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!!
Monday, July 30, 2018
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.
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.
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 |
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.
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.
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.
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.
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| View back towards house |
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| Sarah driving with a little help from her mom |
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| Mike is in this one. |
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| See the babies paddling furiously behind mama? |
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| Val did a great job getting the cover on the back of boat. |
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| Things weren't lining up right - we missed one snap! Oops! |
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