blended the chicken noodle soup for angel which she really enjoyed, and also (don't gag!) the lasagna. it was angel's idea, but it worked. getting calories into angel has been a challenge. she foregoes her morning yogurt after two bites. her stomach is distended, but she doesn't seems to notice it as much as i do. that's probably a good thing.

susan arrived yesterday, and i think she's noticed the changes in angel's physical mobility and appearance. she is thinner than the last visit, and walks/moves around much slower. i don't see the daily changes as much, but compare by recalling her usual vibrant self from past months and years before the diagnosis. it makes me sad, and chokes me up, but this is what we should all remember her of, so when that day comes along she cartwheels past your slow ass, it won't shock you too much. angel's sharp wit remains, she still makes me laugh, and i still love it when she's bossy.

susan plans to buy some perennials for angel to plant around the house. i think gardening will be a relaxing and nice hobby for her to enjoy. i think she'd also enjoy some weeding and popping out the 1000's of dandelions in the yard, and mowing the lawn too. probably not.

today she has her cetuximab infusion and more labs. more progress.

NO NEW TUMOR!

2008-03-31T19:27:00.000-07:00

dr otero told us that they did not find a tumor in/around her uterus! we are really overjoyed, but at the same time a little somber. the pain angel is feeling is caused by a twisted or pinched bowel. she's been obstructed for the past two days and still having some issues. now that she has doubled her pain meds (causes constipation), she will do the same for the stool softener senna. angel will eat softer foods for the next week and see if this obstruction clears, because surgery is really not a feasible option while she is on chemo. i will update as things unfold. also, if you guys have any yummy and nutritious, softer types of food ideas, feel free to email them to me, especially morning eats.

i've gotta hand it to otero. this morning and hours before the MRI, angel mentioned some rumbling-grumbling noises in her large intestine (colon) area. otero used his stethoscope and listened for three minutes straight (renae was really impressed by this). he said it might be a twisted bowel. he was correct.

next, i've gotta to hand it to the gynecologist for jumping to conclusions and freaking everyone out. this is the second time someone has brushed off, or blamed something very serious perhaps due to angel's stage IV diagnosis. who knows, but now we know, and that's all that matters. angel can continue fighting the great fight she has been doing so well.

and of course, i'll hand it to myself too. way to go ben! thanks for scary the hell out of everyone. i am sorry ya'all.
we've done a fairly good job about not jumping to conclusions, and not to play amateur doctors, but rather wait for the test results, and call the clinic if need be.

anyways, i'm happy with this news, and that now i can be a good little listener tomorrow night at my support group, rather than talk about this mishap.

renea flew out tonight, and her return next month is a like a light at the end of the tunnel for us. her company was greatly appreciated, and we had a lot of fun together. angel misses her already.

paige (angel's childhood friend) flies in tomorrow for the day for a quick hug and kiss.

FULL OF FURY #6 eve

2008-03-30T19:15:00.000-07:00

we met with dr. otero on friday. long story short, an MRI is scheduled tomorrow morning before the chemo infusions. this will help determine the size and location of this tumor. if the location is unobstructed, he thinks that targeted radiation or radio frequency ablation can zap it away, or at least alleviate a lot of the pain angel is experiencing.

i know my last post was a little frantic, and might have come off as hopeless (thanks for the calls and emails) but the past couple of days i'm looking back to what angel has gone through and the battles she has won. also, we know the folfiri is still working, and this new tumor is just another hurdle. other things that are still going amazingly well is her appetite, her physical appearance, her sense of humor, her wit, she still plucks her eyebrows (which makes me feel like life is normal), she sleeps throughout the night, no nausea, normal bodily functions. dr. otero is reworking his offenses and we will hear about his new plans after the MRI review.

last night, our dear friends paul and carolyn from vancouver stopped by for the night. we had a lot of fun together, good food and much needed laughter. this morning, one of the first things angel said was how much fun she had, it was really nice to hear. dr. paul really boosted her spirits. i just can't imagine going through this without such excellent friends and family, all of you who are pulling for angel 1000%.

renae extended her visit until tuesday, and will purchase insurance on her tickets from now on.

i hope tomorrow brings a little bit of good news in the midst of the bad.

Second opinion on treatment

2008-03-28T13:34:00.000-07:00

we met with dr. gold at swedish cancer institute yesterday. he agrees with the treatment angel is receiving right now with dr. otero. we are reassured, but angel also learned for the first time (which was very painful) that the monoclonal medicines of avastin and cetuximab (erbitux) and the folfiri will stop working at some point. but when, no one knows. this really upset angel for obvious reasons, and we both sank into a deep depression. this news was probably the worst news since the diagnosis. i can't even put into words the dark days that might come ahead. i don't know if i should even be writing about this, but i feel the need to unload some of this pressure to whomever is reading (angel does not read this blog to be sheltered from posts like this one). it's just another realization that perhaps could happen. our lives and all of our dreams together seems it could come crashing down at any moment. i hope it won't for some time, and this is when the mantra 'live as if this is your last' really makes sense. it's so difficult to live everyday vibrantly with the thought of this on the forefront. i feel sick to my stomach that i have lived so many days for granted and i wish for them back.

i am sitting at a coffee shop right now and next to me is an asian woman with her beautiful mixed asian son, and can only think that that's what angel and i should be doing right about now. that was our plan last summer. angel should be here right now with deneen and zade, enjoying their afternoon together scheming our next trip, and share parenting tricks.

dr. gold hopes that angel is still healthy and everything is still working in the next two months, but the instance it doesn't, he has an opening for a new clinical trial that he's directing. this is a double edge sword. the new drug is in phase II, and will test toxicity and how much a person can take. it's so scary that she might need an option like this in the future. this drug they are testing is similar to the irinitecan (folfiri) and oxaliplatin (folfox) which will hopefully kill tumor cells, and if approved after all four phases have been completed, it could take years for it to be approved by the FDA. i think of all the people that sacrificed their lives for the drugs she's on now, and can't bare the thought of the reciprocal.

i just got some really bad news, angel now has tumors on her uterus! F*CK! the past week her pain has increased and has doubled up on painkillers. she had tests all week following her last CT scan when the large fibroid was discovered (again). i am livid. i am out of words. deneen is on her way now to pick me up to go to virginia mason. send your thoughts, prayers, anything good you can throw angel's way.

easter day & night

2008-03-23T22:33:00.001-07:00

some pics from today shot with my trusty camera phone.

[awake from a little nap. angel and pete]

[a hug from zade]

[a kiss from zade]

what a babe!

2008-03-22T19:56:00.000-07:00

angel met with the talented mr. emmanuel for a complimentary haircut (thanks emmanuel!!)

here are some pics to show off her new do. enjoy!

[one last look at her beautiful long hair, her dad would cry if he knew what was going on]

[hot hot hot, and so much easier to manage]

Renae's return

2008-03-21T12:04:00.001-07:00

renae landed at 9am this morning and will stay for the week. renae's reaction to the appearance of angel was wonderful. she thought angel had gained a little weight (one of several situations when this is a good thing!) and looked healthier overall. it's nice to hear this and to know that we've all taken such good care of her since renae's last visit when the poo was hitting the fan.
the other reason why i picked renae up was for the contents in her carry-on. my favorite south jersey hoagies from broders' cucina italiana (i worked there throughout my high school days) yum!

[south jersey hoagie]

the girls are at gilda's doing yoga right now, angel is really getting back into it. yesterday on the way home from her therapy session (which went great btw) angel was on the phone with her psychotherapist gang scheming to get back into the game.

[on the phone with marie, another co-op therapist]

she plans to attend her non-profit co-op groups again, and might even take on a co-op client in the near future. in the past few months angel has referred three new potential clients to her colleagues. she would've been at half time now, a full load is 20 clients per week. she said she'll take whatever life throws at her and will start from scratch if need be. it was really cool to listen to her talk shop and to know she is still on top of her game. at her wellness group last tuesday she brought up working, and how the other's do it. angel told me that most of the people in her group would have gone crazy if they weren't back at work and doing what they loved most. angel was in private practice for a short year, and she had accomplished so much. she knows others who have been at for years with only a few clients. mighty impressive.

[MRI split view, right side]

on health related news, yesterday we saw dr. taylor the neuro-oncologist. she told us for certain the appearance in her brain was indeed an old clot and not more cancer. she too thinks this happened over a month ago. she explained if it were a tumor, the contrast they injected into angel's arm would have glowed this area up, but instead it was dull and gray. the location of the clot is right on the edge of the speech area too, which strangely gives angel some reassurance that she wasn't going crazy and perhaps less chemo brain than she believed. dr. taylor said that angel's brain was beautiful (i thought this was hilarious) and that most people in her situation would have 80% function back within a year, which means angel will be at 100% by next month ;)

this weekend we are laying low and enjoying sunday with the shanks' and company. angel has her cetuximab infusion on monday and plans of returning the hospital bed are in order too. things are looking up.

have a good weekend everyone, peace and love.

Unhooked + CT scan + Sweet

2008-03-19T18:56:00.000-07:00

All went well today, angel was unhooked of the 5fu, and the ct scan results were negative for anything unusual. what dr. otero noticed has to do with her uterus and the fibroid lining, blah blah blah....i'll save the drama, anyways, all good, and pretty much what the doctors at swedish fertility clinic told her last november. she is relieved, and will manage it with painkillers once per month.
we had two hours to burn, so angel and i headed up to the 15th floor to visit the nurses. we saw candace, jenny and dana. they were all so happy, and couldn't believe their eyes at how well angel looked and sounded. i probably forgot to mention before, but angel's voice is much stronger, and i actually heard a couple of her normal laughs, you know, the good ones that come from the throat, i miss that a lot, but i know we'll all hear more of it.
it was a bit surreal to be on the 15th floor for so many obvious reasons, but angel was really happy to have done it. she plans to visit (on her own accord ;) in a couple of weeks once robin (her fav night time nurse) starts day shifts.

back at the clinic and once dr. otero noticed that angel was off her oxygen, he exclaimed, "sweet! sweet! sweet!" all smiles, and very happy for her.

we viewed a side-by-side comparison with todays scan vs. the scan from three weeks ago. though the previous scan had the contrast which shows more detail, dr. otero's trained eye noticed that the tumors were a teeny bit smaller! words can't explain the excitement. of course, there is so much more fighting ahead, but the smallest of improvements makes this process a bit more bearable.

it was about 4:30 by the time we finished up at VM, the day started at 8am for angel, and she wanted to do more!

[with lan, pike place market in back]

so we headed to cutters at the market and met up with alana and her seattle u classmates to celebrate the end of their quarter, and also to relish in the fact they graduate after the next one! it was a lot of fun, and angel was having fun. she was incognito, and mixed in well with the other diners. she's been embarrassment at times wearing her oxygen in public. she used to asked me if i was embarrassed by this, i'd say "no", and then follow with "just tell people that you prefer only the best air, none of this free cheap crap!"

guess what angel is doing right now? !zzzzzzzzzzzzzzz'ing!

Gilda's Club Wellness Groups II

2008-03-18T22:17:00.000-07:00

another great night of support. angel was most impressed with her group this week, and i was impressed by her strength to make it for the two hour event a day after her full load of treatment...butt kicker!
she is still doing well without her oxygen, and i must add that i was getting so used to seeing her nasal cannula on, but now that's off, it's as if she is missing something, like a freshly shaved mustache, which angel thinks is hilarious.

angel had a really good day, it actually started off badly, an appointment with the neuro-oncologist was cancelled this morning due to terrible stomach cramping. angel feels like the source is her right ovary. dr otero wants to eliminate kidney stones, so another ct scan is set for tomorrow morning. she will get unhooked of the 5fu afterwards too. she'll meet with dr. taylor (neuro-onco) on thursday to go over her MRI in detail and preventative medicines to prevent further clots.

after gilda's, angel ate her tempura rolls, still a staple, and we discussed the night and what it brought to the both of us. we also talked about camping this spring/summer and other short weekend trips. it will be so much fun to get out again. what freedom! when she was hooked up to the oxygen machine, it was such a drag. now she's on wifi oxygen and can now roam freely ;)

FULL OF FURY #5

2008-03-17T09:56:00.000-07:00

[angel's new boyfriend dr. otero. i think they've been dating for a couple months now ;)]

[testing her oxygen saturation without using oxygen. walking with nurse carol]

[after 20 minutes of walking around, saturation is 97-98%, carol's and mine read 98. goes to show what a tough cookie angel is]

all good to go for treatment today. we met with dr. otero for a while, explained some new pain angel has been experiencing, he's aware of it now, and we'll stay on top of it. and of course the thumbs up to kick the oxygen tanks to the curb (we'll have them around for as needed basis) angel is stoked, and is calling everyone she knows! i am so freaking happy too. another victory for angel!

[saturation check after more than 7 hours later, 98%!]

MRI results

2008-03-14T12:53:00.000-07:00

[happiness = eating]

once again the look on dr otero's face said it all. the team of doctors feel confidently the appearance is not cancer, but rather an old clot that formed no less than three weeks ago (before the echocardiogram). he showed us the MRI, and we asked a load of questions. the clot was on the left side, and about an inch above her eyebrow and back towards the ear. another MRI will take place four weeks from now to hopefully rule out cancer 100%. so basically, angel had a stroke at some point in the past month and didn't even realize it. kind of scary huh? another bullet dodged. i am so happy of the outcome. under this circumstance, having a clot is what we were all hoping for. how messed up is that? thanks for the prayers, positive thoughts, chants, and squeezing the puff balls ;)

last night and this morning, we both had a rough go at it. this was the first time we experienced the potential of something going badly alone, and not in the hospital surrounded by nurses, doctors and our friends. we were not the most effective team at points, but we got through it. if something like this happens again, i think we'll both be on our best behavior.

we also discussed the big clot in her lungs, and the possibilities of having surgery to remove it. dr otero explained that the procedure is risky, and chemo treatments would have to cease for at least four week to allow for healing. before he would even consider this though, the tumors would have to decrease enough that in the likely case they grow back, it would happen during this healing time, at which point (in the best case scenario) we would be back to square one once again. so, the oxygen doesn't look too shabby now, and patience seems to be the best course of action.

a neuro-oncolgist visit next tuesday to discuss preventative options for brain clots.

folfiri on monday.

today i am going to enjoy a lot of free time and do absolutely nothing. for once, feel really good about reveling in thoughts of how it could've been.

MRI

2008-03-13T15:44:00.000-07:00

it seems the MRI on her brain revealed an 18mm 'appearance'. they are not sure whether it is cancer or a blood clot related to the new clots on her kidney and spleen. dr. otero, radiology and neurology will review the scan tomorrow morning. we are in at 9am to hear the results, so please think of angel during this time. pray, shout, chant, do what you do, just hope it's the lesser of two evils.

Gilda's Club Wellness Groups

2008-03-11T22:18:00.000-07:00

tonight angel attended her first gilda's club wellness group. she's been anticipating this support group with mixed feelings for a couple weeks now. she knows it's a good way to meet others who are surviving cancer, and to get the sense of belonging with people who truly get it. i hope she finds the strength and encouragement from these survivors that we cannot offer her.

while she was with her group, i attended a group of my own specifically for people with loved ones who are surviving cancer. i was really excited. i too wanted that feeling of belonging. others in my group were spouses-caretakers, siblings and daughters. i introduced myself and choked up and cried like a baby. the most difficult, which i thought wouldn't an issue were saying the words 'stage IV' and 'my 30 year old wife'. it felt so good though even though i felt totally naked in a room full of strangers. words were flying out of my mouth, and i'm not even sure if it all made sense. some of it must have because i saw that they were shedding a few of their own.
i felt welcomed immediately and i brought up topics i had never shared with anyone else before. i now belonged to this club of people who's lives (and their loved ones) had been stopped abruptly, and our lives detoured into chaotic ones. the conversation flowed, and although everyone there had different cancers, the one thing that solidified us all was the boundless love we felt for our own survivor. before i knew it, two hours had passed, and i was still needing more. i will go every tuesday from now on. i can't wait to continue the conversations.

afterwards, angel and i went across the street for her tempura rolls. she tells me the same thing every time (full mouth+food) "i just love these things, i don't know why, but i just do." it's very endearing, and makes me weak inside watching her enjoy something so much.

on other notes, angel is having an MRI this thursday morning, she sort of insisted on it last monday. she has felt a little dizzy, and occasional double vision. although she is aware of the side effect of 'chemo brain' (absentmindedness, forgetfulness, inability to multitask on a regular basis, formulating words as she types, etc) she wants to rule out that it is not cancer. it's a good call on her part.

Yoga @ Gilda's Club

2008-03-07T20:56:00.000-08:00

check out angel's update at www.mylifepartii.blogspot.com

we made the trip back to gilda's club since shortly after the diagnosis when we both became official members (we even have laminated cards to prove it). it feels like a lifetime ago that we stepped foot here and so much happened in between. angel has been feeling antsy since her last treatment, and with some gentle encouragement we got her on her way. for those of who don't know, gilda's club is named after gilda radner, who was diagnosed with ovarian cancer in the 80's. her dying wish to her husband gene wilder, and her therapist, was to set up a support system for cancer survivors, and a place where they could receive as much support as gilda experienced during her own fight with cancer. gilda's club is a very warm and sincere place. everyone we've met so far has been really genuine and into the cause of supporting their members.

angel plans to go to six of the eight yoga classes per month, and also the wellness groups. there is a class that is for young cancer survivors which looks great on paper, but is only for young woman who are surviving breast cancer, and have no plans of opening to any other types of cancer. this makes angel feel left out. she fits the young and female portion. the treatments and side effects are different, but coping with cancer, the feelings of loss, and pain cancer brings on seems the same across the board. actually angel just told me that there is a young man who is trying to start up a universal young cancer survivors group at gilda's. maybe she can help advocate for this group to start up too.

march is national colorectal cancer awareness month! so go eat some extra greens & fiber and broom yourself clean ;)

Echocardiogram....

2008-03-06T19:36:00.000-08:00

the test came back negative. one more thing we can cross off the list. yesterday angel said she wouldn't mind getting the procedure (whatever it is) to fix the problem, but i said how scared i would be since she would definitely miss treatments, which would be a nightmare since things are progressing. she doesn't need anymore bumps. we'll inquire with otero about the details of the results on monday.

tonight i met with erik, a friend we met in egypt. he is moving to north carolina from his hometown of fairbanks. we've planned to hang during his pit stop for a few weeks now. he was really excited to hug angel, but angel's anxiety took over and opted out at the last moment. this is okay and it hasn't been the first time (and certainly not the last), she almost missed my grandmothers visit last month because of this same reason. i am getting used to it now. it's saddens me of course, but i know how difficult this is for her to cope at times. she is definitely not happy about this either.

angel spent most of the day organizing medical papers, and bossing me around. i need this from time to time, it keeps me focused, and it reminds me who really wears the pants.

i met up with our attorney michael myers this afternoon, it's my turn to work for him now. a website re-brand, and a logo for a joint venture he's working on. i am happy to be doing this, and being creative is what i really look forward to. i hope to knock his socks off! it shouldn't be too difficult, he's a lawyer! ;) cheap jab, i know. he's a really cool guy, and he was genuinely happy that we won the regence appeal. he really liked the letter angel wrote for him, and said he was going to show his wife so she knows that people actually appreciate him ;). man, i can't express my gratitude to michael, and george for that matter for hooking me up with him! man oh man!! a ton of bricks off our shoulders.

moving forward.

unhooked

2008-03-05T23:57:00.000-08:00

angel's 5fu was unhooked, and then we ran over for a echocardiogram. the ct scan from monday revealed (and i apologize for not mentioning this in my last entry) clots on her kidneys and spleen. the scan revealed several triangle shaped spots, which dr. otero explained were clots rather than tumors because of the shapes it formed. he wasn't overly concern, but reassured us he is working to control and prevent any further clotting. baby aspirin was added to the regimen which will help prevent more clotting platelets from sticking together. he also said the medicine avastin was partly to blame. so today, unaware that there would be more testing other than a echo, they would also do a agitated saline shot to test for cardiac shunts (this one is new to me, and even my notes made little sense) but i think it tests for congenital heart defects, and specifically for holes (somehow related to the new clots, we will know more tomorrow). a shot of saline through the vein, as we watched it on the ultrasound monitor rushed into the right atrium(?). we were told if it enters the left side (i think they are looking for bubbles??) it indicates there is a hole. the doctor will replay this procedure frame by frame and let us know the results tomorrow. i'm sorry that i can't explain more on this topic, and quite frankly, i hope i won't ever have to.

we left the hospital around 5pm, and headed to angel's office to pick up some things and hung out for a minute. it was a bit surreal, and i didn't realize how much i missed seeing her in her own space. taking this time off from what she loves to do really pisses me off. i think she'll be back, you just watch.

afterwards angel's energy level skyrocketed and she wanted to visit gilda's club to see if they offered any classes tonight, but they were closed. bummer. i was kind of tired out at this point, so i was a wee happy. on the way home angel pointed out a little vegan vietnamese restaurant. all she said was 'yum' and i pulled into the parking lot. full of food and back at home, angel puzzled for a couple hours, drank another smoothy packed with 40 grams of o soy protein, needle pointed for a bit and then finally crashed out at 11:30. throughout the night though, she felt short of breath and talks of going into the e.r. started but ended quickly. to save some time if need be, i packed the duffle bag with a three day supply of things. neither one of us wants to go back, and we are now really happy to be sleeping together in our own bed!

i am amazed as to how well she is doing. this regimen is working, and at the same time, it's not completely wiping her out like the folfox she was on before this. her bilirubins are at normal range 1.2! she is eating much better and without magace the appetite stimulator. she actually gained five pounds last week! which angel allowed me to take full credit for.

i think this month will be a good one, starting with day lights savings this weekend, talks of visiting susan and craig (unbeknownst to them ;) renae's return and a visit from our dear friends dr. paul and carolyn, and of course more goodness with angel's health.

FULL OF FURY #4 & CT SCAN

2008-03-03T18:04:00.000-08:00

[i won't hold the suspense, does this pic say it all or what?!]

the past three weeks was not a fluke, nor a coincidence, a cover-up, or mirage. the minute dr. otero walked in, we knew that some goodness was on its way. his presence has always been warm and confident, and this time was no different. when he delivered the news, smiles were plastered onto our faces, but held off complete celebration until later. so the folfiri, 5fu, avastin and the cetuximab are indeed working! the ct scan proved it. the cancer in angel's lungs have decreased. (new scans were compared with ones that were taken about seven weeks ago) the largest tumor was 1.1" x .8", today it was .8" x .39". the smaller tumors that were previously .35" or smaller have decreased and/or barely visible and without new ones present! then the lymph node in the middle of her abdomen decreased to .5" x .35" which were previously .74" x .55". the folfiri and the 5fu pouch are responsible for killing off the tumors and the two monoclonal antibody medicines of avastin and cetuximab hold tumors at bay by suffocating their food source which played their role by keeping the tumors on her liver a steady constant. of course we all wanted to hear that these were shrinking as well, but wonderful nonetheless since they have not grown any further or new ones have not formed either. the liver is such a big and complex organ, it will need many more treatments to see any visible changes, but we are all optimistic. today was only the fourth treatment with the folfiri anyways, so we are hoping for better things to come. also, the fluid in her lung sac has diminished altogether, and dr. otero did say that the size of the liver overall looked slightly smaller. this is a great start, and we all know there is so much more fighting ahead, but we'll happily take any victory great or small.

we are all so happy, and i can visualize your smiles as i'm typing away. so many good things have happened already in the past three weeks, a lot of hard work has finally paid off! i've complained so many times about how angel needs a break, and now she has had some, and we celebrate every one of them joyously. she's so strong, and managing her new temporary new life so well. she is an intellect, and wise beyond her years, and i suppose these are major attributes that are helping her along the way.

on other notes, this morning after her ct scan, she was hungry as all hell, so we headed to the cafeteria where she ordered up a plate full of food. the man serving her said, "i don't think i could even eat that much!" she had an english muffin, scrambled eggs, hashbrowns and bacon! (isn't this the classic grandslam breakfast at dennys? ;) she told the man that she has chemo today, and she needs all the energy she can get. i felt kinda like a vulture waiting for the pickings i thought would be plenty, but i was so wrong. she managed to finish it all! that's my girl. deneen and toni were with us as well, and we were laughing our butts off at the expense of angel, but she was on top of her game giving it right back at us. as we got up to leave, angel remarked at another table who she thought was staring at her, and bellowed out, "what are you staring at? my oxygen?" totally not cool, and a lot like the way she drives in traffic with zero tolerance, but funny as hell.

i am ready for a mellow night of doing absolutely nothing and just be while angel and toni watch crazy sexy cancer...thank you sarah shin, it just arrived!

xoxo

FULL OF FURY eve

2008-03-02T19:49:00.000-08:00

it's the night before angel's fourth treatment of the folfiri, and what makes tonight more crucial than any other is that tomorrow she'll have a ct scan to see how she is responding to this second line of treatment. as you all know, she didn't respond to the first line of defense of the folfox. so tomorrow is more vital than ever. this has to take. but why wouldn't we think it hasn't? already (knock on something) in the past month, she's experiencing less pain other than the occasional stomach cramping, and the acne-like side effect from the cetuximb which indicates the medicine is working, the positive lab results, her wonderful physical appearance, better appetite, all we can imagine is something is working. i am positive in thought and everything in my body and soul that it is. so when the morning arrives, no matter what you might be doing or whatever time zone you might be residing in, at 8am pst leave yourself a minute to think and send your positive energy, prayers, chants while angel is undergoing her ct scan. sorry i'm posting this so late, and i know i really should've done this a few days ago to remind, but i know we have all been thinking positive thoughts for some time now so it's okay i posted so late. all my best and love to you all.

WE WON!!!!!!!!!!!

2008-02-29T12:06:00.000-08:00

no pain all gain

2008-02-28T10:59:00.000-08:00

i'm just back from dropping susan off at the train station. her stay with us for the past ten days was wonderful. she got a chance to see how angel is on a minute to minute basis. she saw how angel recoups after treatment and how she deals with this disease. in the past ten days angel's health and outlook gets better day by day. this morning angel woke up and said, 'i feel normal, i don't feel any pain.' :) she takes a slow release pain pill every 12 hours, and additional break through pain pills as needed. the last time she took the break through was 12 hours ago! she logs every break through pill, and has been up to seven before in a 12 hour period. this is remarkable to say the least. i've never doubted angel's judgement with her pain, or how/what she is feeling, and i trust her that something is working. we are all very anxious about her ct scan next week (her treatment might be bumped to tuesday instead of monday due to the clinic overbooking dr. otero's schedule).

i feel that so many things are in angel's favor right now, pain control, her increased appetite, her physical appearance, medicaid, regence paying all pulmonary embolism related bills, the fundraiser which couldn't have come at a better time since we might have reached the prescription cap yesterday. will call today to make certain though. and all the support and prayers, positive energy, prayer groups all across the country and thoughts sent angel's way have some way helped. when this all began, my friend paul told me that there have been studies about people living on the west coast sending positive energy/praying for ill people on the east coast, and how it has helped. i now believe him 100%. we couldn't have done this without our friends and family who have shown so much love and thoughts. we need this to continue, because something is working!

we are heading up to surprise luigi later today to thank him personally. then afterwards angel might want to go attend her co-op meeting at 7pm tonight. it's amazing she is actually considering it, but hell, if she's up for it, then do it!

Angel Hair Pasta Fundraiser! What a success!!!!!

2008-02-25T21:02:00.000-08:00

[non-stop at 7pm]

gosh, i don't even know how to begin this entry. my mind is racing (i kinda feel spastic, and this entry is going to be real choppy) and my heart feels like it's going to explode with gratitude, i know it's a lame analogy, cliche, metaphor, or whatever. i am so damn grateful of the pouring out generosity from my friends and their friends and their friends who came out and joined us at luigi's pizza & pasta. man, it was amazing, i really do feel like exploding right now just thinking about it all. all the hard work and generosity of luigi, liza, david and niko. luigi and liza were the true masterminds of this whole thing, and decided to open up shop on their only day off. i can't thank them enough. luigi is going to kill me, but i might be safe if he's not reading this thing, but i thanked him many many times, and he brushes it off as if this is the norm. spending your only day off, supply all the food, cook all the food, and then get your butt kicked for four straight hours!! i thank you sooo much! and as promised, angel looks forward to coming in this week for a personal hug and kiss of gratitude. i also want to thanks the girls up front, toni, alana, steph, and the deneen! okay, more thanks later.

my main responsibility for the event was playing host. i went around being my *charming* self ;) and giving updates about angel to nearly every person who came in. everyone was so thoughtful with their questions. one of my favorite inquiries which several people asked it this way was 'how is angel today?' curious about her today and let's work our way back. this is the way i've approached many of my friendships. start with the present, talk about yesterday and then about tomorrow. i told people that susan is with her at the moment, and not alone, and that this morning angel said in a curiously observant way, 'i feel like something is working.' i think she might have said this before, but this time i felt it too. and yesterday before the infusion of cetuximab, dr. otero said he is optimistic about her response to treatment so far. he's planned for a progress marking ct scan next week. this is exciting, but makes us all very nervous. what if what if what if? i think something is working, her labs came back good as well, bili's down to 1.3!!!!! (normal high is .2-1.2) other levels are pretty much where they should be too (give or take a couple .1's). so this week will be long if we think too much about next monday and what it could bring. staying positive is all we can really do.

[son & father, david & luigi]

back to the fundraiser, i had a great time catching up with old friends i had not seen either for years or since the diagnosis, so many people showed up (with a lot of babies too) they showed so much support for angel!! i'm still in shock.
alana, toni, liza, steph were running around with plates, sodas, salads, and bussing tables. six month pregnant deneen hosting and keeping the overflow of supporters at bay until a table opened up. and the son and father team of luigi and david kept the food flowing. it was a sight. angel would've been so happy to see all of this going on and all for her. there's a lot of love for her, and i felt it all this night.

well, the first fundraiser was a success. if angel stays on the same combo of meds, we could be good for the remaining year and then some! oh and good news, regence started paying for some of the hospital bills (pulmonary embolism related), but none that includes anything to do with cancer. it's a start, but we are still in the appeals process.

thank you everyone for showing up and donating money and your time for this event. i have a list of of names, but i know that some of you didn't get a chance to write in the guest book or the address book, and probably paid cash ;) anyways, i've always wanted to do this, it's a shout out to all the people that helped support angel, kinda like what rock stars do on the backside of the cd cover, giving props to all their friends. so here's mine :)

BIG HUGS TO Luigi for the use of hi place of business, Liza for working it, angel's 'lil brothers Niko & David for the kitchen support, Steph for the beverages and salads. Toni, Lan and Deneen, i can't say enough, but you know how much you mean to us. hmm, this is getting really cheesy, since i'm not a rock star or a dj, i'll end this with a huge list of people who supported, and the names are in no specific order. xoxoxox!!!!

Mary K & Tim T, Marc & Liz, Eric-Carolyn-Jake, John R, Kurt S, Maggie M & Sean A, Pete J, Sue J, The Ford Family, Arthur & Sarah, Andrea & Ken H, Brian & Nancy, David C, Kathryn S, Henry & Gale, Kelly J. O, Lisa L , Marie M, Sam-Megan-Grace-Baily-Marley, The Valencia Family, Clayton & Isla, Ryan & Sarah, Sarah H, Steen, Michael-Mitzi-Sophia, Ellen-Mike-Joe, Rawee, Louis & Carol S, Ann & Brian N, The Psychotherapy Co-op, Alana & all her friends, Daniel G, David & Judy M, George B, Rosalyn & Heidi E, Harold & Ellen W, Jonathan & Catherine B, Stephen & Monica, Robert & Carol M, Robert C, Beverly B, George Sr-Jr-John, Shirley & Craig P, Suzi W, Susan K, Diane B, Jacob, Si & Bruce, Daryll M, Marjorie & Gary M, Nancy M & Gene Y, Paulette T, Jack H, Sue & Robert L, A.J. P, Gerald B, Anthony-Gina-Ian-Lucas, Gerber, Compass Health, Kim B, Melissa P, Nanci V. J, Kelly O, Milana, Bryan, Principal from Lowells, Katie, Karl & Jenny K, Kim-Fred S, Terri F, Gary S, Don & Mary, Al Barbra, David Keith, Dan, Mike G, Sandy & Terry, Mike & Gail D, Bruce & Karin, John & Barbara Logan, Ramon, Bridget Boling, Kim Beuhlman, The Bobin Family, George & Julia, Michael & Gale D, Joy & Emma, Ty-Missy-Cyrus, Peter & Mary, Taylor G, Peter H, Karen H, Matt J, Peter & Katie J, Kristina & Casey L, Erik & Lindsey, Kristie L, Gary & Marie M, Annamarie & Justin N, Pat & Jo M, Kelley Plechu, George & Cindy, Nicole S, Sherman S, Alex S, The Santucci Family, David & Steph, Maynard & Pat T, Doug Y, Weeda-Ellen-Lucas, Gwen W, Nancy D, Ashok D. Susan R. xoxoxoxoxoxoxoxo

this just in!! angel received confirmation that medicaid is covering from this last month until june! we are in the process of applying for the months of oct-dec '07. i'll give a more detailed report as i find out more!!

sunny and beautiful

2008-02-22T19:34:00.000-08:00

i'm back at it again and working a bit. just wrapped up a semi week worth of work with daryll over at msft. top secret of course so i won't elaborate any further ;), but it's been fun. it's also a series of jobs that will hopefully keep me busy for a little more time.

today was an amazingly warm day for feb. renae emailed early in the a.m. and said that it was -20º in mpls, how screwed up is that?! they've had their fair share of the winter freezer burns. renae also told me that she put her clothes in the dryer and forgot to turn it on, and when she checked back, they were frozen! and no she doesn't store her dryer outside. mad mad.

susan is off with a friend and hanging out with her friend's 94 year old grandmother, sounds very familiar. susan will be back this sunday to hang until wednesday. it's been a lot of fun, and she's helped out with more organizing and tying up loose ends with various social services for angel. this morning angel was weeping in thankfulness with all the help susan was giving.

i had a busy day that for once didn't include a run-n-wait at the pharmacy. i worked all day, and then picked up some printouts of angel's mug for the fundraiser (courteously of marc at williams-helde) they look great. i'll spend the day tomorrow mounting them on foam core, my least fav of production, but makes photos look artsy fartsy.

angel's craving of chicken tacos were satisfied, she ate two, and afterwards complain that she shouldn't have eaten so much. her eyes are always bigger, but i asked if she enjoyed them. that's all that matters.

angel's aunt amy is planning a week out here in april, which will be sooo much fun for us all! we'll plan on having no other out-of-towners so we can all just be. renae's next trip is end of march, and then monthly after that. which i always forget to mention, but renae bought us a new front loading washing machine on her last visit! and holy crap, i never knew i looked so damn good in clean clothes before! amazing. it should also add a little value to our home too ;)

tonight we're hanging out with toni, who is spending the night. she still asks if it's okay for her to come over. my reply is the same, 'do YOU want to come over?' angel is always happy to hear about her visits.

i'm off now to take over susan's place at the jigsaw puzzle table, it's angel's new obsession.

FULL OF FURY

2008-02-19T19:36:00.001-08:00

yesterday morning i was waiting in the downtown costco parking lot waiting for the doors to open. i managed to get myself in a little bind with angel's fondaparinux (blood thinner shots) over the weekend. the prescriptions are written as three shots per pick up, and this round, pick up landed on a sunday and they are closed this day. i assume too much, but then again, safeway pharmacy is open seven days a week, i would think that suburban mega shops like this would be too. i called around to the bigger 24 hour walgreens and bartells, neither had the shots in stock. i figured so, this medicine is rare and too expensive to have laying around for the less than the occasional user. i was concerned that angel might throw a clot since this is a 24 hour needed basis, so i called the on call doctor. he said it's not ideal that angel miss a night of it, but since she was going to the clinic in the morning it would be okay because she would receive a shot then. $mall contentions here, but i found out during my frantic search for this shot at various places that they charge about $8 more per three shots vs. costco. doesn't seem like much if it were a one time shot, or several, but you add that up within a year, and it comes out to about $980 more per year. comparative shopping, a lesson my dad tried to teach me awholelotta times when i was growing up, and now at my old ass age it's finally paying off ;).

angel's infusion of the two meds and the chemo went in fine. i was there for a couple hours only, while toni stayed for the majority, so i could let the cleaners into our home (courtesy of lindsey, erik, julia and george who set this up for days while angel gets her treatment) so clean and with natural cleaning products no less. it was really nice to know everything was spic and span. so thankful, xoxo.

midway through the cleaning, i left to pick up susan from the train station, or the iron horse as she endearingly calls it!! she's here for the week to hang and help out, and to just be. she just wants to be in the same room with angel and all the time. right now, susan, toni and angel are hanging out talking about politics and the run between obama and hillary. angel's voice is present, and they are all excited about obama! this feels so normal right now, it's almost festive. angel is eating off a smorgasbord of food susan bought from pcc yesterday. oh, and what a sight! being and watching susan running down the isles, excited to see what was around the next corner, and how the cart was half filled after only the first isle. she was on a mission, and (sorry for the lame cliche) but she was a little kid in a candy store (she is a city slicker, living at ocean shores now) later on, after the cart was filled up, i told her, 'close your eyes, no more, we are checking out now!' she totally disobeyed my orders and grabbed several more things on the way to check out. damn her, but i didn't put up too much od a fight ;). after nearly half a months rent of a 2br 1ba (no joke!) of the bill, we left for home. yummy. when angel arrived, it was a relief, she looked so good, and it is another treatment closer to getting better.

holding pattern

2008-02-15T13:28:00.000-08:00

the past week things have been pretty much smooth, she's been eating much better the past three days, but far from normal. last night she ate a small dinner and then woke up at 1am with hunger pains (for once, pains that are good ones!). i shot up like a good butler would (call me benson) and asked what her tummy was craving. fried egg with cheese on an english muffin! haha! i really enjoy times like this. anything for my love. since all of this began, i must admit that i really enjoy watching her eat. she knows this now, but at first it bothered her a little, and would catch me staring from the corner of her eyes as she was biting into something yummy. i explained my creepy behavior and she understood. i made the fried egg sandwich as she was waiting patiently in her fancy bed. after she was finished, she began talking about what else she could eat! she popped out of bed and started digging around the cupboard. she wanted another sandwich, but opted for some thai pot sticker that toni brought over earlier. it's really weird, but the sound of her chewing food as the oxygen spits out of her nose makes me smile inside. random, yes.

so i titled this entry 'holding pattern' because as things are slowly progressing, she is still very much in the trenches. it feels as if we're flying around in a really bad thunderstorm and waiting in limbo, searching for a safe haven to land. the toughest part of this has been living it out, one treatment at a time, one fatigue moment after another, and waiting to hear the labs come back. angel's impatience to heal sparks a lot of tears and sadness. she just wants to kick this cancer to the curb and now! her last infusion was monday of the cetuximab. she wanted to see the lab results so badly, that the nurses had to calm her down and explain that it's about more than just lab numbers. it's also about how far she has come. she was reminded that two weeks ago she was so fatigued, in so much pain, and in the hospital without hope. we look back to how terrible things were, and how we celebrate the smallest of improvements, but then snap back to the reality of, 'damn, we are in the terrible now.' i know it sounds negative, but it's a constant on our minds. we are learning to be more patient about everything that involves this disease. when it comes down to it, angel is living this nightmare, while we live our normal healthy lives. i guess i'm also saying that as time goes on, and as angel becomes healthier or not, i hope that our friends and family keep supporting her with the same level of intensity. there has been so much support and love for her, and i don't ever want it to end. this is a huge fear for her too. i want to thank everyone for all their love, support, cards, donations, fundraising support, and food! angel is way behind on thank-you letters, but already sent out a wave of them last week.

some lighter reading, angel just called with the newest lab results, her platelet is up to 168! (150-300 is normal) remember at the last hospital stay her platelet was down to 12 before the transfusion?! AND after a couple laps around the clinic hallways, her oxygen saturation is at 96 without using her oxygen. 92-94 is on the low end. she might need a white blood cell booster over the weekend before her next treatment on monday, but we'll see. lastly, last monday, her bilirubins went down again to 2.2! i know that i am bragging, and spending an awful amount of happy energy yelping about lab results and going against the previous paragraph, but i have also seen angel's physical appearance and her activity level matches her labs. we need to keep it up! she is now with deneen shopping at pcc and then hitting up the bar for happy hour! haha, i wish, more like some decaf coffee or something of that nature ;)

other news, last tuesday angel opted out of the second and third opinions on treatment options until she has her first ct scan from the results of her new treatment regimen. i was concerned at first, i felt this is the time to do this, since she is healthy enough to make the office appointment, and staying ahead of the game. but she's ultimately the one who has to make this decision. i am okay with this choice now. we feel like something is working. so much that she is finally getting some of the side effects from the cetuximab, the pimple-like breakout she's experiencing is a positive sign that it's doing its job, unlike the cold reaction from the folfox.

dr. otero continues to be angel's rock and has been an amazing advocate for her ever since the switch. he actually pays attention to her (he also calls me by my first name, and not 'your husband' or 'mister'), and is keeping a lookout for potential repeat episodes from what he experienced while angel was in the hospital last. and yesterday, angel picked up and read dr. otero's name printed on one of her new prescription bottles and said, 'i love seeing my boyfriend's name.' :)

the past weeks, renae's stay was so helpful and made the time go by too quickly, once again, she out did herself on all counts. she cooked, cleaned, did all of our laundry, cleaned closets, organized, attended doctors visits, and made us laugh out loud many times. i am happy that she got to experience it all first hand, the good and the terrible. it was a wild two weeks for her. angel and i were really sad to have her leave, but now that her visits will be every month we'll only miss her for three weeks at a time.

one last thing, last night angel accidentally pricked her index finger with her needlepointing needle and it is now infected. it's a bit swollen and slightly red. i'm keeping a good eye on it along with frequent temp checks to make sure it doesn't get out of control with fever. the nurse said if it gets worse tomorrow morning, she should head into e.r.. one of the common side effects of cetuximab is infection, and it would just stink if she had to go in for something that seems relatively minor to us, but something that could turn for the worse.

i know i am a little winded and scattered, but i think i dumped mostly what i wanted to share for now.

angel's long awaited blog post....

2008-02-10T11:45:00.000-08:00

...just in case you haven't been checking angel's blog as frequently, she's finally posted!!

enjoy!

at the mall

2008-02-08T12:46:00.000-08:00

[angel, deneen and zade]

angel, renae, deneen and zade are cruising the mall right now. what a sight to see, angel with her oxygen tanks, and the wheel chair. i wish i could've been there, but i heard the entire story when they returned. renae and angel explained it much more in depth and with much humor, but when angel was 'wheeled' (this makes me laugh!) into nordstroms, she stood up to leave the chair when she suddenly fell in slow motion to the ground! luckily she wasn't injured. her mother almost had a heart attack and feelings of dropping a newborn child came to her mind. chaos arose, a small crowd gathered to make sure everything was okay, and from that crowd two elderly folks helped out. renae noticed some closed circuit cameras and jokingly said that they should sue. angel chimed in and said it might be a good way to pay for the hospital bills. thelma and louis part 2, on wheels, minus the cliff at the end. deneen arrived at this point with a look of shock, but after realizing everything was okay, onslaught of laughter began.

they walked around south center mall, angel holding the wheelchair for stability. this is a sight to see, angel pushing an empty wheelchair as if she's pushing around her invisible friend. a few hours later the big oxygen tank (strapped to the back of the wheelchair) level was in the red and nearly empty. renae says i could've killed her for doing this, no harm, but they left the portable tank in the car. so they left to grab it. when they got outside, renae realized they parked on the opposite side of the mall! raining, and windy, renae frantically ran, pushing angel in the wheelchair looking for their car. deneen pulled up like the calvary to see two stumped and confused looking people, angel holding all the shopping bags on her lap. renae and angel followed behind deneen's car like a couple of crazies, but finally found the car. i wish i had pics of this all.

unhooked and then some

2008-02-07T17:15:00.000-08:00

angel was unhooked of the 5fu infusion today, and all went smoothly. updated labs, notes, and charts from the last hospital stay went out to swedish and the UW so the doctors are updated on angel's up and up progress. some issues at hand, since regence is still denying, UW's accounts called and said they won't be able to proceed with the second opinion on treatment unless we pay out of pocket. coverage on this won't start until aug 1st, the nine month grace period if at all due to the pre-existing conditions. another person from accounts will contact me tomorrow to see how we can handle this, perhaps financial aid? the people at swedish didn't mention anything to me today when i called to reschedule for their opinion next week. but i assume we'll run into this same issue when we meet. these opinions on treatment options are so important to me, i want the best possible care for angel, no doubt about it. we had a rough morning discussing this. we are so satisfied with the aggressive treatments dr. otero is giving, but the peace of mind, and for the sake of covering our bases so we never ever ever ever feel like we should've been more proactive, these second and third treatment opinions are crucial.

i had a busy day otherwise, met a friend for lunch, and picked up a small project, but unfortunately the work from this same place will come to an end soon. tomorrow i hit the pavement again looking for more work. challenging, but always rewarding. i am a hunter, and need to bring home the tofu.

i am also nearly complete with a flyer for the first fundraiser event for angel, email blast and postings in the area on monday, so stay tuned ;)

[posing with renae's plate of food. i can't wait until angel's own plate is this full again!]

tonight we eat luigi's (free food like this is gold! thank you luigi!!), and hang with friends for a night of LOST. cozy and comfy.

FULL FURY

2008-02-06T10:21:00.000-08:00

last week angel's misspelling of folfiri made dr. otero laugh, and now i will start referring it as Full Fury. it matches angel's strength and rage to eradicate these tumors. angel's treatment yesterday went smoothly, and renae was able to be by her side for the entirety. she now knows what goes on days like this, and long distance conversations about this won't be so mysterious. angel came home around 6, and ate dinner the minute she settled in. small things like her present appetite lights up my days! angel and renae were more than impressed with dr otero. he even did a double take at angel in the lobby area, and exclaimed how great she looked. angel imitated this look of surprise to me which made me really happy.

i was at home dealing with paperwork getting various information on costs of getting 2nd, and if we had more than two to use. in the case we only had one opinion, we would most likely use that with the UW rather than swedish. but i found out that since these are for treatment opinions and not for surgery, we have an unlimited amount. a little good news to add with the extra good news updates on angel's labs. all levels great. whites cells were healthy enough for the full fury regime. bili's up slightly to 2.9, platelets up to 130! (again normal is 150-300) all red counts were normal, and her two AST's that test for liver enzymes were both normal! angel's stomach looks so good that i just want to keep rubbing it over and over again. it's the happy buddha in me or something. i did have some bad news, and will only briefly remark on it, but regence has denied the first phase letter from our lawyer. bummer. the lawyer has been working on the next steps since yesterday.

angel slept for most of the night and woke up this morning with hunger pains, yummy to hear. some yogurt, granola and fruit was a hit. she slept for most of the day, but got her green thumb going and clipped the dead leaves off the plants. i was laughing as i was watching her, because she never did such things before! looks like the full fury does have some good side effects!

i am almost wrapped up with a flyer for angel's first fundraiser dinner at luigi's towards the end of the month. i look forward to working it too and exercise my old serving skills. washing dishes is my backup plan in case all fails. i will shoot an email out to everyone i know this friday/monday, and hope the turnout will be generous.

i am at tully's right now and about to head home soon, i think the shanks are heading over for a belated bday dinner for renae who just turned 100 years old. haha, kidding, 55, but i think she now qualifies for the senior discount coffees at mcdonalds?

super tuesday eve

2008-02-04T21:18:00.000-08:00

go giants! okay, you must believe me that after my last post about the prediction of the patriots beating the giants, that i truly wanted the giants to win. underdogs rule, and i've felt badly for rooting for michael jordan and his types for all these years. anyways, my aunt lyn actually trashed the sh*t out of me about this and even went so far to say that i voted for the un-underdog of dick cheney ;) (HUGE-MONGROSS WINK) anyways, today was a spectacular day. i awoke briefly this morning (i now sleep in the living room to be close to angel's occupation of her new snazzy hospital bed dig) hearing sticky plastic sounds. i thought out loud that i said saibot (ours, i mean, angel's dirty fat cat) was chewing on plastic bags again. angel said she was texting (i find out later in the day she was texting toni and amber at 6:30 in the morning! this gave me warm thoughts of a little girl on christmas morning, too excited and awake anticipating what the new day will bring) and the snap of the plastic keypad was culprit. i find out later that angel made herself some breakfast, and around 11:30 she dropped the appetite hint of 'i feel an appetite for a fried egg sandwich.' renae got going and started this up for her. eating is a blessing when it comes on, and supplying her demand is easy as organic cake.

angel and renae headed off to the oncology clinic for another white blood cell booster to prep for a full dose of treatment tomorrow. she'll have the two monoclonal antibody infusions of cetuximab and avastin, and hopefully have the folfiri regime depending if her whites are high enough. angel's stomach feels so normal, i actually felt her stomach muscles tonight, which i gotta tell ya'all, it's been a first for some time now;) but jokes aside, she is looking a-okay.

tonight at 9pm, angel got her shot of fondaparinux, the blood thinner. we encouraged renae (a little reluctant at first, needles are scary) to perform this act since her visits out to seattle will be monthly, and the fact of having more people who know how to do this will be better for all. she did a spectacular job, and coaching her for the 15 seconds of the injection was really fun to watch. but at first her shaky hands and her nerves showed a bit as she stuttered in the dose rather than slow and steady. anyways, she's a pro now, and it's another job i can add to her repertoire, which includes cleaning, cooking and mother-in-law/son-in-law banter ;)

"NOW I CAN PASS OUT!" -Renae [a minute after she injected angel with the fondaparinux]

back home

2008-02-03T12:08:00.000-08:00

angel was discharged yesterday at 3, and we were all anxious to get our butts home. angel was feeling more confident about her health and thoughts of returning home was mostly positive, but the usual apprehension of not having the round the clock help was present.
i ran to costco pharmacy to pick up another three days of fondaparinux, and a couple of new meds to stimulate appetite and steroids to help her lung capacity.

i was stoked to head home for so many reasons; angel is happier being home (she told me just how much she liked being home a couple times already!), a cleansed house by renae, homemade italian food from gloria and a visit from my grandma, brother and his wife. feeling normal again is what we all need for a bit of time. i hope now that her platelet drop is on dr oteros radar, he'll be able to manage this better, and one less surprise for all after her next round of treatment.

my grandma's visit was amazing, and a long, deep smothering hug was all they needed from each other. the visit was short, and angel's energy quickly dissipated and headed to bed.

this morning angel woke up with an appetite, and an hour or so later she was eating a bowl of gloria's pasta, this was at 9:00 am! it's all about what she can get down, and to enjoy. her appetite made me really happy and called some friends to share the good news. she looked good overall too. i know i have to keep this in perspective, because it's really easy to go overboard with the smallest of good things. one step in front of the other.

this morning, i met my visiting family for breakfast and caught up some more. i'm still amazed that my 94 year old grandma came out again. she feels so sad about the whole situation and needed to see and hug angel. she is incredible!

i think i'll head over to pete and deneen's to unwind and watch the patriots beat down the giants ;)

discharge eve

2008-02-01T17:48:00.000-08:00

(thursday night watching LOST)

i am home waiting for the delivery of angel's high tech, all around adjustable, hospital bed. i wasn't quite sure where i was going to have it place, until renae put a good twist on it. she said that this will be a short term basis, and if angel needs to use it one night for comfort breathing she can. the thought of her on this thing is just too strange. but hasn't this whole situation been a little surreal? it's good nonetheless that she will be home tomorrow. angel is feeling better physically than a week ago, and mentally confident that home will be safe once again.

labs from yesterday are all on the up and up. no big changes, but the trend of good liver function continues, and she is producing her own platelets now! her appetite is better, but far from the norm. today at lunch, she held back from gorging herself to causing stomach cramps (nowadays 10 bites worth of food is considered gorging. i've realized throughout this process that food, cooking and eating has been such an enjoyable part of our relationship. i'm excited for this part to start again as she feels better and better). she's also walking and stretching, and spent a good amount of time in the waiting room playing and directing me at a 500 piece puzzle of a garden setting. even with deneen's ten piece contribution, it's unfinished of course ;)

i must add that we met another patient named robert in the same waiting room today. he was in his 60's, he looked healthy, and was being discharged today. he was recently diagnosed with pancreatic cancer (nov 1, 2007) and told us that he was still in the process of deciding between treatment or not. he said this very stoically. i sensed he was genuinely up in the air about this dilemma. i felt his strength and confidence that he had lead a rich and wonderful life up to this point. such a difference from angel who is young, beautiful, and a will to live so she has a chance to experience everything robert has.

i can't wait for angel to be home tomorrow where the surrounding is our own. i first wrote '...surrounding is familiar' but didn't want to confuse it with the now familiar faces and places of the hospital.

one more thing, my friend asked me if there were any strange politics about switching doctors. initially, i thought there wouldn't be so much, but then as the days went by, i realized that what we did was a pretty big deal. the morning dr malpass acknowledged our needs to switch, the room had a number of people including candance the day RN and her RN intern, robin the night nurse. candace told us that afternoon that the RN intern had never experienced such an intense situation before. robin told us similar feelings, and it seems that all the doctors know of this too, and bring it up in an uncomfortable manner, like, do you know you just fired the best freaking doctor we have here? maybe i'm just being paranoid, or maybe i'm just so freaking happy that angel is so freaking happy about the switch ;) (i don't want to come across as crass, just happy that life seems a little more light under the circumstances)

my brother nate, his wife erin, and my 94 year old grandma red got into town tonight from minneapolis!! sight for sore eyes. will be nice to all hang out tomorrow night. who knows, perhaps toni's mom will cook an italian dinner for us all!!

teener

2008-01-31T15:06:00.000-08:00

angel's childhood cat teener passed away last sunday. she lived an amazing and healthy life. she was 17. i can only hope our other pets to live as long, or at least as healthy. angel was 14 years old when she first got teener, and they have accomplished so much together. i'll pick up her ashes next week so angel can say a final farewell.

dr. otero caught me before i left the hospital this morning as he gave his condolences about teener. he got word from the RN michelle. this might seem insignificant to you, but for me it's huge! more importantly angel was happy to hear about is kindness.

more good news, angel's platelets are up to 60. yesterday, dr. otero was hoping the count would be 40 after the transfusion, but reached 50, and then over night hit 60! he thinks her body might be producing platelets on their own. we'll see what tomorrow brings.

angel is walking some more now, and even did a couple yoga warrior stances. overachiever ;)

tonight we're watching the season premiere of LOST, long awaited, and much anticipated. should be a lot of fun.

gradually and steady

2008-01-30T11:47:00.000-08:00

dr. malpass made his round this morning as promised. as he left the room, angel said, 'hey no hard feelings, right?' malpass laughed and smile, and said, 'of course not.' all is well on this front.

dr. otero came by shortly thereafter. angel's bilirubins are down some more to 2.5! this is still great. but her platelet is down to 12, so the platelet transfusion was ordered and is currently getting it through IV. candace said her platelet count is already rising, and hoping angel will be able to produce these up to the 70's on her own by next tuesday for chemo. if not, she'll continue with the avastin and cetuximab. and possibly lower the irinotecan dose of chemo, which might be cause of the drop.

some physical therapy for angel today, and some design work for me.

CETUXIMAB

2008-01-29T23:55:00.001-08:00

the new infusion of cetuximab was set for 1pm today, but a prolonged bump of accessing her port delayed this process until 9pm. the amazing RN Robin sat in and checked vitals every 15 minutes to make sure no side effects occurred, and incrementally increased the rate of flow until the 300+ cc's were complete. which was completed around 2am. no side effects during this, but some might pop up in the next couple of days.
toni, deneen and i chatted and ate a whole lotta food. including donuts that robin brought in and luigi's. angel part took in some luigi's greek salad and his macronata. she might have paid for it later in the morning with stomach cramps, but satisfied getting it down. this makes luigi really happy that his food is a constant for angel and has more on the way.

Dr. Henry Otero

2008-01-29T09:21:00.000-08:00

we've made the switch to dr. otero from malpass as angel's primary oncologist. this topic has been on her mind since day one. but after many sessions with malpass we've made the gentle transition to dr. otero. angel feels really good about this move, but malpass and his amazing skills will be hard at work, and daily visits are promised. our first experience with dr. otero was last friday, and his appearance couldn't have been timed better. his first concerns were pretty rough, actually one of the most difficult so far. since the folfox wasn't working, he thought that angel had a two week window of opportunity for something to happen before, well basically before the sh*t hits the fan. tough to swallow, but brutally honesty. we talked it out, he shared his ideas, explained in detail other options, he shared that there might be research with dr gold at swedish, uw, and cedar sinai in l.a. he explained in detail about his thoughts about introducing cetuximab, a weekly antibody infusion, and how it wouldn't hurt to start being more aggressive. he has also advocated for boosting her appetite, and physical therapy. his holistic approach is well noted by angel, along with his exiting comment, "i know how it would feel like, and how i would want to be treated [treatment for this disease]."

today is the first time my heart, mind and the hospital room has felt so light.

angel's bilirubins went down some more to 3.0! let's keep this trend going!

one last thing, i thank you erik for explaining the bilirubins, i hold back from explaining in detail about the medical stuff so not to mix it all up and confuse ya'all! ;)

bilirubin and alkalines

2008-01-28T12:34:00.000-08:00

yesterday was a good day for all. i will add that 'cautionary optimism' about the following has been practiced well by us all.
dr. otero told me the news last saturday about angel's bilirubin going down slightly. he stopped to tell me and deneen that he has a little bit of good news. angel bilirubins have gone down slightly (the lower the number, the better her liver is processing bile from her system). any good news is welcome. last friday was a very difficult day for us. dr. otero told us that if something doesn't start working within the next week and a half to two, we are in trouble. he feels that putting angel on an additional weekly chemo treatment (cetuximab) along with the folfiri wouldn't hurt a bit, and in the best case could help. but the news i want to share with you are her bilirubin levels and the positive trend since last tuesday (normal range is 0.2-1.2):

tuesday jan 22nd:
chemo day, before infusion began: 7.2

thursday jan 24:
after folfiri infusions: 5.4

friday 25th:
during the tail end of 5fu infusion: 5.2 (no statistical significance)

saturday 26th: 5.5 (no statistical significance)

sunday 27th: 3.9 (statistically significant!)

today: 3.8!

more good news is her alkaline phosphatase levels have dropped during this same period from 647 units down to 503 units (normal range is 40-150)

this is the first bit of good news for some time now!!! dr otero is saying something is working, but is cautious to pinpoint the cause right now. but it could possibly be the right combo of chemo for angel. we just have to hope this trend continues.

other topics of interests and finagling: angel's platelet levels have dropped in this same period from 114 to 20 (normal range is 150-300) they are monitoring this closely, and will give her a platelet transfusion if this number reaches 10-15. chemo or another allergic reaction to blood thinners are to blame, will find out later today once blood tests return. we are hoping for the former since angel is basically out of options with blood thinners.

another week at v.m.

2008-01-26T14:40:00.000-08:00

it looks like angel will be at virginia mason into the week. getting her breathing stabilized is the goal before sending her home. the pulmonary specialist dr. mahoney met with us last night and after review, her team has opted to forgo a risky procedure to clear the clots in her lungs. angel has survived the big one already, so they will just continue to monitor her.

dr otero who is replacing malpass for the weekend told us that angel's bilirubins have gone down some, which is a good sign, but we are waiting to see the trend.

renae and angel's uncle rob are here. i think it will be wonderful for rob to see things first hand. he and amy have been amazing cheerleaders from minne since day one. renae will be here for a couple weeks, which will help out immensely.

2nd & 3rd opinions

2008-01-25T19:56:00.000-08:00

i got the ball rolling to get second and third opinions for treatment at UW and swedish cancer institute. we are covering our bases. we trust the team at virginia mason whole heartedly, it just feels good that we are exploring the options. UW is remarkable, and we've heard that dr gold at swedish is amazing, and also runs the show in the research center for GI cancers. the team at virginia mason have done amazing work, and have treated angel wonderfully. the doctors, the fabulous nurses; robin, jenny, candace, lindsey, and specialists have been tops.

we have an appointment with dr. gold this thursday, and will hear back from UW soon. they might have different methods to attacking this cancer, or might concur with malpass and his team. either way, we are happy to hear their ideas/agreements.

a.m./e.r.

2008-01-24T18:03:00.001-08:00

at 6am angel got up to use the bathroom and experienced severe shortness of breath, she explains it as suffocating! she woke me up and we switched oxygen tanks between the pump machine to the compressed tank. not much relief. her lips were gray-red at this point and panic had set in her eyes. i was terrified. i called 911 and within minutes the fire truck sirens could be heard, and the first response team entered and performed their work. a few minutes later the paramedics showed up. surreal to have all this happening in our own bedroom. i've once imagined this scene when we were old and gray. she was rushed off at 7am to virginia mason. once there, angel's vitals were stable, and her labs came back normal, except for her platelet number which came back in the 70's, vs 117 from just three days prior! worrisome. malpass got word, and a night on the 15th floor was ordered. angel was set to stay a night regardless of what malpass would've said. she knows her body well, and has proven this time and time again. they will monitor her throughout the night, and hopefully come up with a decent explanation for the drop in platelet level. every time her levels were this low, she had reactions to the other anticoagulants. i just hope after all the fear, stress and then rejoicing of getting our hands on the fondaparinux, that she is not allergic to it now!

she is sleeping now, and i am going to settle in for another night.

anticoagulants and co-pays

2008-01-23T15:45:00.000-08:00

the past three weeks the doctors have been trying different blood thinners to control angel's clotting. angel is allergic to heparin, has antibodies to lovenox and another similar drug that processes through the kidney rather than her liver. the latest drug she's taking to is called arixstra (fondaparinux). yesterday, her platelet count was at 104 which is on the low side of normal, but has gradually gone up. she was down to around 60 two weeks ago. all good news. the struggle we were faced with was the price of this drug. it costs $136 per dose per day, and she needs this as long as she has cancer. add the numbers, and multiple it, you get about 50K per year! i felt guilty about this last week, and that i wasn't able to provide angel with what she needed, but even for someone that makes 150K, and after taxes, they'd be paying out 50% of their income! because of the financial reasonings, dr malpass was going to try coumadin one last time since he never exhausted this resource to begin with (which only costs $10 per month) but since it processes through the liver, it's not ideal. good news, this morning i contacted 'bridge access' a program glaxso-smith-kline has to help people like us pay for their expensive meds. it looks like once we exhaust the 3K cap on co-pays (next month) they will supply 100% of these shots until the co-pay starts again next year, and then the process repeats! pretty stellar! this takes so much of the burden off of me, even though then i will pay 100% for any additional drugs out of pocket, this is still manageable. there are discount programs out there for general prescription drugs that my friends and experts have already brought to my attention which i will exhaust if need be.
anything in the good news department is welcomed.

when i woke this morning, i noticed that angel's breathing was almost normal, instead of the short rapid pace. i told her this, and she replied with, 'your morning breath is a little worse today' ;) it amazes me that her sense of humor was present even after she experienced the worst and scariest night of hallucinations, and unmanageable nightmares. during one episode, she sprang up and said she didn't know who i was, and asked for her benny. i held her for a while until her thoughts settled.

angel is recuperating in the living room, enjoying the sun. this morning she said she felt something different. she couldn't quite place it. but it wasn't pain, nor did it feel like anything bad. we both thought that her tumors are reacting well to the new mix of chemo??? in any case, moments like this, feeling positive about this effed up thing is truly what it's about.

back at home

2008-01-22T19:17:00.000-08:00

angel did pretty well with the chemo. and once again, the nurse was saying that angel probably won't have any side effects from the new chemo. wrong. she's nauseated, hot flashes, cold sweats. all managed during treatment though. anytime anyone says she won't get something, i look back to the odds of a healthy 30 year with colon cancer. i'm not feeling much better, anxious, and sad, but glad to be home where it's quiet and warm. angel is sleeping away now, she'll need all the rest she can get before this weekend before renae arrives. it's been a very long day. deneen was awesome today, helping out with the last bits of angel's social security disability papers, and completing a small list of to-do's from susan. toni comes over tonight for a much needed pep talk, and another present body. i couldn't do this all alone, our friends have been amazing! with a capital a+!
i am beat down, and laying down with angel sounds like so much fun.

give angel a f***ing break already!!

2008-01-22T12:42:00.000-08:00

chemo day, and i am so out of control. the final word, folfox is not working, and switching to folfiri, same but switching out the oxaliplatin with irinotecan. more toxic, but something different. this is the second line of defense and it has to take. right now, i am hating angel's body for its stubbornness! why can't it just give up already and give her mind a f***ing break!

this week i'm getting a second opinion on treatment at uw, i hope they take her, the resources there doesn't seem as limiting.

i'm a mess right now. i should head back and put my game face back on. deneen is spending the day with her in the treatment room.

this has to work. stay positive, and keep sending angel your thoughts.

this past week

2008-01-16T09:24:00.000-08:00

today is day seven in the hospital and malpass thinks she will be ready and stable for discharge tomorrow. i am so ready to leave, and angel feels comfortable with this plan too. what a week it has been. i really should've posted a couple times before this post. i don't really know where to start. maybe a list will do:

1) bloating and water retention. work on her potassium levels and start diuretics called lasix. angel gained and lost 25+ lbs. of water retention.

2) allergic reaction to blood thinners; heparin, lovenox, lepardxxxxx?. using fondaparanex, which seems to be working and processes through her kidney rather than the liver. they'll keep an eye on progress of this. malpass and his talk of re-introducing coumdain makes angel nervous, and makes me a little frustrated since he so nonchalantly brushed it off three weeks ago. but possibly a good idea to re-test since it is much cheaper than the fonda.

3) met with an insurance lawyer (a friend of george, of george & julia ;) to figure out the regence insurance situation. he's taking the case! other than that, i shouldn't elaborate further. but we are doing a work for trade agreement if the case doesn't go to trial (redesign web and print work) and contingency if it does go to trial.

4) regence refusing to pay for in-home oxygen until july 08. the sh*t, the fan.

5) angel is getting better day by day, and we really want to get out of here. feeling like we've over stayed our welcome.

6) amber and brian in town.

7) seahawks lose to packers.

8) angel's nurse robin is amazing!

9) our friends are organizing and scheming, helping with paperwork, thinking up fundraisers, applying for financial help, researching non-profits, contacting gov peeps.

10) a lot of laughter, tears, sadness, and high spirits to fight.

11) there is more, i know it, but i am tired now and a nap is in order.

"it's not whether you get knocked down...."

2008-01-11T11:16:00.000-08:00

malpass met with us this morning and discussed the ct scan from yesterday. he says the tumor in angel's liver has grown since starting chemo on dec 3. we were really hoping that an infection was the reasoning behind her low and high fevers and pulse rates and not the tumor growth. which could be taken care of by antibiotics. avastin was finally introduced into the chemo regimen which helps, if it works at all, to keep new tumors from growing and spreading, but not shrinkage. malpass is hoping that the rise of the cea count will plateau and go down with more chemo. any bit of hope is good.
my morning was really tough, the news of her tumor growth was another kick to my stomach. it felt much like when i heard the original diagnosis, shock, disbelief, dark thoughts and the physical affects that go along with these. it's a nightmare! my heart feels like it's going to burst open when i look at angel just lying there.
i am one with angel and i feel as if i am going through the same suffering as her. i am so weak with sadness and quiet tears. it's just taking some time to absorb the news before the positive, fighting mode kicks into gear.

angel's desire to get healthy and get out of this place is remarkable, and just so she can go through her next round of chemo and all of its nasty side effects.

susan just walked in! yay!

ICU

2008-01-10T08:55:00.000-08:00

i'll make this short since i'm not too much in the mood to write.

angel is back at back at virginia mason in the ICU. last night around 10, lan checked her pulse at 48 or so. triple check and got the same reading. her temp was around 94º, a constant since the night before along with cold sweats. a call to malpass, he suggested we just go in.
angel is getting another ct scan on her abdomen and chest, two team of doctors and malpass aren't sure what she might have. malpass is perplexed (she is off her 5fu drip now). an infection is their best guess until they do more testing. they feel she is ready to leave icu for the 15th floor....again.

angel's mood is good considering, and is comfortable. she's lively with the nurses and making them laugh.

i'll recruit toni or lan to give the proper update on angel's condition.

btw, it's our 10 year anniversary of being together. what a way to spend it, $4000 per night hotel, great service, and so-so food. eat your heart out robin leech. we will never forget the big 1-0. also, angel reminded me that today has been two months since her diagnosis. i hope the next two months is smoother for angel's recovery. i have a good feeling about it, she's on a couple detours and then she'll be back on track for the real fight.

more to come in this post, so check back for todays updates.

paper or plastic

2008-01-07T21:55:00.000-08:00

angel is discharged! i am discharge, toni and lan are too! yay!
they drove off from the hospital at 4:15, and i headed to the pharmacy. wow, and i hit the jackpot! two paper bags of goodies that will sustain angel for the month. contents of lovenox (one-time courtesy of virginia mason through their sweet-charity funds, and then zip, nada. no more charities for us :(. it reminded me of the scene towards the end of the good-fellas when paulie turned his back on henry, after handing him a lousy $3500 to last him for a lifetime. i realize this is a strange comparison, but it's sort of sad that virginia mason has turned a portion of her back on us) anyways boo hoo, but i am thankful for their contribution.
after two hours and some confusion at the pharmacy, i was finally free to go home. i was excited. last night i ran home and cleaned the house, including a little floor washing, and the bathroom fixtures. yea, i'm a beeyach, but only angel's.

shortly after they drove off, i called angel. i asked how she was and she replied that they are on their way to cali with a guy name jerry, cruising down highway 101. what a babe.

this morning at the hospital, angel wasn't feeling that great, or at least good enough to be discharged. she thought at first that another night was needed. especially since chemo was set up for tuesday morning. it just seemed to make sense to the both of us. stay. sleep. chemo . but dr ko and lee explained in detail and reassured angel that today's discharge is a good thing. the antibiotics will help with her pneumonia, along with a couple nebulizer prescriptions, an inhaler, and an in-home oxygen set up. the machine is pumping away right now. it processes air from the environment, so no pressure tanks as i thought initially. she also has a big backup in case the electricity should fail, and a couple portable tanks when angel's out at the discotech. i offered that we could all wear the nose intake tube when we all go out since she felt sad that she would look 'sick'.

i return home to a big dude named john, the home oxygen delivery specialist. bit of a lonely kinda guy, who managed to have some fun with us, but dang he talked so much. at one point, i motioned a throat cut to toni to stop talking to him so he might leave soon. i'm kidding, he was a nice man, really. the set up is great and angel will benefit from the forced oxygen.

angel was mostly in bed, on pain control, dazed in and out. i am so thankful that toni and lan were here. lan is two quarters away from graduating from the nurse program from seattle u. she's finding this is good practice, and a helpful hand for angel and myself. she's going to make many patients happy. toni is just rock solid and is a know how kinda gal when it comes to rescue and paramedic sorts of things. angel and i have always kidded around that if our kid were to ever break a bone, it would have to be with toni. joking aside, it's how confident we are of her abilities.

i just heard this story from the three girls which i thought was super cool. angel's name that's written on the patient chart along with other patients at the hospital. the nurses have a first-come-first serve basis of their choice of patient they want to care for during their shift. well, angel's name was completely full! i'm sort of convinced i played a part in that too ;). that helped make my day. angel rules, and ya'all better step off! ;)

lan's spending the night and going to chemo with us in the morning. we are off to bed, rest is needed by all.

update by toni

2008-01-06T13:06:00.000-08:00

from our resident toni:

angel is staying in the hospital for one more day. until monday.

between the outpatient people and who they contract with not many people are here on sunday to do all the discharge stuff. she is going home with oxygen and lovenox.
its seem that angel will be staying on the luvenox to stabilze the blood and anticoagulation.

she is going to get a blood transfusion today. her hermaticrate is 28 which they said would be fine but in trying to do chemo on tuesday they want to make sure her tank is full.

they just finished drawing from another set of labs this morning

angel is having a little upper back pain. they think it is referred from the pulmonary edema. they have been monitoring her close. the doctor said she heard a little diminished lung sounds and that there is a little fusion...basically a little fluid between her lungs and lung sac. the last chest xray was on friday and they just took her down to do another, therefore they can compare and keep on top of it.

her ultrasound came back yesterday and they said that the wall of her gallbladder was a little enlarged and she has fluid in her abdominal cavity. (there's been fluid present since surgery) she asked what she can do about it. they said just keep reporting the pain and that her body should take care of the fluid slowly.

they took her off the antibiotics. they think the low grade fevers are due to the cancer and the pulmonary embolism, that it's not from the infection or pneumonia.

the respiratory therapist should be in soon to help angel get what she needs for the set up to take oxygen home.

the social worker came in the other day and they need to take care of working on the application. which they will do tomorrow on monday when people are here.
angel filled out an application for charity care and medicade. the big one now is the lovenox to try and cover it and the application is in the process of review. the doc said that the first month is covered and we will go from there.
more will come tomorrow on this.
they also will be going to the house and set up the o2 and go through it with them.

(another update by ben)
after another ultrasound, the doctor officially said she has pneumonia. so for today, she'll have antibiotics and a watchful eye on her. hope we can safely leave tomorrow.

things aren't all so bad through the heavy, we're having plenty of laughs, and some even at the expense of angel ;) she's funny as ever. here's a posed pic of her during lunch today. double fisting: veggie burger and pizza from luigi's (delivered by the man himself, luigi)

update by lan

2008-01-05T12:23:00.000-08:00

alana was sweet enough to write an update on angel from the past several days, thanks lan!

1/5/08
Okay, here is the update on how/what has been going on with Angel over the past three days.

On Wednesday (1/2/08) her chemo was cancelled because her white blood cell count was too low to be able to safely receive chemo (since it would further compromise her immune system). She had a slight fever and we were told that if at anytime her fever reached over 100.5º that she needed to go to the E.R. After the cancelled chemo appointment (where Dr. Malpass sat for some time talking to Angel about blood thinners and her clots) and a fabulous lunch of veggie burgers we returned to the hospital to the Anticouagulation clinic to speak with the pharmacy resident about putting her on Heparin. The appointment lasted about an hour and both Angel and I were pleased with the resident that had spoken to us. For the next week or so it will be a balance act to stabilize her on the Heparin.

After the clinic, Angel and I returned home to rest. She sat on the couch dozing in and out while I watched T.V. She appeared quite short of breath and throughout the day had slight chest pain which the Dr.'s thought was due to her liver pushing on her diaphram. We took her temperature which was 101.3. We packed a suitcase and returned to the E.R. again. She went for an X-ray which didn't reveal anything so they ordered a C.T. scan of her lungs. The C.T. scan revealed that Angel had multiple clots in her lungs which is known as a Pulmonary Embolism. The doctors think this is probably the cause of her increased heart rate, fever and shortness of breath. She has been started on antibiotics to help prevent any further infection and on continuous heparin infusion to keep her blood thin. Her spirits have been quite high despite these set backs. Toni, Ben and Alana have been with her around the clock.

The doctors just came in to examine Angel and showed us the C.T. scan, the blood clot was 5 inches long and 1 inch wide, which is very large and would have knocked most people down, but Angel's a fighter. She literally walked into the E.R. the other night and was joking at times about it all, pretty damn impressive! The doctors are going to do an ultrasound of her abdomen to rule out any infection or further complications of her liver or bile duct since she has had some increased tenderness over the past 24 hours. Depending on the results and if her fevers diminish she may be discharged by Sunday or Monday and Dr. Malpass with determine if she is ready for Chemo on tuesday.

the new year

2008-01-02T22:23:00.000-08:00

dang it, another snag. today was treatment day, mentally ready and my schedule mostly cleared to hang with angel during her recovery days. the morning started early to see dr malpass. after waiting around and explaining the blood clot ordeal, and then the usual blood tests. she was sent home, but not before a trip to the coumadin clinic, because her white blood cells were too low for chemo. she'll check back in this tuesday. a little lunch with lan, and then they went home. but before they could settle down for the night, and damn it, i was stoked to hang out tonight, angel's temp was 101.6. last week the nurses told her to go in immediately once this came up, so off they rushed to the e.r.
i met them here after a work day onsite. i am writing this in the waiting room while angel is getting another ct scan to check her lungs. i can't really say what's happening, and won't assume anything until i hear myself. i will update once this happens.

...five hours later 3:15am...

i am sitting here with angel by my side. we're in another private room on the 15th floor, the oncology level. angel's ct scan came up positive for a pulmonary embolism with 'quite a few' blot clots that broke off from the clot in her leg. i later find out that (i forgot the name already, but will take notes when the 'team' of docs return later this morning) but one clot is quite big and is in her right lung, along with many smaller ones in various places. damn, there's a lot of info to tell here and i'm afraid i'm leaving stuff out. as i say too often, but i will fill in the blanks later. or better yet, email or call me if you have any questions. anyways, this embolism sounds more severe than they really are? or am i just comparing it to stage 4 cancer? these complications freaking suck. can't she have one stretch of time to focus on the cancer, instead of these pesky to serious complications. selfishly, i was really looking forward to this week with angel not having chemo/lame-o side effects.

angel is dazing in and out right now, and her last temp read 103º! the nurse bravely called dr malpass around 2 am, to see if tylenol was okay to use to help subdue the fever. thumbs up. and now we wait. angel is still short of breath, and even has oxygen hooked up. it's quite the sight. i couldn't have imagined this a year ago. this pretty much effs me up to watch angel in this condition. it's unreal, and i have to stop myself and remember this has only been going on for less than two months! in her daze, she asks me if i'm getting tired of her, we have had this one sided discussions before. my reply is always the most sincere and just flows out of me. i can't imagine being with anyone else but you. and whatever i might be going through is minute in comparison. i am here for you. you are my best friend. my match. my soul mate.

i am exhausted from lack of sleep. good morning.

the time is 7:30 now, and dr malpass has made his rounds. because of the severity of the clot, he used the term 'rather large' clot in the lung, that she will have an upside down umbrella looking stint inserted (non-invasive) to catch any additional clot breakage that might travel to her lungs. and again, i will explain more as we learn more. he also suggested lovenox for at least a six month period, it's those lovely shots i gave angel at susan's. that's twice per day, and they cost a fortune ($13 per shot with 80% insurance coverage!). so we're hoping she can keep taking coumadin which cost pennies compared to lovenox. don't get me wrong, if she needs the lovenox, that's what we'll get her. her health is tops on my list. there might be confusion as far as what actually did not work (or worked too much), the coumadin or lovenox. she was on both, and then off both at the same time for three days until the fever hit. btw, the fever is down now to almost normal! guess we'll talk to malpass again and clear this up.
angel is now sleeping, gathering her strength for this little battle ahead. i love her strength about this entire situation. i love her so much. i love that she is so aware of what's happening to her body. never discount what she says about anything concerning this. she has rushed to the e.r. three times now, and was correct each and every time. and all three quite possibly could've saved her own life. she's become her own little hero ;)

i am off to see skylar, she's probably lonely and thoughts of abandonment have probably crossed her mind once or twice. i feel she has a sense of what's taking place. poor girl must be a little confused.

new years eve #14!

2007-12-31T17:29:00.000-08:00

i can hardly believe it, but this is the 14th new years eve angel and i have spent together. looking back to the first year in 1995 in chicago. nine of us between two cars. we partied, and celebrated. the next day on the return drive back to minneapolis, one of the cars broke down shortly after passing the famous mcdonalds in the highway overpass. we then all packed into a honda accord for the remaining 400 miles. three in the front and six in the back. people were literally piled on top of each other, much like the bunk bed position. anyways, tonight is another wonderful day to celebrate the end of the year, which was mostly filled with a lot of fun times with friends and family, new adventures, and of course the diagnosis.
we're enjoying a mellow night tonight, waiting in hunger for susan's spaghetti, and later plans to play the board game cleopatra. what a change this new years eve is compared to previous years. i must admit, i am not missing the anxiety of 'what to do', cover charges, deejays, cabs, what to wear, etc. it's just the three of us, and skylar, on the coast and looking forward to every moment of the night. i wish 2007 farewell, and eff you to cancer! i look forward to 2008 and all the new it has to throw at us. i am ready for it all.

happy new year!!

xoxo

back with susan & craig

2007-12-28T17:15:00.000-08:00

all is well, we are finally enjoying the time here. angel is mostly laying low on the pullout chair in the living room, she says it's more comfy than the hospital bed. susan had all this set up when we returned, so sweet. movies, and feeding her finicky tummy is mostly what's been going on, which is good enough for me. i just gave her her bi-daily shot of lovenox, an anti-coagulant which will help dissolve her blood clot (i found out after previous entry that her clot ran the length of her thigh!), along with a daily dose of coumadin. she is getting better though, and on monday we'll be back in aberdeen for a blood draw and hoping her level will be back to normal which is between 2 to 3. at discharge day it was 1.5.
man it feels like a long day, i'm beat down, and i left out too much in this post. maybe i'll revisit this, or maybe i won't hold my breath. dunno.

a note to self: write more often and be more light.

vacation and the emergency room

2007-12-26T13:19:00.000-08:00

this is a copy of the email i just sent out to family. i will update as things progress.

"hey guys,
not to worry too much, but i just wanted to update you about angel. we arrived at ocean shores yesterday, and this morning angel was complaining more so about a pain in her right leg. this pain started about three days ago, but she and the nurse at virginia mason assumed it was just sore muscle. but after a call to virginia mason this morning, we rushed to gray's harbor medical center where the doctor performed an ultrasound and found a large blot clot above the knee and below her pelvis. he says it's been there for some time, and that it can be a normal occurrence to chemo. she and i will stay the night here in aberdeen so they can flush out this clot and thin her blood. it's a process that takes a while, and can only be done naturally as her body does the work. we will be on our way back to susan and craig's tomorrow and continue our relaxing vacation."

5:59 pst
angel will be staying at the hospital until friday, or until the blood thinner meds kick in. also wanted to post an email response from our friend paul who is a resident doctor, his explanation is pretty much what the doctor is working on to keep this blood clot under control, and additional info:

"Anyhow, I hope things are well and she is tolerating the heparin OK. Then I guess she goes on Coumadin for a few months hey? These blood clots have to be treated carefully so that they don't cause further problems. Blood clots are a shitty complication of cancer. Mostly cause you have to be treated over a few months and coumadin interacts with many drugs, all things the docs will worry about and you should only be curious about...you've got enough to keep your focus: getting better!"

green lake afternoon II

2007-12-24T12:36:00.000-08:00

i'm back at revolutions cafe killing time while i wait for angel's therapy session. a partial walk around green lake, more like four blocks or so. the sun was exercising its rays, and was great to feel. we've had multiples days of rain, it feels like the full moon has been the only source of light for some time now. vitamin d does wonders to the senses. although angel was bundled up, the heat felt good. a lot has happened the past two weeks since angel last saw her shrink, and i hope this hour will get a lot more emotions out and things continue to make more sense. i must rewind to the previous appointment at virginia mason. she had her weekly iron infusion, and her nurse carol is by far the best she's had so far. her words are so comforting, even for me. carol keeps reassuring that the side effects are normal, and not to ignore them. she has pumped angel up with confidence with her gentle and understand speak of this beast. this is the third time carol has assisted angel, and they now farewell with hugs. i was lucky enough to get one of these last week.
so here i am, waiting on design edits for a project i'm working on to prepare a client for macworld. work has been good, outings to tully's has been a good environment to work, with free wifi too. i read that tully's pays $50 per month, per store, while starbucks charges patrons $30 per month for their service. too expensive and seems a little greedy. and it's been reported that they spend countless dollars per month for administration and support matters. seems trivial i guess. anyways, yesterday was angel's first real day of feeling normal after her treatment. we have to keep in mind that these days are just around the corner from the bad days. she received the same sort of advice from a man who is going through the same diagnosis as she is. a connection from renae's friend lynn. i forget his name (jeff), but i'm sure i'll be bringing him up more in the future. all good things though. i think they will both benefit from their conversations. i know i have already.
we planned to have xmas with pete, deneen and zade, but they all have colds, so we might pass since angel's white blood cell count is low. damn cancer ;). we head to the coast for the week and stay with susan and slick craig. we need this so badly, this is all i've been thinking about. it's our first time away from it all.
angel is done now, so i'll wrap up and add more later if need be.

have a good holiday, we will enjoy as well

xoxo

ps, we're back at home and angel just received a blog comment from kris carr, she's the author of 'crazy sexy cancer' and of the documentary. this book has been a savior to angel. the sunshine and angel's therapy went super well, so this is a little extra icing on the cake!!!

FOLFOXy lady II

2007-12-19T16:47:00.000-08:00

yesterday was session two of angel's treatment.
the day started with some fresh vegi juice and a bowl of cereal. angel's nutritionist has put her on at least 45 grams of protein per day (on a vegi diet, this number is harder to achieve than it seems) to help fight fatigue during treatment. this number has been achieved with high grain cereals, soy products (michael's fav tofurkey weiners have a whopping 26g!), banana flax almond cereal (10g) not including soy milk, almond butter, smoothies with teaspoon of flax oil and whey powder. her appetite is still a wee finicky, but eating hasn't been too challenging.
we prepare for the day with packed snacks and a vegan sandwich for angel's afternoon consumption. we get to virginia mason at 9 where angel and paige run off to the short stay room. i check in from time to time, but work mostly in the lobby where the wi-fi is kicking. work is manageable and feeling creatively productive.
angel is finished at 4, an hour overdue. the nurse was attempting to relieve angel's hot flashes and her itchy throat. the nurse, who i find out later during the car ride home, was frantic and annoyingly talking to herself out loud, gave angel 50cc of benadryl, instead of the recommended 25cc for first timers. which made her feel tweaked and looped out. then angel became irritated with the nurse and most everything around her. on the way home, she commented on a grasshopper colored mustang and said, "what an ugly color, who would drive that thing?" and then made several snappy comments to one of my lame-o stories, but i'm happy to say that she only bit half of my head off once we arrived home to my repeated questions of, 'do you want this, or that, or this?'. an hour later, paige reads that one of the side effects to one of the drugs in her treatment, you guessed it, irritability! supposedly lasting 10 hours. luckily for the remaining portion of my head, this side effect went away sooner than that.
i know not to take any of this personally.

to sum it up, her treatment went well as expected. her liver function numbers shot up dramatically which even surprise dr malpass. i heard this secondhand from paige, but dr malpass said something is working, the drugs, her diet. he wasn't sure exactly from what, but it's more important to see the trend rather than this number alone. i'm just happy that angel is putting up a good fight.

later that night i rented 'mean girls' and 'hairspray' for the girls to veg out to, i was in the other room enjoying a flick of my own, but i'm not sure how much of the movie the girls actually watched. paige is angel's childhood friend, they pretty much know everything there is to know about each other, which gives me the perfect opportunity to pull the juicy stories out of paige }: my grandmother reads this so i'll refrain, but if you really want to hear them, ask me offline ;)

tonight, i went to the pharmacy to pick up a new time release pain pill for angel, and while i was waiting for the order, i checked my blood pressure at one of those free stands. it read 125/91. the generic chart indicated the following: pre-hypertension/stage one hypertension. hmmm, my health insurance kicks in on the new year, perhaps a check up is due. although toni says i am normal, except for the 91 part. i should look into a new shrink since mine is on hiatus.

while i was at the pharmacy, toni was at our place whipping up a scrumptious bruchetta concoction of (it flipped my taste buds out, yum!) all chopped kimchee base mixed with ginger, cilantro, smoked salmon, peppercinis, roasted red pepper, gorgonzola, and tabasco sauce all on top of toasted french bread! she threw down, i threw down. angel had her staple of pintos bean, tortillas and homemade pico de gallo. i don't think our food tempted her one bit.

angel has been meditating/sleeping for the past couple of hours, i think she's due a pill of some sort, so i better go find out.

good night.

it's saturday night...

2007-12-15T22:06:00.001-08:00

...and i am writing, and angel is meditating. there is no place in this universe i would rather be than here at home and close to angel.
tonight wes and kelley made an excursion over to cloverdale with a bundle of yummy food and gifts. it was great to see them and also for them to see angel and how beautiful she looks. i am privileged to have so many excellent friends.

princess day

2007-12-13T16:54:00.000-08:00

emmanual the fabulous (no joke when i say fabulous, have you ever seen moi with a bad hair day ;) set up a princess day as soon as he found out about the diagnosis. does she look hot hot hot or what what what? grrrr!

today was (is) an amazingly wonderful day. first time in awhile angel woke up in the morning without a gasp of urgency, as if waking up from a nightmare (she emulated this look of terror the other day, and i still can't get it out of my mind). she ate some cereal and a glass of my juice concoction (opening up a juice bar has crossed my mind once or ten times) for breakfast, and then a solid morning-early afternoon of productivity with my work. i'm now working primarily in the kitchen to be closer to angel. it comforts me, as it does her. and that i'm only 10 paces away from grabbing her face soap or wash cloth after she forgets to bring it into the shower with her. (this used to drive me nuts, but heck, now i can tolerate just about everything).
at 2 o'clock angel had her 'princess' day with emmanual. we've been hooked on him ever since susan introduced us all. he was excited to experiment with some vegetable dye on her, but he was lacking a piece of equipment, the big sit down hair dryer contraption. but as you can see in the picture, she is looking hot damn without it!

during this, i was thinking a lot of amber who was undergoing a colonoscopy of her own. a procedure that was pressed upon by dr malpass, angel's oncologist. the immediate huber family does not have a case of cancer, so the bowman side seems to be the culprit. but who am i to blame? nice going leroy ;) i was naturally concerned when i heard three polyps were discovered and removed successfully. it doesn't seem right that a healthy 26 yr old female would have any at all. angel tells me that through her own sacrifice, amber is able to live a healthier life. as adults, they have been very close, but when the c word was thrown in the mix, the closeness and their love for each other multiplied exponentially. i haven't talked with amber yet, but her doctor said she will have regular check ups every five years. it seems it should be more often, but who am i to say, my wife only has cancer. xoxo

angel and lan are chatting away equally in lengthy conversation, and feels exactly like old times (minus the sound of beer bottles clinking away, and the countdown to how few beers remain in the fridge) and this makes me feel really good that she is having fun, lan is having fun, and that i am blogging this nonsense. i've explained this to toni and lan before, but when they are here with us, i feel like i can drift away and not worry about all this. that i can feel like everything is normal again. but not that i am repressing or hiding either. that sounds confusing, but it makes sense to me. it's just a really good feeling.

on heavy days, i will check back to this entry and take in this perfect day once again.

cheers to the natural path

2007-12-12T14:41:00.000-08:00

cheers to healthy drinking! thanks again for the juicer susan, xoxo!

beets, carrots, pear, apple and ginger. the smoothness of the carrot and beet with the sweetness of the pear and apple go down so nicely. and then the sting of ginger in the back of the throat. mmm-mmmm. i'll find some good use for the fibered pulp later on. maybe some bread or pancakes? um, maybe...eeks.

green lake afternoon

2007-12-11T15:25:00.000-08:00

i dropped angel off so she can get her head shrink wrapped. angel told me that her therapist has a good vibe and experience with people surviving cancer. this is good. so an hour to do away with, i ran skylar at the park, and played fetch with random sticks, she's such a good girl. yesterday i bought her a little present, a super bright pink collar to femme her up (we refer to her collar as underwear since it's the only article of clothing she ever wears, we're dog nerds). my mother in law says she looks like a boy dog, rightfully so, she wears a dark brown leather collar with silver studs that gives off that impression. actually most people mistake her for a boy. she sports black fur (fur? or hair?), and is very athletic. maybe we should've named her pat. i jogged back to the car for a block or so, it felt really good. i think i'm going to pick up running again, but this time stick with it. i walked past roadrunner and thought i should treat myself to a new pair of running shoes to help motivate myself. i have a couple beat down ones, but i'm afraid they've seen better days, and are mostly used for mowing the lawn. actually angel is due for another pair soon. perhaps i'll start with her first. a few months ago, her trainer suggested she hang up her broke down running shoes, so probably good timing. i think about my health all the time. naturally i guess. exercise helps move food through the body (and all the other obvious reasons too), and my eating habit is fairly good, but working on it to be even better.
next stop to wholefoods to load up vegis and fruits to juice. susan sent us a wonderful juicer last month which i finally cracked into. a cup of pressed carrot, apple and ginger was the perfect kick start for angel this morning. lunch was a cuc sandwich with live sprouts, between brown rice bread and lightly warmed up, pickles and a handful of sunflower seeds. anything she enjoys is worth doing again.
dinner with pete, deneen and zade tonight, and then back to work for me.

one month ago today

2007-12-10T21:26:00.000-08:00

a month has gone by already and i'm a wee bit thoughtless about it all right now. i'll continue this post in the next couple of days after my head clears a bit. but quickly, marc and liz stopped over with a gift of a vegi (huge-mongo) burrito, minus cheese. angel's craving which started this morning at the hospital during an iron infusion.....she came back for another serving about 20 mins ago. she said the portion i cut was too large. so i said i'd help out, but i haven't heard back from her yet ;). i am so happy her appetite is somewhat present. i am going to bed now and rest up for another perfect day.

weekend warrior

2007-12-09T17:59:00.000-08:00

just wrapping up the weekend of fun and visits with friends and guests. saturday brought a sunny day of opportunity. angel and i walked across the street to the park with skylar. we play the usual fetch and the most entertaining game of hide and seek. i throw her toy as far as possible and then go run behind a tree waiting for her to frantically sniff us out as if we've just abandoned her. but the whiffer is still in excellent condition. it feels like old times when life was much more simple and carefree. angel was warmly bundled up, with the scarf over her mouth and nose to keep the slight side effect of breathing cold air in at bay, all from the chemo. in the worst cases, people get a false sense of suffocation when they breathe in the cold air. how pleasant. i could be at the park everyday for the rest of my life with angel.
we head back home and get ready for a night with pete, deneen and zade.

today we met toni at norm's in fremont, the usual sight of man's best friends sprawled around tables and booths. well behaved and thinking the last time we were at norms we brought skylar along on my 34th birthday for a late lunch.
i did a little work as they watched the seahawks beat the cardinals. being out and about is possibly the best therapy. observing the components of life move like clock work. waiters bustling orders around, patrons eating their food, cars and buses driving by, and the occasional homeless person asking for loose change. and i think how do people with cancer fit into the mix of all this? my life is pretty much consumed with cancer, i even wondered how many people watching the football game have cancer, and then how many people who don't have cancer have a loved one with it? but i know the answer is too many.

i got pretty upset yesterday over young cancer spouse blogsite, i must add though, the concept is amazing. it's an online support group for young people (roughly 20-40 year olds) dealing with their spouse and cancer (unfortunately there are too many of us) i started by reading the bio of the woman who started this network, all wonderful, until she explains the loss of her young husband, and that she is now with another man, hoopty effing dootie! this caused a pit in my stomach, a lighter version of what it felt like to hear the diagnosis. the usual feeling of panic set in. before all of this, i was ready to talk to toni's friend anthony who is a seasoned nurse at an oncology ward, and ask him the heavy questions about andocarcinoma colon cancer stage 4 and his own experiences with patients. answers that will probably punch me in the gut. but i decide i am not ready to face those answers quite so soon. and quite possibly young cancer spouse too.
i complete my introduction into this 'club' to which i wish i didn't qualify for, like i was trying to sneak in and they'd bust me and throw me out! but minutes later i get several 'welcome' to the club responses. 40 year old greg was the first to welcome me. he was my age when his wife was diagnosed. i read his profile and followed up with his wife's blog, found out she quite possibly may be losing her battle! shit! i start thinking, and it feels like a bad trip, funneling downward, thoughts of cancer with angel's face plastered all over it. i stop reading. i'm in a funk, and try to hide it. i'm pissed at myself, and with the blog! it feels like they ambushed me, and lead me on with, 'you're safe here, happy happy cancer' and then a 'eff you! have a nice life alone'. i will be back though, i know everyone on this site is honest, caring, helpful, and dammit all too young! i'm not emotionally ready for it, and just a big fat chicken shit right now.
i can't stop thinking about it and it shows. shortly afterwards, angel tells me that she knows something is wrong and asks me to tell her. but first i ask sasha if my face was that revealing. kind of, but angel knows me best and knows for sure. i explain my face and the therapist tells me to stop reading too much into things, and reading into bad stories and outcomes. it won't happen to her, she won't leave me, and we have 24 embryos to use. i know this and i have to believe it.

tonight we are alone, not lonely, but without family or friends here at our home for quite a while. angel walks into the kitchen and i ask her if she's okay, she thinks so, and starts to cry (it's more like a soft wailing, and is usually about how heavy this whole thing really is) i listen and hold her, and then a conversation follows. it's not a cry out of weakness, or being it, but a combination of mourning her perfect life before cancer and letting her sadness flow out to gather more strength to face this cancer.

around the house

2007-12-07T15:27:00.000-08:00

today is my monday. run errands, do last minute preparation for wintertime. our drafty little house is going to be a little less. i didn't realize how much cold weather comes in from the front sunroom. the french doors are old, and a failed attempt of replacing them last year (i measured the doors about three inches shy on either side. angel will forever talked trash to me about his), i decided to do away with the shrink n seal windows and door kits. with the help of nate's engineering mind (i am a doofus), we managed to cover the window above the kitchen sink (i huffed and pissed a bit, lost a battle with the tape, realizing that i need to vent more about this cancer bug more often so it's not displaced onto minute things such as this) the french doors were covered and the area felt much warmer already. this area which also stands as angel's 'survivor-meditation-reading' space, i hope to get a shoji screen with sliding doors built one day, but for now it's open and airy. staying busy is good, and appropriate too since i am back to work preparing a client to show at macworld 08. i am really looking forward to this, and if all goes well, i plan on going down for a couple days too.
angel, sash and nate are being tourist nerdies today, visiting deneen at the market and of course the flying frigging fishes ;) it makes me feel good that angel has the energy to do these sorts of things so early on. i am confident she'll have many more days soon to come before we get back to living our healthy lives once again. sash and nate are loving people with a healthy appetite for life and laughs. they've been easy going and just going with the flow. last night angel said that she is sad and a little anxious that friends and family won't be around as much, but made her feel better at the thought of the amazing support groups we'll be attending, learning about macrobiotics and just like us, family and friends want to get back to normalcy too. but regardless, they will always be thinking of her and ready to support her in the same loving ways as they have always done.
last night, lindsey and erik stopped by with food and the always welcomed conversations. it was nice to feel 'normal' again, with normal people. it was one of our first taste of the outside world other than family. later on, nate and i failed miserably by going out to a bar in georgetown. just the two of us, guys being guys, but one yawn after another, we sipped a beer and headed back home. i really appreciated it though.

5fu

2007-12-05T18:57:00.000-08:00

day two of the fanny pack with the 5fu drip. i tell angel she looks like a bad tourist from the 1980's. she usually laughs at my lame-o jokes, even during all of this. a big reason why i love her so damn mucho. today was good a day. toni and alana spent the night, always a comfort. in the morning i was ordered to scan the living room for another dead present saibot might've dragged in. i hate him for making this a regular, and for pulling this stunt on toni over the weekend. his animal duties is what i think which bars me from exiling his free-loading ass. btw, he's angel's cat.
a day at the grocery store, some much needed lunch to feed angel's thank-the-lord-or-whomever healthy appetite. sauté eggplant, zucchini, onion, roasted red peppers, on foccacia . a nap and then i'm off to pick up sasha and nate from the airport. five days of help and comfort. much needed in this household of two and three mostly loving animals.

FOLFOXy lady

2007-12-04T15:00:00.000-08:00

8am, the big day. the battle begins. i am so hopeful the treatment of folfox and f5u drip will rid the monster that hosts angel's liver. i think it's too early to really start feeling much other than, let's get there! we arrive at vm and settle into her room. it's nothing like what i had imagined it to be (chemo orientation was one week prior) a big reclining chair, small flat screen tv, mini fridge (not like a mini bar, everything in it is free!). angel is prepped with anti nausea pills, a pint of iron, and then the mix of chemo meds. the abbreviated name of the mix is called folfox. i'll get the names of these drugs memorized one day. but the 'fol' helps the 'fox' and then another one that inhibits the blood vessels that feed the tumors.
angel is in high spirits, and joking around with the nurse. i brought snacks, drinks, and of course her sudoku to occupy the seven hours or so of this round. toni arrives, and 15 minutes later the chemo drip starts. angel makes this look effortless. the drip runs into her port, which actually got cleared up after two failed attempts, and there she sits. drip, drip, smile, drip, drip, laughing, drip drip, eating, drip, drip.
i know i am not being totally clear, or at least it's how i feel inside about this f***ed up cancer thing, and how abruptly this just effed up angel's life, but though it's only the beginning, we are fighting with everything we have to regain the perfect lives we once had.

two dozen embryos

2007-12-04T08:37:00.000-08:00

i am so damn happy and proud that the fertility clinic was able to fertilize 24 out of 27 eggs!! the egg maturation size had to be a minimal of 18mm for a greater success. two days prior to the 'harvesting' only a couple were at 18mm, and most at 16mm and some at 14mm. so we were worried a bit. the doctors reassured that her age was a positive factor. which is also to her advantage to fighting this cancer. so 24. that's a good positive number. i'm skipping ahead a little bit, because i'm a few days behind. but angel finally spoke to her cancer buddy from georgia. southern twang and all, she is 31 years old, but five years ago she was diagnosed with the exact same cancer. after nine months of therapy, she has been in remission ever since. she also conceived and gave birth of her second child (first child was before the diagnoses) even though freezing embryos for later use is a last case scenario, this has given angel new hope that we might still be able to do this on our own. this was a touchy subject a few weeks back, but learning that this is possible (don't get me wrong, it's still not that easy. going into remission during early pregnancy is not good)) and hearing a positive end is more than welcoming.

retrieval and collect

2007-12-02T06:34:00.000-08:00

the weather held out. a quick 15 minute drive to swedish medical and free parking! i love sundays.
angel was prepped by the anesthesiologist. she explains this will be nothing compared to what she experienced with her colon surgery. which is a small bit of relief. most people we've come in contact with have the most amount of empathy for her and her young age and type of cancer. i'm surprisingly under control and calm, the tough parts of not knowing are well behind on this portion of our strange trip. the surgery is suppose to last 15-20 minutes and a quick recovery from the anesthesia. nourishment of gold fish crackers and juice are in waiting.

i'm watching angel from outside the doorway of the o.r., back dropped the north east view of first hill as wet snow flakes fall. it's a calming sight, but i'm feeling a little sad that she has to endure anything other than treatment to take away the cancer. i'm hopeful the retrieval will be a big success.

it's 7:45 and now it's my turn to harvest some of my own (38,000,000 count, i love them zeros) but damn it's early! fast forward >> i roll over to starbucks for a decaf ginger mocha with whip. better than a cigarette and goes much better with this snowy-wet weather. i head back to the 10th floor and i think of all the people who helped us out with this process. my amazing parents presented the bulk, and more family and friends stepping forward. i can't thank all of you enough. angel cried in joy with all your generosity, and of course a little bit of sadness that we are even in this predicament of last resorts. thanks you cards aren't going to cut it, even though you'll see them, but perhaps a baby with the world's longest middle name would suffice.

the surgery was a quick 20 minutes, just as promised. angel was a little dazed, but fully recovered within 10 minutes. they retrieved 27 eggs, and about 12-15 should be mature for fertilization. we are happy about this number, and also that this experience (which began the day after angel was discharged from virginia mason) is now behind us and she can focus on the monster at hand. next phase is fertilizing the eggs with my sperm, a process which should be completed by tomorrow morning at 7am. what a strange concept. the doctors and nurses playing birds and the bees.

we're back at home, and angel's eaten a light portion of pesto pasta, apple sauce and some sunflower seeds (all good sources of vitamin e). a dose of spiderman 2, and then some long awaited greek food with my parents at 3.

free saturday

2007-12-01T16:54:00.001-08:00

finally a day to recoup, the first day since the diagnoses angel has been liberated of appointments, tests and phone calls. it was her day to sleep in, a day in bed, sudoku and re-runs of project runway season two. it is the day before our last fertility visit when they harvest her eggs. she had her final shot last night at 8:45 pm, to prevent her body from ovulating. she has 12-15 follicles that are 'ripe' for the picking, or 18mm wide. this shot is injected exactly 35 hours before retrieval, no more, no less. they tell us it's precise and that we need to be at swedish medical on sunday morning at 7:15 am sharp for intake and then 'minor' surgery at 8:45. but as things have gone, and are continuing to go, hurdles are still being thrown our way. this time, a steady snowfall that's sticking has angel worried that maybe, possibly something will cause us or the doctors to prevent this retrieval happen as planned. panic is set. i can't do or say much, i try and keep positive, reassure angel the weather is turning for the best, and tell her the jeep can get us there safely. its mighty 4x4 could use a little stretch. more project runway and the panic on the surface dissipates. moments like this i don't rehash, and bring it up again, i assume she has moved this in a storage compartment in her head to deal with it later or wait to see how it unfolds.

it's really quiet here on cloverdale. teener shuffles into the kitchen (where i now have my workstation set up, okay, just my laptop, but what else do i need?) the soft sound of each step accompanied by her claws tapping on the hardwood goes for a little drink of water. i can't help but think how easy she has it, how easy skylar has it, never mind saibot. though angel wonders if skylar is sick since she's been ripping ass morning, day and night. i think no, but she's smart and i know she senses something is skewed. mom's not her usual self. i think she's giving angel time to heal from whatever it is, and will be back to her normal self once she gets better. but what do i know about doggy psychology.

under review

2007-11-30T12:44:00.000-08:00

regence blue shield insurance: "pre-existing conditions are now up for review" what a blow! not now, not another hurdle. we've barely begun this process. it's only been three weeks of the eve angel was diagnosed. the only focus on our minds are obvious. it all started with a very innocent phone call to regence. angel called to see whether or not the nutritionist specialist fees were covered during her chemotherapy treatments. i'll back up a bit. the past week we've been looking into a specialist at virginia mason to guide her body to a healthy diet while she undergoes chemo. this is especially important since angel has lost close to 20 pounds the past month (good bye weight watchers, you sucked anyways). the liver does an incredible amount of work other than just squeezing alcohol from my beer. we're learning that a failing liver causes loss of appetite, the ability to digest foods properly, fatigue, and leaves you in a vulnerable state (to list a few). so replenishing vitamins and nutrients during chemo is key to good health, and everything else i don't know of yet.

the specialist at virginia mason is booked until the first week of jan. the dilemma is that angels' first round of chemo ends by then, so angel was looking for costs covered for a visit to the nutritionists private practice, the answer was 'no', regence does not cover private office visits. seems awfully strange that a health insurance company wouldn't want to see one of their customers be well taken care, in the long run this could save them some money. annoying. still panicking.

the first round of bills was question #2. a can of worms! i'm not sure how the actual conversation went down, but i was in the kitchen when i heard angel went from talking to crying. i run in i see her crying and my blood pressure drops, or rises, (which ever makes the head go light) and panic sets in. she explains the ordeal. i lose it. what!? how could this be? i lose it. then i calm down when angel assures me she is going to fight this tooth and nail. could i have expected any less? she rules.

it's now an hour later and phone call with deneen: i tell her the latest, what can we do really? also, this was no doubt going to be up for review since being such a new customer of regence. also, reminds me to talk to dr malpass, re-read the fine print on the health insurance contract. all good things, but to stay calm is the key. before hanging up with deneen, she says that now we just wait for regence to mail something, anything. but then told her i was holding the daily mail, and in my hand were two pieces from regence.

regence sent us a copy of the letter they've sent to virginia mason regarding pre-existing conditions from may 07 to present. i don't want to jump the gun, but we look like we're in the clear. knock hard on wood! angel wasn't diagnosed until nov 10, and was never treated for pre-existing anything except for a prescription for iron for her mild anemia (she declared this on her application) which was all out of pocket.

i hope this blows over, if not, angel vows to kick some ass. you better watch out, with cancer and all, she's a fiery, strong chick. hot too.

discharged

2007-11-30T12:42:00.001-08:00

coming soon....

: out

2007-11-30T12:41:00.001-08:00

coming soon.....