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.

And now for something a little different..........

 

I actually wrote these next few entries over the last few weeks. I decided for my sanity, and so I don't have to re-write some of these, I am going to post them all at once. Please keep that in mind if this section seems a little disjointed.

I had my appointment with my oncologist, Dr. Cancer, a few weeks ago. I had my wife, mom and dad in the room with me. Dr. Cancer went over my pathology report and explained that the cancer had spread from my uterus to my left ovary, fallopian tube and down into my cervix. He had noticed some “suspicious” cells in my abdomen that he thought may have been cancerous. Thankfully, it was just inflamed tissue and there was no cancer outside of my “female parts”. Since the cancer had spread, he informed me that further treatment would be needed. This will come in the form of radiation and chemotherapy. Now, I have a decision to make. When I saw “I”, please note that I am not making this decision by myself. My parents and wife are both involved with helping me make decide. I guess I need to let you know what I am deciding. There are 2 basic forms of radiation, one is the beam type, where they target the radiation beam externally to the spots that are a concern. The other type, is an internal radiation called “brachytherapy”. It is targeted and administered, well internally, in my case, vaginally.  Why do I have to choose between the two? First of all, this cancer usually appears in women in their 50’s. There is little precedent for the doctors to follow, since I am about 15 years too early for this type of cancer. Dr. Cancer says that if I go with the beam radiation, not only will it take longer, I could face some serious complications 25 or 30 years down the road. These could include very pleasant things like loss of bladder function and “colon issues”.  Now with the internal radiation, they do not think that there are going to be these types of side effects. However, this hasn’t been used long enough, or with many women my age, for there to be any reports of long term side effects. Oh yeah, I can also choose to not have any further treatment. This option is not even being considered, so we will just pull that one off of the table right now!

So I have spent the last several days researching both options:  medical reports, personal accounts and other reports on both radiation options and even animated videos on how each one is performed. Here is my thought process. Dr. Cancer is an oncological gynecologist. He is one of two in town. This is all he does. I feel very comfortable with him and the information that he has shared with me. My dad has worked with him in the OR, and says that he will do anything for his patients to make sure they are comfortable and getting the best possible care. Dr. Cancer wasn’t trying to push me towards any one option, but my dad and I both felt that he was suggesting that I go with the internal radiation. I have discussed my options with my wife, friends and family, and I think the internal radiation is going to be my choice.

In my research, I have also discovered that there are diets and eating plans that will help with some of the side effects of the chemo and radiation. Mostly what I have found online is a diet low in carbs, high fat items and high in proteins and flavonoids. I am thinking I will probably start eating more soy based products and maybe include more fish. Next week, I have an appointment with an  oncology dietician. My hope is that she will give me more direction for this new diet.

Now, how do I feel at this point? Honestly, I feel pretty good. I am still kind of sad that I can’t have a baby, but obviously, I wasn’t meant to give birth. I do not believe that this cancer is a death sentence. In fact, I think it is a rebirth for me. Since my surgery on January 5^th, I have actually lost 35 pounds. Not the best way to lose weight, but I will take it. I am more serious than I have ever been about getting healthy. I am trying to get my energy back in preparation for my chemo and radiation. I have walked every day this week with our dog, Koda. I find that the bad weather that we have right now is a bummer because I may not get to go for our walk tomorrow. I have cut out fast food and am paying more attention to what I eat and how much. 

So I saw Dr. Butt’s nurse today. I am healing well and should only have maybe one more wound check and then I will be done with that unpleasantness for a while. Not only an I dealing with the cancer and all the fun that brings, I am dealing with a drain and an open wound in my ass. Well, I guess in a week I will just have the drain to deal with.

I have felt pretty darn good the last few days and actually had the thought that I was mostly back to my old self. I was very wrong. We went to my parents house to visit and had gone into the basement to see my mom’s latest quilting project. Those steps kicked my ass. Now I know these steps very well. I lived in that basement for a good 15 years. Going down them was bad enough. Coming back up? Damn near killed me. I needed a nap by the time I got to the top. Looking back over the last few weeks, steps have been my nemesis. I thought it was just the jarring of my stomach muscles and such. Apparently, my legs have completely forgot how to go up and down stairs.

I am getting ready for my appointment tomorrow. This is a follow-up from the previous appointment. I guess this is mostly a question and answer period for me and my family so I can decide how my treatment is going to progress. I’m looking through all of the material for the research study and stuff that I have accumulated over the last few weeks, and I find myself in tears. I am scared. I’m scared that I will be in the small percentage that gets the really devastating side effects. Hell, right now I’m more worried about these side effects than I am about the cancer coming back. Just to name a few : kidney failure, tears in the wall between the vagina and rectum, seizures, diarrhea, other cancers and deafness. Or I can do nothing and take my chances that the cancer spreads. Forgive my French here, but this seems to be a damned if I do and maybe dead if I don’t. I don’t want to have this kind of responsibility. I have had to make some big decisions before, but never one like this. Never one that will literally affect my life. When you are faced with something this big, how do you know you are making the right choice? There are so many what if’s here, I honestly don’t know how to choose. We sent copies of the research material to two of my aunts, both of whom are nurses. They brought up some great questions that need to be answered. I guess I naively thought that one of them would provide me with an answer.

What If's and What-not

So I now have this death sentence, this destroyer of dreams. What the hell do I do now? Well, the wife and I packed up and stayed with my mom and dad for a few days. We spent the time just being together and I spent much of my time thinking about what it meant to have cancer. When you are facing something like this, I believe you need the support of your friends and family. I know that if not for them, I would be drowning in despair and self-loathing.

Why a dream destroyer? Wife and I were making plans to start our family after all the issues with my backside were resolved. We had a donor and were talking contracts, all that fun stuff that we gays/lesbians have to deal with. I was going to be the first to be impregnated. Now, that dream that I had had for as long as I could remember, to be a mom and feel that life grow inside of me, was dead. I never really thought that the cancer would kill me, my biggest upset here was not being able to have children.

I had decided that I was not going to hide my cancer like it was some big dirty secret. I was going to tell everyone that would listen. It was never about getting sympathy. What I really wanted, was to be my own PSA. I want all my female friends and family to understand the importance of your yearly exam, either with your gynocologist or regular doctor.  I think, that if I had been getting my regular checkups, I might not be going through all of this mess. Don’t get me wrong, I still would have cancer, I think I might not be going through all of these additional treatments. 

I guess I should expand that a little. First of all, I am not getting caught up in the "what if's". This is still part of my life as a PSA. This is why it's so important to get checked on a regular basis. If I had gone to see Dr. Gyno when I first realized I was having a problem, I may have only had my uterus removed. And maybe, just maybe, I would have had my surgery before the cancer had spread into my ovary and cervix. This spread of the cancer to my ovary and cervix is why I now have to get the additional treatment (chemo and radiation).

The Phone Call

Why am I writing this? Well, first and foremost, it’s a journal of sorts for me to keep track of my experiences while on this journey. And I guess secondly, maybe my experiences can serve as a warning to others out there to have your regular check-ups or give you some insight for when you need to give comfort to someone who has just learned that they too have cancer.I will never forget the day that my gynecologist, Dr. Gyno, said “Sara, its endometrial adenocarcinoma. Cancer.” My heart stopped and everything went in slow motion, kind of like when two long lost lovers run in slow motion towards each other across a field of flowers. In my case, there was no happy ending just time stopping and everything moving like molasses in winter. No fade to black as the happy couple kisses. Just the most horrible word in the English language: CANCER.  I vaguely remember Dr. Gyno telling me that it was very common in women my age, it’s very treatable and a bunch of other statistics that were supposed to comfort me. I know he was trying to help, but when you are told that your own body is trying to kill you, the only thing you really want to hear is “Oh, my bad. Those aren’t your test results. You just have a yeast infection. Sorry.”

How did this all start? Well, the beginning of this tale is about a pain in my ass. No joke. In August of 2010, I had surgery, performed by Dr. Surgeon, to clean out a large abscess I had grown in my left butt cheek. It healed, mostly, then grew back again in August of 2011 and I went back for another surgery.  Then we rinse, lather and repeat the same surgery in October, November and December. Now, I must follow up with, this was not because of any lack of skill on my surgeons part. My body was healing faster than it should, leaving little pockets for the infection to grow back into. Now, right before the surgery in December, Dr. Surgeon sent me to have an MRI of my abdomen. The thought here was that there was a tract between the abscesses that was passing the infection back and forth. While reading the MRI, Dr. Surgeon saw that my uterus was enlarged. OK, now I have to back up a little here too. I had been having an almost constant period for about a year. Why didn’t I get this checked out? Honestly, I was having so much trouble with my butt; I thought I would just address one medical issue at a time.  So Dr. Surgeon sends me for a pelvic and transvaginal ultrasound. Basically, internally and externally they looked at my uterus and ovaries. From there, I was referred to Dr. Gyno who did a pelvic exam and pap smear. He told me I needed a D&C during the December butt surgery. Not only did Dr. Surgeon and Dr. Gyno operate on me during that surgery, I also had Dr. Proctologist assisting. His job was to add drains into the abscesses so that they could heal at the correct rate.  The result of that D&C from that surgery is what lead to that fateful phone call.