So I have been trying to avoid the topic of side effects because I kept hoping they would just go away, turns out I am more likely suffering from issues with the Metformin (or some really crazy placebo effect, but realistically, I don’t think I got the placebo). I am getting crazy dizzy spells that make me feel disoriented and out of it. I also generally haven’t felt well, tired, cranky, nausea – just overall ick. Which has been driving me crazy because I am supposed to be feeling better rather than feeling worse! After fighting my cold for a week my body decided Thursday afternoon that it had had it. The room was spinning at work so I went home to lay down. I felt better after a nap, but when I woke up the next morning I was dizzy and exhausted and just didn’t feel right.
I gave in and called the nurse (I feel like a complainer because the only time I call is when I am having problems, but I guess it would be strange to just call to say hello and that everything is dandy). I had also had a sharp pain in my upper arm on the inside where my lymph nodes are which didn’t have me super excited. I wore my lymphedema sleeve this week in case it was lymphedema (and the pressure from the sleeve helped the pain). It turned out that the pain is an axillary web (one of my blog friends had this happen after her mastectomy, so I had seen it, but I guess radiation can also get it going). Stretching and massaging the area that hurts is supposed to get it to eventually work itself out.
They are having me stop Tamoxifen for two weeks (which scared the crap out of me), but they said that Tamoxifen is something that you have to take for the long haul and because I am in the study I can mess up the study if I stop taking the Metformin/placebo. So we are trying to isolate what is making me feel crappy (on top of being sick). The Metformin or the Tamoxifen. Apparently all of the side effects I described are not normal for Tamoxifen, and when I described them to my friend who has type 1 diabetes – they all sound like side effects that come with unregulated blood sugar (interesting because I thought Metformin regulates it, but maybe if you don’t need it, it makes it wacky).
We had bought tickets to the Real Salt Lake soccer game Saturday and I decided to go. The weather was awesome, a very nice and warm fall day. My friends gave me the breast cancer awareness scarf from last year’s game, so I had my very own scarf for my first soccer game. We had a bunch of friends going and my brothers also bought tickets to come. The game was part of the breast cancer awareness series of games, so I figured I would wear the breast cancer awareness shirt to go along with the scarf (I had a woman stop me and ask where she could get one for her friend).
My hair these days is a bunch of tiny little curls that I smooth out with some gel, but it is a bit unruly. I can’t quite decide what to do with it yet, for now I am just letting it grow and do its thing.
Me, my brother Dereck, my brother Justin and my sister-in-law Tara.
Goofy picture that makes me giggle, but look at all of that hair!
I am not sure when my immune system decided to run off and join the circus, but it did. Since I finished radiation I have had a case of stomach flu/food poisoning (I am still not quite certain what that horrible tummy bug was, but it was the first time I threw up this year. Yes, I never threw up during chemo, just like my doctors promised). I managed to pick up a cold when I was traveling to New York, so I have been sicker the past couple of weeks than I have been all year (different kind of sick, I already got in trouble for saying that, but you know…). Maybe in there somewhere I cut down from washing my hands 200 times a day to about 50.
Obviously based on my previous posts I have been in a bit of an emotional whirlwind. When you are in cancer treatment you tuck your head down and do what it takes to make it through THAT day. You don’t have the luxury to plan how you will feel next week. You learn to avoid making too many plans because you just never know how you are going to feel or what could happen 3 days from now. Once you complete treatment you have a major brain shift. Suddenly you have the luxury to look at your life a year from now, two years from now, or even five years from now.
This is when you go through a shocked moment of “what if I am not here five years from now.” As much as you want to focus on positive thinking, there are moments where you go through the reality of what you have faced. Depression is a common “side effect” of cancer treatment and after cancer treatment. I thought the book about being done with cancer treatment, that they gave me when I finished chemo, would be about hope and looking forward and taking over your life again. Instead it was about learning to deal with the damage that cancer treatment has done to your body. Long term side effects of chemo, living with scars and changes to your body, education about Lymphadema and much more. It was the most depressing book I have picked up in my life.
The cancer box.
I have my pillbox with my Tamoxifen and Metformin/Placebo in my purse so I don’t forget to take it. The odd pains in my legs have gone away (yay!).
I am trying to refocus my energy, be positive, eat well, exercise some day when I don’t have the plague (my cold is named “the plague” today). I boxed up my “You Have Cancer” book, certificates, hospital bills and other items in a box labelled “cancer stuff” and put it away on a shelf while I count down the days until my reconstruction surgery in December. I will just try to spend more time thinking about our upcoming trip to Mexico (I seriously think I bought 10 swimsuits because I was obsessed with finding ones that would look normal on me, but I did get some that look really good).
I took a town car out of New York (they were charging the same rate as a cab, if you have ever ridden in a cab in NY, you will know why I jumped at the opportunity to take a town car). In the middle of a tunnel the car broke down. It was smoking and green fluid boiled everywhere. This is a two lane tunnel, and cell phones didn’t work. His or mine. We sat there for 15 minutes. There are cameras in the tunnel and we essentially had stopped traffic in our lane completely so I figured they would have to send someone or something. People started to move over into the other lane and go around us (there are big plastic barriers that separated the two lanes, so they had to drive over them to switch lanes – which I am sure keeps you from switching lanes at high speed).
The driver finally started to wave at cabs as they drove by asking if they were going to JFK. A cab pulled over in front of us and without asking his passenger (which made me feel horrible) grabbed my bags and put me in the cab. I was excited, he saved my day right? I apologized to the passenger (who was mad at the cabbie for just tossing my bag on top of her fragile luggage – she mentioned something in there was fragile). She was very kind. I offered since I was traveling for work I would cover the fare (the last two times I have traveled in a cab from a conference I lucked out and had other people pay the fare, so I figured it was the least I could do).
We got to the airport and she proceeded to get out. The cab driver asked her for money. I waived my credit card and said that I would pay with my card since she had been inconvenienced. The driver then proceeded to bully her and tell her she had to give him cash (I wasn’t carrying any) because he had saved her over $30 on sharing a fare). She and I kept arguing with him and he refused to get my bags out or charge my card until she gave him cash because he “earned it.” She gave him $20 and he proceeded to charge my card. I was unable to locate how to avoid giving him a tip in the computer screen. So I was essentially forced to tip him after all of that (that and he was holding my bag hostage in the trunk).
It turned out I was at the wrong terminal at JFK and had to take a train to another terminal (which is fine, I was really early, I wasn’t taking any chances on missing my plane). I stood in a hot sweaty line (seriously, JFK doesn’t have air conditioning?)
By the time I got to the front of the line I realized they were routing everyone through the body scan machine rather than the metal detector, they had both, I am not sure what made the determination on which machine they were using that minute). The line was really long and progress was slow. All of my electronics were sitting on the conveyor belt after having gone through the machine as I stood there waiting for the moment that I was probably going to set it off.
My turn.
I stood there for about a minute after walking out of the machine while someone told the security woman that I had metal on my chest. She gave me the “there is a problem look” and I explained that I had breast expanders in my breasts due to a mastectomy for breast cancer. She gently tapped the top of my breast with the back of her hand and asked me to come in a back room because she could feel the metal (you really can, I am not kidding, the metal part of these things feel like rocks – or metal, whatever you want it to be).
I tried to grab my bags (my laptop was sitting right there…) the security agents went ahead and grabbed them for me. I luckily had an undershirt/tank top under my sweater, so I was able to show the top of my breasts without having to get too detailed. The one on my right side had turned, so when I showed her that side she could see my scars. She still patted at it and asked what they were.
I explained that they were temporary breasts that they had placed after my mastectomy and that I was waiting until I was eligible to have real implants put in. These ones had metal so they could locate the opening in order to expand them. They told me I could get dressed and go ahead.
Mind you, the security guards were VERY sweet. They were doing their job. I didn’t bring a letter from my doctor (quite frankly how do you prove a letter from a doctor is real) and I knew there was a chance that they would show up in a scan.
Once I got out of security away from the agent I sat down and cried.
Dear JFK Airport and the TSA,
I saw the flowers you have planted in the shape of a pink ribbon in front of JFK airport today for breast cancer awareness because it is the month of October. I had been warned by a few people that I may be treated roughly because your airport just had issues less than a week ago for harassing a traveler for having breast expanders.
I understand that you are doing your job to make sure that I am not hiding metal objects in my chest for safety. Your agents were polite, kind and untrained for this kind of circumstance. It is breast cancer awareness month, I think that if most of the staff at the airport is willing to wear pink for the cause, it won’t hurt to take 5 minutes to train your employees what breast expanders are for everyone’s safety and to save a circumstance that is slightly emotionally embarrassing.
One in eight women will be diagnosed with breast cancer. Breast reconstruction is covered by insurance, many women may choose to have the surgery that I did.
I feel like my vain attempt at normalcy has left me a bit surprised that life may not be what I had hoped it to be. I want normal, I crave normal, but life after cancer treatment is not normal.
I think it may be that it is an unusual kind of lonely in the normal world, you feel alien, not quite like other people. It could be because you spend a long time ignoring that people notice you in public without eyebrows, hair, and wearing a hat. I think you spend so much time trying to blend in that when you don’t need to you, don’t know how to shine again. My social skills don’t seem normal. I am a bit more skittish, I care more if people like me. I worry that I am doing something wrong and I am much more self conscious than I have ever been. I have lost a certain level of my confidence.
I find myself talking about having had breast cancer to strangers. I don’t know why, I look normal enough these days that no one would know any better.
I lack some of the patience I used to have. I am quick to anger (although the fact that they have been messing with my hormones regularly with treatment does not help my level of emotional control). I still can find myself struggling to concentrate on occasion. I was speaking with my friend Michelle about the fact that I haven’t been able to read an actual book since I was diagnosed. My brain won’t let me focus on it. Luckily my work is a bit fast paced and constantly changing so it hasn’t hurt me there.
My first flight post-cancer treatment was a new reality. First off, I have metal in my boobs, we were wondering if my breast expanders would make it through airport security (they did), but I was a little worried at the embarrassment that would be caused if the breast expanders did set off the alarm. Luckily they did not set it off… but I was a bit tense walking through that machine. (Update: I did have issues with security on my way home)
My hotel bed and lymphedema sleeve.
I now have to wear a lymphedema sleeve, which is anything but attractive, and on a long flight you aren’t wearing enough to cover it up because it is too hot to wear long sleeves. Throw on top of that, it is breast cancer awareness month. The flight staff were going up and down the aisle in their pink garb with their bags out to collect donations for breast cancer (so you could get some pink lemonade or a pink martini) and I look at them with my sleeve on wondering if they know why women wear those on flights?
I know that completing cancer treatment requires emotional recovery along with the physical recovery, but I am just not patient and want my world to be what it used to be. Hopefully I will grow accustomed to the “new normal” soon.
Annnnddddd……… I am back! I think. Maybe. OMG I get tired.
I am off to Manhattan Monday for a conference. This will be my first real trip in about a year. It will also be the longest Mike and I have been apart for a long time too. We are settling back into normal life, but worries from the past year take time to go away. I only have the surgery left in December and even my surgeon reminded me that I have done this surgery before.
"Investigational Drug" Eery looking, but not really eery.
I have been on Tamoxifen for over a week now. I had one serious dizzy episode, but I actually think it had nothing to do with the Tamoxifen. It does appear that I may have leg pain from it though. I thought I hurt my legs from not stretching them from using the elliptical, so I stopped exercising for a few days and got odd pains in various parts of my legs (sometimes it felt like pinched nerve, other times like a pulled muscle). I didn’t really connect the two until today, I looked it up because it seemed strange that my legs were still sore from a workout 5 days ago (and the location of the ache switches from day to day). I am sure this is something I will learn to get used to, the benefits of Tamoxifen won’t be overridden by some aches and pains (the seasonal shift here to snow already certainly plays a part, I get achy joints every year, and the residual impact of Taxol on my joints is definitely there).
I am battling wanting to work extra hours but my brain and body not handling more than 9ish. I have the best staff in the universe though, so I love being at work when I have 5 minutes to pay attention to everybody. My brain is firing almost at full capacity, I have discovered memory lapses that have occurred this past year (fun). I actually don’t have a single doctor’s appointment until December. It is a bit surreal, I am used to seeing at least one doctor a week for the last 9 months.
I am in a study where I will possibly be taking a placebo twice a day for 5 years, but I could also be taking the real thing. Metformin has been shown to decrease tumor growth in rats (all types of tumors, not just breast cancer). It is a medication that has been around for a very long time (a generic) so the long term effects of its use are known and it isn’t really a problematic medication so I figured that I would help out science and take it. We can donate all of the money in the world to cancer research, but in order for it to help people, someone has to be the guinea pig.
My dad and I explored Huntsman today and found a really nice back patio that I had never seen before
I decided that I got an A+ from all of my tests today (even though it took me hours later to get them in here). Of course after all of my tests I am curious what tests are supposed to be completed normally, will I ever have an MRI again, do you do that if you don’t have breast tissue? The things you forget to ask when you are at the doctor’s office (which is why they should be written down).
Today they tested my heart to check my ejection fraction after my previous tests coming back showing that my heart had been a wee bit damaged by Adriamycin (I can’t tell you how many times I have had to spell that word before I could actually spell it correctly every time). I wrote down the numbers this time so that I get them right. I had an ejection fraction of 73 before I had chemo (which is apparently really good) and it went down to 56 after chemo (I got it wrong in my previous post). Sounds like a lot? It is, a bit… Chemo hurt my heart. My test today showed 66, which is pretty major improvement and almost back to where I started!
The second set of tests were my blood tests which all came back as all things normal (my liver was acting up a bit in my last test before my surgery).
The third set was a bit more last minute but I have had a bit of a strange cough. Totally random, dry, haven’t a clue. The radiation oncologist felt like it could be acid reflux so I am going to start medicine for that. They also did a lung X-ray (because realistically, if some tiny twinge happens in your lungs when you are in treatment for breast cancer you worry that it spread to your lungs. Period). It came back clean and clear. I am scheduled to check for asthma if the reflux medications don’t resolve it.
I received my Tamoxifen prescription today. I will start taking it tomorrow morning. WOW. I am on the pill portion of my treatment (5 years, but it is 5 years of pill breast cancer fighting action). Tamoxifen can decrease risk of breast cancer recurrence by 50%.
One thing about my cancer adventures is that I didn’t do chemo and radiation to treat the cancer that I had earlier this year. It was something I went through to keep myself from having a recurrence. Recurrence is strangely something I never had heard of or thought about until I had cancer. It could be a bit selfish, but I had thought that they either got the cancer or they didn’t. I didn’t know that not getting the cancer meant that it comes back elsewhere (stage 4 means it got elsewhere and created a tumor. Every stage before that is based on how far the cancer has spread, usually counting how many lymph nodes were involved). Recurrence can be local (the same cancer cells showing up in the area of the original tumor, skin, tissue etc.) or a recurrence showing up elsewhere in your body (metastatic breast cancer can mean a tumor in your bones or lungs, but it is the same type of breast cancer cells in your bones and lungs). All of the decisions I have made in my treatment have been related to reducing my risk of recurrence and keeping myself from ever getting breast cancer again.
The statistics that come at you when you are diagnosed tend to be based on your risk of recurrence or your chance of dying. Sounds gruesome, but that is really what they measure in cancer studies. They don’t measure your emotional well being or your sex life, they check up on whether or not you are still alive and whether or not your cancer showed up again somewhere in your body (note, if you have breast cancer in one breast, and you end up with breast cancer in the other breast, it is a completely different cancer, but you have a higher chance of cancer showing up in the other breast if you have had breast cancer, whoooo).
You tumor grade and size are relevant in your chance of recurrence. Your tumor “grade” is different from your stage because it is based on the mutations within the cell (the more mutations the more it likes to spread), which is related to how many times the cells split. I won’t bore your with the details, but info on breast cancer tumor grades are here a (mine was grade 3 and a 9) 9 is the highest in grade 3 so this means I get two A+’s today.
So, in short, my tests came out great today. We kicked this cancer in the butt, but I am not going to lie. I am a bit worried about the cancer coming back although I feel like I have done everything in my power to keep it from coming back. Which is why the word associated with cancer is:
Yay! Done! This is probably not the type of certificate parents dream about their children earning.
El fin is Spanish, it translates to end; aim, goal, purpose.
I have written probably 3 or 4 blog posts this past week that I haven’t posted. Some were angry, some were scared and some were sad. This past week my sense of humor has gone out the door, I can’t wait for it to come back, it is sorely missed! I guess I have been writing a bit more for myself lately and never quite posted them. I was trying to articulate what was swimming around in my head and ended up keeping those thoughts for myself for now. I will probably use some of those posts on a later date when I feel like more things are behind me and emotions are a little less raw.
Although radiation has been much easier in several ways than chemo, it truly comes with its own sets of challenges. Honestly I am sick and tired of being sick and tired.
The shiny stuff is the aquaphor. The armpit is healed, the rest isn't.
Today was the end of radiation treatment for me. What I expected to be an exciting and happy moment died quickly as I burst into huge crocodile tears. For some reason pain and exhaustion leaves me with a complete lack of emotional control. The radiation techs wanted to know what was wrong, I admitted that I had had a pretty rough weekend and had hoped I was over the hump and ready to be done. The tech looked at me and told me that it would get a bit worse before it got better (always love to hear that, but I really prefer things to not be sugarcoated). She told me that most of the patients she has spoken with say about 3 weeks after radiation they start to feel a bit more like their old selves.
I met with the doctor (mine was out, so I met with another radiation oncologist due to my little emotional episode). Today I graduated from getting one tiny sheet of Mepilex at a time, to an entire box of Mepilex of my very own. That stuff really is amazing. I have it plastered all over my body. This stuff is $80-$90 a sheet though, yikes.
I am also sad to say, I did not get any of the intended radiation causing superpowers. It wasn’t for lack of trying. I certainly thought the least I could come out with was maybe a little invisibility here or there… but what can I say?
Friday night I started to get deep throbbing pains inside my shoulder and lower neck area. The tendons, muscles, lymph nodes and who knows what else started to really act up. It hurts to hold my head up by the end of the day, everything in there is sore. This is paired with sharp stabbing pains from somewhere between my breast expander and my ribs. Saturday morning I could hardly get out of bed I was so sore. My skin had healed right in my armpit where it was red early on, but the rest of my left side peeled off. You don’t really know where and when it is going to happen – no blisters or sores, the skin just peels off. This is spreading across the entire breast. Where I do appear to have something “blister like” is along my scar area that they did a booster treatment this past week – I can feel it a little bit, but that is where I am fairly numb from surgery. They used a bolus on the scar every day (not the sparkly one, this time I got the rubbery boring one). Considering my doctor hit the majority of my skin about half as hard as she initially planned, I can’t imagine where I would be if things had stayed as planned.
We also recently discovered that pain medication that I had left over from surgery had been stolen. I was saving them for my next surgery or if radiation graduated into the painful zone (which it has graduated into that now, but the pain is very controllable with medication, not that I like being medicated, but I am tired of being in pain – it is that ever interesting debate I have with myself). I didn’t just have them sitting in my medicine cabinet, they were hidden in my closet where few people go. Mike told me to hide them better many times, but I figured they were fine. We had some people treating the house for a sugar ant invasion that could be featured in horror movies (I should have taken pictures, there were on the ceiling, it was crazy!). We think one of the employees of that company took them as they were in the nooks and crannies of our house spraying for bugs. We felt very violated that someone stole something like that right out of our house. I don’t think they knew why I had them, but seriously, who steals pain meds from a cancer patient?
Next week I meet with my oncologist to start Tamoxifen and to check my heart to see if it has improved from the last time they checked it before my surgery. Having radiation on your left side is also a bit riskier for additional heart damage. My fingers are crossed that we see improvement! Today I rest, this weekend, I celebrate!
Photo belongs to Secrets Silversands Riviera Cancun.
Mike and I were planning on a huge trip to Europe next year. After Mike had been at his new job for over a year and I would have lots of vacation time saved up after all of my surgeries and sick days I have had this year. The more I thought about it, the less I could convince myself that we should wait to go somewhere. Although I will owe work a lifetime worth of vacation and sick time after my surgery (which I actually accrue fairly quickly, when you have been at a job for over 5 years the vacation benefits really do stand out). The biggest issue was if Mike could get time off of work. He spoke with his boss and was able to get time off so I have been nonstop “vacation vacation vacation” yapping for the last few days, I think I may be driving Mike crazy.
We are going to wait and go in November so I have had time to recover from radiation and have at least a month to recover from vacation before my surgery. I am not going to list specific vacation dates as announcing when you are out of town on the innerwebs is usually not a good idea, but if you figure it out my house will be house sat and the sitter will be armed and super scary (so be scared! HA!).
The problem was where to go? Not enough time to go to Europe and I am not up for a red eye flight anywhere (I can’t sleep on planes). A lot of people choose to go to Hawaii after cancer treatment, but Hawaii just wasn’t super appealing to me. We were going to go on a cruise, but the more I looked into it, our timing would probably put us on a very crowded ship and I wanted to spend more time relaxing than waiting in long lines (although we will still go on a cruise someday, more preferably when it is a bit more off season).
I have spent the whole weekend trying to decide. I have never been to Mexico so I ended up choosing Mexico after all of the research, I was stick a bit on “all-inclusive” after the cruise research. I chose a resort where the people shared pictures of the food just as much as pictures of the beach (thank you fellow travelors!). Mike and I tend to spend a pretty dime on food when we travel, so not having to think or worry about finding great food is pretty cool. I also chose an adults only resort (so that I am the only one peeing in the pool, because adults don’t do that right?).
I still wish money grew on trees, but we have been able to save some money over the past few months (after I depleted our vacation fund to finish the second bathroom as I anticipated needing my own bathroom space with chemo and surgeries in front of me before and after photos here). The problem with booking a vacation is that you figure you deserve “just a little bit more” and I kept upgrading and downgrading and upgrading – I signed up for the normal room (which is still a jacuzzi suite, muahahahahaha), but entered a contest for the upgrade *fingers crossed*. Oh well, money in a savings account or memories forever, today I choose memories. Mike and I need to get out of our normal cancer treatment routine and have a real vacation (after our pretend vacation left me in a full body rash – yes, my life is what slapstick comedies are made of).
So, as I go through my final week of radiation, all I will be thinking about is white sandy beaches and getting myself bikini ready (I just bought a new one that should hopefully cover up my scars, I can’t really try it on until the radiation redness calms down). I have temporarily stopped working out again. Getting my butt to the hospital before 7:30 AM every day sort of zaps my energy by the time I get home from work, but now I am enthused to get my butt back on that elliptical. Either way, OMG I am going on vacation!!!
Or so I keep telling myself. I sort of lost half of the skin in half of my armpit over the weekend. No pre-blister slowly going away, just BAM! Gone. I think it may have been because a shirt was rubbing me? I am just not quite certain how it went away, other than the fact that it did. Luckily my first day back at the hospital with the sore armpit was the day that I got to see my Radiation Oncologist. She cancelled all use of my fancy sparkly top for this part of the radiation (of course she saw me after I had already been radiated with it that day).
The doctor told me that everything will continue to do its thing for 7-10 days after they stop radiating, so she was basically letting me know that I will probably lose more skin. It feels like a blistered sunburn, not a pleasant thing, but they gave me a Mepilex dressing which is a thin sheet of foam cut to cover the area in my armpit that is sore, and it works like a champ. It doesn’t have any medication, but somehow the dressing itself really cuts down on the pain.
I have 3 more runs of the entire breast/armpit/collarbone neck area. Next Tuesday I will switch to what they call the “booster” for my last five zaps. This is where they will focus on my mastectomy scar only. I am hoping this means that the rest will finish doing the post-radiation radiating so that when I am done with all 6 weeks I won’t have too much continued deterioration of my skin.
I have had bouts of being tired throughout the radiation treatment, but this past week the tired seems to be accompanied with nausea and dizziness (which is completely not normal, so anyone undergoing radiation, this isn’t an expected side effect). I am not sure if it is being so tired that does it, or from being sore. I keep thinking I have the flu (maybe I do?), but this has been going on for over a week, so I am just not sure. It forces me to go back to taking it a bit more easy, which sucks because I was starting to feel more recovered and back to normal for awhile there, but I am getting so much closer to done it just isn’t worth fighting not feeling well for the end of this.
I keep telling myself that I only have to do this a little bit longer. I am getting close to being done with actual cancer treatment (unless you count the daily Tamoxifen for 5 years, but that is a pill rather than a hospital visit).
8 MORE treatments! I will then get a nice break until surgery on December 27.
