Our Christmas tree.

Mike has always wanted to decorate the house for Christmas every year. I am terrible about decorating for the holidays. My mom had 6 or 7 Christmas trees in her house for years and every nook and cranny was stuffed with Christmas decorations (which also meant every bit of storage was filled with Christmas decorations). I always felt like she did enough decorating for the two of us right? Plus I am lazy about putting it all up and taking it all down makes me tired. I think there are still Christmas lights in the window from 4 years ago…

My mom moved into a smaller place this year so I talked her out of a Christmas tree with the plans to put it up. Once December rolled around I really didn’t want to put it up (I am not going to be able to take it down, but I guess Mike gets that chore). Mike insisted and pulled it out and I bought some decorations and BAM, we have a Christmas tree. After I got the tree up I decided to step it up a notch and buy real Christmas stockings. Yes, it is beginning to look a lot like Christmas at my house.

People are starting to do the math. I have surgery on the 27th and my birthday is the 31st. If you recall last year I didn’t have the best birthday (it was the best because I got to see a lot of my friends, but it was hard because we weren’t telling people I had cancer yet). I can’t believe I am turning 32 (yeah, heckle me all you want). This past year seems

Mike and Mandi

to have flown by and now I am putting in squishy boobs (that is what I have been calling normal implants lately – turning 32 isn’t necessarily causing me to grow up completely…). Our regular New Years Eve party will now be a “hang the disco ball in the bedroom and sleep” party. Just pin a bow on me and call me “party animal.”

I am emotionally and physically ready for surgery now. My breast expanders are starting to get really uncomfortable. I usually can’t wear a bra when I get home from work, I ache at the end of the day. I have known breast expanders can be uncomfortable and I am glad that it is becoming a more recent issue vs. being a major discomfort all year. I am still glad that I have them and I am excited to be done!

Sometimes you have to leave home to appreciate it more. Thanksgiving takes on a whole new meaning for me this year. The holiday used to be about turkey and family and food… I have learned to take a moment to be extra thankful for the amazing family, friends, strangers and my fantastic husband that have all come together to take care of me and put up with me through all of life’s challenges this year.

I have made connections with my extended family that I hadn’t seen in years. I have spent more time with my immediate family, probably more time since we all lived together. We have laughed, we have cried, we have been scared together and we have loved. I don’t know what I would do without my mom, dad, and brothers. I lucked out in the marriage department and married someone who has been my shoulder to cry on (and when you face breast cancer, there is a new cry that you find out about, a deep sad cry that impacts every fiber of your being. You have to cry this cry, holding it in all of the time makes it hurt more). Mike would tell me I was beautiful even when I was bald, one-boobed, pale from chemo and cranky because I couldn’t get a freaking glass out of the cupboard.

Mike and I spent Thanksgiving in Mexico. It was a week that we had some days off work already, so it was easier for us to take a whole week off (for something other than hospital visits). We stayed just 15 minutes south of Cancun and just north of Playa Del Carmen on the Yucatan peninsula. I booked our trip when I was in the middle of radiation (I did end up adding the room upgrade once we got to the resort…). I was exhausted when I booked it. I still hadn’t quite bounced back from chemo and all of the surgeries. Life involved so many appointments that being more than 20 minutes away from the hospital seemed like an impossible dream, but I needed something sunny to look forward to to keep me (somewhat) sane (although I make no promises of sanity before or after breast cancer).

We had an amazing week of not accomplishing much more than sitting in the pool. We did head out to Chichen Itza for a day. We stayed at a resort where we had to get dressed up every evening for dinner (so I got to buy some cute sundresses to bring down). This was also the first time I felt really comfortable in my “new skin.”

Relaxing at the resort

Chichen Itza

Romantic Dinner for Two

Pool Time!

Long walks on the beach at sunset

View from our room

Now we are just counting down until my surgery on December 27. I am not looking forward to it, but I am ready to have it behind me, start Tamoxifen again and have a few less things in front of me, and mostly everything behind me.

At work after my haircut and the new color.

Friday I had a couple people at work (in different departments, the ones in mine are used to me being around and annoying, haha) tell me how genuinely happy they were to see me back. I guess I forget that everyone worries about people under these kinds of circumstances and it is touching to know that so many people care (and like me enough to want to see me wandering the halls of work). It did take a little longer for people to know that I was fully back (with hair).  What they said brought tears to my eyes. I don’t know why it impacted me so much, but I have always felt important in my organization, but I really had the moment of realization that my life is a bit more back to normal after fussing over my life being different).

I have a really stressful job. Part of me makes it stressful (I function best under pressure), but part of it is the reality of what I do and who I do it for. I try to keep the specifics of work and my cancer treatment a bit more separate on this blog. I don’t want this experience to halt my opportunities in the future and the opinion of me, but I also know that if someone looks down upon me for having had this journey, they can screw off.

I work for an unusual and amazing company and I have been able to play a big part in the growth of this non-profit organization for the last 5+ years of my life. It has been an exciting and emotional journey. What adds to this is that I have a great team of individuals under me. Seriously, they are the best team ever so much fun, sharp learners who are also passionate about what they do. I have watched the company grow from under 300 employees to over 1,500 employees. 30% growth year over year (which is kind of cool if you work in the advertising/marketing department). All of that, with minimal price increases over the price over the last 5 years.

Close up after my first haircut and dye.

On top of work I have been involved with a few local organizations related to my industry and Utah in general. Today I put my hand out to volunteer to take on additional responsibilities I used to have in one of the organizations. Two months ago I would not have been able to comprehend taking on more responsibilities on top of work. Work took all energy, if I had a teensy bit left I would accomplish a thing or two around the house and that was about it. Taking life back on has been an emotional journey every way you look at it. The ups of when “I can do it” the downs of when “I need to go home and vegetate” have haunted me from the day my treatment began.

Working with cancer is a topic that I don’t really seem to see out there as much. Let alone 31 years old with an established career and cancer. There were moments questioning why I spent so much time in school (I have a master’s degree) only to face death shortly after (not that I am dying, but the reality of death is something that comes with cancer treatment and after treatment when you face the fear of it coming back). I really feel like I have been in school since I was four. Which is almost true (I had this crazy idea that I HAD to finish my master’s before I turned thirty, and then after that I have tossed around the concept of a PhD – I think I am a glutton for punishment). The good part in this is that my education is paid for (mostly by me) so I don’t owe two pennies for getting to where I am (just a lot of time, studying and sleepless nights).

As each day passes I am finding more energy and more clarity.

Snow in our bushes.

The lack of drama in my health life at the moment is perfectly fine. The doctors had me delay starting Tamoxifen back up until after my reconstruction surgery. Starting, stopping, starting, stopping… it seemed counterproductive (Tamoxifen has a pretty decent increase in the rate of blood clots, so you have to stop a decent chunk of time before a planned surgery). Which means I am LIVING LARGE on estrogen. It is like a drug when you haven’t had it in awhile… Which is also a bit scary, estrogen is cancer candy.

I am still getting minor dizzy spells (nothing like before). I don’t know if they are stress or fall weather or what. The paranoid part of me drifts into “tumor in my brain” the logical side of me goes “body recovering from lots of trauma.” The battle continues on the inside, but the outside wants to just live without medical drama and not pursue it. I am sure it is innocent, but I will probably call my nurses because I have a new paranoid part of me that ignores medical issues a bit less then I did, say, two years ago…

I must admit, it is purely impossible to buy too many clothes for a vacation. My obsession started with swimming suits and then sundresses… Which should be pure insanity since it has been snowing here off and on. It has been a late fall (but summer didn’t really start until July). I need to stop buying new clothes (that I can’t wear to work)… but part of me is satisfied that now I know how to shop for “the new me.” I know how to hide my scars, but feel proud of how I look (I still can’t quite get used to the hair). Although the “new me” isn’t done until February-ish.

I don’t regret my bilateral mastectomy. I know young women question whether or not it is the choice for them. My surgery was able to preserve the skin and nipples, even though they aren’t what they were (luckily I don’t have a photographic reminder of quite what the breasts used to be). Surgery choice is an extremely personal decision that you make when you don’t have a clear mind. I prefer not worrying about the tissue in there creating tumor cells, instead I just worry about what could be “leftovers,” but everyone hates leftovers, so I don’t have any… I had so many stupid complications with my surgery (which these days I blame on not letting my body rest and heal properly). I wanted to do too much too soon.

Tomorrow I get my first real haircut. I haven’t a clue to do with this mess of brunette curls. I couldn’t decide who to have do the first haircut, but I decided that I wanted to have the hairstylist who chopped it all off cut it. It seems like a full circle that I am ready for.

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.