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.
Wednesday, August 21, 2013
Godot
I was wondering how interesting a blog about waiting could be ... and then remembered there's a whole, very famous, play about waiting. So while this blog will certainly not get rave reviews, maybe meditating on the act of waiting holds some allure.
Interesting or not, today was about waiting, after I got my stiches out from the hole in my arm cut during the first surgery. It looks shockingly big and ugly, but in another few months, I may miss that it was only a modest shark bite.
Today's waiting played out in the background like a quiet stereo, or the beautiful Gerbera daisy bouquet Vicky brought, as I sat at my desk and got some work done. After rushing all the medical records to MD Anderson, including dozens of pages of fax and two separate overnight Fed Ex packages, they set my first appointment (the consultation where they will do some additional imaging and tests, but also lay out what they see as the treatment path) ... for September 10th, three weeks away, 6 weeks after the "whoops" surgery, and, ironically, the day they would do the next surgery in the Denver hospital.
As my friend Michael said, I'm not dying, and if you're a big cancer facility, that may mean my situation isn't urgent enough to warrant prompt attention. I remember as a doctor's daughter never questioning that I would always be seen right away if something was amiss; I'm no longer a member of that privileged class.
There's only a knife's edge between being a squeaky wheel and annoying the very person who can help. So, Eve made another batch of calls to see if she could convince them to move my appointment up. Not sure what the plan B is, or if there is one. Michael reminded me of an old colleague who's now in line to be the next president of the American Cancer Society -- maybe he could help. Meanwhile, I can only hope that good things come (tomorrow already!) to those who wait.
Interesting or not, today was about waiting, after I got my stiches out from the hole in my arm cut during the first surgery. It looks shockingly big and ugly, but in another few months, I may miss that it was only a modest shark bite.
Today's waiting played out in the background like a quiet stereo, or the beautiful Gerbera daisy bouquet Vicky brought, as I sat at my desk and got some work done. After rushing all the medical records to MD Anderson, including dozens of pages of fax and two separate overnight Fed Ex packages, they set my first appointment (the consultation where they will do some additional imaging and tests, but also lay out what they see as the treatment path) ... for September 10th, three weeks away, 6 weeks after the "whoops" surgery, and, ironically, the day they would do the next surgery in the Denver hospital.
As my friend Michael said, I'm not dying, and if you're a big cancer facility, that may mean my situation isn't urgent enough to warrant prompt attention. I remember as a doctor's daughter never questioning that I would always be seen right away if something was amiss; I'm no longer a member of that privileged class.
There's only a knife's edge between being a squeaky wheel and annoying the very person who can help. So, Eve made another batch of calls to see if she could convince them to move my appointment up. Not sure what the plan B is, or if there is one. Michael reminded me of an old colleague who's now in line to be the next president of the American Cancer Society -- maybe he could help. Meanwhile, I can only hope that good things come (tomorrow already!) to those who wait.
Tuesday, August 20, 2013
so much (unnecessary) delay
why is it that the hospital here can't seem to forward the surgery report to MD Anderson? My surgeon doesn't understand, and keeps emailing/texting to agree that the delay is mystifying and she'll get it solved, but after a day, it hasn't been. So MD Anderson is on hold, b/c they want that before having their team meeting about what to do w/ me. AARGH.
Meanwhile, the folks who I work with seem to be, like everyone else, shocked, but dealing. And understanding that the only way I'm going to be able to get through this is to work when I can, because the better and more high quality distractions I have, the better my mood and state of mind will be.
Cyd, Joaquin's mom, who's a personal trainer, came this evening to put me on a regime so that I can be as strong as possible going into the surgery. I'm sure I'm going to be SORE tomorrow, but I have to believe that that's good. On the other hand, "the elf" Dr. Glen Swartout, my Dartmouth classmate alternative medicine guru who lives in Hawaii and looks exactly like Gandolf, gave me a list of the things I should cut out of my diet to be strong going into the surgery, and thereafter. I think of us as having a pretty healthy diet. After all, we live in Boulder, for heaven's sake, where organic and farmers markets and CSAs are a way of life. But I guess it's no surprise that it's the last increment (my beloved glass of wine @ dinner, that 3 pm cookie) that is the hardest to cut. No surprise, but right now, with all this tsouris, is when I REALLY REALLY want those treats. Of course.
Everyone keep his/her fingers crossed for UCH to come through and get the surgery records to TX, or I'm going to have to go down there and have a hissy fit. Seems absurd.
Meanwhile, the folks who I work with seem to be, like everyone else, shocked, but dealing. And understanding that the only way I'm going to be able to get through this is to work when I can, because the better and more high quality distractions I have, the better my mood and state of mind will be.
Cyd, Joaquin's mom, who's a personal trainer, came this evening to put me on a regime so that I can be as strong as possible going into the surgery. I'm sure I'm going to be SORE tomorrow, but I have to believe that that's good. On the other hand, "the elf" Dr. Glen Swartout, my Dartmouth classmate alternative medicine guru who lives in Hawaii and looks exactly like Gandolf, gave me a list of the things I should cut out of my diet to be strong going into the surgery, and thereafter. I think of us as having a pretty healthy diet. After all, we live in Boulder, for heaven's sake, where organic and farmers markets and CSAs are a way of life. But I guess it's no surprise that it's the last increment (my beloved glass of wine @ dinner, that 3 pm cookie) that is the hardest to cut. No surprise, but right now, with all this tsouris, is when I REALLY REALLY want those treats. Of course.
Everyone keep his/her fingers crossed for UCH to come through and get the surgery records to TX, or I'm going to have to go down there and have a hissy fit. Seems absurd.
Monday, August 19, 2013
so many calls!
Best nugget of the day, from the full pathology report of Dr Chris Fletcher from Harvard:
"risk of metastisis is exceedingly small."
Emphasis mine. Hooray! Not going to die from this! Now, just gotta work on saving my arm.
Which is how I spent most of the day, quite the ordeal . An exercise in threading much needed professional work through the small eyelets of time not spent talking to medical professionals. Oy! Extracting information from UCH, and from Boston, to send to MC Anderson in Houston, through the HIPPA maze, never mind finding the right people to find, send and receive info. And, of course, paying for it all.
Thank heavens for the work I did get to do! And for Laura Dombrower who brought chili and polenta. And for Eve Bluestein, Ben's friend's Sol's mom, who's a surgeon and spent her day off helping me make calls.
Prognosis is that there's going to be a lot of Houston this fall. If any of you knows people, restaurants, B&B's (for Bill and/or my mom), etc. PLEASE LET ME KNOW.
"risk of metastisis is exceedingly small."
Emphasis mine. Hooray! Not going to die from this! Now, just gotta work on saving my arm.
Which is how I spent most of the day, quite the ordeal . An exercise in threading much needed professional work through the small eyelets of time not spent talking to medical professionals. Oy! Extracting information from UCH, and from Boston, to send to MC Anderson in Houston, through the HIPPA maze, never mind finding the right people to find, send and receive info. And, of course, paying for it all.
Thank heavens for the work I did get to do! And for Laura Dombrower who brought chili and polenta. And for Eve Bluestein, Ben's friend's Sol's mom, who's a surgeon and spent her day off helping me make calls.
Prognosis is that there's going to be a lot of Houston this fall. If any of you knows people, restaurants, B&B's (for Bill and/or my mom), etc. PLEASE LET ME KNOW.
Sunday, August 18, 2013
So many questions
I am writing a blog so that those of you who want to know about what's happening with my recent cancer diagnosis can follow the journey. I'll post when there are updates. Here's where things stand this evening:
1991 (ish) - I played volleyball at an EDF staff retreat and this huge bruise appeared on my right forearm. I had it checked out when I got back to Boulder. Every five to seven years, I got it looked at. The answer was always the same: a venous malformation. Nothing to worry about. I could get it fixed if it bugged me, but it wasn't life or limb threatening.
April 2013 - family went to Vernal for 5 days. Ben told me I couldn't come mountain biking because my arm would start to swell and then I'd want to quit and he and Bill would want to go further. That was it. I decided I needed to get my arm fixed, so that I wouldn't miss out on activities w/ my kid. - Saw vascular surgeon in Denver who sent me to interventional radiologist. Radiologist ordered MRI and then does an ultrasound guided needle biopsy. Lots of trips to Denver. New diagnosis -- some kind of fatty tumor, but not a venous malformation. He sent me to a plastic surgeon.
Here's a photo of me from Ben's school's auction. You can see the lump on my arm:
June - Plastic surgeon sees me and schedules surgery for August 1st.
8/1 - Tumor removed and site on my arm covered with a skin graft taken from my upper thigh.
8/12 - Surgeon calls to say that pathology report suggests "mesanchymal neoplasm with cytologic atypia." I.e., they don't know what the tumor is, so they've sent it out for 2nd opinion.
8/14 - Surgeon calls again. New diagnosis of myxoinflammatory fibroblastic sarcoma. Refers me to a different surgeon. I'm at a water conference for the day and tell friends there, all of whom are very sweet and surprised. Barney White emails with some folks he knows to find names of oncologists who may be able to help. I go to a reception and fundraiser and talk to more people, all of whom are, again, kind, surprised, and sympathetic. I go to Ladies Night, which is the same. Marilyn starts emailing to get names of specialists. The fog begins. WTF?! How did I end up with cancer? Especially from something that's been there for 20 years.
8/15 - Bill and I go to Denver to talk to the new surgeon. Here's the problem: The surgery done on 8/1 was not done as if the tumor was a cancer. With cancer, surgeons take not only the tumor but a "safe margin" of a few centimeters to make sure they get it all. That didn't happen. The pathology report says the malignant sarcoma cells extended all the way to the edges of the tumor. So, there is a high probability that the surgery left cancer in my arm. And, it must come out or it could spread.
The surgeon describes a surgery to take out more of my arm to get that desired "clean margin." Doing so will require removing some muscle (something that didn't happen in 1st surgery). Muscle doesn't grow back, so removing muscle results in a loss of function. This muscle allows me to flex my wrist up, and to wiggle my fingers. This surgery would be the first step in this process. Because it would go so deep, a skin graft couldn't be done at the same time. Rather, the wound would be bandaged and left to heal for 6-8 weeks. Then there could be another surgery to put a skin graft on. After that healed, I could do physical and occupational therapy. After six months, we'd have a better idea of how much function I had lost, because PT and OT would help me regain strength and teach my remaining muscles to compensate. Only after that process would there be consideration of reconstructive surgery.
Bill and I leave at 2, after 90 minutes there. He asks if I want to get lunch. ARE YOU KIDDING?! I'M HANGING ON BY A THREAD NOT TO HAVE MY NAUSEA OVERWHELM ME. He agrees. I go back to my conference. He goes home where Ben won't even let Bill give him a report. Bill goes for a bike ride to process.
Safe to describe the house as very quiet this evening. Shell shocked. Annie and Emma come by to talk; everyone is trying to process. Mike and Jen come by with tequila and chocolate -- so lovely.
I cry for the 1st time when I have to tell my mom over the phone. I make contact w/ my long-time internist, who was on sabbatical for the last six months. She's terrific and promises to do research and be back in touch. Shabbat shalom, sort of.
As many of you know, I'm pretty sleep challenged to begin with; little sleep happens. One reason is that -- for the 1st time since the surgery, my arm hurts. Is that psychosomatic or what?! Since two days after the surgery, what hurt was the skin graft donor site on my thigh, not my arm.
8/16 - Vicky Mandell and I go for a walk at Chautauqua; she gives my arm a kiss (the power of a mom's healing). Ben goes to climbing team try outs. We do errands. I have a long conversation w/ Shelly, my sister in law, which is comforting, sort of, because nothing really is very. Lots of time on the computer doing research. A conversation w/ our neighbors, Laura and Kal; we've been so busy this summer (them more than us, but both) that the 4 of us haven't sat down together once, and we're all rolling our eyes that it's taken a cancer diagnosis to make that happen!
Later, Ben stays home for pizza and watches a dumb movie on Netflicks. Bill and I go out for dinner and then see Woody Allen's new movie about a woman whose life really falls apart. Bill comments that it's very depressing (although Cate Blanchett is terrific). But, we agree that it's somehow comforting because her situation makes mine look not quite so bad by comparison. I take a sleeping pill which is the right thing to do.
8/17 (today) - I take Val up Sanitas and Bill goes for a long bike ride, even though it's pretty hot. I spend the rest of the day talking to people (Susan Hadley, my law school roomie from Boston; Eve Bluestein, a surgeon from here; Shelly, my mom), emailing (Hillary, my doc; folks on the sarcoma list serve) and doing more research. Everyone is talking to their go-to experts for advice. The emerging consensus is that I should go to MD Anderson in Houston for a 2nd opinion about treatment course and options. Of all the sarcoma centers in the country, it's the one in a city where we really know no one. But, it's also the best. So, that'll be the task for tomorrow.
1991 (ish) - I played volleyball at an EDF staff retreat and this huge bruise appeared on my right forearm. I had it checked out when I got back to Boulder. Every five to seven years, I got it looked at. The answer was always the same: a venous malformation. Nothing to worry about. I could get it fixed if it bugged me, but it wasn't life or limb threatening.
April 2013 - family went to Vernal for 5 days. Ben told me I couldn't come mountain biking because my arm would start to swell and then I'd want to quit and he and Bill would want to go further. That was it. I decided I needed to get my arm fixed, so that I wouldn't miss out on activities w/ my kid. - Saw vascular surgeon in Denver who sent me to interventional radiologist. Radiologist ordered MRI and then does an ultrasound guided needle biopsy. Lots of trips to Denver. New diagnosis -- some kind of fatty tumor, but not a venous malformation. He sent me to a plastic surgeon.
Here's a photo of me from Ben's school's auction. You can see the lump on my arm:
June - Plastic surgeon sees me and schedules surgery for August 1st.
8/1 - Tumor removed and site on my arm covered with a skin graft taken from my upper thigh.
8/12 - Surgeon calls to say that pathology report suggests "mesanchymal neoplasm with cytologic atypia." I.e., they don't know what the tumor is, so they've sent it out for 2nd opinion.
8/14 - Surgeon calls again. New diagnosis of myxoinflammatory fibroblastic sarcoma. Refers me to a different surgeon. I'm at a water conference for the day and tell friends there, all of whom are very sweet and surprised. Barney White emails with some folks he knows to find names of oncologists who may be able to help. I go to a reception and fundraiser and talk to more people, all of whom are, again, kind, surprised, and sympathetic. I go to Ladies Night, which is the same. Marilyn starts emailing to get names of specialists. The fog begins. WTF?! How did I end up with cancer? Especially from something that's been there for 20 years.
8/15 - Bill and I go to Denver to talk to the new surgeon. Here's the problem: The surgery done on 8/1 was not done as if the tumor was a cancer. With cancer, surgeons take not only the tumor but a "safe margin" of a few centimeters to make sure they get it all. That didn't happen. The pathology report says the malignant sarcoma cells extended all the way to the edges of the tumor. So, there is a high probability that the surgery left cancer in my arm. And, it must come out or it could spread.
The surgeon describes a surgery to take out more of my arm to get that desired "clean margin." Doing so will require removing some muscle (something that didn't happen in 1st surgery). Muscle doesn't grow back, so removing muscle results in a loss of function. This muscle allows me to flex my wrist up, and to wiggle my fingers. This surgery would be the first step in this process. Because it would go so deep, a skin graft couldn't be done at the same time. Rather, the wound would be bandaged and left to heal for 6-8 weeks. Then there could be another surgery to put a skin graft on. After that healed, I could do physical and occupational therapy. After six months, we'd have a better idea of how much function I had lost, because PT and OT would help me regain strength and teach my remaining muscles to compensate. Only after that process would there be consideration of reconstructive surgery.
Bill and I leave at 2, after 90 minutes there. He asks if I want to get lunch. ARE YOU KIDDING?! I'M HANGING ON BY A THREAD NOT TO HAVE MY NAUSEA OVERWHELM ME. He agrees. I go back to my conference. He goes home where Ben won't even let Bill give him a report. Bill goes for a bike ride to process.
Safe to describe the house as very quiet this evening. Shell shocked. Annie and Emma come by to talk; everyone is trying to process. Mike and Jen come by with tequila and chocolate -- so lovely.
I cry for the 1st time when I have to tell my mom over the phone. I make contact w/ my long-time internist, who was on sabbatical for the last six months. She's terrific and promises to do research and be back in touch. Shabbat shalom, sort of.
As many of you know, I'm pretty sleep challenged to begin with; little sleep happens. One reason is that -- for the 1st time since the surgery, my arm hurts. Is that psychosomatic or what?! Since two days after the surgery, what hurt was the skin graft donor site on my thigh, not my arm.
8/16 - Vicky Mandell and I go for a walk at Chautauqua; she gives my arm a kiss (the power of a mom's healing). Ben goes to climbing team try outs. We do errands. I have a long conversation w/ Shelly, my sister in law, which is comforting, sort of, because nothing really is very. Lots of time on the computer doing research. A conversation w/ our neighbors, Laura and Kal; we've been so busy this summer (them more than us, but both) that the 4 of us haven't sat down together once, and we're all rolling our eyes that it's taken a cancer diagnosis to make that happen!
Later, Ben stays home for pizza and watches a dumb movie on Netflicks. Bill and I go out for dinner and then see Woody Allen's new movie about a woman whose life really falls apart. Bill comments that it's very depressing (although Cate Blanchett is terrific). But, we agree that it's somehow comforting because her situation makes mine look not quite so bad by comparison. I take a sleeping pill which is the right thing to do.
8/17 (today) - I take Val up Sanitas and Bill goes for a long bike ride, even though it's pretty hot. I spend the rest of the day talking to people (Susan Hadley, my law school roomie from Boston; Eve Bluestein, a surgeon from here; Shelly, my mom), emailing (Hillary, my doc; folks on the sarcoma list serve) and doing more research. Everyone is talking to their go-to experts for advice. The emerging consensus is that I should go to MD Anderson in Houston for a 2nd opinion about treatment course and options. Of all the sarcoma centers in the country, it's the one in a city where we really know no one. But, it's also the best. So, that'll be the task for tomorrow.
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