Day +3

Not much to report today:

  • :I am more tired.
  • Nausea probably not as well managed today as yesterday, but no puking.
  • Kyle left this afternoon and Scot comes tomorrow morning.
  • I’ve lost 13 lbs.
  • I am a little worried about becoming deconditioned, as I am more and more fatigued and up to doing less and less. But I did get out  there and walk a bit this evening and got on the bike yesterday evening.
  • WBC (white blood count) down to 0.41, platelets and RBC lowered slightly but no need for any transfusions.

The photo is of the beautiful silk arrangement Jane brought me yesterday.

Day +2

Day +2 was marked by the changing of the guard, Lisa finished her 3 day tour of duty and left last night while Kyle was driving up. I’ll miss Lisa’s ever present smile and silliness. I was surprised when two of Kyle’s best “girl” friends, Jane and Toni, arrived with Kyle early this morning. It was great to see them both and Jane brought me a beautiful floral arrangement, she is a nurse and knew that it could not be live flowers. It was wonderful to have their energy in the room.

I worked hard and broke my streak, no puking! Nibbled some crackers when needed. The day is not over but getting through the morning was key.

The mighty melphalan is doing it’s thing, my white blood count dropped to 0.64. Which means two things, I can’t go to the shower in the hallway any more and I am more fatigued. It’s a weird feeling to be laying in bed and feel like lifting your phone up to look at it is an effort. But, generally speaking I feel pretty good. And I suppose a third thing – kicking the multiple myeloma’s butt!

And it was nice to have a napping partner this afternoon, we took a good 2 hours snooze after watching some Game of Thrones. To his credit, when he heard me move he jumped awake and said “Are you o,k,?” – he’ll make a good dad some day 🙂

Day +1

Well, here we are Day +1 end I am three-for-three for days puking since getting the melphalan, not the way I want to be batting a thousand.

Yesterday was sort of a lost day. I literally told nurses that things did not happen, that did, or that something that happened on Monday happened yesterday..in some respects forgetting some days here and there will make the time go by faster! But, today was actually a pretty good day. I only took one nap and I ate something for all three meals (well, dinner is on it’s way up). I walked but haven’t biked yet.

So according to the SCT coordinators the stem cells are like homing pigeons and are busy finding their way to my bone and marrow and you can think of it like reseeding your lawn. I failed to mention yesterday that when you get your stem cells back the preservative they use emits an odor – from your body. They actually put a fan in the doorway of the room to filter out the odor. I had read about this and had heard it smelled like garlic or creamed corn. The nurse yesterday and Lisa both think it smells like concentrated tomato soup (which happens to be what the stem cells looked like in the bag). I can’t smell it at all, but I am glad to know that as of an hour ago I no longer reek!

My appetite has been pretty non-existent. And I am starting to realize that hunger is very close in sensation to nausea, so that’s confusing. I’ve lost 7 lbs. so far, but wouldn’t recommend the diet to anyone (but, you know I am not displeased to be closer to my recent low!).

Day 0

Today I received some of my stem cells back (the rest are stored frozen for possible later use). It was pretty much a non-event. And I’d have to say that today I am pretty much a non-event myself!

I slept well last night with just one wake up for some nausea meds. But I was pretty nauseous upon waking for the day and ended up vomiting before anyone could get me anything, That said, they have added an additional anti-nausea medication to my arsenal, which is now up to 4, so it should be easier to manage going forward.  The rest of the day, I slept, and slept.

I am officially the worst person to visit in the hospital. Lisa has taken to sending selfies of herself with her mask on giving herself different occupations!

I did just get on the stationary bike for 12 minutes, so I’m not a complete waste of space. I am still kickin’.

Day -1

So some nausea reared its ugly head last night. A combination of meds finally let me sleep around 11. But at 4 a.m. I was up and had a migraine. Took a while to get a migraine medicine ordered and up here from the pharmacy, so it was a pretty unpleasant morning.

I got the second/last treatment of melphalan this morning, chewed my ice and then took some ativan for nausea and slept for two hours. When I woke up I was a new woman. Still not much of an appetite and working on the combination of meds to keep the nausea in check, but doing much better. I got some walking and some squats in, not a ton of either, but it’s something.

Thanks for all your comments and well wishes.

I hope to report something every day. Perhaps not witty or eloquent, and maybe even not from me, but the plan is for every day while I’m in here,

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.

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.