THe kiddie boost

The weekend was attended by both Mark & Conor. Cathi took a big jump forward in her spirits from this. It was also blessed with a cameo from Dr. Mcguirk. We say Cameo, because she has not seen much of Mcguirk lately and he always is so impactful on getting her eyes pointed in the right direction. When she checked in for the second round of chemo it was Dr Mcguirk that was so definite in his statement that they would get through this round of chemo and she would come out OK.

So Mark & Conor both spent the weekend with their Mom. Cathi's spirits continued to improve throughout the weekend as she does when her boys are present. No Maynard weekend could be complete without some exercises and a few laps. So Conor and Mark both got Cathi up for regular laps through the BMT ward.

While the pneumonia does not show signs of improvement in the pictures. It does sound better when the Dr's listen to her lungs. The fever is still intermittent but holds down to low fevers for short durations. What does up, must come down, or in Cathi's case; What goes down, mostly comes up... Food is still a concern, but slight improvement in holding down food continues. She has sustained wbc counts of .3 for several days now. Again this is the key to getting healthy again is getting Cathi's own body doing the work and that requires WBC's.

Meanwhile back to Dr. Mcguirk. The new strategy is the old strategy. Another mini transplant. This is still considered a procedure that is not as tried and true as the full blown marrow transplant, but Dr. Mcguirk's continued research and follow up with those who are making it work, has brought him to having a better understanding on getting success on this and therefore is moving forward with this again. No dates are yet set, but having a clear direction, and set of items to complete is great news.

There is much more excitement and enthusiasm after this weekend then before it started. Walt will again be the donor, and will complete this like before as scheduled. More news will be delivered on this as more is known.

Sat, 2.21 - Day +36 since Chemo, 20 days in the Hospital

It's been a while since a post went up, but here's an update to all you 'Rebooter Readers'. We need a moniker similar to 'Dead Heads' although 'Cathi Heads' doesn't have the ring to it. Feel free to suggest some on comments!

Cathi's been in the hospital for 20 days now. She is still dealing with Pneumonia, and there are varying schools of what type, its impacts, etc. This week the pulmonary guy thinks it is an odd form of pneumonia, the infectious disease doctor wanted to do a lung biopsy, and the tending physician (Abhyankar) is trying to sort through it all. The positive news is they don't stall the same way the 3 branches of federal government do! They all agree it's a form of pneumonia, and were able to agree upon a path forward.

Since the organs are still functioning well, the antibiotics were switched. And the infectious disease doc did not get the biopsy he wanted. They wavered back and forth on whether to do a less-invasive procedure to study the lung, but in the end decided not to do either one. The plan is to watch this 'cocktail' of antibiotics work over the next 3 - 4 days (it was switched on Wednesday and they like to see 5 - 7 days).

This morning Cathi is also getting a suped-up neupogen shot that is highly concentrated and works at more of a micro-level. Clearly if the WBCs can rise up then they can team with any of the antibiotic combinations to enable Captain Cathi a formidable match for the little p.

Have a great weekend everyone!

Valentine's Day Hello's

Progress comes in small pieces. Saturday it was No vomiting!!! and Keeping breakfast down AND protein shakes. This is such good news Ms Cathi ventured out to try some caffeine free diet coke, (no Pepsi, coke). But not the individually wrapped heart-shaped caramel filled Valentines chocolates brought by the dining staff.
She took a trip to get another CT scan. They are concerned because she is not remembering things, even right after they happened. Have they not met our mother, or Grandmother in Margaret's case. At least she has not lost her glasses on her head.... I think, oh yeah I'm a product of my mother as well, I can't recall if she lost her glasses on her head either. We had another Ace transport Gal #549. She stayed by Captains side, and even bumped her up a few spots in the waiting line. The results are in CT Scan of sinuses from a couple of days ago is "all clear."
Temperature was all over the place Saturday. We have good days and bad days with the temperature, so it spiked in the night and then went lower than normal. Not to worry as some temp was from getting a bag of blood, which is not unusual to get a spike in temp while the red guys are dropping in. Warm blankets were the theme for the day. The first one was to warm(toasted in odor actually 'like burnt french fries') But the next one was just right.
Highlight of Valentines day was Harrison popping up for a web cam Valentine hug. Got some good laughs with his vomit antics. Mark came by for a visit this evening and she was very happy. She always pulls lots of good energy from Mark's visits. Must be his Redneck Carma....
Kstate/KU game on this afternoon & Cathi now has the staff lined up rooting for KState. All this direction to get a cheering team for KState and then she slept through as KSU gave away the game to KC.
Cathi is up walking laps regularly, 3 walks on Saturday, last one was two laps around the hall. Not yet an Olympic contender, but good for a someone who is still not feeling 100%. No news on increased blood counts, but Dr's still willing to wait and see. Maybe a biopsy midweek to check the marrow. She has the prerequisite joint pain from the neupogen shots, so she will wait & see and think about little white guys growing in Cathi.

Dr. Fever has left the building

Wohoo 36 hours of no fever! Can you take a number on that one? But the only happy dance is the one in Cathi's stomach. As good as it may feel it comes back to a little overzealous dance every now and then. Food and the stomach dance just do not mix. Good thing for protein shakes. Dr. Aj says more protein shakes, not to be confused with protean shakes...



Today's events included a chest X-Ray and CT scan of the sinuses. With Pneumonia X-Rays are overrated. While the Dr. may hear that things sound better, it always takes several days before the X-Ray would actually show improvements in the lungs. So we are happy to when they say it sounds better and do not hear wheezing or crackles when listening through the scope. CT scans take a gaggle of Dr's to look at it before they can say anything about it, but they are spending their time looking for why the lungs were congested with the brothers. (Pneumonia Brothers that is) Kudos and an extra smile for the traveling attendant, code name #78 (that is what they call them at the hospital - 'traveling attendant #78'). She did a great job did not abandon her post and kept company with the Captain.



Once again Captain Cathi is after definitive answers from the Dr's. And the Dr's. speak in terms of what they see for the current day, and what needs to be focused on for better health. So Cathi and her team are anxious to see how things are developing and looking for counts to start coming up in the next several days.



Back at the ranch, her niece Margaret is in Kansas City for the holiday weekend and is attending to Cathi in the hospital. She is likely telling math jokes and the latest events in the college scene from the university. Not that this is a suggestion, but it would be highly recommended that this might be a good time to add some good jokes to the blog to help Margaret out. Cathi will need some good jokes for valentines day. Hey someone taught Conor some humor to add to the blog...

Chest xray in the bowels of ku med center where they left me sitting in the hall. Next time I'll have my sister take me out to the clinic and I'll come back. The lung scan part of this hospital needs a good course on Emily Post. Which I told the customer relations lady.

Then I called the cleaning lady back to clean the floor beside my bed and that was much more entertaining than being abandoned in the hallway. The lady returned and vigorously swiped the floor with her swiffer style mop, all the while eneregetically insisting that "it won't come up." I replied that it seemed like every day there were new "spots that wouldn't come up." Anyway it was marvelously entertaining.

I'm still having about one fever every 24 hours. Haven't had to change the sheets for several nights...just the pillow cases. So we hope the bright yellow antibiotic that delivers a chill along with its help, is doing the job.

The Pulmonary guy (American one..cute but no match to the Brazilian one) said the lungs sounded better yesterday after the bronchoscopy. They definitely hurt less.

I'm still trying to find food with the highest caloric value that is least likely to end up in the bin. (sigh) I am not getting far from the bin, but I haven't used it for a couple of days! The Nutritionist, Melinda, (Darth Vader type in this drama) visited today but agreed that if I would add protein powder to two shakes a day.

I'm still having some trouble with spelling and stuff --I recommend you treat these like the interesting things I hear sometimes.

xoxo Cathi

2.9 - Pneumonia Returns

Hi everybody -

I wanted to post another time today as the doctors have confirmed the pneumonia has returned. I do not have a confirmed % blockage reading on her lungs, but I know I'm optimistic that she's as alert as she is and that was definitely not the case when she was admitted to the ICU last summer.

They're also taking her in for a bronchoscopy tomorrow to try and clear out more of the funk in there. That can definitely help but isn't the most comfortable procedure.

Have a great evening and let's get the lungs clear!

Conor

P.S. I've posted my email address to the profile information so you can email me should I let the blog updates slide again.

2.9 - Ups and Downs

If anyone has any idea how many times we've gone up and down over the past 7 months, please let me know. :)

Thursday was much of the same as what I wrote earlier. She was doing much better Friday as the antibiotics appeared to be taking over against the infection. More importantly her fever had subsided for over 48 hours until Saturday night...

Saturday night she started feeling poorly again, but the nurses said even then she's doing a lot better than she was when she entered the hospital. Her temperature was higher and nausea returned.

The big news is Friday her biopsy was positive which means they are could begin neupogen shots in preparation for a transplant, and were even talking about a schedule. There was a time prior to her fever coming back Saturday that she may have gone home yesterday.

Now they say she will be in the hospital longer and it's potentially pneumonia. For some reason these chemo-induced illnesses mom's gotten sure do have a way of being difficult to confirm. At one point, it was strep. Then they thought she had an infection from the picc line. Now pneumonia? Seriously - that seems like every possibility underneath the sun!

All in all though, she's doing well - able to exercise although shortness of breathe comes with it, is pretty alert, and the fever is present at a manageable (i.e. not 104 degree) level. That's the update for now.

Conor

2.4 - Hospital, Day 4

Most of you would have been fairly amused at the email I got from mom regarding today's update. I know she got a kick out of it and was hopeful I could translate it (per Walt). I'll just say that I did my best. :) As anyone can imagine, I like it when Mom can email me with an update so here goes:

'Chasing and tracking an infection. Gathering info by the loads from (and about) my body. This is nothing like the first time. I have learned some things:

- Big machines are noisy and barely fit in your room.
- They generally come with least a half dozen people who might be affiliated with another machine.
- They have dozens of colors of conductors. It takes a lot of time for this group though.
- It doesn't seem disoaorganized.
- Orderly or not, I wish they could work in the day.
- Wait, that's when my fever went up again.
- And the night before that was all about my rate.

I've reached the dark side. Folks like staff cardiologists, including infecitous disease doctors.'

Needless to say she's got a long way to go but is much more functional than she was and we're still anticipating that improving as her counts rise.

Good evening everyone!

Conor

2.3 - Hospital Day 3, Part 2

After I wrote earlier, I was able to connect again with Mom and the nurse. Word from them (and Walt) is that the temperature is still up and down a bit although much more down than up. The nurse indicated she's been cold to the point where they've had to cover her in blankets.

The picc line was successfully moved to her left arm - woo hoo! I haven't heard whether they got it to the right point or if we have to go through the same routine of x-raying to confirm it's reaching it's intended destination.

She's still working to eat without vommitting and overall just feeling a little cloudy / stupid. That being said, she sure sounds a lot better than Sunday and is lamenting the fact that somewhere between Midnight - 5 AM Sunday, she was waylaid by something that's left her in the hospital the past two nights. You and I could equate it to completely being blindsided about like our stock portfolios the past few months!

I'll try to get another update for tomorrow. Keep the good thoughts coming. :)

2.3 - Hospital Day 3

It's funny because you want to start out this post with 'I'm sorry I haven't gotten to this because I haven't had time' or something like that. Then you realize no excuse is really good enough.

The weekend after mom's last post was good. We had quite a time at her house and it was great to be there. Multiple times she said, 'it feels so good to be here.' She dilligently checked her temperature and we watched for any signs that things were going south. Unfortunately with chemo and a compromised immune system there are seldom warnings.

Mom woke up Sunday morning and was vommitting while running a 100+ degree temperature. So Walt immediately took her to the hospital. By the time I got there they were still assessing the situation, but the first thing they went after was the temperature although it rose to as much as 104 prior to starting to subside today. The nurse actually said she's a little cold now so let's hope that's not a return. Along the way her body broke out in a rash (which combined with the temperature indicates some form of infection).

Early blood cultures showed a sign of strep. But they're starting to think that it's actually an infection through her picc line. And in hindsight, one of her valves had been giving a lot of difficulty the past 2 weeks requiring a bit of a 'punch' to get it flushed. That was removed and will be replaced today.

All in all they're saying this is likely a 5 - 7 day stay meaning mom will be discharged somewhere around the weekend for next Monday although you're fine with her being in an insulated environment until her counts come up. That should be sometime in that timeframe.

Just quick update but as I write things are much more positive than they were Sunday night and yesterday so let's keep them trending that way! I'll try to get an update out here tomorrow too.

Wiicounting events of Friday...

Loooooong day at the clinic today. My counts were down and I received a unit of blood and a unit of platelets. I also did some Pentamadine breathing. And had a CT Scan of my lungs.

The scan showed further improvement from the last scan a couple of weeks ago (I'm not sure pneumonia ever goes completely away!) But Dr. A ordered the scan because he heard a little wheeze in one lung. Drat. He said it could just be something bronchial with all the stuff in the air. So that's what I'm counting on.

I still feel good, though tired. I guess a Hg count of 6.6 would explain why I didn't get out of my chair much at all yesterday. I notice occasionally when I run up the stairs too fast that I get a little breathless. Everything is relative though; it's nothing like it was in the summer before I went in the hospital the first time.

Dr. A emphasized "Call about ANYTHING! Fever, cough, rash...." so I will take my temperature, observe my body and hopefully not have to call.

Monday I will have a bone marrow biopsy. If it shows good cells, then we schedule a new transplant and move forward. If it's empty, we wait a week. I think there will be good cells. That is why I feel so good. What we are waiting on for the next move is to see some new action in my bone marrow.

Looking forward to visiting with Walt and Conor this weekend. Walt will be here one more week then will go back to New Hampshire for a few weeks. He's hoping to house hunt in Johnson County this weekend.

Finally, even though I haven't turned on the Wii today, I was very amused by a friend's comments about the thing. She asked to wiimain anonymous so I have wiispected that wiiquest while sharing with you:

"I have no Wiiluctance in letting you use the puns; I'm glad you are Wiiceptive to Wiieally Wiierd mind states. Which ones will you Wii-iterate? Wiill your friends Wiitaliate for such bad puns being thrust upon them? I'm not sure I want credit for any of them; they expose the depth of my depravity. (For which I often have Wiimorse.)"

Do I or Don't I? [have chemo brain]

The clinic visit today was as expected. My WBC was .2 (up from .1 where it's been for a couple of weeks), Hg and Platelets high enough to need no transfusions. Liver counts normal--wow what does feel like? Mary said if everything is fine on Friday then we'll schedule a bone marrow biopsy for Monday and proceed.

I don't think I have chemo brain too seriously, but I totally forgot to call the transplant coordinator Monday like I was supposed to. So I don't have a new schedule. Walt is trying to plan a vacation and my transplant at the same time. I'm thinking this schedule is going to be as complicated as they come for my donor brother.

I've been spending at least 20 minutes playing Wii Fit each day, and sometimes a shorter second session. The thing laughs at me quite a lot. There is a ski jump game in the balance section and I've been slow to figure it out. Every time I hit the Start button to start down the ramp, a message, "takeoff failed," and a large snowball went tumbling across the screen. And every time I hit the Retry button, I felt like a fool. I decided it was a hopeless cause, kind of like me and Sudoku. Ain't gonna happen.

Joe, an aid at the hospital, was bragging about how good he was at the ski jump so I came home and slid on it some more. I have achieved takeoff a few times now. I have not figured out exactly how to squat to get my speed up so I can go a very long distance. Well, more accurately, I haven't figured how to REPEAT the squat that makes for a very long distance. My jump pairs tend to be 94 meters and 0 (takeoff failed.) So aside from keeping fit, it is amusing. I am hoping that Conor plays it this weekend so I'll have someone to compete with on the new games. My qualifications range from "unbalanced" to "yoga trainer" (this for deep breathing) to "almost expert." Who knew?

I do have an appetite, though I have to eat small meals to avoid nausea. Different things taste good to me this time. Coffee still tastes good, but hot tea is not very appealing, reverse of the usual. Water is just ghastly. Chocolate is only good if it crunches as in cookies. I'm still losing, but not so fast and I'm still in the acceptable range.

I feel pretty good. I don't like acting sick when I feel good. But I have things to do to get this body ready for the next series of events. I'm able to do a little bit of work, carefully writing everything down in case I do have chemo brain.

Only time will tell.

An Intricate Game

Today looks very different than I expected it to look. Just over a week ago I expected to be getting a transfusion of Walt’s stem cells today: instead I am at the clinic getting a transfusion of platelets.

Walt and I came to the clinic for the consent meeting on Friday, Jan 16th. Dr. Ganguly was our host for the meeting, with my transplant coordinator, Beth. Ganguly was reluctant to move quite as fast on the transplant as planned because my liver was still inflamed from the gall bladder surgery. He first said let’s wait a week, then a day, then a week. It’s a delicate balance between the risk of leukemic cells returning and giving the body time to heal. He noted that the blast percentage in my bone marrow at the last biopsy was 4% and they could not proceed with a transplant unless it was less than 5%. So he ordered another biopsy to have more information.

The biopsy returned a blast number of 16% which changed everything. I went back into the hospital the very next morning for a round of induction chemo to get rid of the extra blasts. This chemo was more intense than the original induction chemo, but administered in 6 separate doses, rather than continuously as the first time. I had to sign my name before each new dose because changes in one’s signature can indicate the cerebellum is affected and they would have to delay starting the chemo. My signature made it through, though I don’t remember writing it all 6 times. I guess memory doesn’t count, except the physical.

My belly is only swollen at the wound sites and they are healing. I am amazed what this body can do. I don’t have enough platelets, but wounds heal anyway. I need a lot of sleep and a lot of calories. My weight is dropping a couple pounds a day, so I haven’t eaten enough yet. Which is a statement I might frame and refer to in the future when it seems like I only have to read a menu to gain a couple of pounds in a day.

My spirits are good. I am excited after marching through a chemo regimen relatively unscathed. I am pleased to be moving in what feels like a forward direction again.

Today Dr. A took me off the IV antibiotic because the team is confident I am past the risk of fever or infection. I got platelets to boost the counts because by design, the chemo damaged my marrow so it isn’t making enough of them right now. The goal of the chemo is to beat up the disease factory in my bone marrow so that the healthy factory can take over.

It’s kind of like the conference table in my head. Different people want different things and the stupid ones have to be ordered into submission somehow. (Wouldn’t it be handy if we could chemo the irregular people from our lives? Or at least their irregular impact on our minds?)

So when my marrow starts working again, it will be making good platelets, cells that mature as they should (rather than staying blasts for too long.) Dr. McGuirk says he wants to see my counts recover but he isn’t going to wait for it. I believe the current plan is to have a biopsy next week and then decide the next move.

Home Again, home again

It's nice to be home again. I was surprised at how weird it felt to get out of the car and walk into the house, up the stairs to my room. The last time I left the hospital, I had to be physically carried into the house and stairs were not even an option. I'm happy to reprogram that physical memory, and curious about observing it. When I first arrived in the hospital I had to remind myself when I wanted something that I could get out of bed and get it. I didn't need to wait for someone to do it for me.

Cousin Sara fetched me home from the hospital, and her sister Gail is in town from Denver this weekend. Walt is still lurking. Mom and Dad went to the lake last night, but returned in a hurry this morning when nobody answered the phone. It must have appeared to be a choreographed sidestep. I didn't have my hearing aid in. They didn't call my cell phone. Walt was in the shower when they called his cell. Anyway, all is well.

At the clinic this morning I only needed the antibiotic. Yesterday I got platelets and then a takeaway bag of Potassium. This was a pump and bag of fluid packaged up in a bag that looked like the fanny pack that went round the world. Fortunately, I did not have to wear it like a fanny pack. But my first experience with take home drugs and pumps was uneventful.

I feel the chemo fog settling in. On the one hand it's frustrating, on the other it seems to take the cares of the world down the road. More naps, less activity. I'm hoping I have seen the last of the nausea, for this round. My eyes are blurry, but so far I can still see the computer screen and the crossword puzzle.

Daily clinic visits for a while to receive this antibiotic (via IV) that is designed to kill everything in its path. I admit to feeling almost giddy that I've had chemo and come home and it all went exactly as expected. My confidence is considerably stronger facing the next round of preparation and recovery for the transplant. The liver counts are bobbing around normal and the site of the gall bladder surgery is comfortable.

Annie continues to send me daily snaps of Harrison. Today's photo included Conor and the dog!

Cathi