My blanket they gave me when I finished chemo.

I don’t even have the heart to call my medical researcher yet to tell her the news: I quit. I am not really a quitter, so the concept pains me, but Mandi 2.0 (that is post cancer treatment Mandi) has learned that sometimes you have to make choices based on your quality of life. Of course, quality of life isn’t something you really learn about until you have medical issues in which your doctor discusses their concern about the “quality” of your life.

A week off of Tamoxifen and the dizzy spells were getting worse and worse. When something challenges my driving ability and how I feel at work I consider it to be a quality of life issue. They had told me that people drop out of the study because side effects, but I didn’t quite know or realize what they meant. I felt better driving the day of chemo vs. these unexpected episodes. I am pretty dissapointed because I wanted to participate in this research, but feeling so out of it was making me depressed and my overall emotional well being is important to me and my recovery. I seem to be bouncing between too much blood sugar and not enough blood sugar with no rhyme or reason when it comes to the ups and downs and when I had my last meal. I am not at a point in time in which I want to figure out my blood sugar (and I think they would have to allow me to test it, which proves whether or not I am on the placebo, which kills the whole double blind study issue). I guess I should ask, but the past couple of days of being off all of the medications have allowed me to feel about a billion times better.

Our costume choices tend to be driven by cheapness and convenience, but look at that cute husband of mine.

I am started to notice more and more energy! I am getting more done in a day than I did a week ago, and that week vs. two weeks ago. I think my amount of energy can directly be measured by how much I cook. Lately I am cooking several meals a week rather than coming home, flopping on the couch wishing dinner would magically appear (we have been watching Star Trek Next Generation a lot lately on Netflix, and so I see that food replicator fulfill orders…).

I am haunted by the question of “what is next.” Not that I have a huge desire to change things in my life, but I am understanding why people create a period of upheaval after cancer treatment. Work is back to being stressful because it is work. I have a great marriage to a wonderful man that I love more than anything in the world and I just want to spend as much time as I can with him.

I still shudder at being called a survivor, when someone says I have survived I am just not sure how to respond, my brain says “from what?” I posted in April that I wasn’t a survivor. I am still not. I am Mandi, I had breast cancer, but I am still just Mandi (although I have been told cancer has changed my personality, not that I am surprised at that, I just don’t quite know how and if it is good or bad). Cancer treatment sucks, but I am not sure I will ever be convinced that I truly survived. I feel a need to give back in some way, but I haven’t figured out how or where or what. Quite frankly I just need to get through this next surgery, focus on work and then figure it all out (I will figure it all out right?).

On a side note my surgeon, along with the local support group for younger women with breast cancer were featured in a local TV special.

My breast cancer awareness shirt and team scarf.

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.

Mike and I.

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).

- THINKING POSITIVE -

Cars swerving around us in the tunnel.

I have to say, I like to live on the edge.

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.

Thanks,

Mandi

View from my hotel in New York City.

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.