Yesterday was the two week checkup with my surgeon and my oncologist. As usual, Mom came with me.
First the surgeon. She looked at my incision site on my chest and agreed it looked ugly, but said even though it wasn't healing "pretty", it was healing and it wasn't infected or anything. (I think it looks like a rancid piece of meat with all the yellow drainage). She says this is normal healing fluid that the body provides and is nothing to worry about. She could see where the incision has pulled apart a bit and she was a little suprised that they used DermaBond instead of stitches for the top layer. She said she could go back in and stitch the top layer together if I wanted a prettier scar or if it was really bothering me. Basically it's going to heal either way, it's just up to me how I want to proceed. I asked her what she's do herself and she said she'd probably just leave it alone because I have bigger things to worry about.
Grrrrrreat.
So the pathology results, which we knew, were that my chest wall incision was clear of any cancer, all the margins were clean. But the lymph node she removed from under my arm did have cancer. That automatically moves my stage up from a II to a III, and makes things way more serious. You see, Melanoma likes to take road trips, and the lymphatic system is the superhighway of the body. Finding Melanoma at a rest stop means there's a chance it could have gone sightseeing. We're hoping it hasn't started it's road trip yet and was still busy getting snacks and packing the car. My surgeon was discussing what to do next, and she said there are two schools of thought; the first one thinks that if you find cancer in one lymph node, you should be safe and take the rest. Better safe than sorry. The other school of thought says wait a second, we don't have concrete proof that taking all the lymph nodes will add to the patient's survival. That's the word she used, too, "survival". I saw the look in Mom's eyes when that word was uttered and it was pure terror. Mom was under the impression that we were still in the diagnostic phase and that things weren't that serious yet. Suddenly they are talking about survival rates and things like that, meaning that this is no longer just a little thing to be taken care of, this is life or death.
After discussing it, we decided to go with the first school of thought and yank the remaining lymph nodes, just to be safe.
Before that's done, I'll be having a PET/CT scan next Tuesday. That will tell us if Melanoma and his friends have already started their road trip and visited other sites in my body and settled there. The PET/CT scan entails me getting an injection of radioactive glucose, then I have to sit in a dark room without moving for 30 mins or so. I also have to drink two bottles of some nasty stuff. Then I will have the scan, lying again motionless for about 45 mins. Fun, annoying, but not painful. It's the little things I'm greatful for.
The surgery will be the following day, next Wednesday. The current incision under my arm has healed amazingly. It's so small it looks like a cat scratch. As the surgeon explained, this next one will be quite a bit bigger, in the shape of an "S" and go from the top of my armpit down and around the side towards my back. I will stay overnight in the hospital, and I will have a drain installed. The drain will stay in place for 1-2 weeks depending. I'm scared of this surgery because of the complications. On the inside of my upper arm there is a risk that the nerves will not heal and I may never get the feeling back. There is also a risk of lymphadema which is my real fear, that fluids will build up and my arm will swell to several times it's own size. If that happens I will have to wear a compression sleeve on my arm, and I may have to wear it for the rest of my life. I told her I'm an artist, will this affect my hand movement, and she said no, so that's a good thing. Apparently the day they release me from the hospital, they will send in a physical therapist to talk to me about exercises for my arm to keep the lymphadema at bay. Again, no promise that this will improve my survival odds, but better safe than sorry.
As soon as she got done explaining all this, I think my mind just imploded a bit and I started to cry. It was alot to take in. Mom started to cry too. There are alot of things I can handle, but seeing my mom cry, especially because of worry over me, is something that breaks my heart. Not to mention my surgery will be the day before her birthday. She's planning on staying the night in the hospital with me and bringing me home the next day, but I feel guilty. Happy Birthday to her. The next day, Friday, my neice graduates from nursing school, so I won't be able to go to that. Deni is going to stay with me so Mom can go instead. And that's another thing. The first surgery was hard enough on Deni and I because I stayed at mom's so she could take care of me. Deni and I were both miserable being apart. Now we're going to have to go through it all again. At least this time we've discovered Skype video chat.
So after the surgeon slammed us both with the emotional hammer, we went to scheduling to schedule the surgery, then over to the cancer pavilion. There's a Subway there so we had lunch and tried to calm down a bit. I went over to Nuclear Medicine to schedule my PET scan but they were out to lunch and by that time it was time to meet with my Oncologist. There really wasn't much to discuss with him as far as treatment. He wants the results of the PET scan too, before we decide on a strategy. He did mention Interferon, and I said "I thought you didn't like Interferon" at which point he said well, I think we have other options available before we have to think seriously about that one. Which is good because having the flu for a year... yeah, not so much on my "to do" list. I'd much rather have radiation. He did mention Yervoy which is a new drug for Melanoma that shows promise, but it's only being used for advanced stages of Melanoma, so if he puts me on that, then I'll know I'm probably a stage IV at that point.
After we met with him, it was back down to nuclear medicine to schedule my PET scan. I guess there was a red flag somewhere in the computer system because I had to go see a financial person who asked me a bunch of financial questions. I told her I'd already gone through this two weeks ago with someone else and she acted like it was the most important thing in the world that I get financially "Approved" for the PET scan. She was so uncaring and also had me down as "Indigent" because I have no insurance. I couldn't help it, my eyes teared up, I had just had enough. I felt like telling her "Lady, do you have any idea what I'm going through? Do you know how little I give a fuck about your stupid paperwork?". I mean really, I'm already in for over $10,000. To me, they're just numbers on a screen, or a paper. I'm more concerned with SURVIVING right now. In the immortal words of Ripley in Aliens, "They can BILL me!!"
I've been going to the Melanoma Research Foundation boards and talk to other people who've been through the same thing and they're so great. They tell me exactly what to expect, how much it could hurt, etc. And there are many many stage IV patients that have been stable for years now, so I'm trying to think positively. I have people I don't even know praying for me, and the outpouring of love that I've gotten is just overwhelming. I always figured if anything happened to me it would only upset my family, but there are people from all over thinking of me and it brings me to tears.
Yesterday was a day for tears...and xanax. It was a day to buy a chocolate silk pie and eat some before dinner (I did), and it was a day to have steaks for dinner, damn the cost. (Again, I did). Money? Who cares. It's just paper, or coins, or ticks on a credit card. So yesterday I was beaten down and curled up in bed. Today I'm up and taking a deep breath and gathering my strength for the next battle ahead. I'm not there yet, but I will be by next Wednesday.
In the meantime, nothing is allowed to upset me or stress me out. Only happy things to exist around me. So let it be said... so let it be done.
First the surgeon. She looked at my incision site on my chest and agreed it looked ugly, but said even though it wasn't healing "pretty", it was healing and it wasn't infected or anything. (I think it looks like a rancid piece of meat with all the yellow drainage). She says this is normal healing fluid that the body provides and is nothing to worry about. She could see where the incision has pulled apart a bit and she was a little suprised that they used DermaBond instead of stitches for the top layer. She said she could go back in and stitch the top layer together if I wanted a prettier scar or if it was really bothering me. Basically it's going to heal either way, it's just up to me how I want to proceed. I asked her what she's do herself and she said she'd probably just leave it alone because I have bigger things to worry about.
Grrrrrreat.
So the pathology results, which we knew, were that my chest wall incision was clear of any cancer, all the margins were clean. But the lymph node she removed from under my arm did have cancer. That automatically moves my stage up from a II to a III, and makes things way more serious. You see, Melanoma likes to take road trips, and the lymphatic system is the superhighway of the body. Finding Melanoma at a rest stop means there's a chance it could have gone sightseeing. We're hoping it hasn't started it's road trip yet and was still busy getting snacks and packing the car. My surgeon was discussing what to do next, and she said there are two schools of thought; the first one thinks that if you find cancer in one lymph node, you should be safe and take the rest. Better safe than sorry. The other school of thought says wait a second, we don't have concrete proof that taking all the lymph nodes will add to the patient's survival. That's the word she used, too, "survival". I saw the look in Mom's eyes when that word was uttered and it was pure terror. Mom was under the impression that we were still in the diagnostic phase and that things weren't that serious yet. Suddenly they are talking about survival rates and things like that, meaning that this is no longer just a little thing to be taken care of, this is life or death.
After discussing it, we decided to go with the first school of thought and yank the remaining lymph nodes, just to be safe.
Before that's done, I'll be having a PET/CT scan next Tuesday. That will tell us if Melanoma and his friends have already started their road trip and visited other sites in my body and settled there. The PET/CT scan entails me getting an injection of radioactive glucose, then I have to sit in a dark room without moving for 30 mins or so. I also have to drink two bottles of some nasty stuff. Then I will have the scan, lying again motionless for about 45 mins. Fun, annoying, but not painful. It's the little things I'm greatful for.
The surgery will be the following day, next Wednesday. The current incision under my arm has healed amazingly. It's so small it looks like a cat scratch. As the surgeon explained, this next one will be quite a bit bigger, in the shape of an "S" and go from the top of my armpit down and around the side towards my back. I will stay overnight in the hospital, and I will have a drain installed. The drain will stay in place for 1-2 weeks depending. I'm scared of this surgery because of the complications. On the inside of my upper arm there is a risk that the nerves will not heal and I may never get the feeling back. There is also a risk of lymphadema which is my real fear, that fluids will build up and my arm will swell to several times it's own size. If that happens I will have to wear a compression sleeve on my arm, and I may have to wear it for the rest of my life. I told her I'm an artist, will this affect my hand movement, and she said no, so that's a good thing. Apparently the day they release me from the hospital, they will send in a physical therapist to talk to me about exercises for my arm to keep the lymphadema at bay. Again, no promise that this will improve my survival odds, but better safe than sorry.
As soon as she got done explaining all this, I think my mind just imploded a bit and I started to cry. It was alot to take in. Mom started to cry too. There are alot of things I can handle, but seeing my mom cry, especially because of worry over me, is something that breaks my heart. Not to mention my surgery will be the day before her birthday. She's planning on staying the night in the hospital with me and bringing me home the next day, but I feel guilty. Happy Birthday to her. The next day, Friday, my neice graduates from nursing school, so I won't be able to go to that. Deni is going to stay with me so Mom can go instead. And that's another thing. The first surgery was hard enough on Deni and I because I stayed at mom's so she could take care of me. Deni and I were both miserable being apart. Now we're going to have to go through it all again. At least this time we've discovered Skype video chat.
So after the surgeon slammed us both with the emotional hammer, we went to scheduling to schedule the surgery, then over to the cancer pavilion. There's a Subway there so we had lunch and tried to calm down a bit. I went over to Nuclear Medicine to schedule my PET scan but they were out to lunch and by that time it was time to meet with my Oncologist. There really wasn't much to discuss with him as far as treatment. He wants the results of the PET scan too, before we decide on a strategy. He did mention Interferon, and I said "I thought you didn't like Interferon" at which point he said well, I think we have other options available before we have to think seriously about that one. Which is good because having the flu for a year... yeah, not so much on my "to do" list. I'd much rather have radiation. He did mention Yervoy which is a new drug for Melanoma that shows promise, but it's only being used for advanced stages of Melanoma, so if he puts me on that, then I'll know I'm probably a stage IV at that point.
After we met with him, it was back down to nuclear medicine to schedule my PET scan. I guess there was a red flag somewhere in the computer system because I had to go see a financial person who asked me a bunch of financial questions. I told her I'd already gone through this two weeks ago with someone else and she acted like it was the most important thing in the world that I get financially "Approved" for the PET scan. She was so uncaring and also had me down as "Indigent" because I have no insurance. I couldn't help it, my eyes teared up, I had just had enough. I felt like telling her "Lady, do you have any idea what I'm going through? Do you know how little I give a fuck about your stupid paperwork?". I mean really, I'm already in for over $10,000. To me, they're just numbers on a screen, or a paper. I'm more concerned with SURVIVING right now. In the immortal words of Ripley in Aliens, "They can BILL me!!"
I've been going to the Melanoma Research Foundation boards and talk to other people who've been through the same thing and they're so great. They tell me exactly what to expect, how much it could hurt, etc. And there are many many stage IV patients that have been stable for years now, so I'm trying to think positively. I have people I don't even know praying for me, and the outpouring of love that I've gotten is just overwhelming. I always figured if anything happened to me it would only upset my family, but there are people from all over thinking of me and it brings me to tears.
Yesterday was a day for tears...and xanax. It was a day to buy a chocolate silk pie and eat some before dinner (I did), and it was a day to have steaks for dinner, damn the cost. (Again, I did). Money? Who cares. It's just paper, or coins, or ticks on a credit card. So yesterday I was beaten down and curled up in bed. Today I'm up and taking a deep breath and gathering my strength for the next battle ahead. I'm not there yet, but I will be by next Wednesday.
In the meantime, nothing is allowed to upset me or stress me out. Only happy things to exist around me. So let it be said... so let it be done.
No comments:
Post a Comment