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.)
Released from the Hospital
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.
I’m writing this update from the doctor’s office, while undergoing my second infusion of chemo.
About nine days into my first round of chemo, two weeks ago, I began having some lower abdominal pain. Pain and discomfort steadily increased over the next several days. I barely got any sleep the past three nights because of the pain and getting up frequently to use the toilet (or at least TRY to). I thought it may have been an expected side effect — constipation. But this morning at my doctor’s appointment, a urine sample revealed I have a urinary infection. That should be easily cleared up with antibiotics.
So all in all, so far, so good. Unfortunately I won’t get an MRI until six weeks from now, which is to say, we have to wait to know whether the chemo is effective or not.
Let the Infusions Begin
Tomorrow morning I will have my first treatment of Avastin and Irinotecan. The intravenous infusions should take between four and five hours for this first go-round.
Here’s my prediction: I’ll tolerate the treatment with very mild side effects, if any; the tumor will quit growing; my brain swelling will subside; and soon the tumor will begin to self-destruct and shrink; then I’ll be able to switch to a less toxic, alternative treatments. I have a lot to accomplish in this life time — got to get healthy quickly so I can get busy living.
A quick note on Novocure: I still have the equipment. Maybe I didn’t give it long enough to work. I continue to read about other people’s experiences with it. But I need immediate results which it was not providing, hence the switch to chemo. Time will tell. I was glad to be free of it’s restrictions though so I could enjoy a weekend of fun and WATER!
R&R at the Lake
Tina and I spent the weekend visiting with friends and family. A family friend allowed us to stay at their beautiful lake house. It was a real joy for me to get in the water since I haven’t been able to do that for over a year. A friend of my brother’s brought his speed boat over. I tried wake-boarding for the first time. I got up on my third attempt. Even though the ride only lasted about 20 seconds before I wiped out, it was a blast.
Thank you to everyone who helped make it a wonderful weekend for Tina and I!
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.
Today I had my first treatment. A couple hours after gulping down my first set of chemo pills, Tina took me to Emory for my first radiation treatment. It was both no big deal and horrible at the same time. No big deal because it’s too early for me to feel any ill effects of the chemo and the radiation is also painless and only takes ten minutes. Horrible because in my head I occasionally imagined that I was feeling effects. And the radiation mask had shrunk a bit so it was extra tight. It tightened on my throat so that I could feel my pulse. I couldn’t open my right eye. It was nearly impossible to talk and they kept asking me questions. While I wasn’t really very uncomfortable, I was trapped and it seemed like a metaphor for my whole situation. Frankly, it pissed me off. When the nurse asked if I was ok, I simply harrumphed from under my whole-head muzzle. When it was over and she asked,
That wasn’t so bad, was it?”
I replied, “that depends.” I know she was just trying to be upbeat and sweet. At least I refrained from getting belligerent.
The radiation process was very sci-fi. The table I was laying on (which they inappropriately refer to as a couch) rotated. A big X-ray and a couple lasers whirred and hummed around my head as they moved into position. Green and blue lights flashed across my eyelids. Although I couldn’t feel the lasers it was clear when they were radiating me because of the ominous buzzer that sounded, warning others: DANGER, DANGER!
We finished the treatment with a quick bit of lab work. After yesterday, taking a vial of blood was a cake walk. First day of treatment — done. Only 41 days to go. Everything is running smoothly… so I thought.
What we’ve got here is a failure to communicate1
The Emory oncology nurse called to tell me to stop taking the chemo pills immediately. The lab work revealed that for some reason my blood platelet count had drastically dropped. I explained that it was probably because of the apharesis done the day before at Rush. She said that they were not aware that Rush was going to do this and that the ballgame has just changed. Luckily my cell count is still in the safe range, but if I start to spit up blood or blood starts coming out of nose, eyes, (anywhere) — call them immediately.
Well, what do you know — the Emory doctors are finally ready to talk to the Rush doctors. Hopefully they will see eye-to-eye and begin working together. I titled this post “Regression” because this hiccup is somewhat of a step back, a delay that could have been avoided. We (that is, Tina) really had to fight hard to get me into this clinical trial. We have a good feeling about it. I understand that Emory may not be ecstatic that we are working with Rush. Really, this is a business, with all the characteristics — profit margins, competition, ego, profit margins, prestige, and profit margins. Despite my cynical tone, I really do have faith that all my doctors are excellent professionals and good-hearted people with my health as their top priority. I’m confident they will work it out.
Tomorrow I go back to the space station for radiation, just no chemo.
- Quote from Cool Hand Luke, 1967
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.
Here I am getting fitted with a radiology mask. It will hold my head securely in place and ensure that radiation beams are delivered precisely. I was also instructed on taking the oral chemo treatment, Temodar.
We are moving forward with the Standard of Care treatment (radiation and chemo). Emory currently has one Phase II clinical trial available to me — RTOG 0837. It uses a drug called Cediranib which has a pretty nasty list of possible side effects. We are not willing to travel that path right now.
Tina, in her tireless efforts, found another Phase II clinical trial being offered by Rush University in Chicago called ICT-107. This study has some encouraging write-ups and basically no side effects. Rather than testing an experimental drug, it is testing immunotherapy — creating a vaccine from my own white blood cells. I had blood work taken today to see if I qualify for the study.