August 2011 archive
Mike and I took the dogs up to the Park Silly Sunday market for a couple of hours a week ago.
Good golly (Utah swear words for those outside of Utah, we also use “gosh” in place of golly), cancer treatment is no short journey. I commented about “7 months ago” I was healthy in my last blog post, but realized today that I have been in cancer treatment for 9 months instead. Boy how time flies when you are having fun? I do have a deep respect for those that don’t see an end in sight in their treatment, I count days on a calendar, but some are counting more.
I am now more than halfway done with radiation. The less I wear the sparkly top, the better my skin has been behaving so far. I am a bit sore in my armpit and I am pink, but I have learned better what to wear and how to irritate my neck less. I seem to have the most energy at the beginning of the week and by Friday I am one big lump of “I want a nap.” I have spent most of the last couple of weekends sleeping. It seems like a waste, but at the same time I feel a bit more functional during the week when I rest more on the weekends. I have been curling up on the couch with Mike watching Star Trek Next Generation on Netflix (yes, we do lead a wild and crazy existence, don’t be too jealous).
This week I managed to switch being the last appointment of the day to being the first appointment of the day. I have to get up earlier, but this way I feel a bit less pressure to get everything done at work early and can spend most of the day in the office (and play less catch up at night). This seems to be working better for me so far as I get out of there much faster as the hospital isn’t behind yet, so I spend less time there. This does mean I have to put the “goop” on at the hospital after they radiate me (Aquaphor Healing Ointment is what they have me goop up on twice a day). I managed to get it all over my shirt today, so I was feeling pretty fantastically messy.
My little brother Dereck brought me more flowers when he came to visit. So pretty.
Ok, now boys, cover your ears/eyes. The end of menopause for me has so far meant over a full month constant reverse of the whole thing. EEEEEEEEEEEE!!!! Aunt Flow refuses to leave town no matter how much I beg. I guess it can be normal for your body to take awhile to figure out how to re-regulate itself, but I worry sometimes about the amount of hormones involved in what is going on right now.
I no longer feel like I can say “I have cancer,” these days I tend to refer to my situation as “being in treatment for cancer,” so maybe I will be comfortable with being a survivor next? Who knows… I am trying to learn to stress less about “the cancer,” which seems to be working, but I think I may be refocusing that stress on work. I tend to run on stress though, I am a stress machine. I am learning to eat healthier, exercise more, but now I need to figure out how to better control my stress.
Checking off the days.
Each radiation appointment feels like I am putting one foot in front of the next and moving forward, but slowly. Driving up to the hospital every day gets old pretty fast, although I shouldn’t complain because there are many that drive much further than I do to the hospital. I guess a factor in it is that being at the hospital reminds you that maybe you aren’t well. I have a calendar at work that I check off each day after I have completed radiation, I need to see the boxes behind me. Progress tastes good.
My updates: My December surgery has been moved to December 27 instead of December 20. My surgeon had to be away for a study he is involved in, so he had to change the date on me. My Radiation Oncologist has decided to switch me from every other day using the chain mail bolus (which pulls the radiation to the skin) to every three days to cut back on the redness and inflammation that is now very visible.
I made a joke to a coworker the other day about “remember when I was healthy 7 months ago.” So interesting that you can feel healthy and great and have something lurking in your body, spreading out and taking over, and you feel fine! Breast cancer luckily tends to involve a lump or some visible sign that something is going on. Not all cancers are like that. It is good that there is screening for many cancers, early screening means less treatment and better possibilities for the patient.
I think I am now a bit of a cynic about the “let’s cure cancer” bandwagon. I described cancer to someone as cells mutating incorrectly and then causing other cells to do the same. Considering the variety of cells in your body that can all mutate into one cancer cell or another, a cure for cancer as a whole seems like an amazing task to take on. Treatment is improving, so are detection technologies. I don’t think that anyone out there is necessarily “unaware” of breast cancer, instead I think we are all overcome with the “it won’t happen to me” phenomenon. When I found the lump in my breast I wasn’t in a huge hurry to get it checked, my response was that it was a lump and that I was just too young for it to be more. If my friends hadn’t pushed me to get it checked I probably would have put it off for at least a few more months.
My thoughts these days are more concerned with the life ahead of me rather than the life behind me. I can’t change that I had cancer. A bit of innocence has been stripped away from me this year going through the true reality of pain, sickness and suffering that I hope to never repeat. I don’t ever want anyone I know and love go through anything terrible, whether it be cancer, pain, or sickness of any kind. I watch my mother’s challenges with her medical issues and I am reminded that life just never wants to play fair for any of us, but my mom raised me telling me that life just isn’t fair.
Life is what you make of the hand you have been dealt and the choices you make regarding which card you want to play. I want to play a good card. I have too much life in front of me to hold on too closely to what is behind me.
We are opening a disco this Friday at Huntsman Cancer Institute. Every other day of radiation I get to wear a “chain mail bolus” as they call it. The radiation therapist calls it the “fabulous top” and today was “fabulous top Friday” as she calls it (this would be the same one that offered to sign her artwork). I am one of their last appointments of the day, so they tend to be giddy when I come in, very careful, but giddy.
It is a sparkly top that changes the depth of the radiation to bring it closer to the skin. The bottom of the machine has a couple of stickers on it, one of a cat, one of a dog and some stars. I am not sure who put them there and why they are there, but I stare at them every time I come in. The machine is rotated around me into three different positions and metal rods on the inside open and close to change the window that the beam comes out. I get a total of 5 zaps.
Photos as promised:
The lean mean radiation beam machine.
The sparkly top on what appears to be a gigantic fake boob. This is the machine at the angle that attempts to wack my funny bone.
This is how the room actually is when they turn on the machine (it is dark) and you can see the lasers that they use to line me up.
From our trip this weekend.
I really like to think of myself as a go-getter. I want to be first in lots of things, but not radiation side effects. Three days after my first treatment the crook of my neck hurt after I wore an ultra baggy shirt that had a collar (I figured baggy would be good, but I guess collar is bad). Wait a minute… three days? They told me three weeks and I might start to show a little pink on the skin.
I asked the radiation therapists if some scratchy skin after three days is unusual. Their response was the typical response that you get “everyone is different.” I am not kidding myself, I have baby skin. I go in the sun for five minutes without sunscreen I burn – I kind of figured my skin is going to get a bit fried in this process. Three days?
Friday I was exhausted. Not sort of exhausted, very exhausted. I left work early to pack to go camping and instead of packing I crawled into bed and slept until it was time to go to my radiation appointment. Mike came home from work and got stuck pulling the boat out on his own and getting the packing done while I was stuck up at the hospital. I am not sure if I can blame radiation for being so tired or just trying to keep up with work, driving to Huntsman everyday and actually maintaining a bit more of a social life.
I spent the weekend thinking happy thoughts. My skin does not hurt, there is no way I am sore and tired from radiation yet. I am full of energy. Butterflies, rainbows, sunshine, puppies… I was so tired… I wore three layers of shirts to protect every possible way my skin could be possibly be exposed to sun (and put sunscreen on at least four times). We went out on the boat for two hours and I had to take a nap. Mike kept fretting about me. We went four-wheeling and I was beat after less than an hour. I wouldn’t think this stuff would be so much work! This is also the first time since December that I tried to pack so much fun into one day. I slept most of the drive home on Sunday and slept more when we got home. I think I forget sometimes how much my body has been through this year.
As of today you can officially see a bit of a pink outline of where I am being radiated, it barely shows up in a photo so I am not posting a photo. My radiation oncologist told me that some people can get pink early and not progress beyond that , or they can get the burns with the blisters, but to keep an eye on it and wait. When I saw her today I also let her know I now had a bit of a sore throat (my esophagus happens to just barely be on the edge of my radiation zone).
I promise to take some pictures of radiation for my next post. I keep being in such a hurry to get in and out of there. I am so ready to be done with cancer treatment (although I was ready to be done before it started, so that isn’t saying much! Ha!).
UPDATE: They moved the radiation area near my neck over a teensy bit to try and keep my esophagus out of it. So hopefully no more sore throat!
Hair, Eyelashes and Eyebrows, Oh My!
Day 3 down (which my father says that means I am 10% done, he is a CFO/accountant type, numbers do tend to be his way of life). Monday I had the first appointment at 9:30 AM, it was the only time they could squeeze me in that day. Tuesday started the 4:15 PM appointment, which is mine until I am done with treatment – which I guess they tack on a few extra days in the schedule just in case my doctor feels like tacking on an extra few treatments near the end (kind of sounds like “you are done! Just kidding!!!!”). It is more likely in case I miss a day or two. My radiation oncologist is off on vacation at the moment, all I can say is that I may be a teensy bit jealous.
It doesn’t hurt during treatment and treatment takes 10-15 minutes. They line you up, the machine makes buzzing noises, they line you up again, more buzzing noises and before you know it you are done.
Driving to Huntsman everyday sort of brings back that “oh yeah… cancer…” thing. After surgery getting healed up and being super busy at work I sort of had a few moments where I forgot about it. I don’t feel like I can say I had cancer, I don’t feel like I can say I have cancer, I am in what I will call “cancer limbo.” It happened, it doesn’t feel gone, I still don’t feel like I am a survivor – so right now I am just “Mandi with a fuzzy head and some drawings on her booby.”
Radiation treatment is a bit different from chemo. The Huntsman Cancer Institute seems to separate the metastatic patients from everyone else in chemo treatment (I can imagine it is for good reasons, I can’t imagine if I had stage 4 and sat next to someone complaining about stage 1 chemo I would like it. I am also not sure that I could look at someone in the eyes with stage 4, when I started chemo, without having a panic attack). Although they never said that is how they do it, when they tell you your chemo day can be Tuesday or Friday and you know they do infusions 6 days a week… I was hanging out somewhere in the middle stages anyway, so I am not sure what reality I live in other than my own (which is a place full of sunshine, rainbows and REALLY cute puppies).
I am art, or something…
Anyway, a lot of people in the radiation treatment waiting room aren’t early stage (yeah… booo…). I still can’t shut up when I am waiting for treatment, so I like to hang around in my hospital gown and talk shop. They do separate the girls from the boys (kind of like kindergarten?). Typically I am surrounded by the family members of someone getting radiation for metastatic cancer. If no one is yappy I play the “what cancer do they have” game based on if they are wearing a gown or not. So far I still feel like the youngest person around (although I know there are younger patients).
My suspicions about my radiation zone were true. They are zapping me up the shoulder and hitting my lower neck (and trying not to give me a sore throat, as they say when they make me push my head over more). I took a picture of the marks that they made at the top today (the radiation therapist told me today’s lucky color was green, which I told her I was a bit disappointed about, due to my favorite color being purple). They use this line to line up the radiation to make sure they are hitting below and ABOVE the line. They also circle all of my tattoos.
I am back to exercising every morning again. Exercise is supposed to battle fatigue for chemo and radiation, now that I am healed I am back on my elliptical every morning. I probably should go to work earlier, but I like getting my sleep and working out in the morning. A couple of hours of quiet time working from home in the evening is working out so far.
My hair keeps getting longer, and it is still a lovely shade of “bottle blonde to be.” I haven’t given up on going back to blonde when the time comes. I have eyelashes, eyebrows and wrinkles that I should have Photoshopped out of the photo (I need to work on doctoring my photos, I know how, I guess I just prefer to be honest, lame). Just two months ago I took my bald photos, now I am a fuzz machine (which also earns me the opportunity to have friends and family rub my head, it does look and feel really soft though). Personally I prefer how I look with eyelashes.
Fear Nothing. Livestrong. Also note – my arm is hairy again.
I believe I may have to bring my radiation oncology team at Huntsman some coloring books. They sure like to color! My “dry run” today was brought to you by the colors green and purple. They drew all over my chest and neck while they practiced my radiation treatment coordinates for next week (the coordinates are the numerical points and angles at which they point the beams of radiation at you). I learned why they do a dry run today, if they had left the machine to its own devices it would have wacked right into my elbow (and funny bone) on one of the angles.
The would run it to the coordinate and then take an x-ray (no lead apron, I guess at this point they figure you are getting so much radiation who cares about protecting your other parts eh?). The machine itself was kind of creepy. I watched as metal rods on the inside would slide around and create odd sized holes before they took the x-ray (I may have to read up a bit more on how this all works). From my understanding the rays they use for radiation are the same as an x-ray, but at a much higher dose.
After drawing all over me, radiation tech offered to sign her work (I think I am going to like her).
What I was not excited to see was what I think is my expected area of radiation. It is big. As in, much bigger than I expected (if the marks prove to be the expected radiation area, they are in fact going up a bit of a way on my neck and shoulder). I didn’t see the marks until after I had left the room, so I didn’t get a chance to ask about them. I am going to try to remember to ask on Monday when I go in for my first zippity zap. I had expected to see something closer to my aunt’s radiation area, but my radiation oncologist had mentioned getting the lymph nodes near my neck and shoulder – so it looks like that really is what they are probably doing (sucks when what the doctor says they will do, turns out what they actually do, right?).
Still covered in markings I ran over to the other hospital to meet up with my plastic surgeon. He poked his head in the room with a worried look and asked why I was there (which is a bit funny if you think about it, because what doctor asks you why you are there?). Honestly, I am 99% sure he was thinking I was there because of ANOTHER complication (I have been so good at those this year). I explained I was in because the nurse wanted him to check me out before I starting radiation – you should have seen the look of relief on his face. He came in and checked me out, I explained that the nurse had been worried that I had a bit of fluid in there, he told me I don’t now (and showed me how to check, I honestly can’t tell by touch. Parts of the breast expander are squishy, other parts are not). He told me that I was healed up nicely and asked me if it felt great to finally be healed. I told him it was awesome! He then proceeded to laugh at me and ask me what was all over my neck (I had hurried over because I was running late and washed off most of the marker with a baby wipe, but had apparently missed a big smudge on my neck).
He seemed a bit disappointed that I had to stop expanding and making the two sides even for radiation (I will start expanding again when I am done with radiation, but I had to start radiation if I wanted to do my final surgery before the end of the year). We then discussed when I needed to come see him next so that we could pick out my implants for what should be my final surgery in December. He told me to come 2 weeks before surgery. No fluid in there means that I could stop antibiotics, which I have been on almost much every day since my mastectomy at the end of January. Woohoo!!!
The hair on my head (and everywhere else seems to be growing at an astronomical pace. It seriously looks longer everyday. Please note hairy arm picture listed above.