There Is Still No Road Map

I've said before that I'm a planner and an organizer.  I like to know what's next.  I like to put things down on paper to make it official.  Cancer treatment, like a defiant toddler, refuses to follow any plan or schedule.

I met with my surgeon today.  I have completed 12 rounds of chemo and had a PET scan this week.  I was hoping to find out a plan for surgery today.  Mother and I had our calendars out ready to mark everything down and make a plan.  Evidently the plan of attack is so complex it will require a room full of oncologists and oncological surgeons to sort it out.

The good news is that the chemotherapy has been very effective at shrinking the masses. All have been considerably reduced in size.  Everything is still operable as it was in December only now it's smaller.  The complicating factor is the spots on my lungs. In December, after my first PET scan, we found out that there were spots on my lungs.  My oncologist was not concerned about them at the time because they were small and showed low activity.  He wasn't even sure they were cancer.  My recent PET scan showed that they have shrunk and still have low activity which confirmed that they are indeed cancerous. These small low activity spots complicate my treatment.

Essentially my surgeon doesn't want to focus on one organ with surgery while ignoring another organ and possibly allowing the cancer to grow again.  I cannot take my usual chemotherapy while preparing or recovering from surgery.  It's a complex puzzle that will require some thought to come up with a plan.  My surgeon, my oncologist, and their peers will be meeting to discuss my case and determine a plan of attack.  If they cannot come up with a consensus on what to do, I may be sent for a second opinion at Vanderbilt.  As a scientist, this feels comforting. I like the idea of lots of experts discussing and debating to decide the most effective course of action. Logical and methodical is the norm for us Vulcans.

The good news is that my cancer has responded very well to chemotherapy, and surgery is still an option.  My cancer is still treatable. How exactly they will execute treatment is still being worked out, but I feel that I'm in good hands.  The path ahead will become clear soon and I'll have my calendar ready to mark down all the dates.  Keeping the faith.

Looking Back After #12

I finished my 12th and (hopefully) final treatment of full chemotherapy this week. It's likely that I will have to do maintenance chemo after surgery. But compared to what I have done already that should be much easier. It will be one chemo drug instead of four, one hour treatment instead of three days, and possibly less frequent too.  Compared to the stories I've been told by other cancer patients and the people I see at chemo, I feel like I had it pretty easy. My side effects were mild to moderate and were more annoying than debilitating. The odd thing is that the side effects and intensity varied between each treatment. It was like spinning the wheel on Wheel of Fortune. I never knew what I would land on. Fatigue and cold sensitivity in my mouth have been consistent, but the rest have varied with each treatment:

Heartburn

No appetite

Tingling fingers

Numb fingers

Cold sensitivity in fingers

Tingling toes

Clumsiness

Dry mouth

Nosebleeds

Hair thinning

Fever

Chemo brain

Missing from this list is nausea and vomiting. That is a blessing and has a lot to do with my positive attitude. I hate throwing up. So much so that I can generally will myself not to. If I had to go to chemo every other week knowing I would be throwing up and downing Phenagren, I would have been a much crankier patient.

The first chemo was pretty rough. I was exhausted from the previous week's appointments, scans, port install, etc. Plus I was mentally overwhelmed by everything. I think I slept for three days. After that treatments got easier because I knew what to expect, and the symptoms were milder too. 

Knowing what to expect and being able to plan for it helped Sara too. She knew Nana would be here to help, that there would be a trip to Sonic and likely shopping, and that it would pass in a few days.  She didn't like to see me sick and weak but she realized after a few treatments that it wouldn't last long. She has had emotional moments and worried this was "going to last forever". Six months is an eternity to a 9-year old. But mostly she has been a trooper through it all. Her strength has helped me stay strong and I'm sure it goes the other way as well. 

I met with my oncologist last week and planned for a PET scan to evaluate the success of treatment thus far. Then I will meet with my surgeon again. We will discuss all the details I was too stunned to think about back in December. Honestly, the only thing I remember from my first meeting with the surgeon is the two-hour wait in the waiting room and hearing that the tumors were operable and my liver will regenerate after surgery. And I got to see my CT scan which was cool. This time I'll have a list of questions. I'm ready for the next phase of treatment and glad to be done with chemo if only for a little while.  

All in all, things look good, and my heart is full of gratitude.

I like big data and I cannot lie

You other nerds can't deny

That when a girl walks in with a big spreadsheet

And a pie chart in your face

You're stunned, wanna put your glasses on

I like data because there is something tangible and reassuring about watching results.  I've accumulated quite a bit of data during my treatment.  As I go through the treatment process, I'm tracking and counting and marking things on the calendar. Chemo #11 was last week and dutifully marked on the calendar. I only have one more treatment to go if you're following along at home.  Every session, I get blood taken to make sure I'm healthy enough to take a drug cocktail that makes me sick and better at the same time. They hand me my printout with my numbers to scrutinize.

The numbers I'm watching are my platelets because if they drop too low I cannot take my next chemo thus disrupting my carefully laid out schedule.  I'm also watching my CEA (carcinoembyonic antigen) or tumor marker. According to my doctor, this is an indication that the chemo is working to attack the tumors and that they are not growing. The real measurement of progress are CT or PET scans to measure the size. However, the blood test is far cheaper and quicker than the scans that only happen every 3-6 months. 

Because I like numbers and seeing results, I made a graph of my CEA progress. Doesn't everyone like a pretty graph? 


The last CEA test result was 2.0 which is in the range of a healthy person (less than 3.0). I'm normal!  Well, as far as my CEA goes.  The rest is debatable.

Chemo Brain

KNOXVILLE, TN - Chemo Brain, also known as mush brain or fluff brain, affects millions of cancer patients per year. It causes memory loss, forgetfulness, misunderstanding directions, slow mental functioning, and mixing up numbers. The phenomenon is thought to be caused directly by the combination of chemotherapy drugs and impacts only the patient. However, a recent study by Peevler and Norris published in The New England Journal of Medicine (2016), indicates that the ailment may be spread to others. Research indicates that proximity and exposure times are key factors that govern the severity of symptoms. For example a person who interacts with the Chemo Brain Patient (CBP) daily will quickly see their ability to remember details and short term memory dwindle whereas a person who interacts with the CBP weekly might only experience minor forgetfulness.  Researchers did not evaluate the impact of digital interactions through text messages or social media.

Researchers caution against avoiding the CBP in their life but instead suggest developing their own mental fitness regime. A mental fitness regime is also helpful for the CBP.  Boosting mental fitness includes using notes as reminders. A simple "Do you have your keys" on the door or "Are you wearing pants?" on the closet can avoid disaster. Developing conversational habits that encourage both sides to recall a memory (i.e., do you remember how old you were when you gave up eating paste) or explain a process (i.e., what is you preferred method of boiling water) can help both parties. Cultivating the ability to listen to the same story five times without letting on that you know how it ends is a helpful skill that CBPs appreciate. Although not quantified by this study, researchers believe that a sense of humor helps both the CBP and those close to the CBP mitigate the stress associated with chemo brain until proper mental functioning returns.

Disappointment or Opportunity?

Today, for the second time in two months, I was delayed in my chemotherapy schedule.  I'm scheduled to go every other week, but it all depends on my platelet count. The ideal is 100 or over but we squeak by when they are around 75.  Today they were 64. That is a no go.

I'm disappointed because I want to stay on schedule. I want to be able to plan this out to the end of this round which is only three treatments away. I want to get past it so I can focus on summer, preparing for surgery, and envisioning what is ahead after we get past the world of cancer treatment.  But disappointed or not, I have no control over this.

There is nothing to be done for the platelet count.  Your platelets regenerate every 2-3 weeks on their own.  They will not be rushed with steak, sunshine, rest, wearing red, or any of the other things I've tried.  The odd thing is that I don't feel run down or depleted.  In all honesty, the day I go to chemo is usually one of the days I feel the best.  Most chemo patients will tell you that about the time they start feeling better, it's time for the next cycle.  I generally have a week or so of feeling good between treatments. I had enough energy to survive this past weekend of performances of the play Sara was in.

The last time I was delayed was in March.  That delay meant that I wouldn't be coming off chemo the weekend of Sara's play which I took as a huge relief and a blessing.  Working and watching the play through three performances is hard enough without the added drag of recovering from chemo.  This time it means that I have an extra week to enjoy being with Sara.  The past few weeks have been full of play preparations and after school stuff.  We have no after school activities this week.  Because of the testing going on at school, Sara has no homework this week.  And now I'm feeling good and have a break from chemo.  This is a perfect storm of school year bliss for me. For both of us. So instead of feeling bad from chemo, I get to enjoy unscheduled time with Sara.  

Cancer is teaching me, or rather forcing me, to be more flexible and less scheduled.  I'm trying to view these delays in a positive light.  The delays are disappointing because I just want to get to the end.  I made a promise to Sara when this started that when I felt good, we would do fun things. That we wouldn't let cancer steal our joy. So I'm viewing this extra week as a free week for spontaneous fun and restful nights.  

Memory and Reason

It's funny what your brain will conjure up in the wee hours of the morning when you should be sound asleep. It's 5 am and I might as well call it 6:30 because I'm not going back to sleep.

There so much about college that has drifted off into the recesses of my brain but for whatever reason, this sticks out.  In college I worked in an office in downtown Athens. I was 21 or 22 and working part time. I worked for a small business - a sole proprietor with about 5 other full time employees.  That job taught me a lot about professionalism and work ethics. And resilience when life throws a monkey wrench into your well functioning life. The business owner was about 35 with one-year old twin boys. I got to know his wife who was diagnosed with colon cancer that year.

I remember vividly the conversation when he told his small office staff. He talked briefly about their plan for her care - help from family, chemotherapy, surgery, etc. Then he shifted gears to the practical - the business had to keep going. It provided their sole source of income, health insurance, and jobs for five people. He told us that he would do what he needed to do for her, but he also had to be present at work.  In a way, that was for her too. It wouldn't help if their income stream dried up while she was sick.

I remember seeing her during treatment. Much like me she didn't lose her hair but opted for a low maintenance short cut.  I remember baby sitting the boys when she was sick and her family wasn't available to help.

I think about all this in the early morning darkness, and I wonder about her. I moved from Athens nearly 20 years ago. But alas, there is Facebook. I looked her up. There she is smiling with her husband and two grown boys. It made me smile to see them all together smiling back at me from my iPad. She is a 20-year survivor. She has been able to see her kids grow up. It gives me hope that I'll be there in 10+ years with my smiling grown up kid.

Good is Good Enough

I got good news from my oncologist on Tuesday. It wasn't great or miraculous news, but it was good. It wasn't what I was expecting though. I was looking forward to a break from chemo and surgery to remove the masses. When this journey started my oncologist recommended six months of chemo and then surgery. My surgeon wanted three months of chemo then surgery. I liked his plan better so that's what I was hoping for. But that is not what we are doing. My mother told me that I may have had my expectations too high. It's possible that's true, but I don't want to lower the bar here. I want to keep expecting great and possibly even miraculous results.  Instead I think I need to reframe my assessment of my progress.

Here is the data. I have a copy of my CT report comparing the pre-chemo CT to the 3-month treatment CT.  I read it. Then re-read it. Then read it while my mom googled medical terms. I think I've got it. The report used the term "markedly reduced" to describe the mass on my liver. My oncologist seemed happy with this. I did the math and found that it has shrunk by about 25% with six treatments. That number sounds good to me. It's still too big for surgery at this point. So we do more chemo and hope for a similar or greater reduction. The lymph node that showed signs of cancer prior to chemo appears clear now. My bladder, uterus, and ovaries "appear unremarkable" which is CT speak for no visible signs of cancer.  All good news.  The cancer we knew of is shrinking and there isn't new cancer popping up. The chemo is working its cytotoxic magic in my body.

Chemo #7 started this week. I should finish up #12 right as Sara gets out of school for the summer. On the morning of chemo #7, I was a big whiny baby about having another three months of this. When Sara whined that she didn't want to get out of bed.  I crawled in bed with her and said "I don't wanna go to chemo.  They're mean to me and make me feel bad."  After a few minutes of mutual whining, we decided we could not live in bed so we got up. I'm quite sure after a 2-3 month break from chemo for surgery, I would be an even bigger baby going back. As my mom and Shawn pointed out we've got momentum behind us. Plus we have a system down for this chemo thing. Day 1 we drop Sara at school, head to McDonalds for a bacon egg and cheese biscuit (high calorie / high protein diet), arrive at the infusion center for my appointment, survey the room for the best seat, get hooked up, recline, podcast, nap, and leave with my pump and fashionable fanny pack. My mom will read, crochet, or go shopping if the waiting room chatter is too annoying. Day 2 is loafing or low effort tasks. Day 3 I finish up by getting unhooked from the pump and sleeping the rest of the day. On Day 4 and 5 I rest a lot and slowly return to normal so I can go back to work on Day 6. And so it will go for five more treatments. 

I'm hoping that I'll be ready for surgery after the 12 treatments are complete. I know I will not be completely done with chemo because I will likely have to do clean up / maintenance chemo to ensure everything is gone. I'm just hoping the biggest chunk is over by mid-May and that my body keeps tolerating it and responding well.