May 2016 Surgeries

Well I never cared for either Disneyland or Six Flags. I've been saying for months now that this is me being forced to choose between multiple horrifying choices for the horrible one I can hopefully live the longest with, and that I don't like this game because the stakes are too high.

And then they ruined my arm/hand on top of everything else.

Nothing nice to say today.

Tried to push up off the floor yesterday - trying to get up from being down there - absolutely zero upper body strength now. I used to be able to do multiple push-ups and such with no problem. Cut the bottom of the pecs free and it's as bad as I feared - no strength left at all. I hate this.

Hi my fellow May ladies!

I was diagnosed Invasive Ductile Carcinoma/Insitu, Estrogen Receptor Positive in January. Started Zoladex and Anastrozole the 14th of March. 2 week biopsy after starting therapy I was told a Ki-67 score of less than 10 is good and mine was under 2! My surgeon and Oncologist were thrilled and said if I continued to respond so well I wouldn't need chemo. Still in disbelief how blessed I am to be escaping chemo. Watched my mother go through chemo and radiation 27 years ago and it was rough but she's on my journey with me and will turn 80 at the end of July. I also watched my father go through chemo for myelodysplastic syndrome when we were told it was not treatable at his age and I still don't know why he went through it with no hope of it helping He's with me on my journey from above with his brother who died of Lymphoma. I'll plow through chemo if I must but, not going to lie, I will thank my lucky stars for each day I avoid it!

I signed on to do the Mammaglobin-A Phase B Vaccine Study at Washington University ( the full story- https://source.wustl.edu/2014/12/breast-cancer-vac... ) and am the only one, so far, who qualified for the study and made it through all three rounds of injections (2 each month). It was NOT fun as the injection is accompanied by a jolt of electricity I liken to being touched with a cattle prod or electric fence. Dr. Gillanders is awesome and explained that the jolt of electricity is needed to open the cells to accept the vaccine. Seriously, it wasn't that bad. As with everything else on this journey my approach is to have a "This too will pass" mentality. If what I did for the study helps save the lives on any women who come after me then my momentary discomfort was well worth it! I had no side adverse side effects other than some soreness and bruising which lessened each month (no bruising at all the third round and I have skinny arms!) My awesome infusion lab nurses and I laughed the whole way through and joked about my being the number 1 guinea pic. Laughing through it together made it not so bad! We were bound and determined to discuss the whole process to make it easier for the next patients in the study. After my very last injection they presented me with a rainbow My Little Pony with a congratulations balloon tied to it. I make a living braiding show horses manes for horse shows so obviously I'm off work until at least September. The nurses said I could keep my braiding fingers in shape by braiding my rainbow pony's mane. LOVE those gals! Huge piece of advice- make friends with all of your nurses! Those nurses have seen triumph and tragedy over and over and it will brighten both of your days to see a friendly, smiling face!

I just underwent a bilateral mastectomy with sentinal lymph node biopsy and expanders on May 31st at 12:30 pm. I was nervous about the pain but once again, head up, be strong, plow through, this is just a blip in my timeline, THIS TOO SHALL PASS!

I was have never had a problem with anesthesia but threw up every time I got up to go to the bathroom after surgery. I do get sick from pain meds on an empty stomach so I tried to eat some jello (red, bad choice!) but it came up too. My wonderful night nurse came up with the perfect combo of meds (anti-nausea, then pain, then muscle relaxer) that got me off the puking merry go round. She called it her "#3 Combo like at the drive through" but much more satisfying! The next morning I ate a whole wheat English muffin (butter and strawberry jam), a small bowl of crisped rice cereal, and some fruit. First meal in 34 hours and it stayed down (thank God and LaWanda!) Slept most of the day and didn't feel very well overall. By 1 pm they decided that my left drain wasn't working properly and by 4 they were wheeling me back into the OR to fix it. This time I asked for the anti nausea patch they didn't give me the day before. ASK FOR THE PATCH! Post 1st surgery everyone kept asking where my patch was and why I didn't have one. Hell if I know?! Ask for the patch and the regional nerve block- totally worth it in my case. I ordered and scarfed down a grilled cheese, fries, apple juice, and another fruit bowl half an hour after I got back to my room again and had no nausea. Plastic surgeon said he was really happy he went back in because I had a bunch of clots including the one that was clogging my drain. I felt great afterwards and everyone on my care team then admitted they had thought I looked grey, half dead, or from my mother "looked like crap" all day before the 2nd surgery.

So after 2 night in the hospital and 2 surgeries I went home to my mom's house. First challenge- keeping a 12 year old, 7 year old, and newly acquired 2 year old Australian Shepherd from hurting me in their excitement over Mama being home. Had to use some wicked blocking skills and a baby gate but I made it into bed unscathed. Of course the 2 year old followed me into bed enthusiastically and I still have to be careful with that (I didn't start the dog in the bed thing, he came that way!)

Now it's my 4th night home post surgery and here are my thoughts in no particular order-

-I took the advice from others on this site and ordered a zip front compression bra with adjustable shoulders- good idea. I didn't trust the reviewers on Amazon who said it ran really small, dismissed that as compression, ordered a medium and can't wear it because it is WAY too tight- bad idea! My swelling is down enough that the one they sent me home in isn't snug at all after barely being able to fasten it in the hospital. My old favorite bralette/sports bra is the most comfortable choice. It provides enough support and is the only one that doesn't cut into my still puffy underarm area.

-My foam wedge and several pillows are a gift from God. Get a wedge before you need a wedge- this one has been in my life for several years and has never let me down. I'm a side/fetal position sleeper and wouldn't be able to sleep without the wedge.

- If you don't already have Amazon Prime GET IT! Free 2 day shipping on stuff you forgot you needed, basic household stuff (Amazon Pantry), and a great selection of post-breast op necessities. Also a great source of reading and video material you will appreciate while you are laid up. I can't stand being idle so it's imperative to keeping me from getting up and trying to do stupid stuff I shouldn't.

- bSoft sleep and lounge wear! Also on Amazon. I sleep in tank tops or t shirts so I took the advice from here and ordered 2 button front, short sleeve nightshirts. BEST PURCHASE EVER! They fit great, feel amazing, cover enough to be decent for visits from friends and family, easy on and off, and NO issues with waking up sweaty from hot flashes!!! I've lived in them since I got home and won't sleep in anything else from now on. They are super cute too and have lots of different styles. I bought this one- http://smile.amazon.com/bSoft-Womens-Sleeve-Bamboo...=lp_9239300011_1_6?srs=9239300011&ie=UTF8&qid=1465184118&sr=8-6

and this one http://smile.amazon.com/bSoft-Womens-Sleeve-Bamboo...=lp_9239300011_1_6?srs=9239300011&ie=UTF8&qid=1465184118&sr=8-6

-Again- listen to the advice from other members- TAKE YOUR PAIN MEDS even if you don't feel you need them BUT don't let the pain meds fool you into thinking you can be more active! We have earned the right to our pain meds but do not let them fool you or you will pay for it later!

-Badger your doctors and care team if you don't feel like you have gotten your questions answered to your satisfaction! They have been through thousands of surgeries and sometimes forget that this is your first and hopefully last! There is nothing worse than spending the weekend scared because you weren't given clear (to you) answers and explanations about what to expect post op. You may or may not be able to get ahold of someone from the surgeons office over the weekend to calm your concerns.

-Use this forum as one of your best tools to educate yourself BUT don't obsess or talk yourself into believing that the worst will happen to you because you read another members bad story. Yes, bad things do happen to good people but when it comes down to it you'll only stress yourself out if you expect the worst. Walk with your head high, a smile on your face, and a positive attitude in your head and heart! Slay each dragon as you come to it and keep your eyes on the prize at the end of your journey- my prize is in the form of 2 nice, new, perky boobies on my young 47 year old body!

Pardon any typos but it's 11 pm and I haven't had a nap all day. Oh, yeah, TAKE NAPS you've earned them and your body and brain need them!

So blessed to have a forum of awesome chicks to chat with! You go girls!

- StonyPony

Papillon - aw thanks. Yesterday I was just crabby and tired and all worn out.

The geneticists I've talked to says there are more genes linked to cancer in families with utterly consumed histories like mine and others here have; that there has to be, but they just don't have enough evidence yet or haven't found the precise gene yet. I imagine we'll learn a lot in the next 20-40 years, and more people will be able to "know their future" and face the burden of making decisions like some of us have had to make. And for some of us with generations riddled and destroyed by cancers that don't fit a current known pattern, there will finally be answers.

I hope your children and their children have better options than we do now.

Today is 4 weeks post-op. Tomorrow is fill #2. The nurse last time suggested trying to increase the amount by small increments, like 5ccs, to see how bad it was without muscle relaxers to stop spasms. See how much I could tolerate, basically. But then both she and the PS told me the pain and discomfort are going to get worse with more fills. So I don't see how bigger could be better except for hurrying the process along and getting to the next surgery faster. At the same time the TE look so ridiculous I can see why people race through their fills trying to get back to a more natural shape.

I do wish I could stop the nerve pain from my arm and the hypersensitivity on my chest skin. That bothers me way more than the TE digging in to my ribs. It's like ZAP cloth brushed my chest! ZAP hair brushed my chest! ZAP the edge of the sheet is touching me! And my arm is yelling constantly that it is in pain, and is so weak.

Anyone got any non-drug ideas for reducing the chest skin hypersensitivity? Obviously I've got the sports bra 24/7 thing going on until the next surgery, per my PS's instructions, but the skin area is larger than that.

Greykat, after my first fill my PS prescribed me a topical ointment, I think lidocaine? Would that help? I have also seen sunburn spray that has something in it to help with pain, but I don't know if that is the type of pain you have

I guess our nerves are all in shock!?

Appointment with plastic surgeon a great success. He is very happy with my healing. He can increase size in around 9 months with using my own fat (he wants hip, I prefer belly.. To be discussed!!!). I made a particular thing of thanking him and my BS for potentially saving my children from going through what I went through with my mum and what he himself went through with his dad. He was touched. I think I love him a little bit. Lol.

Have a cream - silicone gel - I can put on my scars in about 10 days to help them fade

I just got back from my first post op appointment with my PS. My two remaining drains were pulled and the wound vac taken off! Now I'm in a compression bra for 6 weeks. I was very pleasantly surprised at how good my breasts looked. My BMX was nipple sparing and I was very worried about that, but the dr said they looked great. I was liked with a little air during surgery, so next week they'll replace the air with saline.

thanks specialk - my whole chest skin is so sore. Will moisturize

Raven4mi Thanks for the tip about the jewelry bags! I'll send my mom out to get me some tomorrow! So unbelievably annoying having them stick to my already uncomfortable skin.

GreyKat - wow, that's incredible that they stapled the surgical drape to you! No wonder you were in such pain! I got a copy of the operative notes from my PS - it should be part of your medical history as well and you can request a copy from the hospital. My report says that the Allodern was sutured to the inframammory fold and the inferior pectoralis muscle, with the TE placed inside. No mention of staples. I thought the TE was also sutured in place but not according to the notes.

LRGO- thanks for the link. I have been following the thread about Color Genomics:

https://community.breastcancer.org/forum/71/topics/830635?page=6#top

My insurance denied coverage of BRCA testing because I did not know of any history of BC in my family (my dad is from a long line of Christian scientists, so who knows what kinds of ailments lurk in my family tree? If anyone had BC they would not have been treated for it.) Anyway, Color Genomics will sequence a bunch of genes (19, I think) that are implicated in breast and ovarian cancers, including BRCA, for $249. No doctor required, you can order the test through the mail, and they will recover your DNA from your saliva (so no blood required either). It was very easy and they send you email notices every step of the way to let you know how the analysis is proceeding. I got my results back in about 2 weeks. There was a variant of unknown significance (VUS) in one of the cancer genes, but it's such a rare mutation that they really don't know if it has any effect.

Hope you are all well. StonyPony, hang in there! For both of my surgeries, the second week was a little worse than the first, because that's when the underarm sensitivity creeps up, but it gets better everyday after that. I'm at 2 and a half weeks and feeling pretty good. I go back to work half-time tomorrow and will try full time next week.

Edited to post link)

Oh my goodness greykat! They stapled the surgical drapes?! That's just wrong.

Midwest - the reason they give you the card is that you have an implanted medical device that is unique - it has a model and serial number and is traceable - should there be a recall or a need to contact you regarding it, just like a knee replacement or heart valve. This is true also for the implants you will eventually receive, they are warrantied by the manufacturer for a period of time which varies with each, so if there is a defect or problem they know when, and in whom, they were placed.

For the most part expanders are sewn into place with suture tabs - like flaps, I have not heard of them being stapled. Not all surgeons use the tabs, some just place the expander and the allograft material and pectoral muscle holds the expander in place until exchange.

My genetic counselor did say that the genes they know of only account for 50% of all genetic cancers. I am also negative, but multigenerational breast and ovarian on both sides of my family. Seeing a genetic counselor is supposed to be an ongoing thing since they are still learning more. I don't know if insurance sees it that way, but Dr. Ross, who wrote the book Cancer in the Family speaks of it as a journey. Being negative is still meaningful. It doesn't mean there isn't a genetic component. It just meansthey don't know yet.

Valstim52, so glad that things are going well for you post-op!

GreyKat, I can completely understand your frustration (which I think might be too light a word for what you're going through.) It's so maddening when the medical community insists on treating us like statistics.

I had my follow-up appointment with the infectious disease specialist today. Things appear to be clearing up; unfortunately we won't know for sure except based on "clinical analysis" which he recognized was unsatisfactory but obviously they don't want to open me up again unnecessarily just to do another culture. As long as I continue to have no fever and the redness keeps abating then all is considered good. He did extend my course of antibiotics by another 7 days but then I don't have to go back to see him again for another month. The TE replacement still needs to wait the full three months however. And, as if I didn't have enough going on, I appear to have a yeast infection around the incision under my right breast. Awesome. I'm now applying Lamisil cream on that. The fun just keeps on a-comin'.

While there, I asked him about what kind of reporting/investigation is going on. He misunderstood me in that he thought I was inquiring if this was being reported on the national level (it's not - not common enough), but when I told him that my primary concern was the internal hospital investigation he called the ID office at the hospital right in front of me and confirmed that they're aware of the infection, they know my name, and they have initiated an investigation. So I was happy to hear that, and I'm sure my PS will keep me informed on what's going on with that as well. And I seem to be 2 for 2 on my specialists so far - I hit the jackpot in the PS department and I also really like this ID doctor. Very attentive.

Greykat, that stapling thing is absolutely ridiculous! What kind of hospital is this?

And I get completely what you mean about symmetry. I've asked both the BS and his assistant to make nice scars, since I don't get recon. I didn't say anything about symmetrical scars, I assumed it was a given. Well, we all agreed today at the appointment that there were definitely not symmetrical. But the BS was happy that the stitches didn't open cause he wasn't supposed to use those on radiated skin. (He used those because they give the best scars).

Grandma3x, you're right. For the time being, I take deep breaths and try to meditate. It doesn't make the scars symmetrical, at least it helps me sleep at night.