It has finally sunk in that this process is going to take awhile. In that mindset, it becomes even more important to make sure to have things to look forward to, to be careful not to put life on hold as much as I can help it. So, I already got myself a birthday present for NEXT August! Big Billy Joel fan I am. And he's coming to Boston the week after my birthday. Who was online one minute after the opening of ticket sales began? ME ME ME! It's the kind of splurge I'd not normally do. I felt a little guilty about it. We got floor seats. 15th row. Center. Oopsie. Must have been my fat finger making a little mistake. Too late to fix it now. Go big or don't go, right?
Other than Billy Joel, it's been an eventful week. I met the reconstructive surgeon who will put me back together after I say bye-bye to the boob. I went back to work (part time for now). I was accepted into the Livestrong Project at the YMCA. I had a wig fitting. And yesterday I had a port implanted, and had the second infusion. Lots to talk about.
I really liked the reconstructive surgeon, Matthew Carty at Brigham and Women's. He took his time with me, smiled a lot, was confident without being cocky, and honestly caring. I learned that there are many options available after mastectomy. You can sew it up and stay flat, or you could get re-made with a gel or saline implant, or you could get a reconstruction with tissue taken from your own body. A one-sided mastectomy with staying flat doesn't appeal to my physical therapist mind that is trained to strive for functional symmetry. I thought over time that the weight imbalance would mess with my already messed up neck (fused at C5-6). With an implant, I have a huge fear of it breaking down and making me ill in other ways. Plus, the long term maintenance was a huge turn off to me . Did you know that an implant has to be replaced every 10 years or so, and checked yearly? No thank you. After much research and weighing pros and cons of all of them, I gravitated toward using my own tissue. But that wasn't a slam dunk. First the reconstructive surgeon had to make sure I was fat enough. Can you imagine? I defiantly showed him the growing fat stores in my lower abdomen and after some measurements and pre-op pictures, his conclusion was that yes, I am indeed fat enough. Never been so happy to to hear that! But the key for success in this procedure is the vessels, and for him to be sure it would be the right thing for me, he ordered a CT scan, to make sure they were anatomically advantaged for what he needs to do. And thankfully, they are. I'll be having what is called DIEP flap, which according to the definition, is when the deep inferior epigastric perforator vessels (DIEP), as well as the skin and fat connected to them, are removed from the lower abdomen and transferred to the chest to reconstruct a breast after mastectomy, without the sacrifice of any of the lower abdominal muscles. How brilliant! The surgery will occur sometime in the first week in May, and then I'll be very restricted for 12 solid weeks in order to heal properly. No working, no housework, no lifting, no exercising, absolutely no use of core muscles. I'll be wearing a binder around my abdomen until August. REALLY looking forward to August!
Having learned about the rigor of what I'll be subjected to for surgery, and the long recovery, it's not lost on me that I need to be in the best shape possible going into it. But I don't want to over do it either, during these 12 weeks of chemotherapy that will make me tired and lower my resistance to illness. I found the perfect compromise. I could make up my own program, I certainly know how, but there's something motivating about being in a group setting. I discovered The Livestrong Project. It is a 12 week program at certain YMCA's that meets twice a week for group exercise for people who have or have had cancer. Coincidentally the YMCA less than 2 miles from me offers it, and I was waitlisted for about 2 days before they let me know I could join their new group next week! The instructors are specially trained with management of exercisers with cancer, and I'll get to meet other people in my situation who are exercise minded. It's limited to 12 people, which is small enough to be friendly and big enough to be fun. I found out about it on a cancer support website. It's funded by a grant from a pharmaceutical company, and grant = free, so very affordable. And what perfect timing. Need to get those abs as strong as possible since they'll be on a 3 month siesta starting in May.
Yesterday was a very long day as I had a port implanted in the morning, and my second infusion in the afternoon. I can't say enough great things about the care I have been receiving. I was a bit anxious to have the port put in - will it hurt during the procedure? How long will it hurt later? How obtrusive will it be? Will it ever come loose and cause problems? Will it be very noticeable? The women who cared for me before, during and after were all amazing. Eileen, the pre-op RN was hilarious and all we did was joke around. She was jealous of me as a PT, having had the experience as a student of dissecting a cadaver. All she got to do was a cat. She kept it's tail afterward and brought it to her roommate, who WAS a PT student. Coming from a family of nurses, I totally get their VERY offbeat sense of humor. The anesthesia MD and nurse were informative and patient. The OR team (5 of them, including the lone male in the bunch) were a fun group. It was obvious they enjoy what they do and knew each other well, but their focus was on me. We had a great time making fun of Trump's tweets. The biggest surprise to me though, was the physician's assistant who did the procedure. No idea her age, but she looked about 12. She was an excellent teacher to me, took her time, very professional, and I thought that if I were in a different time in life, I might like to have HER job!
I was so drugged up. I don't even remember having this picture taken. It really doesn't take much to snow me. I've never been a drinker or a smoker or anything like that, so when substances go in, they hit me good. For the port procedure, I got an anti anxiety med, and some heavy sedation. It's called "conscious sedation" because you aren't asleep, but you're loopy enough to not care what they are doing to you. I felt nothing other than pressure as she advanced the catheter under my skin, making a "tunnel" up to the vena cava vessel. I slept it off for a bit in the recovery room, where they fed me (starving! nothing to eat or drink after midnight, and it was now almost noon). Then it was off to the next phase of the day: bloodwork and infusion. Husband wheeled me over (I was unsteady on my feet from the sedation and it was a longish walk) and we got started. It took longer for the cocktail to come up from pharmacy this time, but that was ok because it gave Husband and me a chance to have more to eat and for the sedative to wear off. Not that it mattered! The benedryl put me right back to sleep. The rest of it is a blur, and I went to bed soon after getting home. I've slept most of today too. Sore at the port site, which I was told should go away after a couple of days, and unbearably itchy from the bandage. I can't wait till tomorrow to take it off!
Ok, so let's get to the wig. I'm "wigged out" thinking about it. Because it means I'll have no hair. It's constantly on my mind. When will it happen? How will it start? How long will it take? Should I just cut my hair off now and get it over with? Waiting for my hair to fall out, it's kind of like waiting for a newborn to crown. At some point, a bald head will emerge. But instead of preparing for a new baby and looking at baby books and going to Lamaze classes, I'm scanning youtube videos on how to artfully tie a scarf on my head and going to a wig fitter. Because I can't have a bare head during New England winter. Just, NO. I can't have a bare head, period. I'm a long hair gal. I haven't had a short haircut since I was 16 and had to cut it all off because of chlorine damage from swimming so much. It took what felt like forever to grow back, and I hated it. But at least I had hair.... Preparing for this is essential, both mentally and practically. The appointment with the stylist the other day was interesting. She had all kinds of wigs there to pick from. I'd looked a little bit online ahead of time to learn wig "lingo" and about quality differences. As it turned out, the first one one she put on me was the one I chose. But I couldn't miss my chance to try on other ones, we had a full hour! I saw myself in long black Elvira hair, in long pouffy newscaster hair, in short spiky silver hair, in a short brown bob, and in stick straight long blond. The one I chose looks the most like what I have now, and I felt the most like me in it. And maybe, just maybe, if I bump into someone I haven't seen lately, they'll just think I'm having a really good hair day.
The scarf tying videos have been fun to watch too. Who says you need to be African or Haitian or Hindu or any other ethnicity other than American to wear one? I can pull it off. And no doo-rag styles for me - if you see me wearing a scarf, it's gonna be fab. As my daughter would say, "Slay!" Hats? Sure, maybe sometimes. Had some fun a couple of weeks ago trying hats on, hats that I'd never in a million years wear, was just being silly. If I wear a hat, it's going to be a regular outdoor hat, because I'll wear it if I'm outdoors for awhile.
I've had so many opinions given to me on the subject of head coverings, all conflicting of course. "Don't wear a scarf, you'll look old." "Don't wear a wig, you'll look fake." - "Don't wear crazy hats PLEASE!" Reminds me of all the advice and opinions on baby names that people feel compelled to give. It's my head. I'll wear what I find to be comfortable. If someone doesn't like it, they can keep it to themselves, like what you do when the parents name the baby something YOU wouldn't choose, you say nothing or you lie and say how lovely a name it is once you meet that fully formed, out of the womb human. So whatever is on my head, when you see me, please lie to me and tell me it looks fine.
Other than Billy Joel, it's been an eventful week. I met the reconstructive surgeon who will put me back together after I say bye-bye to the boob. I went back to work (part time for now). I was accepted into the Livestrong Project at the YMCA. I had a wig fitting. And yesterday I had a port implanted, and had the second infusion. Lots to talk about.
I really liked the reconstructive surgeon, Matthew Carty at Brigham and Women's. He took his time with me, smiled a lot, was confident without being cocky, and honestly caring. I learned that there are many options available after mastectomy. You can sew it up and stay flat, or you could get re-made with a gel or saline implant, or you could get a reconstruction with tissue taken from your own body. A one-sided mastectomy with staying flat doesn't appeal to my physical therapist mind that is trained to strive for functional symmetry. I thought over time that the weight imbalance would mess with my already messed up neck (fused at C5-6). With an implant, I have a huge fear of it breaking down and making me ill in other ways. Plus, the long term maintenance was a huge turn off to me . Did you know that an implant has to be replaced every 10 years or so, and checked yearly? No thank you. After much research and weighing pros and cons of all of them, I gravitated toward using my own tissue. But that wasn't a slam dunk. First the reconstructive surgeon had to make sure I was fat enough. Can you imagine? I defiantly showed him the growing fat stores in my lower abdomen and after some measurements and pre-op pictures, his conclusion was that yes, I am indeed fat enough. Never been so happy to to hear that! But the key for success in this procedure is the vessels, and for him to be sure it would be the right thing for me, he ordered a CT scan, to make sure they were anatomically advantaged for what he needs to do. And thankfully, they are. I'll be having what is called DIEP flap, which according to the definition, is when the deep inferior epigastric perforator vessels (DIEP), as well as the skin and fat connected to them, are removed from the lower abdomen and transferred to the chest to reconstruct a breast after mastectomy, without the sacrifice of any of the lower abdominal muscles. How brilliant! The surgery will occur sometime in the first week in May, and then I'll be very restricted for 12 solid weeks in order to heal properly. No working, no housework, no lifting, no exercising, absolutely no use of core muscles. I'll be wearing a binder around my abdomen until August. REALLY looking forward to August!
Having learned about the rigor of what I'll be subjected to for surgery, and the long recovery, it's not lost on me that I need to be in the best shape possible going into it. But I don't want to over do it either, during these 12 weeks of chemotherapy that will make me tired and lower my resistance to illness. I found the perfect compromise. I could make up my own program, I certainly know how, but there's something motivating about being in a group setting. I discovered The Livestrong Project. It is a 12 week program at certain YMCA's that meets twice a week for group exercise for people who have or have had cancer. Coincidentally the YMCA less than 2 miles from me offers it, and I was waitlisted for about 2 days before they let me know I could join their new group next week! The instructors are specially trained with management of exercisers with cancer, and I'll get to meet other people in my situation who are exercise minded. It's limited to 12 people, which is small enough to be friendly and big enough to be fun. I found out about it on a cancer support website. It's funded by a grant from a pharmaceutical company, and grant = free, so very affordable. And what perfect timing. Need to get those abs as strong as possible since they'll be on a 3 month siesta starting in May.
Yesterday was a very long day as I had a port implanted in the morning, and my second infusion in the afternoon. I can't say enough great things about the care I have been receiving. I was a bit anxious to have the port put in - will it hurt during the procedure? How long will it hurt later? How obtrusive will it be? Will it ever come loose and cause problems? Will it be very noticeable? The women who cared for me before, during and after were all amazing. Eileen, the pre-op RN was hilarious and all we did was joke around. She was jealous of me as a PT, having had the experience as a student of dissecting a cadaver. All she got to do was a cat. She kept it's tail afterward and brought it to her roommate, who WAS a PT student. Coming from a family of nurses, I totally get their VERY offbeat sense of humor. The anesthesia MD and nurse were informative and patient. The OR team (5 of them, including the lone male in the bunch) were a fun group. It was obvious they enjoy what they do and knew each other well, but their focus was on me. We had a great time making fun of Trump's tweets. The biggest surprise to me though, was the physician's assistant who did the procedure. No idea her age, but she looked about 12. She was an excellent teacher to me, took her time, very professional, and I thought that if I were in a different time in life, I might like to have HER job!
I was so drugged up. I don't even remember having this picture taken. It really doesn't take much to snow me. I've never been a drinker or a smoker or anything like that, so when substances go in, they hit me good. For the port procedure, I got an anti anxiety med, and some heavy sedation. It's called "conscious sedation" because you aren't asleep, but you're loopy enough to not care what they are doing to you. I felt nothing other than pressure as she advanced the catheter under my skin, making a "tunnel" up to the vena cava vessel. I slept it off for a bit in the recovery room, where they fed me (starving! nothing to eat or drink after midnight, and it was now almost noon). Then it was off to the next phase of the day: bloodwork and infusion. Husband wheeled me over (I was unsteady on my feet from the sedation and it was a longish walk) and we got started. It took longer for the cocktail to come up from pharmacy this time, but that was ok because it gave Husband and me a chance to have more to eat and for the sedative to wear off. Not that it mattered! The benedryl put me right back to sleep. The rest of it is a blur, and I went to bed soon after getting home. I've slept most of today too. Sore at the port site, which I was told should go away after a couple of days, and unbearably itchy from the bandage. I can't wait till tomorrow to take it off!
Ok, so let's get to the wig. I'm "wigged out" thinking about it. Because it means I'll have no hair. It's constantly on my mind. When will it happen? How will it start? How long will it take? Should I just cut my hair off now and get it over with? Waiting for my hair to fall out, it's kind of like waiting for a newborn to crown. At some point, a bald head will emerge. But instead of preparing for a new baby and looking at baby books and going to Lamaze classes, I'm scanning youtube videos on how to artfully tie a scarf on my head and going to a wig fitter. Because I can't have a bare head during New England winter. Just, NO. I can't have a bare head, period. I'm a long hair gal. I haven't had a short haircut since I was 16 and had to cut it all off because of chlorine damage from swimming so much. It took what felt like forever to grow back, and I hated it. But at least I had hair.... Preparing for this is essential, both mentally and practically. The appointment with the stylist the other day was interesting. She had all kinds of wigs there to pick from. I'd looked a little bit online ahead of time to learn wig "lingo" and about quality differences. As it turned out, the first one one she put on me was the one I chose. But I couldn't miss my chance to try on other ones, we had a full hour! I saw myself in long black Elvira hair, in long pouffy newscaster hair, in short spiky silver hair, in a short brown bob, and in stick straight long blond. The one I chose looks the most like what I have now, and I felt the most like me in it. And maybe, just maybe, if I bump into someone I haven't seen lately, they'll just think I'm having a really good hair day.
The scarf tying videos have been fun to watch too. Who says you need to be African or Haitian or Hindu or any other ethnicity other than American to wear one? I can pull it off. And no doo-rag styles for me - if you see me wearing a scarf, it's gonna be fab. As my daughter would say, "Slay!" Hats? Sure, maybe sometimes. Had some fun a couple of weeks ago trying hats on, hats that I'd never in a million years wear, was just being silly. If I wear a hat, it's going to be a regular outdoor hat, because I'll wear it if I'm outdoors for awhile.
I've had so many opinions given to me on the subject of head coverings, all conflicting of course. "Don't wear a scarf, you'll look old." "Don't wear a wig, you'll look fake." - "Don't wear crazy hats PLEASE!" Reminds me of all the advice and opinions on baby names that people feel compelled to give. It's my head. I'll wear what I find to be comfortable. If someone doesn't like it, they can keep it to themselves, like what you do when the parents name the baby something YOU wouldn't choose, you say nothing or you lie and say how lovely a name it is once you meet that fully formed, out of the womb human. So whatever is on my head, when you see me, please lie to me and tell me it looks fine.
Thinking about you Laura! You are amazing!!!
ReplyDeleteAnd so are you, little Miss Comedy Show! Thanks for the laughing fits you sent me into last night!
ReplyDeleteOh yes we all need a good comedy show! Please - oh please watch the man I revere as a comic genius! Give him a chance, it took me a little while to warm up to him. In the meanwhile you will be stuck with me!
ReplyDelete