What’s your sub?

Have you ever thought about what sub-cultures you belong too? What makes a group, a sub-culture? Do sociologists really study this? For me, a sub-culture is something that becomes ingrained into your life and defines you in some way. Some sub-cultures stick with you forever and others are just with you for a period of time. Either way, sub-cultures are not fads, they are part of you. They have a language that is unique to that culture and its members. They define you.

For example, there are things about being of Italian descent that follow you through your entire life – big Sunday Dinners, Christmas Eve celebrations, guilt that rivals your Jewish friends – buying the meatloaf TV dinners and avoiding the poor attempts at recreating Lasagna and other pasta dishes – having your grandmother Fedex escarole soup to you in college.

There are other sub-cultures that you live in only for a while, but they still become ingrained into your life.

College students remain a strong, brief, sub-culture for many people. We can all recall things we did than, that we would never do again. When I worked for a global freight forwarder, I traveled out of the country every month – Germany, Hong Kong, U.K., Australia. I would sit in the lounge and talk to others and eventually realized that I was a part of yet another sub-culture. We had our own language. We shared experiences that those who were not frequent international travelers could never understand. We stood differently in line at the airport. We went through security lines with ease, while giving dirty looks to others who didn’t take their lap-tops out until they got to the scanner. I may not travel as much anymore, but behavior I picked up during my time in that sub-culture stays with me today. It wasn’t just a group. It was a way of life.

Now Trish and I have become part of another sub-culture. It’s not a fun one. We do have a language of our own. It includes things like eclipses balls, saline and heparin flushes, PICC lines, ANC (Absolute Neutrophil Counts). There are many people who are part of this sub-culture, many more than you could imagine. Staying in the Rockwell House has been good for us. Sharing with others our common walk. Sharing stories of taking care of our loved ones. Being with people who have gone through the transplant process ahead of us and seeing them doing well. It helps. It doesn’t solve anything, it doesn’t take away the hurt or the fear. It doesn’t magically make me relax about our insurance situation. It just feels better to know you are not alone, alone in the struggles and pain. The old saying that – no matter how bad your situation is, there is always someone worse off is true. It’s all bad, It’s all different, but you are not alone and somehow that helps.

On the Trish front, today was a quiet day. Her counts were lower, whites and Neutrophils were halfed. Both the IPOP Attending and Dr. Griffiths were not alarmed by that - I was...but I calmed down after they told me too. We spent most of the day in IPOP, seemed slow today. Tomorrow we have to be in IPOP by 8:30 -- way too early for us, but it's just a walk across the street and then some. Trish is scheduled for a bone marrow biopsy on Thursday, but it looks likely that it will be scheduled for Tuesday. We should know early Monday. I wish I had filled out a Final Four bracket this year -- I had predicted Ohio State vs. Florida in the Finals -- but will get nothing for my prognostication. GO GATORS!

Friday

They weren't kidding when they said that this chemo treatment has a long recovery period...I guess the good news is we are saving money by Trish not being a full fledged inpatient, but it sure was easier on both of us as an inpatient.

Her counts did go back up a little today, all but the platlets, so she got some of those. Her red count was great (blue line in the chart), but that's because she got a bottle of red when she was a brief-stay inpatient the other day. They are changing her antibiotic today and we'll see how that does for her.

Hopefully the counts will continue to climb, without any major set backs. We have the folks a Health Advocates geared up to gather all medical records so that they can be submitted to Cigna for final approval for her transplant. One day at a time. We can only move forward so fast. Keep breathing, keep moving and dealing with things one at a time.

On my way to pick Trish up

Trish finished getting her two units of red and tons of antibiotics and is being discharged. I am on my way to pick her up now and tomorrow will be another day of IPOP and working towards higher counts and moving on.

The whole process is starting to wear on Trish -- I could really use some cheerleading help. Cards, letters, emails, phone calls, Trish needs to be revitalized, please help motivate her for the rest of the battle ahead and don't stop praying. Thank you for your continued support.

Thursday Morning Update

Trish was out for a CT early this morning, and will get her normal IPOP antibiotics this morning. Last night they filled her with some extra antibiotics to overcome the cause of her fever. Her temp appears fine. Her counts have gone down -- all except the platlets (she received some yesterday in IPOP). I don't have the exact numbers yet, so I haven't added them to the charts. They are expecting to release her around 3pm or so today.

A not so good Wednesday that turns into a pretty good day can twist yet again....

Just before going to bed, we took Trish's temperature and it was just under the call the doctor level....100.3, so we called the doctor to see if she should take some Tylenol. By the time the doctor called back she had risen to 100.4 (the official temp you should call the doctor at)-- that doctor said oh wrong guy call back and ask for ---- anyway by the time the other doctor called back, she had gone to 100.5 and we were on our way into the hospital. They admitted Trish right around midnight - 5A again. One room over from where she spent this weekend (Room 2 to be exact).

They say that she will likely be in for 1-2 days -- at least 24 hours. I'll be sleeping in tomorrow. I think her cell phone is back in he apt and I'm not going to post any number since she will likely not be here for long.

But if you can send her an email, I'll read them to her tomorrow (today). We need all the good cheer we can get!

OK so even a not so hot Wednesday can get better

Greetings fromAunt Mary's house...We're not back to stay, yet, but we are here for a visit. Trish felt much better after her treatments today and after a short rest back at Rockwell we headed up to Aunt Mary's for dinner. It was great not eating frozen tv dinners or hospital food and Trish looks like she feels great -- I'm sure some of it is acting. But she does look great.

One other thing we found out today -- kind of as a target -- Trish has to have a Neutrophil level of at least 1,000 and not be in need of blood products (bottle of red, bottle of white (platlets) whatever kind of mood you are in tonight -- sorry -- slipped into a Billy Joel state of mind) before she can come home. Once she is stable, they may let her come home before the transplant.

Stay tuned....

Not so hot Wednesday...

Trish isn't feeling too well today. Headaches, nausea -- same stuff, just a little worse today. We still walked over to the IPOP for her appointment today. Neither of us sleep so well. Guess the good news is she sleeps while she gets her antibiotics, fluids and stuff and I work. Today she will get platlets as well, her platlet count is only at 17 today. She wanted to try and visit Aunt Mary today, but I'm not sure she will be up to that drive.

We did go to Costco yesterday, we wanted to get some extra towels that were a little bigger and thicker than the towels at the Rockwell House. She did pretty good in the car yesterday. We'll see how she feels later today to see if we make it up to Aunt Mary. I'm sure she also has lots of cards and letters waiting for her there. These little trips help to give her some normalcy in these days of feeling crappy.

Next week will be another bone marrow biopsy, more angst and hopefully some moving forward to the next steps.

Stay tuned, I may post some more later today.

Welcome to Tuesday

Just another day in Paradise. The temperature is expected to climb to 80 here today, it might just make us feel at home. The last few days have actually been quite nice 60-70 degrees and sunny. Saturday was rainy. Trish's counts continue to climb. We went shopping at Safeway yesterday to get some food. Trish doesn't feel so good today, but all indicators are pointing up. If she does feel better this afternoon, we will head up to Aunt Mary's for a quick visit. The phone number on the left is our number at the Rockwell House, still best to send cards to Aunt Mary's -- we hope to be living there again by the end of the week.

Monday....

Trish had her first IPOP appt this morning after the re-admission and.....Trish is feeling better. I wheeled her to the appointment this morning, but she walked home from the appointment. Even over the bridge where she passed out in the hospital last time. I thought she was going to beat me up -- I kept asking her how she was feeling every few steps.....

We even walked around the long way to take Trish's friend Cathy's friend Joeseph back to his conference -- He was up from Florida for a conference and Cathy gave him a gift to deliver to Trish. We had a nice visit with him and also our friend Mary Ianiello from Mount Felix today. Trish is so popular she gets visitors in IPOP too.

Anyway she is taking a short nap than we are going shopping so we can eat. Than I'll do some more work. All in all today is a good day and her counts are on the rise. If you haven't checked out the counts you will want to today, nothing but rising lines today. Trish is hoping she'll feel good enough to visit Aunt Mary tomorrow or Wednesday -- Aunt Mary heads to Florida for Easter on Thursday.

Some Good News today....

Trish is looking a lot better today, still nauseous, but she is looking good. Susan, Beth and I took her for some laps around the nurses station and she looked stable. The red spots are disappearing and feeling better. A new theory on what they are/were are concentrations of neutrophils coming back. AND speaking of Neutrophils.....they were the invisible green line on the counts page....They have gone from zero to 200 today. That makes me for one feel a lot better about her getting out today.....

She's also more alert and stable in general and that's all good. Did I mention she has neutrophils?!!!! Her white count is also up. Once again I am behind on stuff as a result of her release, but I'll take my bride anyday over getting stuff done. Well, I gotta go pick her up she's getting restless and the nurse already has her off the IV. We expect to be at the Rockwell house for at least a week, than a Aunt Mary's for a week and maybe, just maybe home in Florida in about two to three weeks waiting for the bone marrow. Now if the Gators just win today it will be complete.

Today had its ups and downs

Down: They wanted to release Trish today, despite her headaches, nausea, vomitting and the fact that her pressures weren't quite right and she hadn't walked too much in the last few days.

UP: Trish's friend Susan and her friend Beth came to visit. They flew up from Atlanta today and visitied with Trish than we went to James Joyce pub for dinner and than more visits. They will visit more and than depart tomorrow a brief bu fruitful journey.

Down: I had planned to get some work-work done today and catch up on some home things, but because we just didn't know if they would let her out or not I didn't want to leave the hospital.

UP: Dr. Griffiths let the team know to check with me on Trish's status and after evaluating her again they decided to leave her in the hospital tonight.

Trish may get out tomorrow. But we'd all like to see her walk more first and they have put her on fall alert and alarmed her bed, so if she gets up i will call the nurses station. It's tough we would like her to get out, but we don't want to be getting out and readmitted every other day. This is tough enough without adding to the pressure. Trish had some attivan and is sleeping well now. I will let her nurse know and leave the room coming back tomorrow morning.

I look over to her bed while I'm typing every few seconds to watch her chest go up and down -- that's a good sign to. I hope the nausea and headaches subside tomorrow and she gets out because she is really ready. Good night.

Day 29 and things are looking better

Trish is happy - they finally disconnected the heart monitor and she was able to get up and shower. Dr. Karp was the attending again for one day, today, filling in for Dr. Smith. I was surprised she didn't wonder why Trish was released on Tuesday, since she was the one who said she won't go early.

Anyway, Dr. Karp declared that the red spots were fungal and she didn't need the biopsy to say that...We'll see what happens when the biopsy gets back. My money is on Dr. K's declaration. Trish is proving it by feeling better after getting the anti-fungal meds yesterday. The spots aren't going away yet though.

I have posted Trish's room phone number to the left again and updated the hospital address for the new room, but I wouldn't send anything quite yet to that address. Dr. Karp says she is here through Sunday for sure and she may get released again on Monday.

So if you wanted to send something - it is still probably best to send stuff to Aunt Mary's....If you are worried whether or not she received your card or package email me and I will let you know. As I said yesterday, we were able to divert the mail to her new room, but we missed anything that might have been delivered on Wednesday.

Should be a quiet day today. Trish is scheduled for a CT of her noggin' just to be sure I did a good job of catching her on Wednesday. Stay tuned. If anything else happens I'll keep you posted.

Trish's friend Susan is coming to visit on Saturday and I'll probably take a break.

Yet another Update

Well 5-6, actually turned into 7:30 for the dermatology biopsy. The biopsy is done and we don't expect to get results anytime soon. Probably sometime next week, They may get some preliminary results in 24 hours and 48 hours. We got a visit from Dr. Griffiths tonight. She ordered a head CT just as a precaution, since last time Trish was in the hospital she hit her head. I know I held her head right this time and she didn't hit it, but it couldn't hurt to get a good look.

Funny thing, last Saturday 5C cleared her of the non-existent virus, but today, 5A says she wasn't cleared and we are back to wearing gowns and gloves and masks.

A note to everyone who sent cards this week. I was able to go over to 5C and pick up Trish's mail and insure that they know where she is at. Still I would not send anything new up yet or if you do, send it to Aunt Mary's house. Once we know where we will be for more than a day or two we will update you.

I have been posting Trish's counts each day, to check that out go to "The Counts" page link is on the left hand column under "Other Links".

On the blood counts, the chemo Trish had is notorious for a long recovery (nadal) period. It could take up to day 40 for her counts to recover. Until they do she will either be an inpatient or staying across the street from the hospital. And given that fact and what happened this week, I will not leave her alone unless she is an inpaitient. I am just thankful that I can work from here.

Well I will update the site again tomorrow. At this point we don't know how long she will be in the hospital, but knowing she is in good hands I slept well last night and hope for the same tonight.

Update on the spots...

Dermatology just visited. They are coming back at 5:00p.m. to biopsy Trish's red spots. They won't have anything back definitive till next week. It could be an infection or it could be her Leukemia coming back -- I have never hoped for an infection more in my life.

I need to go do laundry now and work from the apartment so I can be back here by 5pm for the biopsy. More later.

The morning after...

I just spoke with Trish a few minutes ago - She was groggy and didn't sound so well. She said she was throwing up last night, so they have her sedated to control the nausea. I'll head ino the hospital in a few minutes and work from there today. It's a short 10 minute walk. I'm going to hold off from posting any phone numbers or addresses. Hopefuly anything you may have sent that was in transit will get redirected to her new wing/room. You can still email her though and I'll be sure to read her those at some point today.

She was doing so well to, this is likely more of a delayed effect than a set back, but we'll keep you posted as we all learn more. Have a great day! I'm hoping for one today.

What a day

The day started well.... We woke up, went to Trish's outpatient appt and all was well there. We started walking out and ran into the wife of a patient Trish knew from 5C - we talked to her for a while, than as we started to turn around to walk out - Trish got dizzy and passed out into my arms.

She was out for only 10-15 seconds. When she came to she started vommitting and feeling nauseous. In the meantime I screamed for help and the Hopkins STAT team came running out of the walls. We spent from about 11am onward in the ER. They decided to re-admit her just a little while ago (around 4-5pm). Trish was redmitted to 5A. Where I know everyone by name and Trish and every nurse is an old friend. Ruth is her nurse tonight. Knowing she is there I might just sleep well tonight.

At the initial exam the doctor mentioned that they would likely keep Trish in just a day or two to insure she was stable. Some of us think despite her deceivingly good looks, she wasn't yet really ready to be released yesterday (Tuesday)....I think today proved that. Keep praying. I need to sleep.

IPOPing it!

We checked in to the Rockwell House last night across from the JH main entrance...the hardest part about that was the 70 trips between Trish's hospital room and the car....Thank you all for your support - I have gained muscles and lost weight as a result......

They booked the room for us for two weeks, but we're hoping to get sprung from here earlier than that....I'll post that phone number and address tonight, cause I can't remember it now.

Trish was piturbed as they scheduled an 8am appointment this morning and she is still waiting for IV bags from the pharmacy at 9:15....She was hoping to sleep in (as was I)....We'll try negotiating a later appt for tomorrow.

After her treatment, we'll go grocery shopping at Whole Foods downtown...and han back to our apartment at Rockwell -- but for now I am going to keep working in the lounge while she gets her treatment.

Hold those cards and letters....

Trish is being sprung...Welcome to our hourly changing world. Trish is expected to be released as an inpatient today (this afternoon) and enter the world of HIPOP (Hematologic InPatient-Outpatient). They will not let her stay at Aunt Mary's they want her very close to Hopkins. So we expect to take up residence at the Hackerman-Platz house in front of Hopkins tonight. It is possble that you may get some cards or boxes returned if they are due to be delivered tomorrow or the next day or two....We will let the floor know to hold them for us if they can. Trish will likely be in HIPOP for a week or two and migrate to the outpatient clinic and than hopefully home in Florida for a few weeks before the transplant.

Dr. Griffiths stopped by last night and said that they will likely proceed with the Bone Marrow after another biopsy -- she doesn't expect Trish to need another round of chemo. Stay Tuned....

A new week.....

Some things to report today... I have posted "The Counts" Look in the other links section on the left. Trish's white cells had jumped up yesterday, but were back down today.

Silly analogy warning: The merry-go-round continues to spin for us. I think a roller coaster would be a more interesting ride, we would feel some progress, see different scenes as we were propelled up and down. Where the merry-go-round, just spins -- going no where. Trish sits board in her room, reading, walking, watching TV and anything else she can come up with to fill her time. She's feeling pretty good at the moment.

At this point, we don't know what the doctors have in mind for Trish. Will they wait for her counts to come back and try another bone marrow biopsy? Will they try another round of chemo to increase the chances of remission in the next bone marrow? What is next, stay tuned.

We did meet with the bone marrow transplant nurse today and this is what we learned.... From the date the doctors decide Trish is in remission and give the BMT case manager a green light, it will be about 6-8 weeks (think mail in rebate timing) before the transplant. During that window - Trish and I and everyone on the face of planet earth is hoping that she will be able to come home to Florida. She'll need to return to Baltimore, probably about two weeks prior to the transplant for prep work. Including about a week of intense chemo right before the transplant. After the transplant, the first three weeks are very critical, after three weeks she will likely be released to outpatient status and need to be within 20 minutes of Hopkins at all times for about another 4 months (give or take dependent upon too many factors to list here, your mileage may vary...).

One thing that we can say for sure is that every time frame we have been given up to this point has been longer than we were told. Nobody's fault - things happen. We just plan for longer than what they tell us and are pleasantly surprised when it goes the other way. In the better vain -- all the reading we have done, has mentioned intense chemo and radiation before the BMT, but the case manager told us today that they don't use radiation for this type of transplant, just the chemo. I think that is a good thing. The full body radiation had a lot of side effects in the reading I did.

On our walk yesterday, we stopped by 5A and spoke with Cat - Trish's Scottish nurse from last time -- she said she had a friend who had recently gone through the BMT and was doing great -- fully recovered. She also had a patient on the floor she would have introduced Trish to who just recently had a BMT and is doing well (but couldn't unless they were both in the hallway at the same time -- HIPPA and all). Anyway, we have been hearing a lot of positive stories lately instead of all the bad ones, so I will take that as a good sign. Heck the case manager said that a lot of the folks with AML like Trish say the BMT was easier than the chemo and given what Trish went through chemo wise the first time I can believe that. Of course, that's assuming that the graft versus host disease is mild and just annoying enough to kill the leukemia.

On the donor front, Once a date is set the donor will go in and be briefed again on the process and have another chanced to bail out -- we're hoping he stays in the game. Poor guy, he will not be donating via Pheresis as originally thought, but he will actually have the marrow extracted in surgery. The case manager explained that "for this type of transplant" we use the marrow, not stem cells and in fact she says everyone is going back to using the real marrow for this type of transplant. The good news is that Trish has 5 fully matched donors so we have some alternates in the case that the winner is not willing or able to accept their winning status of saving my wife's life.

Well life goes on,
albeit,
very
very
slowly.

Happy St. Patrick's Day

Trish, the boys and I had a pretty good day today. Trish wanted to let everyone know that her room was fully decorated for St. Patrick's Day -- celebrating her Irish side. So she had me take the pictures above. She was also wearing Irish shamrock socks today (not pictured). There are also some pictures of Sophie (her "medically approved" cat) and of all the cards and letters she has received below this post (there are some that haven't yet made it to the bulletin board). On the medical front, her white cells reached "50" today. Dr. Karp mentioned letting her go early today, something she said she wouldn't do just a few days earlier. I'm confused by that....guess we'll find out more soon. After the short time together today the boys fly back tomorrow. I need to have them at the airport by 2pm. They land at home by 6pm and should have enough time to complete their homework. One other item of note, today, Trish was cleared of the "virus she never had" and you no longer need to wear full gown and gloves to visit -- it's still flu season, so a mask is still a must. One other item of note: Trish leads the floor in laps (walking aronf the nurses station. Twenty-six laps equals a mile. Trish has walked 301+ laps in the last week.

Saturday Morning Live....

Well the boys and I survived our drive up to Baltimore....

It was a pretty good drive. Matt drove us out of Broward county and into Palm Beach County....I took us the rest of the way to Savannah and started the drive the next morning. Andy took over just before South of the Border and after lunch. He probably regrets that, as shortly after we entered North Carolina the highway turned into a parking lot. We were diverted to US 301 and it took us about 2 hours to go 7 miles. After we got back to I-95, he drove a few more miles to get us past the backups and then we exited and switched drivers. For Andy -- he has very little patience -- he did a great job of dealing with the delays.

This combined with really bad weather, caused us to get in much later than we had planned and we simply called and waved as we drove past Hopkins and Trish. Aunt Mary made her famous pancakes this morning - after showers we're off to see Trish. I miss her so much. I know she'll be happy to see the boys. We'll have much too much more time to wait before hearing anything new. Trish is feeling good and bored, so please if you have a chance to call her, please do so. I may make her call around for a new home owner's policy -- ours expires April 26. Insurance and I just don't get a long I guess.....

Bone Marrow Results are in

And they are ...

mixed.

Dr. Karp visited Trish just a little while ago. She says that she had too look really hard and that she can't tell if they are dying cells or new cells, but she did see a few blasts in Trish's marrow.

So they can not declare her in remission.

Having said that, Dr. Karp went on to say that this isn't bad news yet. They have a lot of tricks up their sleeves yet to roll-out and by the next marrow biopsy if these were dying cells they may not be there at all.


So this means that when Trish's counts recover they will do another biopsy. It means that this hospitalization will last a little longer than expected. It means we can't quite yet move on the the transplant. And it means nothing more till we cross the next bridge.

I have to run, boys Lacrosse game starts in under anhour and it's at least a 30 minute drive.


In the meantime, Trish feels well and is very bored. Please help fill her day, give her a call. Send her some work. Thanks.

Tuesday - No News Day

Still waiting for the official results of Trish's bone marrow biopsy. Today was a no news day. One of the fellows visited her this morning to say the results haven't been posted yet. So we continue to wait for more news.

Trish's Mom flew home today. Andy and Matt have a test and quiz respectively on Thursday, so we won't leave till after 3pm on Thursday. It will be a long trip up and short visit for the boys...

Trish is still feeling pretty good. She told me her hair was starting to fall out, while she knew it was a possibility, she was still hoping to avoid it.

Nothing much else new - I promise when we get news on the BM Biopsy we will send out an email.

Monday Night - No news yet

It's 11pm on Monday night...No news yet on the Bone Marrow Biopsy. We should hear something tomorrow. Trish is bored out of her gourd....Please folks at the Rock, give her some work....I kept her busy today making calls for things and such -- it was nice to not have to do it. I would never make a good single parent.

Speaking of parenting....The boys WON their Lacrosse game tonight -- the home opener. Matt had another three goal night. Andy played great defense and had a great full field pass from behind his goal to 3/4's downfield where a team mate made a perfect catch. I wish I was half as athletically talented as my boys (not to mention cute and smart too).

I ordered some books from the bone marrow donor program and the bone marow transplant info network and they came in today, but I won't have a chance to read them anytime soon.

When I get news of the BM Biopsy, I will send an email alert. Until than I think I will get some sleep. Goodnight!

Sunday morning

The daylight savings time change didn't effect Trish - she was up bright, early and quite perky this morning. Andy and I were barely up and Matt is still snoring, when she called.

Dr. Karp this morning told Trish that her white cells hadn't started coming back yet and that was a good thing. Apparently if they start coming back too early that is a sign that they weren't able to put her in remission and the cancer is aggressive. So, I guess her cancer is as tired as all of us. I got clarification from Dr. G on the inpatient/outpatient thing mentioned on Friday. They will sometimes let people go home before their counts reach the desired levels if they are sure they are rising and make them come into IPOP daily. In Trish's case they will hold her in until her counts reach the desired levels - no exceptions. I think that is good. Less risky, etc.

Lots to do today and this week befpre driving up to Baltimore.

Friday Night News

Happy Friday Night! Day 15. Trish is still feeling pretty good today. She kept busy, walking to the gift shop with her Mom today. She said bought a magazine and said she found some recipes for me to try with the boys. I made two home made pizzas tonight and the boys had other plans. They stayed after Lacrosse (LAX) practice to watch the school's No. 1 rated baseball team. So much for my guys night with pizza and the Gators basketball game. Guess I know what they'll eat for breakfast.

The boys lost their LAX game last night, but Matt scored three goals. Andy pummeled a few kids on the other team with his crushing defense -- both were hurting this morning. Next game is at Nova on Monday night. This weekend should be good -- lots of work to do before we drive up to Baltimore next weekend, but we should get some R&R too. Sandy and Ed (our neighbors) have invited us for dinner Saturday night. We'll catch a hockey game courtesy of Kelly and eat at Trish's sister's house on Sunday.

Enough about us at home....Dr. Griffiths came by Trish's room for a visit tonight. She said the preliminary report on the bone marrow biopsy looked good, but the report isn't finalized yet, so we can't celebrate quite yet.

The other thing Dr. G said was that while other folks may get out when their counts recover to a certain level and get outpatient services -- Trish will not. Trish couldn't explain it to me (I have an email in to Dr. G), but Dr. Karp said Trish would not get out till they were ready - the guesstimate was another 21 days. I don't know if that means that they think they will have the transplant ready very quickly and they don't want her out where she might catch something or what.... That's good and bad. Bad for insurance purposes, but good for transport and care purposes. Hopefully we'll have something more on this and the biopsy by Monday.

It's half-time and the Gators are up by 21. I'm hoping we can beat this thing just as well as the Gators are currently beating Georgia. Everybody seems optimistic, but there are so many little things that can go awry along the way. We know a lot of you are wearing out your knees praying and we appreciate it. Thank you.

A Good Day - in a lot of ways...

Today was indeed good. It started good and ended good. Trish's bone marrow biopsy went without a hitch. She recovered quickly from the anesthesia and did some work and sent it back in to her office. She told me today was the best day yet, mild headache but overall she felt great and had lots (relatively speaking) to do.

The research nurse visited Trish after the biopsy and asked who she had bribed or why she was such a VIP (trust me, it wasn't because we made a large donation). Trish asked her why? She said no one gets to pick who does their biopsy and a senior fellow is never called back to the floor when its not their rotation. Of course our very own Dr. Griffiths did Trish's biopsy today. My Mom said I ESPed her to do it, since Trish wouldn't let me email her. The reality is she just simply offered to do it when she dropped in to visit Trish. No matter how, what or why -- it was a good thing.

Another good thing is that the Transplant case manager from Cigna approved a special travel benefit today. This is money that doesn't count against the life time maximum (I'd have to refuse it otherwise, so we'd have maximum Trish dollars). This is money that would pay for Trish or a caregiver to travel or house in the Balimore area. It should cover our expenses driving up next weekend and that's all good.

Today was the first good news day in a while -- most of the bad news has surrounded insurance issues and they still are a huge potential problem. I won't stop working that issue, but I am going to lighten up. I need to focus on Trish and the boys -- the pre-work is done. I know what I have to do even if it is quite ugly and I have some time before I have to deal with it.

Dr. Griffiths is optimistic about the results of today's biopsy, but we won't really know the results for three days. While they haven't shared the actual counts with us. Dr. G says that they beat Trish up real good and her counts are really low (a good thing at the moment). Trish won't be discharged until her counts reach a certain level. As soon as the start tracking the rise of her counts (a hugely significant indicator), You'll see a link to "The Counts" in the other links on the left so you can cheer her on and track her progress.

I'd like to again thank all of you for your love, support, prayers, good cheer and everything else. We could not take this journey without your support. Thank you.

NEWS FLASH - BM Biopsy scheduled

Trish just called (about 8am). The Bone Marrow Biopsy is scheduled for 9:30 this morning. She called back a few minutes later to get an Ipod lesson from Matt (our resident expert). Her office sent her up an Ipod fully loaded. If you usually try to call her in the morning, you may want to wait until after 2pm -- she'll likely be groggy much of the morning. Look for a post tonight with an update, but remember the results are up to 3 days away.

Trish sounds great today

Trish is sounding and feeling great -- so I for one am optimistic about her biopsy tomorrow. It's almost 8pm and while I am sure someone knows when she will get the biopsy tomorrow -- it isn't us. Trish has asked and no one know for sure. I could probably email Dr. G and she'd tell me, but I don't want to bother her.

A day or so ago I wrote about the trickle of stuff coming into Trish's room -- well scratch that it has been a flood.... The aides on the floor are about to form a union. They are working too hard bringing stuff into Trish's room. Thanks for your support and keep the aides cranky. It's Trish we really care about.

On the insurance front and home front -- I think I am doing much worse than Trish. I think the boys may start stopping at McDonald's on the way home -- what can I say I was never much of a cook, but I am trying. The insurance thing is very frustrating and I think it will end badly or at least produce large amounts of stress for me. I have someone sending me something on alternative policies tonight. From what he said, we may have to wait until the Cigna policy runs dry before we can purchase a HIPPA guaranteed new policy - I think I am totally ready to move to Canada.

We have consulted a lot of folks on this and are very greatful for the help, but you would think this is not a totally uncommon problem and that there would be a clear answer on how to fix it.

You know we are the lucky ones. Our policy should get Trish through the transplant. We found out about another person who may not even get to the transplant because of insurance -- that's just not right. Many of us joke, that we are worth more dead, because of life insurance policies. That's just a fact - it is just incredibly sad, however, that we don't place a higher value on saving lives that have a good chance of being saved. It is just wrong.

Tuesday - Awake and Well

Trish seemed awake and well today. Aunt Mary came to visit and brought the care package from Luanne to the hospital. The picture frame also arrived today and Trish was very excited to see everyone on the frame. Thanks for sending the pictures in. She told me she would watch the boys Lacrosse game later tonight. Also in the box, were Birkenstocks from MarcO (the boys and I tried to fit the gummi's in but we just couldn't do it, hopefully we don't eat them all before we get up there) and the "special" lotion and lip balm from Sabine and Helmut (Trish's favorites). Today was a very busy day. I can't wait to talk to her tonight, if I can sneak through all the other calls, she's likely to be tired today. Amanda and Dylan our neighbor kids wanted to send Trish flowers, but couldn't so they made her flowers. I haven't seen them yet, but they sure made Trish happy!

There won't be much news till Thursday and than next Monday when Trish has her biopsy and the results of the biopsy. Below is some more info on the transplant from Trish's number one advocate (besides me that is), Dr. G:

The transplant we are planning to do uses two different chemotherapy types. These are Cytoxan (which she is getting now) and another medication called busulfan. These medications are given for four days before the transplant is infused.
Trish's transplant will be from an unrelated donor, so the graft (the transplant) does not get manipulated at all before she gets it. It comes directly from her donor and goes into her.

The transplant we will give her is called a fully matched unrelated donor transplant. Here at hopkins, we are doing all our transplants on a particular clinical trial which involves giving a dose of cytoxan to everyone on the day following transplant. This strategy is designed to decrease the possibility of graft vs host disease which can be so devastating in patients who recieve an unrelated donor transplant. I do not have the data at my fingertips regarding outcomes for the patients who have been enrolled on this protocol so far, but before we go ahead with transplant I will get them for you.

I think it is important to realize that without a transplant people who develop relapsed leukemia have a very high chance of relapsing again if they are given chemotherapy alone, and once they relapse a third time the chance of getting a prolonged remission declines considerably and the mortality is very high. It is the result of this very poor outcome in patients with relapsed leukemia that we entertain transplant as a viable treatment strategy despite the very real transplant related risk of mortality and the very common side effects of graft vs host disease.

I hate leukemia and if there was anything else that would work, I would do that instead. But transplant is really the only treatment option that I have to offer that can give trish the chance at a cure for her leukemia. I saw Trish yesterday and she actually looks really well. She tells me that even though she isn't eating, she feels ok and the second round of chemotherapy was not as horrible as the first one. She tells me that her itching is entirely gone. She is due for her day 14 bone marrow on thursday and I told her I would do it, since she says she would prefer that. I will let you know as soon as we have the results.

Take good care of yourself and the boys, I know you're worried and there is nothing that can be done about that. I'm worried too, but so far, Trish is doing a great job and everything is going as planned. I will keep looking in on her. Don't hesitate to email me if you need something.

Monday News - Day 11 and counting

Trish is back out of her slumber and that's a good sign, except it means she is back to being bored. Her digital picture frame arrives tomorrow, so that should keep her busy and laughing at all of us for the day. I also sent up a scrabble game so we can play when I return, maybe she'll play with her Mom in the meantime.

Trish called me back tonight less than an hour after we had spoken and she sounded happy. I asked why she called me back so soon after we had spoken and why she was so happy. She said because I have some good news for you and I know it will make you happy. Well before you get carried away -- there was no miracle cure today, it was a smaller miracle.

Dr. Griffiths came to visit Trish, as she often does -- just to visit and check in on her. In their conversation they talked about the upcoming bone marrow biopsy. Dr. G said she could probably swing by on Thursday and asked if Trish would want her to do the biopsy --- How fast can you say, of course?! She told Dr. G that I had been offering to email her and ask (read as beg) her if she was available to do it -- especially since it is supposed to include a lumbar puncture as well -- but Trish told me not to send the email. Trish informed her that she had just made my day. She was indeed correct, that was the best news I received all day today!

Almost worth a grand celebration, but I am too tired. Boys should be home soon and I need to pop dinner in the oven. Though after hosting my friend MarcO last night for hamburgers, my cooking skills are proven to be, not the best. Trish always bakes a fresh batch of two dozen or more cookies for MarcO when he is in town. They of course are fresh and made with the expensive butter (no store brand or even LandO'Lakes will do). I felt an obligation to try for MarcO last night, but the cookies out of the tube just somehow don't measure up to the Trish Ahoys he has become used to receiving. Might have been the ones I burned. Trish's baking skills are well known around the world -- I used to bring fresh baked biscotti to meetings in Hong Kong and Germany (I used to travel with my own portable white boards too -- you just never know when you need to draw a network map and give a lecture).

Thanks to all who have called and sent cards, letters and care packages up to Trish. The folks on 5C have already said she gets more mail than any other patient -- I told her to tell them they haven't seen anything yet -- it's just a slow trickle compared to the full flood we saw last time around. Your encouragement and prayers mean so very much to us. Thank you.

Weekend Update and some BMT info

As expected not a whole lot of activity this weekend as Trish recovers from her recent dose of chemo (Friday/Saturday). She is sleeping much of the day and feeling nauseous and sick much of the day. But I can always find something to say -- I'm a DiComo after all....

Last night I spoke with her and she was pretty tired and attivan loopy. She's starting to show signs of being worn out by all of this....She told me to tell her next time somebody wants to slowly poison her to death to save her life to think twice about her options....I have always admired the way she accepted her treatments and knew that she had to plow forward to have a chance and had a strong and simple will to survive. I knew that she would need this attitude, faith and drive to get through the treatments. This admission of being human concerned me, but honestly it's also overdue. She has been through so much already and it is just beginning.

When I spoke to her this morning, she sounded more awake and renewed to fight this thing. In rounds this morning, Dr. Karp told her to chill out, they won't even begin to look at her counts for two weeks. With this round of chemo behind us, so begins the next round of waiting.

If you want to know more about the BMT process, I've included some links below and an e-mail from our favorite doctor - Elizabeth Griffiths.

http://www.hopkinskimmelcancercenter.org/kpr/bonemarrowtransplantprogram.cfm

http://www.usnews.com/usnews/health/briefs/mentalhealth/hb050414b.htm

http://www.georgetownuniversityhospital.org/body.cfm?id=675

From Dr. Griffiths:

Dear Chip,
I agree completely, I am afraid of the BMT as well, the downside of transplant is easy to see, but the problem with relapsed leukemia is that it is absolutely not curable with chemotherapy alone. The BMT is a blunt instrument, it is not what we would choose for her in first remission, but given her relapse, the standard of care is bone marrow transplant, provided she acheives a remission with our current therapy. I think you and she and all of your family are right to be afraid. The only thing I fear more than a transplant is the leukemia.

As I said to Trish, and I think I've said to you before, I anticipate that Trish will get a remission with the current thearpy. I am very hopeful that the day 14 marrow will show us exactly what we expect to see, (that is to say nothing) and that she will recover her counts afterwards quickly. I have no reason to believe that she will have any trouble getting a remission. The proof of efficacy, more than in the day 14 marrow will be in Trish's count recovery.

I have been, and continue to be very optimistic about our chances with Trish. I have every reason to believe that she will have a remission from our induction therapy and that we will get her to the transplant and through the transplant without incident. I think part of the strategy for success must be for all of us to be both realistic, but also to be hopeful and focused on the most likely outcome, which is a good one.
I like to plan for the worst possibility while anticipating the best. We have given her the most aggressive treatment available, and now we just have to wait for the results we want, but sometimes waiting is the most difficult part.

Best,

Elizabeth

Chemo Day Again

Trish's Chemo started late today. It was supposed to start at about 9am, but it was late coming up from the pharmacy. They finally got it started in the 11 o'cock hour, which explains why she sounded so good this morning and mid-day when I spoke with her. She sounded upbeat and full of energy. I spoke with her late afternoon and she sounded like she was asleep (or drunk), but they had already started loading her up with the meds to avoid the nausea that make her sleep. She will probably sleep most of the weekend away. Before she got so sleepy, I was able to tell her that I lost 5 pounds in the last two weeks -- she had Aunt Mary trained to make sure I ate well and it worked.

Speaking of sleepy, I had no drugs, but took several naps today myself. Tonight I am working on her digital frame. I will ship it off on Monday -- so this is your last chance if you wanted to send her some pictures.... trishpix@dicomo.net .

Speaking of pictures, Trish let me snap two pictures before I left and has authorized them to be published. One is of her smiling on that new comfy Johns Hopkins Hospital bed and the other picture is of her feet. She already has a reputation for having the best socks on 5C.....These are some of the docs favorite -- individual toe socks....Maybe she'll let me complete the sock picture theme and snap the kittens, bunnies and other fun socks she has accumulated. Even on after a dose of chemo doesn't she have the best smile?!

Thanks to our friend John Jenkins, Trish will soon get to see her boys in action. John came out to their Lacrosse game last night and video taped parts of it. They lost, but our boys played well. It's amazing how many guys bigger than Andy he can deck and make it look easy. Matt almost had a goal, they say it got trapped in the net, looked like a goal to me.

Trish will receive another double dose of chemo tomorrow and than it is just a matter of waiting (again). Waiting till March 9th to see if they successfully put her back into remission, waiting several weeks for her blood counts to return to a safe level, waiting for the bone marrow transplant. Stay tuned, as we again ride this roller coaster, together.

It's an ok Day today -- Tomorrow starts chemo again

Trish is feeling OK today, if you want to sneak in a call or email before the chemo starts up tomorrow. Thanks to the Rock for the care package that arrived today. Thanks to the Kocals for the care package yesterday. Remember use the hospital address to insure Trish gets your cards and letters and such quickly. 50 minutes and I am off to the airport. I , miss her already!

Last call for pictures! If you want your digital greetings to make it to Trish's frame send them soon. I am shipping the frame on Monday. Send any last minute pictures to trishpix@dicomo.net.