Sleeping? No it's a full on chemocoma!

Our new word of the day is "chemo coma". That's what I was in for days 2 through 5 after chemo treatment number 2. It's not as bad as it sounds, I just like the word. I slept for three days. Not a Rip VanWinkle sleep. I woke up and ate, used the bathroom and yeah that was about it. I did make myself go upstairs and get food, most of the time. I know that the movement is good for me, see mom? I do listen. Sometimes. But I would eat, give the food a few minutes to start digesting then go back to bed. Of all the side effects of chemo, this was certainly the easiest to deal with. I had a really nasty bout of nausea Thursday night after treatment. I just knew that if I could just throw up, I would feel so much better. But that never happened. Thankfully, modern medicine has provided me with Zofran. I took one, and I don't know if it cured the nausea or not, but it did make me sleep, which sometimes is just as good. When I woke up several hours later, the nausea had passed and I was hungry.

This time around, I ate pretty much whatever I wanted. Nothing seemed to bother my stomach. I have now completed 3 of my 8 treatments and so far I have been very lucky. My nausea has been almost non-existent, and I pretty much just go into chemo coma for 4 or 5 days and then I am fine until the next round. I also have some arthritic like pain in my knees and hips, but that is a common side effect of the meds I am given.

Not much has hanged since my last post, which is why I have posted much of anything for the last month. I still struggle with not being able to bear a child. I have yet another friend who is now 1 month pregnant. It's hard because I am so happy for her and her partner, but part of me wants to just sob and weep because that is something that  I will never know. I know that Universe obviously has something else in mind for me, but right now, I don't have to like it. I am still working on coming to terms with this. It will just take some time.

I think that this short post will be all for now. It's bringing up too much for me to handle right now. Love and Light to you all.

Random Thinkings

I am getting ready for chemo treatment number 2 tomorrow. I am still a little aprehensive about it. I know the procedure, but what I don't know, is how my body will react to this and each of my subsequent treatments. The first one, really wasn't that bad. I learned some valuable lessons: McDonald's is never a good idea, and pot roast is right up there with the Golden Arches of Evil.

I am sadly disappointed that I have not lost my hair yet. I am extremely pissed off that I have yet to develop any super powers. I think that the "What to Expect When You Have Cancer" brochure needs to be trashed and re-written. All I have gained from my treatments are an increased need for sleep, a few hemerrhoids and a couple of boils. All in all, I think these are shitty super powers and seem more like punishments than rewards. I guess I should be thankful, I haven't grown extra hair in odd places, like my eyelids, the 'roids are smaller than a Buick and the boils are not in a visible location, like on my face. Sometimes being positive is all you have. I am not sure that I have a handle on that yet, but I am trying!

I am in the process of packing my "chemo bag". It's a small messenger bag that has my stuff in it that I might need for the day. Right now it includes:

a small pillow, hand made and donated by some amazing person
my anti-nausea meds
ginger candy and candied ginger
cell phone charger
protein bar
dried fruit
various butt creams and ointments
gauze ( needed for the drain that I still have in for my abcess)
books (Iron Kissed by Patricia Briggs and Blow Fly by Patricia Cornwell)
handicapped hang tag and corresponding paperwork
gum wrapper
my cancer notebook
a pen
my comedy notebook
my storage unit key (it's not needed for chemo, I just always know where it is if I leave it in there)
numbing cream for my port site and Tegaderm patch
a protein bar
miscellaneous fuzz
iPod and headphones

I may add a few more things. I am open to suggestions. I still have room, so I have this need to put more stuff in it. Oky kiddos, I am going to go swimming and hang with my Dammit Sister, The Boy, his mom and my mom. Enjoy!

But It's a Good Pain.....

So I had my first chemo treatment last Thursday. That was a looooong day. It started at 9:30am with the first nurse checking me in and getting my vitals. Then a second nurse accessed my port and did my blood draws and hooked up the port so it was ready to access for chemo. Then I waited for almost an hour, half naked with nothing to cover my nethers but a large paper towel. After yet another pelvic exam, I was given the green light for my chemo treatment. The CT scan I had earlier in the week came back completely "unremarkable". In medical speak, this means that they were unable to detect any new growths, everything was where it belonged and nothing that I had removed in January had grown back. I was dismissed and had about an hour to kill before I was due at the Cancer Center. We stopped for a sandwich and ate in the parking garage. Call it a pre-chemo picnic.

Once I was checked in, I was given my choice of chairs, but they wanted me close to the nurses station, just to keep an eye on me. There were lots of "pre-meds" given to me before we got to the actual chemo drugs. The idea here, is that if you give these meds to prevent the anticipated side effects, they become easier to treat, if not completely eliminated. Some of the pre-meds made me pretty sleepy, so I know that I napped for a while. I was visited by the on site pharmacist. He brought some handouts about the drugs that I was being given. He spent maybe an hour with me, going over what I was being given and why. He also explained possible side effects and some preventative measures I can take to avoid some of the potential mouth issues I can encounter. It was a little bit overwhelming, but for me, having all of that information takes some the "ohshitwhatthehellishappeningtome" out of it.

The first chemo drug goes in very slowly. And by slowly, I mean about 3 hours. It sounds like a long time, but I think with the newness of the process it didn't seem to be that long. Next I get a huge dose of Lasix. For you non-medical folks, this drug will make you pee everything you have had to drink in the last 4 days, over a 1 hour period. In the middle of doing the 100 yard dash for the potty, I have to sit still while they administer chemo drug number two, "red death". I tried to convince my nurse that she could push the drug while I just sat on the potty, but apparently this is not sanitary. Red Death, is so named for several reasons. One is that it can burn like hell if it gets on your skin or blows out your vein. The other, which I think is kind of neat, is that it makes your pee and I am told other body secretions, sweat, tears etc. red or pink. While that is fun, you have to keep in mind that because of the toxicity of the drugs that are being pumped into my body, and the radiation that I have undergone, I also have to be aware of blood in my urine. Thankfully, the affects of the red death only last for about 24 hours.

By the time we arrived at home, it was almost 7pm. I really didn't feel that bad, mostly just tired. Next day I had to report back to the Cancer Center to get a shot. This shot is designed to stimulate my white blood cell count, since chemo kills those. They had explained that the stimulated production can cause pain in the big bones (legs, sternum, etc). Think of freezing a bottle of water. As the ice forms, it only has a fixed amount of space to expand into. Same thing with the white blood cells. It's one of those double-edged swords; if it hurts, it's working. That is not a comforting thought. I followed directions and took a Claritin and an Alleve (OK I took two Alleve). The nurse that gave me the shot also told me if I had any pain meds to take one before I went to bed to make sure I didn't wake up in the middle of the night hurting. Done and Done! As I write this now, six days after this shot, I have had no pain from it.

Nausea is not fun. I am not sure which feeling is worse, actually throwing up, or feeling like you might, for hours at a time. In the first few days post chemo, I found that I could keep the nausea at bay if I ate small, snack sized meals every few hours. I only made two mistakes with this: eating a sausage biscuit from the Golden Arches of Hell and about a 1/4 cup serving of pot roast. Lesson here? McDonald's really is Satan's playground and red meat is as evil as everyone says. OK, the latter is not necessarily true. I think I might be okay with a lean ground round or something. Our suspicion is that the fat and grease, as well as the difficulty that a healthy body has processing red meat were just too much. I can live with that. I also found sweets to be a big issue as well. I stuck with slightly salty foods and really did just fine. I must add here that while effective, cancer is a shitty diet. I have lost about 8 pounds in the last week. I think next to figuring out what I can and cannot eat, getting up in the middle of the night to eat has been an adjustment.

A week has passed since my first treatment. The first 4 or 5 days were pretty rough, but not really that bad. The last 2 days, I have felt great. I am still sleeping about 12 hours a night, but I have not needed a nap during the day. Also, I have been able to eat whatever I wanted to, just in small portions.

I have to say, that without my family and my wife as traveling companions on this journey, it would be so much worse. All of you, with your words of encouragement, prayers, candles and "just checking in on you's" have been worth more than you will ever know. I love you all.

The Good, The Bad and The Chemo Brain

I have done my research and talked to other survivors, and the one thing that is consistent about chemo, is that you can't predict how it will affect you. Every one's experience is different. A few things Dr. Cancer has assured me of: I will loose my hair around week 3 or 4, and he will load me up with enough medicine that I should never be sick to my stomach or vomit. That is somewhat comforting. I have previously written that the hair loss does not bother me, although the loss of my eyelashes just seems beyond weird. I have been assured that gone are the days of experiences like in " Dying Young". What concerns me is "chemo brain".

What is chemo brain? Apparently, the drugs used for this phase of cancer treatment, causes "mild cognitive impairment". This can include the inability to multi-task, lack of focus, forgetting dates, names, and um...those things, yeah, words. This is supposed to be mostly temporary. Mostly. I have always prided myself on being fairly intelligent. It concerns me that this particular aspect of myself I might loose. I guess I can only hope that if it does become a permanent side effect I will have lost enough cognitive ability that I won't even notice it.

Now that we have an actual schedule for my chemo treatments, the reality is setting in. I feel like setting up a countdown clock, we are T-minus 5 days for massive amounts of poison being pumped into your body. I do not think that this is one of my more productive ideas. I have been thinking a lot about hair loss again. I haven't changed my mind, the thought of not having to shave is rather exciting, and I am not at all upset about loosing the hair on my head or my eyebrows. What still concerns me, is loosing my eyelashes. I really think that the only thing that was going to keep my from looking like a freckled bowling ball was my eyelashes. It was suggested, and I am not ashamed to admit that I did not think of it. It seems wrong for me to even consider it. I say this because it seems false, no pun intend, since I do not plan on wearing a wig to cover the baldness on my head. That, and it's just not me.

Now there are some good things that have happened. Since moving back in with my parents, I have spent more time with my nephew, The Boy. What a huge blessing this has been. Before all this started, he knew me, but we hadn't spent much time together. We have really bonded. Now, I am no MiMi and I never will be, but I am Auntie Sara and that's a pretty good thing. He frequently seeks me out for help with feeding Melvin, our Betta fish, and now, he associates me with fishing, or what he calls fishing. Since he is a 5 year old boy, you can't tell him he's not doing it right, because it's right for HIM, and ultimately that's what matters. His idea of fishing, is to take one of my many plastic worms, carefully place it on his hook, all by himself, then cast it out. He immediately reels it back in, declares "This one isn't working" and proceeds to get another one out. The Boy has no patience, and let's face it, that is about 90% of fishing, but he has fun and he is with Auntie Sara, and that is all that matters in my book.

The other good thing is my relationship with my Mom. We have spent more time together in the last 5 months than we have in the last 5 years, and I am loving it. Even just the little stuff like a trip to Wal-mart. We laugh and talk and laugh some more. The laughing is the most therapeutic part for me, and honestly my favorite. Growing up, mom always did fun stuff with us, but I don't remember her laughing with me. It was usually my dad and I, and our now infamous "Pun Wars" in the kitchen, but not not her. Now, we crack jokes and poke fun at each other. She has always been my mom, but for the first time in my life, I feel like she is my friend too. That is just an odd transition for me. I am not sure that this ever would have happened without the cancer.

So for all the unpleasantness that has come with the cancer, so much good has come from it too. I want you all to find the good in your shitty situations, It's there, you just have to find it. I know I did.

So Tired of Being Tired

I  am tired. I can't get through my day without a nap. I get up and help my parents around the house as much as I can, but it is getting old. I know that I have to give my body time to heal, it's been through so much in the last 5 months. I have about 5 weeks, or so, before my chemo will start. Although I have been told over and over that each person's chemo experience is different, it's a very common complaint, the fatigue. It may last a day or two, or be a constant companion. I was exhausted throughout my radiation, so I guess that I will have a similar experience with chemo.

I have 3 radiation treatments left. These are high dose, site specific treatments with a small radiation "seed". Now, the process to get set up for this, at best, was retched. I try to be positive, but I had 2, count them 2 catheters in and another cylinder in my vagina. I saw how big each one was, before it was inserted. None of them were really that big, but my perception of their size, once inserted, was much different. The first catheter, which went in my urethra, felt like it was the size of a Pringles can. Next came the cylinder, which I am sure was actually a coffee can. Last was the catheter in my rectum, and it felt like it was the size of a can of asparagus, coated in glass shards. You may giggle now, I don't mind. It's over and I am not dwelling on it, just sharing the experience. The purpose of all off these "invasions" was to target the radiation. The catheters were used to fill me with a dye that would show up as a contrast on the x-ray. The good news is that when I go back for my actual treatments, all I have to contend with is the cylinder. I will be mentally prepared for it so I don't expect it to be too bad. Also, because these are site specific, I should not have much in the way of side effects. Here's hoping.

I may add to this later, but for now, it's a short post. I think I need a nap.

Popcorn and Laser Tattoo Removal

As of today, I have had a total of 18 radiation treatments. I have 7 external treatments and 3 internal treatments left before I get a 3 week break. After that break chemo will start. I have mixed feelings about chemo. On one hand, I know that this journey is coming to an end. On the other, it's another unknown. No one can tell me exactly how my body will react to the chemo. It's such a unique experience for each person. I have talked to several women in my support group and each one's story of chemo was different. Some were actually too tired to eat and some had no problems at all and were actually able to keep working. The only thing that I have been told that I can expect with almost 100% certainty is that I will loose my hair. Okay, I am not too worried about that part. Hell I have already cut my hair very short in anticipation of that one. I am actually excited to see what I look like bald and I can't lie, the idea of not having to shave for several months is not unpleasant. Before I started radiation, I was given a 15 minute video that showed me what the process was. I saw the machine that administers the radiation and the table that I would be on. I saw a woman lie down on the table and the machine move around her. It took much of the anxiety away that I was feeling from an unknown procedure. What this video did not do was keep my mind from wandering during treatment.

I mentioned before one of my first thoughts was what if the beam, in my mind it's a laser, misfires, would it shoot me across the room and into the wall? More recently, my cerebral diarrhea has turned into a way to entertain the techs that set up my room. I asked Tim, the tech guy, if I fart while the beam is on, will it create some sort of explosion or fireball, like when you light a fart? Apparently, no one has had this thought before or has admitted to it. I was informed the next day that he giggled all day about that one. My next thought was about popcorn. Now it might be that I was thinking about popcorn because I am on a low fiber diet and have been instructed not to eat that tasty microwaveable treat. I should mention that for the 10 or 15 minutes that you have to be completely still during treatment, there isn't much else to do but let your mind wander. I tried to doze off, but since the beam sounds much like a dental drill, I had some very odd images of dental procedures and those are never pleasant so I have opted to just let my mind wander and see what comes of it. Anyway, I asked Tim if I placed a bag of popcorn on my butt right before treatment, would we all have a tasty snack at the end of my treatment that day. Again, he laughed at me and explained that they tried it before and the patient complained of oil burns on their ass and who would want to eat ass popcorn? I had to agree with him on that one. EWWW. I decided to move on to a money making enterprise. I thought, what if we would combine the radiation beam with a laser for tattoo removal? One position of the treatment beam is directed at my back so why not? I figure treat cancer and remove a tattoo all at once. I think Tim has now called in a referral for a psychological evaluation on me. I guess it's a good thing that I have not told him about my stand-up routine that I am working on while not thinking about exploding gas and popcorn.

Most days I don't feel too bad. Fatigue, however, is a constant friend of mine. I sleep about 9 to 10 hours a night and usually take a couple of two hour naps during the day. In all I sleep anywhere from 13 to 16 hours a day. I don't spend all day in bed though. Ok, I did spend all day in bed a few days ago. I just could not stay awake. I have had a few days where I had little or no appetite. On those days I mainly drink protein shakes and eat something like yogurt or pudding. I drink plenty of water because the last thing I need is to get dehydrated. I have discovered sugar free kool-aid in the single dose packets. I use those most of the time. I figure water with a little drink mix is still water, right? The other side effect that has been a fairly constant companion is the diarrhea. Thankfully I have an amazing radiology team. They have put me on a low fiber low fat diet and given me a prescription for something stronger than the OTC stuff I was taking. Until next time my friends.

Ports and Treatment

So it’s been almost a week since my port was placed in my chest. All I can say is I feel sorry for all those alien abductees who have had to deal with this! When your muscles and skin are moved around to make a “pocket” for a medical device to be inserted into, said muscles and skin are not happy! I should clarify that I am not in pain, just really uncomfortable. Anyone who has ever had major surgery or a chronic pain issue knows that there is a difference between the two. Being in pain is like “This hurts so much I really would rather just die right now than experience this” and being uncomfortable is like “I am aware of this sensation and I would prefer that it stops”. I never posted the previous paragraph, but I would hate to deprive anyone of my cleverness so I will include it with my current post.

 I have now had 8 of my 25 radiation treatments. The only side effects I have experienced so far are some slight fatigue, joint pain and some diarrhea. I have not received any x-ray vision, mind reading or telepathy powers. I am very disappointed. Apparently, those are not expected but when I asked about these side effects I was promised a cape at the end of my treatment.

 The treatments themselves are short and painless. I am face down on a table and the machine moves around me. It sometimes makes a noise like a dental drill, which is a little disconcerting. It does not feel like one, so I am grateful for that! I don’t feel anything at all. Sometimes when the machine is zapping me, I envision a white laser penetrating my skin and destroying any remaining cancer in my body. I believe that positive imagery can help. However, sometimes the “image” takes off and instead of the laser harmlessly penetrating my skin and only going after the cancer, I see the laser hitting my hip and blowing me right off the table and slamming me into the opposite wall. I may need to ask about some kind of therapy for that.

 I received a call earlier in the week from an HR representative from my employer. Since my treatment will keep me out of work longer than one calendar year and they did not have a position they could hold for me that long they decided to terminate me. Yeah, I was fired. At first, I was so shocked and hurt and angry but I am over it now. Apparently, they were going to do it a few weeks ago but they wanted me to have my insurance for as close to 30 days as they could give me. I am grateful for that. I have much to do now; filing for disability, unemployment, COBRA and I think there is more but it is escaping me at the moment. I must admit, the decision to terminate me was not a surprise, just the timing. I knew that I would get this phone call, but I expected it later this year, when we were closer to that actual one year date. I think that’s much of why I had such a range of emotion with that. I want to say, “how dare you fire me, I have CANCER!” but I understand why they have to make that decision. I mean, what employer wants to have to pay an employee for doing nothing? If you know of one, please let me know where I can forward my resume.

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.