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.

Cups, Liters, Hours and Millions

The first day of the stem cell harvest started with the placement of the Hickman line under conscious sedation. Not too bad, I felt like I was aware of almost the whole thing and it felt like it took about 10 minutes, but it took an hour, so clearly some of the anesthesia “did it’s thing”.  

After a few minutes in recovery I walked to the Kraft Blood Donor Center, which is a funky little area of Brigham & Women’s Hospital. It is small and filled with New England Patriots memorabilia including  a wall papered with a shot of Gillette stadium. The space made my Boston-raised friend Alison very happy. It had a more relaxed atmosphere. the clinical receptionist making corny jokes and the nurses very cordial and occasionally very chatty. 

The process of apheresis is completely pain free. They simply hook you up to a machine from the two pronged central line, blood going out from one and coming back in the other. 

  
I asked how long the day’s process would take and was told it depends on your blood volume. They want to process your entire blood volume through the machine. Your blood volume is calculated based on height, weight and sex. Mine is calculated as 5 liters. Which takes about 5-7 hours. 

As I was laying there attached to the machine I asked how much of my blood was outside my body at any one time. The answer: about a cup and a half. 

  
At the end of the day the machine returns all of your blood remaining in it back to you. It’s all a little strange and a tiny bit gruesome, but not if you don’t think about it!

They weren’t able to complete my blood volume because we got a late start (Hickman line placement) and stopped at 4:00 after about five hours. They were encouraged about what they would collect based on my morning blood work showing a lot of stem cells floating around. And at 8:00 pm I got the call that they had collected 5.8 million of the 8 million stem cells they need. 

So we’ll get an early start today and hopefully be home Wednesday morning. 

The last two hours of the day yesterday consisted of lengthy discussions of food, restaurants and transit optiobs with the nurses. They were very excited to help us plan. Alison was pretty sure they wanted to come with us! 

So after finishing up In the blood center we walked to Brigham Circle, took the T and walked through Boston’s Public Garden. We had a lovely dinner at Toscano in Beacon Hill. It was good to walk after a day of laying around. And it was good to eat out as I countdown the last few days until my confinement. 

  

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

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!