The Hair Story

I have been meaning to write this for a while now. And I’m not sure why I even feel I need to write it. Maybe it’s because losing your hair is such an emblem of being a cancer patient. Or maybe it’s because my hair is a big part of me, literally, my hair is typically gigantic.

So, the prospect of losing it, was for me like for most cancer patients, something I was not looking forward to.

First, to prepare, the trying on of wigs:

I thought it might be fun to try to be a blonde, nope. Shorter wigs are easier to care for, but it just didn’t feel right and soon enough I would have very short hair! I went with the Raquel Welch “Showstopper”. Something about a Raquel Welch wig made me smile.

I learned an important and expensive lesson after I purchased my wig. Connecticut has a statute that requires insurance companies to cover up to $350 towards the purchase of a wig when your oncologist writes a prescription for a “cranial prosthesis”. My wig cost $478. When I submitted my claim it was denied. When I questioned the denial I was told that I had purchased my wig “out of network”. I had never even considered that there would be In network places to purchase a wig. Anyone going through this – read your insurance coverage carefully!

So, after my DCEP treatment, and before my stem cell transplant I was told my hair would likely start to fall out in about two weeks. So I waited. And then this happened.

And this is what it looked like:

The next day I eventually cut it short to my head and put on my wig to go to my stepdaughter Tess’ junior prom pictures. No one I saw even batted an eye.

I found sleeping on that short hair actually hurt. Somehow the short hairs are pushed against the grain of the way they normally lay and it HURTS, a lot. So on Mother’s Day my daughter Sarah came over and we shaved my head. Just like that. Wearing the wig took some getting used to, for instance in this Mother’s Day photo it is clearly falling too low on my forehead!

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I wore the wig to work every day. And everyone thought my hair looked so great! (Very few people at work, a handful really, knew I had cancer.) But wigs are uncomfortable, they itch, they tangle and they are hot, so at home it was often just my bare scalp.

And then there were the buffs and hats.

And everyone’s favorite the hat/hair!

Occasionally, I revealed my baldness in public.

But mostly I wore the wig, itchiness, tangles and all. At one point I even had to pay for a “haircut” for the wig! I needed to make it a touch shorter so it wouldn’t tangle so much on the bottom.

And then the growing out began.

Where it went from chic, to really not chic at all. My son Kyle was always the most brutally honest (not politically correct to share all the things he called me)!

At one point it was feeling oh-so-not-chic-at-all and in desperation I went for a haircut, where she thinned my hair in spots so it would lose some of it’s bushiness. It worked for a bit, although the growing out of the thinned layers was not so great – not sure I would recommend it.

And then there were the difficult times, which for the most part I found humorous (do excuse my mascara circled morning eyes in lots of these, morning hair was often the most “special”).

But one of my all-time favorites was when I sent a bad hair day photo to my nephew Hunter and he came back with the perfect response in seconds!

And I am still waiting for a great blowout…

In the meantime, some good hair days, some bad hair days…

But, really every day is a great day—and to be fair I’ll always have crazy hair!

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365 days past and leaping into the next 366

(I haven’t been blogging much lately for two reasons. One, there isn’t much to say; that is there isn’t much going on in my multiple myeloma world. Two, I’ve been very busy with everything else – a hectic fall photography season and the holidays. So two “good” reasons.)

So this past year has been, well, huge. Just a few days over a year ago I told my kids and my family and friends that I have multiple myeloma. A year ago on  January 5th I started treatment. I got the flu. I had a weekend hospitalization with a neutropenic fever. My daughter got married. I was hospitalized for 5 days for DCEP treatment. I bought a wig. I lost my hair. I had a stem cell transplant. My daughter got pregnant. I went back to work. My son got a dog. I had a busy fall season of photography shoots and editing. My hair started to grow back. I started maintenance therapy. And then the holidays.

The coming year is already chock full of things to look forward to:

  • Sarah’s baby shower
  • A trip to Naples, FL, staying with Dennis and Ruth Ellen and vising many others
  • The birth of my grandchild (sex currently unknown)
  • Graduation of two of Scot’s daughter’s (Maia (college) and Tess (high school)
  • A cousin’s daughter’s wedding in GA
  • Another week in the Hamptons
  • Our wedding (Scot and I)

And the ongoing maintenance therapy. And hopefully that is all on the myeloma front.

And of course the ongoing hair saga. More on that later.

As I wrap up this past year I want to thank everyone again for their love and support. You are my strength.

No more baby steps

Upon returning home from our week long vacation in the Hamptons I started to toy with the idea of starting to work from home earlier than I had originally anticipated. I am feeling better and better. The lingering symptoms are dry mouth, thirst and the biggest one, fatigue. The fatigue is somewhat difficult to track. I felt good on vacation, the trips down and back to the beach were completely manageable. Dining out every night was easy (ha!) as was strolling around town. I felt so good when I came home that on Monday I did what was close to my old full work out, the next day however, I was wiped out. So I am working on finding a balance. And although I am back to my regular 40 squats a day and take long walks without a problem, I wake up every morning with my legs feeling exhausted even though I have had a good night’s sleep.

We even went to a great wedding in NYC this past weekend. To prepare for it, I really took it easy the day before and the day of and I did fine. I danced and even stayed up until 11:00!

So. although I am heading up to bed these days at 8:00 p.m. I do feel ready to start back to work. At this point, I am only going to get fat and poor being home with no purpose. I have my first photography shoot this Friday (followed by one on Saturday and one on Sunday) and I will start working from home on Monday the 24th. In getting the doctor’s note required to start back to work I found out that I can return to working in the office on September 16th, which is earlier than I had thought (confusion on my part over which date we were counting from, transplant or discharge dates) and very good news. I miss my work peeps!

And of course, there is the hair update: it is growing. I’d have to say I am at the Sinead O’Connor stage. Here is a photo from the wedding prior to donning my wig.

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As I have felt better I started to wear the wig more (for the longest time I was just wearing buffs or nothing) and I did go and have it trimmed (only I could spend money at a salon when I have no hair!) and it is much more manageable now. But I am also going out now with “no hair”, meaning no artificial hair (I also have a baseball hat with hair that Scot calls my Sandra Bullock). I am now trying to figure out when I have enough hair to dye it to hide the greys.

So, I am moving along now at a fairly quick pace. I have an appointment on September 3rd at Dana Farber where I hope to learn what sort of consolidation therapy and maintenance therapy they are planning for me.

 

All sorts of things

Some of the little things, or the not so little things that make me feel better:

  • A friend checking in daily from her vacation in France
  • A co-worker telling me that seeing me go through this has changed his outlook on letting things “get to him” both at work and at home
  • A friend dropping off soup and flowers after I returned from the hospital
  • Texts from my nephew reassuring me of my beauty
  • Texts from  a dear old friend reminding me of the bonus of being hairless while riding in a convertible – so true!
  • Priceless stories from my oldest friend of herself and others fainting
  • Making people laugh retelling my fainting story
  • Having everyone at work tell me “how great (my) hair looks like this” – thank you Raquel Welch wigs and Progressions Hair Salon and Wig Boutique
  • Knowing my kids are supporting each other
  • My mother reading my large stem cell transplant binder while I cook her dinner and telling me that I can’t have salad or raw vegetables for a year, only to read it myself last night and see that it is only salad bars I can’t eat from for a year – the salad/raw vegetable limitation is only for a month – wait, is that a good thing – well, in the end it is, I am incredibly relieved and I’ve gotten a lot of laughs telling that story too
  • Waiting to leave the house with my buff on after a long day of wearing my wig (gets very itchy) and having Scot come downstairs looking like this:

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  • Reminders from those who have known me since I was born that I was bald until I was two years old
  • A former teammate and my cancer buddy reminding me that I am an athlete and that cancer is my competition right now
  • And all the love, emails, messages, texts, and comments on the blog from family and friends alike from near and far – you are all loved right back

P.S. Wearing that blouse and that buff, my kids and I determined that I looked exactly like Lucille Ball in the I Love Lucy episode where she is stomping the grapes (the blouse has poofy sleeves and I was also wearing a skirt) believe you me it was true!

Ruse

Saturday afternoon it was clear that my hair was more than thinning. So as soon as I had a moment, after doing prom make-up, I started hacking off my hair with scissors. Although I had been emotional on and off preceding that, once I started to do something about it I was fine.

I put on my wig and went to take prom pictures where I got lots of teen approval. Came home to Sarah, Demian and the two little ones who didn’t notice a thing different about me.

 Sunday morning I got up early to start preparing brunch for 25. It was a little hot and itchy in the wig. When almost everyone was gone Sarah buzzed my head with Demian’s trimmer – aaahhhh so much better!

Monday I got my pre stem cell transplant cleaning and evaluation done – North Branford Dentists – they were fabulous. I need a few things done, but they assured me they could do it in time, even if they had to work longer hours!

Then I went to work, the big test. By the end of the day I was practically embarrassed to be pulling off the ruse so easily; “your hair looks great straightened, did you do it yourself?”, “love your hair”, “looks great”, “loving it straight”, etcetera.

I am sure some people might be wondering. But thankfully no questions.

Overall it’s not bad, not bad at all.

Looking a lot less like Roseanne Roseannadanna

I thought I was past the point where my hair would start to fall out. Then on Friday morning I took my bun down for a minute and pulled my hand through my hair and found myself holding a lot more hair in my hand afterwards than I expected, a lot more.  A few more times of running my hand over the pony tail – same result. So, I knew my hair would at least be thinning.

Friday night at home I realized I hadn’t checked again. Bun down, fingers threw my hair, and pretty big sections of hair, not exactly sections but thicker than strands came out. And over and over again, basically every time I did it. I checked again before I went to bed, same thing. However, I have soooooo much hair it wasn’t really making a difference in how it looked.

I cried a little. Not scared or angry, just sort of saying goodbye to my hair. At half an inch a month it will take a very long time to get my hair to be long again, at least two years. During the day today my hair has gotten shorter and shorter (the long hairs seem to be in the lead in departing my head) and thinner and thinner. Before this day is out I am going to shave my head. I have my wig and now two buffs. So I am as prepared as I can be.

This also makes me feel more like a cancer patient. I am often told by nurses and doctors how good I look. And for the most part I feel really good too. But, this is the beginning of everything being quite a bit different. I will look different. When I have the stem cell transplant I likely won’t feel that well. And all the restrictions post-transplant will change just about everything I do.

F#ck cancer.

Weeds

Quick update: Friday’s blood work was completely uneventful in that a.) I did not faint and b.) I did not need any transfusions.  I am however, very neutropenic (low white blood count, very little immunity). I have also successfully purchased a wig. So if my hair falls out soon, or not until June, either way, I am ready.

Being neutropenic, as I am now, is not as restrictive as being post stem cell transplant. There are a few simple rules to follow: wash your hands a lot, stay away from sick people, stay out of the basement and the attic, and don’t move plants or do any gardening. The most difficult one for me right now is the plant/gardening one. Scot is gardening like a madman and I can basically supervise, but from a distance. It sounds silly, but I cannot tell you how hard it is for me to walk through my yard at this time of year and not grab a stray maple sapling or other weed out of the ground!

I did take a great hike in the woods and am grateful I will be able to do that (as long as I am feeling up to it) throughout this process. And I made a fabulous cold sesame noodle dish for lunch – have to contribute where I can!