48 posts tagged “cancer”
How is it that I can't steal a few minutes to post each day? I really ought to. Things get away from you when you wait too long---
The cancer situation:
After the July 16 scan showed new nodules in my right lung, I was referred to UC Davis for a consult and possible participation in a clinical trial. They took FOREVER (over a month) to review my records and give me an appointment. When they finally called, my appointment was the next day. And after all that, I got a "Fellow" who did the entire work-up, and got the main oncologist, who answered questions for 10 minutes. All they really want is to recruit - no interest at all in what's going on with you. He said, "You should be the poster child for lung cancer", as he was leaving the room. He seemed surprised I was so chipper, and the trial coordinator asked if I wanted a job! Problem is, with the Fellow and trial coordinator also in the room, I don't see how the doc could ever say something like, "This isn't very promising - don't do it." In not so many words he suggested returning to Tarceva as a single agent if I hadn't progressed.
I went on Tarceva (one of the cancer drugs I was on the past 2 years) as a single agent six weeks after my scan. It's Day 17 and still no rash, whose appearance and severity supposedly indicates its effectiveness. I'm getting worried that it no longer works, but overall pain has diminished, which I don't think is purely subjective. The accompanying fatigue is something I don't recall from last time, but maybe I felt so crappy I was just happy to breathe. If I have to move on, the next plan is a clinical trial (which can be scary, especially since I was in the "placebo arm" last time). The doc thinks the Halichondrin B trial at Davis, but I have other ideas. I'd rather do a targeted therapy (another inhibitor of some kind, like XL-184 or BIBW 2992, which isn't being tested anywhere near), and save the systemic chemos for last. It's difficult, trying to come up with a treatment sequence that balances quality of life with extension of overall survival. Research measures significance in increments, like 2 months. In real life one measures significance more in terms of quality of time, rather than length.
Recent brain MRI is clean, which is a relief for now. I was getting some crushing headaches for awhile. Also, three cheers for Naomi and Carolyn, whose continued strength, survival, and amazing characters keep me sane and inspired.
Househunting:
Still trying, though it's even more difficult now that my focus is on treatment and hubster's is on the string of non-stop, month-long work events that occurs each fall. Neither the hubs nor I care that much that we lost on offer #8 (large, half acre, end of the road). Maybe we're not really serious...It's just hard to do this when one person's perpetually gone and the other doesn't have alot of energy. Anyway nothing even approaches the disappointment of losing the house with the pool and outdoor kitchen. I bucked the idea of a pool for awhile, but I've reconsidered. These days I don't like to swim in open water because I can't rely on my lungs. Perhaps I don't trust others to save me, either, because most people are too busy enjoying themselves in the water with you to realize you've cramped or whatever and are going down. I suppose I could wear a lifejacket and fins, just to aid the confidence level, but building endurance is a priority regardless. So I'm all for a pool, now.
What else? The gardener pruned my sister's lemon tree and rather than waste so much fruit, I've been making (Morroccan) preserved lemons, lemon marmalade, lemon curd, lemon chutney, lemon ice cubes...I'll get to the Limoncello eventually...
It's a huge time-sucker, canning stuff. It's also therapeutic in a strange way. However, I now need a bomb shelter to store all this stuff.
The hubster's constant travels have a strange effect on my daily living. When he's home, I can't seem to relax---I'm in constant motion, and I'm tired. Is it the cooking, cleaning, laundry, running errands? True, I don't cook or do much laundry when he's gone, but somehow I find time to sit out on the deck, blog, read, watch a movie, and still accomplish the hundred other things I'm supposed to do. The tv is OFF, which is relaxing.
Inspite of this, I miss him terribly when he's gone. After a couple of days on my own, I'm usually rested or more exhausted by some random activity, and I'd rather have him around. While he sits around playing Guitar Hero or Wii, he asks why I won't join him. The response is usually, You want dinner (lunch, clean clothes, etc.), or you want me to play games?
Finally, it's been a tough month all around. My heart goes out to those who have lost loved ones.
I don't need reminders of my own mortality, but it makes me reflect on the changes I've made since getting cancer. I hope I'm a better person, more compassionate and sensitive. I recall vividly my inability to empathize (or maybe comprehend) when I'd hear of someone's diagnosis, death, or even the death or suffering of a relative when I was well. I took the death of a stray cat harder than most events. Lately I mourn friends' losses and suffering, and I have an overwhelming need to try to alleviate the suffering of those who can't seem to on their own (my brother, parents). Sometimes that's the hardest, as it's usually bourne of a problem with no solution. Death is that paradox, conferring relief and suffering simultaneously--to the departed and the survived. I suppose my death will be a relief, but I've got a bit of fight left. I probably need to reconsider how best to spend this time, though...
The days are waning, the rain has come, there's christmas stuff out on the costco floor...sigh.
Oh yeah, I did enjoy the Sausalito Art Festival, which really is about art (no doodads here). I usually go south on Labor Day weekend--it's my Dad's birthday, but I thought I'd be in full rash by then. See what happens when you try to plan for side effects? (Did I mention I cut my hair in anticipation of hair loss?)
Going back on cancer drug Tarceva today, which is liver intensive. Not to mention the side effects (GI and otherwise). Kudos to the onc for sending an early Rx in response to a slight panic I felt after going to UC Davis and deciding not to enroll in a study there.
Well at least I drank a bunch of wine in Monterey this weekend. And, I'm feeling increasingly worse, so I'm ready. I just hope it works as well this time as last, and I hope the facial rash won't be worse (tho I don't know how much worse it could be).
I guess I better hurry and get that haircut/wax/massage!!
I feel weird. It's not rational of course. It's not like I was just diagnosed, but in a strange way I'm behaving that way. I think, if I give up meat, ice cream, stuff like that, the cancer will at least be stabilized. But I don't eat alot of "bad" things. I don't even eat that much meat, and what I do eat is "healthy" (free-range, grass fed, etc). I don't eat fast food, drink soda, and I don't eat dessert all that much. I don't use commercial salad dressing or spaghetti sauce, and infrequently use canned and processed foods. If I am what I eat, I should be semi-healthy, right? I see so many people that can't hike five miles carrying twenty pounds and I think---why are those people healthier than me? They eat fast food, drink soda, smoke, etc...And then there's the whole issue of people who get whole new organs and they're actually in very crappy shape! It's frustrating, sitting here with my handful of nuts, orange, and smoothie, reading clinical trial research abstracts and scholarly papers.
Sad, you know?
(I had to use this because the song wouldn't upload, so ignore the picture, just listen to the music)
Maybe we're not meant to buy a house in this friggin' area. 7 offers, people---Seven (the number we've attempted)! Ok, we lost the bid on the last one (see "Nerves" post) to an all-cash offer. Some investor threw down around $350k in cash and it was accepted. There were at least two other offers, and ours was considerably more, but cash is king, every time. I'm irritated, especially as Hubster's gone into desperation mode again, looking at things we wouldn't normally consider. And that effing short sale in Alameda...well, the bank's in no hurry, are they? The government's given them an influx of cash for the moment...they can stand to make us wait. It's been over 3 months since we made the offer on that ridiculous beater. Anyway...
I'm seeing the oncologist tomorrow. I've been feeling quite alot of pain lately. It's been over six months since my last scan, and my bone biopsy was in February, so perhaps it's time for a check. I would be disappointed but not altogether surprised if I'm experiencing progression. Like I've said, the doc never used the "R" word when he took me off treatment.
I've not been on a huge trip so I'm disappointed with that, but I'm thankful for the 4-1/2 month reprieve from chemo. Time goes by so fast. People's reactions are very interesting. I think most people believe I've been cured and things just go back to normal---I should be able to run around like I used to. I should work and recreate and carry on normally, but that's pretty far from the truth. No matter what, every day is a battle.
I went on Cancergrace.org to browse around, see what's new. It was difficult. But I've got to make myself face the fact that at some point, if not right now, I'll probably need treatment again, and I need to be ready. If that time is now, well...here we go again.
3 years ago today I was diagnosed with Stage IV lung cancer. I've been off treatment for 3-1/2 months. Inspite of these miracles, death and disease are never far from my mind, nor are my comrades in war with this monster.
So I dedicate this anniversary to you, for each day you've all fought so hard to win. You've all helped me on my way to this anniversary and I hope and pray you'll be with me at future ones.
I spent a day in Napa this past weekend and raised a few glasses of champagne to you and all the survivors and caregivers everywhere.
Love, strength, peace, and grace to all!
Things are so strange all the time, everywhere. I feel like the world's going to hell in a hand basket. Faster and faster with each passing day.
- Lay-offs. I know it's everywhere, you can see it in the thinned traffic on the freeway and the shuttered businesses. It's heartbreaking. It makes no difference that you've been with an organization for 30 years---the government doesn't give peons severance benefits. Is anyone feeling secure in their jobs? I personally don't know anyone. The Hubster's even thought of his options. They generally involve leaving the country. Which makes me wonder about---
- Homebuying. In spite of the supposed glut of houses on the market, everything we offer on has multiple bids (one had 31 offers). The only one that didn't was a short sale on which we've heard nothing from the bank (Chase) in a month! So we're making another offer today on a rancher in Pinole. More on that later. Frankly, I'm too scared to buy a house right now, but Hubster is really caught up with it. Sometimes our priorities are so very different.
- Health. Even more heartbreaking than lay-offs, they go hand in hand, thanks to our lovely health insurance system. Those of us walking the razor's edge of treatment/functionality/hope have been doing it for quite awhile now. I'm heartened that we've hung on this long, but I can't help but wish for more. I've been luckier than most, so far, but feel horrifically insecure about everything---wellness, finances, relationships. I weep, hearing how my battle-scarred friends are doing (you know who you are). No matter what the circumstances or the brave face we wear, we feel alone and lonely in our fate. I don't think this condition can be helped. I try not to think of it too often, but it sneaks in there---putting me in my place, humbling me, pissing me off.
If it wasn't for the pain caused by lying in bed, I wouldn't be able to get up in the morning. So I guess pain is sometimes good for something. It's a reminder that we're still alive. Isn't that what they tell you in combat?
So, here's some bits and pieces on the health front. It doesn't represent my mental state of course (which is always dubious)!
Jacked up my arm somehow, a couple of weeks ago. It was paralyzed and excruciating. My 8-week oncology follow-up required a chest X-ray. The radiology tech made me lift my arms over my head which I couldn't do with the screwed-up arm, so he helped me. That somehow released it...but it was still painful.
Chest X-ray was good...I actually saw it. The giant shadow on the left lung wasn't there. It was peculiar. Dr. Simmons said it was a good report. Alas, I had to tell him the bad news: that I felt like crap, run over by a Mac truck, beat with baseball bats nightly. He hoped for a 10-minute visit---it was over an hour.
I got 3 x-rays of my shoulder, saw an orthopedic doctor, got labwork, picked up a huge bottle of strong Motrin, went home and passed out. Two days later I got a CT scan.
I have to go to physical therapy. My shoulder is taped up. I have to do exercises on this pulley contraption. Next week I have acupuncture.
Labs are good. Everyone keeps saying, "Your creatinine is fine." It's all about my creatinine. CT scan is also good. It's stable. The tumor in the left lung, if it's active (remember it didn't light up at the last PET scan), seems to come up with different measurements---it's either longer or wider by .3mm, but the sum is the same, so they call it stable. I've got cysts in my liver that haven't changed, a fatty lesion on my kidney (no change), and numerous sclerotic (scarred) lesions on my spine. It details exactly which vertebrae, and really they should just say, "All vertebrae EXCEPT T1,3, etc..because there are only a few that are unaffected.
The radiologist supposedly (see how skeptical I am) compared this scan to previous PET and CT scans, and even to a scan from 2006. They call my pain complaints "arthralgias" --- is that arthritis and myalgia combined? I think so.
So I'm supposed to take Motrin everyday. The physical therapist says it takes a long time to normalize. Then she asks me, "How do you stay so positive? Or is that just the way you are?" Funny, I'm the serious, think-too-much person in the family.
Well, the skin is recovering slowly, plagued by hyper-pigmentation on my legs. I may be able to wear dresses this summer with the help of judiciously applied concealer. The super-long eyelashes fell off one eye but are hanging on the other. The eyebrows have filled in and my hair resembles brillo pad fibers. I'm still chunk-style, and I've been warned against losing weight. However I'm intent on regaining all the muscle tone I've lost. I'm hoping it'll help with the aches and pains.
I can't help but worry a little. I should be more vigilant, seeking possible new treatments. I don't know how long I'll be well. I'm fearful of metastasis to my brain and/or liver. But I also want to live. I've been thinking of getting a part-time job, as bad as the competition is out there. I'm thinking of travel more than ever, although buying a house is more important I guess. I again wonder why I haven't done anything significant on the creative front.
I've been eating grapefruit (which conflicted with Tarceva), lots of sushi and raw oysters, and I've been drinking. So there it is.
We're "going naked", as the oncologist likes to say. No Tarceva, Alimta, or Aredia. EEK! "Take the leap of Faith!", is what he wrote on my after-visit summary. The clinical trial nurse says, "You do need to celebrate this."
I got what I wished for, which was to see my 10th wedding anniversary to a wonderful man. I may make it back to my home country yet.
Fearfully Ecstatic. Scared to death, cautiously optimistic.
Chest X-ray or CT scan and labs in eight weeks, and visit with oncologist.
You know how hard it was for me to let go of that study drug bottle? Crazy I know, but at this point, I don't like having my food dish moved. I'm off the clinical trial. How scary is that? No more free Tarceva.
Yet...yet, I look forward to banishing the rash on my scalp and growing hair. I look forward to healing a bit.
I'll try not to be afraid.
It's inexplicable. Even the oncologist is hard-pressed to believe that someone with as much disease as I walked in with could be alive and going off chemo almost three years later ("Be careful what you wish for cuz you might just get it!"), but he doesn't want to treat something he has no evidence of.
His last e-mail said, "Here is the copy of the bone bx (biopsy) report. They show no evidence of residual cancer and so it is time to stop the chemo, as we agreed..."
I don't trust those radiologists (except Arthur Miller, the felony attorney/radiologist). When they did my lung biopsy pre-diagnosis they collapsed my lung and didn't find any evidence either. So I'm weary. The onc says they got a sizable chunk-- 1.2cm x 1.2 cm x .5 cm---my bones are very dense, probably due to the biphosphonate (Aredia).
Still...
After I have a few drinks (spread over a few days), I'll go back to eating that damn asparagus puree (supposed to be a lung cancer cure), become quasi-vegetarian, start exercising seriously, see if I can't gain a few weeks of freedom.
I hope this house hunting endeavor doesn't make me sick!
Naomi---please press your doctor for targeted treatment. I truly believe it's your best hope.
I'll try to direct as much of the positive energy I gain from this across the universe to everyone I know fighting this disease. Please have Hope!
Thank you Jesus, Buddha, Allah, the collective unconscious, Mohammed, etc. and everyone who gave me water from Lourdes and prayed for me and so generously supported me thus far!
With all of today's technology, my bone biopsy was conducted by a radiologist who hammered a needle through my buttock into my left hip with a small hammer. "Primitive tools", is how the Hubster described them. He thought his sonic sampling equipment would've been perfect, if only he had one in needle size. I felt every pound on that little hammer, and it felt like a jackhammer, actually. Yes, I was awake! Sedated, but not enough to prevent me from saying, calmly, Uh, that hurts. ALOT! And then I moaned a little. I've never moaned. I'm not a moaner. Really. I gritted my teeth and focused on the cramp in my neck instead, and the thought of making an offer on a house and whether my financing was lined up.
The doctor equated my dense bone to a lump of concrete. He said it's so dense, it doesn't take up the radioactive sugar solution, hence the negative PET scans. Hubster understood that early PET scans were positive, but they were tissue areas. Now the tissue areas are negative, but it sounded like the osteoblastic (bone) lesions, which are sclerotic, have grown over time. So a negative PET says nothing about my bones. BUMMER.
I'm a bit scared of what the results might be. I originally thought it might be a source of hope, but now it just sounds like a confirmation of what it means when cancer goes to your bones (it's incurable). I won't know until next week. Until then, we're making an offer on a house, I'm using the cane Tara gave me (yes, I feel YOUR pain, Tara), lamenting the lack of percocet (really, Vicodin just doesn't feel like anything once you've had Percocet), and waiting for my Mom to get here. Hubster does NOT enjoy the caregiving thing. He's spoiled and says I'm only allowed to be sick one day. He's the one who called Mom for backup!
So all that technology you see on House, MD? All television. They're still using picks and hammers.
It's been a crazy week for treatment. I had a last minute PET scan prior to the bone biopsy I'm having (tomorrow). If the PET scan was negative, I'd proceed with the biopsy. If it was positive, well, then, I still have cancer. So it's negative, and I'm going in tomorrow for a procedure I've been told is quite painful. :O
On the one hand I should be happy I've had two negative PET scans in a row---one from September 2008 and this last one. I should be very hopeful at the possibility of going off treatment, if only for a time. I can't help fearing the disease will return with nothing holding it at bay. Even though I've read accounts of my medication, Tarceva, effecting complete remission in some patients (amount of time unknown), I don't think I'll ever really feel "safe" from cancer. The thought of growing normal hair and not having a perpetual rash is, however, a sunny thought.
The things I've done to battle the beast---exercise and "green food", acupuncture, tea, prayer, etc-- I didn't practice with any depth. I've merely dabbled. Would being declared cancer-free bring about a complete change in my health lifestyle? Probably more than being sick would. I'd give up more things, whereas being ill is a double-edged sword, trying to balance actions toward health improvement against the very same that give pleasure (important when one's life is short).
As for Acupuncture---I'm a believer, and I'd try to convince anyone it works. Acupuncture has decreased my pain and improved my well-being by leaps and bounds. I visited a different practitioner today, and it felt like I was on drugs afterwards---my body buzzed and tingled with energy yet my mind was in a deeply meditative state. I was surprised to find myself in such a bright room. My inner eye was in a very comfortable darkness I didn't want to leave. It's happened at other acupuncture sessions, and during one massage. It's an amazing feeling.
That's the scoop!
