Monday - Update

So, you know those stories on the news where the parent leaves the child alone for a very brief period of time and tragedy insues......

We had our own mild version of that last night. It was about 11pm. I left Trish alone in the bedroom, went down the hall to brush my teeth, and heard a loud boom.

I ran back to the bedroom to find Trish on the floor. She had fallen and hit her head on the HEPA filter I had bought to keep her air clean. She felt fine, didn't pass out and was more embarrassed than anything else. She did have a small cut above her eye. The first thing she told me was not to call the hospital, she was fine. I told her we had to compress the cut and if it didn't stop bleeding in 10 minutes we would have to call and go in. Saturday when we were in IPOP her platlets levels were low and I wasn't optimistic the bleeding would stop. It did stop. We weren't sure if or where Aunt Mary had bandaids, so I took some surgcal tape and a couple of tissues and made my own bandaid. Trish was happy she could go to bed.

This morning, after taking a shower her wound began to bleed again. He bandaged it up again and headed in to the hospital early this morning. They took a CT and have loaded her up with two bags of platlets. Her platlet count was down to '6' this morning. Very low for someone with a cut. We haven't heard anything back on the CT yet. Trish's eye is black and blue. She is in good spirits and feeling as good as she can.

I am worn out.

Sunday Afternoon Update

Sorry to make those of you who read my first weekend update wait so long for more news....

Well we saw the Opthalmologist and it was all good news. Trish is suffering from severe dry eyes. Her left eye shows lots of scratching and the right eye shows some. The eye doc put some numbing drops in her eyes and she could open them just fine. He checked and the effect is no deeper than the eye's surface. So that's about as good as it can get. They have taken her off the steroids for her eyes (FML) and she now must put an ointment on them every two hours till they feel better than 4x a day after that, natural tears 6x a day and an over the counter eye antihistamine twice a day. We'll do a follow up appt with the opthalmalogist a week from Wednesday and have our regularly assigned IPOP visit tomorrow at 12:30p.m. We'll also start watching her counts again, looking for them to come up. Looks like the chemo did its job, yesterday her white count was at 50. Other than the eyes Trish feels good and is much more stable on her feet than she has been in recent days.

At the moment I am writing this from Aunt Mary's back porch. It is a beautiful, sunny day with a cool breeze. Her wind chimes are playing like I have never heard wind chimes play before. They look like the simple wind chimes you would pick up at Home Depot or Wal-Mart, but they are playing wonderful music. I have never heard chimes play quite that wonderful before. The view from Aunt Mary's back yard is wonderful. Her house sits a top a high hill and down to the right is a horse farm, straight ahead all you see our trees ( I know there are houses sprinkled in there, but you can't really see them). At the front of her house, across the street, is the farm her son Ed works at with it's own rolling hills. It is so peaceful. Just sitting here and doing nothing.

The breeze not only feels good on my skin, but Aunt Mary has hung laundry between two trees to dry. For many of us this either seems old fashioned or just not an option. Today it is against the rules to air dry clothes in so many places. You must have a dryer. Aunt Mary does have a dryer, but she insists that it is better to air dry some things. I'd like to say that just watching clothes dry in the breeze can be therapeutic. We have all forgotten how to recharge and relax. I know, I have.

I bet if you really relax one day, even for a brief period of time, you will know too that what you have called relaxing up till than was indeed just an excuse for relaxing. Something to fool your brain into powering on through another day. Through more things you have to do. We have all learned how to cope with our need to relax and have forgotten how to relax.

Weekend Update

So remember when I said I was worried because Trish wasn't having any side effects from this round of chemo......You can forget that. As you know if you have been reading, after Trish's 6th dose of HiDac she developed cerebellum toxicity which resulted in loss of balance and slurred speech. Now she has intense eye pain, the drops that are supposed to help, hurt. She woke up at three am with intense eye pain. We were to have the day off today but instead are driving in and actually I am writing this from IPOP as Dr. Swenin calls the Wilmer eye institute to arrange for an emergency exam to insure that she is ok. So we will likely go from IPOP to Wilmer and than.... This is very frustrating to not be able to help her. She is practically blind at the moment. There are a number of yucky effects that could result from HiDac on the eyes. I guess the good thing is that she didn't have HiDac for her consolidation back in Jan 06 -- that was one of the options back than. I'll likely post an update when we are done later today.

Friday - Mid-Day and we are on our way

Dr. Levis left just a little while ago and we are just waiting on an IPOP appointment, a PICC bandage change and off we go to Aunt Mary's house. That's where we will continue our, about 3 week, wait. As we hope to prove that this latest round of chemo did more than slur Trish's speech and make her walk like a weeble (it's true, she wobbled, but didn't fall down -- just like the commercials used to say). Right around the 17th of May or so we should get another bone marrow biopsy. But for now it is time to load the car up once more as we take our next "baby-step" forward.

Stay tuned....

As with everything, so close and yet so far....

Trish has been doing great with this round of chemo...but when I came in today, she didn't seem quite right. Her speech was slurred and I had to ask her to repeat herself several times today. They are keeping her full of fluids and she runs to the rest room once or twice and hour to get rid of them. When she gets up she wobbles and teeters, I was nervous that she would fall. Right after I stabilized her se would walk to the rest room just fine.

We were ready to leave and I decided to follow Dr. Griffiths advice and tell the nurse to have her checked out before discharging us. Trish of course is mad at me for speaking up, but it was the right thing to do.

The nurse came in and tested her -- she was off, but not too bad. Than the fellow came in and tested her and she did ok....missed some of the queues. Than Dr. Levis came in and repeated the tests. He said that she was definetly having cerebellum toxicity from the chemo, but it wasn't bad, it was still pretty mild. BUT he didn't want to let her go home tonight. So, we will be in the hospital one more night. She is on full precautions, she can't get out of bed without some help. Dr. Levis also said that these side effects can last up to a week and should decrease each day. In the meantime, she will be on 80cc's of fluid per hour overnight to help flush her system.

If you are bored tonight, you will be much like Trish...Pick up the phone and give her a call. The number is to the left....Her speech may be a little slurred, but I am sure she would be happy to here from you.

Chemo Done - Praying and waiting intensify

Trish finished her last round of chemo this afternoon. They also snuck in a dose of platlets. The doctors missed her this morning in rounds, so Dr. Levis came back to talk to us late this evening. He said that Trish will receive lots of extra fluids tonight to help flush the chemo out of her system -- he apologized in advance for the many anticipated trips to the restroom tonight.

The first type of chemo Trish had this time (CloSi), may not have put her in remission, but it does a good job of killing her marrow. Her marrow never fully recovered from that treatment. Dr. Levis said if they had done another round of Closi her marrow may not have recovered. Normally the recovery from HiDAC (the chemo she is having now) is normally 20-24 days, but they are telling us it will be longer for Trish because of the CloSi and hopefully she will recover in 25-30 days (28 is the target, see the chemo calendar). So much for getting home anytime soon.

We should get released to IPOP tomorrow and we are expecting to stay at Aunt Mary's - I never heard back from the housing folks, but I'll check in and cancel the room if he has it. Trish will feel better and eat better at Aunt Mary's house.

Our insurance is starting to dip, hopefully we can move to transplant in the 28 days and not need any more pre-care. Healthcare/Insurance in our country is in need of serious reform. Not only is it a well protected lobby, but serious injury effects so few people in terms of percentages that it just doesn't matter to people. Think about how much money we are spending destroying and rebuilding Iraq and what that money could do in saving lives in our own country. Someone we have befriended in IPOP, is facing insurance issues already in their treatment. Because the insurance denied some meds (reached the dollar limit) they were going to release him tonight, the next thing his mother knew one of the nurses had intervened and they stopped preparing for discharge and he was getting his meds -- she's not sure how they will pay for it or whether the hospital is just writing it off. We should not have to seek out kindness, get lucky or create special attention to get the care we need to live. This is just wrong.

Trish's spirits are fairly well. She just wants to get home, see her boys, bake some cookies. I wouldn't mind eating some of her cookies and sleeping in my own bed too. Remember this is the short part of this battle. The transplant will be even longer or at least as long. This week of chemo has made Trish fatigued and tired. Her appetite has actually been very good for her.

Thank you all for your continued care, concern, prayers. We are still hopeful that we can win this battle.

Today is day 5

So after 51 days on the first chemo round, a few days of anxious waiting, we now find ourselves on Day 5 of what should be about 28 days of waiting. For those tracking the religious significant mile markers....Trish was first admitted on Ash Wednesday and her first chemo course lasted the 40 days of lent. Now her second round of chemo is slated to last until the Ascension. If we are lucky she will be clear and maybe they can rush her to transplant by Pentecost, but I am guessing that it will be later. I've updated/corrected the chemo calendar if you want to check the dates.

Dr. Griffiths is on call tonight and she stopped by to see us. She helped set us straight on what the calendar will be. She also, told us not to worry about the fact that Trish hasn't had many side effects, the proof will be in the blood tests, not the sickness.

Here's a bummer....both Trish and the donor will have to redo any pre-tests they did before. Just hope it doesn't dissuade the donor from making the donation.

Trish's 5th dose of chemo starts soon, the sixth and last dose is at Noon tomorrow.

University of Florida News: Quality of life a long-lasting concern for cancer patient caregivers

. (chip@dicomo.net) sent you the following University of Florida News
article.

Quality of life a long-lasting concern for cancer patient caregivers
http://news.ufl.edu/2007/04/10/caregivers/

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Monday - another round under belt

Next round is tomorrow night (Tuesday at about Midnight).....

I am almost worried that Trish is not having a rough time with this round of chemo, but I think it is normal....She is tired, has her usual headache, but not much else. She is restless. If you find that you are bored, give her a call, the number is posted at the left.

She'll get chemo at midnight tomorrow and again at Noon on Wednesday, than she may be released as early as Thursday. She is feeling so good that I think if we can get late IPOP appointments we can stay at Aunt Mary's house, but we have gotten on the list to check into Rockwell house on Thursday just in case.

It will be at least 25 days before we check her out. Her counts will have to recover, than we'll biopsy again and we hope to see that she is in remission. Once again each day will be an adventure. Hopefully this will prove to be the last chemo before transplant. Each chemo treatment takes away from limited insurance funds, and that has always scared me more than the disease -- the ability to pay for a cure.

Today was even hotter in Maryland - in the 80's, still less humidity than home. The trees are starting to fill in - should be full in the next few weeks.

Bring it on...Round two tonight

Today in Maryland was kind of like that scene from Who Framed Roger Rabbitt? The one where they are drving into the cartoon land and the sun is shining, the birds are singing (not to mention the plants and trees)....It was a beauiful day, the birds really were singing and the sun was shining minus the humidity of home. The temperature was in the mid 70's most of the day. Being a non-chemo day, Trish and I went for several walks today. Our first was to Mass in the Marburg conference room, than we went outside so Trish could enjoy the day, even though she had to wear her mask. It was a good day overall. Trish is due to get her next dose of chemo tonight between 11 and midnight, than agan Monday at Noon. So far, no devastating side effects. More than no major side effects, I am hoping that her blood and disease will do wha it neds to do, so we can move on.

Saturday - 2 doses down

Trish received her first dose of HIDAC last night -- at midnight. They had thought they would start it by 10, when at 10:30 they weren'y sure when it would be showing up, I went home knowing that Dr. G was on call and in the hospital. I slept in really late this morning. Trish called me and sounded really good. I showed up around 1pm and the second dosing of HIDAC was already under way. She'll get two doses every other day for a week -- than it is another 25+ days of recovery. So far no real bad side effects, but it usually takes a few days for them to kick in. If you have a chance give her a call while she is feeling good.

Trish is again in

Trish is all checked in and the chemo may start as early as 10:00pm tonight. I posted the address and the phone number in the left column.

Trish will be getting HIDAC -- High Dose ARA-C. This chemo can dis-orient you and disturb motor skills. So they test your motor skills and have you right your name before and after the chemo to determine if they have reached the toxicity limit. Trish's blood pressure is high for her tonight. It's been a little high all week, so marginally that we chalked it up to eating out this week.

In the April 9th issue of NewsWeek - one of the reporters who recently battled cancer wrote a great article. It captures much of the experience we have been going through. It talks about the insurance pain as well and tells the story of a person who sold his house to pay for his transplant -- in this way he kept his insurance active and didn't go into debt....Actually sounds like a good strategy, but not one that I think we will be able to follow. That same magazine (I believe ) talks about one of my favorite things -- Italian Easter pies...worth picking up a copy if you can.....

Dr. Griffiths is on call tonight and is checking Trish out and admiting her and will be around so I will leave soon and probably sleep well knowing that the A-Team is on call. I will bring her all her stuff in the morning.

Friday 3:30

Just heard word -- someone is being moved off of 5A so Trish can be moved on to 5A - but it will be two hours before the room is ready. So she should be moving in about 5:30 and I should have a number posted shortly thereafter. Feel free to give her a call -- If she's no up to talking she'll tell you or won't answer the phone. I am sure she would like to hear from some folks she hasn't heard from in a while.

Not sure if they will start chemo tonight or in the morning, but it will be soon.

Friday mid-day

We are waiting in the clinic area -- they were kind enough to order us lunch -- Trish's should be free -- we'll get a $17 bill for mine -- it's just a Blimpie sub, but you know it's from the hospital and all.....

The nurse spoke to the shift coordinator and she is confident she can get a room for Trish today -- just not sure when. As soon as they have a clinic bed available they will give Trish some fluids to help with her headache. It's not as bad as an LP leak would be but she is having post LP headaches and they are trying to think of things to do with her so we don't have to drive back to Aunt Mary's turn around and drive back. Her counts are holding and she doesn't need blood products.

I'll post more later, including the address and phone number of her room -- it's expected to be only 5 days in-patient though so you'd have to send any cards up quickly.

At least we have news......

But unfortunately, it is not good.

Dr. Griffiths called a few minutes ago. Trish's Wednesday aspirate showed 15% blasts, which means she is not in remission.

Tomorrow we will go into the clinic and get labs drawn and blood products if necessary.

Trish is expected to be readmitted Friday night or Saturday. She will begin a round of high-dose ARA-C over a planned 5 day admission. She will than be in IPOP for a 25-28 day recovery period - we will likely be required to stay in the Rockwell House for part of this time and if she is doing well near the end of that recovery period they will consider letting us be at Aunt Mary's and if she is doing really well maybe a short period at home.

When the recovery period is over, she will be tested again (bone marrow biopsy) to see if they have placed her in remission, so that a bone marrow transplant can be scheduled.

She likely will have to go through all or some of the testing we just did again. The only thing good about this new news is that we won't sit around waiting for a phone call tomorrow. Other than that it pretty much sucks.

With a 15% blast level it is likely that even the Hopkins doctors may not have moved forward with the transplant without some more therapy, so maybe the insurance company did us a favor by requesting another test.

By the way, Trish has been feeling great today post all of her punctures yesterday. We were able to go to cousin Tony's Lacrosse game and out to dinner with Aunt Mary and John, but we both wished it was one of our boys' Lacrosse games. That sucked too.

We need to remain hopeful and praying for good results. The next month could be very rough.

Annoying, Anxious Thursday

Nothing like waiting to build the anxiousness and keep you mildly annoyed at all times. Today we are waiting -- waiting for an email or a phone call to tell us something - anything....

We were supposed to be on our way home today. We have a Florida oncology appointment tomorrow and don't have one here. Trish will need to have her counts checked sometime soon if nothing else. Trish's immune system is low again (see yesterday's numbers) -- below what we were told she would need to come home originally. There is no sign (so far) that the Leukemia has returned and caused the immune system to come back slowly or ">bounce as it has been doing. It could just be Trish's body and it's reaction to the chemo -- which was pretty strong on the chemo strength scale. At this point we just don't know. Dr. Griffihs was going to consult with the attendings and try to come up with something to tell us.

Possibilities are stay here and wait for the insurance company to be convinced she is ready for transplant; go home for what now could be just a few days, before flying back for transplant or treatment.

We have completed all the pre-transplant tests, except for the dental exam required by the insurance. We have a dental appointment scheduled for next Wednesday in Florida. Just not sure if we will be there for it or not.

Stay tuned....If we hear something and we hope we hear it soon, we will send out another update.

Oh by the way, Trish is feeling great today. Slight headache, but it is definetly not an LP headache and she has more energy than me.



Trish's immune system

11am Wednesday

My blackberry is working again - so please forgive any strange spellings as I use it to provide this update.

The biopsy and LP went well. It was great to have Dr Griffiths do both. We just received her pre-platlet blood counts and it is not great news - whites are down to 340, hematacrit is at 30.3, ANC is down to 68

Dr G have us a pep-talk. If they are blasts she will get more chemo. If they still see less than 5 percent - hopefully the insurance company will believe them this time.

We are still in a position to win the battle and are not backed up to a wall quite yet.

We will head back to Aunt Mary's tonight waiting for someone to tell is what is next.

Not quite a good end to an OK day....

Trish and I continued plodding through our day of BMT pre-eval tests today. Her blood counts were still low (they dropped a little), but no bottle of reds needed and they delayed the bottle of whites (platlets) opting to give them to her tomorrow before her Lumbar Punture.

We finished up our day in a bone marrow transplant class taught by one of the nurses we knew from 5A. My phone rang during this class and it was Carolyn Coleman - our BMT case manager....than the day turned down...

Carolyn had given the insurance company the last bone marrow biopsy report and they said they wanted another one. The report does show that Trish is in remission which is defined as less than 5% blasts (click on the BMT link earlier in this article for more details on this definition and bone marrow transplants), but the report ended with ....."the marrow is consistent with recovering marrow and we can not rule out the return of Leukemia" -- Poor choice of words to end this pathology report with for us. You see, the insurance company will only approve the transplant if she is in remission -- which Hopkins says her initial report shows. Short of getting the insurance company to agree that she is in remission.....we are up the creek wihout a paddle. The only other way to get a transplant is to come up with a half million dollars cash.....

Trish will now get a BM Biopsy tomorrow in addiion to the lumbar puncture. I am not sure when or if we will get home before her transplant -- if we can even get the insurance company to approve the transplant. This sounds doom and gloom and well, it might be. We can only take it one day at a time and hope for the best. If Trish is determined to not be in remission, she will need to undergo additional chemo to try and place her back into remission, before we can proceed with the transplant. One of the reasons the doctors were so happy that she was in remission was that they know that second and successive remissions can be short....now it ma be delayed longer.....

I'll keep everyone posted, I think the only thing that could cheer Trish up now would be a trip home to be with her boys and a confirmed transplant date.

Monday Update

Our tests for Monday are done... We were up very early and at the hospital before 7 this am for a MUGA SCAN . We than had breakfast in the Weinberg Oncology building, bagels, while waiting for our 11am TB test appointment. They held off on taking blood today - so new new count information. We will get labs taken tomorrow and a whole lot of x-rays and CT's....Wednesday is still the big day -- lumbar puncture day.

One added element of fun. Trish thought she might have bit her tongue. The nurse took one look and said it was thrush. So we have to go back to the pharmacy later to pick up something for that.

The fun never ends....Stay tuned....I'll post an update on tomorrow's tests and we should have updated counts to post.

Some interesting articles

http://www.pioneerlocal.com/evanston/lifestyles/health_family/333678,on-survivor-041207-s1.article

http://www.suntimes.com/lifestyles/health/340354,CST-NWS-survive13.article

We head to a hotel tonight. Trish is a trooper, but she isn't feeling great. I think the doctors are very concerned that her remission will be very short, so they are happy the transplant is moving faster than they originally thought.

The next few weeks would be a great time to set aside a special prayer for her strength, for her doctors -- I know that we have a great deal of prayers and suport out there everyday, but this is going to be a critical stretch.

We truly appreciate all your love, prayers and support.

Friday Update

The day started pretty good. We got to IPOP early today and had a nice visit with Dr. Griffiths. That was the best part of the day....

Trish's counts held their own, platlets and hematacrit trended lower but that is to be expected and why we get labs every few days.....We were sent off to do the two pre-transplant tests and than cameback to IPOP for platlets and red blood. Everything was fine until the red cells were hooked up. Trish started getting hives. We think this was from the platlets, not the red blood. So they dosed her with more Benadryl and than the Benadryl caused her to be anxious, so they gave her attivan to relax her.....We'll be here a while tonight and back tomorrow to get the red cells that they stopped to avoid any further reaction.

It's not bad enough to be so stressed with way too many things to worry about -- but you must also be flexible. Trish's MUGA scan was moved from Tuesday to Monday. Because this and most of the other tests are scheduled at 7 or 8 am -- we had booked a hotel room downtown from Monday to Wednesday. We now have to extend that and will move into the hotel on Sunday.

I was planning on waiting at least 48 hours after the LP on Wednesday to see if Trish had a complication from the LP before we travelled. Dr. Griffiths says we should know of any complication in much less time than that. If all is well the earliest we could leave is Thursday night. Which would put us home friday afternoon if we auto-train it as we had originally planned. If we leave much later than Thursday we will likely fly home to maximize Trish's time at home. If she has complications from the LP we may not come home at all before the transplant -- it took them 3 weeks to resolve that issue last time around.

I've updated the chemo calendar to reflect what we know now, but it is always subject to change. The toughest thing on the schedule is the Lumbar puncture Wednesday morning at 9 -- the good news is that our favorite doctor has agreed to do the procedure. She really makes us feel like we donated a few million dollars to Johns Hopkins with the level of service she provides. If you still have that Hopkins address, send her a card and say Thanks -- I'm sure she'd love to see that she is appreciaed by those who care about Trish from around the world.

Have to shut down now - they are kicing us out of IPOP and we are on our way home to Aunt Mary's, but now we'll be back in the am.....

What a difference a day makes.....

Whew! Just when you thought you knew which end was up.... We got a call early this morning from Carolyn the bone marrow transplant case manager. Apparently while she was on vacation this week (until today) her stand-in had already submitted the dates for Trish's transplant to the donor's transplant center. The dates were all early May (we'll talk about them later). What this means is that we need to start testing earlier than originally thought and we might be home far less than we thought. It all hinges primarily on the date that the donor picks. Being the greatful recipients of a second chance at life that we are.....we are happy to be flexible.

So Trish will start her pre-eval testing tomorrow afternoon after what is her last IPOP appointment.

The testing will continue next week Monday, Tuesday and Wednesday. We should be able to head home Thursday or Friday next week. Check the Chemo calendar for tests and testing times as well as all scheduled events, dates, etc....

So, we have cancelled our auto train trip for Sunday. The Amtrak folks were very nice and will reschedule our trip pending space available for no extra charges. Depending on expected time at home though - we may need to fly. I was looking forward to taking Andy to the UF Legacy admissions seminar on Tuesday/Wednesday or Thursday night and now can't. Life is just not fair and the guy who started the "CANCER SUCKS!" pins had it right on.

For that matter the retired Protestant minister we met last time we were here had it right to. His wife also had Leukemia. He pulled me over one day needing someone to talk to... He told me that he had counselled, ministered several families who had gone through a diagnosis of cancer and that he was going home and writing them a letter of apology that night. He said he had no clue what they were going through and that nothing he said at the time could have possibly comforted them. It's that intense a feeling. You can only understand it by experience.

Back to the dates, They gave the donor the choice of May 7, May 8 or May 14th. Which means that the actual transplant for Trish will be May 7, 8, 9, 14 or 15th. Depending on the day the donor picks and how fast they get the marrow back to Hopkins -- we don't know where it is coming from.....

If the donor picks May 7th, Trish would need to be back on April 27 and start intense chemo on May 1st.

There's probably more stuff to say, but I am exhausted and have to get back to work and back home to Aunt Mary's.

choo! choo!

Dear Chip,
I have the final results of Trish's marrow, which I think looks good. I think we should plan to go ahead with the bone marrow transplant without any further therapy and that things are looking good!I hope Trish is feeling better. I've been under the weather the last couple of days, so I have not been to work, but spoke to Audra who tells me she is thinking of letting you guys go home on friday with a plan to come back in about 2.5 weeks for pre-transplant workup.I think this is a good plan, and I wanted to touch base with you and Trish and make sure, you think this sounds good too,
Hugs,
Elizabeth Griffiths.

This is how we got news of our coming home today! Followed by some one-on-one wih Audra -- the nurse practitioner in IPOP. We have booked Auto-Train tickets departing Sunday at 4pm and arriving in Sanford at 9:30 Monday morning. We will than drive the 3-4 hours home Monday morning. To insure Trish's sleep and clean environment for the journey we booked a full bedroom -- as full as it can be on a train anyway. It even includes a private bathroom.

I need to make some doctor and dentist appointments for Trish. It will be a short two weeks home, but we will be home, together.

White Bread

White bread, is it evil or good? Hmmm the health food folks would say eat multi grain, eat whole wheat, eat organic. I say eat white.

I never really understood why people called comfort food, comfort food. It never made me feel comfortable. I enjoy most comfort food, but it doesn’t make me feel good. I typically don’t get a rush of comfort from eating, so called comfort food. How about you? Does “comfort food” make you comfortable? Warm inside? Relaxed?

There are probably a set of foods that would show up in the “Family Feud” top 5 comfort foods. One thing I know is that it would vary with certain ethnic favorites. Can you name a food that makes you feel better when you eat it? Really feel better. Certain foods can indeed trigger good memories, but can they really give you comfort? Trish says comfort food is bad. She says it makes you feel good and you tend to eat too much of it. I am banned from eating comfort food. I must admit, that when presented with a perfect piece of Lasagna – the corner piece, with edges slightly darkened and crispy – I would tend to look for one of the other three corners to follow-up before considering heading to the dishwasher with my plate. I would agree with Trish that this practice might easily add a few pounds to me, but I don’t walk away feeling any better – just fuller.

Many of us, as we grew up, got dosed with the B-R-A-T diet when we were sick. If I remember this right, it stands for Bananas, Rice, Apple sauce, Toast. We were given each of these in succession as our stomach grew stronger and we could “stomach” our food better. I’m not sure if parents still follow this prescription or if doctors still prescribe it. I do have fond memories of highly buttered white rice, simple white toast. I didn’t realize how important these simple foods were until recently.

Each day after Trish’s IPOP treatments, I would make a single piece of white toast for her in the pantry of the hospital ward. I would clean my hands with Purell. I would carefully unwrap the individually wrapped single piece of white bread, trying not to touch it. I would gingerly drop it into the toaster. While it toasted, I pulled out two individually sealed tiny tubs of butter. I would pull out a clean plastic plate – from the middle of the plate stack to insure maximum cleanliness.

I than found the cleanest plastic knife in the drawer. I held the plastic knife over the toaster, because the first time I used the toaster the toast leaped to freedom and on to the counter – I threw that piece away. I waved the knife over the opening in the toaster, rotating the knife. My thinking was that in this way the knife wouldn’t get too hot and possibly release toxins in the plastic. Ok, Trish (and several others) would tell you I was paranoid – I’d like to think of it as protecting the one I love. The toast would pop, be saved from freedom by my waving knife and I would place it safely on the clean plate. I than buttered the toast carefully.

I had to walk anywhere from 10 feet to 50 feet depending upon where Trish’s treatment was that day to safely bring her a single piece of toast for lunch. In order to insure, no dust or an errant sneeze or anything else, landed on that single piece of toast, I would pull out four clean paper towels and cover the toast with all four pieces. I would wrap the corners of the towels under the plate and hold them down tightly. As I arrived bedside to deliver the toast, I would quickly remove the top and bottom paper towels and discard them. The bottom was likely contaminated with butter residue and the top was exposed to the HEPA filtered air in the hallway on my walk. I would give Trish the two middle paper towels to use as a napkin.

Despite my paranoid preparation, there was something special about that toast. The butter melting on the warm bread filled my nose with a smell of comfort. It triggered something in my brain that brought not only good comfortable memories to the surface, but it made me truly comfortable, relaxed.

Funny thing. Later, after I had been doing this about a week, Trish told me that she was surprised how good a piece of white toast can taste. It made her feel good.

Comfort food, indeed.

White bread toasted, lightly buttered.

Try some today.
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Wednesday is a big day. We expect to find out the results of Trish's bone marrow biopsy of last Thursday. We are hopeful it will be good and we will be on our way home (probably on Sunday). If it is bad, we may not be leaving at all. I won't be leaving Trish's side until we get some news -- even if it is just to wait to be told we will get no news. As soon as I am able I will make a posting and if we get significant news, as expected, I will send out the email blast. Make some white toast while you wait.

Hello, not much to report today. We have the day off from IPOP. If we get bone marrow results back we'll let you know -- otherwise we expect to get that back tomorrow - we hope. We also are hoping it is good news and we can come home before the transplant. Stay tuned and thank you again for your support.

Two of Trish's doctors will begiving this seminar (Karp & Smith)...
FREE Telephone Education ProgramLeukemia, Lymphoma, and Myeloma: Advances in Clinical Trials
Tuesday, May 8, 20076:00 pm to 8:00 pm ET (3:00 pm to 5:00 pm PT)Judith E. Karp, MD, Aaron P. Rapoport, MD, and B. Douglas Smith, MD, will present and answer your questions about emerging treatments and the role of clinical trials in the advancement of therapy for leukemia, lymphoma, and myeloma. The Leukemia & Lymphoma Society invites you to participate in this telephone education program designed for leukemia, lymphoma, and myeloma patients, their families, and health care professionals. There is no cost for participation. REGISTER TODAY Please be sure to include your name, mailing address, telephone number, and e-mail address.
Web: click here REGISTER ONLINE NOW
E-mail: LLS@cancereducation.com
Phone: call toll-free 1-877-264-4949, ext. 2
You will receive a confirmation supplying details of the program within 1 business day of registering.
If you would like more information on this or other programs sponsored by The Leukemia & Lymphoma Society, please call the Society's Information Resource Center toll-free at 1-800-955-4572.
This activity is supported by an unrestricted educational grant from:

Monday

Hello. So much for an easy Monday visit, but nothing really bad to report either. They have ordered Trish a bottle of white today (platlets). All of her counts are down slightly -- don't panic if you look at her Neutrophils on the chart early today, we are still waiting for the ANC count as of this writing and since I posted the other numbers the ANC looks like it is at zero.

Trish will get her bottle of whites, I'll grab some lunch and go back to work. We'll head back to Aunt Mary's. We heard from Dr. G this morning and she took a quick look at Trish's marrow and says it looks ok -- we need to wait for the chemistry (flow cytometry) to be done to know for sure what the status is. We should get this back tomorrow or Wednesday.

I am just praying that we get a clean bill of health to go home at the end of this week. I think that is the only thing that will revitalize Trish for the fight ahead.

I hope everyone had a great Easter yesterday. I cooked some pasta for Trish and cousin John and myself. Spaghetti (Trish's favorite), meatballs (frozen from the bag), salad and a Pepridge Farms Frozen choclate cake. A long cry from us hosting Easter dinner at our house and Trish's home made creations, but we gave thanks and enjoyed it just the same.

Happy Easter - Passover and Thank you

Hello everyone,

Trish and I are resting at Aunt Mary's today and we'll likely drive down to Baltimore to empty the apartment today and spend the rest of this week at Aunt Mary's. Trish is very tired, but happy they have taken her off some of the medicines that make her nauseous and sick feeling. She is very excited about the possibiity of coming home at the end of next week.

We just wanted to write to say Thank you. We have once again been overwhelmed with your love and support and have fallen far behind on writing folks back individually or thanking you each personally. We truly appreciate all the support you have shown us and will show us as we enter the hardest phase of this journey.

We are blessed by your love and friendship. May your holidays and life be blessed as you have blessed us.

Happy Easter and Thank you,
Trish, Chip, Andy and Matt

Good Friday

Trish's counts today held their own. Whites went up a little and ANC went down a little. Platlets were low, but that was expected. Platlets are the last thing to come back. So we are in IPOP at the moment getting platlets. We are planning on checking out of Rockwell House for Aunt Mary's by Sunday. Trish is expected to be in IPOP next week only on Monday, Wednesday and Friday. We hope to be on the auto train, plane or other conveyance for Florida by Saturday or Sunday of next week. We should hear on her marrow by Tuesday or Wednesday of next week.

We are planning on driving up to Havre de Grace later today to have dinner with her Mom and Sister.

Thursday Update - Biopsy is done

Welcome to day 42. Trish didn't feel so hot this morning because it was her first day on Vfend and you have to take a double dose to start (this is just a pill and it replaced the orange juice looking ambisome that we hate so much).

Dr. Griffiths showed up at 1 for Trish's biopsy. After looking at Trish's counts she proclaimed wih confidence that today's biopsy would prove Trish's remission. She said counts don't come back like this if you still have Leukemia in your system. I believe her. We should know something definite by Wednesday next week.

In the meantime, if you want to see some good looking line charts click on the counts.....Trish's whites are at 1050 and the ANC is up to 490. In fact tomorrow, we don't expect to get any antibiotics in IPOP -- just lab work and maybe some platlets. Her platlet count was only 15 today, 10 is the magic number when they give her some more. So I am betting our short Friday, might turn into a long Friday with platlets on tap. Guess I can watch the Gator victory celebration on the Sling box while they are downloading the platlets for Trish.

So, what does this mean? We are hoping that next week will be our last in IPOP and that we could go home the following week. I have made notes on the chemo calendar showing exact approximate dates for those who want to know. The first thing Trish asked Dr. Griffiths when she told her that it looked good for her to go home was "Can I go to work?" -- You hear that folks at the rock!? She wants to come back and work.....

Something tells me she will also try to do lots of baking too....

She'll only be back for two weeks -- tops from what we can gather (it is still early), she'll still have a compromised immune system and not much hair.

Dr. Griffiths says she checked the schedule and it looks like her donors marrow is scheduled to be harvested the last week of April or first week in May. So we won't have much time at home. Trish and I are looking at taking the auto-train home -- she wants to have her car home in case she wants to drive herself somewhere.

I borrowed a picture guide to bone marrow transplants and will try copying some pages and posting them to the web site for those who want to know more.

So for the moment all systems look good, we really won't know until we get the biopsy results and see what Trish's counts do next week. We are also hoping to move out of the Rockwell House and back to Aunt Mary's house on Easter Sunday (we'll confirm that tomorrow). Christ is Risen, indeed he is risen. Trish 40 days of penance looks like it will be exact. We started the chemo on Ash Wednesday and look to be finishing the recovery period on Easter Sunday. Wow - that's even better than eating a whole Italian Easter meat pie......

Late Wednesday Update

Trish was feeling really good today. We went up to Aunt Mary's to have dinner with Trish's Mom, Sister, Kristie, and cousin John. We headed to the official family restaurant -- La Cuccina. We started Trish's IV anibiotc tonight at 10:30pm, we usually start it at about 8:00pm. We were told to start it late tonight, because they scheduled her appointment late tomorrow, since her biopsy is scheduled for 1pm -- we'll go over for her regular appointment and labs at 11am, so we expect to sleep in tomorrow.

More good news, Trish's Nurse Practitioner stopped her ambisome starting tomorrow. This is the orange juice looking antibiotic that has never done well with Trish -- from a side effect standpoint. So we are happy to see it stop. If her Neutrophils go over 500, they may stop her vancomyocin too, yet another antibiotic and that means no more night time IV balls for me to hook-up and hopefully that will lead to us coming home for a few weeks before the transplant.

Up, Up and Away....

Trish's Counts are soaring today - her white count is up to 700 and the neutrophils are 420 - so we are getting there. Trish felt pretty good yesterday and we went to a late lunch/early dinner wih her Mom, Sister and Kristie. We went to DuClaws in Fells Pointe. Everyone did well on all counts.

Tomorrow is bone marrow biopsy day for Trish and than we'll get results about 3 days or so later. Not sure what the plans will be for the rest of the day. It's been raining all morning, but the afternoon is supposed to turn sunny and dry. I may let Trish go somewhere with her Mom and Sister and I'll try to get some work done during this time.

Championship Tuesday

Chomp...Chomp...excuse me, I'm just finishing my buckeye sandwhich.....

Trish is feeling pretty good today and her counts are starting to move up nicely. We're starting to make interesting patterns on the counts graph. Her Mom, Sister and Niece just arrived at the hospital. Trish may be feeling good enough to grab some lunch before resting again. We'll see. As for now things are status quo. I'm guessing they may give her some blood and platlets tomorrow, just to prep her for the bone marrow biopsy on Thursday, but we'll see.

Monday - Monday

Ok, it's Monday. More of the same....We were at IPOP by 8:30a.m. Trish's headaches were worse last night so they decided to try the morphine for headaches again....only problem is I went out of IPOP for 5 minutes and the nurse thought she got a regular push (injection directly into the IV tubes, like your giving a shot) instead of the over 5-10 minutes using the IV pump...So instead of instantly relieving her headache it made her instantly throw up. I came back in and explained to the nurse how she had gotten this and helped. She knows now.

Trish's counts are again trending up yesterday and today (check out "The Counts" on the left). That's a good thing.

After a week of meeting people who were doing real well with their transplants. We got some bad news yesterday. Someone we know from Rockwell isn't going to make. She's older (mid-late 60's). She had several complications including a bad Graft Vs. Host disease. We had dinner with her family last night in the Rockwell kitchen. As we always say and know, this can go either way, we just have to keep moving on for the best chance possible for all of us.

Trish is scheduled for her bone marrow biopsy this Thursday at 1:00p.m. -- the thing that stinks about that is that she won't be able to eat until after the test, so it will be a long day. Stay tuned, I need to join a conference call in a few minutes.