June 2011 archive
It is true, I am a darker shade of bald. I bet you didn’t know that there are multiple shades of bald. It is ok, neither did I until I was doing my morning close inspection of my bald head and noted that it was definitely a darker shade. Hair is starting to come in “other places” where I lost it first (I am a gentlewoman and won’t give more detail about where, I am sure you can figure it out ). My head was next on the lose hair list. I know it will take awhile before the full head of hair comes in, but for now, a darker shade of bald is pretty exciting!
I am pretty much always running around bald this past week. Hats + hot weather + hot flashes + percocets make me swoon. Mike set up a fan in the bedroom that points at me and runs all day long. I have been a good patient and have kept myself mostly bed bound since I got home Friday. Part of that is because bed is really the only comfortable place for me to sit for long periods of time due to the incision on my back, which I can lay on top of comfortably in bed (memory foam on top of a pillow top makes for a nice squishy spot to lay down in). I am slowly starting to be able to sit other places a little more each day.
We have had a good week of visiting with family and friends. I appreciate everyone that has been feeding us! I am impatiently waiting the day I can cook again (which has been fairly limited since January with all of the surgeries). I am excited to have a break from surgery for 5 months (the lat flap on my left side and swapping the breast expanders with silicone won’t happen until December).
I am waiting to schedule radiation until I get my drains out and have the opportunity to expand the new breast on my right side to match my left – because changing my body after they have mapped me for radiation is a bit of a no-no (they map to avoid important things like your heart and lungs). My plastic surgeon wants me to get all of my drains out first also (I got 2 out today, the next 2 will probably come out next Wednesday). So, for now I heal and wait, and hopefully get an even darker shade of bald.
I didn’t write much or really do much on the computer this hospital stay because it hurt to type and dilaudid somehow makes everything super blurry for me (I can’t read the computer screen very well).
Markings for the lat flap surgery.
They had me scheduled to get prepped for surgery at 10:30 AM. Which had me a little worried because that meant I was most likely the last surgery of the day for my plastic surgeon (4 hour surgery that I figured would start around 12:30). They actually got me through surgery prep a lot faster than I had expected and surgery started at around 11:30 AM. The plastic surgeon came in and marked me up with a pen. Mike remarked that the markings were like the ones in Nip Tuck which I have been watching a lot on Netflix. I am sure my plastic surgeon loved that I was watching a show with very unrealistic plastic surgery results right before I have a big surgery (and miraculous recovery times). After he marked up my front he proceeded to mark my back (I had seen pictures several time of the back drawing for the lat flap). They mark what skin they will take up front with the latissimus dorsi, I have no idea how he just eyeballs it, and knows it will match up.
Holding onto my bucket because I am not feeling so good.
The next issue at hand was my IV. My left arm is not allowed to have IVs, blood pressure or anything on it that could cause lymphedema (pooling of the lymphatic fluid). They couldn’t put it in my right arm because it had to be in the sterile zone and they would have to flip me during surgery. This left my feet. Anyone who has ever had an IV put in their foot will attest to why they don’t put them in your feet. I asked that they give me laughing gas before they attempt it – the anesthesiologist thought this was an o.k. idea. It took them four attempts at 4 veins in my feet before they were successful (OUCH!) I was giggling through the first two attempts (must be why they call it laughing gas).
The surgery lasted the whole 4 plus hours and I was pretty darn cranky when I woke up (part of it was because they were telling my family they had my pain under control and they didn’t). I was very nauseous. Unfortunately they didn’t get me in the comfortable zone until well into the night (the nurse was able to get me ahead of it). Mike snuck a picture of me when I zonked out in one of my nauseous bouts, which sadly really shows what my day was like (not going to sugarcoat it, I didn’t feel good). The evening nurse was able to get me comfortable and I actually slept really well that night.
The next day was going pretty fine, pain was under control and my dad came to keep me company. A doctor came in to talk to me about the fluid in my left lung (WHAT?!?), the strong possibility that I had a blood clot (HUH?!?) and the x-ray they took of my lungs the night before (I don’t remember an x-ray?). I told him the doctor that morning had wanted to get me on oral pain meds so that we could start the preparation to send me home. The doctor looked at me and told me I hadn’t been on pain medication all day (the
Incision on my back, 4 surgical drains (the white around my waist is vecro that I attach the drains to).
machine said it was giving me medication?). I was in shock. The doctor walked out and my dad walked over to the machine and looked in the part with the diluadid and told me that it looked like there was medicine in there. Mike called and I told him about the fluid in my lung, blood clot and I had somehow had an x-ray taken that I don’t remember. 5 minutes later the doctor came in and apologized, he had wrong patient……….. I called Mike and told him. I was glad I wasn’t crazy, I guess the doctor mentioned to my nurse that I was “out of it” and their discussion pointed out I was in fact aware of what was going on, the doctor had the wrong person. I am going to assume he was a med student, I hope he doesn’t make that kind of error twice.
My dad stayed with me the rest of the day, Mike came by after work, and my mom and Steve drove down after mom’s birthday dinner (happy birthday mom!!!). I was feeling well, a little sore, but pretty darn o.k. Just before bedtime they switched me to oral pain medications. Friday morning they were ready to send me home. I was nauseous again, but was ready for a shower and my own bed. My dad took me home. My aunt Sonnie drove down to have lunch with my dad and they explored the grocery store for two hours looking for a variety of edibles for me that I could try to get down when nauseous. They stocked my fridge with a bunch of goodies so that I had something to take with the pain medications.
Mike has been doing a great job at trying to keep me comfortable now that I am home. I have been trying to rest as much as possible, but this surgery isn’t an easy one (not that any are “easy”). Hopefully I will be feeling even better in the days to come.
A dark purple with a pretty flower.
It is true, they were squealing like wee little piggies going wee wee wee all the way home from getting my FIRST pedicure since January’s pre-surgery pedis. My one chemotherapy wish was to get a pedicure once I was past the laws and limits of my immune system. Today marks just over two and a half weeks since my last infusion and by now my immune system is well enough to fight the beasts (bacteria, fungus, whatever beast a stronger immune system is needed to fight) that cause the avoidance of such activities.
I am not allowed to have fingernail polish on my fingers, but pretty toes are allowed for surgery. Mel bought me a cookie basket with flip flops to celebrate the anticipation of my being able to get pedicures after my final chemo treatment (she came along to keep me company during my pedicure, but do to a recent incident of her foot running into a tattoo gun, that made a tattoo, that she wanted, on her foot… she couldn’t get a pedicure also). Michelle came and got a lighter shade of purple.
I do have obvious lines in my fingernails and toenails from each Taxol treatment. My nails are cut super short because they lift super easily if I get them caught on something.
I spent my morning up at the U of U and Huntsman. My mom had some concerns that my fingers/fingernails were showing some signs of clubbing - which when you see serious cases of clubbing, it is pretty intense, my nails just curve a bit funny at the moment. Clubbing can be caused by problems with the heart or the lungs. Taxol can cause some big abnormalities with your fingernails and toenails, but between the clubbing and the tachycardia I have had since the Adriamycin chemotherapy, it seemed wise to double check the function of my heart before I go into surgery. They tested my heart and it came back at 51% (which they say is normal), but my heart used to be at 72% (which I assume must be better than normal), I believe the nurse was talking about “pumping strength” when I look up information related to echocardiogram results. They are going to check my heart again in September to make sure it is improving rather than getting worse (and I hate to say that this big of a difference may be one of the reasons I get worn out so much easier, but I am not a doctor…).
My Oncology Nurse Practitioner also did labs to check on everything, especially my white blood cells, red blood cells, platelets etc. to make sure that I am in tip top condition to heal from surgery. Everything came back fine, they will also check these again in September before they start me on Tamoxifen.
I also asked about what to expect with my menopause situation, not that I am complaining about not having Aunt Flow (Flo?) come visit once a month. I have wicked hot flashes that I get every day and a lot of them. They are a bit embarrassing, and just not my favorite thing in the universe (plus I am not super excited about running on that much less estrogen for the next 60 years of my life – you bet I am going to be kicking a** and taking names at age 90). She told me that I WILL (due to my age) get my monthly visits back, but WHEN is very up in the air. It could be a month, two months, or even a year. Radiation and Tamoxifen can play a part in when she comes to town to say “hello.” I will leave the guest room prepped for her arrival (don’t you love euphemisms).
Tomorrow is the big surgery day, I am pretty nervous, but ready to get rid of these STITCHES AHHH!!!! A few people weren’t quite sure what this surgery was exactly – this is a latissimus flap breast reconstruction on my right side to place the breast expander back in. In December I will have a latissimus flap breast reconstruction of my left side and at that time they will be able to place actual breast implants on my right and left side (my aunt describes her surgery here, which was on her radiated side like I will have done in December). Anyone want to make bets on how many JP surgical drains I get this time? Four? Five? Six?
The week before my bilateral mastectomy I pondered taking a photograph of my breasts so that I could remember what I look like (sorry guys, not too many nude photos floating around featured yours truly). It may seem minor, but I was thinking about it because I knew they would never be the same.
I didn’t take a picture. I realized that I could not bring that piece of what would become my past forward to haunt who I would become. I can’t spend the rest of my life trying to undo what has been done, and dwelling on what had been. I am just over a week away from a fairly major surgery that I will have to do twice, rather than once, because it was the circumstances that life chose for me. I have walked in the shoes of women who have had a mastectomy and lost their breast, I have learned to stuff my bra and wear my clothes as if nothing has changed. Each time I look in the mirror I know something has changed. I have a deep respect for women who decide not to undergo the extensive process of breast reconstruction.
I am incredibly nervous about the surgery and this is the first time that I will have surgery and Mike won’t be able to be there when I wake up (unless they schedule me late in the day, and you usually don’t want to be the last one of the day with a major surgery). Mike was laid off from his job in May, his company decided that they would roll up the functions of the IT team (along with several other departments) into the office of the parent corporation, leaving several people at his company without a job. Mike is so talented and has such a diverse skill set he managed to get a great job within a fairly short amount of time. A new job means he needs to stay at work and show what a great employee he is. I have lots of amazing friends and family members who will be helping out, but it will be hard on us both.
The “take a picture” question has come up again (maybe because I did all of those photos of me bald). I think part of me wants to remember what it was like to live without a breast and to live with stitches for 99 days so far this year (not like I am counting… ). Sometimes the trials and challenges life brings us can teach us what does and does not matter. Emotionally I thought having a breast mattered most at the times that I lost it, but losing it taught me that quite frankly it is something on the surface and it is the fact that I am alive surrounded by people that I love those that matters the most.
A note for those that volunteered to bring food after my surgery on the 22nd, I need the email address that you would like to use for the http://www.lotsahelpinghands.com website so that I can give you access to sign up for a day. I set it up electronically to try it out, as my memory is a bit less functional when I have had surgery (and those pain medications).
It had been suggested to me to take some bald photos, because I will want them later. Which is probably true, I am not exactly going to be able to block out the experience of breast cancer and losing my hair – so I may as well have fun with the good and the bad. So, why not go all out and have the pictures professionally done by the amazing and awesome Jenny Bauman (her website is: http://www.jennykphotography.com/, feel free to “like” her Facebook fan page, because clearly, she is awesome). If you missed my glorious mohawk when we shaved my head you can check it out here, I thought I was bald then, but little did I know how bald I truly would be). Without too much ado, presenting bald Mandi:
Keeping it real in the grasslands of Utah.
Being silly, I think I can fly!
I call this one "urban Mandi"
Walking by the barber shop bald made us giggle, so this was the result.
Sitting on the dock, trying not to fall in!
I look innocent, muahahahahaaa.
If you have some strange desire to OWN your very own bald prints of the one and only bald Mandi, you can http://clients.jennykphotographyanddesign.com/mandihudson” target=”_blank”>order them here.
Making lemonade, with real lemons.
No really, I was actually making lemonade this time, with lemons and a juicer. My father-in-law visited town this week and brought me a juicer and a bag full of lemons (along with some beautiful pink roses), so that I could make lemonade like I keep promising figuratively, but not really doing literally. So why not mix a bit of both?
This past week has been a balancing act of taking advantage of every spare moment that I have felt good and doing absolutely nothing when I haven’t. Friday and Saturday were the typical “feel fine,” we went out to a friends birthday party Friday and enjoyed some BBQ and a bonfire. It was a gorgeous day to sit outside and soak up the fresh (with a mild scent of bonfire) air. Saturday evening I started to go downhill a bit, but was feeling fairly ok. I spent the day at IKEA with my little brother so that I could get some shelves and items to organize my office/workout room/guestroom/reading room (that room has a lot of uses). I actually started to consider the fact that maybe I wouldn’t really feel the chemo this time, haha, yeah right…
Sunday I woke up with the pains, so I took my medications and BAM! It actually worked, as in 100%, took out my pain and I felt reasonably normal (as reasonably normal as one feels on a Lortab 10). My little brother came over and spent Sunday morning with Mike and I, organizing and tidying up my room (Mike also mowed the lawn, pulled weeds, trimmed shrubs, cleaned the whole house… busy man!). I kept him company while he did all of the dirty work, although soon I will no longer have a moratorium on touching dirt, so I may have to come up with another excuse to get out of yard work. We got it finished up and spent the evening sitting on the back porch doing nothing but enjoying the weather and some relaxation time together. It was absolutely amazing.
BBQ Mandi, with extra BBQ sauce… or something.
Monday I woke up and it was the same Monday post Taxol kind of morning (I woke up, I was sore, I took a Lortab and I went back to bed). Amber was coming over to check out what books she may have wanted off of my bookshelf (I was cleaning out the books, with the fact that I rarely read a book twice, and I have a Kindle and iPad, they were just taking up space so that I could show off the fact that I like to read). She was nice enough to drive me around town because Mike’s dad was coming into town and staying with us and we promised dinner. Although I wasn’t feeling super awesome, I was feeling good enough to leave the house and walk around for a few hours, which is an amazing accomplishment on a post-chemo Monday.
Pink roses from my father-in-law.
I spent what I swear was practically the entire day on Tuesday getting a second opinion about my surgical options. I learned that I seriously don’t have any options other than the latissimus flap surgery, so I should stop kidding myself that I have an alternative choice. I also learned that maybe I do like my plastic surgeon (we have definitely had some real bonding time these last 4 months, and I am appreciative of the fact that he did everything in his power to try to keep me healthy and not take out the expander because it was important to me). I liked the other surgeon, but she definitely comes from a different world than the Huntsman crew, and for now I think I will keep my eggs in the Huntsman basket. The second surgeon did not want to do any operations on me at all for 6 months post chemo, which sort of made sense, but sort of did not. This has caused me to do some serious thinking about timing of surgeries, and strongly considered postponing my surgery scheduled for the 22nd. After some deep thought I decided to go ahead as planned, because that is still my best bet to do my final surgery in December so that I can start 2012 afresh (I have to have a minimum of two surgeries no matter how I go about it, so I would rather get one behind me while on disability with time to heal as I had planned).
The neuropathy is still about where it was before this last treatment. I am hoping that the Gabapentin will knock it out, but it can take several weeks before it really becomes effective (or they may need to increase my dose to get them there). So I am still in hold mode to find out if the tingles and the numbness goes away in my left hand and feet.
I also spent some time Wednesday and today at the office interviewing candidates for some positions that the office is hiring to add to my team while I am away (seems a bit strange, but July is a long time to wait to begin the hiring process when the team needs help now). It was nice to stop by the office, but helped me come to the realization that I still need some time to heal and get my stamina up a bit more, and that having the time to be sick when I feel sick has been good for me.
Next step: Get my radiation scheduled after my surgery on the 22nd!
Mom and I at my final chemo treatment.
I had my 8th and final chemo treatment today, for the sake of my sanity. Cancer treatments come with a lot of decisions, unknowns and best guesses.
I am in a study that tracks my chemotherapy side effects, last Friday my responses must have set off bells, whistles, sirens and all sorts of noisy contraptions. The Nurse Practitioner assigned to follow me called me to get the details on my neuropathy (and pain, I have had an unusual amount of pain, and it extends for a longer period of time than it should). She wanted to start me on Nuerontin (Gabapentin) which is a drug for neuropathy.
She called my Oncology nurse to verify that it was ok to go ahead and prescribe the medication. The Oncology nurse called me to get the details. My feet and left fingers feel like they are asleep constantly, it showed up almost a week after my chemo treatment and hadn’t gone away. I would also get tingles shooting up and down my calves and upper arms, which my hands and feet went asleep off and on many many times before the sensation stuck around. She talked to my Oncologist who determined that the risks associated my my neuropathy may warrant that I not have another chemo treatment.
This sent me in a tailspin. I know that the reason they set up the treatments the way that they do is because they have tested their effectiveness in various groupings, using a different order, against different types of tumors etc. They opted to use a very aggressive chemotherapy treatment on me (every two weeks rather than every three weeks, Adriamycin which is one of the heavy hitters etc.). I thought about it a lot the past week as they told me that we could talk it over and decide today what to officially do.
Surprise waiting for me when I got home from Scott and Mel!
The Oncologist medically felt like the additional Taxol treatment could have about 1% impact on chances of recurrence (which to me is A LOT), and that medically I did not require it. Her best guess on my neuropathy is that it will probably stick around for a year or so, and it could get worse with a final treatment. They were also concerned about my pain levels. She put it all out there, but I knew that if I didn’t do the final dose I would spend the rest of my life wondering if I should have done it. I don’t intend on doing chemotherapy again, so I decided that I wanted to go ahead and do the entire chemo treatment plan for at least the sake of my sanity (AND my song and certificate, you can’t forget the song and certificate).
She lowered the dose by 25% and opted to not give my my Nuelasta shot (although we are saying we did it for the plastic surgeon, she felt like my immune system will not take a dive on this amount of Taxol, the Nuelasta was a “just in case”). The Nuelasta shot could be involved in creating the bone pain I have been experiencing and they want to do what they can to keep the pain down. They also upped my Lortabs to a bit higher strength for those first few days that walking is a challenge.
So, 8 out of 8 chemo treatments complete, I am DONE! Just have to make it through the side effects next week. We also were able to bump up my surgery to the 22nd of June, and there it sort of stays… I am getting a second opinion from another plastic surgeon Tuesday, just because I want to explore my options on fixing the sad and sorry lack of a breast. Moving up the surgery date means I get to start radiation a week earlier also. Yay!
My chemo graduation certificate!
My chemo graduation song!
My little brother brought me a bouquet of flowers yesterday.
I figured menopause would come sooner than the last couple of weeks as it is a common symptom of chemotherapy for breast cancer. I am now certainly glad it waited to rear its hot ugly head.We will limit the discussion of this beast to its most obvious side effect: hot flashes.
I think Mike keeps thinking I am crazy as I throw the dogs off my lap and start gasping for air (I have no idea why I gasp, you would think fanning myself would work better, but no… I gasp). It comes in waves, one flash after the other of pure head to toe heat. Leather chairs and couches appear to not be supportive of my cooling off efforts. My mom bought me temperature controlled moisture wicking sheets which have been a great help, but I still have to throw the covers off a few times throughout the night.
Mike came home the other day and remarked that the house was incredibly hot and checked the thermostat to discover that they AC wasn’t turned on. Now I have to check it regularly when it is sunny outside because I haven’t a clue half the time if it is on or not (the weather in Utah has been all over the place, summer hasn’t come yet, we have only had a few warm days, the rest of the time I have been convinced we were living in Seattle). Heat seems to kick in the flashes a bit more often, so I am probably a bit lucky that it hasn’t opted to get hot outside just yet.
It is anyone’s best guess on how long I will be in menopause. Normally it goes away a few months after stopping chemo, but the Tamoxifen I will be going on for 5 years can start it right back up again.
I have found that scarves work better in the heat and with the hot flashes, so I have recently switched to wearing scarves over the past couple of weeks. I keep thinking about the fact that I am getting closer to having hair again (oddly enough I miss my eyelashes more than the hair on my head). I did lose a lot of my eyebrows, they are a bit patchy and funny looking. I still have some hairs here and there on my head that continue to grow, so I never went completely bald.
I am a bit nervous about my appointments tomorrow. Tomorrow is what is/was supposed to be my final Taxol infusion. I am still going in and meeting with my oncologist to discuss why she opted that it was better for me to just stop now rather than have the final treatment (more on how all of that went down in a post tomorrow). They left my infusion appointment open in case I decide to still have them still give me the last infusion. I have an appointment with my plastic surgeon in the event that chemo is 100% over to see what can be done about bumping up my surgery date, June 29th is a long time to wait if I am done with chemo (I am also having some serious nerves about doing the lat flap surgery and want to discuss it more in depth). I would like to get the surgery over with, get radiation started and get my butt back in the office.