Friday, July 20, 2018

Decisions, decisions!

I have been struggling with contradictory input from doctors. My preferred oncologist is at IU Health in Indianapolis. No doubt. 

His analysis differs from the doctor at Dana Farber in Boston (part of Harvard). Maybe it is the fact that my undergrad degree is in statistics, and he goes to the white board at some point during every appointment, laying out information in graphs and charts that make sense to me. Or maybe it is that he cares about my happiness. And he made a chart about the importance of happiness in increasing our life spans. 

When I told him I was going to quit baking because I was too exhausted, one would have thought I had told him I was going to jump off a bridge! He said that I needed to be happy to make t-cells, and those t-cells were just as important to my healing as Gleevec, the kinase inhibitor a.k.a. chemo-by-pill that I was taking every day. I was taking a very high dose. So he cut the dose back.

The next day, I bought a pontoon boat. I live on the river, getting a boat was on my list, and I thought, "What am I waiting for?" I named her T-Cell. If happiness makes t-cells, then I am definitely making them when I am on the river. 

On the river with T-Cell
The oncologist at Boston was terse, insisted that the tumor was aggressive in spite of tests that said otherwise. I called his office later and he was good enough to call back. I questioned his diagnosis about how bad my tumor was. He said it was "high risk." I told him that I had looked at a chart that says, by size, 1 to 4 cm tumors are low risk, 4 to 8 cm are medium risk, and more than 8 are high risk. Before the Gleevec, mine measured a little under 6 cm. I asked, "Doesn't this mean mine is medium risk?" Paraphrasing, his answer was basically, "No, because I said so. That was just one chart."  Chart was from a reliable source, by the way.

I don't think he liked the little old lady questioning him. Ego.

My oncologist at IU was willing to listen to how the Boston doc thought my dosage should be changed. He had me taking half a pill one day (200 mg.), a whole pill the next (400 mg.). The Boston doc said that the half pill days would allow the malignancy to get a toe hold. He said I should take 300 mg. per day. My oncologist changed my scrip. No ego cropping up there -- although he did make a chart on half life of my medicine, and showed why he didn't think the change in dosage was going to make all that much difference - in fact, probably none. But at least he didn't just reject it out of hand. And his explanation made a lot of sense to me. 

On to the surgeons. Wow! From the first surgeon at IU telling me it would require a complete gastrectomy (that is, total removal of the stomach) plus the removal of the bottom quarter of my esophagus to the Boston doctor telling me he would do a resection (i.e. take out a triangle of stomach wall), not touch the esophagus, and I would be lifting weights in four weeks. These two diagnoses were based on both doctors looking at exactly the same test results. The IU doc said that if the chemo shrunk it a good amount, perhaps he could take just half the stomach and a smaller part of the esophagus. But he never discussed resection.

When I questioned the IU doctor about why his diagnosis was so different from Boston and asked if he would call the doc in Boston for some conversation, he told me two things. An emphatic NO that he wasn't going to call the Boston doc to argue with him (would it have to be an argument?), and that the Boston doc was just marketing to me, was telling me the story I would like the best in order to get my business. Wow again!

My inclination was to go to Boston, but the IU surgeon saved my son-in-law's life (removed an islet cell tumor from his pancreas over five years ago, and he is still doing fine). Eight hours on the table. Tricky business. And he is at the same hospital as the oncologist whom I dearly love. However, his specialty is pancreatic issues, not GISTs.

What to do? I am not a prayer person, but my daughter is. I told her I thought I was going to have to pray. I just didn't really know what to do, and the Boston surgeon had yet to call me back to talk about next steps should I decide to go out there for the surgery.

I called on Athena, the Goddess of Wisdom and War. Who else should I call on? Here were these warring doctors, and I needed some help. Then I forgot about it.

Later I suddenly thought, "If Dr. Wang hasn't returned my call, why not Google some Dr. Jiping Wang reviews on the internet?" Duh. Thanks for reminding me I have a brain, Athena! That was the "wisdom" part of her input.

Wow yet again! Dr. Wang is highly regarded in this specific field, and he does a lot of these. In reading through his creds, one of them mentioned that he specializes in performing least invasive surgery. That would explain why he is so sure that he can do this without removing my stomach - or even half of it.

I have made my decision. Now to make sure that I am not setting up any road blocks by using an oncologist from IU Health and a surgeon at Dana Farber Cancer Clinic at Harvard. Here goes - ONWARD AND UPWARD!

Thanks, Athena. 

Thursday, July 12, 2018

Much confusion yesterday, but all in all good news

I had a CT scan at IU Health in Indy yesterday, first one since I have been on Gleevec. The tumor was very minimally smaller, which was a bit of a disappointment to me. However, the oncologist, Dr. Rushing, said that sarcomas are different than, say, a breast tumor. There, lack of shrinkage would be cause for alarm, but with sarcomas, if it stays the same, celebrate! Or so he says.

He was quite concerned that the oncologist in Boston at the Dana Farber Cancer Clinic told me it was aggressive. He immediately left the room to get my report, muttering, brought the report back underlining the things that he said proved it was slow growing, and certainly NOT aggressive.

All of my records were in the hands of the oncologist (I'll just call him Dr M) in Boston when I went there a few weeks ago for a second opinion. I called ahead to make sure he had them. I had never read the report, only got a two-minute phone call from the doctor here in town who did the biopsies. Following is what the written report said. See that word "benign"?  The reason that they are treating it like a malignancy is that they always are or will be given enough time. So they are treated as if they already are. Far too many people on the board I participate in got a "no malignancy" initial diagnosis and did nothing, then a year later it was in their liver! So I fully agree with the course of treatment at IU Health. Here is the pathology report, verbatim. Oh, and by the way, that phrase (2 per 50 high-power fields) means it is very, VERY slow growing!! Nothing aggressive about that.

"A bland spindled cell neoplasm is identified with rare mitotic figures (2 per 50 high-power fields). High grade features are not present. Immunohistochemical stains are performed and are positive for CD117 and vimentin. They are negative for S100, S0X10 and CKAE1/3. Controls are adequate. While a benign GIST is favored, this is based on a limited sampling of the lesion. Clinical correlation is recommended." In other words, it needs to be sliced and diced to see where the little suckers might be hiding.

So what in this report would have prompted Dr. M to say it was aggressive? The only thing that Dr. Rushing attributes it to was that he just looked at three pictures, all taken from different types of tests, and one of them not even at the same lab, and took the largest measurement of each. Based on dates of tests, each one happened to be bigger than the previous one. According to Dr. Rushing, it did not indicate a rapidly growing tumor. Dr. Rushing used a tissue box that he moved around on the table to show how looking at it straight on towards an end will give a very different measurement than looking at it from the side. He said depending on the direction from which the camera took its shot, these things can vary 2 or more centimeters. Mine went from 3 cm to 6 cm. In fact, the 6 cm was rounded up - it was actually only 5.7 cm, and he believes it was probably a side shot being compared to a head-on shot earlier that might have led Dr. M to use the term "aggressive.".

Dr. M said it was a mistake that I didn't get on Gleevec just as soon as I knew it was a GIST. I didn't want to spend the $3,500 co-pay if I was going to get into the Novartis program (which I did), even if I had to wait three weeks. After all, the pathologist I spoke with here said it was slow growing. What's another three weeks?

I have been sick with worry since my visit to Dr. M. But one bit of comfort was that he said that Gleevec worked the best on aggressive tumors, so it should be shrinking pretty fast.

Well, I had another CT scan from SEVERAL directions yesterday, and every picture showed it had shrunk. Not by much, but it had shrunk and Dr. Rushing said that he could say with 100% certainty that it had not grown. So the three weeks without Gleevec, if it had grown, was already offset by the Gleevec - and then some. Very good news indeed.

Some liver numbers are off. Tests for Hep B and Hep C were negative (phew!), so I am taking three weeks off from Gleevic on the assumption that it is the problem. I'll be getting blood tests weekly, then back on Gleevec at a lower dose on weeks four, five and six, then another round of CT scans and a visit with Dr. Rushing. We'll be discussing dates for surgery. This is all very exhausting!

One thing that is running through my mind is that if Gleevec loves to go to work on aggressive tumors and will shrink them faster (I see notes from people on my GIST support board who say their tumors are half the size in just a few weeks), then the fact that mine barely shrunk at all means it is NOT an aggressive tumor, but in fact a pretty timid one.

Yay for timid tumors!!! I'm going to be fine.

Thursday, July 5, 2018

A life well lived . . .

Natasha Marie, or Tashi for short, joined the family on the farm in the fall of 2007. The vet guessed her age at about two years old, maybe a bit older. She loved that farm. She never quite forgave me for leaving it.

Tashi crossed the rainbow bridge today, July 5, 2018 at noon. I am taking her ashes to the farm so that she will be back in her beloved home, her Summerland, for eternity.

Tuesday, July 3, 2018

T-Cell is in the river at my dock!

Ahoy, Mateys!

We spent Sunday on the river, came ashore for a cookout, then back out for one more ride. We got pretty good at popping the Bimini sun shade up and down. The river is so high that we couldn't get under the bridges with it up.

Then back to the dock and since we were supposed to get rain, we put the cover on for the first time. That is definitely not a one person job! But we got it done. It's all tucked in. The rain didn't happen, but it's good to have it covered at least part of the time.

Sheesh! I'm going to have to get a carpet sweeper to get the flooring clean. Well, it's worth it.

Here are a bunch of pics of our day.

View back towards house

Sarah driving with a little help from her mom

Mike is in this one.

See the babies paddling furiously behind mama?

Val did a great job getting the cover on the back of boat.

Things weren't lining up right - we missed one snap! Oops!

Monday, June 25, 2018

I know you are trying to help, but . . .

I get a lot of advice from people who have the answer, people who tell me that cancer is a modern disease borne of the way we live and eat now (it's not, cancer was found in dinosaur bones), that sugar feeds cancer (that's one I believed but given my ketogenic diet, I should not have been confronted with this if sugar really is the culprit), and much more. I know that people mean well, but before you send me your magic cure, please take the time to read this article. These are well documented. While my oncologist in Indy believes that T-cells boost our own immune system and can help to heal us, he is not advocating T-cell production (yoga, hobbies, meditation, family & friends, etc.) IN PLACE OF Gleevec, since he understands Gleevec's importance. He is not pooh-poohing every alternative - but does believe those things are adjuncts, not alternatives. Anyway, here is the article. Please read carefully for a good education on what cancer is and how we can (or cannot) heal. And BTW, I am still rubbing frankincense essential oil over my belly and eating a very low carb diet. And I bought a boat, being delivered today, and named her T-Cell! Please take the time to read this Don't Believe the Hype - 10 cancer myths debunked.

Saturday, June 23, 2018

Good news, not so good news, a little of each.

I went to Dana Farber Cancer Clinic in Boston on Thursday. It was a grueling day - up at 2 am, Vinny, my friend who is an Uber driver, was there to pick me up at 3:30 and take me to O'Hare, where the fare was less than a fourth of the fare out of South Bend. I got back at 3:30 am, 24 hours later. Long day!

I arrived at the clinic right on time and got through the check-in process pretty quickly. My appointment with the surgeon was what interested me the most, since the surgeon I had talked to in Indy said surgery would be drastic, that about the best I could hope for was to have half my stomach removed as well as the bottom of my esophagus, and that was only IF the chemo reduced the size. No size reduction, then the whole stomach and bottom quarter of esophagus would have to go.

I live to eat, not the other way around. I live alone, often spend an hour or more fixing my dinner in the evening because of the pure pleasure of going through recipes, preparing the food, and then enjoying the fruits of my labor. No stomach? I was distraught. Half a stomach? Not much of a consolation prize.

I started on Gleevec, which isn't actually chemo, but rather a kinase inhibitor. But it has the same purpose - to shrink the tumor.

The good news - Dr. Wang (pronounced Wong), the surgeon at Dana Farber, said no to removing the whole stomach, and said even if he did it now, he would just take a triangle out and wouldn't touch the esophagus (that part was really worrying me, Google junkie that I am). I asked about eating afterwards. He said I probably wouldn't even notice the difference. Probably not eligible for laparoscopy unless the shrinkage from the meds far exceeded expectations. So if there is an incision, how long until I can go back to Crossfit? "Four weeks," he said! I said, "You're hired!"

Meeting with the oncologist in the afternoon was not so uplifting. I was told in South Bend that it was a slow growing tumor. I was hoping to get into a study. It was $3,000 co-pay for 30 pills vs. free. I opted to wait for the free stuff so I started the pills three weeks later. The oncologist looked at my pictures and said it was extremely fast growing, had in fact doubled in size between April 2 and April 24. I said, "I should have paid the $3,000 to get on Gleevec right away." He said, "Yes, you should have, but since you were told it was slow growing, you made what at the time seemed to be the right decision." No more pics were done before I started Gleevec, so who knows how large it got before it was finally treated. I know I have gone from size 10 pants to size 14, and I'm wearing smock type blouses. Oh, well, what is done is done, and I can just cross my fingers that I didn't cross any lines by waiting.

On July 11, they will do another CT scan, but of course it will not take into account any growth that happened between April 24 and May 15. The important thing now is to assess it often to check for rate of shrinkage. As soon as the rate begins to slow, or anyway this is the word I am getting from Dr. Morgan, the oncologist at Dana Farber, it comes out! I will continue seeing my oncologist in Indy, but the surgeon will be Dr. Wang, and it will be done at Dana Farber in Boston. Not convenient, but it's my health and my life, and I want to walk away from all of this with a functioning stomach, malignancy free.

So that's what's happening in my life. And by the way, the oysters on the half shell that I had for lunch in Boston were fabulous! Best ever, with shaved frozen horseradish atop each luscious plump bivalve.

Like I said, I live to eat.

Monday, May 7, 2018

Health update

I am scheduled to start chemo to reduce the size of a GIST (gastro-intestinal stromal tumor) to prevent -- or minimize -- surgery that would require removing my whole stomach and part of my esophagus.

Now it is down to who pays. Cost of a month's meds is $11,000. There could be help on many fronts. First victory - Humana, after saying it wasn't covered, has given me approval for the name brand med, which is what the oncologist has ordered. However, the co-pay was $3,000 a month. After many calls, it is now down to $950 co-pay a month, still pretty hard to swallow.

Novartis, the maker of the med, may opt to provide it for $25 a month based on my income and the severity of the illness. My fingers are crossed. Definitely the best deal, but it could be up to three weeks wait, and there is a little discomfort that I'm hoping will go away if the tumor shrinks.

In the meantime, I am dealing with this by assuming that anything less than total removal of my stomach is a win. And even if the worst happens, it is not life threatening. So that's where I am.

I'm continuing on my low carb ketogenic diet. I've started drinking Essiac tea every night. My friend Bill reminded me that turmeric has cancer fighting properties. I can do that! Love curried anything, which is loaded with it. My daughter reminded me of the healing properties of frankincense. I rub it on the back of my neck in the morning, put a few drops on the personal diffuser I wear around my neck, and use it in my cute little diffuser that fits in the USB port on my computer and in my car.

Finally, the weather has broken and spring is here. I filled my seedling tray with organic seedling mix and filled 11 cells, mostly tomatoes, in each of 24 rows. There is one row of basil and four rows of flowers, mostly nasturtiums. See, even the flowers I grow have to be edible! And they have already started to germinate.

I spent time in the sun cleaning up my rose garden yesterday. I often say that making a dozen or so French baguettes twice a week are my moments of Zen, but I think flower beds are, too!

Cyn is coming over this afternoon to practice Tai Chi with me. You can find Brother Raymond teaching Tai Chi here. Cyn and I go to River Bend on Wednesday for first hand instructions.

Brother Raymond leading tai chi class
I am stopping to smell the roses, bake bread and do tai chi with friends. Who could ask for anything more?