Category: brca bullshit

brca bullshit

Six Week “Boobie” Versary

SisyphusRealized3 Comments

Pain is all there is. I go to work like a zombie and just pray I can make it home … at which point I don’t eat and I just lay in bed and hug my brookstone nap pillow (to which I was going to link but apparently they don’t make them anymore?) I’m really glad I have my Mom’s larger one and the smaller one that my “family away from family” bought for me… I’d be sad to hear they discontinued the line, because they bring so much comfort and conformity.

Week 3 on the Butrans patch and I am miserable. I’m taking Vicodin on top of it, have constant muscle spasms and still have not been able to get approval from insurance for PT. In general, I’m feeling tired and weak and work is getting harder and harder to drag myself to…but since I have no leave, I have no choice.

Now if I could just rev up my hormones enough to keep J happy once and a while… How do you ladies handle sex when you’re so tired and sore?

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brca bullshit

Five Week “Boobie”versary

SisyphusRealized14 Comments

I can’t believe it’s been five weeks already.

More importantly, I can’t believe I still feel this awful after 5 weeks.

I know everyone was hoping I’d be feeling better, but apparently most people were expecting that I would be feeling better by now…and thus, they are frustrated with me, and I am frustrated with myself and around and around it goes.

I started week 2 of the Butrans pain patch last night after spending most of day 7 with the week 1 patch in complete agony. My back was on fire an both breasts felt heavy and sore and, well, damaged…it was like week 2 and 3 all over again! I put the new patch on (and promptly was covered in a rash all over the arm where patch 1 was…) and took Vicodin and Valium and went to bed.

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I’m supposed to smile and pretend that I’m recovering and moving on with my life and that things are getting better, but really, I’m in constant pain, and my brain feels like Swiss Cheese. I can’t blame chemo…I can’t blame old age…but my memory is just…gone. Slowly I’m accomplishing tasks and checking off items on my list, but it’s taking forever-way too long, and thus, the frustration.

Also, as a side note,…who the fuck can get themselves and their necessary items to work and back without carrying more than 5lbs?! My CATS weigh more than 5lbs! I really have tried, but that is not a realistic expectation for patients who have to go back to work. Especially if that patient works in IT.

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Bright Side:
My pain management doctor (Dr Ch) responds to emails on Saturdays and is constantly on top of things, offering suggestions to lessen the pain, unlike any of the doctors who were involved in the actual surgery. I would recommend him to anyone…when I see his emails checking in with me, I instantly feel heard and not ignored. Other than him, I’m done with all doctors associated with this surgery…although I’m not looking forward to finding new ones.

AND, my poor wonderful boyfriend (and wonderful parents!) continues to be supportive, and I believe with all my heart that he is the man I want to marry and spend the rest of my life with — even a few days apart from him make me so sad, and after that initial 3-month “honeymoon” period (which was so rushed because of the surgery, the poor man), he’s settled into a less physical and more loving, supporting role. I’m so grateful that a) he came back into my life b) he wasn’t scared away by the intense pace of all the crazy pre-surgery nonsense (family meet-and-greets, etc.) and c) that he is a “doer” – he just can’t sit and be lazy like I do, so he encourages me to be a tiny bit more productive and a tiny bit less “I’ll get to it tomorrow”. I’m sorry for the mush, but he’s just so amazingly wonderful that he balances out my complete and utter miserableness regarding the pain and the lack of energy.

[EDIT: I won my court case against my former employer for *ahem* a lot of money]

brca bullshit

Four Week “Boobie”versary

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I’m a day late, but I’m not sure how I feel this week. I went back to work on Thursday of last week and immediately knew that was a mistake. I’m tired, I’m moving slowly, and I sure as hell can’t remember a damn thing anyone says to me… and driving fucking sucks. But, since I was so negative last week, here are some good things:

1) I met a new neighbor who very graciously carried my garbage cans for me last week because they are way too heavy for me to pull.

2) I’ve created a very effective system of taking my robe down with me, stripping in the laundry room and putting my clothes in the washer every day, so that I don’t have to carry a laundry basket… then, when J comes on Friday, all he will have to do is carry the basket up for me! 🙂

3) Even though I didn’t want to go see him, Dr. Ch, my pain management specialist, is awesome. He asked me to relay my story, and when we got to the plastic surgery visit, he blurted out “so, basically, he was an asshole?” and I laughed, agreed, and we continued with the consult. Except it wasn’t a consult… it was a full exam. He agrees that I likely have a pinched nerve as well as a considerable amount of nerve pain around my “divot” in my chest because that sunken spot has forced the nerves together and they are trying to connect harder than they were. He gave me a pain patch and it’s already starting to work – it will reach it’s full efficacy on Friday, so expect a full report then!

4) My BS finally saw me – she couldn’t get the stitch out either, but explained it was because of risk of infection and put a steri strip over it so it would stop catching on everything. Genius. She also (not-so-gently) shoved my implant back where it was supposed to be and said “the space is there, it just needs to be sewn in a different way”. When she did that, I could see how it would look exactly like the other one, and all the loose skin and wrinkles will go away. That made me feel immensely better (even though I did NOT want to have two surgeries), and hopefully it will be quick (both the surgery and the recovery) this time. She likened it to an exchange surgery, so I’m assuming those of you who have gone from expanders to implant can enlighten me more as to the pain and healing time.

5) I have an amazing family and an amazing boyfriend.

6) I have amazing friends.

7) My hand hurts at how many “thank-you” notes I’ve written … everyone was so good to me!

8) The worst is over. [EDIT: Jinxed myself there, didn’t I?!)

I didn’t take pictures yesterday because it was such a long day (I didn’t even get HOME until 9pm), but I’ll take and post them tonight….if I get home any earlier!

brca bullshit

Three Week “Boobie”versary

SisyphusRealized4 Comments

After my last post, I couldn’t bear to post any more. I will probably go back and retro-actively post from my notes about each day, but for now, I have ONE more day until I go back to work.

Backstory –I had several setbacks:

1) I had my right drain pulled on 4/10/12 and the drain pull was painless and quick. Then, however, the nerve pain began. The first night climbing the stairs I had a searing pain (like a fiery knife) in my back just to the left of my right shoulder blade. My mother gave me a vicodin and a valium and put me in bed, and eventually the pain subsided. This happened again the following day, in the exact same spot. My chest spasms continued (and do to this day – but are usually managed by gritting my teeth or digging my nails in my palm…and occasionally 5mg of valium).

2) On 4/13/12, I went back and had my left drain pulled. Again, no pain, just discomfort, and he acknowledged the implant asymmetry and said that we could not discuss a “revision surgery” for at least 3 months – but, he answered none of my questions about the invasive nature of the procedure, healing time or scarring. I then asked for more pain meds and explained about the searing pain in my back in addition to the continual muscle spasms in my chest and was dismissed. He actually asked me if I was seeing a psychiatrist. Through my gritted teeth and tears of pain I accepted the papers he handed me recommending “pain management specialists” and a referral to see a physical therapist …. but I felt like time was going backwards. I honestly was feeling WORSE physically than I had when I came home from the hospital. What was worse was it was close to 4pm when I was able to call the “pain management specialists” and couldn’t get an appointment. I spent the weekend in bed out of fear of having a spasm and not having medicine to deal with it.

3) On Saturday, I was in horrible pain, and took it out on my boyfriend. I was awful. Then, later I had another back spasm in the parking lot of Harris Teeter and J almost had to carry me inside once we got home. He helped me to bed, gave me my very last vicodin and a valium and laid with me until the spasm subsided. It prevented us from watching any of the three RedBox DVDs we rented and wasted most of the evening with me a whimpering mess. Very pathetic … but somehow, he still made me french toast in the morning. Such a good, good man.

4) On Monday, I called my PCP (whom I affectionately call the “pill pusher” because he offers a lot of pharmaceutical options every time I see him). I got an appointment immediately, he wrote both prescriptions without hesitation, then recommended both a “pain management specialist” and a physical therapist. He was both kind and understanding, palpated (gently) my back and chest, and said it was entirely possible that the drain was placed too close to a nerve cluster and that it will be agitated when I do certain motions. He was very kind, and reassuring, and made me realize how cold and uncaring my PS had been with me. Thank goodness for him and his kindness.

Today, though, I woke up early, took J to the metro so he could go to work, came back, took a nap, watching the landing of the Discovery on TV, and then went to the bakery to reassure them I wasn’t dead (since I’d been sending the men in my life to retrieve delicious gluten-free baked goods for the previous 4 days). Then I came home and cleaned and wrote thank-you notes and I’m pretty sure I was more productive today than I have been for the last 4 days combined. One more day until I have to return to work, and I’m starting to get anxious….

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Post-Op with the BS

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Since my breast surgeon also decided to take spring break, I had my follow-up with Dr. Bruce. No drains out, but she did read the pathology report to me: abnormal cells (possible DCIS) but NO malignancy. They even (sorry if this is gross) cored out my nipples and took samples from there too–all clear!

This is wonderful news and I feel much better about the decision I made – it will save my life… I just know it will.

Left breast is slowly drooping more each day and becoming frustrating.

brca bullshit

Post-Op with the PS

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Since my PS AND BS are both out of town this week, I met with Dr. N’s Chief Resident Dr. I at the surgery center in McLean this morning. It was there that I learned three things:

1) My boobs look great. They put 500cc silicone implants in they are convinced I’m going to be happy with them.

2) I cannot OD on Valium. If I’m awake and in pain, then I can have more. I’ve been having a LOT of chest pressure and really have been feeling the muscle spasms as my primary complaint, and Dr. I said I’m not taking enough Valium or Vicodin (bless him).

3. It could be a year before my implants settle and my scars fade and all of that is settled …. but I didn’t do this for beauty – I did it for life.

Tomorrow is the post-op with the BS (or her partner Dr. B) because she’s also on spring break. Will updated tomorrow!

brca bullshit

Days one & two with my new boobies

SisyphusRealized4 Comments

All in all, I’m not in a tremendous amount of pain… I can’t definitively say that I won’t have any, or that it won’t be too much at times, but I woke up from anesthesia to my parents and my handsome man… I was feeling lucky!

The new boobs look swollen and disfigured, but I’ll let that image speak for itself, on the “graphic photos” page on this site. I think they’ll settle down nicely, and probably end up a little smaller than they were before, but I’ll be happy no matter what because of the wonderful thing I did for myself and my family.

I was discharged last night, and my Mom and I headed back here … greeted by two angry kitties! Now, one is in Caroline’s bed (since she left the door open when she came to get her bed frame), and the other is following behind me, per his traditional mama’s boy behavior. Now I’m struggling between awake and asleep wrapped in the beautiful blanket Lisa Mielke made me – so grateful for all the help given to me by so many people! Love you all!

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And I Pray

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To my family, my friends, my handsome man…a thousand thank-yous would never convey the gratitude I feel for your love and support.

After tomorrow, I won’t need to pray nightly that the next day or week or month will be the day that I feel a lump where a lump wasn’t before. I don’t need to pray every time the phone rings that it won’t be bad test results or a doctor telling me I need to have a follow-up test run. My angels will carry me through this surgery and I will wake up ready to start my new life. No more black cloud…only blue skies and happiness.

So now, I pray for anyone struggling to make the decision I did. I pray for all those having complications from their surgeries, and for those that are struggling mentally or physically with the effects of this teeny mutant.

Sure, I pray my surgery goes smoothly, and I pray my pathology reports are clear and I pray that I have an easy recovery…but somehow, I know that whether it’s an easy road or a hard one, I have so many willing and loving helpers that I’ll make it through.

Love to you all–pictures to come either tomorrow or Wednesday! 🙂

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Angels doing their thing…

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After a disturbing conversation with my father about why I needed to fill out the power of attorney forms (which I already did!) and the risk of death-by-anesthesia, I was pretty wigged out last night. Fortunately I was at J’s house, and he calmed me down and we went to sleep early – I actually slept, and didn’t have that horrible nightmare where I’m awake during surgery but can’t say anything… did anyone else have those nightmares?

One of my BRCA sisters in the support group had the same surgery that I’m having yesterday, and she was texting me just hours after the surgery. She was walking, she was moving and she said the pain was bad but manageable. Funny thing was I offered her my two angels to borrow (since I don’t need them until Tuesday) and that’s one of the first things she said: “thank goodness for the angels.” The nurses told her that she’s doing better than most patients, so I may not be that lucky, but knowing that she can do it is just one more reassurance that *I* can do it too. I have been so glad to talk to her today – she seems alert and awake (just bored) and although she said she couldn’t sleep (I have no doubt that I won’t sleep without a sedative as well), she walked the halls with a nurse. Sounds like a pretty incredible first night, and I pray that mine is just the same.

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Feeling scared.

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I know it’s hard to admit when we feel scared, but I went to bed last night feeling scared and didn’t sleep a wink. I’m exhausted, weepy and altogether not myself, and as it’s my last week of work before the surgery, I’m really feeling pressured to get a lot done. I have an appointment with my head shrinker tomorrow, but I’m almost wondering if I shouldn’t call her today….

Also, last night J and I had a conversation that I thought was just a conversation, but he read more like an annoying discussion/minor argument. I didn’t even realize that he was upset until he said the word “goodbye” in a weird tone – so I obsessed over that all night wondering what I did that could have caused him to be upset with me. That got me super emotional because I’m so afraid of everything falling apart right now or projecting my frustrations on him or pressuring him or doing anything except making him as happy as he makes me … it’s like a time travel trip back to January to before the medicines and the yoga and the meditation, and THOSE WERE NOT GOOD TIMES.

Then, it got worse: after no sleep at all, when I got up, I completely forgot that I had my scheduled pre-op conversation today, and she told me that if I had any sign of an infection to go to my doctor immediately. I get off the phone with her, go to the bathroom and suddenly I feel like I have a yeast infection! I wasn’t sure what to do – should I ignore it? Could it be problematic for my surgery? I’m kind of irritated and emotional and stressed… could it be a manifestation of that and not anything actual at all? I’ve been running around all day trying to ask different doctors if I can take this or that before the surgery and playing phone tag – I feel like everything is falling apart – and just yesterday I was *so* together!

I cannot wait for this to be over. If they move my surgery for a little yeast, I will LOSE. MY. SHIT. Still, I know my guardian angels up there will take care of me, so whatever happens will be for the best. I’m a little more zen now because of another calming call from J (who really does go above and beyond) and finally getting in touch with some of the doctors… just not my BS, who really needs to give me the okay to take the medicine. Fingers crossed.

 

 

brca bullshit

100% Preventative

SisyphusRealized1 Comment

What I hadn’t thought about is that this MRI could actually be the piece that reassures me that this surgery has put me AHEAD of the cancer. All along I just assumed I’d get it eventually, whether they found it *right* before the surgery or during the surgery or whatever… but now, the MRI shows no abnormalities (except the lump they’ve biopsied the hell out of) and some small  cysts.

This surgery is now 100% preventative. No chemo. No radiation. No watching my loved ones suffer as they watch me… and I can’t help but look upward to my guardian angels and thank them. I’m ahead of it. My chance of getting breast cancer after March 27th will be 2% – below the average woman’s chance of 4%. There is a song in my heart, and I know who put it there…

I can’t *wait* to wear this shirt… like… can’t wait! 🙂

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Aaaand my lymph nodes enter, stage RIGHT.

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For months now I’ve been complaining – first to my original BS and then to my new one, that while extensive surveillance was being done on my left breast, the last time they surveyed my right breast was an MRI in April 2011 … a year ago.

So, yesterday in my pre-op meeting with my BS (which I scheduled because I wanted to be on the same page – she seemed to be really anti-straight to implant until I took my bra off, and then she was like, “oh, well, actually you are the perfect candidate for this surgery…”). I made the mistake of asking, however, if I would need any node biopsies, and that made her ponder for a moment, look over my old MRI, and then feel me up for a minute before declaring “this feels a little hard, so let’s get an MRI to be sure”. On what side was she pointing? That’s right. The right.

Sigh. MRI’s make me very sick because I’m one of the rare people who’s allergic to the galladinium they use for contrast. I get hives and all sorts of itchies and scratchies… and of course it’s scheduled for 7:30am, so I have to go to work afterwards. Oh well, at least they’re being cautious!