Still recovering

Hello,

No news is good news...things are progressing as hoped. Maybe not fast enough to suit me but fast enough. I am staying with my parents still and sisters rotate in and out. Mari is here this week and Mom & Dad went off to the lake house for a few days. They returned today and reported eating out every meal except one, when they had leftovers from the night before. It is sometimes a challenge to come up with home cooked meals 3x a day.

All my food has to be prepared here...on-site. and there are quite a few restrictions. Nothing raw unless washed with soap and peeled (we had peeled zuchini tonight which only looked strange) and nothing fermented. No spices added after cooking. etc etc. All with the goal of avoiding any kind of germ since my white blood cell count is so low.

I have a visit with a pulmonologist tomorrow to see how my lungs are doing. There are still traces of pneumonia which seem to be on the run after 1 course of antibiotic. So I'm taking a second course.

I have few visitors, and some are simply waves at the door because, well because. I am vulnerable. My hemoglobin and platelets have been maintaining but the white cells are not producing on their yet.

I have graduated from the wheelchair (1 week) to the walker (another week) to independent walking. I first visited the clinic without the walker accidentally because Mari and I locked ourselves out of the house when we were almost ready to leave for the clinic; we left her purse and the walker behind.

I do exercises to gain strength. I read, I work a little bit. I knit (just learning,) nap...the days seem to go by without too much boredom. I check email several times a day and appreciate messages from everyone.

I must get a photo posted that shows me upright, wearing real clothes. All the photos out here are so...hospitally. I am pretty self sufficient.

The next step, when the doctors think I am ready, will be the bone marrow transplant. That will be another hospitalization consisting of around a week of chemo, 2-6 weeks of recover in the hospital, then 100 days out of the hospital. I am optimistic that I will be able to walk the halls and maintain my strength during that hospital stay.

I'll keep updating occasionally, but the reports are very similar. I don't want our readers to become bored!

Cathi

Sun, 8.17 - And the results are in...

...the Leukemia is gone! The nurse practitioner had told Mom yesterday (Sat, 8.16) that was a good sign. Apparently they are almost immediate when something bad shows up, they call pretty quickly. Results still weren't expected until Tuesday so great to get them early and be positive!!!

The past few days have brought several visits to the clinic and this morning the hospital. That's not unexpected, but definitely would prefer to stay out of those medical locales. They've kept doing cheset X-Rays and Friday mom got platelets. And under ideal circumstances, Mom will go back twice / week. So I would expect that to become the norm the further along we get.

Today Mom went to the hospital as she had a little bit of a temperature, and some slight nausea. They hung a few IVs of antibiotics then she'll return tomorrow for another IV bag or two. The funny thing is she slept most of the time there!

We did learn through the past few days that we're working towards a clear chest X-Ray. They speculate that could take 6 weeks (as Annie said, all these data points are finally starting to make sense). So Mom is doing her breathing toys 3 times or more per day at 10 time per exercise. Now that we have something tangible, she's on it. Did anyone expect less?

Beginning life as an outpatient.

I finally had the bone marrow biopsy today, almost painless. The most painless one I can remember having, that's for sure. The team remembered doing the test for Walt a few weeks ago when we started the match process. Jenny was in the room today, Walt.


We spent an unexpected 5 hours or so at the outpatient clinic today.They wanted much more than a bone marrow biopsy! I go back Friday and again Tuesday for more follow up stuff. I almost said I should have spent another day in the hospital but then I remembered how exciting it was yesterday to be home. I am surprisingly weak, and figuring my way around this "conditioning"diet to get ready for the BMT. The doc today suggested renting chair aerobics videos from the library to rebuild strength.


I have been moving around a lot today with the walker. Motoring on it is easy....sometimes getting up and down is not possible. I am lucky to have such good help. Work continues getting my house ready for me. But now it looks like I may spend more time at my parents' house simply because it is easier to set up extra care from here.


I am not ready for visitors yet but will hang out the sign soon.


Cathi

Conor Note:

I spoke with the transplant coordinator today, and she said the transplant will occur once enough progress is made. Funny though - I still need to call the doctor(s) since she didn't really tell me what that right amount is. She did say assuming the biopsy has good results then Mom can focus on ensuring good activity (getting around like she did on the walker today), eating right, and getting lots of fluids. So I guess that's what we'll do!

My words cannot do justice to the excitement in Mom's voice at being home last night. Although based on everyone's lovely comments to yesterday's post, you bloggers are just as excited. :) Now let's all keep that support and focus to get her geared up for the transplant!

OUTTA THAT HOSPITAL!!!

Coming to you from home. From outta that hospital. 33 days after going in. They told me it would be 42 days and I got out in 33.

I'm temporarily at Mom & Dad's until the work is finished at my house....we expected that I would get home Saturday and that is when the work is scheduled to be finished.

The biggest reason for early release was clearing of my lungs. I no longer needed the oxygen mask. which blew damp air into my hearing aids. dried out my mouth, etc. But was necessary to keep the blood oxygen level above 90. This morning the Respiratory Therapist put his little thing on my finger without the mask and it said 95. So he had me put the mask on and it said 97. So he dialed back the oxygen level.

No IV pole.
No oxygen mask.
I go back to the outpatient clinic for the bone marrow biopsy tomorrow morning.
Friends John Dvorak and LeAnn Zimmerman were kind enough to rush out to Overland Park with a walker for me this evening. During this stay in the hospital I've learned that when they say, let's do this, you just have to be ready.
and when home noise started bouncing around today I came home. Jerra came over and she and Mom stripped everything pretty much out of Mom's bedroom so I would have a clean place to sleep. Mari is sleeping with me tonight...I don't get around so good yet.

I am so grateful to be home. So grateful to have so many friends. I have no pain, just weakness and a bony little head. No visitors for a while. This phase will be building strength to prepare for the bone marrow transplant in the next weeks and months.

So thank you everyone. Updates may be less frequent for a while. And look for me on email and as the hearing improves, I'll be on the phone too.

Cathi

Mon, 8.11 - Biopsy Delayed (From Mom)

Well we have a special guest for tonight's blog entry...MOM! Here's an exact copy / paste from what she emailed me this afternoon, and we all know she can speak for herself. :)

"today's update....
no bmb today because dr. couldn't fit it in schedule. He is confident of outcome and will do it this time tomorrow afternoon. the pole meds have already been ordered.

wbc 3 - this is good what we expect coming off the neupogen [?] platelets - 11 so I got one unit Hg 7.9, still what we expect from a healthy, successful induction chemo.

Last prednizone is tomorrow. YIPPEE! but I have been sleeping good so no complaints. The blood sugar thing with prednizone is wacky. I tried to walk with walker today and just couldn't because BS was too high. If you are not diabetic, prednizone will make you that way. the MP3 player that peggy's beau made for me finally turned up yesterday. several days after I started sleeping again. It's a live and learn atmosphere in the hospital.

ending another antibiotic today.
only thing I will go home with is anti-fungal meds. no more pneumonium bros. ever. I will have to research the fungal vs. bacterial pneumonia.

Have learned that new doc, Aljitawi, is married, but everyone on floor is talking about the hickey. no more info on that! I like him a lot. but a funny response "Yeah I heard about that...."

watching olympics, sleeping. can't ask for more than that. Will be happy to get off the prednizone. Am not diabetic. or blind.

I know now that blood sugar is why I couldn't attain the goal of "walker to the loo" yesterday. Thinking about equipment we need to rent for home at least short term. walker. shower chair. commode. (sigh) but things could change up in a hurry when I finally get off the prednizone.

I have a bony little head, surprisingly and am anxious for new hair. Pleased the only real chemo side effect was loss of hair. This I can live with."

Also, here's what she said about the amazing 400M Freestyle Relay last night:

"I watched it live last night. just awesome.
the french guy put his hand on the aisle separator same time as wall. hurt his butt..tsk tsk"

Sun, 8.10 - Pre-Biopsy Day

Today was another pretty uneventful day in a good way. Mom got a great night's sleep last night - a whole 8 hours! She did accidentally remove the mask again though. The past couple of nights with the other mask (difference is the former one had an annoying bag on the front of it - loud and awkward) weren't nearly as pleasant even when she managed some shut-eye.

Sarah (Nurse Practitioner) came in this morning and was again very pleased with how she was doing. She liked mom slept, had not gotten sick, and proceeded to write the blood counts on Mom's dry erase board. It was pretty funny. She wrote the platelets. Then she wrote the RBCs. The WBCs were obviously missing. We had a little drumroll...6.0! Mom's face lit up like a kid in a candy store. Sarah mentioned she's happy we had that much improvement with the Neupogen stopping when it did.

Tomorrow we'll find out if there's any reason to be concerned. Mom's prepared yet a little scared of the bone marrow biopsy that's likely to take place in the afternoon. Needless to say we're all hoping for positive confirmation the Leukemic cells were killed by the round of chemo. If not, we'll go back through chemo again. This time knowing more of what to expect, and having the Pneumonia Brothers expelled from her body!

She proclaimed today's goal was to walk to the bathroom and back. Apparently she didn't make it there, but did do some trucking around the hallways. That's honestly probably a greater hike than to the bathroom and back. So good stuff.

I just realized I have forgotten to talk about her funny arm exercises. She's got this band that's almost out of a tough balloon-like material. She sits in bed raising her arms above her head, directly in front of her, then at almost an 'X' angle in front of her - both directions. They told her to do it 10 times at all 4 positions and ideally she's working towards three iterations. Yesterday I think she got to 1 full round of 10 then another round of 5. It's kind of funny to see the exercise commercials on TV then have her bust out the exercises. Very similar...ha ha. She continued these today though.

They also cutback on another antibiotic, leaving one more for her. That tells me they're pretty close to being comfortable with where she is although I think they'll need to be comfortable with all of her counts too.

Lastly today she did some blog reading and sent 2 emails. I don't think she read emails, opting for the blog. But it did get a quote out of her similar to things she's said before about how she can't believe we're all going through this. She says that a lot, but not in a negative 'woe is me' way. It's more of an amazement than anything.

Tomorrow's the test so let's all rally around and think good thoughts in the Central time zone PM timeframe!

Sat, 8.9 - Outside Day

While the weather in KC was a little dreery today, it was another positive day for Mom. We're considering a watch on Rhonda's parazzi since she seems to be the first to report everything. Maybe she's trying out for the National Enquirer. :) But per Rhonda's comment about receiving the picture today via 'family' text messages - she went outside.

I do want to make sure everyone on here is confident that the information you see here is the same information our family sees. I've continuously tried to provide accurate updates here so you know what's going on and there isn't any rhetoric swirling about. Mom has quite a network, and I know you would all love to see her if you could. She feels your thoughts every day, believe me. On several occasions she's made comments about people she would have never expected reaching out. On her behalf, thanks to everyone. It means more than you'll ever know.

Also, nothing has been lost in the mail so don't worry if you have sent a letter, card, or package previously to an address. The original address is working great as they love Mom and mail gets to her in a timely fashion. I have a feeling everyone's doing just fine given the sheer volume she receives on a daily basis!

Here are a couple of pics taken from 'Cathi's Day Out'.

Her comments were funny, 'it's just so weird to be out here.' You could tell she was very excited even though she was a little scared at first. The trip was only about an hour long as she still has to be on oxygen while outside. They'd told us we had 2 hours per tank, but I noticed when we got back inside that the tank was barely 1/4 full. So they may overestimate a bit on those things. That's also why you see her with the blanket though. The oxygen makes her cold when that's blowing on her face combined with the unseasonably cool 70 degree weather.

Most of the day was spent in the room doing normal stuff - eating, chatting, and resting. She's ever so happy to be stopping the steroids since it allows for more rest. On that note, we watched the Olympics and were preparing to watch Michael Phelps win his first Gold of this games and she ended up falling asleep only to wake up right after the race. Her comment was, 'I missed it.' That's ok, Mom. If you needed to sleep, we're glad you missed it! They also discontinued another antibiotic today. Her comment regarding that particular one was, 'oh good - that's one that you guys wake me up in the middle of the night for.'

I'd be remiss if I didn't mention the new doctor, Dr. Aljitawi (All-juh-tah-wee). In true Mom form, she likes to learn who all of her helpers are and he was no exception. He's a Jordanian-born doctor who studied here at KU, went to Stanford for a fellowship, and now has returned to bring the Bone Marrow Transplant unit doctor staff-level to 4: McGurk (head), Ganguly, Abyankar, and Aljitawi.

Now that's not even the reason I need to mention him. Janice and I got a chuckle after he left (and later Mom and I did) because he appeared to have a hickey on his neck! That was pretty funny, and man was I tempted to ask him about it. I'll leave that to Mom b/c I'm sure she can come up witih some funny way to bring it up.

Her WBCs are up to 4.1 so we're still trending up! I want to forewarn everyone that # could stabilize or potentially decrease in the next few days. They are transitioning down the Neupogen so Sarah, the Nurse Practitioner, said it's very normal to see that. So not a bad thing if the numbers decrease. We just need her body to continue to produce WBCs itself now.

That's it for today. Today was a good day.

Fri, 8.8 - Más Mejora

Happy 8.8.08 everybody. I decided since the theme was pretty much the same (More Improvement) that I'd switch up the language while keeping the intent. I'm beginning to wonder how people that don't have a specific topic do this blong thing daily! Onto the update...

Her WBCs are up to 1.9 today, and I can affirmatively say there's a huge difference from last Friday to today. She's more energetic. While I wouldn't put her in the hyperactive category just yet, there were several walks today and we're going outside tomorrow. The nurses and physical therapist said this would be good to have a change-up although it will most definitely not be a lengthy trek in distance or time.

She is still pretty restless while the steroids are ramped down off. The good thing is she recognizes it, and she gets excited when their conclusion is discussed. It just makes it tough for her to sleep and rest in general. They also won't give her ativan until it's completed. There's one other side effect - elevated blood sugar. She's had pretty high measurements that require insulin units to correct.

And thanks to steroids combined with no anxiety medication, we have the restlessness I alluded to last night. That restlessness seems to be the primary driver for some pretty good mood swings. There was noticeable frustration this evening a few times with just the 'what do I do?' thought. I'm sure it has something to do with being in the hospital for 28 days as well, but who's counting.

Ganguly's last day for this working period was today. He returns in 8 days, and said he doesn't expect Mom to be here then. So that would be a little earlier than the 1.5 weeks I outlined earlier - not by much, but earlier. The reason I point that out is she's now counting down 8 days. I told her to not worry about the # of days and just keep managing the task in front of her b/c she could get out even earlier or potentially later. In other words, achieve and pass the milestones as a result of your great health improvements. Don't worry if you don't hit one exactly b/c it's NOT a disappointment. Achieving it is a success regardless.

Now while Mom's memory of ICU is spotty at best, she's pretty damn sharp now. She (thankfully) just remembered this evening that she's a business owner. I'm hoping she doesn't start stressing about it now that she's remembered though! If you want proof she's clear though, here's a story from this evening.

A Lebanese doctor came in who had studied in 4 different countries. Well she's been watching the Opening Ceremonies for the Olympics tonight (remember - long, mindless TV is good). And the doctor asked her how they were. She responded, 'it's outre.' For anyone that doesn't do crosswords, that may be as foreign to you as it was to the doctor. He had no clue what it meant so she found great humor in the fact that she taught this educated, international doctor a new word. Too funny. In case you're wondering, it means 'to go beyond, in excess' in the French language. She said most people would recognize it from crosswords.

One other note regarding the Olympic ceremonies - Mom doesn't like the American hats. I told her Bob Costas said they were designed by Ralph Lauren and she said, 'well lemme have a second look.' She didn't say much until they refocused on our team again. Then quipped, 'there are the Americans in their dumbass hats again!' So I'm going out on a limb here when I say she didn't think they were better the 2nd time... :)

Ok, 2 funny stories. I think that's a good way to close. Good night all, and have a great weekend.

Thurs, 8.7 - More Improvement

Mom did not sleep that well overnight due to a few things including some burn in her eyes, but she did wake up with 1.3 WBC. That's a continued improvement that has everyone positive on this round.

Ganguly and I had what could be described as an 'odd' conversation today. I should preface this comment by saying today's his last day for a while... But basically we've been talking daily regarding Mom's health. So we're talking and it was like pulling teeth to get actual updates. In the end, it was positive with work to do. The reason I say it was odd is because he said he was leaving, but doctors would be less likely to speak with me daily b/c she's doing well. I guess that's a good problem to have? I do understand where they're coming from, and having been in some pretty dire straits I more than respect it. Just seemed odd.

First, he said that she could get out in as quick as 1.5 weeks or so. He really feels like she's on the up-and-up so should be able to get home. He (as well as the Physical Therapist) stated she'll still very weak at home, requiring 24 x 7 attention in a very sanitary environment.

I had to ask though - what about the transplant? Initially it was 3 months, but the transplant coordinator said that was before we found a sibling match. He said it would take approximately 6 weeks before she was ready for it. By my calculations, she'll start the transplant process in early to mid-October.

He proceeded to tell me more about the chemotherapy. During this initial round of chemo, she had what he described as a 5 out of 10 in terms of intensity. The next round, immediately prior to the transplant, will be a 10. Needless to say that's a lot. We'll have a clear idea of when it'll happen after the bone marrow biopsy on Monday. Everyone hope and pray that we do not need to revisit the 'induction' phase as a result of leukemia cells still being existent.

The steroids she's been on are more than having an impact. Luckily they're transitioning her off b/c the comedy of her being on them and healthier while dealing with various doctors is contagious. She knows the impact they're having, but has fun with them. Or at least she's having fun. An eye doctor came in today who she was a little annoyed with / mocking. Well he proceeded to dilate her eyes. Once she realized it, she decided to mess with him a bit - including faking sleep while he was there so he couldn't analyze her eyes. I'd ordinarily be a little disappointed, but I have a feeling Mom knows what she's doing and as Mari said - I'd hate to be a pneumonia cell right now!

She did have some applesauce and beef broth today with the hope being she could get the feeding tube out. She's more than ready, and wants that damn thing out as quickly as possible. Momentum is on her side.

She also walked around a bit, working out her legs and lungs. They did still say she'll require regular, if not daily, PT when she gets home. We're anxiously preparing the house for this, and will let everyone know when visitors are ideal.

Thanks again everyone and keep the faith!

Conor

Wed, 8.6 - ICU Departure and Light the Night

You read that right. Mom left the ICU today. Needless to say it was quite a turnaround today from the past couple of days - a great thing. Ironically it started out with a pretty restless night during which she actually wanted a 'day off'. When she was told she could have it, she immediately breathed a sigh of relief, took her oxygen mask off, and just relaxed. Of course the mask went back on pretty damn quickly as she wasn't quite that qualified for a day off. :)

But she got going this morning and Ganguly gave her an encouraging report stating that she was doing better. He reported her WBCs were up to 0.8 (the highest point in a couple of weeks). He also said she'd potentially leave ICU soon. I'm not sure if I mentioned it previously but last week when there was a disconnect between him and ICU regarding ICU departure, he told me it's the ICU doctors' call. Apparently that's how we progressed so quickly.

From there it escalated. She sat in the chair, walked around the ICU with her mask, had some of her attached contraptions removed, and was out of ICU in what seemed like 5 minutes. It was really about 4 - 5 hours. Mom was ecstatic to get out of there and I'm attaching the picture of her waving goodbye to the ICU.

Note she's also not wearing a mask at all. Instead it's a tube that goes ear-to-ear with an extension up each nostril. All I can say is she's come a long way if she wore that. From Day 1, that's something she avoided and even in her worst moments has mustered up the energy to decline it.

She's now back on the 4th floor and I'll post an updated room number as soon as I have it. Ultimately if you keep sending mail to the 4102 'address' she'll get it. The same staff she had previously works the ward she's in now, and we're hoping she's back in the 41st ward shortly. It's a matter of a room freeing up. Something she's extremely excited about is she actually has real clothes on...what a novel idea.

One last thing about today. She got the blog read to her today, which was very exciting. She did have one request - more jokes and stories but shorter. No pressure, bloggers! Also, until we announce otherwise she is not able to have additional visitors. So don't rush up there to say 'hi' and see how she's doing. The blog will continue to be the preferred method of communication with the outside world.

Light the Night

Mark has volunteered to captain the team for Light the Night. It's a Leukemia and Lymphona Society event on Friday, September 12th @ 6 PM in Overland Park. The specific location is actually Corporate Woods so not far from Mom's nor Grandma and Grandpa's houses. The walk actually begins at 7:45 PM so festivities will be going for quite a while beforehand.

If you are interested in participating, we would love to have you. Please utilize the instructions below to register for our team:

1. Click the following link: http://register.lightthenight.org/LTNRegistration/app;jsessionid=18EE76335208C6A84E18B70702A9E2B0.ltnreg-server2?component=joinTeamLink&page=Home&service=direct&session=T&sp=Steam
2. Click the 'Search By' dropdown
3. Select 'Team Name'
4. Enter 'Maynard' in the 'Search' box to the right
5. Click the 'Search' button. The site should return 'Team Cathi Maynard'.
6. Click the 'Join' button to the right.
7. Enter your registration information.

We'll be in touch as the team forms to ensure we're all meeting before / after, and potentially having Team Captain Cathi shirts made up for Mom.

Contact Mark Maynard @ 913.909.1750 with any questions!

Tues, 8.5 - A Good Day

I'm happy to report today was a good day. I can't say great, but definitely a positive day. She slept pretty well last night, and Ganguly had a positive report. He told me her X-Rays improved a little more over yesterday. Every little bit counts!

Mom maintained a good temperature today where she did not spike a fever through the day. That's more than good as it's been a while since that's been the case for a couple days in a row. Let's definitely root her on for the same tomorrow and going forward.

The biggest issues today were continued anxiety and distrust in the breathing machine(s). For the anxiety, they did go from an 'as needed' prescription to regular. That should help now that she knows how frequently she'll be getting the ativan and when. My only fear with it is she'll now eagerly anticipate it too much, resulting in additional anxiety.

The nurses and doctors did have to reassure her several times today that she had a very good day. According to those who were with her today, she took off her oxygen mask (the smallest one!) and said she was done. I'm sure it feels similar to a hamster wheel - you run and run without any perceived improvements. She also mentioned several times she's scared. That's what we're here for - to ease it. A lot of times by just reminding her of what to focus on, she'll do a lot better versus worrying about things that she cannot control. I'm told she reacted positively every time to the good vibes when she was scared or tired of the continued hospital stay.

She even slept with the small oxygen mask several times today while sleeping and maintained a good (90+) blood oxygen level. That shows improvement along with the speutum she got out. She's sleeping with it tonight after insisting she needed the BiPAP to do so. It was good to see her instead decided that the oxygen mask was uncomfortable after thinking she needed the BiPAP. Even last week she preferred the BiPAP to sleep. Hopefully we can keep her on the small mask as much as possible, ensuring her lungs remain strong.

Mom also got into the chair again today. That's a great sign too.

She did not ask to read the blog today although she was noticeably restless and wanted things to do. Margaret and Craig finished off her fireplace the past few days. They showed her pictures of it, and she was tickled at the finished product. So while the blog did not get read, there are plenty of comments to read tomorrow.

Short entry tonight, but really looking forward to getting back there on Friday and staying in the room to support and encourage!

Mon, 8.4 - Day 2 of Steroids + Neupogen

I want to start today's posting with a big THANK YOU to everyone that commented after yesterday's post. Those words went a long way towards inspiring Mom today as you'll see below. I know it seems very habitual to read my postings, catch up on what's been going on, and really not see any change. But I can assure you that inspirational comments have an impact every time. Please keep it up.

She slept pretty decent overnight including keeping her temperature down. That's always a good sign that we are monitoring closely.

Her lungs were about 5% clearer than yesterday. They were still about 66% blocked this morning according to Ganguly. I was able to resolve this clearing (which he would not attribute the improvement to actual pneumonia leaving) is due to the steroid. It's intended to clear out the lungs. However it does compromise the immune system further, making her more suceptible to infections. That's one main reason we're watching the fever. I believe I posted earlier this is a good indication of how she's handling any infections. He also said the steroid should clear up her speutum a bit.

Mom's sporting a Harley-Davidson doo rag today, and did get out of bed to sit in the chair for a while. We like the movement any time we can get it to work her lungs. So hopefully there's more to come tomorrow. She's also began to request everyone that comes into the room wear a mask to prevent any potential germ spreading. It's something she's been resistant to at times since it can make her feel sicker than she is. But for now, that's how we'll visit since that's what she wants. What Momma wants, Momma gets. :)

I asked Ganguly when we can expect to see results from the Neupogen, and he said it's hard to say for her. He would not commit to it with her myelodysplasia. He did let me know it requires healthy stem cells in order to work correctly though. Ordinarily it's pretty quick so let's pray there's more of an uptick tomorrow than there was today.

Ok, that's it. Keep up the great work each of you is doing with the positive comments (and jokes), prayers, and overall continued support. We're all in this together. Together we'll beat this.

Sun, 8.3 - Same Song, Different Verse

Today was a lot like yesterday. I got a voicemail from Ganguly this morning, which I knew meant he had news. And he doesn't call when there's good news. But he called to catch me up on what was going on. Here's what he said - we're essentially back to where we were a week ago. Then he laid out some additional treatment options and his plan. It was refreshing to have him tell me 'I'm going to do everything I possibly can to help her get through this.' That's the kind of doctor you want steering the ship.

He's clearly very worried about her myelodysplasia and its restriction of WBC regrowth. He said this Wednesday or Thursday would be more typical of a normal person to see increased WBC counts. And more than likely we'd be looking at 1.5 weeks for hers to regrow. With the pneumonia where it is, there's really not that long to wait. So he went ahead with two things today - steroids (assist in clearing the lungs) and Neupogen (the GCSF treatment I alluded to about a week or so ago).

The Neupogen's a bit of a risk because if the chemotherapy did not kill all the leukemic cells we could be helping them regrow. While that's a risk, it's ok for a couple of reasons. One is the leukemia is not what is negative right now. Second is another round of chemotherapy is possible to kill off the leukemia again. Our current hurdle is the leukemia and she needs her WBC's to battle it.

Now the good news for today is she was able to maintain a good temperature without spiking a fever. That is definitely good b/c Ganguly has told me before the fever is indicative of pneumonia still living and battling her.

Additionally her breathing didn't worsen today. She was on the CPAP and BiPAP the majority of the day. This morning Ganguly said there's still a possibility of intubating, but he said they'd probably do it when / if they do another bronchoscopy. If she can maintain good breathing on the CPAP and BiPAP though (while clearing some more of the pneumonia), we'll avoid the intubation and ventilator. We would certainly like to avoid getting to that state.

We also got a sign up there for her that says 'Beat the Pneumonia Brothers!' Hopefully that will continue to remind her of what she should focus on as it is sometimes difficult (and she requires anxiety medication to treat it) to get deep breaths.

She watched the Cubs beat the Pirates this afternoon and some HGTV tonight. It's funny b/c she watches the Cubbies b/c it's baseball and pretty mindless to leave on for 3+ hours and tune in or out depending on how tired she is. Often times that puts her to sleep and relaxes her - definitely positive.

Keep up the kind words and prayers you're doing b/c we need all the help we can get. I would request that if you are reading this blog today and in the coming days, PLEASE POST. She loves hearing them and asks us to read them to her for a pick-me-up. Needless to say you can never have too many attitude boosters.

Sat, 8.2 - Step Back

Thanks for all the good words and jokes. Mom likes hearing the jokes, and the knock-knock jokes in particular are a big hit.

Today was a step back. Ganguly reminded anyone that didn't already know this would happen that it's nothing unexpected. She had a bit more of a temperature, which may or may not have been due to platelet infusions. Ultimately she's had a temperature and required more oxygen than the past few days, but that is nothing to be upset about.

With all of us rallying around her, she'll bounce back and trend up as she was previously. I was telling someone earlier today that I just hope we've hit the worst of it as I know there will be plenty of challenges along the way. Today proved that.

Anyway, no PT today and this does confirm she's in the right place in ICU. She did require the BiPAP more than she has the last few days, but focus on the same things we have previously - beat pneumonia and grow good WBC's!

She may require another bronchoscopy during which they could leave an oxygen tube inside during the procedure. Now certainly we're hoping they won't need to leave it in nor execute another one of those. But if they do, let's hope it's the last one required.

That's it - short update but really just need to get everyone rallied around the positives she's had and look to greener pastures ahead.

Thanks everyone, Conor

Fri, 8.1 - Upright Again

There isn't a ton to report today, but the news to report is good. This morning's Ganguly Report (I feel like we should have some kind of news station acronym for his daily visit!) brought decent news. He felt like her left lung still had some infiltrates inside, but the right one was clearer than it had been. He was also very pleased that she made it through the night on the blowing mask set at 50%, and they talked later about reducing that percentage some more. Maintaining overnight did require some anxiety medication to ensure she didn't have short breathes. It isn't anything to worry about though. His only negative over the previous 24 hours was the temperature spike around 8 PM last night.

He confirmed she won't go back to 41 until Monday or Tuesday due to hospital overload. I guess they're currently diverting people who come to the ER. So unless something changes and a room frees up then she'll stay in ICU through then. He also said he expects WBC regrowth by next Wednesday or Thursday sometime. Based on our marrow biopsty conversation yesterday, I have a feeling he went back and looked at his diagram of her treatment to come up with the estimate. Either way I'm happy to have a 'line in the sand' where if we get regrowth prior to that we're happy!

There were a lot of naps today as Mom continued to rest up and still extend herself when she's awake. The two key activities today were physical therapy and gin rummy. She played gin rummy with Janice for a few hands, and I have to say it's funny to hear her play. She'll talk about how the hand's going to take a while or she's trying to figure out what to do. Then all of a sudden she'll say something funny about pitching her cards and lying down. That's about how quickly it goes.

The gin was after her physical therpay routine today. We had to focus on Brendan (PT guy) taught us b/c Ganguly told us this morning those guys don't work on weekends, and we'd be responsible for continuing any PT work she was going to do. But I've attached this picture sequence that should be worth more than a 1000 words...

That's right - she was standing for a bit (you can see her air boots that stimulate blood flow in her legs). She was going to sit in the chair for a while, and I would expect that to take place before too long. I don't think Brendan really knew what to do with her b/c he asked her if she wanted to do something. I told him, 'She'll want to do anything you'll let her. She'll at leat try whatever it is then tell you she can't after trying.' We all know what I mean!