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. 

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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!  

Just a quick post from sunny Texas!

Here on vacation with the boy and his missus who are awesome hosts as always.   The weather has been gorgeous! I was worried that my chemopause would make the heat unbearable but that hasn’t been the case.  It was only really hot one day and by evening was beautiful.  Apparently there is a Nor’Easter brewing at home. So sorry to be missing it.

I dutifully wore the compression sleeve while flying and had no problems at all. Maybe I wouldn’t have anyway, but why risk it? I’ll wear it on the flight home as well.

I am now able to cross one more thing off my bucket list. I got my tattoo on 6th Street in Austin on Monday.  I used a very scientific method to choose the parlor/artist. I picked the building with the friendliest looking storefront.  It was amazingly clean and bright.  I’m not sure what I expected but I felt like the whole process was more sterile than my medical treatment at times. The artist, David, was covered in tattoos and piercings (of course) as was the rest of the staff.  He was great, explaining every step, offering to stop if it hurt too much, and fast!  He sent me off with better skin care instructions than my radiation oncologist. Go figure! Just goes to show you should never judge someone by their choice of body art.  If you are ever in the Austin area, looking to get some ink (doesn’t that sound badass?) visit Affinity Tattoo and ask for David.  He won’t even question the fact that you are a 50 year old conservatively dressed woman with her husband and son along for support getting your first tat. No judgment.

p.s. it really didn’t hurt. It didn’t feel good, mind you, but I wouldn’t call it painful.  Maybe biopsies and endless needle sticks have desensitized me to pain or maybe I was just too excited to be getting the tattoo but it wasn’t bad at all!

As for the rest of the bucket list.. I’m working on it and while my bucket list isn’t all that long, my fuckit list grows daily.

Check out the chemo curls!  Still not long enough in the front to cut and style, but it’s getting there!

I went with the forget-me-nots. The skin looks angry and red, but that didn’t last long at all and it looks great now! Didn’t he do a great job?

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.

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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.

A certain glow

Two full weeks out from my final radiation treatment, I feel well. Still kind of tired at times. Lately I am in bed between 9 and 10 pm, where I have a standing date with Barnabus Collins via my little Kindle Fire (I still have not read one book on it and my pile(s) of hard covers continues to grow).  I usually last through one or two episodes, then it’s lights out.   I wake up feeling refreshed, no aches and pains until mid afternoon when I start to walk like I’m 90 years old.  A cat nap fixes me right up.  All in all, no complaints.

Yesterday we had a celebratory lunch at a restaurant owned by a close  family friend.  She and her daughter told me how good I looked. That I glowed.  My response was “that’s the radiation!”. Later that evening I was blaming my “glow” on hot flashes. I imagine it’s a combination of the two.  Or it could be that my new feeling of wellness actually does show on my face. In any event, it was nice to hear. Even if family and friends are contractually obligated to tell you how great you look at the end of cancer treatments.

I have been losing time again. As in I have to look at a calendar several times a week to remember the day of the week, date, etc.   I don’t think it’s remnants of chemo brain so much as time this past year, particularly the last two months, has ceased to exist in any meaningful way other than how many more months, weeks, days to the end of treatment and how many days, weeks, and now months, it has been since my sister passed away.  I’m trying really hard not to focus on how many years (!)  until I can truly say I beat this and be certain.