We have a plan!

Yesterday was a long day. I went to outpatient surgery to get my Power Port installed, inserted, and implanted whatever the proper term is. Was at the hospital at 730 a.m. and was home by noon. For those of you that don’t know, the port is like an easy access already started IV in my chest. Instead of jabbing me with lots of needles several times just to find a useable vein, they nurse can just go right to this port to draw blood or start my IV. This originally wasn’t going to be done until I was ready to start chemo, but the poor nurse had such a rotten time starting my IV for my last CT scan that she suggested it. I talked to Dr. Cancer about it, and he felt it was a great idea. Not only would it make my blood draws and injections easier, the small incision would have time to heal before chemo starts.

 I would like to point out, that I find it funny that I have been to the outpatient surgery area so many times over the last two years, that many of the nurses, PCA’s and other support staff recognize me. And those are the ones that remember me from previous visits, not to mention all the ones that know me in the OR area from Dad. They are all wonderful people and I appreciate them all. The wonderful Carolyn did my anesthesia again. She has been with me for most of my surgeries/procedures at this point. It is so comforting to have her there watching over me. I started waking up towards the end of my procedure and she was right there comforting me and making sure I wasn’t in too much pain. I think I was feeling the last few sutures going in, but I had a blue sheet over my face so I didn’t see much other than, well, the blue sheet. Dr. Cancer gave me a little more local anesthetic to ease the discomfort which was very much appreciated. They took me right back to my room without the usual stay in recovery. When you are just sedated you get to go home much faster! I ate my crackers, peed and got dressed and dismissed. Those are the requirements to go home, for those of you who are living vicariously through me. You have to handle food/liquid in your stomach without nausea, get up and walk a little without falling on your ass or face, and pee. This can be a little more difficult than it sounds, especially if you have just been “corked out of your mind” as my dear Carolyn puts it. But like a trooper I ate and peed and Mom got me home. I had my traditional after-surgery food: Idahoan loaded mashed potatoes. Again, sad that I have an after surgery tradition, but right after surgery, even a minor one, you are not supposed to eat anything really heavy, greasy or spicy to prevent nausea after your anesthetic. These potatoes are my favorites! Then, it was nap time!

After nap, we headed to my next appointment, to have a consultation with my radiation oncologist, Dr. Radiation. I love that The Hulston Cancer Center, where I will go for my radiation and chemo is designed to be so soothing for patients and their families. When I walked in yesterday, there was a guy playing the grand piano in the foyer. Inside Dr. Radiation’s office, there is a large glass aviary with about a dozen different species of finches. I could have sat there for hours and watched those little guys! I signed a bunch of papers and was guided back to the exam room. Once Dr. Radiation got there, we went over my medical charts and he went over what I can expect during my treatment, both the procedure and the possible side effects. I have to point out that now, the radiation used is much kinder and more gentle that was used in the past. I should come out of the 5 weeks of radiation with a little more than sunburn on my lower abdomen. Then he gave me another pelvic exam. I know that these things are necessary, but I have had at least a dozen of these since December. I am not complaining, they aren’t that bad it’s just a lot of them. I was thinking about having a revolving door installed or letting these people get frequent flyer miles or something. I left his office with a DVD of a 15 minute presentation of what to actually expect for my treatment and a handout of the possible side effects and how to deal with them. The video was very helpful. When the nurse handed it to me, she said “a picture is worth a thousand words” and this could not have been a more true statement! I had an idea of what I would be going through for this phase of my treatment through my own personal research, but to see a woman actually get situated on the table and a simulation of her treatment, eased my worries some. I also left with my appointment for the next day.

This appointment is to get my marker tattoos and get me positioned for the treatments. This visit is supposed to take several hours. The placement has to be exact in order for the treatment to be effective. I must add that unfortunately, the radiation that I will receive will NOT give me any kind of super powers. I am grossly disappointed in this and will write a strongly worded letter to someone, just not sure where to send it yet. After we got home, I had to ice my shoulder. The port itself was not hurting me, my shoulder and upper arm were. This was a little scary, only because it was very similar in location to the excruciating pain I had there after my hysterectomy. I iced it down all night, took some Motrin and a pain pill and right now it’s just uncomfortable, which I can handle. So, we have a road map for my treatment now. Radiation, external beam, brachytherapy (internal radiation) and a rest period will take about 10 weeks. Then chemo picks up and from what Dr. Cancer said that will be approximately 18 weeks. Dr. Cancer was not kidding when he said this was a year long process.

Taking Control or Birth of the Scalp Master

Since I was diagnosed, I feel like my life has been out of my control. Cancer took my uterus, ovaries and cervix, so I had no choice there. We only have one oncology gynecologist in our insurance network (not that I am complaining, I adore my doctor and could not be more pleased with him, just had no choice). The insurance company could not be convinced to cover the research trial for my after surgery treatments, so I had to go off trial for those. (In a previous post I detailed how I researched my options and finally decided to go with the trial.) The chemo therapy is going to take my hair, but that won’t happen for a few months because I have to go through radiation first. So now, I am the master of my scalp. I all but shaved my head tonight. I will not let my cancer or my resulting treatments TAKE anything else from me. I decided when I would lose my hair. There isn’t much else that I get to decide regarding my cancer or my treatments. The doctors decide what course the treatments will take from here on out. My only decision will be morning or afternoon appointments. So I took control of my hair destiny. I wish I could say that this was the result of some radical thinking or revolutionary thought process on my part, but it is not. Much of literature I have read on coping with cancer and side effects for various treatments suggests that the patient shave their head so they can control when they lose their hair. So I got the idea there. I am not so much concerned with losing my hair, it will grow back eventually. The loss of the rest of my body hair during treatment just seems like a bonus to me. I am a little worried about losing my eye lashes though. I figure if I lose hair from any body part I can shave it won’t be too odd, it will just take a little getting used to. But eyelashes? Eesh. I have an appointment next week for a baseline CT scan. Then I will see a radiologist for one of several sessions where I am positioned and readied for the radiation treatments. This will be the external radiation treatments. These will be once a day, five days a week for five weeks. The next three weeks I have internal radiation treatment once or twice a week. I will get a two or three week rest period with no radiation, then I will start the chemo.

Waiting Game

I decided to participate in the research trial. This decision is not one that I have made lightly. I have to go through the chemo at the very least. If I take part in this trial, I will hopefully be helping some other woman in the future. I strongly suspect that in the not too distant future, more and more women in their thirties will be in my shoes. Although family history had much to do with my getting cancer, my weight, high blood pressure and not having a child yet, all contributed to it. With that in mind and the media telling us every day that we are becoming more obese, and as a result having more obesity related health issues, I came to that conclusion.

Now, here is where I am to date. I made this decision almost 3 weeks ago. The very next day, I found out that my insurance company would not cover the research trial. WHAT?!?!? I spent all that time making that decision for nothing? So I got on the phone to the nurse who runs the research trial. She e-mailed my nurse and the nurse and other office staff faxed a letter to the insurance company to get them to review their decision. Four days later, the office followed up on the letter to see if a decision had been reached. They had magically not received the fax. So, the office staff, being the awesome women that they are, faxed them another copy, sent another by certified mail, AND had the nurse call and speak with them.

And we are still waiting. Apparently, the insurance company can take as long as they want to make a decision. It’s a good thing I don’t have cancer or, wait, I do! Assholes. Let be clarify something, I am not in danger of dying from the cancer in the near future. This is more preventative measures to make sure the cancer did spread out beyond my lady parts. I am just so damn sick of waiting. I agonized over this decision, made it, and now I just have to sit a twiddle my thumbs. I want to yell and scream at someone, but there is no one to yell at. I am pretty sure if I yell at the insurance company; they will either say no or wait until I die of old age before giving me an answer. I am not sure when I will decide if I have waited long enough and just have the non-trial chemo and radiation. Yet another decision to agonize over. It’s times like this when I wish I was just a kid and someone else would make the decisions for me.

As of this morning, I still have no answer. I called Dr. Cancer’s office to see what the status was. I am currently waiting on a call back from the nurse. Hopefully we will get an answer and get this show on the road.