Back in October, actually October 2nd, I went for my last chemo session for this round on Brentuximab... after this session we would do some scans and determine if I appeared in remission or if we should continue with the chemo. The neuropathy in my fingers and toes were pretty bad; so my doctor talked me into not having the chemo that day, we would do a PET scan to determine if the cancer was still active and then decide if I could stop the chemo altogether or if we needed to just delay it, giving more time between sessions and giving my nerves a chance to recuperate.
She said she never had to talk a patient OUT of doing chemo before… I was concerned about the cancer coming back again. When I finished the round of CHOP last year and was “declared” as “appears to be in remission”, it was two weeks and the cancer on my arm had reappeared, then a few weeks after that it appeared in the lymph node under my right arm again… also spreading into my chest area and into my bone marrow in the pelvic area. So I had reason to be wary.
We were preparing for the PET scan when we were notified that Medicaid denied the request! I received a letter from the panel of their decision by certified mail… we had to sign for it! Unbelievable!! This NEVER happened before… I had been on Medicaid for six months and had just been renewed on Sept 11th. Evidently part of the change was the beginning implementations of Obamacare, such as the setting up of the “panels”. So I guess Republicans were not wrong…
[A little background… last year my cancer had progressed and took a pretty bad turn in November. In December I applied for Social Security Disability and Medicaid. Up until this point I had been getting help through the hospital’s financial aid services, I lost my insurance when I was laid off in July 2011. I was approved for SSD in January and approved for Medicaid in February. My Medicaid deductible is $5400.00 every six months… so it’s kind of like having insurance. Very expensive insurance… especially for someone on Disability.]
So, my PET scan had been denied. They informed us that we could do a CT scan. We didn’t need a CT scan. We needed a PET scan because the PET scan lights up the active cancer. We were looking to see if the CANCER WAS ACTIVE so we could determine if I still needed the chemo or if I could take a break! Since we didn’t have much choice, we did the CT. It showed two irregularities, or nodules, or something… one in each side of my lung. Slightly concerning… but not immensely. [When I was first diagnosed in 2004, the scans showed some nodules, one in each lung. The doctors there assumed it was lung cancer and immediately put me at stage 4 and started CHOP chemo. I had one dose and then moved here to NC; the doctor here stopped it immediately and said there hadn’t been enough testing. It was determined to possibly be scar tissue from when I had a severe case of pneumonia in 1991.] I thought maybe this is what was showing up this time also, my doctor doesn’t agree. She says the scan I had earlier this year did not show this. So now we’re up in the air… is it infection from a cold, was it the scar tissue and just a fluke that it didn’t show up in the last scan, or is it cancer that has traveled to my lungs?? Which would be WAY BAD!
Then I received another letter from the panel (certified mail, of course)… they also denied the physical therapy my doctor prescribed for the neuropathy. WOW!! I began to wonder if I was ever going to get approval from Medicaid for anything ever again. I really felt as if I was getting left to die. This was becoming unreal.
When I saw the P.A. on Nov 5th, there was discussion of symptoms coming back and I was informed that we were going to wait until January and do another CT, since Medicaid would not authorize the PET. I was highly upset! I had been off chemo since September… my symptoms were coming back in full force, the difficulty in breathing, shortness of breath, the wheezing, the pains, etc. I told her I thought it was very much like playing with fire! I have symptoms coming back, a possibility of it being in my lungs… and we’re gonna wait another couple of months?? Are you serious? I’d hate to wait until January, do the scan, and then find out, SHIT, if only we scanned sooner, now it’s too late! If only we had caught this sooner! I mean REALLY?! I DID NOT GET THAT AT ALL! The P.A. told me she understood and went out to talk to the doctor. It was decided that we would do the PET scan, but through the hospital financial aid services. I thought, “Thank God!” I believe it was the very next day that I received a voice message telling me that the doctor had changed her mind and that she didn’t want to see me until January. I was shocked!! I was dumbfounded!! I was speechless! After the initial shock wore off I became upset, angry, severely pissed off… HOW DARE THEY JEOPARDIZE MY LIFE!! I wanted to cry, but I was so angry… I wanted to go down there and demand the scan; I was going to tell her that if we wait and the cancer spreads while they do nothing, then I was going to sue her freakin’ ass!!! I was so upset and so angry that I ended up shutting down. I couldn’t call, I was afraid of what would come out of my mouth. I didn’t want to go running down there in fear of creating a major disturbance and having security called. I contemplated getting a second opinion, and I thought about finding a new doctor. But I adore my P.A.
I shut down for about two weeks… then I had something appear on my back. This was taken on November 29, 2012. *In some of the photos I marked some things that looked suspicious to me, they appear to be growing as well as it all progresses. They're just little bitty baby ones right now.
Okay, let’s back up a bit. Right before I saw the P.A. back on Nov 5th, I had what appeared to be some kind of bite, like a huge mosquito or bug bite on my right arm. Didn’t think much of it so didn’t mention it. But now it had become perfectly circular, it was very pink and had a red line around the circumference that was a little indented. In a way it looked like a burn, kind of like from a car lighter. At one point, after a shower, the top layer of skin came off and it REALLY looked like a burn. Very strange. Wasn’t sure if it was cancer.
Didn't photograph the first stage of the arm thing, the big bug bite stage, then it started to look like this.
Then, a few days later, after the shower it looked like this.
Then this thing popped out on my back. This was the day before Thanksgiving. I had an appointment with the P.A. on Dec 4th for Labs & Exam, figured I’d call and bump it up, then figured at this late time there probably wouldn’t be any openings. So I called my family doctor. She thought the one on my back looked like an infection, so she put me on antibiotics to clear it up. I told her that mom removed a tick last year from approximately the same place, so she had blood work done also for Lyme disease and Rocky Mountain Spotted Fever, just in case. Well, the antibiotics didn’t affect the one on my back at all, but the one on my arm started clearing up. At this point I don’t know if it was the antibiotics, or it just running it’s course. On Nov 29th I had mom take some photos of the one on my back… SOON AS I SAW IT I KNEW… I knew it was cancer!
Here it is on December 1, 2012
Here it is on December 10, 2012
I saw the doctor on Dec 4th, told her I was fairly certain it was cancer. She looked at it and agreed. She said she also feels swollen nodes on the left side of my chest/arm area. Said we needed another CT and a PET scan. Just found out Monday that Medicaid approved the scans, thank God! My PET scan is on Thursday and the CT is Friday. I see the doctor on Monday, Dec 17th for the results and game plan. Still feeling uncertain about my doctor… feel a little betrayed and definitely feel that trust has been broken. Will definitely need radiation, which I think we need to be moving a little faster on. It has already grown substantially and I’ve found several new ones breaking out, they’re still tiny, but coming along just as fast. We keep taking pictures every few nights to track the progress. It is EXTREMELY fascinating to see it like this… my camera phone is AWESOME!! Some really great high-def photos. The little ones we couldn’t see with our eyes, we wouldn’t have known if we hadn’t taken the photos. Then when I used the magnifier on them... WHOA!!!
You have to admit... it is a little fascinating, isn't it!?!
So that’s what’s been happening and where I’m at! In the middle of all this right before and during Christmas… AGAIN! Well, look at it this way… if the Mayan’s are correct and the world ends on 12/21… at least I won’t die from cancer and I won’t have to do this crap anymore! Oh, that reminds me, I have a dental cleaning on 12/21… got to have clean teeth for the end of the world! Flash those pearly whites! :D