I will have my surgery @ MD Anderson on Wednesday 9/25. A little far out but they've decided that, since the tumor is out and they don't see any other nodules on the MRI, and they believe this is a slow growing cancer, waiting that long is acceptable, especially given that it's the first day they can get the hand/wrist reconstruction surgeon they want in the operating room with the surgery oncologist together. I'll meet Dr. Chang, the reconstruction surgeon Tuesday or Monday before (and have a bunch of tests and sign a bunch of consent forms). Shelly will come to Boulder to make sure Ben eats, sleeps, climbs and does his homework; my mom will come camp out in Houston as long as I'm there, and Bill will come to Houston for the surgery (two, maybe three nights) and then go back to Boulder. It will depend on whether I'm out after 3 nights (which would mean relatively little muscle/tendon/vascular damage and I turn out to be a quick healer) or 7 (i.e., more damage and slower healing) who escorts me home. Mom will return to Cleveland once I'm released. Let the logistics begin.
Meanwhile we're here in Cleveland. My BFF from here is Meg. We've known each other since I was 4, we walked to school together every day and processed the night and the day, our lives have circled each other's like ribbons -- sometimes touching (we both lived in southern California for a year) and sometimes passing by -- but always in touch. She came to pick us at the airport, even though there was no need. She wanted to see me, and give me a hug, and we promised beforehand we wouldn't cry and we didn't, although it took some strategic glances away. Made me feel so safe inside. You, my friends and family are what are getting me through this!
Now on to the big wedding and a chance to ignore, if not forget, the subject of this blog.
Saturday, August 31, 2013
Thursday, August 29, 2013
Good News
This morning, Bill and I met with several doctors and nurses at MD Anderson's Sarcoma Center. While the appointment times had no relationship to reality, we're so relieved with the bottom line that we're rolling with it.
We saw a nurse, a fellow, the oncologist (Patel), the cancer surgeon (Satcher) and his PA (Angela). While they don't have the radiologist reports back yet from yesterday's tests, the doc's both seemed confident that the CT scan shows no evidence of metastasis. So, it hasn't spread and I don't need chemo. Also, even though they don't have evidence of when the growth on my arm became cancer, based on the type of sarcoma, they all said it was "low grade." Hurray!
The oncologist said he would not have a continuing role (because what he does is chemo). He said the next step was likely surgery and radiation. The surgeon said he wasn't sure radiation would be necessary. Their next step is to take my case to the team, the sarcoma conference, which will happen next Tuesday. At that meeting, they'll get concurrence about the path forward.
About the only thing they seem to agree w/ CU on is that the next step should be surgery to get to safe margins. Those of you who have been reading this may remember that the CU team told me I'd likely have 3 surgeries: removal to safe margins, then a graft after there was some healing, then reconstruction after 6 months of PT/OT. MD Anderson, on the other hand, expects to do one surgery, with all three things happening @ once. I would be in the hospital for 3-7 days. Plus a day early for pre-op. The cancer surgeon would use the MRI as a guide (he said he could see areas that need to be excised already) because it provides some evidence of where cancer cells remains. During the surgery, they would also be taking little chunks of my tissue and looking at them under a microscope until the samples were clean. At that point, he'd turn the operation over to a plastic surgeon who specializes in hands & wrists to do what reconstruction is warranted.
One surgery means two less hospital interventions, so two less opportunities to get MRSA. Seems like a no-brainer in terms of risk management. Also, the surgeon looked incredulous about the 1 - 5 cm margin comment from CU. He said, based on what he sees in yesterday's MRI, while it will definitely be necessary to go into the muscle, they do not anticipate the need to get even close to amputation.
On the plane home. The PA is supposed to call about scheduling, but probably not until next week. So, while I was hoping to have a date when we left, we won't know until after the weekend when the next step gets taken.
We saw a nurse, a fellow, the oncologist (Patel), the cancer surgeon (Satcher) and his PA (Angela). While they don't have the radiologist reports back yet from yesterday's tests, the doc's both seemed confident that the CT scan shows no evidence of metastasis. So, it hasn't spread and I don't need chemo. Also, even though they don't have evidence of when the growth on my arm became cancer, based on the type of sarcoma, they all said it was "low grade." Hurray!
The oncologist said he would not have a continuing role (because what he does is chemo). He said the next step was likely surgery and radiation. The surgeon said he wasn't sure radiation would be necessary. Their next step is to take my case to the team, the sarcoma conference, which will happen next Tuesday. At that meeting, they'll get concurrence about the path forward.
About the only thing they seem to agree w/ CU on is that the next step should be surgery to get to safe margins. Those of you who have been reading this may remember that the CU team told me I'd likely have 3 surgeries: removal to safe margins, then a graft after there was some healing, then reconstruction after 6 months of PT/OT. MD Anderson, on the other hand, expects to do one surgery, with all three things happening @ once. I would be in the hospital for 3-7 days. Plus a day early for pre-op. The cancer surgeon would use the MRI as a guide (he said he could see areas that need to be excised already) because it provides some evidence of where cancer cells remains. During the surgery, they would also be taking little chunks of my tissue and looking at them under a microscope until the samples were clean. At that point, he'd turn the operation over to a plastic surgeon who specializes in hands & wrists to do what reconstruction is warranted.
One surgery means two less hospital interventions, so two less opportunities to get MRSA. Seems like a no-brainer in terms of risk management. Also, the surgeon looked incredulous about the 1 - 5 cm margin comment from CU. He said, based on what he sees in yesterday's MRI, while it will definitely be necessary to go into the muscle, they do not anticipate the need to get even close to amputation.
On the plane home. The PA is supposed to call about scheduling, but probably not until next week. So, while I was hoping to have a date when we left, we won't know until after the weekend when the next step gets taken.
Wednesday, August 28, 2013
Test Day
Getting off the plane in Houston was, as so often happens for those of us with the good fortune of living in Colorado, a shocking, intense blast of wet heat. My hair curled instantly.
The shuttle to the hotel is free, but infrequent; however, my timing was fortuitous and I didn't have to wait too long. The hotel is in a super industrial area -- train tracks, warehouses, open yards of supplies, a housing project, not a store or restaurant in the vicinity -- but close to the hospital center. And there's a slightly more frequent shuttle for that. There's at least five hospitals on this "campus" and MD Anderson has a north and south cluster, each with several buildings.
The Sarcoma Center and all the imaging stations for today are in the main building. My identifier is my patient #, followed by my birthday. Everyone is nice, but sometimes, they don't bother to ask my name, even my last name. And the place, as I guess is true of most air conditioned environments, vacillates between freezing and sweltering.
There's probably thousands of patients here and I had a couple bad moments. The sweet hand drawn pictures of the children cancer patients on the walls, all the women with scarves on their heads, the four amputees in the Sarcoma Center waiting area. WHAT AM I DOING HERE? HOW THE HELL CAN I BE THIS SICK? But I'm over it, at least for the moment.
I ate lunch at the cafeteria -- and could hear my father bitching about the food @ Mt Sinai. I flashed on how we smuggled milk shakes into my father-in-law in the hospital in CT. 'Nuf said. Even the latte was lousy, and the chocolate chip cookie remained 1/2 eaten -- which is saying something for those of you who know me well. So, for dinner I walked across the sky bridge to the nice hotel, where at least I'm having a decent Chardonnay. The salmon is farmed, but it IS Houston.
The waiting rooms have, with the exception of Xray, been packed. And behind. The times on the appointments seem to be pulled from thin air. So far, I've had check in (30 minutes late -- they didn't have a room -- really?!), blood work (45 min), chest Xray (15 min) & CT Scan (1 hr 15). The MRI desk said they were running 90 minutes late, but I should come on time for my check in anyway. Maybe a 'hope springs eternal' optimism. All of these procedures have been quick, though. Even the CT scan only lasted a couple minutes. The only slightly painful thing is the needle they've stuck in my arm to push in the "contrast" for the CT and MRI. For the CT it's iodine (not radioactive), but it's a lot so its a 20 gage needle. Huge!
Meanwhile, I missed three work events today. I did do a little work on the plane and was able to respond to email, and even do a small amount of thinking as I was waiting between and for appointments. Not the best environment for quality contemplation, but there's worse, I'm sure.
On the home front, Ben successfully switched to the advanced science class -- why they told him last year he didn't qualify is beyond us, but it's done, with no adverse effects, so wonderful. And thank goodness for the Ghayurs who are feeding and sheltering him for the night. I've been getting 'atta girl'/'we're rooting for you' emails, texts and FB posts all day; I've got great friends and family. And, Bill is in the air on his way down here to be in the room for the treatment plan consultation appointments (w/ oncologist and surgeon) tomorrow. Makes me cry, but then many things seem to!
The shuttle to the hotel is free, but infrequent; however, my timing was fortuitous and I didn't have to wait too long. The hotel is in a super industrial area -- train tracks, warehouses, open yards of supplies, a housing project, not a store or restaurant in the vicinity -- but close to the hospital center. And there's a slightly more frequent shuttle for that. There's at least five hospitals on this "campus" and MD Anderson has a north and south cluster, each with several buildings.
The Sarcoma Center and all the imaging stations for today are in the main building. My identifier is my patient #, followed by my birthday. Everyone is nice, but sometimes, they don't bother to ask my name, even my last name. And the place, as I guess is true of most air conditioned environments, vacillates between freezing and sweltering.
There's probably thousands of patients here and I had a couple bad moments. The sweet hand drawn pictures of the children cancer patients on the walls, all the women with scarves on their heads, the four amputees in the Sarcoma Center waiting area. WHAT AM I DOING HERE? HOW THE HELL CAN I BE THIS SICK? But I'm over it, at least for the moment.
I ate lunch at the cafeteria -- and could hear my father bitching about the food @ Mt Sinai. I flashed on how we smuggled milk shakes into my father-in-law in the hospital in CT. 'Nuf said. Even the latte was lousy, and the chocolate chip cookie remained 1/2 eaten -- which is saying something for those of you who know me well. So, for dinner I walked across the sky bridge to the nice hotel, where at least I'm having a decent Chardonnay. The salmon is farmed, but it IS Houston.
The waiting rooms have, with the exception of Xray, been packed. And behind. The times on the appointments seem to be pulled from thin air. So far, I've had check in (30 minutes late -- they didn't have a room -- really?!), blood work (45 min), chest Xray (15 min) & CT Scan (1 hr 15). The MRI desk said they were running 90 minutes late, but I should come on time for my check in anyway. Maybe a 'hope springs eternal' optimism. All of these procedures have been quick, though. Even the CT scan only lasted a couple minutes. The only slightly painful thing is the needle they've stuck in my arm to push in the "contrast" for the CT and MRI. For the CT it's iodine (not radioactive), but it's a lot so its a 20 gage needle. Huge!
Meanwhile, I missed three work events today. I did do a little work on the plane and was able to respond to email, and even do a small amount of thinking as I was waiting between and for appointments. Not the best environment for quality contemplation, but there's worse, I'm sure.
On the home front, Ben successfully switched to the advanced science class -- why they told him last year he didn't qualify is beyond us, but it's done, with no adverse effects, so wonderful. And thank goodness for the Ghayurs who are feeding and sheltering him for the night. I've been getting 'atta girl'/'we're rooting for you' emails, texts and FB posts all day; I've got great friends and family. And, Bill is in the air on his way down here to be in the room for the treatment plan consultation appointments (w/ oncologist and surgeon) tomorrow. Makes me cry, but then many things seem to!
Tuesday, August 27, 2013
Bill
Bill and Ben have started discussing what they would need to build, and how they would go about building, biomechanical means to restore function in my arm. Bill said he'd work on it the rest of his life. Makes me tear up even repeating that.
What I've been reading is contrary to what we heard at UCH. Lots of articles say do the restoration surgery at the same time as you get safe margins, not wait six months to see what rehab gets a patient. Also, even if it's just a surgery to get safe margins, the literature suggests that this is NOT going to be like the outpatient surgery I had earlier this month; average hospital stay is 7-10 days. I can't even imagine being in bed that long, but maybe our 3 friends who shattered tibia plateaus this summer will help me!
We're all a little anxious; tomorrow is a big day.
What I've been reading is contrary to what we heard at UCH. Lots of articles say do the restoration surgery at the same time as you get safe margins, not wait six months to see what rehab gets a patient. Also, even if it's just a surgery to get safe margins, the literature suggests that this is NOT going to be like the outpatient surgery I had earlier this month; average hospital stay is 7-10 days. I can't even imagine being in bed that long, but maybe our 3 friends who shattered tibia plateaus this summer will help me!
We're all a little anxious; tomorrow is a big day.
Monday, August 26, 2013
an odd ball wants to a member of the majority
Getting ready, psychologically and logistically for trip to Houston Wednesday. Learned a new term today. What I want, if surgery is indeed the recommended treatment is LIMB SALVAGE (rather than amputation). As odd ball as my cancer is (see next paragraph), limb salvage would put me in the majority of patients treated for a soft tissue sarcoma (STS) in an extremity (80%). This is one of those cases where I want, desperately!, to be a member of the majority!
Here's another tidbit. STS are rare (< 1% of all cancers), which I know I've said, but I've also been saying there are 20 kinds, because I saw a list that long somewhere. Apparently per an article I read today, there are over 70 kinds. The pathologist says mine is a "hybrid" of two relatively infrequent types, so the super odd-ball category. However, also from what I can tell from reading, the treatment for STS on an extremity doesn't seem to differ much based on type. All these different types make good work for pathologists, but may not be so relevant to patients.
Also, for those of you who've asked why I'm having a CT scan (and chest X-ray and MRI) rather than a PET scan, a couple tidbits. First, the tumor is gone. PET scans are good at differentiating between slow and fast growing (i.e. cancer) cells, once the patient has a baseline of which are which. W/o the baseline, it's hard to distinguish between the cells that are left. Second, there's a medical paper concluding that doing PET scans at the diagnosis stage for STS doesn't help in the long run choosing treatment (which mostly involves surgery to remove the tumor w/ a wide, safe margin).
Here's another tidbit. STS are rare (< 1% of all cancers), which I know I've said, but I've also been saying there are 20 kinds, because I saw a list that long somewhere. Apparently per an article I read today, there are over 70 kinds. The pathologist says mine is a "hybrid" of two relatively infrequent types, so the super odd-ball category. However, also from what I can tell from reading, the treatment for STS on an extremity doesn't seem to differ much based on type. All these different types make good work for pathologists, but may not be so relevant to patients.
Also, for those of you who've asked why I'm having a CT scan (and chest X-ray and MRI) rather than a PET scan, a couple tidbits. First, the tumor is gone. PET scans are good at differentiating between slow and fast growing (i.e. cancer) cells, once the patient has a baseline of which are which. W/o the baseline, it's hard to distinguish between the cells that are left. Second, there's a medical paper concluding that doing PET scans at the diagnosis stage for STS doesn't help in the long run choosing treatment (which mostly involves surgery to remove the tumor w/ a wide, safe margin).
Friday, August 23, 2013
Firsts
Having quashed the anxiety of jettisoning three important work meetings/appearances for this, I can -- almost happily -- report that MD Anderson has providing me a very compact schedule next week. I show up early Wednesday afternoon, which means I can fly at oh-dark thirty that morning and not go Tuesday night. I then have 4 tests (blood, chest Xray, CT & MRI), each with its own foreplay that go from early afternoon until 11 pm. Bill will fly in late that night, so he 'll get Ben off to school and even see him after. Thursday am we'll see, together (always better to have two sets of ears than one) the oncologist and also a surgeon -- which obviously foreshadows what they think is going to happen. Then we'll fly home. If i'm not totally freaked out I'll be able to swing by Paul Frohardt's retirement party from the Water Quality Control Commission before going home. But, probably not that even AND Ladies Night (they'll understand -- they always do, that's why they are the Ladies). Then we'll unpack and pack for the happier event of our niece's big event -- 30th birthday AND wedding over Labor Day weekend in Kiawah South Carolina, by way of Cleveland to pick up my mom.
Meanwhile, we said a "shehecheyanu," the Jewish prayer to celebrate firsts, at Shabbat tonight, because this was our first Shabbat family dinner ever with a HIGH SCHOOLER. Who is very excited about high school. He said the adrenaline is pulsing. His favorite classes are Tech Lab (an elective so no surprise there, but the teacher is eating up what Ben's done with drones and programming because the robotics team is currently all seniors and Ben may be the next generation) and Geometry (thank goodness he finished Algebra this summer! He concedes -- with great pain -- that I was right, he loves it).
One more thing. Some of you have asked how the growth on my arm could have been mis-daignosed for so many years. My understanding of what happened is that it was not. The growth was a venous malformation. But, sometime recently -- maybe a year, maybe two, or maybe a couple months -- it transformed into a malignancy. Just like all the other cancer patients who one day have healthy breasts, prostrates or blood, and then all of a sudden don't.
Finally I had a good laugh this evening. I got home and scooped up the mail. It included a patient satisfaction survey from UCH. Too rich to say anything. Happy weekend!
Meanwhile, we said a "shehecheyanu," the Jewish prayer to celebrate firsts, at Shabbat tonight, because this was our first Shabbat family dinner ever with a HIGH SCHOOLER. Who is very excited about high school. He said the adrenaline is pulsing. His favorite classes are Tech Lab (an elective so no surprise there, but the teacher is eating up what Ben's done with drones and programming because the robotics team is currently all seniors and Ben may be the next generation) and Geometry (thank goodness he finished Algebra this summer! He concedes -- with great pain -- that I was right, he loves it).
One more thing. Some of you have asked how the growth on my arm could have been mis-daignosed for so many years. My understanding of what happened is that it was not. The growth was a venous malformation. But, sometime recently -- maybe a year, maybe two, or maybe a couple months -- it transformed into a malignancy. Just like all the other cancer patients who one day have healthy breasts, prostrates or blood, and then all of a sudden don't.
Finally I had a good laugh this evening. I got home and scooped up the mail. It included a patient satisfaction survey from UCH. Too rich to say anything. Happy weekend!
Thursday, August 22, 2013
Relativity
Good news: thanks to Eve's persistence, I am the proud owner of two test and one Dr appointments for next week at MD Anderson. Hooray! Thank you Eve.
Accepting these appointments meant ditching some work, which was hard, even though there's absolutely no question about the priorities. Still. So I spent the day looking for someone else to testify to the New Mexico Legislature's Drought Committee on the environmental aspects of the Colorado River Basin Study. Ultimately, I was able to give their legislative counsel some options -- and he seemed truly surprised and appreciative that I had bothered to do so, as opposed just to canceling. What's funny is that, when I agreed to do the New Mexico testimony, I had to give up two other work related meetings. A friend suggested I just accept that Wednesday August 28 2013 was simply not going to be a day for me to talk about the Colorado River, for a change
Ben started high school, got a great locker (upper, in the cafeteria -- who knew?), said he liked his teachers. He was pretty animated about it, too, which is nice. I made chicken saag for dinner, we ate on the deck (not too hot!). Afterwards, I joined the Ladies at the Boulder Museum of Contemporary Art (BMOCA) for a "cosmos and collage" event. Here's my product:
Leaving, I grossed the Ladies out by showing them my arm, causing one of them almost to pass out. What's funny is that, as horrifying as it looks, it makes me wistful, because the next step is likely to result in something that's going to look worse. Everything is relative.
Accepting these appointments meant ditching some work, which was hard, even though there's absolutely no question about the priorities. Still. So I spent the day looking for someone else to testify to the New Mexico Legislature's Drought Committee on the environmental aspects of the Colorado River Basin Study. Ultimately, I was able to give their legislative counsel some options -- and he seemed truly surprised and appreciative that I had bothered to do so, as opposed just to canceling. What's funny is that, when I agreed to do the New Mexico testimony, I had to give up two other work related meetings. A friend suggested I just accept that Wednesday August 28 2013 was simply not going to be a day for me to talk about the Colorado River, for a change
Ben started high school, got a great locker (upper, in the cafeteria -- who knew?), said he liked his teachers. He was pretty animated about it, too, which is nice. I made chicken saag for dinner, we ate on the deck (not too hot!). Afterwards, I joined the Ladies at the Boulder Museum of Contemporary Art (BMOCA) for a "cosmos and collage" event. Here's my product:
Leaving, I grossed the Ladies out by showing them my arm, causing one of them almost to pass out. What's funny is that, as horrifying as it looks, it makes me wistful, because the next step is likely to result in something that's going to look worse. Everything is relative.
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