Pumpkins and the house on Craig Dr.

I'm comfortable at M&D's house, but I spent the weekend at my house. I had a fabulous time. I was really nervous about going to bed Friday night. I had a little headache. And the last time I stayed at my house I woke up terribly sick and spent over a month in the hospital. Happily I woke up healthy. Peggy stayed with me Friday night and Mark came up Saturday and stayed the rest of the weekend.

Friday I went to lunch with my friend, Lisa, whose wedding I was in last May. Just like a regular person!

Mark installed my new dishwasher (Kenmore Elite) and hung a second railing on the steps so I can get up and down easier. And yes, I have continued to go up and down the stairs at M&D's 5x most days. I am going to make sure Dr. McGuirk knows this flight of stairs has 14 steps instead of the usual 11. I think that should count.

Sunday, Mark and I went to Louisburg Cider Mill to partake of some fun, cider and donuts. I actually had root beer--nothing unpasteurized yet. The place was packed with kids and pumpkins and straw bales and I really enjoyed watching them. Conor and Annie took Harrison to the pumpkin patch Sunday too, so I'm posting two photos here, Mark and Harrison in the pumpkin patches.























No photos of me yet but the fat face is getting closer to normal. PT was today and we worked on balance. I have just about none. So now I have a list of "exercises" to do to improve my balance. No hair to speak of.

I looked for some specific things at my house unsuccessfully. I remember Dad telling me when they finished neutering my house, "your entire life is in bags in the garage." Mom and my sisters have put a lot of it back in the house, but there are still quite a few bags out there. Hopefully one of them has a quilt top that I started in the 80s. And one has my favorite goto recipes.

Tomorrow I go to the clinic. I've no idea what I will find out but I'd like to know there is more information coming my way. Look for news.

~Cathi

5x without stopping....

I climbed the stairs 5x without stopping. Holy cow. I could hardly walk the rest of the day.

Today I had physical therapy AND climbed the stairs 5x without stopping. Good grief.

Two days without prednisone have also been two days without insulin. My blood sugar went to normal levels almost immediately.

I also have pain that McGuirk called graft v. host before the prednisone squelched it. So the GVH is still in there...a hopeful sign. It's not so bad that I want pain killers.

Sleep is not so good but my sisters who lived through my getting off steroids last summer will be disappointed to know I'm not doing or saying anything crazy, just lying awake. Mom has been reminding me of some of them. I think Mari pulled the straw for the worst night where I apparently attempted impossible things like moving beyond the reach of the IV pole without moving the pole.

I am looking forward to spending this weekend at my house. My friend Peggy and my son Mark are pulling the duty to look after me. I have a list of things for Mark to do for me--I hope he gets through it all!

I am moving forward with my 100% donor marrow as if it is an actual 100%. I think that acting healthy and well will lead my body to the healthiest spot. When I put on my dew rag in the mornings I imagine myself in Nedra's sidecar, the two of us riding wickedly through Oklahoma City. It makes me laugh.

~C

100 day results - a mixed bag

I saw Dr. McGuirk this morning at the clinic and he was bursting with the news that my chimerism was 100% donor. "Well 92.8% but that's 100% because there is a 1.2% margin of error." The entire clinic was dancing. Even the cleaning ladies were hugging me (a sure sign I've been there too long.)

It was a celebratory morning. Lots of privileges like road trips and hotels and staying with other people as long as they aren't sick. Even said I could live alone. Dad could work in his shop. No gardening, but movement!

He went on to say he had asked for the determination of 5q- and didn't have those results yet but to call him this afternoon and he would have them. So Mom and I went to the Starbucks drive-through for what has become the traditional celebratory drink (tall soy latte, hers with carmel) and to the grocery store. For the first time I went into the grocery store without a mask and could carry my coffee with me...a lot of freedom.

The phone rang as we were checking out and it was the clinic. Dr. McGuirk told me that there was still 14% 5q- cells. "Stop the steroids, start tapering the immune suppressant. We'll get it," he said with confidence.

So over the rest of the afternoon I've gone from tears to cheers to fears and back again. Here is (with apologies to Paul Harvey) the rest of the story.

The actual explanation is 14% of the .8% Cathi cells remaining in my bone marrow have 5q-. Dad has worked that out to 99.9112% (or something) healthy cells which is a nice number. ("5q-" is the bone marrow disorder I had for years before it converted to Leukemia which it wasn't supposed to do, but life has a way of happening.)

The plan is to immediately begin tapering off the immune suppressant drugs to allow Walt's cells the freedom to overtake the last .8% of Cathi cells left. On the up side, to taper off the immune suppressants I have to stop all the steroids. So muscle building here I come!

We still have options. and options have been good to us this time around. One option in the transplant protocol this time around was to taper the immune suppressants very early in the game (like day 42) to incite graft vs. host disease. We didn't have to do that because I developed a good case of graft vs. host right from the transplant. A good case of graft vs. host is a good omen for longer term survival. So we have that in the can. A good case of graft vs host will hammer the host cells when the immune suppressants go away.

We can get a leukocyte booster from Walt--essentially hit him up for some T-cells.

So this will be a watch and wait process with regular checkpoints. We're on safari looking for those 5q- cells floating around. We're energizing Walt's donor cells to knock 'em out. And we're maintaining a healthy body for the action to take place.

One of the things McGuirk said to do today was go up and down the stairs 5x without stopping. I'll be sure and let you know if that happens! holy cow!

~Cathi

I'll know it when I see it

Day 101. I don't know what I'm counting now. I guess I am just continuing to exercise and get stronger. Take all the meds and stay healthy. Count carbs and keep the blood sugar somewhat even.

The goal might be somewhat like "I'll know it when I see it."

I went to Sears and bought a new dishwasher for my house. One that has a stainless steel interior so it gets real hot and sanitizes the dishes. I promise I will never look at cleanliness the same way again. Will I be able to go anywhere without disinfectant wipes? I dunno. I sure can't go an hour without washing my hands. Every hour "drink a glass of water", "wash your hands."

I also spent some time working on this quilt I started somewhere about 1978 or 79. It's a beautiful quilt if somewhat dated by the color choices. I have a new dew rag straight from Sturgis, SD. Says "Biker Babe 2009" on it. Fits like a dream. I'm considering remodeling some of less well fitting scarves I have into a similar pattern.

And I picked up a David Sedaris book to pass the time. Time on the treadmill, time in the chair, time. I still have idle time. But choices are good. It's great to have choices.

~Cathi

Day 100 - second time around

Today is Day 100. October 7th. 100 days from the 2nd transplant on June 29, 2009.

I've been through all the appointments at the clinic and the hospital. We are all most anxious to hear the results of the bone marrow biopsy, but it will be at least a week before those results start to trickle in. I have an appointment on the 21st to get results of today's tests, but I hope to get some clues at my next clinic appt on Oct 13th. The only thing I have an idea about after today is the pulmonary function test which went fine.

Meantime, I've developed a sinus infection. Dr. Abhyankar asked me yesterday "what do you have in the home pharmacy for the sinus infection?" ha ha... Not surprisingly, I had a couple of options. The daily pill bundle promises to get smaller and smaller though. I can stop taking one when the prednisone goes, another a couple weeks after the prednisone, etc.

I've continued walking a lot and the physical therapy resumed this week. She has me putting weights on my ankles and doing some things with the left rotator cuff damaged by the PICC line.

I am exhausted by the sinus infection. I am spending my time shopping on-line, but not buying anything, and working crosswords.

~Cathi

Looking Up!

Not only is my outlook brightening, but my body is feeling better too. Mom came home from Paris with guns ablazing and she has been shooting my feet making me exercise, exercise, get outside, treadmill, go anywhere she can think of. She has also been following all my physical symptoms closely and making suggestions. She is very hard to ignore. (Treadmill music - "Gershwin plays Gershwin.")


So the result is I can tell I am gaining strength in my legs, and I've had a few days where my stomach wasn't sour all day. A sour stomach makes it difficult to eat, to move, to do anything. I just want to get comfortable in the recliner and not move. Dad is in his hometown of Winfield for a few days and I've even been cooking for Mom and I!


I can't tell you how great it feels to walk outside. I am still wobbly enough that I have to hold someone's hand for the trek around the cul-de-sac, but a little 15 minute spin really clears my head. I begin to believe I will be able to camp in the wilderness for a few days in the future. Speaking of wilderness, I watched all 12 hours of the National Park film by Ken Burns this week. The history was fascinating. I think of all the people who were personally moved by John Muir and described in the movie, and I wonder how many more people he encountered who didn't go on to become movers and shakers but were still convinced that National Parks were a good idea.


I ended up at the clinic this morning unexpectedly because my blood sugar reached a threshold level. They changed the sliding scale dose for insulin and gave me some more "education" about diabetes. I ask questions sometimes about how I miss these "educations" and the nurses all say "but you're smart--you just know this stuff." Well apparently diabetes, even the temporary kind, dulls one's brain. One thing I did read in the literature that I carted home was that it can cause depression. So I'm blaming the recent long funk on blood sugar, and the more recent uptick on managing it.


The blood sugar should level out post prednisone, which I will be taking through the 1st week of Nov. The high blood pressure is leveling out now with meds, but I think it is caused by Prograf, the immune suppressant I take and will likely take through the end of the year.


One field trip Mom dreamed up this week was to Nebraska Furniture Mart. We got there at the opening bell Friday morning and checked out couches. Hardly anyone around. I found a couch but I have some time to decide if I'm going to buy it. But it was great fun shopping and measuring and sitting. One the way out, we wandered through the lamps and I found a funky floor model marked way down that they marked down more at the register so I felt like that was a steal. (Nothing like the garage sale steals my sisters report every week, but satisfying to me.)


I checked out the Sunday paper ads today looking for a mullet wig since Barry had some trouble with the term. I didn't see that specific description, nor for that matter did I see a mullet wig. But think Elvis. Lump on top + lump in the back= mullet.



For some early trick or treat exposure the doctors at the clinic held a scooter race to raise money for the Light the Night walk, a fundraiser for the Leukemia and Lymphoma society. They dressed up, Dr. Abhyankar arrived on the back of motorcycle wearing a bicycle helmet, a black cape and cigarette in his mouth. They raced in heats and Dr. Abhyankar won the crown of Dr. Speed. In this photo, they are left to right Ganguly, Abhyankar, Aljitawi and McGuirk. My team. They are the primo doctors in this field and they believe in me.

The PICC line is OUT!!!!

The PICC line came out yesterday. Unexpectedly. Happily. Whoosh, whoosh. Mary came in to change the dressing and Dr. McGuirk said "let's just get it out of there!" Despite having to spend all day at the clinic because I did need some minerals, I did not care.

Taking a shower today without wrapping my arm in Glad Press 'n Seal was a real pleasure. I only had to dry off once. With the Glad wrap I dried off, then peeled off, then dried again, the drips from underneath the wrap.

And the ongoing problems I've had with the movement of my left arm, relative to the rotator cuff are clearing up quickly. As soon as they pulled the line I could lift my arm in the direction I had not been able to. It will take a while to regain strength, but I have patience.

So big milestone.

I've also started taking insulin for high blood sugar. This is a hopefully temporary thing until I get off the prednisone completely. This is such a weird new experience that I don't have much comment on it now.

Today I walked outside twice, just around the cloverleaf cul de sac where I'm living right now. I've been encouraged to get out more. Not that I can really go anywhere, but the weather is particularly beautiful and as long as I don't step (and roll) on any dropping walnuts, I'm fine. Very shaky and I hold hands with a guide for the trek.

I'm expecting the return of my sense of humor any day now too.
~Cathi

Sideburns and Sidewalls

Taking prednisone for a long period of time is full of new surprises all the time. I now have sideburns. ugh. I can't really cover them up with my hats and dew rags without producing loud and continuous feedback from my hearing aids.

My hearing aids need to be replaced but I can't go to the places of my choice because of the possibility of GERMS. And I'm not sure that would help in this case anyway. You cover up the holes in the hearing aid, you get feedback.

To shave or not to shave? Should I have to make this choice? My eyebrows already rival Andy Rooney's, though they are still dark rather the shaggy gray he has chosen to sport.

Moving on up my head, I still have sidewalls. No hair on the sides. A sort of wide mohawk starting from my prominent widow's peak in the center of my forehead. Normally this widow's peak is an attractive feature of my hairline. Now it is merely the starting point for a Micky Mouse cap-like frame for my moon face.

Folks have been commenting "you have hair!" I had no idea it was creeping down the sides of my face, soon to be Elvis-like in appearance. Perhaps this calls for some of those shiny, chrome sunglasses Elvis was so fond of. Perhaps it calls for a mullet wig.

I'm wondering if I can produce a white cape in this season of costumes and goblins. I wonder what the children trick or treating would make of an emaciated looking Elvis dishing out their candy--or bananas and peanut butter with a side of bacon.

ha ha. I make myself laugh. I did have a Red Robin burger last night and it was tasty and juicy and full of fat. I even indulged in a few french fries.

Saturday was a beautiful day and my friends Debbie and Ernie came up and took me to the garden center open house. Debbie had photos of her yard and a landscape designer helped her choose the right tree for the right place, then we bought a new shrub for my yard which they planted for me. Ernie cut the wild rose completely back, including dismantling the trellis, loaded up all the debris in the truck and hauled it off. Meanwhile we had a picnic on the deck at my house which was delicious. I felt good all day Saturday too. No sour stomach which seems to be almost constant these days. A wonderful day.

Mom had to spend an extra night in Paris and will not arrive home until tonight. Something about the plane and delays, then cancellations.

I feel good today and Lori is here cleaning one more time before Mom comes home. So I'm going to take some time to see if I should dress up as Elvis or Mickey Mouse.

Cathi

Ennui

I think that perhaps if I posted to this blog more often right now I might cheer myself up a little better. As it is I seem to have a serious case of ennui as much as all the physical things going on.

It's been a fun and busy week with all the different caretakers coming in to stay and spoil me. A big visit with Harrison Thursday afternoon! Friends coming later today to do some yardwork at my house and have a picnic. Mom has called a couple of times from Paris and all is going well over there.

Yesterday I got permission to eat carry out food so indulged in some Pad Thai from Bo Lings last night--Thanks to Janice and Chuck. Lotsa fat! I'm still craving a big juicy Red Robin burger but that will have to wait a day or so I think. I've done a little bit of cooking around here and we have some awesome leftovers too.

Things that are keeping me off balance are the annoying diarhea, but my blood pressure has risen dramatically over the last 10 days so I started medication for that last night. And my blood sugar has been too high for too long to ignore so I will be starting insulin as soon as the docs and pharmacists agree on one. The prednisone and the immune suppressant drugs are the culprits in the blood pressure and the blood sugar. So as they go away so should these other symptoms. I don't notice the blood pressure really, but the blood sugar going wonky can really give me the shakes. Coupled with weakened legs and hips this seems like a good time to sit in the chair and do very little.

I've continued walking on the treadmill and can successfully walk for 13-15 minutes if I don't set it too fast! LOL (Imagine the skinniest Cathi Maynard you can loping on the treadmill...no grace about it!)

So Harrison is 10 mos old now and a beautiful baby. Plus he is really well behaved. Take it from his Gram who knows these things. He has the bluest eyes. It took him a while to warm up to me (his mom says that's because I'm not a man) but we got to play. His Dad was here for bar-b-q and Harrison LOVED the cheesy potatoes from JackStack. They are off to a wedding in Topeka for Annie's childhood friend and then early Sunday return to Chicago.

Being flu season, everyone is extra vigilant about germs and things and I appreciate that. I'm afraid it's going to be that way for a while. The clinic ran Dad out yesterday because he has a cold--he had to wait in a common area for me. I am careful to wear my mask when I am out and covered up with a smock to play with Harrison.

I am impatient and a little nervous about the results of the testing on October 7th. All my counts have been great. I haven't had any transfusions since the first weeks after the transplant and this augurs well for 100% donor chimerism on Oct 7th. I'm sort of keeping my emotions tamped down, my life on hold, in suspension waiting for that date and those results. I don't want to think about any option besides success. The medical team is optimistic and excited.

So I think I'm going to stop there and try to get into really living this day. Choosing a shrub, directing the work in my yard. Enjoy some time at my house. Get my head in a different place.
~Cathi

Some cheese to go with that whine?

It's been a rough weekend; and I'm not talking about football. I've had the runs, my stomach has been upset, sorta takes the git up and go outta me. and I'm going to whine.

My vision is blurry, my hearing not up to usual. This is the prednisone and/or dry eyes. I have some artificial tears which don't seem to make enough difference to matter. There is very little hair on my head so I wear some kind of hat all the time to keep from sticking to the back of the chair. Sometimes the hat is hot or uncomfortable or both. And I have hot flashes which make my entire back stick to the chair!

My feet tingle. This varies by the day and night. Sometimes at night the tops tingle so much it keeps me awake. It feels sort of like cold but more covers don't make it warm. I wear socks to bed and put a quilt over my feet. The extra weight from the quilt seems to help. But really it's better when for whatever reason, the tingling subsides. This is from the chemo and may or may not go away.

Food tastes funny. And it depends on the day too. Right now I have a new box of Christopher Elbow chocolates and chocolate does not sound good at all. The funny taste goes for drinks too. Water sometimes just will not go down. I switch to Gatorade or Crystal Light then. But still I can't seem to drink enough.

I have a lot of trouble sleeping. I'm nervous of too many drugs but I try a lot of different things to get some sleep. Sometimes I can't sleep because I'm sick--I spend a lot of time in the bathroom or something. Sometimes I just can't sleep. I try reading and crosswords but refer to the blurry vision (which also applies to the closed captions on the TV.)

I still can't seem to eat much fresh food without consequences in my gut. I got a new scrip today which seems to be helping but it tastes totally nasty. It's something mixed in corn oil and it's hard to get the taste out of my mouth.

My left shoulder and arm don't work right. I can't lift any real weight with it. I think this is because of the PICC line and the blood clots; the docs think there might be some damage to my rotator cuff, which of course can't be dealt with til this is all over.

I take a slew of pills. Granted this is much easier now than it was fresh out of the hospital. In reality I don't gag anymore. Nevertheless, I dread taking them just as much. The physical memory of the gagging has not gone away. Adding this oil stuff is just appalling.

My blood sugar is erratic. I'll be asking about that tomorrow. My blood pressure is high, and normally it's very low. This could be the current drug regime or it could be the prednisone.

I am still isolated and restricted. I can't go where there are crowds and dirt. Everyone who comes in here has to be vetted. I don't have much energy to go anyway. I am missing weddings and birthdays and parties and new restaurants and plays in the theatres.

And that's just how I feel today. Out of energy. I'm not out of optimism even though this is a bag of whining. My friend Sharlyne was here yesterday afternoon and spent the night and was good company. Friend Sally brought supper over with lots of treats. Brother Walt is coming to spend the night tonight. Sistah Trish is coming tomorrow and spending the night. I am sure that coupled with getting my gut settled down, these new faces will freshen my outlook.

normal is flossing

Friday again and I've not updated. I spent yesterday at the clinic unexpectedly, after two nights of diarhea. I was tired from being up at night, a little bit dehydrated, and just felt bad. But I got some fluids and some rest and feel like a new woman today.

I had to cancel PT yesterday so will reschedule that for next week. I have been doing the exercises though you can't tell it from any strength gain. sigh.

On Tuesday this week I saw Dr. Abhyankar and he spent a lot of time with me. He explained that this is how it is when taking prednisone. You work to exercise and the prednisone takes it away. It works on your hips and thighs especially. He said again and again "You are doing really great!" Reminded me that I had a tough time with the transplant (I didn't know any better) and that I am doing the right things by exercising and getting out. But it's hard to gain weight while taking prednizone (even though my face looks like the Pillsbury Doughboy.) He gave me a scrip for Fosamax to slow the bone loss from the prednisone.

Yesterday nurse Amy told me they expect patients to look like me, to recover slowly like me. Even though it seems very slow to me, it's what they expect. So all in all a good report. Just have to slow my expectations.

Now, about normal. Normal is flossing. I've been able to floss my teeth for a while now that my platelets are staying at 50k and above. Soon it will be eating anything I want. Someday it will be wearing clothes that fit. I'm a ways from normal but I have today and today's "normal."

My cousins and my friends are in Winfield this weekend at the Bluegrass Festival. Next year, when I'm back to normal, I'll be there with them.

Cathi

Normal -- YIKES!

I've been away from the computer this week mainly because I don't know what to say. I'm feeling pretty good, still weak, but no real pain. I had an odd headache pain last weekend that turned out to be lack of hydration but am drinking copious amounts of water now to make sure that doesn't happen again.

The blood counts are good. Actually the white count is even doing what it's supposed to. When I had the headache it went up to 10 and when it went away it went back down to 5 or 6, which is normal. Platelets are rising and hemoglobin is holding steady. All good omens.

I started physical therapy yesterday. It's going to take about 4x the energy to get results equal to a non-steroid body. I'm hoping that when I get to the end of the steroids that all the muscle work is just "there" like all the sudden my bottom will be round again. LOL

The nurses are all talking about "when I get back to normal" and frankly, it's scary. I've been sick and isolated for so long that I'm a little uneasy thinking about complete recovery and getting back to a normal life. Even though that is what I can expect at this point. It will be close to the end of the year again before I get completely free, and back to my own house and work.

I guess I'm also a little bit afraid to hope; to count on this. Even though it's the next logical step. and my position since I first got sick was to put my head down and do the next thing that's indicated. Count on the prayers and support from my family and friends and just do what's in front of me to do. Perhaps it's been so long that I need some retraining on what being healthy looks like and feels like. Perhaps a little meditation.

Meanwhile I have discovered Gordon Ramsay on the BBC channel and am enjoying the heck out of his shows. Mom is headed for Paris with a girlfriend next weekend for a week. I go to the grocery store about once a week, got permission to visit the Nelson, and walk the treadmill at least once a day.

So I'll try to update more regularly as I come to terms with "getting back to normal."

Hopscotch vs. Dodge Ball

Today is a pretty good day. I haven't slept all day like I seem to have the rest of the week. No clinic visit so I'm free to set my agenda. And my stomach is better, not so uneasy as it's been. I hope this is from the different drug that Dr. Ganguly gave me yesterday. It's one I took in the hospital that got taken off the list, but designed to deal with graft vs. host in the gut.

It seems like every day is a new day. Every day I start from the same place, no gains left from the day before. I'm only clocking 5 minutes on the treadmill right now. And sometimes only once a day.

Last night I wondered if it was just depression. Lethargy and disinterest that go along with that. Today I feel better. I started taking Effexor this week again. They prescribe it for hot flashes, but I'm sure I benefit from the anti-depressant action as well.

Food still doesn't taste right, or even good all the time. Drinks are particularly annoying. I'd love to have a nice diet coke but it doesn't even taste like coke. Juice and gatorade, neither of which is enough calories to matter.

So the card of the day was Hopscotch Days vs. Dodge Ball days. I'm looking for more Hopscotch days.

Yesterday I had a meltdown. I got on the scale at the clinic and it claimed I had lost 6 pounds. I started crying and pretty much didn't stop except when I was sleeping. I have been feeling so tired and just not great that it all came crashing in. I have been diligent about protein drinks and shakes and was confident that my weight would be inching up. I took a bed for the day instead of a recliner and just cried it out. I made an appointment to go back and see the psychologist yesterday afternoon.

So the psychologist marvelled at how far I've come and said I was doing all the right things. I vomited on the way home, and again last night. And the blood work returned a positive for the CMV virus. After a dose of antibiotic last night I felt like a new woman today. Nurse Wendy says the CMV is the reason I felt so low and I think she's right.

The nurses at the clinic knew I was feeling low and they were lined up to give me a hug, tell me I was doing great, don't lose faith. How cool is that? They also universally dissed the scale...the problem is the scale. Weigh on a different one next time.

So from not moving from the chair for a couple of days, I got out and went to the grocery store today. How sweet it was. I bought myself some candy corn to celebrate the season. And some other junk food besides Heniz 57 sauce which I haven't been able to get on Mom's list for several weeks.

The psychologist told me to do everything they tell me I can do. So walk outside, go to the grocery store. The trouble is they give and they take away these privileges. It's hard to know what's okay to do...but the grocery store was fun.

Today the world doesn't look so blue. It's still a very long recovery ahead, but just feeling better makes it easier to climb the stairs. I downloaded an iTunes playlist for a cocktail party. I'm going to see how that makes me feel while walking on the treadmill.

~Cathi