Day -2

All settled into the room. I ended up in one of the three rooms here without a shower. This means I have to put a mask and gloves on (which I have to do whenever I leave my room) and actually leave the unit and walk into a public hallway to get to a shower. I was warned that this might happen and was advised to request a room change, which I did. I am number three on the list for the three rooms. It’s not so bad for right now, but will get old over time.

The staff here is great. I feel very well cared for. This floor is exclusively for stem cell/bone marrow transplant patients. It’s all they do here and it shows. My overnight nurse told me her other patient flew here to get treatment from Dubai!

The food is almost comical starting with the photo above. That is last night’s dinner, Chili con Carne with cornbread, both very tasty. But I took the photo, adding the tiny packet of butter for perspective. It was the tiniest serving of cornbread I have ever seen! I had requested butter as a condiment and they sent three packets – there was literally more butter than cornbread!

I also ordered a banana, knowing that when I go home I can have thick skinned fruits, but the answer was no. Watermelon? No. Cantaloupe? No. So canned peaches it was.

For breakfast, I asked for Raisin Bran, no, no dried fruit (I forgot). So I went with Cream of Rice. Brown sugar? No. (I have no idea why.)

Lunch, turkey breast and provolone on a whole wheat wrap? No cold cuts. Ok, tuna and provolone? No to the cheese (I think maybe because it is sliced like a cold cut?). Ok, just tuna. And so it goes. Their mashed sweet potatoes and their butternut squash are both good and decent portions. I think I’ll end up looking slightly orange by the time I get home like a baby who only likes the mashed carrots and sweet potato baby foods!

I received my first dose of melphalan. I had to suck on ice for two hours and 15 minutes in order to avoid mouth sores. It’s amazing what you can do when properly motivated! Upside to that was no hot flashes during the ice sucking or for several hours afterwards (bonus!). They gave me prophylactic anti-nausea meds and so far so good there as well.

I walked in the unit twice for twenty minutes and they put in an order for a stationary bike for the room, waiting on PT for that.

Going In

I leave for Boston in a few hours, my room is already there for me. No waiting, you know, except for all the rest of the waiting 🙂

So I’m going in, not quite as dramatic as jumping off of the Victoria Falls Bridge (see photo above of me, Summer 2012).

I’m ready. I’ve eaten my way through the past few days, all things I won’t be able to have for the next 50 days (or more) and things I think I might miss (or just felt like having).  This has included:

  • 2 lbs of fresh raspberries
  • McDonald’s cheeseburger and fries
  • Fresh figs
  • Blueberries
  • Doughnuts
  • Salads, lots of salads, middle eastern salads, shaved brussel sprouts over a risotto cake, arugula and beets, etc.
  • Dr. Mike’s hot fudge sundae

My clothes and entertainment items are packed in plastic bags (requirement). No toiletries, jewelry or wallets allowed.

And I won’t be outside for 18 days. Weird.

Here’s hoping I’m bored. As Dr. Munshi said when he first talked to me about this process, “I like my patients bored, that means they are feeling well.”

Made of “Good Stuff”

Last week I had an appointment with my neurologist, because you know, I don’t go to enough doctor’s appointments!  Actually, I had to go because the stem cell harvesting process gives some people migraines, which I do get. Typically I handle my migraines with a combination of tylenol and advil. However I am currently not allowed to take advil, so off to the neurologist I went to get a prescription for migraine medicine, just in case. (Turns out I did not need it, I got a few headaches but no migraines.)

I have sen my neurologist on and off for over 25 years, she comes highly recommended from a doctor friend of mine, is Ivy League trained and I have always found her thorough and a very good clinician.  She is a little but, I don’t know, eccentric.

I had not seen her since being diagnosed with multiple myeloma, but she is the one who discovered my olfactory cortex meningioma (see Incidental Findings). So after a long review of my past and more recent medical history, a physical examination, etc. (everything neurologically is fine!). She sits across her desk and looks at me and says, “You know, you look really good.” I reply, “I know, everyone says that – nurses, medical assistants, doctors, specialists, attendings in the hospital, everyone.” She says, “I don’t think you know what they mean. Some people are made of bad stuff and they get sick and they look bad, but you’re sick and you look really good, you’re made of good stuff. I think you’ll be o.k.”

So after a not very technical evaluation, I guess that’s a good thing, I just might be made of good stuff, even though I have bad stuff going on.

My good stuff best be there for me as I approach the coming weeks. I have learned something recently, mostly talking to nurses (nurses are da’ bomb, by the way, so full of great information). The “stem cell transplant” is not actually the treatment for the cancer.  The treatment, to get rid of the cancer cells in my blood is the two days of high dose melphalan. This will “kill” both the bad cells in my blood as well as the good cells, hence the need for the stem cells. The stem cell portion of the treatment is actually called “peripheral stem cell rescue”. The stem cells come in to save the day and get your blood counts back into a normal range.

There are other side effects besides the low blood counts: nausea, vomiting (maybe for longer than the hospital stay), diarrhea, mucositis (sores along the digestive tract), heartburn espohagitis, risk of infection and fever.

This is the schedule:

Saturday, June 13th (afternoon or early evening: Admission to Brigham & Women’s Hospital
Sunday, June 14th (Day -2): First melphalan dose
Monday, June 15th (Day -1): Second melphalan dose
Tuesday, June 16th (Day 0): Stem cells reinfused

And then recovery in the hospital Days +1 through +14.

Days +6 through +10 are likely the days I will feel the worst.

Day +5 neupogen injections start and about a week later my white blood cell counts will start to climb as my stem cells mature.

Day +14 is my potential discharge date (June 30th). And then it is home where “the bulk of my recovery will take place” with diet restrictions for 30 days after discharge and infection control restrictions for 90 days after discharge.

Everyone’s side effects and recovery are different.

Here is to my “good stuff” doing it’s thing!

10 Million Stem Cells

I ended up with a grand total of slightly more than 10 million stem cells collected.

They have sent me home where I’ll rest up for the upcoming treatment (I get admitted this Saturday).  The additional specific instructions are “to eat all the salad, raw fruits & vegetables and raw fish I can!” It will be almost two months before I can have those again and one year for the raw fish.

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. 

Short

Ken used to use a fair amount of army vernacular, partially from the year he spent in Germany teaching on a military base, but I think mostly from his dad. Some of these terms have stuck with me and I still use them. So we come to “short”, typically I am not short, not in stature and I try not to be financially, but right now I am “short” in the military sense, or really in reverse of the military sense. Soldiers who are “short” are almost at the end of their tour of duty. I, on the other hand, am short and feel like I am going into the military, or perhaps prison.

And no, it is not that bad, nor that long, neither my hospital stay nor my limitations when I get discharged. But I am feeling like scrambling to do the last few things I can do now that I won’t be able to do later like eating now what I will have to avoid soon.

I am feeling much better than when I was feverish last weekend, but feeling the effects of last week’s chemotherapy – very tired and some occasional nausea. It took me three days to have both the energy and the appetite to go to Ashley’s for ice cream – oh the trials and tribulations! 🙂

I have just two more days of working (from home). One more photo shoot to edit. Dinner out with my kids. And I’m trying to use as many of our fresh herbs as I can when we cook!

At any rate, I’m counting down, but I’m still kickin’!

stillkickin

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!

    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!