Just a brief update: Thursday morning, the day after our consultation with the radiologist, the cancer center called and asked whether I'd like to begin radiation immediately. So Thursday afternoon I had the first session; Friday I had the second. I get the weekend off; then I'll have five more next week and three more on the M-W of the following week. The treatments go quickly. I settle in, machines whirr and mechanical arms move, and then two times I hear the distinctive buzz of the radiation. I did notice that this time the actual radiation lasts longer than it did the previous times on my upper spine. I made a rather dismissive comment on their failure to ask me whether I wanted the x's that mark the spots to be radiated tattooed on my body, and, to my surprise, they said that almost 50% of the patients go with tattoos, especially people who will have many treatments. One of the technicians particularly singled out those with prostate cancer who may undergo nearly 40 sessions. I refrained from asking where the tattoos actually went in those cases.
Meanwhile, good news from the vet: the tumor on Kimber's neck was a benign fatty one. She'll have her stitches (on her abdomen) and staples (on her neck) removed on Friday, and then she should be back to normal.
Saturday, April 23, 2016
Thursday, April 21, 2016
4-20
Yesterday was our consultation with Dr. Greene, our radiologist at Stormont-Vail cancer center here in Topeka. There was some confusion about the time--one time given over the phone, another on MyChart--but we got right in. Dr. Greene showed us the scan, which showed a larger than I had expected tumor on vertebra L[umbar]-5. There were also small spots on two adjacent vertebrae. We agreed that I should start round four of ten radiation treatments. (Two had taken place in 2011 on my femur and on my scapula; another was a few months ago on a spot higher on the spine.) The decision didn't seem to be a very difficult one since in the past I have tolerated radiation rather well, I've been suffering from strong lower-back pains, and the past treatments have been effective. I'll start on either Friday or Monday. The most likely side effect, since this part of the spinal column is just behind the intestines, is digestive problems.
The consult was followed by a simulation where they scan the area and put long-lasting marks on my torso to indicate exactly where the radiation will go. They've stopped asking whether I want these x's to be tattooed.
On the day before (Tuesday), Kimber had gone under the knife. She has had a large fatty tumor under her abdomen, one we had been "waiting and watching" to see what developed. But recently it seemed to have gotten considerably larger. When we took her in for an exam, the vet noticed another growth on her right muzzle/neck. She's always had extra fur there, belying my attempts to make her almost entirely a German shepherd. Because we see her every day, we hadn't really noticed that this growth too was enlarged. The vet spotted it immediately and was more worried about that, fearing it might be lymphocytic cancer. So Tuesday both growths were removed. The one under her belly was even bigger than it appeared, weighing in at two pounds, but certainly just fatty. The one on her neck was more complicated to remove, entangled as it was with nerves and muscles. The vet is almost sure that it too is just a fatty tumor, but it's been sent off to the veterinary school at K-State to be biopsied.
Kimber was completely out of it Tuesday evening. Getting her into the car was the first major ordeal. Once home, she had no idea where she was or who we were, but instead of collapsing into sleep, she spent the next four hours pacing. She'd walk into a corner and then be unable to figure out how to get out. Although we were worried about her and tried to get her to lie down, she was also driving us nuts with four hours of her nails clicking against hardwood. She finally collapsed. She's better now, and rather pleased that in order to get her to swallow her pills, we've begun feeding her canned dog food.
Poor Mohamed now has two sickies to take care of. But he's hanging tough.
The consult was followed by a simulation where they scan the area and put long-lasting marks on my torso to indicate exactly where the radiation will go. They've stopped asking whether I want these x's to be tattooed.
On the day before (Tuesday), Kimber had gone under the knife. She has had a large fatty tumor under her abdomen, one we had been "waiting and watching" to see what developed. But recently it seemed to have gotten considerably larger. When we took her in for an exam, the vet noticed another growth on her right muzzle/neck. She's always had extra fur there, belying my attempts to make her almost entirely a German shepherd. Because we see her every day, we hadn't really noticed that this growth too was enlarged. The vet spotted it immediately and was more worried about that, fearing it might be lymphocytic cancer. So Tuesday both growths were removed. The one under her belly was even bigger than it appeared, weighing in at two pounds, but certainly just fatty. The one on her neck was more complicated to remove, entangled as it was with nerves and muscles. The vet is almost sure that it too is just a fatty tumor, but it's been sent off to the veterinary school at K-State to be biopsied.
Kimber was completely out of it Tuesday evening. Getting her into the car was the first major ordeal. Once home, she had no idea where she was or who we were, but instead of collapsing into sleep, she spent the next four hours pacing. She'd walk into a corner and then be unable to figure out how to get out. Although we were worried about her and tried to get her to lie down, she was also driving us nuts with four hours of her nails clicking against hardwood. She finally collapsed. She's better now, and rather pleased that in order to get her to swallow her pills, we've begun feeding her canned dog food.
Poor Mohamed now has two sickies to take care of. But he's hanging tough.
Saturday, April 9, 2016
Update
Dr. Green, the radiologist, who, we were told, would be out of town for the next two weeks, will be gone for only one. We have scheduled an appointment with him for April 20 to discuss whether to proceed with radiation on the lower spinal tumor. It's a relief both that Dr. Green's office took the initiative to get back to us so quickly and that we won't have to wait for so long to discuss our options.
Thursday, April 7, 2016
4/7/16
It was back to the cancer center here in Topeka today to get the results of the CT scan I had two weeks ago. While I was checking in here, the lab called me for the blood draw. Although the phlebotomist juggled and almost dropped the filled vials, all that went smoothly.
Next, after a wait, it was time for the consultation with Dr. Hashmi. The analyst from KU Med, where the results had been sent but had not yet been posted, called immediately. I could overhear just a few words, "has progressed" being the most common--not the words I wanted to hear, though I didn't have any context. Dr. Hashmi relayed the results: the primary tumor in the left kidney has not grown at all; there is a tumor near the kidney, however, that has grown, though not dramatically; but there is also a tumor on the spine (not the same one as before, but L[umbar]-4, which has increased from 40mm to 48mm. This is on the lower spine, and I have been having lower back pains lately. On the plus side, the tumor seems to be growing away from, not toward, the actual spinal cord. The question is whether to wait and watch or to start another round of radiation treatment. Dr. Green, my radiologist, will be out of town for the next two weeks, so we'll wait for that long to see whether further symptoms develop and then consult with Dr. Green about the possibility of another sequence of radiation. Since I've supported radiation three times before--initially on my hip/femur and on my scapula and more recently on my spine--without bad side effects, I'm inclined personally to go ahead with them. But I realize that radiation isn't without consequences, so if they're unnecessary, there's no reason to begin them. We like and trust Dr. Green, so we will consider his opinion.
The day ended with the Xgeva shot, which is the extremely expensive bone-strengthening injection. That went more quickly than at KU Med.
And then it was home and directly to bed for a long nap.
Next, after a wait, it was time for the consultation with Dr. Hashmi. The analyst from KU Med, where the results had been sent but had not yet been posted, called immediately. I could overhear just a few words, "has progressed" being the most common--not the words I wanted to hear, though I didn't have any context. Dr. Hashmi relayed the results: the primary tumor in the left kidney has not grown at all; there is a tumor near the kidney, however, that has grown, though not dramatically; but there is also a tumor on the spine (not the same one as before, but L[umbar]-4, which has increased from 40mm to 48mm. This is on the lower spine, and I have been having lower back pains lately. On the plus side, the tumor seems to be growing away from, not toward, the actual spinal cord. The question is whether to wait and watch or to start another round of radiation treatment. Dr. Green, my radiologist, will be out of town for the next two weeks, so we'll wait for that long to see whether further symptoms develop and then consult with Dr. Green about the possibility of another sequence of radiation. Since I've supported radiation three times before--initially on my hip/femur and on my scapula and more recently on my spine--without bad side effects, I'm inclined personally to go ahead with them. But I realize that radiation isn't without consequences, so if they're unnecessary, there's no reason to begin them. We like and trust Dr. Green, so we will consider his opinion.
The day ended with the Xgeva shot, which is the extremely expensive bone-strengthening injection. That went more quickly than at KU Med.
And then it was home and directly to bed for a long nap.
Tuesday, March 22, 2016
3/22/16
Yesterday, Mohamed and I went to Stormont-Vail hospital here in Topeka for CT scans. As at KU Med, the S-V cancer center is separate from the main hospital complex. Unlike at KU Med, where all the tests take place in one building, here the scans are at the main hospital.
After check-in, we were led to the waiting room for the scans, and I was given two large glasses of water to drink. Here, the water was flavored with Crystal Lite, which was tastier than just the plain water at KU. Mohamed nudged me to look at the couple seated across from us. The woman was wearing a large Trump button. A couple of weeks ago, were at the car wash, and a man was strutting around with a gun in a holster. (Kansas now has both open and concealed carry.) And later, I heard a woman say that she never left home without a gun in her purse. I wondered whether this woman was packing and was unhappy to see my Arab-looking Arab husband. Instead, she was quite friendly and struck up a conversation with us. It didn't take her long to call attention to her Trump button. She likes him, she said, because he's "ornery" just like her. She didn't really seem too impressed with his toughness, though, asking us whether we'd noticed how scared and shaken he was when the man tried to rush the stage in Florida. Luckily, her husband, "a medical miracle," returned from his scans before we could delve more deeply into Trump's character.
My turn came, and I had to explain my medical history to both the nurse who inserted the port that would introduce the contrast for the scan and to the one who administered the scan. The latter was quite incredulous that I was still alive. I must have good support, she said (true), and a good attitude. She asked how I liked Dr. Hashmi, and when I said quite well, she said that a lot of patients didn't like him because he was too direct and didn't sugar-coat things. The CT machine was newer and sleeker than the one at KU Med, though it didn't have the cute icons of an orange head with bloated cheeks for when I was to hold my breath and a green one when I could breathe again.
Unless the results are posted online on MyChart, we won't know them until April 7, when we have our next consultation with Dr. Hashmi. At KU, everything took place on one day--tests and results.
Since I hadn't been able to eat before the scans, we went out for lunch, and then, as always, even though there was nothing difficult about the test, I came home and crashed for over two hours.
After check-in, we were led to the waiting room for the scans, and I was given two large glasses of water to drink. Here, the water was flavored with Crystal Lite, which was tastier than just the plain water at KU. Mohamed nudged me to look at the couple seated across from us. The woman was wearing a large Trump button. A couple of weeks ago, were at the car wash, and a man was strutting around with a gun in a holster. (Kansas now has both open and concealed carry.) And later, I heard a woman say that she never left home without a gun in her purse. I wondered whether this woman was packing and was unhappy to see my Arab-looking Arab husband. Instead, she was quite friendly and struck up a conversation with us. It didn't take her long to call attention to her Trump button. She likes him, she said, because he's "ornery" just like her. She didn't really seem too impressed with his toughness, though, asking us whether we'd noticed how scared and shaken he was when the man tried to rush the stage in Florida. Luckily, her husband, "a medical miracle," returned from his scans before we could delve more deeply into Trump's character.
My turn came, and I had to explain my medical history to both the nurse who inserted the port that would introduce the contrast for the scan and to the one who administered the scan. The latter was quite incredulous that I was still alive. I must have good support, she said (true), and a good attitude. She asked how I liked Dr. Hashmi, and when I said quite well, she said that a lot of patients didn't like him because he was too direct and didn't sugar-coat things. The CT machine was newer and sleeker than the one at KU Med, though it didn't have the cute icons of an orange head with bloated cheeks for when I was to hold my breath and a green one when I could breathe again.
Unless the results are posted online on MyChart, we won't know them until April 7, when we have our next consultation with Dr. Hashmi. At KU, everything took place on one day--tests and results.
Since I hadn't been able to eat before the scans, we went out for lunch, and then, as always, even though there was nothing difficult about the test, I came home and crashed for over two hours.
Saturday, February 27, 2016
2/27/16
Thursday was our first day of having tests and the consultation at the Cancer Center here in Topeka. It's about a 20-minute drive from our house, so shifting to Topeka cuts an hour each way from our itinerary. After all the years of going to Kansas City where we knew exactly where each test was given and how the routine unfolded--several rooms on three different floors--we had to learn the new pattern. The check-in for all procedures takes place in one room, a lovely, large atrium. I was called immediately for the blood work, and then after a brief wait, we saw Dr. Hashmi. All the results were in the normal range, even the red blood cell level and the Vitamin D, both of which have sometimes been below where they should be. So we'll stay on the same regimen with the next visit scheduled for six weeks from now. The CT scans, however, will take place a few days earlier at Stormont-Vail hospital with which the cancer center is affiliated.
The import of the visit was almost overshadowed when, the night before at about 10, we noticed that the house was feeling quite chilly. A little investigation revealed that the furnace had gone out. We got out a 40-year old electric blanket (twenty years younger than the electric heating pad that I sometimes, rather fearfully, drag out). Three quarters of the blanket still worked. The next day, after our return from the cancer center, the heating guy came. He said that it wasn't the furnace, but rather the breaker panel, which was so old that parts weren't available and would need to be replaced. The good news was that we were having warmer than normal temperatures, though still below freezing at night; the bad news was that they wouldn't be able to install the new panel until Monday. Off we went to Lowe's to buy a space heater, which didn't really seem to do much good. Friday, however, the electrician from the heating company called to say that he thought he could solve the problem. He arrived a little later, said that the breaker box, despite being the original one from when the house was built in 1968, was still good. He went off to get a new breaker to replace the one that controlled the furnace, returned in 30 minutes, and voilà the furnace roared back to life. So as I write this Saturday morning, we are back to normal, not bundled up huddled close to a space heater.
On other fronts, as I may have said, Mohamed has had his green card for two years. The first two years, though granting the privileges of work and travel, are "conditional," and after that time, one must apply for "removal of conditions." The point is to guarantee that green cards issued through marriage to a citizen have not been based on marriages of convenience. I had misread the instructions and thought that the new application should be submitted at least 90 days before the expiration of the old card. It didn't seem logical that the deadline was any time within the 90 days before the expiration since that wouldn't give the government sufficient time to evaluate the material before the green card expired. What happens, however, is that the materials are due in the 90 days before expiration, following which the CIS issues an automatic one-year extension. The next step occurs on March 7 when Mohamed goes to KC for biometrics, i.e., fingerprinting and eye scans. After that, if we're lucky, another interview will be waived, and the green card will be made permanent. There shouldn't be any reason for another interview, since the marriage is obviously a real one, but with the current anti-immigration and anti-Muslim sentiments, who knows?
Adventures in wildlife: a few months ago, we began hearing a gnawing sound from under the back deck. It's possible, as has happened before, for small animals to get under the deck. Rabbits frequently take refuge there from Kimber's now rather half-hearted attempts to capture them. Several years ago, I caught a rather nasty looking possum, which I named Flavio, and released him farther out in the country. This time, we finally went to the Department of Wildlife and borrowed a no-kill trap. After a couple of fruitless nights, Flavio, Jr., went for the bait (roast beef wrapped around some hummus, in case he was an ethnic type). We put the rather sweet possum in the car and released him at a state park. But then the gnawing returned. Flavio III? Mrs. Flavio? The question was answered when Mohamed took a load of laundry to the basement and discovered a giant dead rat that had gnawed its way into the basement and plummeted (conveniently) into a dustpan. Whether it died from the fall or from all the undigested wood and concrete is unknown. In either case, there are more pleasant experiences than finding a rat the size of a squirrel dead in your cellar.
The import of the visit was almost overshadowed when, the night before at about 10, we noticed that the house was feeling quite chilly. A little investigation revealed that the furnace had gone out. We got out a 40-year old electric blanket (twenty years younger than the electric heating pad that I sometimes, rather fearfully, drag out). Three quarters of the blanket still worked. The next day, after our return from the cancer center, the heating guy came. He said that it wasn't the furnace, but rather the breaker panel, which was so old that parts weren't available and would need to be replaced. The good news was that we were having warmer than normal temperatures, though still below freezing at night; the bad news was that they wouldn't be able to install the new panel until Monday. Off we went to Lowe's to buy a space heater, which didn't really seem to do much good. Friday, however, the electrician from the heating company called to say that he thought he could solve the problem. He arrived a little later, said that the breaker box, despite being the original one from when the house was built in 1968, was still good. He went off to get a new breaker to replace the one that controlled the furnace, returned in 30 minutes, and voilà the furnace roared back to life. So as I write this Saturday morning, we are back to normal, not bundled up huddled close to a space heater.
On other fronts, as I may have said, Mohamed has had his green card for two years. The first two years, though granting the privileges of work and travel, are "conditional," and after that time, one must apply for "removal of conditions." The point is to guarantee that green cards issued through marriage to a citizen have not been based on marriages of convenience. I had misread the instructions and thought that the new application should be submitted at least 90 days before the expiration of the old card. It didn't seem logical that the deadline was any time within the 90 days before the expiration since that wouldn't give the government sufficient time to evaluate the material before the green card expired. What happens, however, is that the materials are due in the 90 days before expiration, following which the CIS issues an automatic one-year extension. The next step occurs on March 7 when Mohamed goes to KC for biometrics, i.e., fingerprinting and eye scans. After that, if we're lucky, another interview will be waived, and the green card will be made permanent. There shouldn't be any reason for another interview, since the marriage is obviously a real one, but with the current anti-immigration and anti-Muslim sentiments, who knows?
Adventures in wildlife: a few months ago, we began hearing a gnawing sound from under the back deck. It's possible, as has happened before, for small animals to get under the deck. Rabbits frequently take refuge there from Kimber's now rather half-hearted attempts to capture them. Several years ago, I caught a rather nasty looking possum, which I named Flavio, and released him farther out in the country. This time, we finally went to the Department of Wildlife and borrowed a no-kill trap. After a couple of fruitless nights, Flavio, Jr., went for the bait (roast beef wrapped around some hummus, in case he was an ethnic type). We put the rather sweet possum in the car and released him at a state park. But then the gnawing returned. Flavio III? Mrs. Flavio? The question was answered when Mohamed took a load of laundry to the basement and discovered a giant dead rat that had gnawed its way into the basement and plummeted (conveniently) into a dustpan. Whether it died from the fall or from all the undigested wood and concrete is unknown. In either case, there are more pleasant experiences than finding a rat the size of a squirrel dead in your cellar.
Saturday, January 16, 2016
Yesterday (Friday, Jan. 15) was presumably our last visit to the KU Cancer Center in KC. The waiting rooms were all very crowded. While we were waiting for the scans--luckily for a short time--a woman across the room began a conversation with me. She was accompanied by a man who seemed to be wearing the gaudiest, most mismatched plaid pajamas imaginable. "Do you have cancer? she asked, as if I might be there on a field trip. She went on to describe her sister's death in somewhat gruesome detail. And then she, now joined by her companion, launched into a praise-the-Lord-with-whom-all-things-can-be-cured rant . I was tempted so ask where He was when her sister died, but bit my tongue. I was called for my tests before I said anything untoward.
They did the blood draws, leaving an IV port in my arm for introduction of the contrast during the CT scans. And then I sat for about half an hour in the least comfortable part of the Center, drinking my two huge glasses of water. The scans were quickly done. I don't have to undress for these, just pull my pants down around my ankles, a process a little more complicated since I was wearing suspenders under my shirt.
Next we went up one floor to meet with the new oncologist, Dr. Hashmi. The waiting room was exceptionally packed, but we were called immediately, and after the taking of vitals, Dr. Hashmi arrived with no wait at all. He was fully informed about my case and already had some of the results. We liked the thoroughness with which he discussed what was happening and future options. The blood work was all within the normal range. The tumor on my spine, which had been radiated two months ago, had not grown, so evidently the radiation worked. There were two growths on the adrenal glands just above my left (cancerous) kidney that had grown somewhat, but not enough for immediate action. One new development was that if/when the Votrient stops being effective, there is a new class of drugs that have recently been developed and which would be the new next step of choice. (One of these is Opdivo, which I've seen advertised on TV for a specific type of lung cancer, but which also works on kidney cancer.) For the moment, though, we'll continue with the current regimen.
We had a reunion with Jennifer, the Physician Assistant to Dr. Van and someone whom we like a lot, and then a consultation with Kathy, Dr. Hamshi's rather hyperactive P.A. From now on we'll see Dr. Hashmi at a local hospital. That arrangement is obviously more convenient than having to drive to KC for each test or appointment, but it is also encouraging to know that our oncologist is affiliated with KU Med.
I can't eat before CT scans, so we met our friend TJ at a nearby breakfast and lunch restaurant, where I wolfed down eggs benedict Florentine, and we all chattered away. For some reason, despite not having had my morning nap, I still had energy. Indeed, I stayed awake the whole drive back to Topeka, though then I fell soundly asleep for two hours.
They did the blood draws, leaving an IV port in my arm for introduction of the contrast during the CT scans. And then I sat for about half an hour in the least comfortable part of the Center, drinking my two huge glasses of water. The scans were quickly done. I don't have to undress for these, just pull my pants down around my ankles, a process a little more complicated since I was wearing suspenders under my shirt.
Next we went up one floor to meet with the new oncologist, Dr. Hashmi. The waiting room was exceptionally packed, but we were called immediately, and after the taking of vitals, Dr. Hashmi arrived with no wait at all. He was fully informed about my case and already had some of the results. We liked the thoroughness with which he discussed what was happening and future options. The blood work was all within the normal range. The tumor on my spine, which had been radiated two months ago, had not grown, so evidently the radiation worked. There were two growths on the adrenal glands just above my left (cancerous) kidney that had grown somewhat, but not enough for immediate action. One new development was that if/when the Votrient stops being effective, there is a new class of drugs that have recently been developed and which would be the new next step of choice. (One of these is Opdivo, which I've seen advertised on TV for a specific type of lung cancer, but which also works on kidney cancer.) For the moment, though, we'll continue with the current regimen.
We had a reunion with Jennifer, the Physician Assistant to Dr. Van and someone whom we like a lot, and then a consultation with Kathy, Dr. Hamshi's rather hyperactive P.A. From now on we'll see Dr. Hashmi at a local hospital. That arrangement is obviously more convenient than having to drive to KC for each test or appointment, but it is also encouraging to know that our oncologist is affiliated with KU Med.
I can't eat before CT scans, so we met our friend TJ at a nearby breakfast and lunch restaurant, where I wolfed down eggs benedict Florentine, and we all chattered away. For some reason, despite not having had my morning nap, I still had energy. Indeed, I stayed awake the whole drive back to Topeka, though then I fell soundly asleep for two hours.
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