Boys In Red Pickup Trucks

Alison picked me up Sunday at 5 pm to head to her aunt and uncle’s house in Milton where we will be staying while my stem cells are harvested this week. 

We were driving along I-95 North, eating Fritos (best road trip food – and as I just learned yesterday, a pure food, just 3 ingredients: corn, oil and salt, lots of salt – who knew!?!) and chatting away. And I get one of my many hot flashes (oh to have cancer and be peri menopausal – good times)., so I take off my buff and whine a little about how hot I am and we keep on driving. 

A while later we’re in the left lane and I notice that a red pickup is next to us on the right, a young male driver, late twenties probably, dark hair, and he’s asking me to roll down my window. And I think “Crap, there must be something wrong with the car.” And then he yells to me, with a smile and a big ‘thumbs up’, “I’m a survivor! Bless you!”, and he drives off with his kayak in the bed of his truck. 

Alison and I both cried. 

I am held up by so much love and support, and it comes from so many places and in so many different forms. 

This week alone:

  • Cards of love and encouragement in the mail
  • A fun game from my aunt and uncle arrived, something for fun while I recuperate
  • A “Dr. Bernie Siegel gift bag” from friends at work with one of his books, an audio CD and. DVD and a beautiful card
  • A thumb drive filled with comedy routines from my brother
  • This YouTube video from a friend that really hit home http://youtu.be/ISET9kt5wfE
  • Tom Brokaw’s new book
  • Scot indulging my every food out whim I have as I get closer to my confinement
  • Alison’s aunt and uncle putting us up for what could be anywhere from 2-4 nights
  • And of course the calls, texts and loving offers to do something, anything for me (I am sure I will eventually take everyone up on all of the offers!!)

Sleep has been a little tougher to get these last few days. I looked up and blamed it on the first light being at 4 am and all the birds around our house. But this morning I beat that, up since 3:40 am. Well, I had to get up at 5:00 anyway to be at Dana Farber for the double lumen Hickman line placement at 6:30. And then it’s a full day of apheresis at the Kraft Blood Center in the Jimmy Fund Building. 

I’ll have plenty of time to nap. 

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!

    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!

    Attitude and Support

    Attitude and support, support and attitude – they go hand in hand. I am fortunate to have a wide and deep variety of support. I have my family – parents, my kids, siblings, aunts, uncles, cousins, and my husband’s family. I have friends who are like family who I have known my entire or life or 37, 34, 0r 25 years. My book club peeps, my work friends, Trumbull friends, my kids’ friends, basketball friends, friends who are cancer survivors, friends who  are getting cancer treatment, and my Facebook friends. And there is my boyfriend who supports me in so many ways, literally nourishing me, body, heart and soul.

    I have been listening to a guided imagery from Health Journeys and a section of it goes like this:

    “as the expanding circle of light approaches you with its generous energy, and gently surrounds you, you become aware of a warm presence surrounding you. And looking around in this remarkable light you can see that you are encircled by gentle loving beings, immediately recognizable as allies, loving friends with special gifts and powerful abilities, a whole circle of smiling well-wishers in the bright humming light….all gathered around you, warming you with their protective presence, nodding and smiling.”

    I have absolutely no problem, seeing this, feeling this and seeing all the faces, feeling the love and support, because I live it every day.

    This week I have received it in spades. Lisa drove me to Boston and stayed overnight to visit the second day, Alison came for a 6 hour visit today, Scot came up and surprised me for a quick 2 hour visit (plus the 2 1/4 hour ride up and back), Sarah comes on Saturday and will stay with a friend to visit on Sunday too.  And then Scot comes back to pick me up on Sunday. I have received loads of emails, texts and phone calls. My nephew Hunter sent me a youtube playlist of videos to cheer me up. Everyone keeps asking if I am bored – I actually don’t have time to be bored!

    This support allows me to maintain a very upbeat attitude. The staff here has been regaled with peals of laughter from my room, me with a friend, me alone with a silly video from my sister.  I’ve been trying to maintain some fitness walking laps in the hallway, or like today dancing laps in the hallway with my headphones on.

    I had a ton of delays before they finally got the treatment started at 5:00 p.m. yesterday, more than a full day after I was admitted, But I really didn’t get too aggravated. I try to be understanding while staying on top of what I need,  My attitude is appreciated by the staff, who have really been terrific here. It is service like you would expect in a fine hotel.  Every time anyone comes to my room it’s, “Do you need anything?” or “Is there anything I can do for you?”

    The love and support from friends and family on top of the confidence I have in my doctor and care team here leaves me generally feeling calm, secure and peaceful.

    Don’t get me wrong, I have my moments, I worry about the future, I have mourned the impending loss of my hair (just trying to come up with a solution now) and stress sometimes over all the self-management of my care that is required.

    Because, you know, it’s always something…

    Today it was chemotherapy and an ever-growing list of other meds (including finding an anti-nausea med that is working), laughing at cat videos, delivery of my bubbly water and a stack of magazines, dancing in the hallways, surprise visits, a completed crossword puzzle or two, godiva chocolate and love from everywhere.  I’ll take it.

    Now if I can just figure out how to get some sleep between the dexamethasone and all the necessary overnight visits from the staff!

    Next

    So, the new regimen also did not exactly do it’s job, so Dr. Munshi at Dana Farber has prescribed a different treatment, CDEP, Dexamethasone, Cyclophosphamide, Etoposide, Platinum (Cisplatin). The four drugs are given in combination over four days, dexamathesaone in a pill and the other 3 via a slow, constant infusion as an inpatient. I am going to Boston late morning tomorrow and will be admitted to Brigham and Women’s (across the street from Dana Farber, where they do all of their inpatient treatment).I should be discharged on Saturday. My understanding is that I will mostly be bored (maybe I’ll blog!). The following week I may not feel great as my blood counts will likely be very low. I will be watched by my doctor here at Smilow and may need transfusions and/or the support of neulasta (again).
    And the following week, I may lose my hair – eek. There will at least be thinning – which I can well afford, as long as it isn’t in a big clump right on my forehead!  But, I am mentally preparing to lose it all. And even if not from this treatment then certainly from the stem cell transplant that this treatment is preparing me for, which will likely be in about 8 weeks or so.
    Aside from total vanity, losing my hair means that the world will know I have cancer.  Although it is not a secret, I am not “out” at work, nor on Facebook. I just don’t want any pity parties!
    The other problem with losing my hair is covering my head, my huge, gigantic head. I did some rough measuring and from my calculations I am just on the outside of the largest size in women’s wigs. I already know my head is too big for women’s hats. So, it shall be interesting…
    The best suggestion so far came from my friend Michael, and I quote,”more cleavage”  Yes, there is always that. It reminds me of that old W.C. Fields quote that Ken use to repeat (often),

    “If you can’t dazzle them with brilliance, baffle them with bullshit.”

    or cleavage, same thing…

    Cycle #4

    IMG_1436
    Lily pads at the Victoria Falls Hotel, Zimbabwe

    I started my 4th cycle of revimid/velcae/dexamethasone this morning. My doctor at Smilow would like to see me making quicker progress and would like to add a 4th drug. My doctor at Dana Farber is pleased with my progress and does not want to make any changes at this point. When I spoke to the APRN at Dana Farber late last week she actually said that sometimes with a very quick response there is also a faster relapse, that sometimes a slower, steady response is better. “Sort of like when you lose weight too fast and then gain it all back”, she said. I am happy with Dana Farber’s plan. I have virtually complete trust in them, they are the experts, this is all that they do.

    My mom accompanied me to my appointment this morning (for the first time). We had a very long wait in the exam room after seeing the fellow, waiting for the doctor. I finally said to her “You know Mom, if you want to have cancer you need to be more patient than this!”

    I did have the flu (influenza A) for about two weeks. So there’s another good thing about cancer, if I had the flu and did not have cancer, I probably would have never known I had the flu, I would have not gotten the rest I needed and I would have just kept pushing myself and wondering why the heck I couldn’t get over this terrible cold – so there’s that.

    Now I have two weeks of treatment and then the off week leading up to my daughter’s wedding, which is perfect.  Lots to do, exciting stuff, can’t wait to see my baby girl get married and visit with family and friends from near and far.

    Sharing

    People always say that you never know how you will react until it happens to you.  And I can tell you that that couldn’t be more true. When I was going through the testing leading up to the diagnosis I only told my boyfriend Scot, and two close friends. Much like with the thyroid issue, I just didn’t want to needlessly worry my loved ones. My husband had only been gone 2 and a half years, it all seemed too close.  But then when I did find out I had cancer I simply could not tell my kids, I shard with my sister, but not my brother nor my mother and father.

    I was diagnosed with smoldering multiple myeloma, one step above MGUS and one step below active multiple myeloma.  I would not need treatment until my disease became active.  So, I decided that I would not tell my children or the rest of my family until I had to be treated.  If anyone had ever asked me, “If you found out you had cancer what would you do?” – keeping it a secret would not have been my answer.  And yet I did.  My daughter was newly engaged.  My goal was to hopefully keep it a secret until after the wedding.

    For the most part keeping the secret was easy.  Telling people you have cancer, an incurable cancer, really isn’t something you look forward to. I did share it with a few other friends.  Always making sure it wasn’t someone that somehow it would get back to my kids. Someone told me that when you someone says they won’t tell anyone, they tell only two people.  And you know, I think that’s probably true.IMG_9304b

    I decided to get my care at Dana Farber in Boston, it was between Dana Farber and Memorial Sloan Kettering in NYC – my sister wisely suggested that maybe we should just try a change of scenery (my husband was treated at Sloan).  I feel that I am getting world class treatment there.  My clinician, Dr. Munshi is smart, thoughtful and kind-hearted – smart being the most important factor for me.

    In November there were some changes in how of active multiple myeloma (MM) was defined.  And I saw that I met some of the criteria.  Dr. Munshi scheduled a bone marrow biopsy.  I was anemic. And at my December 11th appointment he told me that it was time we started to treat my MM.  He eased into it, in the gentlest way.  And when I cried he reminded me that when I first came to him I was anxious to do something, to get some treatment (there was a promising clinical trial of a vaccine, but I was missing the antigen required). My sister and I laughed later in the car yelling “Fuck him for reminding us of what we wanted!!”

    So there we were, December 11th, he wanted me to start treatment right after New Year’s (or sooner).  I had to tell my kids.  December 18th was the anniversary of their father’s death. We had fun family holiday events planned that I didn’t want to ruin with my “news”.  I wanted to tell the two of them together, in person.  I kept throwing dates around, trying to figure it out, how to get them together without raising their suspicions, but tell them together.  It came down to Sunday, December 28th.  We were going to NYC to see my stepson and his family.  I decided I would tell them on the way home.  And then my son “blew us off” and didn’t come. I figured we would stop on our way back at his place and I would tell them then.  My daughter told me that she and her fiance would be driving separately. So I finally decided I would tell her before we went our separate ways in the city and then I would stop on my way back and tell my son. Not ideal.  And I hemmed and hawed the whole time, do I, don’t I.  My heart was racing, I was having terrible anxiety.  I was a mess.  I ended up telling my daughter standing on a street corner in NYC.  Which is oddly private, probably more private than sitting in a restaurant. It was noisy, no one cared what we were doing, that we were crying. It was one of the hardest things I have ever had to do.

    And then I call my son to tell him I am going to stop by.  He isn’t home, out with a friend, “why what do you want to talk about?” – so I tell him over the phone.  Best laid plans…

    My sister was tasked with telling my mother, father and brother – she is my hero.

    My sister-in-law told my husband’s family. And I believe the word has spread, a bit.

    But this brings me to here, this blog.  When my husband was sick I created a CaringBridge page for him.  He knew so many people, had so many friends, it was truly onerous to think about keeping everyone informed as to his status.  There were always people who wanted to talk to and tell himself after an appointment, but the site became a way for everyone else to know and reach out to him.

    I couldn’t bring myself to make my own CaringBridge page. This seems less morbid, even thought it may serve the same purpose.

    Did I ever think I wold have a blog? No. Did I think I would be diagnosed with cancer at age 52, no. But here I am, and well, here I am.