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