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.