The legacy of cancer

It's been a few weeks since I wrote.  In that time:

1.  I started (and was discharged from) OT for the lymphedema.  The swelling is still there, but it's not quite as bad and--what you really hope for--it hasn't gotten worse.  I have been measured for custom compression garments, but they haven't arrived yet, so I'm still wearing the (very ratty) temporary stuff. 

2. I've quit wearing my daytime TMJ brace.  My teeth aren't perfectly back to normal, but so far, so good with only the night brace.

3.  I've graduated from the post-surgery compression garments.  It timed perfectly with the fall weather and drop in temps by 10-20 degrees, so just when an extra layer wouldn't have been the worst thing.  :)  It's still very nice to be done with that.  

4.  I got my baseline bone density scan (I'm average, which is good).  As long as I'm on aromatase inhibitors, I'll get them regularly to check for osteoporosis.

5.  I took two weeks off of the Arimidex and the bone aches almost completely disappeared!  So now I'm trying out Femara.  I appreciate any non-achy vibes sent my way!  

6.  I picked up a cold somewhere, which seems to hit me extra hard.  I'm still so tired, that adding one more thing wipes me out.  But I'm pulling out of that, too.

7.  And I lost my mother (obituary here).  Although she technically died from pneumonia, it was cancer that killed her.  In 2008 she was diagnosed with Stage 4 lung cancer.  At the time of her diagnosis, the median survival time of those diagnosed with stage 4 lung cancer was 8 months.  The 5 year survival rate was 4%.  My mom made it 8 1/2 years post-diagnosis.  She was able to move near me (more importantly, near her grandkids), and to get treatment at Froedtert, which no doubt prolonged her life.  She had two recurrences (to her lungs again, and then to her brain), and each time, cancer took a little more from her life.  By the last few years of her life, it had taken so much.  She lost the ability to be self-sufficient.  She lost the ability to walk.  Her hearing deteriorated, and while hearing aids may have helped a little, they didn't fix things.  And the cancer changed her from one of the most outgoing, giving, social people I've ever known to someone who turned more and more into herself.  I don't think it bothered her, but I selfishly wanted the mom who'd I'd grown up with--the mom who I would talk to multiple times a day, and that was the first person I wanted to tell about everything I did, and everything my kids did.  

Cancer also took my dad, 13 1/2 years ago, at age 62.  It was a different cancer, agnogenic myeloid metaplasia, and it took him sooner after diagnosis.  In 2002, there were very few treatments, and none of them worked for him.

I have other relatives who have battled different cancers.  One of my first appointments post-diagnosis was with the genetic counselor, who mapped out my pedigree, with squares and circles, some filled and some open.  I had genetic testing done for the 17 most common genes known to be linked to breast cancer.  I tested negative for all of them.  The other cases of cancer in my family are varied types.  There's not a definite link between my parents' cancers and mine.  As has been shown, the majority of cancer cannot be traced to genetics. Whether it's just bad luck, or environmental exposures and behavioral choices, lots of people are getting cancer.  But as we are living longer, our ability to screen for things like cancer is improving, and best of all, more people are living--and living longer--after diagnosis.  I try not to think about what that means if my dad (or my mom) had been diagnosed even a few years later.  What it DOES mean is that there's not necessarily a "legacy of cancer"--at least not genetically.  It is good to know about screenings and things to watch for, but that's something that everyone should do, regardless of family history.  The American Cancer Society no longer recommends breast self exams, but they DO recommend being familiar with your own breasts, so that you know if something changes.  I think that's true about your body in general.  YOU know your body best and if something seems off, find out why.  

The one thing I will take from my mom's cancer story is how she broke the odds.  Time and time again, her doctors and nurses would tell her how tough she was.  She was a role model to me for not listening to the statistics.  It's tough, but in the end, even the best statistical predictions have only a 99% confidence interval.  That's plenty of room for exceptions.  :)

Breast Cancer: The gift that keeps on giving

I apologize in advance for being kinda whiny.  I swear, after my last post, I was all set to get on with living my life.  But unfortunately, that just won't really ever be possible.  Once you've got a cancer diagnosis, nothing in your life will EVER be "nothing" again.

A little over a week ago, I had this strange pain in the middle finger on my right hand.  It felt bruised, hurt to bend, and the top of my right hand also felt bruised.  It seemed as though I'd jammed my middle finger somehow (being naturally clumsy, that would normally be entirely possible, but since I bruise so easily, if that would have been the cause, my whole hand would have been purple, so I was pretty sure that wasn't what caused it).  I wondered for several days if I should "do" something about it (as that pesky "L" word is always at the back of my mind, given that I had 12 lymph nodes removed), and I googled to see if "lymphedema in middle finger" was a thing, but I couldn't find anything that made me think that's what it was.  So I chalked it up to being paranoid/borderline hypochondriac and ignored it.

Monday night my finger swelled up so much that I couldn't see the creases in my knuckle.  I couldn't bend it.  I couldn't put the fingers on my hand together.  And of course it was a holiday evening and I didn't think it was worth a trip to the ER.  But I looked up "exercises for swollen finger" and did some fist clenching and slept (fitfully) with my hand above my heart until I could call the nurse navigator in the morning.

Skipping ahead, I got in to see the OT, Audrey, this morning.  It IS lymphedema.  It's Stage 1, which is reversible.  In addition, my old friend Cording has returned, and there is a lot of scar tissue and lymph blockage post-surgically.  Audrey told me how happy she was that I came in when I did, and that we will work with exercises, lymphatic drainage/massage, and I now get to wear a lovely compression glove and sleeve.

This is the temporary sleeve--I'll get measured for a custom made one sometime next week

At this point I need to wear it day and night, except when showering.  <here comes the whine>  It's hot and tight and itchy and it hurts to bend my arm in it.  It's hard to type or text. And it's really ugly.  I feel like a sausage when you take into account the damn Spanx that cover me from chest to knee and now this.  The part that is annoying me the most is that this is just one more example of how life post-cancer will never be normal again.  (I have heard this from other survivors as well.)  Achy joints aren't necessarily arthritis--they're possibly bone mets or leukemia from the chemo.  Stress headache?  Might be brain mets.  Might be a stomach ache from that enchilada, or maybe it's your liver.  

THIS TOTALLY SUCKS AND CANCER HAS TAKEN OVER EVERY PART OF MY LIFE FROM USING VACATION TIME FOR DOCTOR APPOINTMENTS TO NEEDING TO WEAR A DENTAL APPLIANCE FROM THE SURGICAL INTUBATION TO NEEDING TO BRING A CHANGE OF CLOTHING PLACES BECAUSE THE "HOT FLASHES" LEAVE ME DRIPPING AND WHEN I'M FINALLY CLEARED TO RUN AGAIN, THE PAIN FROM THE AROMATASE INHIBITOR MAKES ME WADDLE IN PAIN AFTERWARDS.

~~~~~

OK, I'm better.  I am very fortunate that I know these^ things.  I know to trust myself when something doesn't feel right.  I have good medical insurance and a wonderful team who will check things out and will be honest with me.  I *did* seek out help at Stage 1 (reversible) lymphedema, and I can do something about it.  I have a wonderfully understanding, flexible job and am surrounded by so much support from family and friends that I wish I could share it with those who don't have the support.  Also, I can ride a bike again--for real.  The new, permanent breast implants do not rub on my arms and make them go numb.    Is it okay, though, if, despite these things, I still hate my new "normal"?

Post-surgery restrictions lifted!

I had my 8 week follow-up appointment with the plastic surgeon today.  He is thrilled with the way the surgery went and how I look (and feel; yes, my appointments do include a groping).  He has, in the past, had to have his memory refreshed on which side I would have/did have radiation on, which I just chalked up to him having way too many patients to remember that kind of stuff.  But today he said it was remarkable that you could not tell by looking which side I had irradiated.  He said I am the first of his patients (and he's been doing this a long time) that didn't have post-radiation skin darkening.  It's especially odd, given that I both freckle and burn so easily.  It wasn't until I left the office that I began to wonder if it was because I slathered on so much aloe vera during radiation (minimum of 3x/day) that I didn't have permanent skin damage...

So anyway, I still have to wear the Spanx for another month, which is kind of annoying, but the weather is getting a bit cooler, and it's only one more month.  I am cleared to reach over my head, to exercise, to sleep on my side, and even to get my breasts tattooed (next month).  Hooray!  

Life has been busy these last few weeks.  We took a mini-vacation Up North to see my mom and my brother and his family.  The older kids moved into their dorms/apartments to start the fall semester.  Mira began her reign as an only child.  

It's been a long journey since finding my lump over 21 months ago.  I'm not completely done with all my treatments,  I'm still experiencing my fair share of side effects, and I know I'll never be able to not think about recurrence.  But I've also come a long way and that's something pretty important to remember. Perhaps it was best summed up by Dr. Sterkin's response when I asked if I could run, bike, do sit-ups...  He said, "You are free to do any of those things.  It's time for you to start living your life normally again and put all of this behind you."  And that's exactly what I plan to do!

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.

Keep on keeping on

I know it's been a long time since I've blogged here, as a few of you have asked me when my next post will be.  I've composed a few little posts in my head over the last 6 weeks, but not really felt any of them were important enough to share.  But now there's a lot of little things.  

So this week marks a year since I started chemo.  It was strange to sit in the Cancer Center for my Herceptin infusion this week and think about that.  On one hand, it's been one looooong year.  On the other hand, it's only been a year since meeting all the oncology nurses and aides, and really getting to know them all so well (when you see them at least every three weeks, and as frequently as 2x/week, they become a big part of your life!).  

I had my third-to-last Herceptin this week on Wednesday.  If all goes well, my final infusion will be on April 13th.  I asked Dr. Shah if I could make an appointment with Dr. Lal on April 14th to pull out my port-a-cath and she laughed and told me she really prefers for her patients to keep them in for a year after treatment concludes (she didn't add the unspoken "just in case..." but I heard it anyway).  She said that she understood my desire to get rid of it, and if I really wanted to, I could get it taken out, but she recommended I see if Dr. Sterkin (the plastic surgeon) could just pull it out when he finished the reconstruction this Spring/Summer.  I have an appointment with him on March 21st, so I'll ask then.  

Several of my BC survivor friends are on aromatase inhibitors (Arimidex is most common) instead of Tamoxifen, as the early studies show that it is more effective, and without as many dangerous side-effects.  Tamoxifen can be used whether you're pre- or post-menopausal, but if you're still pre-menopausal, you can be given Lupron injections to essentially shut down your ovaries since Arimidex only blocks estrogen from non-ovary sources.  Dr. Shah and I had talked about me switching after about 2 years of being on Tamoxifen--to insure I'd gone through menopause and therefore wouldn't need the Lupron shots.  The more I've read about the aromatase inhibitors, the more I think it makes sense to get on them ASAP.  Studies have shown significant reduction of breast cancer recurrence in using them over using Tamoxifen, if you have cancer that's responsive to chemotherapy (If you don't need chemo, Tamoxifen is just as effective).  This is especially true in the first year (RR: 0.64 (0.52-0.78)) as well as in years 2-4 (RR: 0.80 (0.68-0.93)).  Furthermore, ten year mortality was also significantly lower with aromatase inhibitors (RR: 0.85 (0.75-0.96)).  All relative risks included for my Public Health friends.  :)  In addition, the already-known benefit of aromatase inhibitors is the decrease in endometrial cancers (RR: 0.33), though there is an increase in bone fractures over Tamoxifen use (RR: 1.42).

So I talked a bit more to Dr. Shah about it and since I will be 1 year LMP this month, she suggested they check my hormone levels to see if I'd gone through menopause on my own. She said that sometimes chemo causes reversible menopause, so she would want to re-check them in three months, but that almost gets me through the protection of Herceptin, so I feel okay about that.  I haven't talked to her yet, but I did get my hormone level results and they're pretty supportive of me having truly becoming menopausal:

FSH: 82.5 mIU/mL  (25.8 - 134 is indicative of being menopausal)
LH:  39.0 mIU/ml (pre-menopausal is 5-25; menopausal is 14.2-52.3)
Estradiol:  <5.0 pg/mL (pre-menopausal is 30-400; menopausal is 0-30)

I won't see Dr. Shah again until my last Herceptin (6 weeks), so I'm sure we'll discuss the plan at that point.  

As long as they were doing blood tests, she ran a CBC again.  Almost all my levels were good except for the platelets, of course.  They were 76 thou/mCL.  My hemoglobin is still low (11.7 gm/dL), but relatively high for me!  

Dr. Shah also scheduled me for my final (?) MUGA heart scan.  That's scheduled for the 21st.  Hopefully my score continues to climb and any potential heart damage from the chemo was reversed.

This week was also exciting because I was (again--third time's a charm?) discharged from OT.  As lovely as it has been to get a massage every week, I'm pretty happy to not have to make another trip to Water Tower Medical Commons.  I hit a kind of low point in February when the unfairness of having to use vacation time for my doctor appointments hit me (I don't have any sick leave yet).  In Grad School, I had tremendous guilt about taking any time off, so I'd planned to actually take a vacation after graduation, and then recovery was much rougher than I thought it would be, so very little fun was had.  Now I have a full-time job with paid vacation and I didn't plan to use it to attend medical appointments!  I shouldn't complain, because on the other hand, I *have* vacation time, so I can still be paid while seeing the doctor, the dentist, the OT, etc.  Many others do not.  I will finally have earned that sick leave about the time my appointments switch over to "infrequent."  Here's hoping I get to bank almost all of that earned sick leave.  :)

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I have to admit that my goal of increasing exercise has not come to fruition.  Even yoga hasn't happened, although much of that is because things keep popping up on Wednesdays.  I am telling myself that as the days get longer and warmer, I will be more inclined to exercise outdoors (I already know I hate indoor stuff).

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The rest of my time has been spent on something terribly exciting: remodeling the house!  When we moved in about 15 years ago, there were several things we wanted to change.  We then switched into more of the crisis reaction--replacing things as they broke and had to be fixed.  Now that we're in more of a normal routine (that is, two incomes, healthy :)), we started to look at some things we could do to fix up the house.  Fortuitously, interest rates are crazy low now, so we're refinancing and taking out money to re-do a bunch of stuff all at once.  I'm blogging about it (very simply--mostly just photos) at http://unpinkening.blogspot.com.

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Other than that, we've been having lots of fun.  Cara was home all January and then came back last weekend to see Travis in the HS production of Grease!  It's my favorite musical and it's a FABULOUS production.  I've gone four times.

This week Mira starts practice for the Middle School Musical--Shrek.  I love our school district and all that they do.

And it's March.  That's almost Spring, right?  

Routines and complaints

I started this post on Tuesday, when I was in a particularly cranky mood.  But I didn't hit "post" and some things have improved since then, so that's good.  :)  Updates included in italics.

I haven't written much because there hasn't been a lot to write about!  My life has fallen into a pretty nice routine.  I work full-time.  I do fun stuff many evenings and weekends.  I sleep--hard!

I did a spot check and I'm up to 112 appointments related to the breast cancer.  Yikes.  I'm also essentially done with the clinical trial.  I will have 4 boosters 6 months apart, and the big test is on February 3rd.  That's when they do the DTH to see if my body has developed an immune response to the vaccinations I've been getting (if they're real vaccines or the control).  If my immunology skills/memory is correct, I'm hoping for a response (red swelling) of 10 cm or greater.  

I've had a lot of people ask me how I'm feeling, and it's kind of a strange answer.  It's pretty obvious that the acute part of my treatment is over.  Even though I'm still doing Herceptin every 3 weeks, other than the vision issues the first week or so, it doesn't impact my life that much.  I'm taking the Tamoxifen and (knock wood loudly) it doesn't affect me much either.  However, I've crossed over into the land of long-term side effects.  There are numerous articles on the internet about such side effects (here's one), but they certainly are about as varied as are the short-term side effects of cancer treatments.  Some that have been particularly annoying follow.

*I developed TMJ problems last year. My dentist thinks it's at least partially due to my being anesthetized (and intubated) so long.  I've ground my teeth most of my life, but I didn't have this kind of jaw pain until last spring.  I had gotten to the point where I couldn't open my mouth wide enough to eat a sandwich or even a banana.  So I have a TMJ splint now.  I think it's too early to know whether it's fixing the TMJ, but it certainly has given me a lot of other annoyances.  Much like having braces, it makes my teeth ache and it has cut up my tongue and cheeks.  Besides that, I have this wonderful lisp since I have a big chunk of plastic in my mouth all the time.  Yes, it's an all-the-time splint and not just a night one.  It's hard to eat with it in.  I'm hopeful that it'll help me lose weight at least.  :) (Update: at my 10 day check, my dentist trimmed back the splint and it's a lot less annoying now.  I can tell there's significantly less pain in my jaw and I'm able to open it wider.  My lisp is lessened--though not gone--and I can eat a lot more foods with it in.)

*The radiation oncologist said I could continue to see "tissue changes" for several months after radiation was done.  The plastic surgeon said the same, which is why I won't get my permanent breasts until May or so.  I didn't believe them.  But about a month ago, my right side got really tight, my range of motion decreased, and I felt kind of bruised on my right side ribcage.  It's gotten gradually worse and my right arm is numb a lot of the time.  I've got a call in to the OT to have her measure me.  I hate to even say the dreaded word, but I fear it might be lymphedema.   Hoping it's just those "tissue changes."  (Update: I have an appointment with Audrey the OT on Monday morning.  She will measure me for lymphedema, and work on some lymphatic drainage and stretching.)

*I am still experiencing peripheral neuropathy, which is decidedly worse in the cold.  While the rest of my body is hot-flashing, my feet are always freezing.  And numb.  (Update: issues continue, but the temps are starting to climb back up and I'm hoping to get more walking and/or running in, in hopes that I can decrease the neuropathy that way.  I also went to yoga--once--and am trying to get myself to do that more regularly.  If anyone wants to do the simplest yoga with me on Wednesday nights at 7:30 at CORE El Centro, let me know.  My doctor said having an exercise buddy makes it tougher to back out!)

*I'm tired. I kept telling myself it was because of the chemo or the radiation or the fact that I was working two jobs or working more-than-fulltime or taking care of family.  But here I am, working one plain, ordinary 40 hour a week job.  No more chemo or radiation.  My mom's moved and the kids are pretty self-sufficient.  And I'm still tired.  Really, really, really tired.  Not chemo-so-tired-I-might-cry, but tired.  (See above about yoga--the idea of heading out into the cold at 7:30 when I'm so tired is NOT appealing.)

*Chemo brain is real.  And it's scary.  I've always had a fabulous memory for people, places, recipes, you-name-it.  And I can't remember entire conversations now.  Names?  Not a chance.  I am writing notes to myself everywhere, and sometimes I read those notes and if they weren't in my handwriting, I'd swear I'd never heard what they say.  It's embarrassing.  And it's frustrating.  The one thing I do promise myself is that I will not be upset if someone reminds me of something that I have said or done (or promised to do) and have forgotten.  So if you're reading this and I've forgotten something related to you, please let me know.  It's frustrating and embarrassing, but would be much worse if I weren't reminded.


OK, with all that complaining out of the way, I have to say that I'm still happier than I was my last year in Grad School.  :)

I've been enjoying what wonderful big people my kids have become.  Having Cara home this month has been great and I'll miss her so much when she heads back to the Twin Cities next week.

Cara & I working at Starbucks while Mira attends Girls Who Code

Travis has had a very busy month with finishing the semester, taking finals, writing college application essays, working at Culver's, and practicing for the HS musical (Grease).  He also earned an "A" in his very college course (3rd Semester Calculus).  

Mira is a completely delightful teenager (so far).  She seems to be not-hating the rest of her family as much as of late, and in addition to all her school activities, she's continuing with Girls Who Code at Marquette University and just started taking voice lessons.  And she's selling Girl Scout cookies, too, if anyone doesn't have another source.

All three kids have been great about playing games with Greg and I and we love learning more about them through that outlet.  I don't think I've laughed as much in this last month as I did the entire year before!  December and January have been a wonderful gift.

As I was cleaning out some clutter in my room, I came across the journal that my friend Magda gave me after my surgery.  I used the paper journal to write down things that I didn't really see the need to blog about.  It was the rawer version of my recovery.  And in reading it over, I can see how far I really have come in this last year.  It's easy to think that the acute part of my recovery was easier when it's behind me and the chronic stuff is here now, but reading my journal reminds me just how much easier the "now" is.  I'm glad I have that reminder (especially with how crappy my chemo-brain memory is!  LOL).

Blogaversary

I've been meaning to post for several weeks now, but life kind of took off and dragged me behind it...

However, TimeHop reminded me that a year ago was when I started this blog.  Prior to that, I'd only told a few close friends (and family) about my diagnosis, but I definitely went public with the creation of the blog.  Once again, the outpouring of support was awesome--and I'm so happy I decided to be public through it all.

So since the last time I posted, a few more things have happened.

I finished the immunization part of my clinical trial (will still have boosters every 6 months four more times).  This is exciting for two reasons.  First, it will cut my every-three-week Herceptin appointments in half time-wise.  Secondly, I'll be able to stop taking the preventative Claritin doses.    I don't remember if I shared how the immunizations are given. I get (got) 4 intradermal doses in my left thigh.  That's like the TB test where they put a bubble of liquid under the skin.  This is what they look like about 15 minutes after they're given.

Over the next 24 hours, the redness fades, then comes back unbelievably itchy!  

I'm also at the 9 month point in my 12 month Herceptin course.  That's good because at least one preliminary study showed similar efficacy of 9 months of Herceptin and 12 months, so even if I were to develop side effects that prevent me from completing the full course, I've gotten in the majority of treatment (and there's no sign of heart issues--my last MUGA scan in November actually showed improvement of heart function--68%--from the one done after chemo--56%).  

I no longer need blood work done at every appointment.  This last week Dr. Shah did some to check on a more routine basis.
WBC:  3.9K/mcL
Platelets:  85K/mcL  (low, but about normal for me)
Hemoglobin:  11.9 gm.dL (just barely low--pretty good for me!)

I've also been able to successfully titrate up to the full dose of Tamoxifen (20 mg/day) without the side effects I had when I first started it.  I've been splitting the dose and taking half in the morning and half at night, but I'm hoping to try to combine them into a single dose a day.  I hate having to remember pills twice a day.

The Effexor experiment was a terrible failure!  It's supposed to help with the side effects of taking Tamoxifen (hot flashes, mainly).  I think it was helping with that, but it had its own side effect of spiraling me down into a pit of anxiety!  The same thing happened when I tried a different anti-depressant (Wellbutrin) several years ago, so I'm thinking that I don't do well with non-SSRI antidepressants.  Unfortunately, SSRIs interfere with Tamoxifen.  On the bright side, though, I haven't needed one.  Fingers crossed that it keeps up through the winter.  I have my Happy Light at the ready just in case.  :)  

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I am now down to a single (full-time) job.  As much as I loved teaching, putting that on top of learning a new job was a bit stressful.  I do hope to be able to teach again in the not-too-distant future, but am enjoying some time off now.

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I've really enjoyed having nights and weekends free (see above) to hang out with my friends and family again.  Cara is home for the whole month of January, which is great.  We've spent a lot of time playing goofy family games (if you haven't checked out Jackbox.tv,  I highly recommend it!  You need an Xbox, PS or Steam account and a bunch of smart phones or tablets to play).  It's nice to also have time to cook--which I find very relaxing.

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And I've been knitting more again.  While moving Mom's stuff out of her house, I came across all her knitting stuff.  I'm working on "busting her stash" (that's knitting talk for using up the un-used yarn she had) and trying to finish some of her UFO's (unfinished objects).  I love my Thursday night knitting group (email or message me if you want to join us and I'll send you details). I've been on a dishcloth kick lately.

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Finally, I plan to try to get my weight under control with this new year.  I am ashamed to say that I have gained almost 35 lbs. over the course of my treatment.  I know it won't be easy to drop all that weight (possibly impossible, given that I'm now "post-menopausal" which makes weight loss a lot harder), but I feel generally yucky being this heavy.  I'm not going to focus so much on the weight loss, but on becoming healthier with exercise and hoping the weight goes with it.  I've stopped running and want to get back to that.  I also want to start yoga, but am not sure when or where or how to fit it in.  I'm open for taking walks anytime, anywhere, as that's always an easy way to bring in exercise.  And I'm open to FitBit challenges from anyone.  

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Here's to an amazing 2016 for all of us.  I'm making Hoppin John with greens today to help insure that.   :)