Wednesday, September 12, 2018

Is diet's relation to cancer really a myth?

I'm struggling with thoughts that all of the years of careful eating really meant nothing so far as cancer is concerned. In fact, my oncologist said that a low carb diet helping to prevent cancer is just a myth that sells books. And when he said it, I agreed with him given that I had just been diagnosed with the dread disease. I have been in ketosis for eight years (VERY low carb) - and still I got cancer.

The outcome was pretty good though, since I am part of the 20% who survive the particular malignancy I had (a GIST, if you want to read up on it) without going onto a prophylactic dose of chemo for the rest of my life. So maybe my diet had something to do with that. I don't know. Life is a crapshoot.

I'm cleaning cupboards this morning - a long overdue job, but one that is indicative of just how good I am feeling now that I'm through the surgery and not on chemo. So what does that have to do with diets and cancer? Well, in addition to finding out I don't need to shop for three months, and coming up with great recipe ideas as I find things hidden away that I forgot I had, I found a cupboard where I had a cache of baking supplies.

And so I have A tale of two coconuts - I had two bags of unsweetened shredded coconut in my cupboard, one organic and one not. The non-organic bag was intact. There was a hole chewed in the side of the organic bag. Unbiased mice prefer organic over non-organic!

Think I'll keep eating my old way. I'm throwing out the non-organic, too. The mice know what's good for them and what's not, and so do I. Now back to cleaning cupboards!

Bon appetit!

Monday, September 10, 2018

I am feeling soooooooooooo good!

At last, my stomach doesn't hurt when Fred decides to crawl onto it. My energy level is almost up to pre-cancer treatment levels. Three weeks from Wednesday, I get to go back to Crossfit. Yesterday afternoon, I mowed the whole lawn (first time since foot and ankle surgery).

I am on a ketogenic diet for health reasons. It has gotten me off a nasty scrip, and has enabled me to lower my dosage for blood pressure meds. Lately I have been taking Celebrex every other day, sometimes I can quit altogether, depending on activity level AND how well I have been eating.

How well have I been eating? Not very. Did you know a Klondike bar has 28 grams of carbs? Cut in half, that's only 14, and I can have 22 a day. That's okay if I haven't had a tiny (or not so tiny) bite of bread, haven't eaten some of my favorite keto recipes that still have 10 grams per serving (so why not have TWO servings?). It had to stop.

Now that I am back in the groove with the keto diet, I am hoping to ditch the Celebrex altogether. Besides, a healthy dropperful of CBD oil works almost as well as Celebrex, especially if I have been in ketosis. I'm happy with 5, but this morning my reading was 15, and I can feel the difference. It's almost like taking speed.

It has been a long road since I had surgery for torn ligament in ankle and torn tendon in foot the day after Christmas. That one was worse than I imagined it would be. I had barely gotten back on my feet when I noticed severe stomach cramps and black, tarry stools. That eventually led to a diagnosis of a malignant sarcoma, known as a GIST (Gastro Intestinal Stromal Tumor), planted in my stomach near my esophagus, a particularly bad spot. I was back at Crossfit for only six weeks when I had to go on chemo, which sapped my strength to the point where I didn't go anymore.

In the midst of all of this, I lost my beloved Tashi, 14 years old, pretty ill for the last five years of her life, but we hung in there together. Still miss her so much.

Maybe when so much goes wrong in such a short time, one finally becomes immune to shock. However, I experienced shock when the oncologist told me that I would not need anymore chemo after my surgery. In the hospital after its removal, the surgeon told me three years of chemo! Seems like it was just more bad news to deal with, another challenge I really didn't want to face.

And then three weeks later, after all of the path reports were in, the oncologist gave me the lovely news - NOT an aggressive tumor, although definitely malignant. SLOOOOOOOOOOOOOW growing tumor, in spite of a spurt of growth when I was taken off Gleevec due to liver and heart problems. But it's gone!

So yes, I am shocked! GOOD shock!! I was considering how to deal with having to go back on chemo, which was like poison to my body. I seriously considered just saying no, and letting the chips fall where they may. Better a few years of feeling good than 20 years of the hell of dealing with Gleevec and all of its side effects. I was on a support board, and many of the people on the board have been on Gleevec for 18 years!! Bothering your liver? Then just get on steroids - with all of their side effects - in order to tolerate the chemo. I was the only one on the board with heart issues, so I had no one from whom to get info on that.

CT scan in six months, every six months for two years, then every TEN YEARS! I choose to look at the situation as a cure. If I get bad news in six months, I will deal with it then. In the meantime, living with the firm belief that I am cured has helped me to get back on the wagon and "just say no" to Klondike bars, a small (well, maybe this time a medium) order of well done French fries, and one too many tastes from my samples of the French baguettes I take to market on Saturdays. I am back on the keto train and feeling wonderful!

Sunday, September 2, 2018

Here's the scoop - WITH FOLLOWUP!

Jump to the bottom for the update to this post if you want to cut to the chase. I was waiting to post this until after my appointment in Boston on Thursday. I wrote this during the three weeks that I was waiting for results of path reports, and it was not a good time for me.

The good news was that they were able to remove the whole tumor by laparoscopy. I have five slices in my abdomen. The surgeon had to take about 10% of my stomach, and he felt good about the margins being clean. Pathology reports will be available next Wednesday - five days out.

I felt my tumor. It felt like the baby's first few kicks during your first pregnancy. I could sometimes feel it under my hand, a couple of times actually saw the movement under the skin on my abdomen. These things grow on a stalk, and ordinarily it would have been floating outside my stomach, but it was floating on the INSIDE of the stomach. That's why I felt the "baby kicking." The surgeon explained to my daughter how he had to make a hole and push it through so that he could get to it from the correct side. I am not sure, but I think Val said he pushed it from the stomach into the abdomen. Or maybe I have it backwards. Doesn't matter - it's gone!  I am waiting anxiously for the video. I'll get to see the whole thing.

So often, things are not as bad as one fears, but not as good as one hopes. This experience falls into that category. I was hoping that they would find the tumor was completely free of malignancy, even though everything I read (and what my oncologists told me) is that these are NEVER classified as benign. But four needle biopsies showed no sign of malignancy, and I had hoped . . .

So since the tumor is completely gone and the margins appeared to be clean, why should I care that the tumor was most definitely malignant? Here's the bad news. It is follow-up treatment that is the issue. Dr. M. from Harvard appears to have been right - this was a very aggressive tumor. Follow-up will be three YEARS of chemo, or anyway, that is the initial prognosis from my surgeon. More from Dr. M. the oncologist on August 30. My body cannot handle Gleevec, the drug of choice for these. Both my liver and my heart were rather severely affected by the chemo. It didn't really work that great anyway. The growth in the last four weeks (sans Gleevec) was pretty intense, recovering the whole loss during the 2-1/2 months of chemo, plus another 0.3 cm. So by the day of removal, it was actually 0.3 cm larger than when it was initially diagnosed.

I can thank my lucky stars that it must have bled while I was recovering from foot and ankle surgery, because in my boredom, I was well aware of some severe abdominal pain, and there were signs of blood in the stomach when I went to the bathroom. Without those signs, this could have grown quite a while longer. In fact, by the time I got to the gastroenterologist's office, the pain was gone, and I actually said, "Why bother? It must be a bleeding ulcer that is healing on its own." The doctor told me that her mother didn't want the test, but they convinced her and the test revealed that she had cancer. So she said, "Let's just do the test and then you will KNOW that you don't have cancer." Hah! When I woke up and they said no ulcer, I didn't have to hear more to know I was in trouble. Within three weeks, I was diagnosed with GIST, a sarcoma. Never benign.

I have felt so good since going off chemo, more energy, lost the chemo weight, no more Prinzmetal's angina attacks. The thought of going back on is depressing, and even more depressing is the thought that they will not be able to find anything that I can tolerate, hence leaving the door wide open for a recurrence. Sort of like having sex without protection. Only a 20% survival rate if it shows up again. I know, one day at a time, but I'm struggling right now with the uncertainty of my future.

I don't know if anything they find on the path reports will have any effect on the post-op treatment, but I'm leaving this in the draft folder until after my appointments back in Boston on August 30. Maybe there will be some good news then. In the meantime, I am trying not to think about it, staying busy, enjoying the boat and the pets, hoping the appetite comes back. I can eat just so much and the body says, "No more!" I'm there now. Four more bites of salad, but I just cannot do it. The door has closed yet again.


UPDATE: Oncologist in Boston told me on August 30 appointment that it was in fact low risk, not high risk. No Gleevec. Just CT scans every six months for two years, then every ten years. I am cancer free! NO FOLLOWUP CHEMO!!

Tuesday, August 7, 2018

Tomorrow's the day!

I spent the day cleaning out the system in my hotel room. Ugh! My daughter arrived this afternoon. She went out to find me some broth, Jell-O and ginger ale for supper. Not quite like last night's supper!!

Surgery is taking place tomorrow morning at 9:30 am. I met with the surgeon, Dr. Wang, this morning. He thinks he will be able to do laparoscopy. In spite of the size and placement, laparoscopy will be possible because he will be looking at it in two ways - he will do an endoscopic ultra sound so that he is viewing the tumor with an internal camera AND he will be going into the stomach using laparoscopic technique, going through my abdomen.

He told me that this technique is a bit tricky, but it would enable him to take the least part of my stomach because he will be viewing it from two different angles and he can be more precise. He said better to have to go back in later than to take too much since quality of life is important. Sort of like my oncologist, Dr. Rushing, telling me that I needed to be happy and make t-cells, so he cut back my meds. The doctors I chose both have that great attitude - quality of life is so important. I am lucky to have found both of them.

Dr. Wang said that residents often do part of the surgery, but he will be doing it all himself, and if I give permission, it will be filmed so that he can teach this technique to other doctors. I said of course, that I always wanted to be a movie star!!

My daughter will do a post on my Facebook page tomorrow once I am out of surgery, and I will be back with more blogging in a few days.

Onward and upward!

Monday, July 30, 2018

All the nuts and bolts of getting ready for surgery

I had my ticket out to Boston purchased - one way. And I've arranged for boarding my dog, Fred. That was about it. So I got in gear today.

The Resource Center at Dana Farber helps cancer patients get discounted rooms at the Hampton Inn. There is only one night with a discounted room available, but the woman who helped me said to book for the whole time any of the three of us are there, and if a discounted room becomes available, you don't even have to move. So when my son checks out on Monday, they will charge us the hospital medical rate, which is helpful, when no discounted rooms are available, but if any rooms became available during our stay, then we will be charged that low price, which is a fraction of the hospital medical rate. I am very thankful. It is pretty costly for all of us to fly out there. Would have been much easier in Indianapolis, but I know I made the right decision, and my kids are standing behind me.

Dr. Wang's nurse told me that she is ninety-five percent sure it will be five days, but it could be as few as three (I don't think they will be able to do laparoscopy, so that is probably unreasonable), or as many as seven. So how do I schedule a ticket back home? Pay the extra $20 for trip insurance, that's how. I also upgraded on trip home to a seat with more leg room and early boarding. At $56, that seems like a bargain, and I got one for my son, too.

Fred will be going to Sue's Small Stuff for a visit there. He shouldn't be home alone, even though the neighbors have offered to care for him. Dogs need company. A neighbor girl is coming over to go over daily tasks here, care and feeding of the parakeets Pumpkin and Sweetie Pie who will have each other for company, and my crazy cat Holly Berry who will enjoy having the whole house to herself so long as the food bowl is filled regularly. Tomato plants will have to be soaked daily. There has been too much work put into them to have them shrivel up and die while I am gone.

My son is coming up Wednesday for the last of the yard work that Valerie and I didn't get to last week. It's his birthday present to me - edging, trimming, another mowing with the repaired lawnmower (sharpened blades, bad wheel fixed), giving the bushes in front of the house a haircut, and MAYBE power washing the north wall of the house. It's getting pretty green! It's only the wall by the kitchen that is bad, not sure why only that area. I think I cook too much!!

I have been so worried about my pickle juice! Was planning to pour into seven 3-oz. plastic bottles since it is the only thing that relieves my nightly leg cramps. Well, guess what? Amazon has concentrated pickle juice shots in 2.5 ounce bottles, which meets airline requirements.

I'll be taking my CBD oil, and my frankincense, and my Deluxe Sleep Oil. I will have a veritable pharmacy of my special "Susie scrips." That ought to go over really well with the hospital staff! LOL

My last blood test to check liver function is Wednesday. Then nothing more until I get to Boston, where there will be one more round of blood tests, plus the clean-out routine. Ugh!

One week from Wednesday, with my alimentary canal spotless, it will be slice, snip, chop-chop, stitch, and all will be well! I will know just how much was (or wasn't) going on in that thing by the time I wake up. My daughter will be there, and insists in staying all night at the hospital the first night. My thought is, "What are the hospital staff for?" Hers is, "I've been through this with my husband (islet cell tumor in pancreas) and one of my daughters (ruptured appendix). I need to be there the first night - things go wrong!!"

Well, I have been at this all day. Time to hang it up! I'm done for now. The rest can wait.

Love my kids and all of my friends and family members who have been holding me in their thoughts and prayers. Thanks to all!!

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.