Look out Suzy Homemaker

I have done 3 loads of laundry today.  Start to finish.  I'm becoming a regular little homemaker.  I rarely get more than one load of laundry done in a day because I have to walk up and down the stairs so many times.  Of course I am still in my PJs, which I am entitled to do occasionally.  I'll be spending some time in that jetted bathtub later on this evening.

I have done some research on my symptoms and it can best be described as scar tissue in the joints.  It sneaks up on me; yesterday I realized I cannot straighten my arms.  So all day long today I've been grabbing the doorposts and stretching, pulling, working to get them straight.  They're not straight, but I've put in the work.

Stretching and yoga definitely relieves the pain.  I keep rubbing in the cortizone cream because they told me to.  Hopefully all this activity will deter any more freezing up in my joints.  This is chronic Graft v. Host Disease as opposed to acute GVHD.  I didn't even know there was a difference.  One turns up in the first three months and one after that.  Chronic GVHD usually disappears after 2-3 years.  So my mission is to stay active.

Saturday night I went to a cocktail party that was a "non-shower" for some friends of mine.  The bride didn't want to sit and open gifts in front of everyone, and I don't blame her.  We enjoyed a nice evening with wonderful hosts and plenty of opportunity to visit with the guests of honor.  Peggy and I went shopping to find some appropriate togs for me to wear and here I am.  I'm having some fun with my hair these days.  It is so curly that my sister asked me if I got a perm in it!  My SISTER!  ha ha ha.  She sees me every week--she just hasn't seen my hair with that much gel in it.

I took a road trip last weekend to Cowley County/Wichita and visited some aunts, uncles, cousins and friends.  I'll be going to that neighborhood again the middle of April so I hope to see everyone I missed then.  This coming weekend I'm heading to Cinncinati with my cousin.  I'm going to be godmother to her daughter and I'm very excited about it.  I'm also excited about getting together a box of Easter things to send to Harrison.  His little sister is going to be here before I know it!

I'm planning a trip to Italy in October--have I mentioned that?  Janet will be meeting me and Robbie will be joining us along with Chris from UK.  It's a trip Janet and I pencilled in for Spring, 2009.  We've had to wait but we're planning now.  My young friend, Hilary, is in Florence right now so I am taking notes from her Facebook posts about things I want to see.  So my motto when it hurts to move is "On to Italia!"

~Cathi

A little panic

Mom is doing great.  She is meeting with the doctor today to get the radiation plan.  I guess if you have to get cancer it's nice to get one they know how to cure.  And for which the treatment is not too abusive.

On the other hand I am into some graft v. host issues that are beginning to scare me.  I somehow thought once you're through the transplant, you're good.  I vaguely remember warnings about long term GVHD problems but only vaguely.

In my face constantly are pain and restricted movement in my joints.  I can neither flatten my hand nor make a fist without a lot of grimacing.  The more I move the looser I get but every movement hurts.  Every step, every standup-sitdown, every bend over, every reach begets teeth gritting.  Some days seem to be worse than others, but it's becoming discouraging.  At the clinic Wednesday Julie explained it as a thickening of the tissue, in this case the skin.  She classified my situation as 1 on a 1-3 scale.  I can regain the flexibility but I will have to work at it.  Yoga or Pilates every day.  I have a one pound jar of cortizone cream to rub into my joints.  Regular massages.

I haven't decided if the good and bad days are real in terms of more or less pain, or if it's a change of attitude.  Seems like with K-State's fantastic win last night today would be a good day [in the case of attitude] but today is ultra painful.

Other things to worry about include elevated liver enzymes.  Julie ordered a CT-scan of my belly to have a look at my gall bladder.  oops!  no gall bladder anymore.  So McGuirk referred me to a liver specialist.  I need to look up that moniker, hepatologist or something.  I worry that my liver is thickening and wonder what can be done for that. 

The rubbing in my chest every time I draw a deep breath has just been a result of some really bad pneumonia and scarring.  But added to the joint pain and liver concerns I worry about that too.  Are my lungs afflicted with GVHD?  On the up side I don't have any trouble breathing or drawing a deep breath and it doesn't hurt.

Have I survived this incredible journey of the last 18 months to be eaten by GVHD?

I have resisted doing research on this or going back and rereading the warnings from before the transplant.  Most of the time I want to work through it in a logical fashion.  For example I had already scheduled daily Yoga sessions before Julie prescribed them this week.  I have changed around the vitamins I'm taking and added more.  I have pretty much stopped taking the Gabapentin for the tingling in my feet. 

That will be the first plus here, the tingling in my feet is much much better.  It's hardly painful anymore, just annoying.  The next plus will be that deep soaking, jetted, bathtub that Walt put in when my bathroom was redone.  And that's where I'm going to be for the next half hour.
~Cathi

Mom is A-OK

Mom had surgery Tuesday to remove the lump in her breast and it went exactly as planned.  They did not have to remove any extra lymph nodes and she was headed home by 3 in the afternoon.  She will have 30 days of radiation after recovering from the surgery.  I guess if she had to get cancer it's nice that she got a type often seen that doctors know how to fix.  Seems like she should get a break though.

I am feeling good again, finally.  After several weeks of not so good.  I'm feeling so good that I'm taking a road trip tomorrow to visit family in Wichita.  Folks who don't travel so well anymore.

My joints are stiff and sore but the more I move the better they feel.  Some times my body doesn't really buy that.  "I'm sore as hell and you want me to MOVE?!?"  The bottoms of my feet however, are much sturdier.  So much that I have stopped taking the medication for neuropathy. 

The big news today is about Mom, not me.  Isn't that nice?
~Cathi

Still 100% Donor!

Sunday night and I'm not quite myself though I am at my house which is nice. I am sure I will enjoy daylight savings time by the end of the week but today has been weird. I remember how the dogs would start pacing for their dinner early because they don't know the time has changed.

In fact, this is the first time change I've really experienced in a couple of years. My days pretty much ran together and I didn't really notice the change. Today I noticed it. And I want to know where the "daylight" is, as in sunshine.

The big news is that Mom has breast cancer. Stage 1 intra-ductal carcinoma. The most common, most curable. She will have a lumpectomy followed by radiation. Dang the luck!

I have still been battling fevers and on Wednesday I had a reaction to a drug I was getting intravenously. However, also on Wednesday I got the news that my DNA is still 100% donor. This is very exciting. Now there will not be a biopsy until the one year mark.

I have enjoyed watching the Big 12 basketball tournament. Even though KU won the final game, I thought KSU played great. KU is simply a phenomenal team this year. I'm happy the Buckeyes won this afternoon in the Big 10 tournament.

In other news my niece, Caroline, spent the night with me Friday night. We have been shopping and choosing items for her bedroom (she is 11) and she took me to dinner to thank me. Saturday morning we did some more shopping for the bedroom. Tomorrow my niece, Margaret, is coming to be here for a couple of days while Mom has surgery.

I have missed a trip I was planning to visit friends and relatives. Now I think I will just get up one day and feel good and get in the car. I did get a fragment of information Wednesday from Dr. Ganguly that some of the aches and pains I have may be part of my new life. I've been a little discouraged soaking that up and trying to decide next steps. I don't know if I want to know a lot of science about it--maybe I just want to try to deal with it in ways that seem obvious to me. I will make up my mind.

It is sometimes very tough to be upbeat when everything hurts. I have discovered that some of the problems I have that I thought were strength are actually flexibility and that flexibility is what I don't have. First step is yoga classes where I have an instructor to push me to stretch in ways I don't think of on my own.

OK. I have to be at work early tomorrow.
~Cathi

If it isn't one thing, it's another

So. I got over the sore throat. Then was attacked by a severe headache. Which was accompanied by an itinerant fever that never reached the 100.5 threshold, but never went under 99.7 either. I swear I did not do too much after the sore throat went away, though it was very tempting to just tear through the house and get everything done that had not happened since Monday.

I went to the clinic twice last week. They did the bone marrow biopsy on Tuesday and I saw Dr. McGuirk. The biopsy results are coming back "with reservation" or without certification or something that means the sample was not good enough to make any calls until the complete chromosome analysis is back which should be this week. I had the headache Tuesday but it was coming and going and there really wasn't much to do for it. McGuirk told me I could go camping just not get my hands in the dirt. I think he hasn't been camping much. (giggle)

I went back to the clinic Thursday and once again all the tests for evil things regarding the headache and fever came back negative. Friday I visited a chiropractor. Presto! headache immediately lifted. Why didn't I think of that earlier? What a huge relief.

More exercise Ms. Maynard. I know I am not doing enough. I guess I don't know where to start though walking would be easy and productive. Someone at the clinic suggested water aerobics and that sounds like fun. However, I don't have a swim suit that fits and trying on swim suits does not sound like fun. Meanwhile, drink lots of water and get in a few yoga stretches with the Wii.

The nice weather this past weekend just about drove me crazy. I SO want to go outside and dig in the dirt. I know that to get new ideas, I need to be out there digging and preparing soil and clearing out and spreading new mulch. It's not the same when someone else is doing it for me, but it is ever so appreciated.

I have managed to catch up the laundry for the first time since I've been home. Finally, going up and down those flights of stairs is not so overwhelming and physically demanding. Finally the clothes which were laying about in piles have all been laundered and returned to a closet. And gratifyingly, the pile of giveaway items grows. It might be that I have been dilatory about culling my wardrobe for a few years, but this is the perfect opportunity to get serious about it.

Other small victories include opening the Gatorade bottle without the jar wrench and being able to drain the 3 qt saucepan with one hand. I take my evening pills with Gatorade and I stopped doing that a while back when I ran out. I took them with juice or water or tea or whatever, but that is when my potassium dropped so I'm back on the Gatorade (and the potassium is back to normal.) I have a jar opener that looks like an oil filter wrench except the loop is rubber. It's very effective on any size lid but it's nice to have something measurable to point to and say I'm gaining strength.

It is Monday and it is a work day and I must do some work. I am tickled to be feeling good once again. And I aim to stay that way. Lots of water and exercise.
~Cathi