About a year ago I had a friend offer that she would be available to “listen” to me whenever things got tough through my treatment. Even if she picked up the phone and all she heard was screaming—she’d listen. I thought, “Yeah right. When will I ever need someone to listen to me like that?”
When? Yesterday. Yesterday was that day. I knew I needed to talk to someone. So I called my friend Tiffany. Two time survivor of leukemia, bone marrow transplant, mom, and my friend. I don’t know what it was that broke everything, but when it all came down and I called Tiffany she answered, “Hi!” I couldn’t even get through my first sentence without her saying, “It’s okay. What’s going on??” Then she listened like no one else could because she’s been there. Because she knows what it “feels” like. All of it and she just listened. She didn’t try to solve anything. She didn’t try to make anything better she just listened. What did I tell her? It seems trivial today when things are better to recap the last couple of weeks, but I’m going to do it because so many people care. Thank you for caring. And thank you Tiffany for just listening.
The first week of treatment seemed okay. I gained about 18 lbs., itched like crazy and had Ward there with me through the treatment. It didn't seem too bad. Then I was home for 6 days, lost much of the weight from the treatment and we were back. This time with my Mom and Dad, who I am so grateful for.
In not so brief: I had a PICC line placed on the Thursday before my treatment began—No they couldn’t make it more convenient because the drug company is paying for everything so I had to go by their protocol and be away from my family for 4 extra days. Monday morning I started my treatment—things went so smoothly and quickly (Not so common). I was very grateful for a visit from my friend Bill Frey and his wife Karen. They have been a huge inspiration and support to me through this. After Monday morning my days cloud and I remember receiving medication to dull the effects of the actual drug and then receiving the drug everyday at about 3:00 then everything is gone from that time on for the rest of the day. The week just really slipped by me—except that my Mom and Dad were there to take care of me. The most clear thing of all was Friday afternoon when Ward appeared in the doorway and I felt saved. I told him to take me home and we were on our way driving home within two hours. The drive was fine (I was completely doped up) and I was grateful he was there—It was worth the $59.00 one way ticket to have him come—especially since neither of my parents wanted to drive home across Wyoming in the dark.
The side-effects from this treatment were extreme. Again I gained about 20 lbs. (Try gaining and losing 20 lbs. twice over three weeks). This time I was quite dehydrated throughout the treatment so the nurses told my mom. By the time I got home I had through my incoherence in the treatment scratched many places over my body to open sores. When Ward stepped in and made me stop scratching they scabbed over so I had patches of scabs, about 3-6 inches each, over my entire body and then my body began to peel as it would if you would have a really bad sunburn. My sister who saw me on Saturday said she couldn’t believe what I looked like “the little slits for eyes, the puffiness, the scabs the peeling skin everywhere”. Are you grossed out yet? Now add the ultimate fatigue, joint pain, the electric shocking sensation that you feel every time a bead of water from the shower hits any part of your peeling body, and the extreme pain from lotion applied to the open sores to help them heal and add to that the migraine that had to top things off yesterday and you’ll understand what a good friend Tiffany is.
Maiya told Ward yesterday “Mommy cried and cried because she’s not a strong mommy.” I forget to kind of keep things to myself around my 3 year old. But it was verbatim what I had said all morning. All I wanted was to be back to how I used to be. I wanted to be a strong mommy that didn’t have to have help from anybody else. I wanted to be able to have control over my life and my future.
I have an eight week break right now. Eight weeks. I’m so happy. I have scans but no treatment. In all honesty I think that if they’d told me yesterday that the treatment was working and I needed to start another round I would have told them NO! I think eight weeks will help me forget. I hope it does—and I hope the treatment is working.
Just know that I’m okay today. Why did I tell you all this? I don’t know. It’s me. It’s my life and this is all about documenting and getting it out there so I can take a good look at things. I hope you’re not too disturbed. I hope you know that while yesterday was a lot about crying and screaming (a little). A few too many of those moments were in the form of prayers. And I am so grateful for the immediate answers to so many of them. For a friend who would listen, for a husband who would do everything, for a loving Heavenly Father who made things much better today.
I love you all. Make today a good day.
7 months ago