Fifty Shades of Grey

So my mother wants me to go see this with her.  Yes. You read that right. My mother.  I have no interest in the movie. I had no interest in the books. I’m not a prude, exactly. I just don’t like bad literature. Life is short and there is plenty to read without feeling the need to read something just because everyone else is.   Hearing it described as porn for middle aged women did  nothing to pique my interest.  Actually I had never heard of the series at all until my mother told me about it.  Her friend had recommended it.  She was sharing this bit of information as we were in the elevator on our way to chemo.  And her description of this literary masterpiece continued through the usual 30 minute wait, my blood draw, nurses visit and 4 hour chemo treatment with a short respite while my doctor was talking to me.  She got more and more animated in her defense of this book series (though I had said nothing beyond I wasn’t interested in reading it) until she was throwing around words like “erotic” with wild abandon. Keep in mind there is only a modicum of privacy in the chemo room in the form of curtains. Curtains which are made of ordinary material, not sound proof foam or titanium steel, and she was not using her inside voice.  I couldn’t help but notice the television sets on either side of me kept getting louder and louder and soon the words “come on down” “erotica” and “you are not the baby daddy” were becoming all jumbled in my head.  I couldn’t run away at this point because I was tethered to an infusion pump.  Blissfully the massive dose of Benadryl started to take effect and I was just on the edge of consciousness when the massive dose of steroids kicked in and I sat up with a start.  Now I was wide awake but too tired to defend myself against the onslaught of a bad literary review. Fuck.  Soon a nurse who was passing by heard my mother’s one sided conversation about Fifty Shades and poked her head in the curtain to announce she was reading it too and OH EM GEE isn’t it GOOD?.  Note to self: make sure this nurse is never in charge of pumping poison through the small opening in your chest.. her judgment is suspect.   At the end of my treatment she bade us a cheerful goodbye and gleefully told me she would be thinking of me when she read 50 Shades that night. I deadpanned..”Please don’t”.

My mother has tried to get me to read the books a few more times and will vehemently defend them, even in the absence of any criticism.   So. Fast forward to the movie opening.  She is determined we are going. I am determined to jump off the George Carter bridge to keep that from happening.

Actually I read recently that people are going to show up in “fetish wear”. She has no idea this is a possibility. I may take her just for the comedic material it would provide.   I’m also planning to tell my 84 year old father who loves WWII movies that this is about 40s Germany and promises lots of action.  Why not?  Doesn’t hurt to keep my ticket to hell updated.

b1436b581ca2af308a8cb7dafa7afb347b89d149

Six month stay of elocution.

How does one end a blog? Do you just stop blogging or make some formal announcement?  I started this blog as a way to wrap my head around my diagnosis/treatment (a sort of self -therapy if you will) as well as to keep friends and family in the know without endless facebook updates. I would post a link to FB and those that wanted to could be informed.  What I didn’t expect to happen was finding a whole cyber community of other cancer patients/survivors/caregivers and genuinely wanting to keep up with them.  I never expected anyone outside my circle of family and friends to find, much less follow this blog.  That was kind of cool 🙂  I could just shift focus and blog about other things, but somehow now that I am done active treatment that just seems self-indulgent. At least on a blog that was specifically started to talk about breast cancer.  

So one final update.. I saw the oncologist yesterday and was given a clean bill of health. My tether has been lengthened to 6 months before my next check and the next time I have anything to report!

I’m going to continue to follow and comment on the blogs of the amazing folks I have met here in the blogosphere and who knows? I may decide I have something to blog about down the road but for now.. thanks for following along and all the support. 

Image

Waiting to exhale

I finally got the call back from my mammogram. This wasn’t just any mammogram.. it was the first one post diagnosis.  I don’t recall ever having to wait more than a week for results before.  Usually my doctor would call in a day or two to say all is well (or not..in the case of last year’s) and then I would get the generic pink form letter from radiology confirming.  I knew that my doctor(s) got the results a week ago. Still, I hadn’t heard a peep from anyone.  I called the cancer center yesterday and left a message which was finally returned this morning.  All clear.  I was too happy to ask if it was common practice to make a breast cancer patient wait for results of her mammogram.  I know they are read the day of the test or the next day at the very latest.

No one on my team of medical experts has used  the words “cancer free” yet. Or even “no evidence of disease”.   Since these are the same people who had no problem making me hold my breath for over a week I’m going to assume they just don’t see the value in putting cancer patient’s minds at ease, so I’ll say it. Cancer Free!  

Bits n Pieces

I haven’t blogged for a bit. Life is pretty much back to normal. We have had a few household projects, the main one being redoing my office. I should say transforming my former junk room into a workable office space. It was one of these rooms that anything I didn’t know what to do with would get dumped in.  I had one small bookcase groaning under piles of books and more piles in every corner.  This summer when we redid the bathroom we sacrificed the office closet and that left us with some extra wall space, which is now sporting new bookshelves. I spent all weekend sorting, dusting (good Lord where does it all come from?) and re shelving books by author and genre. I made room for some of my sister’s books as well (she got two whole shelves!) and even parted with a small stack of my own (baby steps… I have a hard time letting go of books). Found homes for all the assorted “stuff” and organized my workspace.  I now have a combination library/office and the best part is I actually had the energy to work for two days straight instead of a few hours at a time and then having to recuperate on the couch.  At my last oncology visit I was told the chemo was all out of my system and I’m finally starting to feel like that is true.  Just a little post chemo weirdness though.. my eyebrows fell out again.. not all of them, but they became noticeably thinner and now have returned. My eyelashes completely fell out twice since returning.  I wasn’t aware that could happen but a little googling tells me it’s not that unusual and it will likely happen a few more times.  My fingernails never peeled or got terribly discolored though  that is a pretty common side effect of the chemo I was on. I kept them short and with layers of polish to keep them strong. Now, however, I have white lines in all of them and one thumb nail looks bruised.  All of the nails are peeling but from underneath. As long as I keep them polished they look fine.

I just realized tomorrow is the anniversary of when I discovered the lump that got me into this mess.  Maybe I’ll bake a cake. Or have a drink to celebrate.  Actually I probably should celebrate the fact that I found it.  Or not.  Most likely, not.  My doctors haven’t use the words “cured”,  “cancer free” or “NED” (no evidence of disease). I’m not sure when or if I will ever hear those words before the 5 year mark (countdown started after I finished treatment and began Tamoxifen.. so five years from September, 2012).  I have my first post diagnosis mammogram scheduled for November 12. Maybe I can get a little Ned out of them then.  I am prepared to be told there are changes from last year. I should hope so considering I’ve had surgery and radiation since then. Unfortunately that won’t make it any less scary to hear, I’m afraid.  And if the radiologist utters those words, regardless of what the changes are my doctors are obligated to follow up with more tests and then I get to wait on results again. I’m starting to get that I won’t feel free of this for many, many years, if ever.

I am flying for the first time since surgery this upcoming weekend. In preparation I visited the Lymphadema Clinic and was fitted for a sleeve and glove.  My doctors never said much about the need for this but I requested a referral. I was sent to P.T. where I was told compressing the arm if I’m not already having trouble would cause more harm than good (makes sense). Since I had heard that women who previously had no problems did when flying I asked if I could have a sleeve just to bring along as insurance and promised I wouldn’t wear it unless I needed to.  The physical therapist agreed and set me up with the Clinic.  At the Clinic I was told I HAD to wear the sleeve when flying because once I had problems they wouldn’t go away.  She then proceeded to explain all about lymphadema.  Who needs that!?   I have had no problems at all, but I only had one lymph node removed and I’ve been pretty diligent about exercising the arm and following as many precautions as I can.

 
In other news, I’ve finally narrowed down my tattoo to 3 choices.  As of this weekend it was 4 but I decided against f*ck cancer in a fancy script.  As I’m going to be a grandmother, that would be unseemly.   I know I’m a bit off schedule having insisted I would get one before I turned 50, but I couldn’t commit.   I’ll be in Austin next week. Where better?

These are the 3 top contenders.

The forget me nots in honor of my sister.

This means Survivor (too cliché?)

Care to vote?

Speaking of voting… robocalls are the devil.  We have one registered Republican, two Democrats and an Independent at this address and we all voted early since we will be away on November 6. These calls are driving me batshit crazy!

Just had to get that out.

I’m not even joking about the PTSD

Okay, maybe I am a little.  I don’t suffer from the kind of PTSD that has me diving under tables, self-medicating with drugs bought off of sleazy characters in back alleys or laying awake staring at the ceiling every night. Instead I have these little flashbacks of the past year that leave me feeling a little sick to my stomach or with a lump in my throat.  The next several months (ie. the entire holiday line up from now until July 4th) is one long anniversary of cancer.  I found the lump October 30. Happy Halloween.  I had surgery the week after Thanksgiving and started a 6+ month course of chemo two days after Christmas. New Years was spent sick and in pain from the first infusion. I started radiation the week before July 4 and that lasted the entire summer.  In every family photo celebrating holidays and birthdays I am either wearing a wig or a scarf.  Every celebration was wonderful, but I was exhausted or not feeling well through all of them.  Concerts, movies, even simple dinners out had to be planned so I could rest up a bit ahead of time and I always came this [] close to canceling, but never did.  I decided no matter how I was feeling to take the words “fake it til you make it” to heart.  99% of the time my attitude is positive, but then I have a precancerous polyp removed and a wonky pap smear and what would have previously elicited only a mild concern gives me pause.

Now I should just be putting this behind me and moving on (and I will!) but wouldn’t  you know the anniversary of my cancer diagnosis begins during the month of Pinktober, where everywhere I look there are constant reminders of breast cancer. I have an appointment at the Cancer Center tomorrow and I suspect it will be especially obnoxious. You literally cannot leave the house, pick up a newspaper or magazine, turn on the computer or television without being engulfed in a Pepto Bismol colored haze. It’s all good. Just in case, ya know, you’ve been living under a rock and haven’t heard of breast cancer. Now you know.

I’m not suggesting you don’t wear pink. You might look really good in pink! I’m not suggesting you don’t purchase pink items. I use a royal blue spatula myself and I’m not going to judge you if you want a pink one. My favorite present after my diagnosis is still the pink afghan my aunt crocheted for me that I wrapped myself in during chemo. But that blanket was made, given and received out of love. It wasn’t part of a marketing ploy to tug on heartstrings and loosen purse strings.  Be mindful of which companies actually support breast cancer charities when you purchase their pink items and which are only using breast cancer to fatten their bottom line.  Or, instead of licking pink yogurt tops (Really Yoplait?  You can’t just donate based on sales?) make a donation to the carefully researched charity of your choice. I support the American Cancer Society http://www.cancer.org  and recently have joined http://www.armyofwomen.org/ and signed up for a 20 year research study that anyone can take part in, men or women, any age, with or without a history of breast cancer https://www.healthofwomenstudy.org Check them out.

One more anniversary to mention. Today I am 

Look what I can do!

No going back now

I have been saying since my hair came in (first white, now a mix of gray, silver and black) that I was done with coloring. It is what it is. After nearly a year of harsh chemicals flooding my body, radiation and a five year commitment to Tamoxifen and all of it’s lovely accompanying side effects, I’m just not feeling the urge to slather smelly color on my head every 4-6 weeks. For that matter, I’m not going back to many of the products I’ve used in the past.  During radiation I started using Tom’s natural deodorant.  Once you get used to not smelling like a meadow at sunset or a tropical beach it’s not so bad. If it’s safe to use during radiation, I’m good. I am slowly cleaning out my environment as well as what goes into and on my body. Will it prevent a recurrence?  No idea. Did I get cancer because of my dying my hair and using deodorants with aluminum and parabens? No idea.  I’m even cutting back *gasp* on alcohol.  Okay.. that’s not that hard. I drank very little through the months of treatment and after an emotional week around my sister’s birthday when we had several evenings out, averaging about 2 drinks a day,  I really felt kind of sick by the end of the week. I don’t have to be hit over the head with a swizzle stick to know why. I’ve given up diet soda and my caffeine intake is pretty minimal.  My diet was pretty good otherwise, lots of fruits, vegetables, grains and protein but there is a lot of room for improvement (always).

Oh yeah.. back to my hair and the reason for this post.. the reason there is no turning back now is my license is due for renewal this week. Yeah.. I get to have my picture taken at the DMV while just getting my hair back after chemo.  That’s gonna be a whole lot of forehead.  DMV photos are so lovely to begin with. This should be good. I could renew on line but I haven’t looked like my last photo (2006) in a while and never will again. My hair is long and black. I was about 25 lbs heavier. Anyway, feel sorry for the clerk, I will have no shame in playing the cancer card to get her to take my picture over (and over if need be) if it’s as bad as I anticipate. Wish me the DMV luck.

Image

What I would tell my providers….

.. if I weren’t such a chickenshit  so unwilling to distract them from the very important work of saving lives. 

First of all, if you are part of a “team” caring for a patient, then please pass on all pertinent information regarding that patient’s care to the rest of the team so that she doesn’t have to repeat herself ad nauseum. In my case, as far as I know, my labs and test results were shared, but other things that certainly impacted my emotional well being, if not physical, were not. Or they were and having me repeat them was some kind of test of my mental/emotional status.   The latter is being generous and I’m guessing it’s more the former.

Please read my chart occasionally. Just before a visit would be awesome if you can fit it into your busy schedule.  If YOU sent me for testing you should be looking for those results.  If I have to ask if you’ve received them and you have to go rifling through the chart to see if you have, it makes me feel a) the test wasn’t all that important to my case, so why the hell did you send me for it (at the tune of $4,000.00 I might add)? or b) you’re just not all that interested.  I realize I am not your only patient. I am not your sickest patient. I have the “run of the mill” breast cancer that elicits a big ho hum in the world of cancer treatment, but for the 15 minutes I am in front of you I should damn well be your only patient.  And you should be as prepared for my visit as you expect me to be.

If you are leaving your practice, a mention to your patients would be really good form.  When I got my diagnosis I was assigned to a team of 3 doctors. Two of the three of you had been here for only one year.   Having lived in this area my entire life and worked in the medical field (first in the  hospital where I receive treatment and then as a medical transcriptionist) I am familiar with most of the doctors, at least by name and specialty.  It would have been comforting to be sent to a surgeon with a long standing practice, however I was very happy with you and you did a great job. No complaints.  Except. You’ve apparently left the area. This is after telling me that if I had any problems in the future I could forego the referral route and just make an appointment.  You told me my followup would likely be with Medical Oncology and there was no need to see you on a regular basis but I could (and probably should) check in yearly to remain active in the practice.   I only found out you had left when my Radiation Oncologist mentioned it.  In hindsight, when I had my port out you said “No need to come and show me the scar. You never have to see me again”.  Okay then.  While I make it a policy not to get emotionally attached to someone who tells me I have cancer, a quick note from your office manager would have been nice. If I do have further need for a breast surgeon I would hope I wouldn’t just be passed off to whoever happens to replace you.  No offense to the newbies, but in the future I want a surgeon who has been here longer than five minutes and plans to stick around.   Same goes for my oncologists.

And oh, the breast care navigators. You nurses are wonderful. You are available anytime  we need to talk.  You come and hold  our hands through difficult tests and procedures.  You run support groups.   I’m not someone who would normally avail myself of a service like this. It’s not that I am unappreciative. In fact, having my hand held during my second biopsy and sentinel node mapping, not to mention getting a phone call immediately after hanging up with the doctor (who delivered my diagnosis over the phone, btw, and only afterwards thought to ask if I were alone) to make sure I was okay was more helpful than I can express.  However, sitting me down less than 24 hours after I received the news I had breast cancer and going over such things as drainage bulbs, tattooed nipples, and the importance of knowing how to draw on eyebrows, complete with a demonstration of how alien like I would look without eyebrows by holding your two fingers over your own, was not only unnecessary (in my opinion), but unwelcome. I may have been looking at you intently and nodding appropriately, but in my head I was screaming “what the FUCK!”.  I can’t speak for other women, but at that point in time I only wanted to know if I was going to live.  Without knowing whether or not I would need a mastectomy (I didn’t) or chemotherapy (I did), much of that information was not pertinent to my case at all.  Once my course of treatment was decided would have been the more appropriate time to discuss the things that applied to me. I should mention the nurse who held my hand and spoke with me over the phone was not the same who sat down with me.  I have no idea if it would have been different speaking with her.  Two completely different personalities.  

I don’t want to make it seem like I am ungrateful for my care. I’m not.  I feel like I got the best care available to me.  My questions were answered and I tried to answer yours as truthfully as I could to aid in your care of me.  However,  I’m not someone who wears their heart on their sleeve or complains about physical discomfort. Outside of members of my immediate family, if anyone asks how I’m doing 9 times out of 10 I will say “fine!” no matter what is going on with me.  I don’t complain about things that I consider minor or things that you, my doctors, have told me to expect and how to deal with.  So, when I fill out those questionnaires at the start of each appointment and mention something like daily nosebleeds for 6 months straight, brain fog, exhaustion, etc..if you brush it off, I won’t mention it again. That doesn’t mean my course was “easy”. I know compared to many people it was easIER, but trust me, it wasn’t easy. Not by a long shot.