I was inspired by a David Sedaris performance at Devos Hall to start a journal. Staci and I went as a mid afternoon date, and I thought I would just jot down a few notes on certain days. This could be called a journal. This could also be called disjointed thoughts that I could not make into a coherent post.
January 22, 2016
Day 1 at work, I’ve already had a few questions on “all natural supplements.” As long as you exercise, have a healthy diet (a ‘healthy’ diet is up for debate, but clearly not the typical American diet), don’t smoke, and take evidence based therapies, I am pretty flexible about supplements. No, I cannot recommend a dose of cranberry tablets, but I can recommend dried cranberries because they taste good. 1 out of 1 cardiologists typing this blog recommends it, but usually prefers the more expensive dried cherries (because they taste even better). How about a small handful a day? That sounds about the right dose. Same for cinnamon:
“Can I take cinnamon daily with my meds?”
“Um, cinnamon tastes pretty good, how about you put it on food, or a latte?”
Like many cancer patients, I have gotten advice from well meaning people, but sometimes it just doesn’t make sense.
“Make sure he gets pureed asparagus three times a day.”
I think asparagus is pretty good cooked wth a little olive oil (or grilled). Why would I want to puree it? Does it ‘release’ the cancer fighting chemicals? Or am I on a dysphagia diet now? I know it is doing something because it makes my urine smell funny.
January 30, 2016
Skin irritation from shaving my head in hard to visualize places. Staci popped a pimple on the back of my head. That’s gross; that’s love.
February 13, 2016
I had an ‘episode’ at the WMSL Conference swim meet, reminiscent of my original symptoms on the bike 10/29/16. Not sure what it meant, but not quite like previous partial seizures. I was at a swim meet Friday night, and again Saturday after a light work week. I just had some fatigue and felt like it would be difficult to talk, but I did not try. This was just my cancer saying “I’m still here.” Well, so am I (if I could talk back to it). Just needed to be a little more careful taking care of myself. That makes me think, is my cancer myself? I mean, can I personify it with a conversation, or am I just talking to myself? It has 99.9999999% the same genetic material as the rest of my cells. It grew from me. I’ll need to think about that before dramatizing another conversation with it.
April 1, 2016
“Does it taste good?”
That sounds like something that would be good to restore manhood ‘naturally.’ Unfortunately, it is supposedly for venous disease. They picked the wrong disease to market something called horse chestnut.
April 5, 2016
Spring Break in Mexico. 1 week of intense heat and humidity with no washing machine. The Alguires didn’t have clean and dirty clothes piles, we had a dirty pile and burn these clothes pile. You know when your previous dirty pile becomes wear once more pile? That was the last few days.
April 15, 2016
Read the Boys in the Boat by Daniel Brown. This is the story of the University of Washington crew team that (spoiler alert) won the Gold in the 1936 Berlin Olympics. It reminded me of my MSU days when a few crew athletes asked me if I wanted to join the team. I thought they simply recognized my athletic gifts: strength, endurance. No, they needed a coxswain.
April 17, 2016
Read an echo on a lady getting treated with Opdivo for her non-small cell lung cancer. This is an immunotherapy, similar to Keytruda (pembrolizumab). The echo showed a pericardial effusion, pulmonary hypertension, and her story revealed a middle aged woman that had progressive disease despite immunotherapy. I find myself cheering for others on immunotherapy, and discouraged when disease progresses. I wish this immunotherapy was the sliver bullet!
April 20, 2016
Let’s work on my sales pitch: I want to tell you about a product that has really helped me, and that is saw palmetto. Or, gingko biloba. I am coming too late to this supplement industry, so I need to find a new twist. Oak bark? Just googled it. Already taken. Just think of anything in the environment, add supplement to the end, call it natural, and it is being sold. With the recent news, I goggled Gorilla supplement. Dang, already taken.
Figure: Upper left, Gorilla supplements already taken. Upper right, what a coxswain looks like amongst the rowers. Below, my first haircut (in 8 months).
I can understand the interest in supplements. Meds are sometimes expensive, do not necessarily make you feel better, and have all sorts of warnings listed on them (average drug label lists 70 side effects on insert, but at least you know it was tested!).
May 6, 2016
Need a Mother’s Day present. I really need my kids to come through with art projects or cards from school.
May 8, 2016
Mother’s day. I really need to come up with a compensatory present for Staci’s birthday on May 27, 2016. I get two chances in May, and I like initially being counted out. A come from behind victory at her Bday after all hope was lost on Mother’s Day. The novelty of strawberry sour straws just isn’t cutting it anymore (same that they sell at Fortino’s in Grand Haven).
May 14, 2016
River Bank Race. I am all about goals, and being flexible about them. I had multiple goal times which shifted as the race progressed. Once the math was easy, I figured I needed to keep miles under 7 minutes to go under 1:40. Bam. New goal achieved.
May 15, 2016
Staci and I went to watch David Sedaris perform at Devos. This was a chance for West Michigan progressives and liberals to put away their differences for 2 hours and just enjoy his readings.
May 16, 2016
Yes, I heard about the Duke Polio trial. 60 Minutes played a segment on treating glioblastoma multiforme with a modified polio virus. This is not a vaccine, it is injecting polio into the the your head, into the GBM. They had a few patients featured on the show, some doing very well, but one died soon after treatment. This is exciting news for GBM, but also very early. When you know the first names of the patients that did well, cautious optimism is advised. The polio vaccine was given ‘breakthrough status’ by the FDA, but this can be confused with the layman’s usage of breakthrough. Breakthrough status has a specific definition by the FDA:
- Intended alone or in combination with one or more other drugs to treat a serious or life threatening disease or condition. Check. Craig’s Cinnamonax fits that criteria.
- Preliminary clinical evidence indicates the drug may demonstrate substantial improvement over existing therapies on one or more clinically significant endpoints, such as substantial treatment effects observed early in clinical development. Okay, there are a lot of qualifiers in that statement: preliminary, may, early.
If a drug gets deemed breakthrough status, the FDA will expedite development and review. The Duke team is invested in the maker of this polio virus. I have no problem with this, and 60 Minutes casually disclosed that fact. If this is a game changer, they should benefit financially. However, they may also be eager to promote the product as well. So, Go Duke! but I still don’t like Christian Laetner.
There was previously a vaccine for GBM that was deemed ‘breakthrough status.’ Every therapy for GBM will meet criteria number 1. Unfortunately, further study showed it had minimal value (also unfortunately, I have the tumor marker it was targeting with EGFR).
Figure: Left, Connor in the LBW race winning the first 100 meters. Unfortunately, race was 400 meters. At least he ran to win even if strategy was off. Middle 2: Miley also won the first part of the Doggie Dash before crashing, laying down and then just sitting in the water bowl at mile 2. She still holds the course record, though (18:20). Right, Connor at Cherry Cup with the River City Rascals.
May 18, 2016
I was interviewed for the Shelley Irwin show on WGVU’s the Morning Show. I told my story for a bit, and then she gave me the opportunity to ‘promote’ the imwithcraig organization. I think she had the impression that’s why I was willing to come on the show. So, after stumbling around a bit, our time was up.
Damn, that was my chance to introduce Craig’s Cinnamax, the all natural, gluten free, antioxidant rich, organic, cage free cinnamon product to help with whatever your potential ails. No, scratch that. Need to be more specific. It is a supplement for cancer patients to reach peak performance in races.
The next guest was Audrey Johns who really had something to promote with Lose Weight by Eating.
May 19, 2016
Ordered a selfie stick for Staci’s birthday. Probably not the compensatory present I was looking for.
May 20, 2016
Laura Franey, a cardiologist and partner, was asked how often it is okay to use cocaine. After some proposals and meetings, the official Spectrum Health Medical Group Cardiovascular Services answer is never.
May 26, 2016
A Camera. I’m brilliant and a great husband and father again.
May 27, 2016
Staci’s 39th birthday. See May 26 entry.
Figure: Summer has started. Left, Connor and a captured baby snapping turtle, his favorite activity at the Constant grandparents house (he knew to get in cousin Tanner’s kayak). Middle left, Sammy and Ella, getting ready for s’mores. Middle right, Lily and Allison, 1 and 2 in the LBW 1 mile race representin’ Breton Elementary. Right, John and Ella, nature explorers.
May 29, 2016
Finished A Series of Catastrophes and Miracles by Mary Elizabeth Williams and reviewed it on Goodreads. To get a sense for my tastes, I had to give 0-5 Stars on a series of books including the Catcher in the Rye, 1984, and The Great Gatsby, etc. Aren’t those books beyond a simple 1 – 5 star rating? Apparently, I like all of the great novels from the 20th century and Mary Elizabeth’s latest work equally. I also think Michael Phelps is a 5 star swimmer, but that is just my humble opinion.
I previously recommended When Breath Becomes Air by Paul Kallanithi. It is a beautiful book, written from a perspective of a tragically gifted surgeon with a terminal illness, and very aware of that fact. I could relate to the transition from doctor to patient and self examination. However, he is a bit full of himself. Mary Elizabeth is more real, going over the horror of cancer with humor. After Staci read it, she looked at me and said, “I think you are going to survive.” That’s good enough for me.