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

Dip and Sway

Tuesday felt more like a crash than a dip and sway, but I'm trying to stay realistic here. I woke up early in the clutches of the toilet with a low fever. Spent the day at the clinic getting fluids and TLC. Had to make a run to the hospital in the afternoon for a ct scan of my abdomen. Conclusion? no more fresh tomatoes. We followed all instructions for washing and peeling, and oh they tasted soooo good. But my stomach objected.

However the day really took the vinegar out of me. I've been sleeping mostly since then. Finally got on the treadmill for a few minutes this morning. This afternoon I'm just hanging out in my room, catching up on correspondence. And watching television while browsing the internet for useless information.

No infection is a good thing. Not only did I escape the consequences, but presumably the bone mararow is doing some work like it should be. I'm going back to the very careful, everything cooked diet for a while. There is time to get adventurous.

Meanwhile a couple of friends have kids with swine flu! All I had to worry about when I went off to college was the "freshman 15" but these kids are confronted with a nasty variety of the flu. And my doctors are insistent that I see no one who has been exposed to it. Knowingly. They wouldn't give a time span for clearance, nothing. "Just say no" I suppose things will ease up when the vaccine is finally available but that won't be for a while. They have been worried about it since it surfaced last spring.

I have been spending a lot of time thinking about life after isolation and wondering how it will be. Lonely at my house with no dogs. Stay out of the sunshine: sometimes interpreted as stay out, others as don't get burned. And wondering how long before I stop looking over my shoulder or worrying about every cough. I know that even once I am "released" that I will still have frequent visits to the clinic for the first year. I don't know how my re-entry into a regular life is going to go. I promise it's a little intimidating right now....balance or no.

I distract myself with things like "should I remodel and get laundry facilities on the 1st floor? Should I buy a loveseat or a short couch for that room? what's the difference? What about kitchen chairs? (I have none...I gave them to Mark when he graduated thinking about the big furniture shopping spree I would be going on.)

Cathi

Uneventful Clinic Visit

I waited til today to post so I could tell the results of my clinic visit, but it was pretty unremarkable. Everything status quo. I start tapering off the prednisone, but very very slowly and I will be on it past the 100 days. This suits me just fine. I am not about to complain.

With the "mini transplant" protocol that I had, even though the preparation this time was stronger, the risks are higher than with a full transplant but they gradually taper off to about the same over the first 6 months. So I'm happy to have everyone watching closely and happy to keep taking the drugs.

The clinic was not horribly busy this morning either so I had a chance to visit and catch up with some of the nurses and that was fun.

Debbie spent the weekend with me while Mom & Dad played with their kids and grandkids. They got to spend time with all the youngest grandkids, Walt's 2 children and Rhonda's 2 children and Lori's 2 youngest children. Everyone seems to have had a great time. Rhonda and kids stayed at Walt's house, M&D at a hotel.

Debbie cooked and cleaned and looked after me and I gained 5 pounds. We had good conversation and watched TV. Didn't leave the house. I had company on Saturday which wore me out but I slept very well Saturday night.

I feel good today. I remember waking up in the hospital day after day not feeling great at all and wishing for just one day when I could wake up feeling better than yesterday; now here it is. I have very little stamina, but feeling good goes a long ways. The doctor said this morning that I am good enough to be left alone for short periods now. I can get up and down and around by myself. I forget to count my blessings sometimes. Last summer I couldn't do any of this.

~Cathi

TGIF - Day 53

Back to the clinic this morning to see a provider. They were all absent yesterday! My counts were good, my weight was up and I got more privileges.

I can go to the grocery store if I wear a mask and go when it's not crowded.
I can eat take out food.
I can be outside with sunscreen and a big brim hat.

woo hoo! I haven't been in a grocery store in so long that is going to be a real treat!

I have chipmunk cheeks and chicken legs from the prednisone, but feeling good goes a long way. And besides I don't look so thin and poor. They will start tapering me off the prednisone next week. Hopefully none of the side effects in my gut reappear. Dr. Abhyankar was pleased with my progress. I have given up one pain patch and he suggested I might be ready to give up the second one. I'll see about that when the time comes.

Mom has just returned from the lake house and is making plans for the weekend when Debbie is coming to stay with me. I've done one trek on the treadmill and I may or may not do another. I'm looking forward to some different company for the weekend.

Just keep on trucking.
-Cathi

Feeling better

Today I felt noticeably better. I don't know if it's actual improvement or if it's due to cranking back up the prednizone but I'll take it.

Yesterday the full effect of the new dose of Prednizone kicked in and I was weepy all day, then didn't sleep good last night. I imagine sleeping is going to be the toughest part of this drug regimen. Fortunately the regimen includes other drugs for sleeping and relaxing and so on. Speaking of drugs, they are getting easier to take also.

This morning Dad and I ran errands and we went by the clinic to get some flushers (PICC line has to be flushed daily and we just ran out of supplies.) I stopped and weighed and I've gained 1 3/4 pounds since Monday. That felt great.

A scouter delivered some chicken and noodles Tuesday evening for supper and it tasted fabulous! Thank you Carolyn. It was the first thing that tasted good since this last round of chemo.

I've been able to do a few exercises on the Wii, and am still treadmilling. I'm not sure I'm ahead of the muscle decline but I'm doing my best. I'm traversing the stairs several times a day but still claiming a bathroom on the main floor.

I have really enjoyed everyone's comments on the blog about Hayward. This morning I remembered that now I can plant Black Eyed Susans in the backyard! I would plant them and he would eat the seed heads every year and they never came back. So perhaps I will have a new cutting garden next year.

So I feel more optimistic today. Looking forward to the clinic visit tomorrow to hear what the docs say. I'm only at the clinic twice a week now, typically Monday and Thursday. Hopefully we can keep it that way. So yes I have time to fill and so far I've been using it to plow through 7 weeks of personal and business mail.

This post seems a little disjointed. I'll blame that on the prednizone too.

Course Correction

The fever finally broke last night and I got a good night's sleep and have been up most of the day today. In my chair or on the couch, but awake.

I went to the clinic this morning and saw Dr. McGuirk. He took me off the daily antibiotic ramped up the prednizone again. He says what is going on in my gut is definitely graft vs. host and it's too soon to let go of the steroids. So instead of taking the last half a prednizone this morning, I took 6 of those babies today. Since I'm not sure how I feel now, I don't have any idea how I'll feel when this all kicks in.

So this changes the game plan a little bit. We're happy to have some graft vs. host, but internal gvh is the toughest to deal with. It takes some GVH to make a transplant stick and last time around I didn't have enough. So the protocol this time called for several changes designed to incite GVH. One was to wean me off the immune suppressant drugs earlier which we won't be doing. I'll be taking those drugs for the entire 100 days. They are the primary reason I must continue to be isolated.

I walked on the treadmill today til my body said I was finished. When I walk for only 2 minutes that is less walking than a turn around the hallway at the hospital. It makes me want more. I also need to get the Wii Fit into action again to work on my balance. Dr. McGuirk said the prednizone weakens your thighs quickly so it's important to keep up the working out.

I have eaten tons today, I swear. Constant eating. When I consider that nothing tastes like it should, this is a real accomplishment. But I must gain weight. Protein, protein, protein. Thank goodness I like beans.

Life is dull but comfortable. I don't have much energy but I'm not bored. I cannot remember if I have been here before--perhaps you guys can remind me. I just trust that as I gain more energy I will regain interests.

Cathi

Speedbump

I have been running a low grade fever since Friday afternoon. and sleeping.
Yesterday I spent all day in the hospital outpatient area getting fluids and tests.
I am taking seven days of an antibiotic, starting yesterday.
and sleeping.
so that is why you are not hearing from me. I can barely stay awake long enough to eat.

Never Underestimate Cathi Maynard

Dr. McGuirk came into the exam room at the clinic today with a new slogan. "Never underestimate Cathi Maynard" I like it.

I went to the clinic, promoted to the "exam" area. But I still had to enter through Limited Access and so I saw all my friends. The counts are all good. Dr. McGuirk was pleased. He encouraged me to just do 2 minutes on the treadmill. I do not have to return to the clinic until MONDAY. I must begin thinking seriously about what to put back into this empty life.

So I have been downstairs twice today and completed 7 minutes on the treadmill. It seems like a big deal to trek down those stairs and then back up but really, it's less time that I spent walking in the hall at the hospital.

However, going up the stairs requires muscles I haven't kept in shape. Think of picking up one foot to slip it into a shoe while balancing on the other. I'm not so good at that. But I've also been upstairs at least twice today so the strength will come.

Life at home is TIRING. Everything I do wears me out. From going to the bathroom to getting a drink. I'm wobbly at unexpected times, including carrying things. I don't nap very much but I'm sleeping good at night.

I'm eating a lot, but still with the help of regular Ativan. "Ativan is our friend" is a mantra amongst the BMT staff. I have a few more days of steroids and I am looking forward to getting away from those.

Mom keeps producing little bags of stuff to deal with. Mail, bills, cards, etc. I get through one pile and another one appears in my chair. 7-8 weeks of catching up is going to take some time.

Meanwhile no changes in the plan for a while. A friend suggested Rogaine to encourage my hair to regrow. Anyone know anything about that?

Cathi

Kicking back at home; and a big surprise

I finally arrived home about 5pm tonight and have been eating ever since. Little things. But it's different when you can browse the cabinet or the fridge and choose a little of this and a little of that. I ate beef soup for supper which is the first real meat I've had in several weeks. I sorted out the new list of pills and swallowed them all without immediate mishap.

I confess the pill taking seems to get harder and harder. I was delighted to double check the list tonight and figure out that one pill is only once daily and I took it this morning. I cut them up. I take them with applesauce or jello. I do my best and trust that the process will get easier. After all, I haven't lost my cookies for several days now.

Dr. Aljitawi came in this morning and before he said "you are for sure going home today" he said "your chimerism is 100% donor." I went sailing out of the bed and danced into his arms and everyone picked up phones and took pics. News I was not expecting.

This means that my bone marrow shows 100% Walt cells today, at day 44. This is really great news. The next work to do will be to wean me away from the immune suppressant drugs and hope that Walt's cells continue to claim dominance and mine continue to be absent. That is what happens over the next 55 days, until day 100 post transplant.

Every question I asked was answered with "100 days." No eating out, no grandbaby visits, no parties, wear a mask. 100 days. The way I feel right now, it will take until 100 days to feel whole again. I am wobbly on my feet, my strength is just barely enough to get around by myself. I have some rebuilding to do. I will start short treks on the treadmill tomorrow though I suspect that by the time I get down the stairs to the treadmill, I won't have a lot of extra energy for actually cranking that thing.

Start small. That would be getting up the stairs to bed tonight. I am certainly way way ahead of where I was physically after my first hospital stay. I am still staying at M&D's house for a while. Frankly, the idea of moving to my own house and living on my own again is a little bit scary. Or terrifying.

I have enjoyed a day of celebrating, but I understand that it's head down for the next 55 days so I'm getting my mind set. I'm going to be a winner at the end of this.

And because I need to know. the 100 day target.
October 8, 2009.
That's the goal.

Finally, I don't even go to the clinic until thursday and when I go I will be up front to see a provider. I won't be in the back getting treatment with all my friends. This is going to be really strange.

No pole - no transfusions

No more pole as of about 6pm this evening. I'm free, sorta. I can put both arms in the sleeves of my jacket. I can go to the bathroom without dragging the pole or worrying about unplugging it. Without unwinding tubes from the bed rails or whatever else they might be snagged on.

Yesterday morning they disconnected the oxygen and I've been comfortable without it.

Sometime over the weekend the IV nutrition was discontinued and I am gradually eating more and feeling less nauseous. I still wish I could pick up an ice cold glass of something and swig it down and have it taste great. Unfortunately things still don't taste 'normal.' Interestingly, the IV nutrition causes nausea and vomiting.

Sunday, Walt made a big chart on the white board that we called the "anti-vomitometer." It ticks off the hours without vomiting. I am now close to the 36 hour goal that we had. (Well there is only room on the board for 36 ticks.) No vomiting in 36 hours. I still keep the barf bin very handy but the peanut butter crackers this evening taste the way I would expect them to taste.

I haven't had a transfusion of blood products for 3-4 weeks. A date I didn't think to mark down. but basically I am transfusion independent.

And the goal now is home tomorrow. I've been cautioned to not get too excited and set on going home tomorrow, but I am so ready to be outta this joint.

A friend made an observation this evening from her own cancer experience. When she was diagnosed, she put her head down and did what had to be done and didn't think of anything else. One by one she completed the chemo treatments with spirits intact and not a lot of help from her friends. Because she didn't need it.

But when she went to the clinic for the last chemo treatment, the nurse came to tell her that they would not be able to do it because her counts were too low. Out of nowhere came torrents of tears and the insistence that they had to give it to her. The tears and upset surprised her totally. In hindsight, she theorized that she was holding herself together according to the plan but as she anticipated the end of her treatment her self control loosened because she wouldn't need it so much.

I can put this theory on my shoulders and feel comfortable wearing it. I have held it together, aimed straight ahead, done what had to be done and now as the end gets closer my grip is not as tight. I am crying more. I am not so afraid I think as just anxious. I am ready to go home to bed and just let go. Just be me. Not a cancer survivor or fighter. Just me.

I want to get a pedicure and have my eyebrows waxed. I want to take a bath in a tub. I want to get some paddling gear out and float for a couple of hours on a river. I want to go see "Mamma Mia" at Starlight theatre. These little goals have gradually moved into spots that were filled with go to Italy, visit Vermont, spend 2 weeks in Chicago getting to know Harrison. First the small ones. Then later, the bigger ones.

See you on the other side.

1 forward, 1 back

Marking time in other words.
I slept in the recliner last night, or tried to. Not much sleep but I did manage to get by without painkillers. I have a new Fentenyl patch which seems to be dulling the pain, or else the pain is improving on its own.
Today I have slept several times. A first this week, day time naps. I hope that I will sleep tonight and wake up a new woman.
I have eaten a little bit and not thrown up very much. One pill to be exact....but have kept down quite a bit of food.
I think the keys right now are sleep and food. I must get food to start staying down, including pills. Mom has been reading to me the "Guernsey Literary Society, et al" It is entertaining and she is a good reader. Besides just absolutely beautiful to watch.
I think I have the steroid psychosis on the run, or I wouldn't be able to sleep today. Had a web cam session with Harrison today. I look like a really sick old woman, to my dismay but I think the session was at my worst point today.
I have walked several times today. I'm very weak, but still making progress. My oxygen is about down to zippo but I still need it. The lungs are just not quite pulling enough on their own.
And that's the news that I'm fit to reveal. Except perhaps to tell you that Dr. Aljitawi and I had a happy hug when we saw each other this morning.
Cathi

An Inherent Distrust

Welcome to my 42nd day in the hospital. My 42nd day of a 5-6 day stay. Things seem to be going along okay, aside from a little steroid psychosis today which coupled with Hayward's last day brought forth gallons of tears, no matter what I was doing.

This morning McGuirk came in and began a dialogue with me "now we have a problem coming up here." (This discussion followed the usual back and forth about diarrhea, vomiting, eating, drinking and pain levels.) McGuirk made several appropriate changes, notably to the pain killer. Last night I took some Dilaudid about midnight and threw up within 2 minutes of getting it in my IV. So we're changing the pain killer. Back to the Fentenyl patch I think; I haven't been lucky enough to get there.

But back to the dialogue and the problem coming up here. The problem is that McGuirk is going back to the outpatient clinic to do rounds for a couple of weeks. And the next thing he said was "I have an inherent distrust of you and Dr. Aljitawi together." LOL I laughed and said it was because I love him, but I love McGuirk too. McGuirk made me promise to not leave the hospital til at least Monday. He needs to get some more results from the Endoscopy, which we hope shows a little bit of graft vs. host and will account for this annoying pain in my right side.

So I will get to see Dr. Aljitawi next week, well beginning tomorrow. And I am sure I could talk him into sending me home, but I won't.

Meanwhile Hayward went to the big doghouse in the sky this evening. Mark was in OKC and went with Shane to put him down. He said when the vet brought in the sedative, Hayward lifted up his head and wagged his tail. The vet said that was a sign of a well loved dog. Shane said they were going to go buy a bag of soy nuts and eat the whole bag. I introduced Charlene to soy nuts when she was in Kansas city one time, but Hayward ate the entire 1# package out of her suitcase. I reminded Shane and Mark that he also ate an unnamed friend's knickers right out of her suitcase too. ewww uyuck!

The nurses here have been more than kind, giving me lots of hugs and love and asking for stories about Hayward. My niece and nephew, Caroline and Anthony created some fine pictures last summer with the dogs in them and they are hanging in my room here at the hospital. My apartment really.

I have some new steroid drugs to take that are designed to protect the digestive tract without filling my body with mood swings. However, one tastes like Castor oil. I swear. It is really gross. Walt brought me some Coca-Cola to chase it with but there is still an aftertaste.

A couple of early Hayward pics. One where Mark seems to have him in his arms, and one of my children at the time we got Hayward adding a little perspective.