Here I am, last cycle, cycle 12. I met with my oncologist in Illinois last Tuesday before we left for Oregon to have my every three month check up. I asked if I could start the ATRA after we got to Oregon, meaning today, instead of last week. Didn’t really want to get the whole ATRA headache while we were road tripping. Dr. Graham was cool with that. So this morning I took my first dose. I can’t believe this is my last round of it. Today I meet with an Oregon oncologist who will be supervising my care while I’m here. Not the same doc I had before as our insurance is changed, but we have the appointment all set up with this new guy and they are planning on giving me my shot afterward. We’ll see what the dealio will be here, probably the same as what I’ve had in Illinois.
Cycle 12, last round of ATRA… amazing.
This has been a busy day, already. Karen was waiting for her new phone, which didn’t come. Come to find out delivery was attempted at her old work address, which shouldn’t have happened. After many emails and calls we found out it was at the Fedex facility over by the airport, so in we went. She now has her new phone, though we haven’t activated it yet or set it up. That is for tomorrow. Yay for the Blackberry Torch. We hope.
In other news… we also haven’t gotten another package containing Christmas gifts from Old Navy, which was also delivered to her old work address. She hasn’t been there in what??? a few years? I don’t even know. So it got sent back to Old Navy and was supposed to be overnighted back to us at the house in time for us to take it with us this Thursday when we fly… we will see if it gets here. She just got off the phone with them and they didn’t really know what was going on.
And… in the bigger news I guess…. seems there’s an issue with me getting my shot at the particular clinic we thought we were going to get it at. It’s more complicated than anticipated. We may be traveling to Manchester every week for a blood draw and injection with a private pay oncologist there. We don’t know yet. Karen is getting up tomorrow at 6:00 to try and work something out with someone. It’s a blood draw and a shot that takes less than a minute to give me. Hope we get this worked out tomorrow. It’s causing a tad bit of anxiety. Good news is that we are going and we will make this happen one way or another. AT least we have nearly a week there before I’m supposed to have the next blood draw and shot (I have a blood draw tomorrow here and a shot on Wednesday here this week).
We have lists made up of stuff to buy before we go (not that much now… vitamins and such) and lists of stuff we can’t forget to take…. I will be happy when we are on the plane to Chicago. Then it’s what it is…. and we are on our way to see the kids and that grandson of ours! Woo Hoo! Christmas and New Years in Britain. Fun fun!!
I’ve been holding my breath for what seems like a lifetime. Moments of being so very afraid, but not letting myself think about it. So scared sometimes. When something like this happens to you you fight that all the time. I am, as all who know me would probably attest to, a positive person. I think positively, I act positively, I smile all the damn time. It’s who I am. I have been that person through this process so far and will continue to be I would imagine. But there have been times… thinking what might happen, what could happen. Dark moments. I didn’t let them get the best of me and always managed to push them back and away… but there has been a sort of hum inside. A holding of my breath.
With each treatment round I’ve kept the attitude, this is killing it, this is curing me. I kept thinking that, even in the beginning when I was most sick… and subsequently, every time after another round of chemo when I didn’t feel good or couldn’t go anywhere because I was neutropenic. I kept saying… this sucks now, but it’s killing it, it’s taking care of me.
And you know what? Today I got the best news of my life…. right up there with when my Mom got past her bought with breast cancer and when Karen told me she loved me for the first and all the times after, and when we sat on that beach in Hawaii making a commitment to each other, and when Mary told us she was pregnant, and when I presided over Mary and Martin’s wedding. Those, some of the very best moments of my life, were joined by the news today that the molecular scan of the bone marrow biopsy I had two weeks ago, results just back, showed no abnormality. None. There was no sign of leukemia in my marrow, in my chromosomes, in me. It was totally clear.
I just spent the last half an hour crying on and off, and will probably be the rest of the day. I called Karen immediately (she’s traveling for work) and cried with her on the phone. She thought, initially, something was wrong because I was crying so hard I could barely speak. I called my Mom and I called my brother… same thing… crying so hard. Crying out of happiness. Crying, and finally… letting out a little breath.
Man oh man… I have been really good about holding it together through this process. Staying focused, not letting it get the best of me, etc. Very good actually. Keeping my eyes on the prize as they say… the end of the consolidation rounds, entering maintenance, not having these ups and downs in my numbers that cause all this other craziness to happen. I’ve been doing great…. and then today happened.
I know it’s natural… bound to happen. I just kind of have been falling apart all day. Crying, feeling overwhelmed. Really missing my honey. Wishing I could be with her and our new grand baby. Or even wishing she was here. I know I will get a grip. Tomorrow will be better and I will be back to my fighting self… it’s just been tough today.
Taking a big breath right now….
OK… snapping out of it.
Don is here tonight. He came to spend the night and part of tomorrow with his honey. So nice. And… Stan, my lovely friend, came to visit me today. It was good to see him. Always is. His daughter is in the process, I think, of giving birth to his new grandchild. Only three days apart from ours. Kinda cool.
I’m bucking up… getting it together. This has been a message from your emotional broadcasting center… but this has only been a test. We will resume our regular broadcasting immediately… not as emotional… strong, determined, and resilient. That’s the me that’s getting me through this…. and will continue to.
It’s day four and it’s almost over and on to day five. Tomorrow, after chemo and a bit of time after for recovery, pick up of meds, and getting our stuff in the car, we will hopefully be heading home by mid afternoon. Can’t wait to get back home this time. Definitely more relaxed and mellow there.
Today they premeded (not exactly a word, but you know sometimes there are no words but the ones we make up) the heck out of me…. Steroids, anti-nausea, Ativan, Tylenol, and an in iV dose of benadryl. It seemed to do the trick along with holding warm compresses to my vein/iV site during the infusion. Quite the process. The new IV site is in a smallish vein and my veins are small anyway… And they shrink up when I get nervous. Like I said, a process. But hey, one more day in this round. Yay! Almost over and home.
Karen went to Spaghetti Factory again this evening. Food and another dose of Ativan (which is for nausea as well as nerves), plus a walk, has calmed the nausea I was having. That was awhile ago. Now I’m having some tea my honey made. Decaf green mandarin orange. She also rubbed my feet during the infusion and then my back later… Earlier this evening. She is amazing.
June 1 I went into Sunnyside Hospital and July 1 I was finally able to leave. It was a very rough last couple of weeks there. I think the chemo finally caught up with me and my system. My GI tract totally got wiped out. Meaning… loads of bad things happening. I felt terrible and pretty much was handling things hour by hour. It wasn’t good, but I kept looking at it like along with the feeling so terribly bad the chemo was also taking care of the bad stuff. That’s the idea. It’s just tough getting through some of it. I did though… thanks to Karen and Mom and the nurses at Sunnyside.
Now… home. And happy to be here. I feel more rested and stronger. Finally yesterday and today eating a little more like normal. For a while at the hospital I wasn’t eating. I was on a liquid diet hooked directly into my arm because I couldn’t eat. That ol’ GI Tract thing… couldn’t handle food.
Next steps…. I go for blood tests tomorrow, then have my first outpatient appointment with my oncologist, Dr. Bigler, on Wednesday. He will go over the blood work and talk about where we are at with everything. I’m supposed to have my next bone marrow biopsy in the next week. That will tell us where we are at. If I am in remission then we move on to the first of three consolidation rounds (three more rounds IV push chemo) all the while taking the oral chemo meds (which I am taking every day).
In other news… my baldness is almost complete. I’ve been joking about how I’ve been losing it just like male patterned baldness would occur. Top front first. Mom gave me another close shave with the clippers. I still have stubble up there, but it’s going. And I have to say… I don’t really mind. Easy to take care of and really not that bad looking. Who knew I’d make such a good looking bald woman. LOL
So that’s pretty much it for now. Karen and Mom continue to take such awesome care of me and thanks to some of our friends who, as a birthday present for Karen, came up and did loads of weeding in our flower beds. That was the best gift you guys could’ve given her. We love you very much. And Don and Mom, thanks for the yard work as well. You guys have been so great through all of this. I am just so grateful for all the fantastic people we have in our lives. Blessed and lucky. That’s what we are. Blessed and lucky.