It’s been awhile since I posted, but that’s good news. Nothing much to report as nothing much has changed. Still have dry mouth, taste buds are still messed up, and I still don’t have much of an appetite. That works out well for Thanksgiving! This is the first time I didn’t stuff myself until I couldn’t move.
Doctors continue to be happy with my test results. CT scans come up clear, and visual inspections show no trace of the original tumor on my tongue.
I’ll be getting tested regularly (blood work, CT scans, etc.) for five years, then with decreasing frequency after that. When this whole thing started, I volunteered to be part of a five year study that UT Southwestern is doing to track the effectiveness of the specific treatment plan I received. Every time I go in for a checkup with the radiation oncologist, I get to fill out a multi-page questionnaire. It’s a small price to pay for helping the doctors refine a life-saving technique.
I’ll continue to update this blog, although sporadically unless something changes with my condition. Thanks for following along so far!
All of the results are in (MRI, bloodwork, etc.), and the conclusion is the cancer is gone, and that thing in my brain that showed up in my PET scan was indeed just an anomaly of the scan. Dr. Comedy called me up and told me there is nothing in my head. I replied that he wasn’t the first one to tell me that.
Statistically, patients that have a clean PET scan after treatment have less than a 2% chance of cancer recurrence. Next check is a CT scan in 3 months.
Moving forward with our travel plans for the rest of the year, one step at a time.
Good news and unexpected news. First, the good news. The cancer is gone. The oncologist is delighted with the results, as well as my progress towards recovery. Next test will be a routine CT scan of my head and neck, to be done in 3 months.
However, to take the shine off of that news, Dr. Sher announced that my PET scan showed something (possibly) in my brain, right at the top edge of the scan. There is a phenomenon known as an “edge effect artifact”, which is just a fluke of the scan that occurs right at the edge. This is probably nothing, but to be sure, he has ordered an MRI done of my brain on 7/17.
I am slowly making progress in my recovery. I still have dry mouth and radiation tongue (which could be an interesting superpower.)
Chronic fatigue lingers on, as well as tremors in my hands and arms. I think that I am getting some of my taste buds back – there must be six or seven of them working now. No real appetite. Eating is still a job to provide nutrition.
Still moving forward, one step at a time.
Sorry for the lack of updates.
My condition remains mostly unchanged. A lot of fatigue, so I sleep a lot. Taste buds and salivary glands are still dead. I have to take in at least 3000 calories a day or I lose weight, then I catch hell from my radiation oncologist.
I need to update my blog more often, but there just isn’t much change to talk about. Doctors still talk in terms of months or years for recovery, and then I may not have full use of what I lost.
On the other hand, when I talk to other cancer patients (and I know quite a few now), I have had it pretty easy in terms of treatment and after effects. While I bitch a lot, I know I’ve had a lightweight run at this cancer thing.
The next real milestone is July 10, when I have my next PET scan. I meet with the radiation oncologist on July 14 to discuss the results. This is when I find out if the treatment worked, or surgery will be required to get the rest of the cancer.
One month down, two more to go until I get a PET scan that hopefully gives me a clean bill of health.
This has been a good week, with lots of progress to report. On Tuesday, my chemotherapy oncologist reported that my blood count numbers are rising, and I am no longer in the anemic range. He felt that I no longer needed to see him weekly, and changed my visits to once a month. Next week I visit my radiation oncologist, and he should put me on a monthly schedule as well.
I continue on my quest to feed myself something besides soup and high-calorie shakes. I ate the guts out of a cheeseburger (bread is still a challenge to swallow) and finished most of the fries that came with the order. That’s more solid food than I’ve had in many weeks. Thursday we went to Kincaid’s, but I wasn’t able to finish a grilled chicken breast and fries. Not willing to step backwards, we went to Firehouse Subs on Friday, and I demolished a meatball sub, bread and all. And tonight, we visited Rosa’s Cafe, and I took down their chicken enchilada plate with rice and beans.
I wish that all of this food actually tasted good, but all I get out of most foods is salty flavor. Still, I’m taking in calories and solid food which decreases the number of liquid shakes I have to drink. I am maintaining my weight, but I don’t seem to be able to put any pounds back on, which tells me my body is still demanding fuel to repair the damage done by both the cancer and the treatments.
Stepping forward to +3 months, one step at a time.
Now that my treatments are finished, recovery milestones are measured in elapsed time since final treatment. The finish line is +3 months, when I get a PET scan to check for remaining cancer. If anything remains of the cancer, the next step will be surgery to remove it.
Both the chemo and radiation doctors are quite happy with the results of my treatment, and they say I am doing very well considering I’ve just finished radiation.
Currently, my focus remains on getting enough calories down my gullet. My taste buds haven’t come back to life, and there is no reliable estimate for when (or if) that will happen. Everything I eat tastes like cardboard, so convincing my body to swallow becomes a job. In fact, one of my doctors told me that eating was my job for the next few months.
Counting the days until +3 months.
I’ll be posting on an irregular basis instead of weekly for now.
After all of the horror stories I read and heard about Week Eight being the worst time of the treatment, I was pleasantly surprised to experience nothing worse than Week Seven. Not a buggy ride in the park, but at least the chemo/rad treatments are over.
Now my focus is on learning to eat solid food again. I am getting all of my nutrition from Boost drinks and calorie-laden powdered supplements. Tonight was a minor victory of sorts, as I managed to swallow some Rice Krispies after I let them get really soggy. Yeah, sounds appetizing, but it is my first step towards real food. Still can’t taste anything.
I’m struggling getting enough fluids on a daily basis, so I visit Texas Oncology in Denton every weekday to get two liters of something clear (saline?) intravenously. Takes about two hours, so I’m getting some reading done. Sometimes there is an active crowd, and we sit around and compare cancers and treatments.
Never thought that would be the high point of my day.
This is a major milestone on my cancer calendar. I’ve finished my regimen of chemo and radiation treatments. Starting this week, I am officially walking down recovery road.
All of my doctors say that I am doing great, well above the curve, heading into the recovery phase in good shape, etc. Good thing, as Week Eight is supposed to the hardest week. It’s like all of the side-effects joined together into a Legion of Doom and hit my body all at once.
One of my neighbors told Barbara that I should set a goal to work towards. I think I’m going to compile a list of restuarants and fast food eateries that I miss. The order I’ll visit them will depend on which of my taste buds come back to life first.
Meanwhile, one step at a time.
Only one more week to go in my treatment plan.
Met with my chemo oncologist Tuesday morning. He checks my blood tests to make sure that I’m fit enough for the day’s treatment. Turns out my ever-increasing fatigue is due to chemo and radiation killing off my both good and bad blood cells, making me incredibly anemic. The doctor is considering skipping the last chemo treatment in order to prevent my various cell counts from dropping any lower. He said he is 80% sure he’ll skip the last treatment, but I still need to show up just in case.
Radiation session Tuesday afternoon, followed by my weekly consult with the radiation oncologist. He is delighted with my progress, and says I probably won’t need surgery after all.
Wait. What? I thought the chemo/rad program was selected to avoid using the knife. It seems that after my final treatment, I wait three months for a PET scan, and if any cancer shows up, it may need to be removed surgically. Meanwhile, the radiation burns on my neck have upgraded from first degree to second degree. I expect they will hit third degree by the end of this week, as there are already forming blisters.
Still, only one week left.
I’m getting later each week with my postings. Fatigue from the chemo and radiation seems to be getting worse; sometimes my hands shake so bad I can’t type.
So, Week Five started Boost phase. Previously, my radiation plan involved four, 360 degree passes of the radiation emitter around my head. A higher dose of radiation was given to the tumor and the affected lymph node, and a lower dose was used for the rest of my mouth and neck. In Boost mode, only the tumor and lymph node are radiated, requiring only two passes. This makes my treatment session much shorter, for which I’m grateful.
Two more chemo sessions, and two more weeks of radiation to go. During my weekly consult with Dr. Sher (radiation guy,) I’m told the near future looks something like this
- Week Six and Week Seven – more of what I am experiencing now in terms of weakness and discomfort, only more intense
- Week Eight – post-treatment now, but it will be the most uncomfortable week of the whole trip
- Week Nine – should start to stabilize, and begin to recover
- Week Ten and Beyond – recovery of strength, taste buds should begin to function, salivary glands (that weren’t destroyed) should come back to life
About three months after Week Seven, I’ll get another PET scan, and we find out if this treatment worked.
I REALLY miss food.