They didn't find cancer anywhere else. Great news! The Dr. is recommending just watch and wait. He will take my case to 'the board' with the oncologists and other melanoma surgeons and let me know Monday what they say.
I know it is not likely this thing is cured by surgery.
So I go over the What Ifs all the time. Most of them depressing. Everything that comes along with What If I die.
But I keep coming back to What If I live? What If I feel good this summer? What if I don't have cancer? What If I get to go everywhere I always wanted to go? What if life just gets better? What If I get to be anything I choose to be? What if I get to send my kids to college? What If I get the be an old lady? What If I live so long spring gets old?
Are those the possibilities everyone wakes up with? Lucky everyone! Lucky me that I even have a chance at that. Wow.
Wednesday, April 6, 2011
Tuesday, April 5, 2011
i've come to my senses
Turns out I don't even need Lortab (so far). I am walking around just fine. They cut a nerve during surgery 4 years ago, and I haven't had feeling in the thigh since, so I'm sure that's helping. And they didn't mess with a muscle (they had to move one last time to cover up my artery). Anyhow, I am feeling great.
The Dr. said he had a pathologist looking at the tissue he was cutting out to make sure they got it all, and assured us we had clear margins. He said the tumor was hard to find, even after he had taken it out in a large chunk. I was pretty happy about that.
As he was cutting on some of the old scar tissue, he could tell the scar tissue wasn't getting any blood supply, so he went ahead and cut out the entire foot-long scar above the tumors. Just thought I would share some of these lovely images. And all my good news. Thanks for your thoughts and prayers, they seem to have really paid off. I am in great spirits.
Tomorrow afternoon we will see what the pathologist had to say. My guess is that if they only see cancer in the tumors, the Dr. will say we just do what they call 'watch and wait.' Scan every 3 months and see if I am a lucky one who has it taken care of by surgery. If it is in the nodes or leaking out of the tumors they might recommend some other type of treatment. I am finally informed enough (3 hours a day on the computer researching melanoma) to think that maybe watch and wait would be okay. It is not my first choice, but that is the standard of care. The problem I'm having is that the standard of care is not having great success. They think wait to use the toxic treatments until I need them (stage IV). And hope I don't need them.
The Dr. said he had a pathologist looking at the tissue he was cutting out to make sure they got it all, and assured us we had clear margins. He said the tumor was hard to find, even after he had taken it out in a large chunk. I was pretty happy about that.
As he was cutting on some of the old scar tissue, he could tell the scar tissue wasn't getting any blood supply, so he went ahead and cut out the entire foot-long scar above the tumors. Just thought I would share some of these lovely images. And all my good news. Thanks for your thoughts and prayers, they seem to have really paid off. I am in great spirits.
Tomorrow afternoon we will see what the pathologist had to say. My guess is that if they only see cancer in the tumors, the Dr. will say we just do what they call 'watch and wait.' Scan every 3 months and see if I am a lucky one who has it taken care of by surgery. If it is in the nodes or leaking out of the tumors they might recommend some other type of treatment. I am finally informed enough (3 hours a day on the computer researching melanoma) to think that maybe watch and wait would be okay. It is not my first choice, but that is the standard of care. The problem I'm having is that the standard of care is not having great success. They think wait to use the toxic treatments until I need them (stage IV). And hope I don't need them.
Post-op
I am out of surgery. The incision was bigger than planned. I came home with a drain in my leg :(
I will go see the doctor tomorrow and should have results then.
I am grounded from blogging on loritab.
I will go see the doctor tomorrow and should have results then.
I am grounded from blogging on loritab.
Sunday, April 3, 2011
back to the drawing board
Kind of left this on a bad note. Things got better, and I had a lovely weekend. Lots of nerves today while waiting for this afternoon's randomization. Nurse just called. I got put on the GMCSF arm (the one I didn't want)! A bit bummed, I really thought I would be doing the vaccine. Only 1/3 of the people get the GMCSF, but I'm good at beating odds. I knew I would drop out the trial if this was the arm I was put on.
So. Surgery on Tuesday. Stoked about that. Now to find something I qualify for after to take care of any cancer cells floating around....
So. Surgery on Tuesday. Stoked about that. Now to find something I qualify for after to take care of any cancer cells floating around....
Thursday, March 31, 2011
my better (or worse) half
Thanks to Josh for saving the day! The only person I wanted to talk to yesterday came home early and dropped by the flower shop on his way. The lady asked what it was for as she tried to help him decide what to put in the boquet. "Is it for a birthday?" "No..." "Anniversary?" "Nope..." Awkward silence. "Just a bad day, I guess." "Oh, I get it." She probably thought she was making up something for an unfaithful husband as he tries to make amends.
Josh won't really let me talk to people about how he is doing, so I thought I would write it up for all our friends and any random reader. Kidding. I won't give details. But we have been talking about how this has worked for us this last month. If I am down he automatically kicks in to hopeful/helpful/happy mode, and if he's down I have to be the opposite too. Moods change daily and even hourly, but one of us is usually okay. Lately he has been the okay one (as my last post might suggest).
At first, I was all hope and faith, while he had a harder time. This surprised me, as last diagnosis he was never doubting.
When he was so sad I tried to figure it out. "What is it that is bothering you? Is it the financial aspect of it all? Is it that I will gone for treatments, or sick all the time, and you will have to take care of everything like last time? Is it the possibility of being a single dad? Raising these kids by yourself? Alone every night when the kids are asleep by 9?"
The perfect answer? "No. I'm not worried about any of those things. I can handle all that. It's just the thought of you leaving."
Holy Luck of America, I got a good one!
Wednesday, March 30, 2011
and all the skies are grey today
I just got got a call from the Dr.'s office letting me know I have been approved to take part in the trial. Although I was assured that we would be able to start injections this week, there is no room in the cancer hospital for me until Monday. Monday at 4 is the earliest we can start. They can't do the randomization (to see if I get the vaccine or the other drug) unless I can start injections within 24 hours. So I won't know till Sunday night if I even get to do the vaccine. I have surgery scheduled for Tuesday in case I get chosen to the other arm of the trial.
I have been praying to just get this over with. Prayers, temple, fasting, swearing. None of these are giving me any speed here. I never imagined I would have to wait another weekend! I tried everything today! Bawling over the phone, begging on my knees (I guess they didn't see that), having my cute 5 year old talk a little louder so they might take pitty on this MOTHER. I even sicked Josh on them. Nothing.
Pretty sure I could pull off a STAT trip tonight to Italy, but can't get a bed in a hospital 15 miles away until Monday?
I realize the perfect situation would have been a faster approach. But second opinions seem always to be a good idea. It takes a week to get into anyone, and then they tell you to go to someone else, etc. Scans take a week to get scheduled for. Then we find things on them, then I change my mind. Days turn into weeks, and weeks into months. I asked one surgeon to just take the dang thing out and then we can decide what to do, and he said don't take it out without a plan. I was refurred to MD Anderson by a dertmatologist, they called and said 2 weeks until the appointment, and then you have to have the workups etc. We would be looking at 3 weeks out to get into anything down there.
Obviously if there were a clear cut, great option, I would be well into that. With such poor response rates to current treatment, it is not all black and white.
It could be worse. I didn't have a dermatologist appointment until 2 weeks later than the day I had the first metastasis removed. Thank you to my endocrinologist!! I would have no idea this thing was going on inside if I wouldn't have had that little spot growing on my leg. Thank you small wart-like lesion! I can feel the tumor in my leg if I press really hard on just the right spot. I would never come up with that if I didn't know where to look. And I was NOT looking for cancer. I was cured, remember?
Look, if this cancer is inclined to stay in the leg, it will do just that for a while. If it has decided to break loose, it is probably in the system. I am putting my life in the hands of this Dr. and I don't need to be told things are going too slowly, because trust me, I know. I want this thing resolved pretty bad. I have to wake up to this nightmare every morning. And all I've had to battle this Beast is asparagus and berries?!! Worst weapons ever!!!
This has taken every ounce of strength of mind I have. And I am running out.
When you come over to talk to me about it I may ask you to cut the dang things out with my bread knife. I will tell you this situation is driving me crazy and I can't believe I'm not is some cancer ward puking my guts out. But please don't diss my Dr., because that will not help me heal. Let that anxiety be mine. It's kind of like how you can complain about your mom, but no body else can. (Not you, mom). I am putting my life in this guys' hands. All the opinions pointed to this Dr., and no one would be happy unless I was in his care. Well, this is what he is telling me to do. He is the best out there and I really like him. I have to trust him.
Sorry to ramble. I feel like hiding under my sheets and never coming out. I'm sorry I'm not answering the phone or door today, I can't take it. I suppose I'm in the depths of despair. Plus I'm angry. Two horrible feelings.
I have been praying to just get this over with. Prayers, temple, fasting, swearing. None of these are giving me any speed here. I never imagined I would have to wait another weekend! I tried everything today! Bawling over the phone, begging on my knees (I guess they didn't see that), having my cute 5 year old talk a little louder so they might take pitty on this MOTHER. I even sicked Josh on them. Nothing.
Pretty sure I could pull off a STAT trip tonight to Italy, but can't get a bed in a hospital 15 miles away until Monday?
I realize the perfect situation would have been a faster approach. But second opinions seem always to be a good idea. It takes a week to get into anyone, and then they tell you to go to someone else, etc. Scans take a week to get scheduled for. Then we find things on them, then I change my mind. Days turn into weeks, and weeks into months. I asked one surgeon to just take the dang thing out and then we can decide what to do, and he said don't take it out without a plan. I was refurred to MD Anderson by a dertmatologist, they called and said 2 weeks until the appointment, and then you have to have the workups etc. We would be looking at 3 weeks out to get into anything down there.
Obviously if there were a clear cut, great option, I would be well into that. With such poor response rates to current treatment, it is not all black and white.
It could be worse. I didn't have a dermatologist appointment until 2 weeks later than the day I had the first metastasis removed. Thank you to my endocrinologist!! I would have no idea this thing was going on inside if I wouldn't have had that little spot growing on my leg. Thank you small wart-like lesion! I can feel the tumor in my leg if I press really hard on just the right spot. I would never come up with that if I didn't know where to look. And I was NOT looking for cancer. I was cured, remember?
Look, if this cancer is inclined to stay in the leg, it will do just that for a while. If it has decided to break loose, it is probably in the system. I am putting my life in the hands of this Dr. and I don't need to be told things are going too slowly, because trust me, I know. I want this thing resolved pretty bad. I have to wake up to this nightmare every morning. And all I've had to battle this Beast is asparagus and berries?!! Worst weapons ever!!!
This has taken every ounce of strength of mind I have. And I am running out.
When you come over to talk to me about it I may ask you to cut the dang things out with my bread knife. I will tell you this situation is driving me crazy and I can't believe I'm not is some cancer ward puking my guts out. But please don't diss my Dr., because that will not help me heal. Let that anxiety be mine. It's kind of like how you can complain about your mom, but no body else can. (Not you, mom). I am putting my life in this guys' hands. All the opinions pointed to this Dr., and no one would be happy unless I was in his care. Well, this is what he is telling me to do. He is the best out there and I really like him. I have to trust him.
Sorry to ramble. I feel like hiding under my sheets and never coming out. I'm sorry I'm not answering the phone or door today, I can't take it. I suppose I'm in the depths of despair. Plus I'm angry. Two horrible feelings.
Sunday, March 27, 2011
run, peter, run!
My sister and I remember a story we heard as teenagers about someone who had cancer and would imagine his/her T cells attacking the cancer cells one by one, I believe with an ax.
My guided imagery? The cancer cells are weeds and I am the gardener. On my knees, bent over, uprooting every little unwanted bit of green out of the immaculate bed I am keeping. Armed with spade and hoe. Round Up and Diligence. Checking my rows again and again for anything that is not meant to be there. Looking over my freshly turned earth at the end of the day with satisfaction. Wiping a bead of sweat under my wide-brimmed hat.
Now that I realize I am going to have to fight this thing using my immune system, the Garden Warrior is obviously weak-sauce. No hard drugs to come in and kill this thing, just some help to get my own system to attack. I have to get it from the inside out. I need a stronger superhero. Someone a bit more intimidating than Mr. McGregor. Hmmm...
I am excited to see what they are going to tell me about the FDA approval of Yervoy. I think it sets up the perfect plan for me. Get the vaccine injections, which are supposed to get the virus into the cancer cells, telling the immune system to attack it and the cancer cell it has invaded. I think I have built a tolerance to melanoma, and my body is no longer recognizing it as foreign. The vaccine should change that. So the body tags all the cancer cells in the body to be killed. I do this for a while, and then get the tumor removed (it will be dead in my case). Then we start the Yervoy, which blocks the cancer's anticancer immune response and all hell breaks loose on anything left inside because those cells are already tagged to die. It never comes back. I am saved forever. The end.
My guided imagery? The cancer cells are weeds and I am the gardener. On my knees, bent over, uprooting every little unwanted bit of green out of the immaculate bed I am keeping. Armed with spade and hoe. Round Up and Diligence. Checking my rows again and again for anything that is not meant to be there. Looking over my freshly turned earth at the end of the day with satisfaction. Wiping a bead of sweat under my wide-brimmed hat.
Now that I realize I am going to have to fight this thing using my immune system, the Garden Warrior is obviously weak-sauce. No hard drugs to come in and kill this thing, just some help to get my own system to attack. I have to get it from the inside out. I need a stronger superhero. Someone a bit more intimidating than Mr. McGregor. Hmmm...
I am excited to see what they are going to tell me about the FDA approval of Yervoy. I think it sets up the perfect plan for me. Get the vaccine injections, which are supposed to get the virus into the cancer cells, telling the immune system to attack it and the cancer cell it has invaded. I think I have built a tolerance to melanoma, and my body is no longer recognizing it as foreign. The vaccine should change that. So the body tags all the cancer cells in the body to be killed. I do this for a while, and then get the tumor removed (it will be dead in my case). Then we start the Yervoy, which blocks the cancer's anticancer immune response and all hell breaks loose on anything left inside because those cells are already tagged to die. It never comes back. I am saved forever. The end.
Subscribe to:
Posts (Atom)