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

Bit of a slump

Hello on Friday. It's been a long week for me with a sore throat. I went to the clinic Wednesday and all the tests for evil things came back negative. I haven't had a fever or a cough or rash or anything besides a very sore throat. I started an antibiotic Wednesday and the throat is some better today but still sore. I have cancelled all my plans for this week and also missed two funerals I would have attended.

So holed up at home I've fixed computers and researched on line; caught up on periodical reading and crossword puzzles; watched the Olympics and anything I had recorded. Sigh. I'm on the verge of boredom. I'm tired of the sore throat. I might be tired because of the sore throat.

Perhaps the number of events I had to cancel is a clue to why I have a sore throat. Maybe I am doing too much. Certainly I say YES! to nearly every invitation. I am anxious to clear things out of the house that are no longer useful. I want to frame pictures, hang pictures, shop for accessories, all today.

I want to get the business onto a new track, going the same direction of technology. I want to see every customer, catch up on their concerns and make decisions about the best way to handle them.

I want to do the things I could not do for so long. And I want to do the things that are newly important to me. I want to be a health care activist; clean up Lake of the Ozarks; work with teens in the Scouting program. I want to make things for my grandchildren and bake things for my kids. I want to see every theatre performance in Kansas City, hear the musical ones and visit all the new restaurants. Do you know how many restaurants opened from July, 2008 to January, 2010? Dozens!

And for some reason I feel a compelling urgency to do it all NOW.

To quote a much loved boss from my past "Ain't gonna happen, Cathi. Think of something else." So I think I will make a list and mark everything A, B or C. Though I know from past lists there will invariably be A1, B2, etc. I can't decide.

So I'm on to another day of laying low, reading, plotting, planning and ... making lists. I am grateful to be doing these things in my house with my stuff [and not in the hospital like my fellow survivor Connie is today.] I am grateful the sun is shining and the temp might get above freezing today. I'm grateful my arms are now strong enough to snap the sheets when I'm making the bed; and looking forward to the time when I can fling the covers back to get out of bed. I appreciate my satisfying new furniture in the family room and the cozy throw to snuggle under.

A gratitude list. The best kind of list.
~Cathi

Choosing only what I want

I'm on a mission to clean up my house. And I have help. ha ha ha. This job is too big for one person. I marvel at how one person could accumulate so much stuff!

There are the clothes. I don't have very many that fit right now and that is okay. I can live with fewer clothes. And I'm not crazy about the ones that don't fit anyway. Except the jeans. I really need some jeans that fit. Being fifty something, healthy and wearing hand me down jeans is suddenly bothering me a great deal. I am terribly grateful for the jeans that came from a friend when I was first able to wear clothes. But a shopping trip is in order.

That is one of the questions I asked at the clinic Tuesday. "Is it okay for me to go in a store and try on clothes?" Julie (nurse practitioner) looked at me like what's the question. Just live like a normal person. She even suggested water aerobics to help with my feet and strengthen my arms. No lakes but a swimming pool is okay.

My counts were good. Up. Hemoglobin is 9.6 now. Haven't seen that number in a long while. White cells are normal. Absolute neutrophils are normal.

I am very conscious as I go through the house, the remaining cartons and bags, the stuff that is "restored" to its place, that I can choose what I want to put back in my life. Everything was taken away and now I am carefully putting back in only what I want.

That is how I am finding I can live with less.

Lori came up and helped me this week. We went through the bins in the front room. We arranged the furniture in the front room so it is usable. I can sit in there and read the paper which I love to do occasionally. When there is a sunrise--which we haven't had for a while--the sun comes in the windows and I don't need a lamp.

Today was brilliant. The sunshine was fabulous.

My potassium was low for some reason this week. More bananas I think. I have to take potassium pills and those things are big honkers. Even cut in half they are enormous. I used to have to cut them in half just to swallow them. But I will be more conscious of my diet and at my next visit it will be normal. And I can do without taking another honking big pill. Tonight I made potato soup with 3 good size potatoes and then I ate every bit of it. I'll bet my potassium is normal tomorrow. Too bad my clinic appointment isn't tomorrow.

So I will continue making my choices. I truly miss having fresh flowers in the house. Not so much the plants, but the flowers.

~Cathi

Just not yet.

Mark came for a visit this weekend and it was really nice to be able to do things with him and for him. This is the first visit where I've been healthy enough to do much with him. We went to Louisburg Cider Mill today and I actually went inside the little country store. When we went in October I had to stay outside because there were too many people inside. I had to drink root beer because the cider is unpasteurized. But today was different and very pleasant in the snow. The little store with its shelves of homemade jams and chutneys, soup mixes and apple cider pancake mix was warm and homey in the cold weather.

Daisy came along with Mark for a visit and she remains charming as ever. I took some fine pictures of her but I forgot my camera at Mom's this evening so no photos with this post. I hate not being able to pet her and play with her. She camps in the corner where her kennel used to be and I wish she could camp for longer.

I bought one of those pill caddies with a spot for morning and evening pills. And all my pills fit in the compartments. There's a milestone! I remember parceling them out into a dessert dish at Mom's house and there was literally a pile. So this is nice. I can take them all with one glass of orange juice (or Gatorade at night.)

I am still frustrated by the lack of strength in my arms. Tonight at Mom's I was trying to help her with dinner and I struggled to hold the pan with two hands. I couldn't fold the afghan neatly after I used it because I have no strength when my arms are raised. More weights. More weights.

I went to a yoga class at the Cancer Action Center Friday and it was interesting. The poses were for the most part much more complicated than I can manage. I can't balance on one knee--I can only barely kneel. And when I kneel my mind is reeling at the idea that I will have to get back up. I must keep doing these things until I can do them without thinking. Right now there are sheets to be folded and the effort seems overwhelming.

The overall aches seem to be less so I am surprised by these tasks that I struggle to perform. But it's always "yet." I simply can't do them yet.
~Cathi

Clean Teeth

Got my teeth cleaned Tuesday. What a great feeling! I can't remember when a cleaning has made such a difference in how my mouth feels. When you have the pearly whites cleaned regularly you don't notice the grunge. After 18 months I noticed it! The dentist reported more good news that my mouth and gums look healthy. The only teeth needing attention are the same two that needed it before I went in the hospital. (Remember I had a temporary crown that fell off when I was first in the hospital? I was in the process of getting some things taken care of.)

Today I went to the Garden & Remodeling Show. I stuck with the Garden side of the building. I had lunch with Bridget and then we toured the American Royal building next to Kemper. I do not know why I was so anxious to go to the garden show since I can't garden. The show was a bit disappointing. There were no big displays from which to get ideas. I guess I need to go to Wichita for that. (The Wichita garden show is spectacular.) Nevertheless I bought some bulbs and rhizomes. Stargazer Lilies, 1 yellow peony, some purple tulips and a couple of Bleeding Hearts. They had some tangles resembling twine in bins labeled "Hostas." I've never seen hostas like that and I didn't think this was the year to try but they were intriguing and seriously less expensive than growing green hostas. Hopefully there will be a kind soul to plant these things for me and then I can devise some protection from the lawn mower. I would like to plant the lilies in the spot where other lilies have been mowed down the last couple of years. They came back a couple of times, but too much mowing and finally...no more lily in that spot.

My feet hurt this evening but the rest of me feels fine and energetic. I will try my brain at the Friday crossword shortly, always a test of wits at the end of the week.

I have spent two days in my office this week. Totally in my office, without leaving the house. There are no more piles on the floor or the futon. The bookshelves are not exactly attractive, but you can locate an item on them. I also worked on busted computers. Two out, and two more to sort out. It's quite a process and I will get better again at knowing when to quit trying to salvage the install and just wipe the hard drive. Those fellows who work for "Geeks to Go" know when to wipe the hard drive--FIRST. They don't even try other options.

So my office looks nice but the rest of the house is a true jumble. Mark is coming up this weekend and I feel like I should at least fold the clothes on his bed but I don't know if I will get to that. They may just be on the couch in the morning. sigh.

This is normal life. Confusion and lists and never getting finished. One reason things don't happen as fast is that I like going slower. I like enjoying the moment even to iron or sweep the floor. I like taking an extra 15 minutes over a cup of coffee and the paper in the morning. These are little pleasures I would not allow before 7/11. So I'm defining "smell the roses" for me. The demands of the outside world can wait, just a little while.

~Cathi

Ordinary events are exhilarating

I've just returned from a Scouting District Dinner where I cheered for Troop 91 award recipients. Brant Tidwell received the District Award of Merit and John Jurcyk received the Outstanding Committee Chair. Well deserved awards. Both of these fellows have been keen organizers of the troop to help during my illness and recovery. This was the second outing this week. Monday night I attended the troop parent-son banquet and had a marvelous time.

I cannot seem to put into words how it feels to be "out." To be able to go somewhere, eat buffet food, say hello and hug or shake hands. It is a routine event for most people. To me, it is fresh and new and exhilarating. I saw people tonight I haven't seen since before I got sick. Most of them knew I had been sick but some didn't. One fellow commented on how short my hair is these days. He had no idea I'd been sick and that was a nice change.

Maybe if I describe the things I did tonight that were forbidden for so many months. Going to a public place, shaking hands, hugging, eating food from a buffet, drinking from a cooler, using pepper on my food, enjoying cake cut by someone else. If you look at the list backwards, it is a clue to life on the inside. All food prepared on-site. Bottled water. No leftovers. Tonight was just a big treat. Monday night I ate chips from a huge community bowl; a real luxury.

Standing and chatting tonight was fun and I am grateful I had the strength to do it. My feet hurt but I wore my hiking boots and they are good support. I am probably boring my readers but it was a really fantastic evening for me. When I take one day at a time I don't think so much about what I cannot do. But when I can do it, I marvel at my good fortune.

I retired two pills this week. Dropping the empty V-fend bottle into the trash was a ceremony. Parking the Urdosiol bottle in the unused cabinet was the opening ritual. The vitamins I take now exceed the prescription drugs I take. Even vitamins are parsed out in this recovery. I ask permission to take them and get a lot of no's. So far I can take calcium/vitamin D, B-6, and a B complex. No multi-vitamin. No E or K or any of that wild stuff.

My body hurts quite a bit as I do normal daily activities. I'm still building strength and muscle tone. I have to pace myself and do the most important thing first. For example making sugar cookies has been on the list for 3 days and the ingredients are in a neat pile on my counter. But I put it off in favor of more important things like laundry and errands and work and cooking; then when I have time to make cookies my feet hurt too much and I choose to sit down instead. Tomorrow? cookies first.

My circadian clock seems to reset regularly from sleeping 9-5 to 11-7 or even 8. I hope that it settles eventually into the earlier mode but I guess with all the changes going on right now it's logical that my sleep would change too.

I will close by telling you that I am enjoying a kahlua and cream as I write. A simple pleasure to enjoy occasionally. Dr. McGuirk said "no scotch" so I am abiding by his rules.

~Cathi

Baby Steps to Giant Steps

Suddenly it seems the speed of my recovery is snowballing. Yesterday at the clinic I saw Dr. McGuirk who kept saying "you look really great!"

I feel pretty damn good, not just physically, but psychologically too.

Two weeks til I visit the clinic again. I have not gone 7 days without seeing a doctor since July, 2008. This will be a real treat. Next Tuesday I do have an appointment though, to get my teeth cleaned. Oral hygiene is an odd thing during treatment for blood cancer. They don't want you to floss when platelets are less than 50, so for much of the last 18 months, no flossing. (This is because of the risk of bleeding.) No brushing at certain times, I can't remember why. I had a sponge on a stick that I dipped in a fluid that tasted a little like fluoride, not abrasive at all, that sort of freshened my mouth. So getting a full fledged teeth cleaning is going to be a real treat.

I went with Annie, my daughter-in-law, for a manicure-pedicure in Chicago which was just divine. I must find a place in Kansas City with that kind of treatment. Dr. McGuirk looked at my nails yesterday like he always does and exclaimed "they're polished!" I did not feel one bit bad. The scruffy part of my nails is nearly grown out. As a result of the chemo they turned a bit yellow and then became increasingly flaky as they grew out. The good news? The ridges I had before are gone too! A fresh start.

Another fresh start that hadn't occurred to me was immunizations. When I lost my bone marrow I lost my childhood immunity. So yesterday I received five vaccinations. For polio, diphtheria-pertussis-tetanus, pneumonia, hepatitis and a flu vaccine given to babies. As a regular camper and outdoors person I always had a tetanus shot annually. I'm happy to be well enough to be immunized! This does not mean I must avoid immune suppressed patients. Only persons who receive the nasal flu vaccine must avoid immune suppressed patients.

After tomorrow I will be taking two less pills per day. The anti-fungal and the corresponding liver saver on the theory that the anti-fungal causes the liver enzymes to rise. It has been one year since I had pneumonia. The anti-fungal drug is aimed at fungal pneumonia, which was the medical team's best guess at the cause of my pneumonia though they were never able to identify a fungus from the many cultures. I spent the entire month of February 2009 in the hospital very sick with pneumonia. I think that is the single event that extended my recovery period and there are still some effects from it. There is scar tissue that causes some pleuritic sort of pain when I expand my lungs for a deep breath. Dr. McGuirk's solution for that is exercise, exercise, exercise. Deep breaths. Break up the scar tissue. So cold be damned, I shall put on my boots and start walking. "Are ya ready boots?"

I should mention that my lungs look much much better than anyone ever expected. One time last year after a particularly positive CT Scan Dr. Aljitawi said "you are the miracle girl!" A happy title.

My counts yesterday were still rising. Platelets 105 (normal is 150), Hg 9.0 (normal 11-14) and WBC 5.1 (that's normal!) The booster and the Revlimid are still ammo in reserve.

I asked about overseas travel and Dr. McGuirk said "oh get real" and I said "maybe Italy in October?" He replied "October? Oh sure that will be fine. Where in Italy?" "Florence." "My sister used to live there. She worked in the Uffizi Gallery." Very fine. A vacation to plan.

My trip to Chicago was excellent. Conor and Annie are terrific hosts. I slept good--without drugs. And I feel like I know little Harrison a little bit better. Getting to know him and make up for lost time. I was disappointed that I am no stronger in Chicago than I am in Kansas City but I figured out how to carry him up and down stairs safely. Certainly I was way stronger than just a month ago at Christmas. I could pick him up and swing him, so next time I go I will be ready to schlep him anywhere. I am signing on to be the chief cook and bottle washer after the next baby comes in May.

Finally, many people have asked me if I will continue keeping the blog. Yes I will. I think my recovery is just getting rolling and there are still many changes to come. I want to write about some events that haven't made it to the blog during this time of itinerant posts. I am looking forward to having more privileges, one by one. And I will be writing about the experiences in this blog so stay tuned.
~Cathi

An unexpected privilege

At the moment I am in the airport waiting on my flight to Chicago. I'm looking forward to having a fine time with Harrison and Conor and Annie. I will be able to take care of HB, play with him, bathe him and even change his diaper which has been off limits til now. yuk yuk.

At the clinic yesterday I saw Julie who just about did back flips over my rising counts. My hemoglobin was 9.1 Nine would be a milestone. I probably won't recognize the number if it gets much higher. I used to be so happy when it was 9 or over before I got sick.

Julie gave me another drug that should help the tingling in my feet. When they only tingle and don't swell, they are not so painful. I hope that not swelling is because my counts are going up. Yesterday I was able to come home and do quite a bit of housework without my feet giving out on me.

I am still trying to make my house more cozy by restoring order, hanging pictures, sofa pillows and other little items. Currently I have some extra furniture in the front room that will be hauled to Lawrence to my nephew. Said nephew's house burned down the first day of finals in December. KU was extraordinarily helpful to him and his roommates and they were able to reassemble class notes and study materials to finish the semester. The Red Cross also helped the 3 boys. But he is looking for furniture and I have some to give him.

Julie scheduled a bone marrow biopsy for March 2nd. I had a long list of reasons why this was a good idea, but she said "If you're nervous about it, we can do it earlier than 90 days." So I'm happy about that. It would be tripping the light fantastic to have two good biopsies in a row, but I have no reason to think the next one will not be the same "no evidence of host cells."

I am working less than I was and seem to have found a good pace. I'm getting anxious to get out and talk to more people about what's going on in the world of IT. My upstairs office is very nice and I like the setup. I need to get real desks in there with keyboard trays so that my arms don't get used up.

Privileges. My platelets yesterday were 84. That's high enough to fly, to get my eye fixed, and to have sex. The latter was not on my list of things I really wanted to do...it takes two, right?

Now they're calling my flight and I'm off to Chi-town.
~Cathi

One less pill

Last night when I finished measuring out all the pills I threw one bottle in the trash. Of course tonight I set one aside to be refilled. But I like taking fewer pills. Tonight when I was opening bottles it felt like I wasn't finished.

My counts on Tuesday included a lot more normal levels on the chemistry report. Sodium and calcium have been stubbornly low but Tuesday both were in the normal range, just barely but in the range is good.

Wednesday I was all pumped up and excited so I went shopping. I checked out a store that opened while I was sick and strolled through Costco which I have not been able to do for a very long time. I skipped the grocery store because my feet hurt so much, but managed to go buy a celebratory charm for my bracelet. The result of all this shopping was a couple of days on the couch. I have a lot more energy than my feet can stand. This afternoon I have finally been able to stand up without wincing.

I'm working out how much walking and standing I can tolerate. Do I measure it in time or distance? Minutes or hours? Feet or miles? My feet don't seem to have a 2 minute warning signal, more like the penalty whistle in a hockey game. I feel fine, I get in the car to go to the next place and my feet blow the whistle. If I get in the box before the whistle blows can I take the two minutes then go back out?

I am still working a little bit, mostly as an advisor though there are some things I can do from home. I have a new business plan in the works. I had a chair massage today. I have a teeth cleaning scheduled for February. I'll be getting a pedicure before I go to Chicago next Wednesday.

~Cathi

Pedicure and massage and the dentist

I saw Dr. Ganguly at the clinic yesterday and it was kind of odd. He came into the room, most business like as always. I had to adjust from expecting a happy grin to on with the show. He did finally look up and pause and say "yes this is exciting."

My counts were good. White cells are in the normal range now. Hg is 8.4 and Platelets 68. One liver count (out of 4) is still elevated but no one seems too worried about that.

My appointments have been stretched out to once a week. (I'll be visiting Chicago next week.)

When I finish taking my current prescriptions of Levaquin (anti-sinus infection-biotic) and V-fend (very expensive anti-fungal) I do not have to refill them. I will keep taking Acyclovir (anti-viral) and Dapsone (pneumonia anti-biotic) until June, the one year anniversary of my last transplant. February will mark one year without pneumonia.

They will do a biopsy in March (3 months) unless something indicates one is necessary before that. If the chimerism still shows "no evidence of host cells" we will relax a little bit. The doctors are not taking Revlimid off the options, but they're not sure if or when or how much.

They believe the 2 weeks of Revlimid did the job of conquering the 5q- so that Walt's cells could take over. Isn't that amazing? Revlimid, and other drugs derived from Thalidomide, are working wonders in the world of blood cancers and bone marrow disorders. I will have another biopsy in June at the 1 year mark.

I am still taking a drug for my elevated liver enzymes which is a little bit of graft v. host. My feet tingle and even hurt sometimes, an effect of the chemo which may or may not go away. But I feel very good. Have lots of energy and am working a little bit.

The boy scout troop asked me to deliver the charge to 8 new eagle scouts at the eagle court of honor Sunday. I am honored and excited. I’m going to talk about gratitude and persistence. I think I have those things in common with Eagle Scouts. However, I must find my uniform and see if it fits. I can't remember if I kept those britches that were too tight or if I'll need a new pair. This is the result of putting my life into trash bags in the garage and then restoring it. Nothing ever is the same.

I didn’t get a lot of privileges I was hoping for but I can get my teeth cleaned and have a pedicure and a massage. I have even scheduled a chair massage for Friday morning. I cannot have house plants, pets, or fresh flowers. And I cannot paint a room or hike in the woods. Some of these things will come at the one year mark. Others as the blood count numbers indicate it's safe.

The new photo is from the first day I dressed in work clothes to visit a client. I felt really good. The red sweater vest is one of those things that was in my closet that I didn't remember buying. As you can see I found a use for it.

~Cathi