Saturday, August 21, 2010

On transplant recovery and kicking people in the throat.

Phil and I were talking the other day about how easy it is to fall behind in blogging because so much happens that there's no possible way to catch up. But I will try.

Phil is still making slow progress. If he was anyone else he'd be sleeping 20 hours a day, but he's one tough cookie so instead he's playing with the kids and helping friends and trying to get back to regular life. And all with a smile on his face, bless his heart. Just recently he came to the conclusion that this treatment process has been really hard on him physically (which I was anticipating and trying to make allowances for all along, but I won't say I told you so).

I mentioned it in my last post but it bears repeating... Phil's body went through a lot. Twice. And it's going to be months and possibly years before he's back to where he was before all of this. As much as I'd like to compare it to childbirth recovery, it's much harder, though Phil makes it look easy and never complains, unlike me. Three times. If you're going through transplant, give yourself time to recover. And if you have a loved one going through it, by all means... don't treat the patient like an invalid but do be compassionate. We've appreciated the sensitivity we ourselves have been shown by so many as our little family has been recovering from this trauma.

As for me, I'm beginning to see the light at the end of the tunnel. From the moment we knew Phil had cancer, we were flooded with so much practical help from our closest friends and family. I will never forget those first few days, not only because of the complete shock we were in, but also because of the insane amount of love that we received. My little posse kept my family fed, my house clean and my head above water. I could never have survived without them. Now all of that help has allowed me to get to the place where I'm ready to stand up, dust myself off and take some unassisted steps toward autonomy. Just to put this in perspective, Phil has been sick since Ocean, who is now four-and-a-half, was five months old. We were only married for a year and a half before Phil's first blood clot, a pulmonary embolism. And that's just the tip of the iceberg. After all, this is just the myeloma blog. It's not the miscarriage blog or the getting fired blog or the moving five times blog or the losing loved ones blog. That's a lot of life crammed into a few short years.

Now, finally, I'm ready to be normal for once, realizing that our normal will include regular visits to the cancer center forever. But it also includes making dinner, scheduling activities and classes for the kids and taking vacations (something we have never done on our own as a family). I haven't mastered the laundry abyss or the cutting of the lawn but thankfully Phil's mom has been filling in the gaps there and not judging me as I am still figuring out how to juggle three kids while staying on top of the housework. (Hint: it's impossible.)

And speaking of my little angels, our two eldest kids have been kind of a disaster lately, and I'm at my wit's end with them.

I'm trying to find the balance between extending grace because this has been difficult for them, and sending them to their rooms for all of eternity. There has to be some middle ground. Currently I'm just looking forward to the start of school because, really, what am I supposed to do when Iris kicks Ocean in the throat because he won't stop touching her feet? Sigh. At least, at the end of the day, there's always Ruby who is currently too tiny to sass me.


Sandy said...

I have a relative who went through two autos and finally with the allo has realized great success. But the family was struggling with only one child and a business they had to keep operating. Happily, they too are beginning to find a place for the "new normal" and a year after the allo, the numbers are beginning to show great promise.

You will see improvements as well, but healing and readjusting does take time as you correctly stated.

The children are beginning to return to their 'normal' and expressing their emotions about what has been going on - actually this might be seen as good because they may be allowing themselves to express what they are feeling, where before they might have been holding back due to their anxiety. My relatives sought professional family counseling for a few months to ease them over the hump; if this is an option for you, perhaps it will help with the children.

Blessings to all of you during these days...

Preferred Customer/ Janice said...

Cassie: You are an Angel...those little angels of yours are reacting to the stress of everything and I am sure you know this. Does not make it easier.
Cassie I am emailing Phil a private email so if you look out for it under his email. I have some insights into something to help pick him up.
Glad you could blog....God is with you always.

feresaknit said...

I think you need to follow the advice of a comedian I watched on the TV last night (John Bishop - very funny). You need to sit Ocean and Iris down and tell them that Ruby is currently the favourite and that they need to amend their attitudes if they want to vie for the position! ;D

lovethebeach said...

feresaknit -LOL! Excellent suggestion!

Cassie - love you and miss you more than words can say.

goodbloodbadblood said...

Thanks Cassie, for bringing us up to date. Your kids are beautiful and it's perfectly natural that they sometimes drive you crazy.

Perhaps, adding Phil's illness to the mix may seem to be the "straw that...". But I think you've only begun to see how strong all five of you are.

With grace and courage and loving patience, you will dominate this and somehow have fun doing so.

Julia said...

Cassie: Finding your "normal" is one of the hardest things to do. We went through this just 11 months earlier than you, and we took our first vacation last Christmas. It wasn't the trip we had had to cancel last summer, or what we ideally wanted, but we had a great time getting away and pretending things were normal. No one knew us and we promised no mention of cancer or MM or hospitals, doctors, etc. for those 7 days, this helped us forget a different future than we imagined.

Although our kids are teenagers, not toddlers, you still face similar issues. Learn now, you can't make pity excuses forever so stop now. As the primary caregiver now, I tried and saw things getting out of control. You need them to help you. They need you to give them structure and sometimes that means being tough. I promise, it will help.

Start planning your new "normal" future and day-by-day it will become. We just returned from our second long-weekend road trip and they weren't the trips of our dreams but great fun. I have started to find there are days when we all forget and just enjoy the moment.

Blessing to all of you!

Roobeedoo said...

I haven't been here for a while, because I had been letting myself be sucked in to Myeloma-blog-saturation to the point where it was feeling like that was all life was about. OF COURSE it's not! And you and your family are absolute proof of the need to find a "new normal". As for kids - ha! Wait til you have three teenagers on your hands!?! (Sorry - that was downright mean of me!) They have these stages. We parents just have to try to coast through and stay sane. Easier said than done sometimes. But at least yours aren't on the "rum and cokes" yet!