March 2011 archive
Mike is sooo excited for me to go to surgery again.
No one ever said breast cancer was easy.
I remembered late Monday night that I had a follow up appointment today to my appointment last week related to my surgical wound opening back up and looking infected. The wound had been looking a lot better this week, so I didn’t think about it too hard when I drove myself to my appointment. The surgeon looked at it my incision and the wound had opened up even more, again, which was enough to show the expander underneath (which was slightly visible last week, but I am getting used to the thing peeking out).
The surgeon was opening me up either way, so my options at this point were:
- Remove the expander and deal with the extra reconstruction issues that come with it (possible lat flap reconstruction on both sides rather than just the one side).
- Try to reopen the incision and remove the all of the scar tissue to create a new line, add a new drain tube to try to keep out infection and allow the wound to heal as properly as it can with me in chemo.
The last thing I have wanted in this entire process is to have them remove my expander, I like being even, I like feeling as normal as I can and the horrors of an even worse reconstructive surgery keep me up at night. When the surgeon posed trying to reseal the incision line (after it has opened up 3 times now), I jumped at it. It obviously is not going to fix itself through more stitches and more waiting. I still have 3 more months of chemo ahead of me, and the surgical issues have been much more stressful than the chemo itself. I want to actually heal and be able to take a bath or relax on the boat this summer and at the current rate of healing none of this is going to happen.
This time I waited to put on my fancy blue surgical hat for a little bit.
Dr. Agarwal wanted to do the surgery today. Mike had to get a ride up to the hospital because I drove myself. We went over and got checked in at the U of U hospital where they expected to have an operating room available. I had a day full of meetings that I had to cancel, but I got them hopefully all moved around. No one has told me what the recovery is going to look like on this one. I am sure I need to be extra careful as this is my last chance to heal up or they really will take out the expander (yet another surgery, yay!).
I am now home from surgery and a bit more sore than I anticipated (last time I had 2 nights in the hospital after). Dr. Agarwal said I had a lot of fluid built up, but luckily nothing looked infected. He had to drain my expander a bit to give me more healing room with less pressure on the incision, so I look a little funkier. I also get to walk around with another dreaded surgical drain for the next week or two, but this one isn’t going until I am drained and healed, period. I am glad that I was offered an alternative to having the expander removed today though! Now I am back on bed rest (again), but hopefully with results this time!
Charm for the end of the "red devil" Adriamycin.
Not sure why, but this whole charm thing has taken a hold of me since I started chemo. Maybe it just gives me something to shop around for online when I am too tired to read or be too exciting (although exercise and diet really ave seemed to help a lot in managing fatigue). I am starting to try to pick out charms to add to my bracelet for milestones in my cancer treatment. I ordered devil charm for my next treatment which is the end of my AC cycle (no more red devil! – or red death as my mom likes to call it). I may keep looking around for a different one, this guy turned out a little larger than I hoped.
Still trying to pick out an “end of chemo” charm. I don’t want my charms to be all skull and crossbones types of things (need to pick something for radiation). So maybe I will get a hat or something cutesy related to experiences of being in chemo (I could get a food charm for my obsession with food on my steroid days). We will see.
I don’t have much exciting to report. It has been a good weekend filled with naps and resting. Overall feeling great, just a teensy bit more tired than normal. My incision issues are what they are, they don’t seem much better or worse and with the tiny window that I actually heal during I will probably be battling keeping an infection out for the rest of chemo. Hopefully after that we can get my healed up before I start radiation. The opening isn’t all that big, but it does go all of the way through. I am just hoping that antibiotics will stave off an infection while I get through chemo. Along with trying to limit my activity, which is hard because I really want to cook and clean all of the time, seriously, holding back is hard and I forget to do it frequently. Several friends have been helping feed us now and then, which has definitely helped. Love you all!
My mom with her Kindle playing the role of "chemo buddy" for the day.
I got to sleep in a teensy bit before my appointment today. My breast that has the issues with the incision had some funny red marks on it and a purple spot where the gauze must have dug into my skin – so it was looking a little funky this morning which got me pretty stressed out, not that I haven’t already been stressed out this week as it is. The red marks were definitely from the tape yesterday (I was changing my gauze every 15-30 minutes). Once the doctors looked at me I knew I was fine, but I am starting to develop some strange paranoia about my incision, every time it changes in any way not good I freak out. I am still hoping we caught this before it is a real infection, but I am really not ok with what happens if it is.
Yesterday I walked on the treadmill, wound or not I try to keep up my regular exercise, as I had missed two days because I was worrying about an infection. After my 30 minute walk I discovered that my gauze was soaked. A large amount if clear (non-infectiony) fluid was making its way out of my incision. The could be freaky I guess, but I was kind of happy, because it meant that the build up the doctor had been feeling around for was making its way out (and the fact that the fluid was still clear).
I tried to rest and hydrate all day so that my veins would be well behaved for their premier event today. Unfortunately they weren’t in the mood to participate, so we had to use a main vein for chemo today (the one in the crook of your elbow). The nurse thought I should be able to use that one for the next 5, we will see, hitting up that vein so soon isn’t a great sign. We think my veins were hiding because all of my stress this week. Someday when my incision heals I really do plan on taking up Yoga or something a little more exciting than walking fast on a treadmill.
After seeing my doctor my mom and I ran up to the cafe and got a salad and smoothie to eat. I have discovered I tend to be famished when I get home and a lot of chemo patients eat in the infusion room, so I figured I would try that out today. My salad was delicious and the smoothie superb. I even recommended it to a neighboring patient.
Showing off my drugs.
Chocolate covered cashews.
They put me in a different infusion room from the main one, I hadn’t seen this one before. The smaller room had a nice view of the snow falling outside. It also made it a bit easier to be chatty with the nurses and other patients (I was in a chatty mood today, maybe that will be my stress relief for the week).
The nurse was pointing out my next IV bag to the other nurse before she left the room and mentioned that Mandi gets that next. I looked over at them and said “Mandi gets that and candy?” The nurse later brought me some chocolate covered cashews, so I did get my candy! I decided that it is because I am super sweet. The nurse then had issues getting my notes in the computer, I asked her if the note was about me being the best patient EVER, she neither confirmed nor denied my statement. So, I am pretty sure that is exactly what she wrote down (yes, I think I am pretty darn special today).
There was a new patient there today getting her chemo for the first time. I tried to tell her about my experience with chemo so far and gave her my email address. Hopefully I helped a little bit. It really does help to have a support group of people who have experienced the same things you are experiencing in this type of circumstance.
3 down 5 to go!
The breast cancer adventure continues this week. Yesterday I had a pretty bad headache all day and realized that I should check my temperature when I got home from work. I came in at 99.6. I definitely had a fever, but a low grade one which could be caused by just about anything. Paired with that was the fact that the area around my stitches had graduated from happy normal skin to red and mad skin.
The fever stuck around until mid morning today. After about 10:00 AM I was back to a normal temperature, but the area around the stitches started leaking clear fluid out of the main incision (story of my life with this thing). My white blood cell count isn’t quite back to normal yet so what really is going on is a bit up in the air.
I have an appointment to see the plastic surgeon tomorrow morning, hopefully we are catching issues before they are a real issue (I am the worst case scenario patient to him it seems). My fingers are crossed that I am worrying too much and that this isn’t an infection.
Some super awesome ladies from work wanted to do something to help raise money for breast cancer research after they found out about me having cancer. They set up a team for the Komen Race for the Cure, my fundraiser page is here. The Elemonators team page is here. If you would like to run, please feel free to sign up! The girls have a great idea to get some pink camo shirts with a lemon patch on the sleeve. They are still working out the details on teamwear, but it should be pretty awesome!
I will be there supporting the team, the race is the day after my chemo infusion, so I may not be able to walk or run the race, but I will be on the sidelines cheering in my pink camo! Please feel free to offer a tax deductible contribution or sign up to join us!
Update 3/23/11: The doctor confirmed that it looks like I am going down the road of getting an infection. I now am back on antibiotics and antibiotic ointment. I have to go in weekly now for checkups, if it gets any worse I will be forced to have the expander removed for the rest of my chemo treatment.
Mike and I at my MBA graduation
Major life events such as being stuck as the caretaker for your sicko wife can tend to put quite a strain on a marriage (on top of being forced to quit smoking while you watch your wife go through rounds of tests and getting bad news on top of more bad news). The first month of all of this put both of us on an intense emotional roller coaster that made you scream each time you got to the top (not the fun kind of scream). Throw in having to worry about how to manage the financial adventures of figuring out medical bills and remodeling a bathroom so that your sicko wife has her own personal haven could be a bit too much, but it wasn’t.
Breast cancer takes away a lot of things that women in society are taught make them beautiful. Your breasts will never quite be the same, whether you have a lump removed or have the entire breast removed. You feel violated, yes, reconstruction is way better than it used to be, but it doesn’t replace what they take away. Don’t get me wrong, I am happy with my breast expanders (albeit they make it so I can’t sleep on my side) and my surgical choice, but that doesn’t make up for the fact that I had to make the decision itself.
Chemo for breast cancer takes away your hair. So much money is spent on haircare and everything under the sun to make you have amazing hair that will get you noticed, which means the lack of hair may also get you noticed, but not in the way that you prefer. Of course I could have beautiful hair everyday if I chose to wear my wig, but hats get uncomfortable after awhile, a wig lasts about 2 hours max on my head.
Big kisses in Key West at the Southernmost Point of the US
My husband makes me feel just as beautiful to him as the day I found out I had cancer. I can’t tell you how much that means to me. When I get home I take off the hat and sit around in a tank top with a bald head because it makes me the most comfortable when I am exhausted, and Mike makes me feel just as loved and just as lovely.
Mike has taken over pretty much every household chore without much complaint. The healing issues with my surgery still leave me pretty much unable to cook, vacuum, scrub, reach high places, go grocery shopping, take out the garbage and everything else you need to do to keep up a household. Until I am 100% healed he will still be cooking and cleaning and taking care of me, along with working everyday. It certainly cuts into his fun time, but he has done everything he can to make me not feel like a burden.
Several people remark how I am smiling all of the time and seem genuinely happy. This is because I am happy, I have no reason to let this get me down, and Mike is the number one reason why.
PS. Chemo side effects are mostly gone as of yesterday, so it means I have a week of feeling pretty much normal! Yay!
Day after my mastectomy, my coffee and smoothie for breakfast (and Mike's drink of choice in the background).
For anyone that knows me well, I am a bit of a coffee fanatic. It was my business to keep coffee shops in business my teenage and college years. I love the stuff, I dream about it, I even bought a fancy Keurig coffee maker for my office at work so that I could have the good coffee happiness at my fingertips at all times (which now lives at my house and super awesome Joan bought a replacement to keep in the office so that I could be properly caffeinated at all locations). Chemo ruined coffee.
My week has been a process of learning what tastes good and what doesn’t taste good. My tastebuds were mildly impacted last round of chemo, but this round definitely kicked the “funny taste” into high gear. The best way I can describe how it makes certain things taste is that regular water tastes like swamp. I have heard it described as metallic taste, but for me, pure unadulterated swamp.
Coffee had already started to taste funny, but yesterday I found myself unable to finish a single mug of the stuff. It wasn’t really a conscious avoidance, I really took notice at the end of the day when I had half a mug left and the realization that I had never refilled. It just wasn’t drinkable.
My coffeemaker right after I got it for work.
The medications they have me on leave me hungry most of the time (good thing I am walking on the treadmill 30 minutes every morning – yes, lots of people gain a lot of weight while on chemo). I even woke up with a gurgling hungry belly in the middle of the night a couple of days ago. I have found that snacking on something every 3 hours or so curbs the appetite and teensy teensy bit of nausea that I did feel the first few days after chemotherapy. They really do have the nausea stuff under control as they promised, the side effect that I notice the most is just being tired and fuzzy headed (chemo brain, of course I got it). I forget things in the middle of a sentence and I have to write things down. It doesn’t actually impact my IQ, but thinking about more basic things takes a bit more energy than I am accustomed to.
Certain things taste just as delicious as they used to. I find Mexican and Italian foods taste great to me. Certain sweet things taste absolutely horrid, so far the worst two were grapes and key lime pie. It really is a bit of a gamble as so far there really doesn’t seem to be much rhyme or reason to what things don’t taste good.
Now if cheese starts tasting bad we are in real trouble (my other fave on the food charts).
March 19, 2011 added note: Coffee started tasting good again! I figured I would try it because water seemed a little less swampy. It seems like my tastebuds may only be swampy temporarily, not the whole time. Yay!
The hair coming out didn’t quite happen as slowly as I thought it would. It had started Thursday, but my Saturday huge chunks of hair came out all at once. This morning I had to empty the drain 3 times to finish showering (with my short hair even!).
It was time. Mike went skiing for the day (he was feeling a bit better from his cold and definitely had some ski passes to use up before the ski season ends). By the time he got home I was ready though, I have been wearing hats to try to keep the hair dispersion down, but wow, it really was coming out. The time came, but I kept up my promise:
Sporting a mohawk.
My mom gave my lucky pearls for my breast cancer treatments. I decided that I wanted a lucky custom bracelet also.I pulled out my old jewelry making supplies that have sat neglected for many years. I wanted something to fiddle with other than the computer in my tired to energy to tired rollercoaster I am riding today. The medications have done fairly well so far in managing the nausea, I went in for my Nuelasta shot this morning (my blood counts were really good Friday, yay Nuelasta!). Last night was a bit of a tailspin, I didn’t feel great, but I have certainly felt worse in life.
Tracking down lemon charms that I liked was a bit harder than I anticipated, but I was excited when I found ones I really liked (I pondered lemonade charms, but those were even harder to find in such a way that I liked. The theme of my bracelet is Hope > Optimism (lemons – making the best of a bad situation) >Love. I haven’t decided what to do with the extras that I can make, give them away, put them on Etsy, give some to the Rat Pack Foundation.
Hope, Making the Best of a Bad Situation, Love. Charm bracelet I made.
Wearring my hope bracelet.
For now I just made a bracelet for me and some wine charms. I may make some earrings also. I am open to suggestions to what you think I should do with them. I only bought a few bracelets (these things can be pricey even though I consider these costume jewelry (some silver some pewter).
Love and Hope wine charms I made.
So far getting the stuff to do the has given me something to occupy myself. What brain power I have these days I try to save up for going to work. This is essentially the excitement of my weekend so far.
Something about going to chemo makes me nervous. I am not sure if it is the worry about how I will feel for the next few days or the fact that my hair is gone for certain very soon. I don’t sleep well the night before I go in, but I am really not sure what I am worrying about. The experience of being in the infusion room isn’t too bad, the nurses are the friendliest bunch ever, most of the patients sleep, and I just sit on my laptop doing whatever (my last 4 will probably involve sleeping because they give you Benadryl or something like it in an IV, one pill of Benadryl knocks me out completely, I can’t imagine a whole IV…).
My morning started out heading up to Huntsman with my dad. This was his first real visit with me to the Huntsman to see doctors and get treated (other than sitting and waiting through my surgery and post surgery visits). We got in a bit early (we never quite know how long it will take to drive there, some days it takes 10 minutes other days 45 minutes). They took me in to the lab so that I could get my IV placed and my blood drawn. I got the usual “get a port lecture,” I guess what gets me out of it for now is because my infusion is over 4 months. If I had to take Herceptin or the year of infusions, I wouldn’t get to attempt to choose.
Chanteel, me and Dr. Buys. I <3 them.
My Nurse Practitioner Chanteel was super awesome as always. We moved a couple of prescriptions around, but with no overall really bad side effects last time we pretty much stuck to the same fistful of pills for breakfast and dinner. Dr. Sandra Buys my oncologist came in and checked on me and had fun sneaking a few hairs out of my head to see how fast they were coming out (the last two days have definitely been hair shed days, but still no clumps). They told me that when the hair follicle tries to grow is when it falls out when you are in chemo (you learn something new everyday). So you lose it at the rate that your hair tries to grow. We will shave it once it is obviously clumping up (and this will include a mowhawk before the final cut).
My lab report showed really good counts in all areas, which of course means I got the greenlight to get chemotherapy for my breast cancer. After my appointments we dropped off my prescriptions at the pharmacy and headed on down to the infusion room. Once you get there they give you a hospital bracelet and turn in your order to the pharmacy to mix up your cocktail.
Dad read the newspaper while he waited. News, on paper? Who came up with that idea?
After you are done waiting for them to get your order ready they move you into the infusion room. This time I was placed in a chair that didn’t have the nice view out of the window, but that was ok. I realized later that my chair is assigned on my medical bracelet (may help in making sure the right people get the right stuff – even though they have you verify your name on each item before they give it to you). I had a different nurse today for the adriamycin (red devil).
Another super nice "drug pushing" nurse.
Today they used a vein in my hand for my infusion (how that decides to react may seal the deal on this whole port thing, although I am still on strike about it). After the initial bags of anti-nausea medications they moved on to the Adriamycin. I watched a bit more closely on how they administered it. They tap into the saline line close to my hand and mix the saline with the Adriamycin and the carefully administer each syringe over 5 minutes and then they switch to the next.
Getting more red jello in my veins with what appears to be a very hairy arm.
After the Adriamycin they gave my the Cytoxan in another bag. The Cytoxan is administered over an hour. After that is done the flush my vein for a half hour with saline solution, and BAM! Chemo is done. I feel pretty tired about halfway through the Cytoxan infusion. The feeling right after this time and last time is the fuzzy feeling you get when you are coming down with the flu.
I am home, a bit sleepy, but made it! 2 down, 6 to go!
Mike and I got up super early to head up to the Huntsman Cancer Institute to get me closed up before the day’s appointments began. We were up there before 7 AM. Once we got placed in the procedure room the lights went out everywhere. My initial reaction was that it was just my luck that they wouldn’t be able to do it (after 4 days of stressing and worrying and waiting). Vicki the surgical nurse came in and discovered that the bright operation lights were working, so the show could go on!
Dr. Agarwal took off the temporary stitches, and I could see the icky ouchie again. I had been using Silvadene antibiotic creme on it twice a day to try to keep bacteria out along with taking the Augmentin antibiotics twice a day (aka horse pills). Dr. Agarwal wanted to try to get my bacteria count down before he went ahead and sewed me up (infection is the biggest fear that surgeons seem to deal with as a complication post surgery). This is compounded by the fact that I am currently at the nadir of my chemo cycle (I am at my lowest white blood cell count and most likely to get an infection). The interesting thing about infection on chemo is that you basically have to take your temperature regularly because you may or may not show signs like you normally would.
He stitched me up beyond the hole itself with bright blue stitches. Mike was crazy enough to stay in the room and watch, but a pro plastic surgeon stitching is probably interesting to watch. I turned away, I try not to watch procedures that involve bleeding too closely. I was surprised to find that I had a few working nerves in there when they applied the local anesthetic. It makes me wonder if there is a small chance that I will get more feeling back in the coming years. I won’t get my hopes up to high there.
The good news is that now I am off of the Silvadene cream, I am allergic to it, and had spent the last two days taking Benadryl for my rash which sort of knocks me out. I need to be gentle to my stitches and hope against hope that the things will seal up properly, I know that Dr. Agarwal can fix the scar issues when I go in for reconstruction when all of this is over. The focus right now is just to get me through chemo over the next 4 months. It seems so far away! If I stay on track my final treatment will be on June 3, 2011.
I am now having to start to consider having a port installed already. The first vein that we used for my last chemo treatment collapsed Saturday night (somewhat painfully). I am going to talk to my oncologist, I really really don’t want a port, but if I lose a vein for 8 out of 8 chemo treatments my right arm might get pretty darn sore. If I have a good chance making it I will probably keep it up using veins (I have a list of reasons why, I know my options, but I just don’t want a port).
My dad is driving up from Price to take me to my chemo appointment on the 11th. This chemo treatment should be the final hair killer.
I have been loving my brand new relaxing/spa bathroom! Before and After:
Bathroom before and after.