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.