July 2011 archive
Today I had an appointment for breast expansion and a separate appointment with my Radiation Oncologist now that Gus the drain is gone. I had a little fluid build up that decided to start Monday afternoon after I had been working all day. Ok, maybe a bit more than a little bit, so I worked from home Tuesday. Monday was the only day I didn’t keep things a bit contracted and wrapped up, from my previous experience of fluid retention in February I learned that a little compression (very loosely wrapped bandage) can really offer relief. The nurse felt like I should hopefully be able to reabsorb the fluid and thought that the fact that it took me 4 days to get fluid build up was good (remember, I have a tendency to be fluidy). You would think this wouldn’t be an issue over 4 1/2 weeks after surgery, but I am a miraculously bad patient I have decided.
I showed up for my radiation appointment figuring my radiation oncologist wanted to say “hi” after she had suggested that I start radiation 3 weeks after I finished chemo (June 3rd was the final day). Instead she had decided that today was the day I got my body mold and tattoos done. So, I am officially prepped to start radiation. They build a body mold and do a CT scan with you in it to plan your radiation therapy around your organs. At least I know that they care about me on the inside (I am full of bad one liners lately).
After they put stickers all over and do the scan they go ahead and point lasers at you to find the points on your body that you will have
tattoos. The tattoos and the body mold are how they line you up for your radiation therapy. I expected the radiologist to come after me with a tattoo gun, but instead he dropped a dab of ink and twisted a big needle in the ink (which may seem scary, but I have feeling back in the skin of my left breast. If you SAW the size of the needle that they use to do breast expansion, that goes ALL of the way in, you would understand why I find this little tattoo process to be nothing. Either that or 4 attempts at a vein in my foot have made me numb. Hmmmm… I seem to have a high tolerance for needles these days).
I have 6 tattoos I think (I will have to look more closely). I radiation range includes the lymph nodes in my neck near my breast along with the lymph nodes under my arm. Yet more evidence that I get the glorious “kitchen sink” treatment. These tattoos are tiny little dots. I made a comment about tattoo removal to the hospital employee, but after seeing them, they really aren’t all that bad. There are two in the photo, they are more pronounced because they are still red from being poked around.
The first 5 weeks of radiation will be my whole breast and surrounding area. The last week will be targeted at the area around my scar (which I thought a bit unusual), thus 5 days a week for 6 weeks. I asked my radiation oncologist why they hit the scar (I am a bit nervous about scars opening up, call me crazy)? She explained that with the particular mastectomy that I had, IF the cancer comes back, it is typically in the area around the scar. Fun.
After worrying about starting radiation late, it turns out my dry run isn’t until the 5th of August. I start actual radiation on the 8th. I will be done mid September, which makes 3 month later December. Thus, sadly, just barely 3 months after radiation I am scheduled for my lat flap on my left side, which will be on December 20, 2011.
Also, apparently having my hormones back (menopause is officially over), being done with chemo and having recovered most of the way from surgery means I am ba-ack (ie. sassy and as big of a pain in the butt as ever, but sick Mandi is boring). They told me that I should get fatigue after 2 weeks in radiation that will stick around through the rest of treatment and a few weeks after, I am hoping it is nothing like chemo.
I'm on a boat!
Wednesday we (by we I mean Amber, my super awesome employee that got a huge award from the university this week, because that is how awesome she really is), named my surgical drain Gus (Joan came up with the idea that it needed a name at this point). This is all evidence that I am back at work. I did manage to put in a decent part time work week (although there were several times I got sent home by my staff because they felt I was pushing more hours than they felt defined part time, I have about 10 moms at work of all ages, but I love them all).
Gus was much easier to discuss once he had a name, but I was getting to the point of extreme aggravation that he was still around. I didn’t want to rush taking him out because I was a bit nervous about my previous incidents this year. I was supposed to have started radiation by now, and would be further along in my treatment but my drain was being a drain (that joke is brought to you by my father).
Surgical drains come out based on how much they drain (you have to empty them a couple of times a day). You remove one when the output is in the zone that your body will absorb the fluid on its own. Gus would average the proper amount, but would spike to just at the “almost ready” zone to the “yank me I am done” zone. He has been doing that for over a week. Ready, not ready, ready, not ready… I called the nurse Friday just to get her thoughts on the matter (because yanking it now also meant that I would get expanded, which potentially fills up the space that the fluid does). My doctor is out of town for a couple of weeks, and my drain output just kept not behaving while he was in town so that he could do the first expansion as initially planned.
I was so borderline, but the next opportunity to pull Gus out was 4 days away. The nurse felt confident in taking it out as long as I promised to take it easy over the weekend (my first concern was whether or not the incision would open, it was made clear that I am well out of that risk zone, also I was reminded that having had the surgery that I did I am in an entirely different ball game when it comes to healing because I have a blood supply in there now). Well… taking it easy meant doing the things I worried about doing with the drain in: boating and camping. I asked if no activity meant I could go camping (which meant sitting in a camp chair, not packing and unpacking a camp site), she felt this was ok. I then asked if it also meant I ride on a boat (which she seemed surprised that I was asking, but normally I help launch the boat and pull the boat in on the trailer). She felt that riding on the boat would be fine. As a precaution I am still on antibiotics as the excess fluid if it builds up is an infection risk (the drain itself is an infection risk, so you stay on antibiotics as long as it is in, so I have been on them the last 4+ weeks).
Boating with a fuzzy head.
Friday morning I looked in the mirror and realized that there weren’t any “shiny” spots left on my head. I came to the conclusion that I was so tired of hats and scarves that I was going to let it all hang out and just go with what little hair I have now and pretend like I am making a major fashion statement. I was incredibly self conscious at first, but got used to it later on.
Friday we really went camping! It really felt like the first time I had done anything all summer. I tried to take it as easy as I could. I was pretty exhausted when we got home Saturday morning. So I spent Saturday napping and lounging on the couch.The next task at hand was boating, and doing the task that I had avoided emotionally all year: buy a swimsuit. I had Mike take me to get one, I had researched the styles that were around this year and felt that a tube top/tank top style would keep my scars covered up. It turned out to work out just fine in that department, and I learned that a tube top actually stays up when you don’t have real breasts. I also pulled out my cover-up that protects the area that will be radiated soon.
We slept in on Sunday and managed to get the boat on the water before 2 PM. The boys water skied and we relaxed listening to music it was definitely a good time.
I find out Tuesday when I will start radiation!
This is my fuzzy and I shall call it my fuzzy. 1 1/2 months post chemo.
Today was my first day back at work after I went on short term disability in May after I had to have surgery to remove my breast expander. Taking time off of work was bittersweet. I was so worn out that I couldn’t make it to work and heal properly, but I really didn’t want to have to take an extended leave from work. Between three surgeries and chemo every two weeks my body had had enough. I feel like I have rested and recuperated. My body had a good amount of time to heal after my fourth surgery this year which was the breast reconstruction on my right side.
Although I am a bit lopsided, as things heal and I am definitely glad that I did not have the lat flap done on both sides at once (although if I had, I still would have had the “swap” surgery left – which is when they switch the expandable breast expander with a permanent implant). I will get an expansion on my right side and even things out a bit more after I get this final drain removed. The surgical drain has been a bit all over the place, I can’t guess when it is going to be ready just yet, after my previous complications I can’t push to get it out too early, especially now that I am back at work.
So far it appears that I have the same hair color (which is bottle blonde with no gray, once it is long enough to dye blonde ) and I am not sure if it is any curlier or not. It is certainly growing everywhere it is supposed to (you would think that the world would be nice enough to selectively grow hair where I would like it to grow and wouldn’t grow it where I would like it not to right?). My eyelashes and eyebrows are growing in bit by bit. You tend to shocked at the rate that you lose your hair, but I tend to be a bit more surprised at the rate that it comes back (except your head, it needs to grow faster on your head). Little baby hairs are coming in everywhere.
My back, Mike says it looks amazing and looks wrinklier because of how I was standing.
My back now feels completely healed (the scar, the lower back still gets worn out the more I am upright, but that back pain is slowly going away). The surgical glue and the scab are completely gone off of my back and now I just have a thin red scar that should be invisible as time goes on as long as I take good care of it. The front isn’t quite as healed, but it seems to be healing nicely. Three weeks was the required date for time to heal before expansion, so I imagine I should be healed up under the glue nicely from the areas that I can see the scar so far.
I am still waiting to schedule radiation. My surgeon won’t clear me for it until after I have the final drain out. I will have radiation for six weeks for five days a week once I start.
Flowers from my dad.
Today I was scheduled to get my final drain out (3 weeks! I have had this thing for 3 weeks!), and I had to call and cancel my appointment because it isn’t ready yet (grrrrrrr). Not only was it just a few cc’s above the needed amount for the last 5 days, today for good measure it opted to jump up to be 10 cc’s over the amount to get it out this morning. My first expansion was also planned for today, getting it done would make it so that I can actually schedule starting radiation. Now I continue being in hold mode wearing my BFF, the dreaded drain. I am rescheduled to go in Friday, cross your fingers that it decides to chill out soon. I had originally hoped to have started radiation before I went back to work.
I go back to work Monday! (it can be part time if I am not up to a full day). My stamina is still somewhat limited. I am getting a bit more active each day. I started driving the end of last week (freeeedoooomm!!!!). I tend to ache mid evening and I discovered that having your latissimus dorsi removed from your back really impacts your core strength. If I am up and moving around for a few hours I start to experience lower back pain. I imagine as I get my stamina up and start exercising I will find this occurring less and less.
Menopause from chemotherapy started for me about mid-May. I have been battling night sweats and every other crazy side effect that it causes. Unfortunately for women with breast cancer, almost every solution for menopause and its symptoms involve estrogen. Estrogen creams and pills and lots of the hormone that no doctor will ever prescribe for me for the rest of my life. My breast cancer cells were 90% estrogen receptive, so for me to take estrogen is like adding gasoline (and maybe some gunpowder) to the fire. I struggle with the fact that estrogen is dangerous for me, but I am not sure I want to live the rest of my life with so little estrogen.
Menopause is what happens when your body stops releasing eggs and cuts back on its estrogen production from your ovaries, guess where you go when your hormones start back up? You become a teenage girl! I had cramps one day and got super excited (YES, excited over cramps). My thought was that I was possibly ovulating or maybe starting to menstruate.
A few days later I started having crazy bursts of crying and all sorts of emotional craziness that would make anyone’s husband’s head spin (my husband stayed somewhat sane because he just knows I am cancer crazy these days). I am talking emotional fits about having a child (whooooaaaaaa if you know me, kids have not really even been in the “maybe” zone and all of the sudden I am freaking out about maybe not being able to have them). After these crazy emotional outbursts happened a couple of times I realized that this HAD to be hormonal, I may be slightly crazy, but not this kind of crazy. My hot flashes are fewer and further apart (rather than a few an hour I have a few a day). So I think it is reasonable to assume I am going to come out of menopause sooner than I had expected, this is not confirmed yet, but it seems to be the case for now.
Embarrassing story for the day (not that discussing my emotional outbursts over babies aren’t embarrassing enough). I was at my family reunion this weekend wearing a sleeveless shirt and lifted my arm. I discovered armpit hair under that arm. I didn’t have a little bit of armpit hair, but A LOT of armpit hair. I hadn’t even bothered to check them in the past few weeks! This means this week I shaved my legs and armpits for the first time!
I also look like I have a good amount of fuzz on my head. I need to get Mike to take a picture of it so I can share my fuzziness.
Combating menopause one spray at a time.
It has been a wet spring, and we were all starting to wonder if it was going to actually become summer. Summer has finally decided to show its face in Salt Lake City, so it is hot hot hot (we don’t have humidity here, so it is a dry hot).
Several days after surgery I like to start to test the theory on when I can stop taking painkillers, because stopping them means I can drive. Whether or not I actually drive is another story, but the ability to drive makes me feel a lot less claustrophobic. I am mostly weened off the things, but have to be pretty careful on what I do so that I don’t aggravate where the muscle has been attached inside my chest (that area can get pretty sore if I am not careful – and it is where the dreaded drain is located that may decide to be difficult on when I get to have it out).
Recovery so far on this surgery is definitely much more than any of the previous surgeries. I get winded taking a shower. I am exhausted walking 100 yards. I have mostly been in bed, so I imagine it is going to take me a bit to get my stamina back once I am past the two week mark and can be a little more active (3 weeks and I probably can start exercising again). The incisions that I can see look like they are healing nicely, I need to ask the doctor how long I am going to have “side boob,” where they tunnel the muscle under the arm pokes out a bit so my arm can’t lay flat against my side. It looks like my boob is wrapped around my side. My understanding is that it will actually be about a year before the muscle really learns to be a breast rather than a back muscle (I seriously want to know who they convinced to be their test subject on these surgeries!).
Flowering tree in front of our house.
This past week I did get out for a few hours here and there. My little brother took me to Huntsman Cancer Institute to get my drains removed and I was able to go out to lunch with him. I have to eat left handed, which makes me look kind of funny since I am right handed. The nurse told me that they chat about me all of the time and I am one of their favorite patients (how awesome am I? Haha, the nurses say I tend to be a lot more energetic and goofy than their other patients. Although they have seen me in tears plenty of times when I have had all of the surgical complications). My friend Michelle came and hung out with me, we went to lunch and picked up my prescriptions. We spent hours on the back porch with our newly purchased heat combating arsenal known as spray bottles with fans attached to them. This fan has been the best thing ever for my hot flashes, and makes it easier for me to spend time outside enjoying summer.