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