Roll Your Eyes!

Yes, I finished radiation on the 9th of August. I was so excited about not having to see some medical person every day, that I forgot I had an appointment with my Oncologist the very next day. So much for the "Free at last, Free at last, Thank God Almighty, I'm free at last!"

We rescheduled it for a week later, and this time I remembered to show up. He's brought in a partner, so we had our introductory heart to heart talk. He passed my rigorous criteria, and I will see him again next month. No labs, but will next month.

I'm still not cleared to return to work, and will be off most of September. For me, I need the rest. Fatigue is an interesting animal. When that's about all you know, you don't even know you have it. It wasn't until one of my online CLL friends put it into words: Fatigue is like having another person inside you desparately trying to go to sleep while you're struggling to stay awake to get some things done. And I can tell you that the things I actually accomplish are a mighty tussle.

Tuesday, I had my initial consultation with the plastic surgeon. It was the worst experience I've ever had. He said, "I can't, and I won't do it!" His excuse was that I did not have enough tissue for it, it's a 10-hour surgery, and it wouldn't be worth it. I've never been told that I don't have ENOUGH tissue for ANYTHING! He further said, "You ought to be glad you haven't died from your cancer." He really didn't give me any hope or suggestions, just told me I should go to the University of WA for a second opinion. Yet his office couldn't offer any names or direction on where to start. He even commented, "Whoa, look at that!" to his nurse when they saw my scarlet red radiated left side.

I was utterly devastated. It still hurts when I think about the encounter. Thankfully, one of my Bosom Buddies had a picnic planned for that night, so I had some genuine support right away, but I still had to drive from one end of town to the other to get there. I also let my oncologist know what had transpired, and he told me to go see Dr. so and so.

Here, the hope of reconstruction had lessened the horror of the bilateral. I knew I couldn't do it until next summer, that there would still be scars, but just the idea that I could look somewhat normal at a future date was some of what's sustained me throughout all this.

Finally, most of the skin in the radiation area has peeled, and those parts look almost normal. Ok....slightly tanned. The rest around the incision and under my arm are still pretty red and sensitive. Silvadene is such a refreshing, cooling salve for the burns. Just messy on the clothes, though.

Staying close to the phone for word of my new grandson's arrival....(He's due right NOW!)

Till next time....Love ya!

Only Three More Days of Radiation!

Yep! Only three more days. I see the oncologist on Thursday, the 10th, and hopefully get a release that I have to turn in to my school district by the 11th. I would like to have a pet scan or some sort of diagnostic test to prove that nothing is left lurking around, but what could they do? They can't do a mammogram or MRI since there's nothing there to do it on. A blood test would only show where my reds, whites and platelets are, and a bone marrow biopsy wouldn't make sense. Besides, that's pretty barbaric, and I've learned enough about BMB's to know I shouldn't be needing one unless I was going for a stem cell transplant or in a clinical trial.

My radiation area is starting to peel, and the newest med (salve) that the doctor ordered has really helped with the pain. Now why didn't they give that to me sooner? That's the third topical that I've tried. The doctor had even suggested I use one or two of my hydrocodones to let me have a night where I could sleep last week. One night two tabs didn't help much because then my whole body started itching. So I had to go find the benadryl and take a couple doses of that before I was able to actually get any sleep. I believe that was around 2:30 AM.

That's something that concerns me. I noticed that when I had the bilateral that morphine made me itch intensely. Having had experience with Hospice, I know they give the patient morphine for the pain at the end. Now if I'm itchy from it, what will they be able to use when it's my time? Now that's scary! I'm also in a pithy mood right now because one of our nicest CLL'ers just died last week. His CLL had turned into the deadly "Richter's Transformation," and that's when you know it's all over. My personal bias is that it's the treatment that causes "Richter's Transformation." Another friend had left us earlier this year after doing everything he could to fight the dragon and then moving to NM to be close to his beloved Guadalupe Mountains. He even got to play his guitar in the Carlsbad Caverns and shared that with the rest of us CLL'ers.

Next week on the 15th, I see the plastic surgeon and my dentist. Then I think I'll be done with medical stuff for awhile. I figure we'll do the reconstruction next summer so I don't have to use up my sick leave.

This has been a long haul for me. Almost 8 months from when it all started. I never realized that this journey would take so long. Guess it ain't over till it's over, I guess.

There's More

I really took advantage of the 3-day "rest period" by sleeping a lot and slathering on some RX cortisone cream. Have you ever read one of those pharmacy fliers that they give you? This one basically said, "This is some really bad shit, but your doctor figured the benefits might outweigh the horrible side effects. So don't you dare use it on any other body part or for any other condition than for what your doctor prescribed. Don't apply more than 3 times a day, and wash your hands carefully before and after applying. Finally, whatever you do, don't use it in the underarm area unless your doctor said you could." Now just where do you think I need to apply that stuff? That area gets either terribly itchy or terribly painful until I put on that cream. However, early this morning it didn't seem to even give me any relief. I got pretty desperate and grabbed a vitamin E softgel and put it on. What a relief! For awhile.

Oh, well. Starting today they won't be zapping me from all sides. They made a lead template with the opening in the shape of my scar plus 2 cm. all the way around it. So, now I just get 30 seconds in one zap, but it's pretty darn close. Fortunately, I don't have to reach for the bars or get situated into a form for my head, arms, and shoulders. I actually get a pillow! And I'll be doing the whole 33 treatments, so next Wednesday will be my last visit there.

I was giving them a bad time, and they asked where I worked, and what I did so they could come and bug ME sometime. When I told them it was in a DI program, they just shook their heads, chuckled, and informed me that they're not like my kids.

When they changed the walls, etc., I had to go look for my bathrobe. The department had converted one of the men's dressing rooms into a closet, but one had to go through their anteroom to get to it, so, as I'm going in there, some crotchety old (new to that area) patient practically tackled me, and disgustingly told me that I was heading into the men's dressing room! Now everyone waits in our tiny waiting room next to the dressing rooms. (Those who don't have to remove any clothing lost their big waiting room with the tables of 1000 piece puzzles.) Well, after I did my changing in MY dressing room and came back out, we got to talking. I noticed he had a finger that wasn't quite as long as it should be, but, of course I didn't point that out to him. Seems he'd retired from the Navy over 30 years ago, so I was going through some ships' names to see if he'd ever been on any of them. No connection there. He finally informed me that he worked mostly in commissaries throughout the world as a meat cutter. You know this chemo brain is slow, so it wasn't until I got home that it dawned on me what might have happened to his finger! (I know....I'm bad!) ;-)

It's going to be nice having my life back when this is all done. However, I have done a lot of reading. My radiologist and I even exchanged books. Although she returned my book later because it was a signed gift from the author, she let me keep her book. (She said she'd bought 2 extra copies to give to someone interested.)

That's all for now, folks!