It has been about three weeks since I took my first dose of Lomustine (CeeNU). Today’s blood tests reveal that my platelets have dropped (from 139) to 48.
I will re-test in two days. If my platelet production doesn’t pick up and numbers drop too low, I will get a transfusion.
I am decreasing my steroid (Dexamethasone) dose today. I’ve been experiencing many unpleasant side effects from it. My face is swollen (which isn’t unpleasant, just an explanation of the title of this post. My doctor called me Fluffy Face.
Increased appetite is actually a good side-effect. I’ve gained some needed weight. Now I just need to get back to exercise and yoga to recover my atrophied muscles.
In the previous post, I recommended watching the film, Forks Over Knives and declared I was cutting out meat again. I decided to look further into the validity of the claims in the film and now think that the film was biased and data distorted. Meat is not going to kill me. I’ll probably keep it to a minimum though. (Here is one source for my change of mind.)
Today I had my fourth chemo infusion. This time, Avastin was excluded. This is not good news because Avastin is the key drug that everyone has their money on as being the most effective at fighting my tumor.
Below the Belt
So the abdominal pain I blogged about previously is cleared up. Drain tube is removed. No more pain. Doctors are not clear whether I still have an appendix or whether it perforated/ruptured three weeks ago.
An MRI to see if this chemo regimen has been effective will be done in two weeks. Then we’re off to Duke to discuss options. Here’s a quick review of modern-medicine best-of-class tactics tried so far.
- Temodar — FAIL
- ICT-107 trial — FAIL
- Novocure — FAIL
- Avastin — FAIL
Shit, all the good choices are gone. Avastin MAY be reconsidered in the future. There are more clinical trials; more alternatives; MORE HOPE. I’m not concerned. At least, I don’t consciously think I’m concerned. I notice that I began erasing myself from LinkedIn — leaving Groups that are no longer relevant to me. I’m almost done creating succession plans for my freelance web and design clients. I’m not doing this because I think the end is near. Maybe I just don’t want to go back to that life or career. I have options for that when the time comes.
How am I Feeling?
Despite some bleak news above, I still feel physically, mentally and emotionally strong. The weather is fantastic. I’m dying to take my motorcycle out for a spin. The only thing stopping me is my own caution. No sense risking overdoing anything right now.
I was hyper-aware of motorcycles today though. On a walk today a bike passed by and I noticed how good it sounded as it’s deep rumble faded down the road. Same walk, I saw a young girl riding a Honda 50 that resembled the one I rode when I was 13. I vowed to revive my ’82 Shovelhead and do some Fall riding.
As much as I love cooking, I’ve noticed a decreased interest lately. Months ago a neighbor volunteered to sign us up for Food Train — a means for friends and neighbors to volunteer to drop-off a meal or some food. So I finally gave in. Here is a link for anyone interested in participating.
CT Guided Aspiration Drainage
I started my day with a gurney ride to Radiology. After downing a bottle of contrast, my food-starved, narcotic-fueled, sleep-deprived body was barraged by waves of trembling and voracious teeth chattering. Basically, reactions to being cold except they were very exaggerated. CT imaging revealed an abscess in the vicinity of my appendix. An area below my navel was numbed with topical anesthesia. I was infused with benzos to relax. I suggested they just knock me out! I really didn’t care to FEEL or remember the procedure. I did not get my way. But it was quick and mostly painless.
Two weeks ago, the oncologist assumed my GI pain was a kidney stone or urinary infection. Now, she suspects that my appendix ruptured. The goals of today’s procedure were to:
- remove fluid, thereby reducing pressure and relieving some pain;
- collect samples so that the Infectious Disease team can identify specific bacteria present as well as the proper antibiotics to combat the bacteria and remedy infections;
We need to treat infection with antibiotics to avoid, or at least post-pone surgical removal of my appendix. Avastin compromises cell health which would complicate recovering from surgery. Avastin is known to cause GI complications and is probably responsible for all this trouble.
I was released from the hospital today.
My own self evaluation of my overall wellness is entirely positive!
When unexpected complications arise, I’m reminded that October is the month for me that corresponds with the ominous 14 month death statistic. Despite a few recent hindrances, my physical, emotional, spiritual and mental well-being remain great. Plus, the tremendous outpouring of love and support for Tina and I is like a vaccination against despair. I don’t claim to be self-actualized or enlightened. I still fall prey to petty annoyances.*** But all-in-all, Everything’s Gonna Be Alright.
Too Much Information
A drain tube protrudes from my lower umbilical area and empties into a collection bag that I can strap onto my leg. Tina was instructed on how to flush the drain twice a day to keep it clean and clog-free in order to collect excess blood, pus and who-knows-what. I’m not sure how much fluid is expected to collect in this bag. It could turn out to be a good Halloween costume. Actually, it brings to mind, artist Andres Serrano!
*** some hospital experience examples, for the fun of it (and to waste more time)
#1 I understand that the statement, “How are you,” is a common and friendly greeting. But if I’m having an off day, it irritates me when hospital staff casually ask. I’m not going to retort with, “Fine! How are you?” if I am not. So I respond with, “Hello.” Or I deflect by asking them the same question. Most often, I don’t respond at all which is probably perceived as rude. I don’t know why I let this bother me. But I disappoint myself when I succumb with a fake, pleasant answer? Honestly, I’m not an advocate of political correctness but I think it would be reasonable for hospital management to suggest to employees that maybe a neutral greeting would be more appropriate when addressing their customers, the patients. Something like, “Hello” is probably fine. I know the topic doesn’t deserve this much consideration. What’s wrong with me?
#2 During my overnight stay in the hospital, I was checked on by a nurse every hour throughout the night either to change IV bags, evaluate pain status, take vitals, etc. So, it wasn’t a very restful night. When the morning shift change happens, it’s like the party gets going and the noise level cranks up. Then the new nurse comes in the room and greets me with a chipper, “Good Morning!” which sounds to me like encouragement to get up. Sorry — I’m laying in bed for two more hours. Can you keep it down!?
#3 I won’t go into a rant of the deficiencies of patient profile questionnaires, but that’s another hot button topic for me.
Oncology called today. My blood platelets are back to normal. I’m all clear to continue taking my chemo pills. This is the good news we were hoping for today.
Being eager to get back on track, I took my dose without giving a thought to the anti-nausea medicine. One of the doctors (a resident) had suggested that if I wanted I could try to take the chemo without the anti-nausea, because there is a chance that I might not need it. Well, I needed it. For an hour I tried all the tricks I could to fight it off. I finally just had to give in.
In a waiting room one day, another tumor patient explained chemo nausea like this: imagine the sickest you’ve ever been… multiplied by ten. It was pretty rough. But not as bad as throwing up from having drank too much booze in college. That is, I felt fine afterwards, and the room wasn’t spinning. So, lesson learned.
Tina loves squirrels. I like squirrels. But like most Atlantans that I know who feed birds, squirrels are regarded as a nuisance. I happened to take a look outside this afternoon and see the squirrel in the photo above. (Note, some mobile devices aren’t displaying the photos.) Looks like the poor guy has a big tumor on his shoulder. I don’t know what it meant, but it struck me as something I needed to take note of.
My poisons have arrived.
Some of the more common side effects are listed below. The list of “serious” side effects is too long to type and frankly too disgusting or horrible to share here.
- Back pain
- Dry skin
- Hair loss
- Joint pain
- Loss of appetite
- Stomach pain
- Mouth sores
- Muscle aches
- Taste changes
- Trouble sleeping
- Weight gain
Looks like I’m ready to get this party started.