M is for Myeloma is a place to chronicle my family's newest 'adventure' living with multiple myeloma to keep family and friends updated and also hopefully help others living with the disease.


Friday, July 8, 2011

It's great being home but it's hard having limits...

It's almost two weeks now that I've been home after the second transplant. The recovery continues but I feel like I'm doing well considering what my body just went through. Last week I tried to rest as much as possible by mostly staying in bed during the day and I needed it. I had pretty much the same issues I had after the first transplant...heart palpitations, trouble regulating my blood pressure, trouble staying hydrated, headaches, dry eyes, etc. In some ways it's been harder this time with the heat of summer. I have felt much worse going in and out between the sweltering heat and the air conditioning. Saturday evening I felt terrible after we went out to run some errands. I thought if we didn't take the kids with us I would be fine, but I still overdid it. I drank a ton once I started feeling bad thinking I was just dehydrated, but I think my body was having trouble regulating my core temperature. I felt freezing cold but had a slightly elevated body temperature. At first I was afraid I was getting sick, but my body temp came down after a couple of hours and I never had any other symptoms.

It's hard having limits!!!

I took it easier the next couple of days and we still managed to do some fun things with the kids for the holiday (including hitting the local fireworks display) so that was nice. This week, I'm overall feeling better than last week, but I'm still tired and don't have much stamina.
I was kind of surprised that all my hair fell out again, just after it started to grow in. I didn't lose more from the first transplant after losing about 80-90% after the induction course of chemo. This time it's more like 99% of the hair on my head. My bottom eyelashes are going again too, but so far my eyebrows are holding on. I hope they continue to hold on!

I am very thankful that I've tolerated the treatment so well. At first I almost felt guilty for doing so well through the transplants, while other patients struggled a little more. A friend responded to that thought by saying I shouldn't feel guilty because my experience coming through with minimal side effects gives other people hope. I thought that was a great perspective.

Now I think I need a bumper sticker or T-shirt that says "I survived two stem cell transplants". ;)

So now I'm just looking forward to getting this last long trip back to Little Rock over with so we can get back to our life. It's been hard putting everything on hold these past 6 months, and hard mostly losing our summer and not being able to take any vacations for FUN. In the end though it's these little faces that make it all worth it...


6 comments:

  1. Love their smiling faces! What's a summer vacation compared to a healthy mama??
    Love you sweetie, so glad I got to see you before I leave! You are doing amazing, and you look great. I'm so proud to call you my friend.

    ReplyDelete
  2. I think a bumper sticker or maybe custom T shirt for November could be in order!! Not everyone can say they survived 2 transplants… You're a rockstar!

    ReplyDelete
  3. They are the cutest kids ever and you are amazing!!! Bottom lashes are so overrated... ♥♥

    ReplyDelete
  4. Home again after visiting wife's kin in Hawaii but am glad to see you continue to mend. Get a lid to keep from toasting your mellon while your folicles recover! Don't need to add sunburn to your list of stressors! I did NOT need to see your kids eating ice cream after weighing in at the gym today... left here a passenger and returned as cargo. Keep up the good fight!! The Dekes.

    ReplyDelete
  5. I'm just finishing my first... Don't even want to consider what it would be like having a second SCT... You must be one, tough mother! Good luck- Pat

    ReplyDelete
  6. Those faces are SO worth it - glad you're taking it as easy as you can and mostly glad about those damn eyebrows. :) Keep it up, Jo... xoxo

    ReplyDelete