hair loss

Bits n Pieces

Posted on by mainelyhopeful

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.

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No going back now

Posted on by mainelyhopeful

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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Just for fun

Posted on by mainelyhopeful

I’m going to start keeping track of the more insensitive comments around my cancer care.  I know that sounds petty, but like I give a shit.

This week’s winner… I was asked to let a man go ahead of me for treatment on Thursday. Poor guy needed a full bladder for radiation and he did not time things very well. Of course I had no problem with it.  A nurse who does patient education (and whom I have never seen before) was waiting for him and decided to sit down and chat with me. She asked how I was doing and commented on my hair growth. Then she said “as far as we ( btw.. who is we?  are you speaking in the royal sense or is there is a mouse in your pocket?) are concerned you can dye it anytime”.  I felt a horrified giggle bubble up in my throat.  I have been on auto pilot for a few weeks now and as long as I stay in neutral I can keep my shit together.  I managed a weak smile and offered that I hadn’t decided yet and may just keep it as is.  She got this frozen smile on her face and sputtered something about how I could probably get away with that, after all I had a young face.  She must have missed a few classes on sensitivity. Not that I expect (or want) to be treated with kid gloves, but between the doctor who treated me like an inanimate object on Monday and now this I’m starting to wonder if this is commonplace. I have been so lucky in my interactions up until now that I was kind of unprepared. Or maybe now that I’m nearing the end of my cancer treatments my head is a little clearer and there have been assholes all along  but I just didn’t notice.

I’m not nominating the next one for anything because I can’t think of one funny or sarcastic thing to say and this is supposed to be for fun.  It actually left me kind of stunned.  I saw my medical oncologist for the first time since finishing up with chemotherapy.  I had (wrongly) assumed that my doctors all shared information about my treatment especially something like a major change in my family medical history. I missed a full week of radiation when my sister passed away.  Yet, apparently there was no mention of it so I had to tell the nurse when she asked brightly how my summer was going.  Believe me when I say it doesn’t get easier with each telling.  She passed on the info to my doctor who expressed her sympathy as soon as she entered the exam room.  After asking a few questions she said she had a patient who just lost a daughter and that was probably worse. I just said yeah, it’s been pretty hard on my parents. What I wanted to say is.. of course it’s worse for a mother to lose a child, but it’s also pretty fucking horrible for a child to lose his mother and a sister to lose her only sibling.  Not to mention for a man to lose the woman he loved who he hadn’t had nearly enough time with, three little boys to lose a loving presence in their life, and for their mother to lose a trusted confidant. But I just sat there.  Because I didn’t want to make her feel bad.

Honestly, the hospital really wants to stop sending me those questionnaires. I may start filling them out.

The Big C

Posted on by mainelyhopeful

Just finished season 2 last night. Anyone else watch?  I love the show, but it’s not terribly realistic.  For that matter neither is Breaking Bad, which is next on my list. Without giving away too many spoilers.. has anyone undergoing cancer treatment ended up socializing with their oncologist? Been told the only way to know if the chemo was working was by the severity of side effects?  Been asked to speak to a roomful of residents and told them all off? Attended their own funeral?  Run a 26 mile marathon after only 2 days of training while your blood counts are in the toilet?  Started manufacturing meth?  I feel like such a slacker and I’ve only got a little c.  I need to reexamine my life and do something really big. Or not.

On my own cancer front, I’m about halfway through radiation with only some slight pinking (pinkening?)  of the skin on my side.  I was told to put aloe on the “area of radiation”. I was not, however, told how large this area would be. That would have been good information to have from the beginning.  The area I have been treating all along is fine.  All in all, that’s my only complaint and it’s a minor one.  I missed a week of treatments and then the tech who I had been seeing daily was on vacation for a week. When she came to take me back on Monday she walked right past me and then returned a few moments  later for me. It took me a few minutes to realize she hadn’t seen me without a wig or wrap.  I’ve retired them for good.  And my eyebrows! They literally came in overnight. That was kind of weird. I have eyelashes again too. Little stubby ones, but nice and thick and full.  A return to normal, or at least a new normal.

I no longer want to know where the missing socks go.

Posted on by mainelyhopeful

I’ve moved on to a much more sinister mystery. Whenever I leave the house I am sporting two (nearly) matching eyebrows.

However, upon my return, more often than not, I have but one.  Where do all the eyebrows go?  Are they wandering around Central Maine lonely and scared?  Or getting into trouble?   I hope no one can trace them back to me.

Maybe I should have gone with a unibrow ?    

Today my glass is half full.

Posted on by mainelyhopeful

I am normally a half full kind of person, though I definitely do have my half empty days. Don’t we all!   Yesterday marked the halfway point of my chemotherapy. I have completed 8 of my scheduled 16 rounds, 4 AC and 4 out of 12 Taxol.  I remain very lucky and grateful. My side effects are minimal. No neuropathy or nausea, some aches and pains that are easily taken care of with light exercise and a hot bath.  I’ve had to take nothing stronger than the occasional Tylenol.  I’ve even managed to keep a cold at bay so as to stay on track with treatments.  And.. my hair has been coming in since a week before my last AC treatment! I fully expected to lose it again on the Taxol, but that hasn’t been the case. It initially was snow white and now has some color, but not the color I was hoping for. It’s definitely gray.  But it is hair. And it is my hair.  I’ll take it and learn to dye love it.

I find myself feeling a little guilty these days at my good fortune. So many people at the cancer center look like they are not faring nearly so well with the side effects. Of course I don’t know what kind of cancer or what stage they are in but still… I wish I could share some of my luck with them.  Yesterday while waiting to be called back after my labs were drawn I met Boomer, the center’s therapy dog.  What a cutie!  He approached each and every patient and brought smiles to all, even some that were looking pretty down trodden up until that moment. My husband and I got a good laugh at the thought of one of our hooligans being therapy dogs.  It would certainly make it interesting for the staff!

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Clover and Comet

I was catching up on my reading of the many blogs I follow before posting and one made mention of making lemonade out of lemons. My comment was that I always have preferred to open a bottle of vodka and drink until the lemons are gone but in light of my newly (forced) healthier lifestyle I will give that lemonade thing a try. We’ll see how that pans out.

All My Heirs.

Posted on by mainelyhopeful

A more apt title would be All My Heirs Hairs. That would be a great name for a soap, no?  We all know that many types of chemo cause hair loss. Some cause partial hair loss, some cause complete hair loss (as in everywhere). So, it’s not unexpected. It’s not even all that terrible once you allow yourself to accept it. It’s even kind of fun experimenting with different looks. I thought I would be sad when my eyebrows went, but there are enough of them hanging on that I can fill in with a pencil.  My eyelashes are thinning quite a bit too, but makeup helps.  All in all, the reality has not been as bad as the anticipation, and that has been pretty much the case in all aspects of this journey with cancer.  But some losses I just wasn’t prepared for. I wasn’t warned about it. I joked about it months ago, not thinking it would really happen, but it has and it’s terrible.  Really, really awful!

Of all the hairs I have loved and lost the ones I miss the most are my nose hairs.  Drip.. drip…

Seriously. Someone should have mentioned it.

Got some good wishes in the mail yesterday.

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ImageSomeone gave my name to this wonderful organization who sends a head wrap to any woman suffering hair loss due to a medical condition. The wrap, or “hug for my head”  I received is absolutely beautiful. I love it and will wear it often.  What was even better than the hat was the card signed by every member of the staff with a personal message to me.  It will be kept and cherished along with all the cards I’ve received from friends and family.  If you’ve never heard of them, here is the link. I would like to make the donation of a hug or two myself 🙂

http://www.goodwishesscarves.org/index.html

 

 

Look good, feel better? Not so much.

Posted on by mainelyhopeful

Today I went to the Cancer Center to participate in the Look Good, Feel Better program. First, let me start by praising the program and the volunteers.  The volunteers give freely and generously of their time and were so friendly and upbeat.  They gave skin care and make up demonstrations.  (Apparently I have been doing it wrong for 35 + years). They even cut and styled two wigs.  We all left with make up and skin care products worth well over $200.00, donated by top brands. So what’s the problem you ask?  I went into this feeling pretty good.  When I looked around my heart kind of sank. Many of the other women looked like.. well… cancer patients.  Maybe I’m delusional and I do, too, but I really don’t think so.  And then, as women do, everyone started chatting.  There were the usual pleasantries, but a lot of talk of diagnoses, treatment and prognosis.  Not much of it was very positive. One lady asked me how I dealt with depression and I answered honestly that I haven’t experienced any (yet?).  She looked kind of skeptical.   Before we left one woman asked if I attended the support groups at the center.  They are held one Wednesday evening a month and I had thought about maybe going in the spring.  I’m not fond of driving all that way in the winter, at night.  Now, I’m rethinking that. Maybe I’m the world’s most selfish breast cancer patient but if today was any indication of what those meetings would be like, I cannot see myself voluntarily sitting through them.  I just can’t surround myself with cancer and sadness, depression and anger.  I was told if I ever have blood drawn or go to the ER to be sure to identify myself as a cancer patient and I kind of bristled at that.  Yes. I have cancer. I also have green eyes, a tendency to migraines and an irreverent sense of humor. None of those things on their own define me.  I refuse to be defined by a temporary medical condition and I don’t want to be around people who define themselves that way.  On the other hand.. as soon as I started this blog, I immediately searched for other blogs about breast cancer, chemotherapy, women with cancer.. and I follow several.  Not all are cheerful every day, but all make me smile or comment. Most of the bloggers that I follow are hopeful and see the humor in the same things I do.  Some are very spiritual and I find comfort in reading their words.  Some are brutally honest about not so great medical results, but not one has ever left me feeling so dark and sad as that meeting today. I can’t explain it but then I’ve never claimed to make sense.

I don’t know what I expected to get out of today. It seemed kind of rude to turn down such a generous offer and I thought it might be fun. Some of it was, but I left carrying the little red makeup bag that identified me as a cancer patient in case anyone needed clarification, a headache and a lump in my throat. And my wig was choking me.

My wig is choking me!

Posted on by mainelyhopeful

Had breakfast with a friend today who I hadn’t seen since before my diagnosis.  We’ve spoken often, just not face to face.  I wore a new wig for the first time and omg.. I wanted to snatch it off my head the whole time. This is where I should mention that I have a perfectly lovely wig that was given to me free of charge through the American Cancer Society. It was fit when I had a full head of hair and I loved it so much that I went to the site of the maker of it and ordered a second one in a different, shorter style.  I have worn the free one twice and the new one one time.   Btw.. the American Cancer Society also sponsors the Look Good Feel Better workshop that I will be attending on Monday.  I will probably not be wearing a wig to that.

So anyway, my friend said the wig looked great. Very natural. So why did I feel like some animal had landed on my head and nested?  I visited with my mom for a while and the first thing I did was take it off. I reluctantly put it back on when I made a trip to the grocery store.    When I was cashing out a woman I have known for probably 25 years said “I love your hair!” *snort*  and came over to touch it (who does that?).    I just said “thank you” and wondered to myself what she would say if I blurted out it was a wig.  After I loaded up my bags I got in my car and immediately took it off and put on a soft cap I had with me.  It never occurred to me that someone might see me and I don’t really care if anyone did.  So why can’t I bring myself to leave the house without it, other than for medical appointments? Should I really care about other people’s discomfort if I look like a cancer patient?  Something to ponder.