"Austin's personality causes him to moderate feelings of happiness, so that he does not feel like he is making the mistake of assuming that things will remain good forever. This is not pessimism, but rather a desire to have his emotional state be rational and acceptable to his intellect."
A quote from one of Barbara's comments. It perplexes me that I cannot deny or verify this... it has the scent of truth, though. Is my level of self-awareness sub-par, or are there insights that aren't so readily available from the inside looking out. I think maybe neither: Barbara just knows me pretty damn well.
Anyways... I'm doing well; getting back into the swing of school. It's funny how school is like a trampoline wall -- the harder you push, the harder it pushes back. Sure, I can make it through school with an easy push... but I *want* to work hard right now... I *need* to... and school, it's pushing back.
But that is what is so great about school. You can *never* do enough studying, so there's always something to do. It's not like a movie or video game -- when it ends, you say to yourself: "Now what?" With learning, it just doesn't end.
I've pretty much forgotten the whole cancer thing. All it means, at this moment, is getting up at a dreadfully early hour and getting zapped for a few minutes. 8 more to go and I'm done.
I get the feeling that this sort of victory is anticlimactic. Funny, that.
As for my memories. Everything was relatively easy, except for the BMT.
The BMT is something I just want to forget forever -- except for those beautiful moments that make me feel love. I remember Barbara playing Chopin on her laptop... talking with Liz via my computer... watching her knit... watching Barbara knit... and, of course, many moments with my Mom. But most especially when she wheeled me outside, late at night, when I was low. Those moments make me smile. They also make me feel guilty for not expressing my love enough... for not excessively iterating my appreciation, gratitude, and love.
But, with the good comes the bad. I try to forget, but whenever I think about it in detail, I end up in an emotional funk for the rest of the evening. Thank god I have a few beers in the fridge and an episodes of House and 24 coming up.
skip to main |
skip to sidebar
I will proudly wear it into battle!
"I think your stylus is defective"
Blog Archive
Synopsis
At age 26, Austin discovers he has Hodgkin's Lymphoma.
"This sucks," says Austin.
And there were many who murmured in agreement.
After three months, Austin learns that the Stanford V protocol has had little effect.
"Ok, what next?" says Austin.
And there were whispers of an autologous bone marrow transplant preceded by months of salvage chemotherapy.
"Bring it!" says Austin.
And indeed, it had been brought.
Traumatized and weary, Austin wonders, "What next?"
Life, it seems.
"This sucks," says Austin.
And there were many who murmured in agreement.
After three months, Austin learns that the Stanford V protocol has had little effect.
"Ok, what next?" says Austin.
And there were whispers of an autologous bone marrow transplant preceded by months of salvage chemotherapy.
"Bring it!" says Austin.
And indeed, it had been brought.
Traumatized and weary, Austin wonders, "What next?"
Life, it seems.
My Treasured Chemo Quilt
I will proudly wear it into battle!
A metaphor:
"I think your stylus is defective"
20 comments:
Hey A - good to hear you're busy and you're so close to finishing rads :0)
The anti-climax feeling is not by any means uncommon. Wullie is STILL stung by that feeling from time to time and I've heard many others say similar things....but it must pass at some stage?
And I suspect your family and friends know your love without you having to use words to express it.....so I wouldn't beat yourself about that! Keep doing what you're doing.........good to hear from you..........Vx
Update on Austin...
In general he is well. After he finished his radiation, he had a week of fever. He saw a doctor, and they did a lot of tests, but did not find anything in particular. The fever faded gradually. He also noticed some reduction in lung capacity, or easily getting out of breath when exercising. Considering the radiation treatment, perhaps he had some lung tissue damaged, which would probably lead to some fluid retention in that region, but that's just my nonmedical guess. In a few weeks he will get another PET scan.
Other than that, he is continuing in school and all is well. Keeping very busy. There is some nice news on a personal front too, but I won't mention it here.
Austin came by this weekend to hang out with us, though he also spent time working on his class software project, which is as you might guess, a game. It is amazing to see this child of mine creating works of enormous technical complexity.
His hair is in, and has a baby-like texture, soft with curls. It is hard not to pet him like a puppy. He looks healthy and has regained much, but not all, of his strength and stamina.
Austin and Liz just returned from a trip to Hawaii. They had a great time!
Austin is on summer vacation. His new haircut looks good, though he still has the fine hair of a much younger Austin. We had a family reunion, including his grandmother on my side of the family, and it was a great time. He wants to get his motorcycle fixed and running again. It is an oddly conflicting thought that perhaps he is more at risk of harm from traffic accidents now than cancer. However, he is the safest motorcyclist I have ever seen, and should be giving lessons to others. Including me.
Austin remains in good health as far as we can tell. He has started his last semester at UC Berkeley, and is under a lot of pressure. He is also preparing a portfolio of work to present as part of his application for the Masters Degree program he is interested in. We are all grateful to see him fully engaged in life.
Thought I'd check in, although I was taking the approach 'no news is good news', it's good to read updates via Skymist! Thank you - and here's to a full, healthy, accomplished life..........Vx
All is well! Thanks for checking, V!
One interesting thing. Before the AHSCT (the transplant) we had the impression he would have a very vulnerable immune system and would catch every possible cold and flu and be sick all the time until he built up some new immunity. However, he seems to have surprising resistance to viral infections now. I don't see him spending much time being sick with colds and flu at all. I don't understand that very well.
Austin had his one-year post SCT scan this week. His scan was clean, and there was no evidence of disease. The gratitude for his good health we all feel is immeasurable.
Austin has graduated (with an A average) from UC Berkeley now, and has accepted a well-paying job in software development. His personal life is going well. We watch him closely, as I am sure he watches himself, but he shows all the signs of good health. Now that he is an employed technical professional, he has good medical insurance too. He finds his new job stressful, mostly because it is new in so many ways - the demands on his time, the long commute, normal doubts about whether he is learning his duties fast enough or pleasing his boss. But overall, it is a joy seeing him dealing with totally ordinary, common, and reasonable worries, in a life which becomes more full every day.
So great to hear this positive update! Congratulations! I am a cancer survivor and I work for ChiliTechnology so thought I'd pass on some tips. The ChiliPad is a great thing for people who have medical conditions that make them too hot to sleep - it's a cooling/heating mattress pad. You can set any temp. you want down to 46 degrees. It also heats - if you need that. Unlike the electric blanket it keeps the electromagnetic field far away from the body - so doesn't increase your risk of cancer or get in the way of healing. It really helped me during chemo when I was getting sweats and chills that kept me up at night. Having a comfortable place to rest was a lifesaver. I thought your readers might be helped by this info.
I was wondering how Austin was travelling because my little sister is just about to have a SCT for relapsed Hodgkin's disease. She starts her salvage chemo tomorrow. Looking for stories of hope because it's been and will be a hard road. I am thrilled to hear that Austin is going well. Here's to many healthy years ahead.
Regards,
Jacinta
Here it is May, several months since my last update here. Austin still is in normal health, to our knowledge, and working full time at his new job. He says he's getting accustomed to the work, but is becoming a bit disenchanted with this job, possibly. Totally normal, I would say. His major health concern is that of his two pet birds, who have been having trouble laying fertile eggs.
Would love to hear an update on how Austin is travelling.
Another year has passed. Three things have happened to Austin, and one thing has not happened. What did not happen was a recurrence of cancer - his PET scan 2 months ago was clean. What did happen: he graduated from Berkeley with an engineering degree (with High Honors), he got a fine job with a software firm in Silicon Valley, and he married his sweetheart, who as standing by him all through his illness. We all remain so grateful to see this young man living his life fully. We are also grateful to the medical establishment which treated him, and remind you that dollars given to the Lymphoma & Leukemia charities really do save and prolong lives.
Saw your comment on Bekah's blog and it prompted me to check-up on Austin - What a wonderful update in December...thank you, Skymist. So glad Austin's life has turned around and hope that, as with my husband, the illness, for all that he would have preferred not to have gone through it, continues to make every day that little bit sweeter.....love to all....Vx
Assume for a moment you are a former Hodgkin's patient, have had a remission, but you begin experiencing some generalized itching. What is your reaction? You go on high alert, at the very least, because that kind of itching is one of the "B symptoms" associated with lymphoma. What is your reaction if you have the itching but you have never had cancer? You look around for causes of dermatitis - for instance, that acacia tree next door, shedding its pollen in your direction every night. Lymphoma is the last thing you would suspect, and it's the last thing your doctor would suspect as well. If it is your only symptom, hopefully you will be stubborn enough to go back to your doctor, to demand a treatment or diagnosis, and on the 2nd or 3rd visit he will finally order the Xray which will or will not uncover the suspicious mass that you hope is not there.
Anyway, as you can guess, this happened to Austin. The itching, the suspicion, the doctor visit, and then the PET scan. The result? Clean, no evidence of disease at all. A reminder to Austin that finally, after all that has happened, he has returned to the real world finally, where dermatitis is... probably just dermatitis. Check your local pollen-bearing trees, Austin. Use different dishwasher soap. Whatever.
Anyway, this is his 3rd clean PET scan, and he is now close to 2 1/2 years cancer free. He has passed the 2-year mark at which most relapses, if they occur, are detected. At this point, even the slowest-growing tumor would be clearly visible, if it existed, so we must happily assume that none exists. Now, on to that 5 year goal. At 5 years, his oncologist will declare him "statistically cured."
In other news, he and his lovely bride moved into a very nice apartment much closer to their workplaces. All of us remain grateful for good health and remind all of you that contributions to your Lymphoma and Leukemia Society really do save lives and keep hope alive for Hodgkin's patients.
It's another year later now. Austin remains in good health. In fact, his new health awareness has caused him to adopt multiple healthy life strategies, succeeding in weight loss, dietary improvements, and exercise, to the extent that his medical tests of cholesterol and other metrics show significant improvement. Success in other life endeavors continues as well: job, family, etc.
Austin's annual PET scan was clear once again. His oncologist says he will not be receiving annual PET scans from this point forward. Three years is therefore enough to assume that the chances of relapse are low, and the benefit of early detection is no longer offset by the cost or side effects of the scan. That's great news. Now Austin will enter a period of his life in which he will remain alert to suspicious symptoms, but he can relax knowing that odds are now so heavily on his side that for him, the "C" word now stands for "cured".
Post a Comment