Sunday, September 23, 2007

Impatient With Being Patient

I want to start by apologizing for going so long without writing a post. I have no excuses except being tired and lazy and a little melancholy this week.

Even though in my last post, said that it may take a while for the effects of the chemo and radiation to wear off, in my heart, I think I believed that I should be totally done with all of that by now. Because the steroids make me a crazy, emotional mess, I figured that since I only had a half dose of chemo this week, that I could stop the steroids earlier than the 3 days after chemo that I normally am supposed to take them. Well, I'm not sure if it was stopping the steroids early, or if it was some weird cumulative effect, but yesterday and the day before, I had a weird, shakey feeling for most of the day. It felt kind of like being nauseated, except not just in my stomach. I felt wobbly in my stomach, legs and arms. There were moments when my hands and arms were visibly shaking as well, but only for short bursts at a time. I went ahead and took one of the steroids last night and again today. I feel better today, but still a little shakey/wobbly when I do too much (like paint the ceiling in the office). I almost recycled my dinner a couple of times, but then I was okay after sitting quietly in the garden killing mosquitos for a half hour or so.

I'm going pretty stir crazy here. I'm not working and not taking classes. Mostly, I'm sitting on my butt doing nothing in between doctor's appointments. Yesterday, I went grocery shopping and was completely exhausted by the time I was done. It's weird, I get so tired so fast. When I get too tired, I get nauseated. This last chemo was only a half dose because I only had 3 radiation treatments this (last) week rather than 5 like usual. Of course, I tried to be an almost normal person and I'm exhausted.

Of course, I am also still experiencing what is (not so fondly) refered to as "chemo brain". That is basically when even the simplest words and concepts are unreachable at times. Like yesterday, I was trying to explain something to Ryan. I couldn't think of the words I needed (I think they were "ladder", and "garage"). Luckily, he figured out what I was saying as easily as me saying "um, you know, if you need a ...... um, thing..... it's um, in the aaahhhh" and pointing toward the garage. For someone who talks a lot, not having words is frustrating. (I can't remember if that was the particular conversation where my words quit and his brain kicked in, but it was near the same time as that conversation.)

It may sound crazy, but I'm missing work. I have enjoyed working in my garden, but again, I've had to do it in small incriments. Luckily, I have a bench out there to sit on when I start getting nauseated or winded. This is so weird. I've never felt weak physically like this before in my life. I don't like it at all. Some of the people I've met through the hours waiting in waiting rooms or sitting in the infusion rooms have had such obvious bad effects, liver problems, skin burns & peeling, extreme pain. Comparitively, my side effects are so minimal that I feel like I should be fine doing and acting and working like a regular person (or at least like myself). I feel almost guilty, but I know that I have to give my body a chance to heal. I just get impatient with the process. I feel like a wooss (I have no idea how to spell that word.).

Wednesday, September 19, 2007

Light Around the Corner

Today was my last chemo treatment and tomorrow is my last radiation. Yeah!!!!!!!

Now, I have a few weeks to let the effects of the chemo and radiation wear off before they do surgery. My hysterectamy is scheduled for October 23. I assume the only thing that will change that is if my pre-op testing doesn't go well. I've got an appointment at U of M on October 8 to go over all that stuff and probably do the testing that day as well.

I feel like I can finally see the light at the end of this twisted tunnel that I've been in. The two parts of my treatment that scared me most will be over this week. The surgery is around the corner. I view this journey as halfway over, but the transforming effects on my life have set me in some ways on an unending branch of self reflection, regret and self discovery that I wouldn't otherwise have tread.

One question that I keep getting is "when will you know if the chemo and radiation are working?" The answer is that I'm not sure. I believe that I'll know once the pathology report is in, after my surgery. That is when I should also know for sure if I have cervical cancer or uterine cancer. My gut instinct tells me that I probably have uterine cancer, but that it has not progressed very far and that once all this is done, I'll be done with it.

Hopefully, my instincts are correct (or that I am overreacting and it may be just cervical after all). Usually my instincts are right on. But, being an Aries, my emotions and instincts are usually tempered by my intellect as well. So, I am maintaining hope with an edge of skepticism until I hear the all clear from the medical powers that be.

Sunday, September 16, 2007

Almost to the Next Turn in the Road

So, Wednesday, I went to chemo as usual. While getting my liquid boost of juice, I was talking to the head nurse and I told her that I only have a couple more radiation treatments left. She said then that should be my last chemo. Well, I went to the chemo doc on Friday and he said that he wants me to have one more half dose treatment on Tuesday. So, even though my internal radiation is done, I have Monday, Tuesday and Wednesday for external and Tuesday for chemo. The half dose should not leave me with as bad of a reaction as the full doses do (although, my side effects have been minimal compared to some that I have heard about).

Then, I am done with doctors for two whole weeks. (Although I'm supposed to have a follow-up with my GP about something or other, but I'm thinking why bother until all this blows over. I think it has to do with my blood sugars which have been high due to the chemo and steroids associated with it. I don't really want to find out what my 3 month average has been when for much of that time, I know that it has been artificially inflated because of the chemo. I want to give the effects more time to wear off before I do that test. I don't know, maybe I'll go, but do I really want to find out something else is even more wrong than I thought?) I go back to U of M on October 8 for a pre-surgery consult. I assume they will get more bloodwork, and to the usual pre-surgery stuff on that day. The hysterectamy should be October 23, assuming nothing else goes hinky.

Between my cancer treatments and Deb's health heading even further south, we are at one doctor or another between us, pretty much every day of the weekday these days. So, we are planning on taking a trip up north for a few days (maybe up to a week) just to get away. My last apointment with my chemo doc is on September 28 in the morning. We are hoping to leave right after that. She will take some time off of getting her infusions and we will just go relax, visit family and listen to the wind blow in the changing leaves.

The day of my first ever chemo treatment, I started to get hot flashes. Only generally one or two that day.

This time, I went to chemo, did a few things around the house, got nauseated (threw up a little, not much), ate dinner and then went to the Whiting Center to see a show called "Truth in Translation" about the Truth and Reconcilliation Commission Process in South Africa after Apeirteid was abolished. (This was a very powerful experience for me, I'll write about it tomorrow or the next day since I already took my sleeping pill and I'm starting to fade.) Anyway, I was sitting in Whiting, dripping in sweat. I finally turned to my friend, John, whom I was sitting next to, and I asked him if it is hot or if I'm having a hot flash. He said it must be a hot flash. Well, that was three days ago, and I'm still running outside to cool off in that early fall chill that is happening because my internal thermometer has done gone crazy. I think menepause may have finally hit between the chemo and the last of the internal radiation. Whew.

Sorry I've been remiss on keeping up the blog, I've got a lot written in my head, just not on the computer. I'll try to catch up soon.:)

Monday, September 10, 2007

Fried Eggs

This morning was my 4th internal radiation treatment. Only 2 more internal and 3 external to go before the healing begins so that I can have my hysterectamy.

Today, I managed the pain a little differently. I took 800mg of ibuprophine beforehand and had them give me half the amount of morphine then they did last week. The doctor did a much better job today of getting the hardware in place. He didn't catch any skin at all, so I didn't have to yell at him. I did have a lot of cramping, but that is to be expected and it stayed at a managable level. Had a slight headache this time, but nothing too major.

I don't know if it's because I had a lower level of narcotic in my bloodstream or not, but when the radiation was activated, I could feel it more than the other times. I'm not sure how to describe the sensation. Before, it just felt like a little bit of a vibration as the "seeds" (metal chain with beads that are radioactive) were fed into my cervix. This time, it felt warm, bordering on hot for a few seconds at a time. There were also moments where it almost felt like I was wetting myself (which, with a catheter in can't be done). It also at times felt in my privates almost like when you put your tongue on a 9 volt battery, but not as intense. None of these things exactly describe what it felt like, but hopefully, it at least gives a suggestion of it. Like I said, it felt very different today, I made an even more determined effort to be more aware of what was happening. As I was laying there feeling all this stuff, I was moving words and ideas through my mind to see if I could match up words with the sensations, but as I said, nothing matched exactly even during the experience. I also was able to relax my muscles better so that when the doc hooked up the erector set, it was easier to place it.

Because of all of the irritation from the treatments, I appear to have some sort of infection with itching, burning and discharge. I think it's a yeast infection. The doctor gave me a prescription for it. I'll see if it works. Whatever it is, it's really annoying.

After today's radiation, I felt totally sapped out. For the short 3 mile ride home, I had a hard time staying awake. It amazed me how exhausted I was. I came home and slept for about 4 hours straight, sleeping through most of the residual cramping that occurs after each treatment.

I go back tomorrow for my 5th internal treatment, then Thursday for my last one. My last series of external radiation begins on Friday. I guess they are going to be using a similar field to the first 20 external treatments, but focusing more on the lymph nodes this time, to make sure any cancer in there is fried if there is any.

The nurse asked if I had still been having periods when this whole thing began. I explained that I was, and that during the external radiation, it stopped then restarted a week and a half later, and now seems to be done. I told her I figure my eggs are pretty well fried by now. I know that sounds kind of callous, but if I don't joke about it, the mourning of not being a mom may come back again, so that is part of my way of coping with that. There is no turning back now.

I am finding lately that my thought processes are much slower than normal. I feel like when I am talking to people, like my words are coming slower and I'm having trouble finding the right words sometimes. The technical word for this is "chemo brain". This slowness in my brain also makes it hard for me to read much and comprehend what I see in print. I get this from only having the chemo once a week. I can't imagine how out of it I would be if I had chemo more than one day of chemo a week like so many of the others that I have met. I'm not sure how long it takes for chemo brain to wear off once the treatments are done. I know that there doesn't seem to be any letting up of it between, so I figure it has to be at least a few weeks. I even felt it for those couple of weeks that I didn't have chemo because of the PICC infection.

Wednesday, September 5, 2007

Turns of Conversation Help to Navigate the Fear and Boredom

At the chemo clinic, there are several seating areas. There is a fairly large, main area with 6 or 7 plastic/metal reclining seats and regular padded chairs with arms on them dispursed in between. There is an additional row of 4 regular armed chairs in this room also. The main nurses station is in that room as well. Then, off to the side, there is a hallway with a bunch more of the chairs with arms lined up for people getting blood draws and as additional waiting for chemo. Off this hallway, there are a couple of small treatment rooms with 3 of the reclining chairs and 3 regular chairs each. There is also a "nourishment room" where patients can get juice, crackers and water. (There is a microwave in there in case people bring something more substantial and want it heated up.) There is another seating area that is somewhere between the small and large one in size.

I like to sit in the larger area. It is less intimate, but I get to talk to more people there. (Me, talk, NO WAY!! I'm quiet as a mouse and never talk to strangers!! It must really be Deb who likes to talk nope, nope, not me no way no how, never, not a peep...) Usually, in this larger space, there is some lively conversation going on. The small rooms are good too, but you aren't always assured good conversation because of the limited space for varied personalities to fit. I bring a book to read during the 4-5 hour infusion, but with the cocktail of meds on board, sometimes it is hard for me to concentrate on written words. Also, my vision weirds out from my blood sugar elevating due to the steroids. So actually, when reading is just too difficult, conversation helps to pass the time. It's really not just an excuse to hear myself talk. Sitting and staring or meditating is good for a while, but not as an all day activity.

The conversations are always interesting and I really love to hear other people's stories of their lives and their own experiences with cancer. I'm not the type of person to seek out one of those cancer support groups, but sometimes hearing someone else's story and helping each other find solutions to common problems like nausea, fear management, transportation issues, and bad veins helps to put one's own situation into perspective. Each time I meet someone new or hear someone's story for the first time, my gratitude is renewed for the miracle of them finding my cancer early, having an incredible support system, having good insurance and a car, being able to rant in my journal, with those I love and on this blog.

Today, our conversation ranged from interesting tomato varieties to dogs to inoperable cancers, chemo effects, disappearing spots in the lung and internal radiation. I was able to help a woman deal with the fears related to the unknown in regards to the internal radiation that she was due to start this afternoon. All I did for her was to describe step by step and feeling by feeling what I experienced yesterday in order to demystify the experience for her. She has a different radiation doc than me, but it sounds like my experience of not being told ahead of time what to expect is not out of the ordinary.

What I don't understand is why doctors seem to think that ignorance of a procedure is the best way to proceed with patients. I don't understand how they are so totally clueless about their patients' basic human need to know what to expect in order to better deal wtih the situation. Now, I'm not talking about necessarily telling them in gory detail every little thing that can go wrong at every step of the way. (Quite the contrary, an average experience description would be very helpful in order to allay fears.) I'm talking about taking an extra 5 minutes to explain the basic procedure, then attentively listening and encouraging their questions. Not everyone has a partner like Deb who knows exactly what questions to ask when and in medical terms which she later does an awesome job of translating into English for me. And, not everyone obsesses over their questions the way I do, usually keeping the majority of them in the forefront of mybrain simply because of obsessive neurotic fears. Most people need a minute to process information in order to know the correct questions to ask. Too often, Doctors are busy looking at their watches or anticipating what they think your questions and fears are instead of listening to what they REALLY ARE. Instead of empowering their patients with the knowledge that they need and want, they desempower them by feeding them what they THINK their patients want to hear.

Hope walks a precarious line between seeking knowledge and being fed clean, pat answers. It is up to the patient and the doctor to find that line together.

Tuesday, September 4, 2007

Matchbox Cars and Erector Sets Are Not So Fun

This morning was my first internal radiation treatment. Five more to go.

It got started late due to the Doctor returning late from his vacation, but once it did get started, it wasn't as bad as I'd imagined or heard.

The radiation itself didn't hurt, I just felt some vibrating of a cable on and off during the treatment. The treatment itself only took 397 seconds. The preparation before that took over an hour.

First, I got 10 mg of Morphine. (Once again, I marvel at how morphine doesn't do a darn thing to stop pain. It just seems to take the edge off the worst of the anxiety. I can't for the life of me figure out why someone would find it addictive. For me it felt similar to about 2 shots of bourbon.) The nurse allowed Deb to be the one to access my port for the Morphine. She did such a good job that I didn't even feel it, except a slight pressure.

Then, I had a catheter inserted in order to ensure that my bladder stayed empty throughout the procedure. It stung a little, but not bad. The other thing that having the catheter did was that it allowed them to see exactly where my bladder was on the CT scan used to check the positioning of all the hardware that they rigged me up with.

After the nurse inserted the catheter, the doctor came in.

The doctor began by inserting a speculum without warning or any sense of how a woman's body can adapt to prevent pain to itself. Needless to say, even that simple procedure involved some measure of pain. (If anyone asks, I think if the doc was either a woman or a man who has had prostate problems, this procedure would not have involved much pain at all, instead of a painful, frustrating series of invasions slightly mitigated by morphine.) After the speculum, I felt a couple of other things go inside, involving much cramping and pressure. Evidently, I kept tightening my muscles because he kept telling me to keep my hips on the table and not to lift them and to relax. Well, that all was pretty unrealistic to expect. He did allow me a few minutes to relax my muscles at one point because he finally realized (after I said my legs were shaking from tightening up so much) that no amount of verbal coaxing was going to get me to relax. Finally, after a few minutes, I was ready to go on.

I'm not sure what everything looked like, or what it was called, but later, Deb described it as looking like an "erector set" or like a "microphone stand" coming out from between my legs. (Deb was allowed to watch the procedure because she is a nurse and she knows how to stay out of the way.)

Once the erector set was in place, they attached it to a board on which they had me placed, so that none of the equipment or my pelvis could move. Then they took x-rays to check the placement and transfered me to a gurney and took me to the CT scanner. Now, let me say this about that ride: humiliation and pain. Humiliating because, here I was unable to move in any meaningful way (I could move my feet and my arms, legs and head, but not really my torso at all), with an erector set sticking out from between my legs, lightly covered with a sheet and being wheeled out into the hallway in front of everyone in the waiting room and all the hallways. Painful because each time the gurney jiggled, the erector set was jiggled and everything inside of me cramped up even worse. (Who woulda thought that jostling my shoulder with the armrail would create pain in my privates!) Once the CT was finally done, the CT tech zoomed the bed part out of the doghnut part of the CT machine and it was kind of like taking a spider with it's legs tied up, supergluing it on its back to the roof of a matchbox car, with painful equipment strategically placed inside it, then pushing the matchbox car really hard until it smashed into a wall to stop. I swore at the tech and told her that hurt. It was very painful because when the bed part bashed against the automatic stop (instead of her guiding it to an easy stop), the entire erector set felt like it was jammed even further inside of my uterus. It took a good ten minutes for that particular pain to ease up at all, in addition to the cramping and pressure I was already experiencing.

The worst part of the whole thing was that the Doctor seems to have absolutely no idea of how painful it can be for a woman to have large foreign objects....Anyway, he has absolutely no finesse. If he had at least given me a verbal warning or description of what he was doing, I wouldn't have tensed up my muscles, which made his job more difficult. Also, if he had moved slower instead of cramming the whachumacaullits into place, my body could have adjusted easier and it wouldn't have been as painful. Then, when he snapped two of the different whachamucaulits together, he caught either a piece of my skin or a hair in the way. It took a few minutes before he finally listened to what I was saying and made sure that my skin was out of the vice. (I didn't think of it until talking to a friend later, but I kind of wish I had thought to tell him that if he wanted to know what it felt like, I'd be glad to pinch his foreskin between two of my ragged fingernails so that he could understand.)

So, over all, the experience wasn't nearly as bad as I had expected. And I only have to go through it five more times.