This past year is a bit of a blur in different ways. There are so many ways I could talk about my experiences, hopeful, angry, sad, scared – there are so many emotions tied to the cancer roller coaster. Here is the video I made after I finished radiation with photos from my treatment:
Last night I got the rude awakening that I am not out of the woods yet. I was running a fever, I was sooo cold that under 6 blankets and a robe I was shivering. I called the on call physician, I was at 100.8 when I called, he explained that it was most likely an infection and sent me to a 24 hour pharmacy to get back on Augmentin (one of the “big guns” antibiotics, sooo been there and done that, I believe it was originally described to me as causing “sudden and unexpected diarrhea”). I was told that I got to go hang at the ER if I got up to 102. I reached 101.9 which wasn’t 102 so I stayed home. Today I have a mild fever, but it is not peaking into the danger zone. My hope for today is to be able to celebrate my birthday at home rather than a hospital (fingers crossed). I am drama, I swear… Nothing seems to ever go quite as planned.
I love that the American Cancer Society is the Official Sponsor of Birthdays. Today is my 32nd birthday, and I no longer grit my teeth at getting older, instead I celebrate another year of life.
My little brother posted this on Facebook yesterday:
“Exactly one year ago my sister called me to me to me she has stage IIb (in lymph nodes) grade III (very aggressive) breast cancer at the age of 31. I remember vividly driving into work on a snowy day to take care of something on my day off. I was scared and crying when my sister said she had a 2.5cm tumor. My sister is one of my favorite people (if not my favorite) in my life and is my muse (I have to include my mom in the muse category.)
Now a year later her treatment is finished. I’m often asked if her cancer is “gone.” There are no guarantees in life and if it comes back it would most likely happen in the next five years, and that is why she is on a drug called Tamoxifen (it messes with her body’s estrogen) for that time period.
They say breast cancer will occur in 1/8 women in the US during their lifetime. If caught early, it is very treatable. Women should start having mammograms at age 40 or earlier if you have other risk factors. Self checks are important because that’s how my sister caught hers.
My sister kept saying “I don’t know how anyone could go through this alone,” when she would see people alone at appointments. She had a wicked awesome support group, from her husband, friends, family and even strangers who had gone through the same thing. My family is very excited to put 2011 behind us, and this will hopefully be my last post about breast cancer.”
Everyone assumes that you are automatically in remission after you finish your treatment (which when you include Tamoxifen, which I start again next Tuesday) I have 5 years left in my cancer treatment. That is 6 years. Anyone who has had cancer or has been close to someone who has had cancer knows that the real fight actually starts after treatment. What this also means is that I can’t even consider having children until I am 37 (it was never in the big plans, but life changes). If I am still able to have children.
You fight the “what if’s” what if I am not here 5 years from now (recurrence usually occurs year 2-3 but can happen as far as 10 years out). Recurrence is stage 4 for me, and there is no cure for metastatic breast cancer. What if I am making the wrong choices in my life if I have a limited life in front of me? Everyone wants to hear that I am fine, and when it comes to the battles of chemo, radiation etc. I am great! I don’t look sick (of course I didn’t when we found out either). It is frustrating at times for my family because all we can do now is wait and hope. For now I stand in Cancer Limbo Land (best described by another blogger).
What I have learned this year:
Let others help you
I am stubborn, I want to do everything and I hate to have to rely on other people. One of my early lessons was to take a step back and accept help from others. I have made new friendships with women going through treatment, those who had been before me, deepened my relationship with my extended family and developed a whole new level of trust and love with my husband. I have needed and am grateful for the help I have received.
Family is important
For years I have been craving moving somewhere tropical and warm, but having my support group close really makes me rethink the whole moving thing. I want to stay close to my family so that we can celebrate life. I always had a big crew when it was time to go to chemo, surgery or my appointments. Cancer is a very lonely thing and I was never alone. Mike and I have been pretty inseparable this past year.
Don’t wait for happiness to come to you, create your own happiness
I do my fair share of complaining, but I try to find the funny and the good in the most difficult of situations. If you spend your life complaining about how bad everything is for you, you are probably missing all of the good things that you have. It is really the little things that make life so grand, enjoy the little things when you can.
I hope everyone has a safe and very Happy New Year! Let’s make 2012 the best year EVER!
I was diagnosed with breast cancer on December 30, 2010. I am sort of able to type now, so I figured I needed to get in a post. A few words, rest, a few words, rest. Amazing how much you use your chest to type. IPads and phones are ok, but the laptop is a challenge.
The were pretty far behind on Tuesday when we were waiting for me to go into surgery. Luckily they didn’t have us come in super early, but waiting makes me antsy. My support crew Tuesday was my mom, dad, little brother Dereck and Mike. We were a little goofy, so every time someone had to deal with us we managed to get a giggle or two.
Making sure I smile while I wait.
My mom and Mike tortured me with the scent of their delicious coffee in the waiting room.
They do in fact operate on zombies, since this was me right before surgery.
The moment came where the dreaded IV was an issue. The nurse couldn’t get one in, so the anesthesiologist was given the task in the OR with laughing gas. This time he grabbed a vein in my hand to get me to sleep, but it was too small for actual surgery, so he got my foot once I was out cold. I had let them know that the last couple of times I had come out of surgery thinking I was going to throw up and they told me they would take additional measures to try to keep me from getting nausea after surgery.
Where they were taking skin and the latissimus from the left side. You can see the matching scar on my right.
I came out of surgery feeling fantastic. It was strange. No nausea, I was chatty, we got me my ice chips and before I knew it I was whisked away to my room. Everyone was surprised to see me with a smile on my face (even with a foot IV). As soon as I got to the room I complained that the nipple was in the wrong place (priorities, priorities – I had peeked under the fancy white huge ugly bra they have you wear). The new implants sit completely different from the expanders, as soon as I was able to I got a look in the mirror and verified that they were in fact in the right place.
They managed my pain well through the first night and I woke up pretty energetic Wednesday. I was eating and drinking so they took me off the IV and switched me to oral pain meds. The nurse felt like I could go home so she had my doctor come see me before he went into surgery. I told him that I noticed he didn’t use the skin flap on the left side, he said he ended up just placing the muscle without the skin because I ended up with a huge lump where the muscle was and it didn’t look as good. They did cut out some of the skin area on my right side before they placed the new implant. They did send me home Wednesday.
Thursday Mike made me breakfast in bed, put away all of the Christmas stuff, cleaned the house and made a huge dinner. Unfortunately about an hour before dinner was ready I started throwing up and I had a migraine. I was not feeling well at all. I called the hospital this morning and had them switch me to lortabs to see if the headaches and nausea will go away. I don’t feel much pain as long as I stay laying flat on my back.
I have to wear the compression top for 3 weeks to hold the implants in place while everything heals. I only ended up with 3 drains, which is very manageable. Everything looks better than I had hoped it would look, so I am pretty happy. I imagine it will be even better after I heal. Also…
I went to see my plastic surgeon last week. It was my first time in the new breast care wing of the cancer hospital. Since it is a new wing they also have all new employees at the desk. When I arrived the front desk asked if I was there for a mammogram – sometimes I should think before I speak – I giggled and explained that I didn’t have anything in there to check in a mammogram and explained that I was there to see the plastic surgeon (the old receptionists thought I was a hoot, not sure this one agreed).
I was diagnosed at a different hospital than I received breast cancer treatment and got this in the mail (it made me giggle and I showed it to Mike, it made him giggle, I think cancer gives you a sick sense of humor):
I can’t believe how nervous I have been about surgery (I figure it has to be about surgery). It started about mid week last week. I have been a ball of raw nerves. My best reaction is to try to stay occupied, the more quiet time I have the more I tend to stress out. I am back to reading again (which is SUPER exciting for me, I haven’t been able to sit down and focus on a book in a year). I have been playing video games with Mike, making holiday treats for coworkers, Christmas shopping and doing all things December.
I think a lot of my nervousness comes from taking time off of work… again…
Mike took this when we were goofing off at a friend's house. I call it "deep thought."
The other part of my anxiety stems from the fact that it has been almost one year since I was diagnosed with breast cancer. I made my appointment in early December to see my doctor about the lump, I saw her on the 14th and my ultrasound was on the 30th of December. We usually host a New Year’s Eve/birthday party for our close friends, this year I am going to still be on bed rest, so I will be pretty boring. I have had several people checking in because they were planning on coming over (hopefully no one just shows up, that could be pretty awkward), but I know who may or may not read the blog anymore (which is completely understandable, the blog is not all that exciting if you are looking for the “raw and real” mid-cancer-treatment bonanza that was my life, it has evolved to the “meanderings of the post cancer treatment mind of Mandi” and she gets a bit more grumpy, or is more willing to post the grumpy stuff… you decide ). Either that or they are in denial over my surgery in a week, if that is the case, we can be in denial together.
Today marks the 3 months since my last day of radiation (yay!) which means I am officially qualified to get breast reconstruction surgery as of today (amazing that it takes that long for things to recover in there enough to be ready for surgery). I was actually scheduled to go in tomorrow (call me a go-getter) until they moved it to the 27th a couple of months ago because my surgeon will be out of town. The skin has healed up well from radiation, I have a permanent “tan line” under my armpit from tattoo to tattoo, but it isn’t very noticeable. The general area where they radiated did pull the expander up tighter to my body, the general area is stiffer (the plastic surgeon said he was going to have to lower that one to get them to sit a bit more evenly). I will be seeing my Radiation Oncologist for a checkup on Thursday.
The reason I have to have a lat flap breast reconstruction (where they take a muscle from my back and burrow it under my armpit and create a pocket for an implant) was because they have to bring blood flow to the radiated breast (and I haven’t enough spare belly or butt to transplant tissue from those places). I knew that this was really the only surgical option I had if I chose breast reconstruction after consulting with a couple of plastic surgeons (and trying to find any other option, but wasn’t given one, especially after my first surgery failed).
They use the muscle to increase the likelihood that my body won’t encapsulate the implant. It is also to help the skin and nipple survive surgery due to radiation damaging the skin and blood vessels in the area. I had to have a lat flap reconstruction on my right side after I failed to heal from my mastectomy, so I have been down this road before. Almost there!
I love my friends, all of you, each and every one. I have to butter everyone up before I mention a topic that has come up many times with friends. I probably would have said something similar in your shoes… The topic: my “free boob job.”
In January when I was getting my mastectomy my friends would comment that at least I was getting a free boob job out of everything. That is one of those moments I would bite my tongue, take a deep breath, smile and laugh. My response “yes, if you would call it that…” With my next surgery coming up, it is a comment that I am hearing again. I don’t know how you are supposed to respond to someone talking about breast reconstruction and I understand where the comment comes from. I can have a tendency to say the wrong things when people tell me something about cancer or something related to a traumatizing event in their or my lives. I am not totally offended, it just makes me uncomfortable, so I figured I would bring up the topic so that it is something that people are aware of.
I was discussing this type of comment with a friend who had had a mastectomy on one side and when they replaced the expander with an implant they also placed an implant on the other side. They do this to try and even things out, because breast reconstruction can include modifying the other breast to make them match as good as they can. I described my predicament with people commenting on my “boob job.” She commented that breast reconstruction is really a “salvage job.” Which is exactly what it is, making the best out of a bad situation.
Mind you, at the moment my breasts are in fact larger than they were (but not by much when it comes to cup size). A difference is that the real ones don’t stick straight out straight from your body and they aren’t as hard as a rock. I do have to buy different clothes to hide the scars, but the surgery has also made certain other clothes look more appealing due to my new shape. Underneath that clothing is 3 major scars (soon to be 4) at least 4-5 inches each and about 15 or so small scars where the drain tubes came out (yes, those big things leave a scar). As time passes the scars smooth out and lighten in color. They are reopening the ones on my chest in my surgery on the 27th (the left scar will be cut out and replaced with a patch of skin from my back as they pull the latissimus dorsi around). I don’t post any picture of my scars in front because they look enough like breasts that Mike is uncomfortable with it (covering up the nipples doesn’t make him any more comfortable with it). I had a picture of the really funky stickers and lines from getting lined up for radiation, and it got a “no go.” Which is ok. I have posted my back so far here.
I had always planned on having breast augmentation done when gravity started to get involved, so trust me, I take no issue with boob jobs, my surgery just isn’t that…
Am I bitter that I lost my breasts? No. I mourned their loss, I miss them sometimes, and I get sad about it. I am delighted that that I have the opportunity for reconstruction and that I didn’t wake up from my bilateral mastectomy completely flat (although I did flip out a teensy bit when I found out that I had to have a lat flap and that was just about my only breast reconstruction option). When I had to have my breast expander removed on my right side I did go to a dark place. At that point in time I was so worn out and tired of fighting, that the combination of everything really did pull me down for awhile. I chose to take some time away from work because I had two more chemo treatments left (that made me miss work because of the leg pain) and I had a reconstruction surgery coming up that I needed to try to heal from if I was going to get that expander back in. This gave me some time to face my demons and get back to a good place where I was healed and well enough to return to work before radiation. Life is too short to be angry.
To some this surgery may seem optional, to others it may appear to be less optional. Whatever your opinion, it is a nasty icky surgery, I have done it once before, but it was worth it. My sanity prefers a little cleavage in my life.
Regarding free: These puppies cost about $200,000+ (my hospital is $20k a night just for the hospital stay alone, I have good insurance, so that isn’t really what it costs me, but it puts things in perspective).
Size: I know the girls that have actually had boob jobs want to know the cc’s. They will be 500 cc’s which is huge if you actually have something in there with it (which there isn’t), apparently my lastissimus is little because it doesn’t add much bulk… I was at 510 and 470 on my expanders (which I had no idea about until today, I hardly had any expansions). They will put in silicone, and I love my doctor, he is the best.
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!