January 2012 archive
Making faces for the camera. Hair before my second haircut tomorrow.
Something about my doctor’s appointments strikes a chord of fear in me these days. Pre-appointment evenings are filled with anxiety and I never sleep well. Luckily during the day I am sucked into being so busy at work again. I can keep my brain occupied during the day which is a good thing in my world. I love work work work.
I am much calmer about my test results from my last post. I have had a lot of awesome friends who have been through various stages of bad paps to cervical cancer talk to me and calm me down (including those that commented on my post, seriously, thank you). My PA oncologist also pulled up my pap results and confirmed that they are probably nothing to get too freaked out about (atypical cells, nothing that screamed “CANCER!”). I already claimed to be a hypochondriac, every lump, bump and ache gets my mind going (my doctor said that everyone says that after treatment). Good to know I am in good hypochondriac company.
It is true that I think about cancer a lot less than I did two months ago. I can go a few hours without it hopping into my mind, I expect it will get further and further apart as time goes on. Fear of recurrence is still an active experience for me, but I am going to have to accept that it is my fate to have that fear, and just keep my head up and keep going. I caught myself thinking about something and my brain added “and cancer took that away from me” – I can’t remember the specifics of the thought except that I stopped myself and realized I need to refocus my thinking. Cancer only takes away from me what I let it.
I was one of 11,300 women under the age of 40 diagnosed with invasive breast cancer in the US last year according to the American Cancer Society (I figure they count me as diagnosed in 2011 since my labs were done in 2011, I was told I had cancer in 2010). When you think about how many women there are in the US under 40, that really is a low number (but don’t rest too easy, the numbers go way up after 40). Sitting and waiting for my doctors today I swear I saw a lot more young women then I would have expected.
I find it oddly unsettling that I don’t have any tests completed (other than blood) when I see one of my doctors regularly over the next five years (I have three doctors I have to see regularly). I met with my surgeon and oncologist today and everything seemed pretty much o.k. Everyone that got a looky-loo was very excited about how everything looked after surgery (I agree with them, my plastic surgeon did a great job). The doctors felt around my lymph nodes, I had nothing too exciting to report beyond an ache in the inside of my shin bone (I have used the elliptical a little bit and it could easily be shin splints?) – I guess bone metastasis is very rarely below your knees and elbows, which is good to know because I can tend to get aches there, so I will have a few less things to get myself worked up about.
I did admit to a little bit of the blues (winter does that to me without other things weighing on my mind). I am not a huge fan of taking antidepressants (for me, I am not saying they aren’t great for other people), I think exercise is the best medicine, and I will just have to haul my lazy carcass out of bed at that six-week post surgery mark and get that therapy going.
So we continue waiting and seeing. My oncologist and surgeon opted to wait six months to see me, so I should hopefully get a break after my tests on the sixth! I may go through doctor withdrawals… Should I see a psychiatrist about that?
My second haircut is tomorrow!
I had to cancel my haircut because we had to get a furnace installed that day. I really need a haircut.
It seems like the excitement about completing my cancer treatment and moving back into normal life is supposed to be the next stage for me, but alas, a wrench has been thrown into my wheel of life. My lady parts are trying to kill me.
I am starting to feel like a drama queen.
My pap that I had completed when I was getting my lump checked came back abnormal in December 2010. My doctor didn’t feel like my abnormal pap required any additional attention at the time (we also had the very obvious lump in the breast in the front of our minds). I had a three year lapse before that pap, I kept putting off getting it done, which is a big no-no (ladies, mammograms yearly after 40, paps yearly by 19)! I only actually had the pap done because I needed to see my doctor about the lump… I waited to have my follow up pap until I was off work recovering from breast reconstruction. I knew there was a chance it would come back abnormal, and I didn’t want to deal with it until after I had finished everything else.
My doctor told me I would get a postcard if things were fine or a phone call if there were concerns. My doctor called me thirty minutes after I got to work on my first day back in the office after surgery. I broke down, I tried to keep it together, but I couldn’t. I answered the phone telling my doctor that I knew it was bad news because she was calling (last time she called me I answered saying I knew it was cancer and just wanted to know what kind).
She recommending that I get a colposcopy due to atypical cells that showed up in my pap, two years/tests in a row. I have had atypical cells before many years ago and everything turned out to be ok, but I had also had a benign breast lump before. My heart dropped out of my chest. My brain doesn’t do “this is an unlikely scenario” instead it jumped to “oh my, do I have to do cancer treatment again? I gave away all of my hats…” Normally I would just figure “meh” I will get the biopsy and everything will be fine, unfortunately my brain doesn’t comprehend normal biopsies anymore.
I had heard and read that young cancer survivors sometimes get multiple cancers (my family doctor suggested that I start getting my colonoscopy at a younger age due to my overall increased chance of additional cancers). I read that I have a 38% increase in the likelihood of skin cancer (both of my parents have had skin cancer, to me, at some point, skin cancer is most likely guaranteed at some point, but this is more treatable if monitored and treated early), radiation isn’t skin friendly. I also know now that chemo can increase the likelihood that cervical cancer can rear its ugly head, but with cervical cancer, like most breast cancers, regular testing and early diagnosis can make it a bit easier to treat and increase the likelihood for survival. I will never in my life say that any cancer at any stage is “easy.”
Mike and I have now been thrown into the emotional whirlwind of the possibility of facing another cancer. This also means I start with a new group of doctors at Huntsman. They group by specialty area, and this is a different specialty. I have had unusual bleeding and pelvic pain over the past year, but I just attributed it to the crazy hormonal changes that I had with chemo-induced menopause, coming out of menopause, and now Tamoxifen. Who knows, those changes could cause changes to my cervix… The soonest they could get me in was the 6th of February for the colposcopy (I am having it done at the Huntsman Cancer Institute because it takes weeks to get in to see a doctor if you have a cancer diagnosis, let alone just checking for cancer – and it was going to take just as long to get in to see a regular gynecologist).
Cross your fingers for me. I delayed posting about this because quite frankly, this topic is a lot more embarrassing to me than my breasts. I also needed some time to get my head on straight about the real possibilities vs. plain old fear.
One benefit when I am recovering from surgery is that Mike lets me break the "no dogs on the bed" rule.
My final surgical drain came out today (2 weeks after surgery and drain free! Last time I had Gus who decided to stay with me for 4 1/2 weeks – yeesh). I am excited that I finally go back to work after a surgery without carting a drain under my clothes around. The plastic surgeon asked that I stay on the antibiotics for another 48 hours after the final drain came out and then we cross our fingers (here’s to hoping it was a lung issue!). It is bad that I am a bit of a pessimist, but every time I thought things would be ok I would get a surprise, so now I just go with the flow and accept that something could happen.
I am still laying low and keeping my activity down. I get about 2-3 hours of out of the house activity and then I am beat (which over the last couple of days has consisted of running to one appointment or another).
There comes a point in time in which those that blog about their breast cancer treatment are stuck with the question on whether or not they should retire their blog or continue blogging. I have now checked off everything on my treatment page. Part of me says “scrap it” and part of me wants to continue bits and pieces of my life in the coming years. I have made many friends along my journey and I know I like to keep up with where they are and how they are doing (it just comes with the territory of the blog world and why we continue to read something, we want to know what comes next). I guess how much I post will be driven by where my time and energy goes in the coming months.
This blog has been pretty personal in some ways and I worry if I should be more private. I guess that is one of the reasons blogs are read though, impersonal ones don’t have the flare that someone’s actual thoughts, opinions and emotions bring to what they write. Some of my favorite blogs are the no-holds-barred-anything-goes-blog where the blogger says exactly what they are thinking – now those bloggers usually make a living blogging and I am just blogging about living.
This blog been about my life in cancer treatment. My cancer treatment from here on out is my check ups and Tamoxifen. There are only so many ways to spin taking a pill everyday before it becomes very unexciting, unless it turns me blue and makes me blow up into a blueberry or something ridiculous. Life has to go on right?
I have a million little cancer related projects swimming around in my brain, but realistically I need to get back to my career with the hope that it and I have a future together (of course I learned this year that there is very possible to overdo it and I have to find that right career/life balance which is much easier to do when you aren’t having chemo every other week, surgery every few weeks or radiation every day). Projects can come when I find time and energy.
I now must begin the focus on me and my physical and emotional health. Exercise and eating healthy have been proven time and time again to help you during and after cancer treatment. Once I am cleared for normal activity I intend to go back to the elliptical at least 5 days a week. Eating healthier is much easier when you are actively cooking meals. I had started to focus on cooking as a hobby before I was diagnosed with cancer and I imagine I will fall back into it once I am able to go grocery shopping regularly again (has anyone noticed that cool recipes always require every ingredient you don’t already have in your house).
My healthy eating is a little more focused on getting fruit and vegetables in my daily diet (you can’t convince me to stop cooking with butter, cancer or no cancer). My body isn’t agreeable with fast food or deep fried anything anymore. I just feel like I have run into a brick wall when I eat that stuff, Mike could live on junk food if I would let him (he can eat anything fatty and lose weight, it is ridiculous).
I imagine I will post about my appointments (at least I know my dad is reading and gets those updates ) and hopefully some progress on the “Healthier Mandi in 2012″ campaign.
Also, did you know Utah has one of the lowest mammogram rates? Go get your mammogram if you are overdue. NOW! Also, ladies, don’t forget your pap. Ladies and gentleman over 50, get that colonoscopy. Rant, rave, test, test, test…
It is always funny (to me) when I go through the healing process after surgery (seriously I feel like an expert these days) when I start to experience less pain so I do so much more in the day only to find myself completely exhausted after a couple of hours of what seems like little activity. I have left the house the last two days and returned a tired semi-functional being. That comes with the territory. It always amazes me how much surgery saps my energy and how much time it takes to get it back (2 days ago I felt like I should be back at work, today I just want to crawl back into bed).
The other day I was thinking through the evolution of my pre-surgery photos (you can tell which were planned months in advance vs. emergency based on the hospital, which is based on the wallpaper in the pre-surgery waiting room):
Bilateral mastectomy day:
Before my mastectomy. You can see that they marked up my whole chest, and I am being goofy in my hat.
I literally found out I was having surgery this day about an hour before I had surgery, I called it “surgery surprise” (wallpaper):
I still have eyebrows.
This surgery was a bit more planned. I knew I was going to have the expander removed on Friday and they took it out on Monday (wallpaper):
This hat was so comfy, it was the first one I bought.
Before I had my fourth surgery I had my bald photos taken, mind you, I am in a sundress and I am wearing a cotton prosthesis on my right side (which is another way of saying I only had one “breast” at the time):
I wore sundresses, with or without the right one. It amazes me now that I did the photos then, but I figured I may get hair while I was recovering from the next surgery.
This surgery was a latissimus flap reconstruction to put the expander back in the right side after I finished chemo:
I officially look like a cancer patient in this one. Three weeks after my final chemo.
Final breast reconstruction and I just get goofy:
Five surgeries in one year, no wonder my plastic surgeon and I know each other so well. He was less than enthusiastic when I stopped by for my post-op visit Friday when he found out about my fever, he wants this last surgical drain out the moment it is ready to come out (they are an infection risk) – as if I don’t want it out the moment it can come out. The surgical drain left still attached is placed in my back and my activity level the last two days hasn’t helped the output go down. I also have been under a bit of stress, which doesn’t help the healing process much either.
It is a wonder why women avoid reconstruction in addition to treatment, but I don’t regret it. I am happy with the outcome and it will help me heal emotionally in the time to come.
I think I am going to have to do a series of photos from my eight chemo infusions, I find it interesting looking at the changes that chemo causes in your appearance.
Life in a surgical top and surgical drains.
Today I started that little white pill Tamoxifen again. I stopped taking it in October when we were trying to determine what was making me crazy dizzy. It was decided that I would just wait until after my final breast reconstruction to start taking it again so I wasn’t starting and stopping and starting and stopping. I need to be on Tamoxifen for the long term for it to be effective.
If you are unfamiliar with how Tamoxifen works. It “looks” like estrogen to cells that use estrogen to reproduce. They pick up the Tamoxifen in place of estrogen and it inhibits their growth. I found this chart that shows how it works vs. cells that do not have an estrogen receptor (triple negative is a type of breast cancer that does not have estrogen, progesterone of HER2/nue receptors – this is a scary type of breast cancer to me because you have less targeted treatment options in your arsenal). Her2/nue receptive is also considered to be a more aggressive type (I didn’t have this, my aunt did), Herceptin has really helped in the fight against that particular type of breast cancer cell.
What Tamoxifen does in breast cancer with estrogen receptors.
This also means your normal cells that would use estrogen are also blocked from using it, so you have side effects like menopause, because your body is not getting and using the estrogen it may be accustomed to (so nothing is done to slow down estrogen production that I am aware of, just how your body uses it).
I am having good days and bad days as I heal. I keep trying not to push it, but it is hard to sit through life with your arms behind your back and do nothing. Mike has been home with me since surgery and went back to work today. I am resting most of the time and have my surgical follow up with my plastic surgeon on Friday. I am going to have to play “where did you stick that muscle” because the last time I had this surgery I could see and feel exactly where the latissimus flap was placed (plus it was still attached to some of the skin – sounds gross…). This time he didn’t use the skin and he did something with it differently for aesthetic reasons (I can see where it is under my arm, but once it hits the implant, BAM hidden). He told me he did something different, but now I am just deathly curious just what that means.
My fever calmed down Saturday and I haven’t had a fever since. So hopefully we cleared the infection before it got very far.
My back has been the area that has been giving me trouble this time (last time it was my front, but I remembered that last time they had to get the skin separated from my chest wall to get the expander in, and this surgery the space was already there). I think that the funky white top has been helping keep swelling down and has been adding a bit of pressure that helps with pain. I stopped pain medication Saturday and I was back on them Sunday. I am back off of them today. My level of cranky goes up at rate that I am in pain, this graph illustrates the cranky to pain ratio we have going on here (the rate at which my pain increases the cranky increases):
The cranky to pain ratio
Just be glad Mike hasn’t murdered me… yet…