Week 4 - Down time? What's That?

Monday, May 6, 2019

When I left my place of employment in June of 2017 to seek a new venture, one of the reasons for my departure was I felt exhausted. In addition to all of my responsibilities at the non-profit, I had become responsible for my mother’s life and end-of-life affairs, we had just finished dealing with similar health issues to mine in my immediate family, my uncle was beginning his end-of-life demise and had asked for my help with his affairs, and my adult daughter’s rise towards independence as a responsible adult living with Down syndrome was reaching new heights.

My hope was that I would start a new chapter with a reasonable amount of down time to catch my breath. Didn’t happen. My point is that the busyness described above, pales in comparison to how cancer seems to be occupying my time these days.

Today I took advantage of some down time and contacted a friend whose husband had gone through what I’m facing. It was great to touch base and discover that her husband was indeed recovered from his bout and has been doing great for 3 years. While I spoke to her on the phone, her husband, who was driving, chimed in with his firsthand experience as well. Her encyclopedic memory of the process was priceless. I’m sure she would substitute the word ‘traumatic’ for ‘encyclopedic’ but I have a tremendous amount of respect and gratitude for her wealth of information and the pep talk she gave me.

She gave me tips on what supplies to get, which ones should be paid for by insurance, to always ask for help when it’s needed, and really more advice than I can remember. They are truly part of my inspiration moving forward. In fact, as I write this today, she posted a picture on Facebook of her husband sitting in a restaurant eating a plate of chicken wings. That shall be one of my goals down the road.

Hearing from her husband and the tips he offered was even more important. After all, he already lived this experience. The first thing he said was if I liked Burger King, I should go fill up on as much of it as possible while I can because having extra weight now will help down the road. Turns out I do like Burger King so I’ll do my best to follow that advice. (Note: Since that suggestion was made, two nurses have confirmed it is a good idea.) We've since been in touch over the past several days, checking in on my progress and providing more info as she remembers it. I CANNOT THANK THEM ENOUGH.

Tuesday, May 7, 2019

Another day of downtime, so I took advantage by having lunch with my brother. We drove to a BBQ joint in New Hampshire. We’re both big fans of BBQ beef brisket and since I’ve been given the green light to fill up as much as I can, this was a no-brainer.

Discussing my situation on the drive up, I had a minor epiphany, and this only applies to my outlook in the here and now and may not be true for others battling the same or different kinds of cancers.

The whole situation of fighting this cancer seems to come down to assignments. It is not unlike a sports team or a work team or any other type of team. Everyone has their role to play. I feel guardedly optimistic that the doctors on my team will kill this cancer. They have the tools, the knowledge, the experience and I feel they are being honest in their prognosis. As the patient, my primary role is not to fight the cancer, but to overcome the side effects of the treatment the doctors will use in their attempts to fight the cancer. The issues of weight loss, difficulty swallowing, dry mouth, nausea, loss of taste buds, are not going to be caused by cancer. They will be the side effects of the treatment. That is the challenge I’m facing. Maybe everyone already knows this but it has given me a different view to consider than I had until now.

There are other team roles, nurses and technicians to perform the care, monitor my health, provide data to the doctors and be there to provide me with resources as needed, family and friends to help lend logistical and spiritual support to the fight, a very important role too.

By now, if you’ve read this far, you see how my minds works. I must find a way to wrap my head around all of the angles of a situation to ignite confidence. I feel like this new perspective was a giant step towards that goal. I have no idea how rough this experience will ultimately be but the possibility of being CONFIDENT with the process is now in the race.

The brisket wasn’t very good. As I told my brother, in my unprofessional opinion, the brisket was trimmed of all of its fat before being smoked which resulted in dry brisket. As my brother noted succinctly, “There’s nothing bad for you on this plate.” If you’re a roadside BBQ joint, that’s not a good review. C’mon people, leave the fat on, it’s the best part!

Thursday, May 9, 2019

Biopsy day. Scheduled for 10:30, we arrived by 9am as instructed. I was promptly bought into pre-op and hooked up to an IV, though the nurse struggled with the needle, I’m hoping that’s not a sign of trouble when chemo starts. My wife was allowed to join me after about 30 minutes and we waited. Another pre-op patient across the room began Facetiming a friend, whatever.

Around 10 an anesthesiologist came by to discuss his process and role in the procedure. I shared the last time I had a  surgical procedure was about 7 years ago. That time I was brought into the operating room and told to count backwards from 100 as the medicine was applied. I don’t remember getting to 98…it was the best sleep I’d ever had. He said this would probably be similar.

Just before 10:30 the ENT, who was going to perform the surgery, came to see us. He explained he was going to be looking for a spot on the base of my tongue to confirm the cancer. If he didn’t find anything there he was going to have to remove my tonsils. If that happened, my treatment would have to be delayed for a few weeks while I recovered from the tonsillectomy.

(As described in a previous entry, what I remember being told and processing is my experience. The following may not be medically accurate.) He further explained if no cancer was found in my tonsils, this could be a case of the cancer being defeated by my immune system and maybe the only spot they could identify was my lymph node. Sounded like possibly great news! The odds probably weren’t good but who knows. That balloon quickly burst with his next words.

“If we can’t find anything, your radiation will need to change from just being focused on your throat to an area from your cheekbone to your collarbone. And it will be an incredibly heavy dose.”

Ouch. That’s a real smack in the face. I didn’t let it affect me too much because as I said to him, pictures don’t lie, meaning the CT and PET scan clearly showed something on the base of my tongue so I was confident he would find something there. He agreed but just had to explain all of the possibilities.

We then discussed a few other “lighter” topics. He asked if I had had the mask made yet. I immediately noticed a giant smirk on his face. He noticed how wide-eyed I got as I retold my experience. He referred to the whole mask aspect of treatment as “horrible.” He acknowledged the important role the mask plays in keeping the patient in exactly the same place for every dose of radiation. He mentioned the radiation machines cost upwards of $10 million and were run by a “big” computer. Having been in IT for years I was a little surprised at such an archaic term for a computer but figured, he’s just a doctor, what does he know? He further went on to say that I had the best radiation oncologist in the business and that today, they were more of a computer programmer than doctor. I guess that’s fine, maybe that’s why I feel a connection to him.

I told the ENT for the last several days I’ve been trying to figure out a strategy on how to tolerate the mask during treatment. I shared that I’ve decided to flip things and think of the mask as a protector and embrace it as part of my daily routine towards being cured instead of trying to defeat it while I'm receiving radiation.

He said, “That’s an amazingly positive perspective,” but I sensed from his demeanor he was thinking, naiveté is a wonderful thing, or maybe it was just plain old denial. 

And then we waited to go into the operating room, and waited and waited. A couple of minutes turned into about an hour delay. The previous procedure in the operating room had lasted several hours longer than planned. Finally, I was given some light anesthesia and wheeled into the OR. I remember being moved from the pre-op bed to the operating table, hearing the ENT say, “He’s drunk,” and I was out.

I must have been dreaming just prior to coming to. I was thinking, “This is weird. I’m dreaming about being in a hospital and the last thing I remember was being in a hospital. It looks like I’m in a recovery area too, wow, very bizarre, dreams are so weird. Who is this nurse next to me? Is she talking to me? Oh, this IS real. I’m waking up.”

Next, still in a blur I noticed the ENT walk by my bed and say, “You still have your tonsils. I found the tumor at the base of your tongue, we’re all set to move ahead with treatment.”

The surgery took about 40 minutes, recovery probably an hour. My wife rejoined me in recovery and we were given post-op care instructions and sent on our way by 2 o’clock.

We were told I should expect a sore throat and mouth sores so a cool liquid diet was required for the next 2 days. On the way home we stopped at the pharmacy for prescriptions and visited the adjoining supermarket for anything fitting the cool liquid mandate.

I won’t bore with those details but I will say, after eating more than I should have for the last few days trying to bulk up, I was now ravenous. I hadn’t eaten anything for about 18 hours and now it was going to be protein shakes and yogurt? For two days? Oh well, suck it up Buttercup. I obeyed the diet orders and luckily wasn’t too sore. I ingested as much as I could stand during the evening, realizing this is a rehearsal of what is to come.

Friday, May 10, 2019

Consult with Medical Oncologist. Due to the lack of available appointments we drove into Boston for this one. This is concerning to me from a macro view that there are either so many cancer patients or not enough doctors that appointments for new patients are becoming scarce. Hopefully just an overreaction not founded in reality.

We arrived at about 11am for an 11:30 appointment. Our parking space was 311. The significance of 311 was not lost on me. Eleven years ago, almost to the day, my sister passed after a difficult battle with breast cancer. She was diagnosed at 44 years of age and passed at 48. Her birthday was 3/11. Yes, I felt some support from her as we pulled into space number 311.

We checked in at 11:15 and were called almost immediately. Could it be we’re actually going to be seen and get back out of the city early? We met with the nurse practitioner first who went over my health history and the story that has now been repeated ad nauseam. We discussed a wide variety of topics but the real conversation about chemo would happen with the doctor.

Then we waited, for about an hour. Finally the doctor came in, scoped a camera through my nose, looked at the biopsy area and began our initiation to chemo. She initially repeated much of what the radiation oncologist had explained, adding information about a clinical trial of proton radiation that may or may not provide better long term results (e.g., dry mouth, swallowing issues, etc.). The clinical trial would mean daily treatment in Boston which was not going to happen. By the time we finished discussing it she actually said there’s a good chance the trial will result in negative results for this newer type of radiation. She also shared that my radiation oncologist was the best in the business, so no reason to abandon that situation.

She said the preferred treatment for chemo would be a low dose of cisplatin weekly. The lower dose should result in less intense side effects than the typical higher doses given only a few times during typical radiation treatment. The lower dose over 7 weeks was preferred due to what they perceive to be a low platelet count in my blood. Not enough to be a major concern at this point but something to keep an eye on. Apparently the chemo can disrupt the body’s ability to manufacture platelets and that being the case I would need to see a hematologist soon, possibly today. So much for getting out of here early.

Seeing doctors in Boston also seemed to cause some confusion. I was asked a couple of times during the day why I was going to receive radiation in one place but chemo in another? I told them it was just a matter of scheduling a consult for today and when I was asked if I would be “willing to go into Boston?” I responded, “I would go to Mars if I had to.” All treatments will be done at the same location reasonably close to home.

When the doctor finished up the nurse practitioner returned, I assume since the chemo was a go she could now speak more freely and directly about the process. While she shared similar information to what the radiation nurse had gone over with me, there was one significant difference. When asked about the process for inputting a feeding tube, she seemed very surprised. She explained that here in Boston, they don’t install feeding tubes prophylactically. I had been led to believe at the site I was being treated that the feeding tube was necessary, no question about it. It’s ultimately a safety net but better to have it in case it’s needed.  She then stated, “They might have a different philosophy up there, but we typically don’t put it in until we have to.” Why would a healthcare institution have different philosophies at different sites? Is it a practical matter as far as the number of patients being managed? This doesn’t seem right to me so I have a call into my radiation oncologist to discuss the matter. (5/13/19 - I just spoke to the radiation oncologist and he feels there’s a 10-15% I wouldn’t need to use it so I’ll be having it put in this week or next.)

I also shared with the nurse practitioner about my new outlook on the mask. She listened closely, considering my perspective. When I finished she said, "Well that sounds good but they do bolt your head down to the table." Wow, work with me here, I'm beggin' ya!

Once finished with chemo we were lucky enough to be seen by the hematologist. He explained what the platelet issue was but as far as he was concerned it didn’t seem like it was something to worry about. I suppose that relief was worth the extra 2 hours we tacked on to the day.

We returned to 311 and headed home around 3:45. Got to sit in Friday afternoon rush hour traffic just like old times, remembering how I didn’t miss this at all.