Shower = heaven

I saw Dr. Sterkin yesterday for my 10-day follow-up and to get my right side drain out.  Hooray!  That meant I could shower today, and I did.  It was the best shower ever.  :)  Seriously, if you want to feel absolutely amazing, just go 11 days without showering or washing your hair and then shower.  Instant anti-depressant!

I was even able to work two hours yesterday afternoon.  Two hours was almost enough time to get through my emails from missing 8 1/2 days of work.  It felt really good to be back.

The guidelines to recover from this surgery are pretty intense.  And they've made me more than a little cranky.  In addition to not being able to resume exercise for 8 weeks, I can't reach above my head, or sleep on my side, and I have to wear Spanx so that the uneven fat harvested from my belly settles evenly and not in furrows, like it is now.   I also need a firm, supportive bra to insure that my breasts don't end up all lumpy, too. Seriously, I cannot imagine why anyone would choose elective cosmetic surgery like this.  I'm second-guessing my own vain-ness in wanting reconstructed breasts instead of just going with prostheses.  I would have been "done" a long time ago.  I also just learned that there's not anyone in the area who does nipple tattoos (Dr. Sterkin only does them in combination with nipple reconstruction, which I am NOT doing), so if that's what I want (a 3D nipple tattoo like here or here), I'll have to travel.  Probably also have to pay for it, as opposed to having insurance cover it if I did nipple reconstruction, too.  As someone close to me said, "it comes down to how much you want to pay for nipples that I'm assuming only a handful of people will ever see."  Guess it's time to really think about what else I could/should get tattooed there.  And to search for a good tattoo artist...

As for now, I have all my stitches out (just steri-strips left) and I'm packed into Spanx like a sausage.  But I dare say I smell quite a bit better.  :)

No clearance for work yet.

I had my one-week follow-up appointment with the plastic surgeon this afternoon.  It was originally scheduled for 1:15, and my plan was to see him, get cleared to return to work, and then run into work to pick up my computer and work from home at least a few days this week.  His office called and said he was running late due to a surgery, and switched my appointment to 3:30, so I went to work first and picked up my computer.

Then I was terribly annoyed (and disappointed) to learn that I'm not cleared to return to work yet.

The handout that we got after my surgery was one brief page, and the post-op nurse was a bit annoyed that she didn't have any written discharge instructions, so Greg and I are pretty certain that we had NOT been told that I was supposed to barely move my right arm this first week.  In fact, I was making it a point to use that arm (within comfort--never doing anything painful) so that it wouldn't end up cording again like it had after every other procedure I've had on my right side.  Apparently since my implant is textured, every time I move, the tissue rubs on the textured part of the implant, and oozes fluid.  No wonder I'm still putting out so much in my drains.  Sigh.

I know it is a minor thing in the scheme of things.  Healing is most important and everything looks good.  Bruising is decreasing and there's no signs of infection.  But this is a truly sucky way to spend one of my two weeks of vacation from work.  And I have to re-fill my antibiotic (stinky Sulfa drug) prescription since I still have a drain.  And I *swear* I'm an excellent patient and I would remember if he had told me not to move my arm!

Only now did I get the full description of what I cannot do while I'm healing.  Basically, for 8 weeks, I can't do much of anything.  No aerobic exercise, no carrying anything over 5/10/15/20 lbs. (increasing each two weeks), no stretching over my head.  I can walk, though.  That's encouraged, so I'm open for walk buddies. 

It's really all fine--I just want to get back to normal.  :(

Post-op, days 3-6

Friday I woke up at 5:30 am in a lot of pain.  The stitches--especially those under my right breast--were hurting so bad that it was difficult to catch my breath.  I gulped down my antibiotic and fell back asleep.

Somewhere close to 7:00 am I woke back up and Greg wasn't in bed with me.  I thought that was odd, but to be honest, I was too tired to care.  Next thing I heard was the bedroom door opening and I saw (in the dark, without my glasses on) Greg walking toward me.  But in my muddled head he looked like Cara.  He flopped down on the bed next to me and it took me partway through a conversation with him to realize he WAS Cara!  She'd secretly planned a trip home (overnight--leaving the Twin Cities at midnight) to surprise me.  And it worked.  :)

We spent four days walking, shopping, getting pedicures, cooking, eating, playing games, and just hanging out as a family.  It was fabulous and did such a great job of distracting me from the healing process.


One of the cool things I realized was that I don't have to carry these cards with me anymore:

one for the port-a-cath; two for the expanders

They were for if I had to fly, go through a metal detector, or have an MRI.

~~~~~

Anyway, here I am, six days out of surgery, and on the eve of a visit to the plastic surgeon tomorrow.  I fear it won't be a great visit.

My drains are still pulling out a LOT of fluid.  If it's like my last surgery, I have to be under 10 ml in 24 hours to get them pulled.  The one on my right had 38 ml in the last 24 hours.  <sigh>  I have to wait 24 hours after having the drains pulled to shower, and I don't think I want to go to work having not showered in over a week.  So there's that.  

However, over the last four days, the pain has decreased a lot.  And it's shifted, as the first 4 days the pain was mainly in my incisions.  Now the incisions feel fine (except where the drains are pulling), but my bruising from the liposuction has gotten painful.  Still, I haven't had to take Tylenol more than once a day (not at all today!), and I've been able to gradually increase my steps, getting over 10,000 yesterday!  (Today I had a lot of company/visiting and actually didn't have as many steps)

So we'll see what tomorrow's visit with Dr. Sterkin holds.  Maybe I'll be pleasantly surprised. I will say one thing:  after 5 drains, 2 drains are a piece of cake!

Post-op day 2

Finished one book. Started one knitting project (frogged shrug--repurposing yarn). Took only one nap. Walked 4427 steps. Took 2 Tylenol all day. Feel like I was beaten with a baseball bat from my neck to my thighs, but only when I poke myself. :)

Doing soooo much better.  Hoping to leave the house tomorrow.

Reconstruction Surgery (check)

Well, it's done.  :)   

I have to say, to those of you who said what a breeze this surgery would be, that I wouldn't call it a breeze.  But I am feeling better by the hour.  Greg and I just took a walk around the block and that didn't kill me.

Some things were slightly different from the first surgery.  For one, it was only 4 1/2 hours.  And the anesthesiologist (different one) didn't have me use the motion sickness patch.  In the short term, that was a bad decision (I was really queasy after surgery and the ride down to the car in the wheelchair and the ride home were decidedly NOT pleasant).  But in the long term, I think it was good.  I never had the vision problems and the nausea went away sometime last night.

I also told the anesthesiologist about my TMJ issues and how bad they got after my first surgery.  So instead of the regular way they put in the breathing tube (where he basically said they pull apart your jaw--which is what TMJ is), he used a fiber optic guide to get it in.  So I don't feel like my jaw's screwed up, although I do feel like my throat is a lot more banged up.  Maybe I'm just less "out of it" this time so the little things annoy me.

So bit by bit, here's what they did:

I decided to have the port-a-cath taken out during this surgery.  I know it's supposed to be minor, (done in an office) but I'd also heard that it hurt a lot, so I figured I might as well have it done while I was under.  Also, why not have my plastic surgeon stitch it up?  Probably more meticulous, right?  He also made that incision way over near my armpit so it'll be less visible (not that I really care, but if I have to go through all this, I might as well take the little perks!).

Then there's the implants.  Dr. Sterkin had to make new incisions under my breasts for them because the incisions used for my mastectomy weren't big enough.  He had thought he'd have to put in alloderm (cadaver skin) on the irradiated side to make room, but ended up not needing to.  Those incisions don't hurt much at all.  I'm bruised but its pretty obvious surgical bruising and not very deep.  I have two drains in (compared to five last time) and they have smaller drain tubes.  I'm sure they'll irritate me just as much in a few days, but for now they're okay.

The big surprise in terms of both pain and appearance is where he harvested the fat to fill out my breasts.  When he described it, it was, "we'll just take some fat from your belly to round out your breasts" and I was all, "hell, yeah!"  But it was liposuction (duh) and holy crap am I bruised!  I have a belly-binder to hold things in, but the bruising on my belly and down my thighs is crazy.  Even the post-op nurse couldn't help but make a surprised noise.  I'm assuming that at least part of it is due to my platelets.  Although they were at 85K for my pre-op bloodwork, they tested them yesterday and they'd dropped to 64K, so I got a platelet transfusion  (Once again, thank you to anyone who donates blood, but especially platelets, as I know it takes longer for them to take out the blood, grab the platelets, and then put the blood back)

Other than the bruising, I'm doing really well.  I refused to fill the prescription for Oxycodone and so far my pain is managed fine with regular Tylenol.  I hope to avoid all those other unpleasant narcotic side-effects, too.  :)

I have my follow-up appointment scheduled for next Tuesday afternoon.  My hope is that the drains will come out and I'll be cleared to return to work--at least parttime.  I'm still kind of bummed to not be able to do Summerfest this year, and I don't think I'll be going to the fireworks on the 4th.  But all in all, this went very well.  I have no doubt it's because of all the positive thoughts and prayers that you all sent my way.  Reading everything on Facebook brought tears to my eyes.  Thank you all for continuing on this journey with me!

Surgery #3

I realize it's been quite awhile since my last post. Over two months, in fact--by far the longest I've gone since starting this blog. That, in itself, is a sign of how far I've come. :)

I went two months between visits with Dr. Shah (And it'll be 3 months before I see her again. More baby steps.). My repeat hormone tests solidified the fact that I'm in menopause, so I've switched from tamoxifen to Arimidex. So far, so good, though it's only been 11 days. :)  The reason for the switch is better severe potential side effects (tamoxifen --> endometrial cancer; Arimidex only--> osteoporosis), although anecdotally I've heard that the more-likely side effects are much worse with Arimidex (bone aches). What I've noticed so far is that I'm having very different hot flashes. On tamoxifen, I'd turn beet red and my heart would race. With Arimidex I just start sweating like crazy. (Oh, joy--and if you see me and go to hug me, you might want to remember that tidbit ;))

I also had my first booster shots for the clinical trial (which will be every 6 months for 2 years).  They take blood at each appointment, too.  So I got to make good use of my port.  As my friend Katie says, I ran into a vampire.

I'm psyching myself up for my third breast surgery. (If you want to re-live the others, my double mastectomy with ancillary lymph node dissection on 1/8/15 is chronicled here, and my surgical debridement and re-suturing on 2//15 here.)  This third surgery removes my expanders and replaces them with my permanent gel implants.   I decided 18 months ago to go with shaped silicone implants (called "gummy bears"), so that determined the type of expander I got.  If you want to see the difference between the implants I'm getting, regular silicone,  and saline, here's a photo:

I know I posted about it before, but the expanders that I have look like this.

They're uncomfortable not only because I can feel the metal valve used to add saline, but also due to their size.  I feel them under my arms, and they make things like bike riding difficult. 

Therefore this is the surgery I'd been looking forward to for over a year.  However, now that it's here, I'm a bit nervous.  I keep telling myself that I did just fine with a much more invasive, longer surgery and that this is just cosmetic.  But it's still surgery and as I read over my blog posts (and my private journal) from the first surgery, I may have forgotten just how rough it was!  I'm mostly afraid that I'll exacerbate my TMJ, which has gotten so much better after 6 months of wearing splints.  I don't want to un-do that!  

I'm expected to need two weeks to recover.  I'm hoping it won't take that long, but I've stocked up on reading material (our first 3 book club books now that we've re-formed):

And picked a knitting project:

I'm hoping I'll be up to visiting, and be able to resume walking quickly.

At any rate, all of you have been so wonderful with all the other crap I've had to go through. If you have a chance, send me some positive, successful-surgery-without-needing-a-platelet-transfusion thoughts on Tuesday.  Surgery is scheduled to begin at 7:30 am and last 4 hours.  Greg has said he'll post updates on Facebook.

~~~~~

Other good stuff is happening.  I have enough real hair to have something done with it, so I did--got it highlighted and cut and then we had family photos taken, including some fun ones:

Travis turned 18 and graduated from high school. The time goes so fast.  I still wonder how this baby:

Became this accomplished man:

And finally, our remodeling project is done!  Photos (before and after) are on unpinkening.blogspot.com.  

~~~~~

Happy summer, everyone.  Here's to speedy healing so we can still get some Festivals, Bier Garten visits, and beach trips in.

Herceptin (check)

Today I had my final (fingers crossed) Herceptin.  The last time I will be looking out these huge windows while having (life saving) poison pumped into me (fingers crossed).

Trusty infusion pump

Greg and I went out for breakfast and then he came to my appointment with Dr. Shah.

Almost last port access before it's gone

And then I had enough time to finish (and bind off) my bright pink shrug that I started so many months ago, also in the infusion chair.

It definitely needs blocking!

So a bit of catch-up since last time I posted (March 5th):

My MUGA scan came back at a good level.  The MUGA checks if the heart's ventricles are pumping at a correct level.  It's measured in percentages, and a score of 50% or higher is considered normal.  My score this time around was 61%.  The other scores, were 62% (pre-chemo), 56% (post-chemo, but mid-Herceptin), and 68% post-post chemo and mid-Herceptin.  Dr. Shah won't continue to monitor my heart, as she's very pleased with my numbers.

I had an appointment with my new GYN (my former one retired and I hadn't seen one for almost two years--which was when I was diagnosed with Endometriosis and put on birth control pills (which still make me wonder if that kicked my ER+ tumor into high gear, but I digress).  My GYN looked at my hormone levels and was pretty convinced that I am in menopause.  She supports the switch from Tamoxifen to Aromatase Inhibitors, but respects Dr. Shah's desire to re-test before switching me.  I don't have to be watched any more closely by the GYN due to the increased risk of endometrial cancer (unless I have symptoms), so that was nice to know.  Trying to decrease those visits any way I can--current count is 129 appointments related to my breast cancer diagnosis.

I met with my plastic surgeon and got the OK for my final (reconstruction) surgery.  It's scheduled for June 28th at 7:30 am.  It should last about 4 hours, then I'll be in recovery for about 2 hours and be able to go home (hooray!).  I will have surgical drains again (ugh!), but only two this time.  And I'm supposed to take 2 weeks off of work.  When pressured, Dr. Sterkin said maybe I could return earlier, but not until the drains are gone.  I have only (this month) earned sick leave at the rate of one day a month, and I've been withdrawing time for doctor appointments already, so I'm still a little down about having to use vacation time to sit home recovering from surgery.  Adding insult to injury, my surgery is scheduled for the day before Summerfest begins, so my plan to "do Summerfest" is dashed.  <whine, whine, whine>  On the other hand, the cool things about my surgery include not only getting rid of the uncomfortable saline-filled expanders, but also getting rid of my port-a-cath, and having my new breasts "rounded out" with fat lipo-suctioned from my belly!  (silver linings...)  I did check with Dr. Shah today, and while there is a (debatable) risk with procedures done to the arm after lymph nodes are removed, that doesn't apply to the chest.  What does that mean?  I'm clear to get tattoos after my reconstruction!

I spent a lot of time today talking to Dr. Shah about next steps.  In cancer circles, they call this phase "Survivorship."  It's common to experience changes physically, socially and emotionally.  It's common to fall into a depression of sorts when active treatment stops. Given my history of depression, I'm acutely aware of this possibility.  I definitely know that there is a chance of recurrence.  I am trying to decrease my fears of recurrence, and part of that was talking to Dr. Shah about what to do if it does come back.  My follow-up with her will begin in 2 months, including bloodwork and a clinical breast exam.  If all looks good, my appointments will gradually spread out (3 months, 4 months, 6 months...).  My greatest fear has centered around the fact that my tumors were highly Her2+.  That indicates an aggressive tumor with high chance of recurrence.  But if it does come back, I could go back on Herceptin (which I tolerated well), and there are other therapies that are being developed, targeted at Her2+ cancers.  Dr. Shah shared that she has one patient who's on her third year of Herceptin, post recurrence.  So there are options.

When I first sat down with Dr. Shah to discuss my treatment options back in February of 2015, she shared statistics with me about how likely it is to remain alive and cancer-free, depending on which treatments you chose (given my particular characteristics).  I remember barely listening at the time and just being determined to do everything possible to fight, even if it only increased my chances of survival a few percentage points.  I found that chart this last weekend, and then went to the website where (I think) she got the data from.  It's called Cancermath.net.  Now that I've already survived beyond that time of decisions, my numbers have improved!  :)  So for those who like stats, here's my survival curve, using the specifics of my tumor and the treatments I've done:

I like stats, and those are pretty good odds of survival for many years, in my opinion.  It cuts my remaining time approximately in half, but as I remember distinctly getting my diagnosis and not knowing if I had even a year left, these numbers are actually quite comforting.  I am planning to refer to them when I have my inevitable dip into fears of recurrence.

It was kind of sad to say goodbye to the nurses, MAs, and receptionists today.  I know I'll see some of them on and off for many years yet, but I don't plan to sit in the infusion chairs in the chemo bay for a long time (if ever again).  Today, for the first time in all my chemo/infusion appointments, a patient sitting next to me was ill--vomiting throughout his treatment.  It filled me with an overwhelming desire to bolt, but it also made me realize how truly fortunate I have been.  I have had so many visits and treatments and things done to me, and I have had side effects, and likely will always have some of them that remain.  But in the scheme of things, my treatments have been very well tolerated.  My side effects are annoying, and they linger (I'm talking to you, damn neuropathy!), but I've made it through the active treatments and I feel unbelievably lucky.  I've put up with things I never thought I'd be able to do (like a 45 minute MRI), and I've learned a lot.  I've learned about cancer, immunity, the nervous system, heart function, and hormones--and I've learned that I have the most amazing family and friends in the world.  Thank you all for reading, writing, texting, and hugging me.  I could not have done it without you.