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.

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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"?

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.

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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.