Then There Was Cancer (Maybe)

In December I had an abnormal PAP smear. I didn’t stress. There had been talk of HPV a six months prior, and while my doctor at the time of the HPV drama had been a bit of a pain, he had stated that the type I appeared to have was very low risk. It didn’t cause cancer, and it wasn’t something most people even had symptoms of. I had an impaired immune system, so I had symptoms, but eventually I’d clear the infection, and be totally fine. At least that’s what he said. I opted to see an OBGYN before starting Lupron during chemotherapy, and that’s when I’d had the abnormal PAP.

Initially I worried. They wanted me to come in for a colposcopy, but I couldn’t drive, and was seriously ill from the chemo. My new doctor assured me that I could wait for the colposcopy. It took a long time for cells to change, and the external lesion that I’d noted didn’t even appear to be HPV. She told me it was likely a skin tag, or a result of my Behcet’s. I went through my chemotherapy without really thinking much about the abnormal PAP smear. What where the actual chances that I’d have all of these things going wrong at once?

On Friday I went in and had my colposcopy. I was nervous about the pain, but otherwise okay. What were the chances? They had a screen where you could watch the procedure, and so I watched…until I realized that something was wrong. Very wrong.

I stared at the screen. I wasn’t exactly sure what a cervix should look like, but I knew that there was something seriously wrong with mine. The edge was bleeding, which the doctor said wasn’t totally uncommon, but the rest of it looked foreign to me. A large white mass covered the majority of the surface, breaking the line of skin cells that mapped out the edges of the cervical surface. The doctor informed me that they’d need to do a biopsy. She turned off the screen saying that it wasn’t fun to watch yourself be cut.

A medical student held my hand, and the biopsy was quickly taken. It didn’t hurt as badly as I thought it would, but my head was swimming. The doctor told me to be prepared for the call, that the changes were moderate to severe, and more towards severe. We talked about HPV and cervical changes, and I asked if I had any options. She said that did, but that we needed to talk once the biopsy results were in.

I haven’t gotten them yet, but I’ve talked to friends who were in similar situations. Cervical cancer is this odd taboo subject. There are odd staging levels. Even if you’re in the very early stages, it’s still cancer, but it’s approached as though it isn’t. They’ll just shave off some of your cervix, or cut out some of your cervix. My friend has miscarried, once in her second trimester, due to issues with her cervix from the procedures she had to undergo. Other women have the “cancer in situ” treated via these removals, but still end up having to go through hysterectomies, because it returns.

I’ve fought through six months of chemo. I’ve accepted limitations based on odd occurrences with my autonomic nervous system. I’ve told myself that I will still find love and start a family someday, even though I’m embroiled in a long and bitter divorce. I push and push, and then the unimaginable comes form left field. Nobody was sure if I had HPV or not. They were all fairly sure I didn’t, or if I did, that it wasn’t a strain that caused cancer. Now? Well, barring a miracle that shows it’s some odd lesion related to Behcet’s, I’m facing cervical cancer. Now I have to grasp at the hope that it’s early in the cancer game, and limited to an area that can be treated without impacting my fertility.

Of course the doctor told me point blank that I am, and always will be, a high risk case. I have to see a high risk OBGYN before becoming pregnant, plan carefully, and be followed closely. People think my depression or anger over my divorce is somehow related to jealousy, jealousy that he’s living with his girlfriend, and that they have a baby. I am jealous, but not just of him. It’s this overwhelming jealous anger at the universe, because people around me have solid careers, homes, families, etc. They’ve happily fallen into the life I’ve always imagined, while I struggle to just hang on to the bits and pieces of what I’ve managed to assemble for myself.

I want to be loved, and be in love. I want to have a family. I want to have a career that enjoy. I know that life isn’t that simple, and that nothing is as perfect as it seems, but when you’ve fought as hard as I’ve fought, just to have life kick you when you’re just starting to get up…it’s hard. I feel like the wind has been knocked out of me. I’m waiting for the call, and dreading it, all at the same time. Bills have mounted, and yet I can’t even try to find some work from home work, because if I even work just a little bit, on record, my disability could be denied. I have backpay that I’m owed, that I need, because my credit card debt is brutal.

There has to be something more than this. There has to be something better. I’m so sick of finding out that the light at the end of the tunnel is really just an oncoming train.

Then There Was Cancer (Maybe)

Day by Day

So perhaps my celebration of remission was a bit premature. I’ve been told I’m in remission, but that my disease was essentially so severe prior to Cytoxan, that I will need to stay on immune suppressing drugs…forever. I start Cell Cept on the 17th of this month. I’ve taken it before, with some nausea, but the hope is that my immune system is healed enough to tolerate it now. I’m still optimistic, albeit I remain guarded.

I’ve gained 40 pounds since the start of chemo, and I’m planning on losing some of the weight, and replacing some of it with muscle. Today I ate broccoli, carrots, and cauliflower, without issue. I’m still lactose intolerant, which wasn’t a huge shock, but that’s fine. My neurological issues persist to some extent, and I’ll be having an in home 3 day EEG to figure out if there is any obvious underlying abnormality in my brain. There have been some issues with my heart rate and blood pressure, so my neurologist has suggested not over exerting myself, or overheating.

The neurologic issues have been the most aggravating part of everything. I had convinced myself that it was all tied into my Behcet’s, and that once I finished chemotherapy, I would have no lingering symptoms. Now, granted, I just finished chemo three weeks ago, and my last seizure was one week ago, I’m still frustrated about what my neurologist said this past week. Simply put, he doesn’t know why I’ve continued to have break through seizures, but the suspicion all along has been some sort of autonomic nervous system malfunction.

I still struggle with hyperactive reflexes, though perhaps struggle isn’t the right word. I still have hyperactive reflexes, which is really awesome in terms of pursing a diagnosis. So many neurologists and ER doctors have suggested that I have pseudo seizures, and that my issue is psychological. You can’t fake reflexes…they’re literally reflexive. Prior to and following my last seizure, my reflexes were completely spastic. Simply touching my legs would send my muscles into an all out spasm, and they’d lock down. It’s hard to explain to someone what it’s like, other than you literally lose control of your limbs. I was really afraid I’d end up unable to walk like I did a few months before starting chemo.

So yes, I’m a remission of sorts. I can eat. My ulcers and other lesions are gone. I’ve begun going to the dog park, and hopefully I’ll be heading out for fun in the near future. These things are all happening…and yet there are concerns, too. I’m thrilled my hair started growing again, but sad that it is only an inch long. I worry over water consumption because I don’t really know what is triggering my seizures, or if I’ll be okay on my new medications. Each ache, pain, or exhaustive day, makes me worry remission isn’t here, or worse, that I’m heading towards a relapse.

There is so much unknown about Behcet’s, and even less about my neurological status. I’m happy, but I’m terrified, too.

Day by Day