Well, according to the Ironwood peeps, I only have one more session! I was originally scheduled for 36 treatments, but somewhere along the line that got changed to 35, so today was my second to last treatment. Bad news is I can't celebrate properly! Normally such good news requires a trip to a nice restaurant for some great food, but that's not in the cards. No big deal. Soon enough I'll be able to chow down proper-like.
The last couple of days have been rough. Very tired, very sore. I actually had to crack out the morphine a couple of times yesterday. At least the nausea/heartburn went away, for the most part. Once I'm done with my treatments though, it's going to be about two weeks and then I should be working back to normal. Well, the "new normal" as they say. Nothing is really going to be the same as it was, but that's ok. I'm hoping that my brilliant healing powers will even bring back my sense of taste sooner than expected.
Something came up the other day and I thought I'd address it here. My daughter asked me if I felt any different, felt any of the effects right after the radiation session. The answer is no. You don't feel the radiation at all. It's like getting an x-ray. You also don't really feel any of the effects later. They just sort of creep up on you and are just 'there'. Which is why it's difficult to discern which treatment is causing the side effects. I have to rely on what I've read and what the doctors tell me to determine which is causing what issue, the chemo or the radiation, and often I'm surprised to find out it wasn't the way I thought it was. The taste bud issues, I thought, were the result of the radiation passing through my tongue and killing my taste buds, but apparently it's the chemo killing them off. Which also makes it strange that I still have a great sense of smell. I would have though that since the two were kind of linked in the way the brain works, that the two would be somewhat equally affected by the chemo. Apparently not.
Welp, this time tomorrow there's going to be a party in my pants!
Showing posts with label squamous cell carcinoma. Show all posts
Showing posts with label squamous cell carcinoma. Show all posts
Tuesday, August 16, 2011
Friday, August 05, 2011
Surgery
I've been thinking about this lately because I've been writing about how my doctors, all three of them, have told me that the side effects from the radiation and chemotherapy are worse than the surgery. I've said a number of times that, so far at least, this hasn't been the case for me. I don't know whether this is because I have a good healing profile and have yet to experience real nausea from the chemo or very bad burns from the radiation. The effects do seem to be catching up on me a little but they're still not as bad as the surgery recovery. It's obvious that I'm not enjoying this at all and it definitely is difficult.
The reason I've been thinking of all of this is because I don't want to give people the wrong impression. I definitely had a very difficult time in the hospital, no doubt. To be honest, it's the only time during all of this that I've been brought to tears from the pain and trauma. I know that I was pretty raw emotionally as well as the obvious physical issues, but it was easily the most difficult thing I've ever had to go through. That being said, I'm still glad I had the surgery. I'm not sure not having surgery was an option for me, certainly not if I wanted to get through this. My surgical oncologist gave me the option of going the 'just chemo and radiation' route, but I believe that he didn't believe it was the best option. Stage 4 is only 1 step down from 'get your affairs in order'. I also know from my research that if I had gone that route I would be enduring a much more intense series of treatments and for far longer with likely more serious and permanent side effects. The only plus side seemed to be no scars.
I guess what I'm saying in way too many words is: I'd do it the same again. I don't want to inadvertently dissuade someone who reads this from going through surgery. Even though I felt differently in the hospital, and now I'm looking back through the long lens of memory, which softens the experience a bit, I'd still do it the same. I'd much rather have the evil crap cut out of me as much as possible than have even higher doses of possibly more cancer-causing radiation and larger doses of toxic chemical dripped right into my bloodstream. I think my chances are much better after having the surgery and I believe it was the right way to go.
The reason I've been thinking of all of this is because I don't want to give people the wrong impression. I definitely had a very difficult time in the hospital, no doubt. To be honest, it's the only time during all of this that I've been brought to tears from the pain and trauma. I know that I was pretty raw emotionally as well as the obvious physical issues, but it was easily the most difficult thing I've ever had to go through. That being said, I'm still glad I had the surgery. I'm not sure not having surgery was an option for me, certainly not if I wanted to get through this. My surgical oncologist gave me the option of going the 'just chemo and radiation' route, but I believe that he didn't believe it was the best option. Stage 4 is only 1 step down from 'get your affairs in order'. I also know from my research that if I had gone that route I would be enduring a much more intense series of treatments and for far longer with likely more serious and permanent side effects. The only plus side seemed to be no scars.
I guess what I'm saying in way too many words is: I'd do it the same again. I don't want to inadvertently dissuade someone who reads this from going through surgery. Even though I felt differently in the hospital, and now I'm looking back through the long lens of memory, which softens the experience a bit, I'd still do it the same. I'd much rather have the evil crap cut out of me as much as possible than have even higher doses of possibly more cancer-causing radiation and larger doses of toxic chemical dripped right into my bloodstream. I think my chances are much better after having the surgery and I believe it was the right way to go.
Thursday, May 05, 2011
Pre-Op Visit
It's about a week out I guess and the scheduler, Sarah, called to set up a pre-op appt (this happened a couple of days ago), so here I am again, in the doctor's office and of course there's a problem with AHCCCS and my other insurance and the bills and I think I'm going to die of stress related brain embolisms before I can be cured of cancer. Apparently since I don't have a Primary Care Physician I can't use this doctor with AHCCCS because I didn't get a referral from my Primary Care Physician that I don't have. That would be fraud, ya know, to go to a Specialist without getting a referral from a Primary Care Physician. I guess Tank forgot to port-load that program for me cuz I didn't get that training. All I know is I've been coming here for two months and now they tell me that the thing I told them day one (no primary physician) is now going to keep me from getting the surgery. Oh but wait, I have other insurance. Yes, yes I have Pizza Hut's meek little tic-tac of a health plan that seems poised to save my life, literally, simply by the fact that they can be considered my Primary Health Insurance Plan and the ADCCCS becomes my Secondary Insurance Plan, thus solving the dilemma of who referred me to Dr. Rothman. I think. No, as Kevin would say, "everyone's God willing". We figure it out by saying, "here, call this number tomorrow."
So it's not long of a wait and Marsha sits me in the scary dental chair in room 4. Rothman shows up maybe 5 minutes later, smiles and shakes my hand warmly, which is so not like his previous meetings with me.
So he pretty much starts out by saying that this should go about as smoothly as my biopsy, as far as I was concerned. I'd meet him for a few minutes about a half hour before surgery. I'd meet the anesthesiologist. The nurses would give me an IV and ask me a bunch of questions, then they'd wheel me out and down the hall and the next thing I'll know is I'm waking up in ICU. I won't have any tubes or hoses in my nose or mouth. I will have a breathing tube installed, along with a feeding tube, as I won't be able to swallow. I imagine the breathing tube is for the swelling in my throat from the surgery which probably wouldn't allow me to breathe normally.
This all takes place on my right side, left if it's your point of view. He explained again how normally he would go in through the mouth with robotic surgical tools, but my kind of tumor prevents that. So he has to take apart my jaw on that side, which will be repaired with titanium. He indicated the chin area when speaking so I would think that's where the bone is broken so that half of my jaw can just be kinda moved out of the way. This also includes slitting me from collarbone to above my ear and probably up my chin to, and maybe including, my lower lip. It's called Radical Neck Dissection. Do not google that.
Once he can get at the tumor from all sides he'll remove it, the idea of course is he'll remove all of it. This will leave a tumor shaped hole in my face which must be filled. Tissue and muscle will be taken from my chest, which I described before, but what I learned today makes it cooler. The tissue and muscle will be moved under my skin. They kinda snake it up under my skin, past my shoulder and up into my neck and jaw area, with all the original attendant nerves and blood vessels still intact, so that it is my own live tissue being used to rebuild my neck. If they had gone with the other procedure, the one I really wanted, they would have had to painstakingly rebuild the circulatory network, I guess by matching veins with veins and arteries with arteries and nerves with nerves and so on. If he'd explained that the first time I totally would have gone with the chest method.
Then it's sewed back up and into ICU. Day 2 they'll get me out of bed and walking around. I told him all I cared about was being able to pee standing up. None of those bedpans. He said I'll spend 7 days in the hospital. Day 3 they'll probably start me on physical therapy for my chest, shoulder and neck.
I ask him if I should start looking for an oncologist and he says no, he's an oncologist. This is all he does. When the time comes, if we need to add a little radiation or chemo to the plan, he can take care of all of that. Arranging for a Radiologist or a Chemotherapist(?) He's said it like that a number of times; "If we need" radiation or chemo after surgery. It's encouraging. He tells me to call him if I have any questions, that he will call me back if he's not able to talk at the time and I believe him. Very reassuring. In fact, the whole visit was more encouraging than any previous one. More than all rolled together. And I still could barely keep from falling apart when I left. I think it's the holding it all in while we're calmly talking about breaking my jaw and swinging it out of the way like a gate on a fractured hinge, right after my neck has been cut open like a frog tied down with pins, so they can scoop out a golf ball sized piece of my neck and then pull some chest meat up under my skin to fill in the hole.
Sat in the parking garage and called dad to tell him about the meeting. Find out that my kid is now employed. Woot!
I forgot to ask about the blood stuff - my mom and dad want to try to donate blood if it's needed, and Kaia's friend Alix did too, but I forgot to even ask if it's even an option, if it's needed.
Overall I feel much better emotionally than I have for the last few days. Sorry if I've been grumpier than usual.
Oh yeah, sorry Kevin, I shoulda told you that I was going to get some awesome food. It was kinda spontaneous. I couldn't really help myself, Mikado was on the way home and well, tuna tataki! I'm not going to get my hopes up too high, but if I don't have to have radiation, then my fear of losing my sense of taste might not even happen.
So it's not long of a wait and Marsha sits me in the scary dental chair in room 4. Rothman shows up maybe 5 minutes later, smiles and shakes my hand warmly, which is so not like his previous meetings with me.
So he pretty much starts out by saying that this should go about as smoothly as my biopsy, as far as I was concerned. I'd meet him for a few minutes about a half hour before surgery. I'd meet the anesthesiologist. The nurses would give me an IV and ask me a bunch of questions, then they'd wheel me out and down the hall and the next thing I'll know is I'm waking up in ICU. I won't have any tubes or hoses in my nose or mouth. I will have a breathing tube installed, along with a feeding tube, as I won't be able to swallow. I imagine the breathing tube is for the swelling in my throat from the surgery which probably wouldn't allow me to breathe normally.
This all takes place on my right side, left if it's your point of view. He explained again how normally he would go in through the mouth with robotic surgical tools, but my kind of tumor prevents that. So he has to take apart my jaw on that side, which will be repaired with titanium. He indicated the chin area when speaking so I would think that's where the bone is broken so that half of my jaw can just be kinda moved out of the way. This also includes slitting me from collarbone to above my ear and probably up my chin to, and maybe including, my lower lip. It's called Radical Neck Dissection. Do not google that.
Once he can get at the tumor from all sides he'll remove it, the idea of course is he'll remove all of it. This will leave a tumor shaped hole in my face which must be filled. Tissue and muscle will be taken from my chest, which I described before, but what I learned today makes it cooler. The tissue and muscle will be moved under my skin. They kinda snake it up under my skin, past my shoulder and up into my neck and jaw area, with all the original attendant nerves and blood vessels still intact, so that it is my own live tissue being used to rebuild my neck. If they had gone with the other procedure, the one I really wanted, they would have had to painstakingly rebuild the circulatory network, I guess by matching veins with veins and arteries with arteries and nerves with nerves and so on. If he'd explained that the first time I totally would have gone with the chest method.
Then it's sewed back up and into ICU. Day 2 they'll get me out of bed and walking around. I told him all I cared about was being able to pee standing up. None of those bedpans. He said I'll spend 7 days in the hospital. Day 3 they'll probably start me on physical therapy for my chest, shoulder and neck.
I ask him if I should start looking for an oncologist and he says no, he's an oncologist. This is all he does. When the time comes, if we need to add a little radiation or chemo to the plan, he can take care of all of that. Arranging for a Radiologist or a Chemotherapist(?) He's said it like that a number of times; "If we need" radiation or chemo after surgery. It's encouraging. He tells me to call him if I have any questions, that he will call me back if he's not able to talk at the time and I believe him. Very reassuring. In fact, the whole visit was more encouraging than any previous one. More than all rolled together. And I still could barely keep from falling apart when I left. I think it's the holding it all in while we're calmly talking about breaking my jaw and swinging it out of the way like a gate on a fractured hinge, right after my neck has been cut open like a frog tied down with pins, so they can scoop out a golf ball sized piece of my neck and then pull some chest meat up under my skin to fill in the hole.
Sat in the parking garage and called dad to tell him about the meeting. Find out that my kid is now employed. Woot!
I forgot to ask about the blood stuff - my mom and dad want to try to donate blood if it's needed, and Kaia's friend Alix did too, but I forgot to even ask if it's even an option, if it's needed.
Overall I feel much better emotionally than I have for the last few days. Sorry if I've been grumpier than usual.
Oh yeah, sorry Kevin, I shoulda told you that I was going to get some awesome food. It was kinda spontaneous. I couldn't really help myself, Mikado was on the way home and well, tuna tataki! I'm not going to get my hopes up too high, but if I don't have to have radiation, then my fear of losing my sense of taste might not even happen.
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