Post chemo update

I've been away form the boards for a while, other than one quick check one day while we were gone. I really needed a break from all things "cancer." My husband and I went to our second home in Mexico, and it was just what I needed. My days weren't focused on medical appointments and cancer. They were focused on enjoying the ocean, sun and warmth, along with resting and visiting with good friends. A wonderful place filled with energy to start me on my journey returning to health.

While we were there, we celebrated my husband's birthday and my end of chemo. We did it together - a Celebration of Life party. It was a fantastic day with lots of good food and good friends celebrating with us.

At first my energy started to come back, but then I had a set-back and am still struggling with fatigue. I am not nauseated anymore. Food is starting to taste pretty close to normal. My GI tract is healing. I still have a couple sore spots on my tongue, but the mouth sores are a lot better. Unfortunately the neuropathy is worse. It seemed to get a little better for a few days, and then got worse and worse. Now it has leveled off, but hasn't started to get better. Overall, this is a heck of a lot better than I felt during chemo, so I hate to complain about the lingering issues.

I have had a few very strange things happen. That isn't surprising to anyone. I'm always the oddball. I have not been able to figure out my current problem. I assume it is related to chemo, but then again maybe I shouldn't make assumptions. I haven't heard of this from anyone else, but maybe I've just missed it?

When I was on my walks, my fingers would swell a lot - to the point of being painful. My feet also did some swelling. (I do have a lot of neuropathy in both, but this didn't seem tied to neuropathy.) Each day I walked farther and faster for several days, feeling stronger each day.

Then I woke up one morning with my joints of my fingers VERY swollen, and my hands hurt very badly. And the fatigue was overwhelming. I could not go for my walks. It was all I could do to get out of bed. The swelling went down a lot, but the backsides of my fingers had big read blotches on them, and those hurt. The next day - same thing, but I also started to get little blisters in those red areas. If I so much as bumped anything against the backside of my hands the pain was awful. My middle fingers on both hands were affected very much, with the fingers on each side of them affected, but not as badly. Nothing on my little fingers, and only a little on my thumbs.

Then I got a big red blotch on the inside of one wrist, and a strange red blotch that looks like a large smiley face on the inside of that same arm. A few days later the wrist blotch developed the blisters too. My fingers went from hurting to itching. Most of the blisters on my fingers are gone - replaced with tough scaley skin. But I do have two new blisters, and one really hurts again. Off and on they all itch. The blisters on my wrist have gone down, but the spot still looks bad. The "smiley face" on my arm is still there and does not hurt or itch and has not gotten any blisters.

Now along with this, I haven't had all the joint swelling anymore, but every joint in my body aches very badly. I get up like an old lady. In many ways when I first try to stand up, I move like my mother who has fibromyalsia. Evertying is so stiff and sore it is hard to get things moving. If I sit for more than 15 minutes everything stiffens up. I can't keep moving all the time because I am so fatigued. Otherwise I would - just to keep this stiffness and pain away.

I stopped all supplements, and stopped my omeprazole. But I have had to continue my Coumadin. It is the only chemical I've been putting in my body. I did put Cortazone cream on my fingers when they started itching so badly. It did seem to help. But other than that I've done nothing for this.

Has anyone else experienced this? Any clue as to what it is? Some odd auto-immune response? A weird after effect of chemo? A reaction to the sun due to built up chemicals in my body? I've been just waiting for it to go away, but it has been over a week now. I'm so tired of doctors and medical facilities that I hate to go see anyone if I don't need to. But if this is something that could escalate, I'll kick myself if I don't go in. I did get full blood panels Wednesday.

I just got off the phone with my oncologist's nurse. My CEA is 2.1!!!! That drops my scanxiety level a lot! I have my PET/CT next Wednesday and my onc appt on Friday. My red count is low and my creatin is low, but everything else looks great! HOORAY!!!

I'm waiting for another call back after she talks to my doctor, to see if he thinks I need to be seen for my wierd skin and joint issues.