On ice

i went to work on Friday. Had a lovely lunch with a fellow “cancer buddy”. Then around 3:30 I started to feel cold. And by 3:50 I had to leave. I shuffled along to my parking garage, drove home, went straight upstairs and into bed. 

I had the chills, started piling on the blankets and my temperature started rising: 99.8, 100.8, 101.7, 102.7.  I called my local oncologist and they wanted me to be admitted. Maia drove me to the hospital and Kirsten met me there. 

The staff at Smilow met their “gold standard” of care in this situation by getting my blood cultures drawn and IV antibiotics going in under an hour. My fever did go as high as 102.9 at which time they brought in the ice bags. 

By 9:00 my fever seemed to go down as fast as it went up. Kirsten could tell as I went from laying there not talking at all to talking more and more and more!

They have kept me here and weaned me from IV antibiotics to oral and tried to get my nausea under control. I should go home this morning. 

I won’t be going back into the office this week. Turns out Friday was my last day there. I’ll stop in on my way home today and grab my laptop, etc. and hopefully be up to working from home this week. 

As always it takes a village. Sarah and Demian took Minka to the vet for me Saturday morning (something that had to be done prior to my SCT). Sounds simple, but not with Minka! She is a bit of an anxious pup and HATES the vet. She got out of her collar outside the vet (which is on Main St. in East Haven). They scrambled to corral her and Demian heroically, quick-thinking, and fleet of foot stopped traffic on Main St. so Minka wouldn’t kill herself!

iPhones

I don’t know how people managed to get through cancer treatment without cell phones. 

Although I am kidding I am also grateful to be able to utilize this technology today as I start the stem cell transplant process with the mobilization chemotherapy at Dana Farber. 

This is essentially an all day affair starting with my 4 am alarm (on my iPhone) and hitting the road with Lisa, who slept over the night before. 

iPhone utilization this visit:

  • Lisa kept a list of the questions I wanted to remember to ask the SCT coordinators in her Notes for  me (we’re both in our 50’s and can’t remember sh!t). 
  • We used the Waze app to get here and more importantly navigate the horrendous Boston traffic. 
  • I ended up walking the last quarter mile (yes, the traffic was THAT bad) and was able to text Lisa where I was. 
  • Checking blood test results for labs that were taken an hour prior. 
  • I will be hooked up to this IV pole for 9 hours. But Lisa and her iPhone are my eyes to everything outside of this room. I’ve been able to browse the gift shop and peruse the cafe offerings all with photos from Lisa!
  • And then there is the entertainment portion, Drop7 (me), Farm Heroes Saga (Lisa), Facebook, Instagram, etc. helps to while away the hours. 
  • Also an excellent resource for argument solving; is it catmint or catnip? We were both right!
  • Lastly, but not least, the texts, emails and messages wishing me well today. 

I am ready for this next step and all it brings (both side effects and healing) but I have enjoyed these last few weeks being treatment free, just me. And to my credit (yes, I’m giving myself credit, oh the power of a blog!) I appreciated and acknowledged it daily. 

Addendum: I almost forgot – I used my iPhone to update my blog too!

    Dreams & Wishes

    Disclosure: This post is probably not what you thought it was going to be.

    Two things this week have tickled my funny bone.

    A few weeks ago I went to the ophthalmologist, and although my distance vision is not perfect, I don’t need glasses if I don’t want them. (I had them a few years ago and found them more annoying then anything else and then I dove into the ocean with the prescription sunglasses on and misplaced the regular pair visiting friends in Orlando.) A couple of nights ago, close to morning I had a dream that someone came to my door and rang the bell. It was a tall, young, fairly good looking man (why I include this fact, I’m not sure, but it’s true) with glasses standing on my front porch. He was an eye doctor, apparently he was tracking me down so I would get glasses. His name was Dr. Seagoode.

    Get it?  So apparently I am becoming Henny Youngman in my dreams! I dreamt the spelling and everything and then I woke up. I thought it was hysterical and laughed right away.  Still makes me laugh.  Dr. Seagoode…

    The other thing is that Scot has taken to randomly rubbing my bald head to make a wish. This too makes me laugh every time.

    He also thinks I should go out some time without any head covering, that I look beautiful. I did take my hat off today when we were sitting by the shore and on a dock, hoping to get some sun on my very white scalp. When we were on the dock there was a boat below us filled with people. And on the boat was a woman with a bald head (hers was evenly tanned, same as her face). A few minutes after I took off my hat I saw her frantically waving at my and smiling at me.  I waved and smiled back. Sisters in arms.

    A million details and yet in some ways simplifying

    Things are moving along full speed ahead for my stem cell transplant starting the end of this month.

    Last week I spent a full day at Dana Farber for tests and “training”. They had already sent me a 3 inch binder full of instructions and materials, a powerpoint, a calendar and the dental package. But it was very informative because they pared it all down and clarified some important items.

    First the tests: echo cardiogram, full skeletal survey (xrays, 18 of them), blood draw (19 vials!), pulmonary function test, EKG and my third bone marrow biopsy.  We were scheduled form 7:00 am until 5:00 pm.

    The  training session was with the two nurses who are the stem cell transplant coordinators and another one with a social worker. They gave us details about what each step of the process would be like.  As I write this I am realizing I really need to listen to the appointment again (I record most of my appointments on my cell phone – thanks for the tip Laura!). But here are a few of the takeaways:

    • Minka does not need to leave the house when I am discharged from the hospital (the binder said your dog cannot sleep on your bed, and Minka sleeps under the covers!). The nurses clarified that she needs to be groomed, have flea & tick treatment and no face-kissing and I can’t kiss her feet (how did they know I kiss her feet!?!?!).
    • I learned how the neupogen shots I will be giving myself (2 per day) work. They stimulate your bone marrow to produce stem cells. Taking the shots daily for 10 days in a row causes one to produce so many stem cells that they start to sptill out of your bone marrow into your blood stream where they can be collected, I also learned that those overfull bones can be a bit painful.
    • Something I am going to be on (here is where I need to listen to the appointment again!) increases migraines, so I have to make a visit to yet another physician and see my neurologists for some migraine meds  because my current drugs of choice, two tylenol and two advil (thanks Lynn!), will not be available to me as I cannot have any NSAIDS.
    • I was told that I would have to stop drinking alcohol two weeks before the mobilization chemotherapy, and then that that was that day!  One of the nurses gave me that evening to drink my last drink (It could be 4-7 months before I can imbibe again). And I did, well, I had my last few, a little bit of everything, finishing with a Herradura Tequila on the rocks with lime.

    herradura

    There is more, but now I’ll move on to the schedule. Although I had a copy of the schedule sent to me I could not fully absorb it without the details they gave me. here are the highlights:

    May 28: Full day of mobilization chemotherapy at Dana Farber. I will go home that night and plan in going to work the following day.
    June 2: The last day I can physically go to work. After that they do not want me to risk getting sick and my counts will be down. I plan to work from home June 3-5.
    June 8: Stem cell harvesting begins in the early morning hours at Dana Farber and will continue for anywhere from 2-5 days until they have harvested the 8 million stem cells they need (enough for two transplants, one for now and one in the bank). Harvesting is done outpatient, but are long boring days of being hooked up to machines. I will get to go home for at least a couple of nights afterwards.June 13: My inpatient stay at Brigham & Women’s starts.
    June 14: This is called Day -2, first day of the chemotherapy for the stem cell transplant.
    June15: Day -1, second day of chemotherapy.
    June 16: DAY 0, I get my stem cells back.

    And so on, until Day +14, June 30th, that is my “potential discharge date”.

    At home I will have 30 days of food restrictions and 90 days of house restrictions. More details on those to follow.

    But a quick touch on the simplifying. It is oddly freeing to not be able to make any plans, have no place to go, not need any new clothes, no trips to even consider planning.  Just treatment and healing for 4 months. I go through my inbox and delete all the sale emails, all the Groupons and Living Social deals (I won’t be able to go to restaurants), the Broadway Box offers, the Travelocity sales – delete, delete, delete.

    I am counting down the days left that I have to dress for work (7!).

    And I have download two different meditation apps to my phone – that I will have time for.

    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:

    IMG_4610

    • 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.

    My reputation preceeds me

    I have been feeling, well, I’ve been feeling like myself (yay!) since Monday. I’ve worked out every morning (modified a bit) this week (yay me!). And today when I went for my blood work all of the key blood component numbers are trending up and I am no longer neutropenic. So, while I still can’t shave my legs (low platelets), and I should maybe be feeling tired, which I’m not (low red blood cells), I can garden again and eat sushi if I so choose.

    I am feeling very excited by the news.  My body is recovering well from the treatment (or tolerating it well as the doctors like to say) even if I do not know yet how well the treatment worked, a couple weeks yet for that.

    I have taken to warning whichever nurse is drawing my blood that I did pass out last week, you know, just in case… The nurse today was shocked, she said, “I would never think that Heather would pass out!” – so there’s that!

    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!