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Second guesses

April 30th, 2012

It’s been 4 weeks since I left mom and came back to Toronto.

And 4 more weeks since her stem cell transplant.

She’s now 64 days post-transplant. I realize, in the grand scheme of recovery, she’s got 4 to 10 more months to go, for her system to fully rebuild, for her strength to fully return.

I call her every morning on my way to work, and every evening on the way home, and I’m good at being encouraging, of reminding her of the big picture. With mom, I find it easy to congratulate her on the small (but oh-so-big) victories. Yesterday, it was managing to keep down all of her food, all day, for the first time in ages.

And yet, privately… just between you and I… can I admit that I’m absolutely terrified I encouraged her into the wrong decision?

Neither of us understands why every day is getting harder, rather than easier. When I left St. Charles, she could walk for 20 or 30 minutes. Now? She can’t make it one lap around the indoor mall. When I left, she was getting down 1500 calories a day, and keeping them down. Now? She’s throwing up (mostly) daily, despite additional medications. She’s weak, shaky, and ‘walks like a drunk’ (to quote what she said this morning).

I called the doctors last week to find out if this was a normal thing at this point in her recovery. They could just tell me her blood counts look good, give her an additional anti-nausea medication, and put her on something to stimulate her appetite. And of course, reiterate that everyone’s recovery is unique.

All reassurance aside, I’m at the point where I’ve accepted that if mom’s not in a full remission next week when she gets those results, that I can’t ask her to go through any more chemo. And perhaps, undergoing a stem cell transplant at age 67, as healthy as she was going into it, was a bad idea.

What if she doesn’t fully recover? What if this is what the rest of her life will be for her? This treatment was so much more brutal than I’d imagined… and I’d prepared myself for all of the side effects and complications. I just wasn’t prepared to see her still struggling with basic tasks, so long post-transplant. And I wasn’t prepared to have to leave her in the care of good neighbors and friends, while she’s still so weak.

Don’t get me wrong. I fully realize that Mom’s decision to do the transplant was, in the end, her decision. But I do know that I encouraged her, and that most of her motivation was to have more time to spend with me. But can you blame me for second guessing that now?

When do things start to turn around?

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15 Responses to “Second guesses”

  1. Lee Says:

    🙁 Sadly I don’t know any answers – just sending you and your Mom warm thoughts and wishes.

  2. Marcy Says:

    I feel for you so much. I went through something similar with my husband. I’d wake at night and lie there staring at him, wondering if he would ever be himself again. But lo and behold, even though it took longer than I’d expected, he returned to good health with an even stronger appreciation of life. I hope this for you and your mom, and send you strength to hang in there.

  3. Laura from beautiful West Michigan Says:

    Oh, Amy, I’m so sorry for you and your mom and it’s so easy to second guess. It’s easy to say everyone reacts differently, but so hard to see a person you love struggling. You are a wonderful daughter. I know you feel bad for living far away and for not being able to be there, like my daughter who lives in Portland, OR, felt when I was going through my stem cell transplant. But know that we totally understand and support our daughters and we feel bad when you feel bad. Perhaps with the new meds for the nausea, she will be able to eat more and more and get her strength back again. Know you and your mom are in my thoughts and prayers.

  4. Terry Tice Says:

    You are a good and loving daughter. I am sure you wanted the best for your mother and encouraged her because of your love for her. That is a wonderful thing. None of us know the future, so, all of us must cherish those we love each and every day. You are doing that – keep up the good work!

  5. Sharon M2 Says:

    My husband had a stem cell transplant 10 years ago. The first months after were really tough. I would encourage him to take even short walks, and he would reply he just had no energy, and didn’t I understand that it was more than just being tired, etc. His appetite was also wonky, at least partly due to his altered sense of taste. At times, he would mostly eat only candy, or some other food that tasted good to him, and what tasted good would change with time. I don’t recall him having much trouble with vomiting after the transplant, but he did have trouble with peripheral neuropathy in his hands and feet (from the chemo), and sorry to say, continues to have trouble with foot pain when on his feet too long, as well as never totally recovering his leg strength, with some balance issues as well.

    You can never know what an outcome will be, so please do not try to second guess your decisions. And it is totally true that every person recovers differently; I see this everyday as a physical therapist. To be honest, it took a full year before Bob significantly recovered, and more than a year for everything to settle down. It is common for people to “back slide” when they leave the hospital because they don’t have all those people nagging them and monitoring every little thing. Continue to find the little victories that turn into larger ones. Best wishes to you and your mom.

  6. Bonnie Says:

    What an unenviable position to find yourself. We never know how things are going to work out. We make our decisions based on what we know at that time, not later when we have more or different information. You are and continue to be a good daughter. You are in our thoughts throughout this very difficult time.

  7. carolyn Says:

    This is so tough, girlie. Hang in there.

  8. Brigi Says:

    I am sorry! Hope your Mom will feel better soon!

  9. Linda Says:

    Try not to second guess, Amy–you just have to make the best choices you can at the time. It’s hard to become the caretaker of your parent & you’ve been fortunate to be able to be there to help her along. My mom had a brain aneurism about 15 months ago (at age 77). It took a long time, but she is back very close to normal now (amazingly). Even at her age she has incredible powers of recovery–I hope your mom will experience the same.

  10. Sara Says:

    I have no answers. Only sending hugs and a hopefully a reassurance. We daughters do the best we can. You made a well-informed decision to encourage her – and as you age, you’ll find that 67 gets younger and younger. The fact that you were there for her and love her speak more than anything else. The weather is getting warmer here this week. I hope that will help her feel better as well.

  11. Ninaclock145 Says:

    Thinking of you and your mom today. I was away from my mother when she was ill and it was very hard. I think us daughters feel a certain responsibility to be near in any sort of health crisis. And you were. And you are. Take care, Nina

  12. BeckyinVT Says:

    Hang in there, recovery from surgery takes a long time, recovery from chemo takes a longer time, recovery from a bone marrow transplant takes a longer time. Put one body through all three of those things at once? It’s havoc.

    Not that any of us can give any better answer than the doctors. But she’s going to have good stretches and bad stretches just like she has good days and bad days. My co-worker had a bone marrow transplant and was out of work for 2-3 months. And she was weak and having trouble keeping food down and gaining weight back for longer than that (her doctors just couldn’t keep her away from work anymore, because she’s that kind of dedicated)

    Hugs all around! If the doctors say her numbers are good than she’ll keep getting better, she’s just taking the scenic route to get there.

  13. AmeliesMama Says:

    Your Mamma doesn’t sound much like a lady who’d be easily encouraged into or out of decisions she didn’t fully want for herself. And I bet she’d kick your rear if she thought you were anxious about this! You are both strong and resourceful women, together. Sending your Mamma love and prayers, and to you also. Go gently x

  14. Emma Says:

    Amy – You love your mom – she knows it – and she loves you – and you know it! Continue to be there for each other. You both are in my prayers.

  15. Cindy Says:

    I haven’t gone through anything like what you’re dealing with, but I believe that we make decisions as best we can with what we know at the time. Yes, perhaps you and your mom might have made a different decision based on what you know now, but until we invent a crystal ball, that’s not going to happen. Try to treat yourself well and take care of yourself. My thoughts are with you.

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