Sleepy Saturday

Mom is pretty sleepy today and as much as I'd like to blame it on the weather, I know it probably has a lot to do with mom's pain medication. We were trying to figure out how much Dilaudid she had over the last 24 hours (8mg), on top of the Valium 4x/day (5mg), and Fentinol (10mcg per hour) patch and its no wonder the poor girl can't keep her eyes open!

Mom needed platelets again today (thanks to the womanly problems) and received some more benadryl which does not help her sleepiness. They've been trying to keep her 'tanked up' with platelets to combat her continuous loss of blood. They've started her on a progesterone taper which should take care of her 'issues' in a matter of days. It does make mom a little crazy because she asked to see someone from OB-GYN three weeks ago because she knew from past experience it would not stop on its own.

Earlier today Dad visited and brought mom some spaghetti with homemade sauce he transported in on some ice. I hear mom had a nice helping of that! She did two laps with dad and rode the bike a bit. I took mom out on one lap, and it never fails she gets to talking with one of the nurses out there. The walk is tough for her, and the gabbing makes it even harder, but she finishes at a pretty fast clip and then comes in and crashes for a nap with some o2.
Mom's been working hard to get her calories up (minimum is 1000/day) so that they may remove the TPN. They will be hanging her nightly bag here shortly. I believe they've removed the basal rate of the PCA pump - but she's still able to press the button and deliver 2mg of IV Dilaudid every 10 minutes - yikes can you imagine?!? She's been trying not to hit the pump much in preparation for its removal. I think they will transition to oral meds tomorrow.

Nothing is in stone yet, but it is looking like mom will not be released on Monday. They are planning on doing an abdominal ultrasound to check on the womanly issues, which won't be done until Monday and a host of doctors need to come in and 'tie up loose ends' with her before she can go home. We're also hoping to hear the results of the bone marrow biopsy on Monday when Dr. Porter makes his rounds. We'll keep you posted.

Mom sends her love to all.

Here Comes the Sun...

As I sit here at HUP typing this I'm watching mom rest peacefully in the late afternoon sun that sneaks in through her window. Mom continues to have large doses of meds for pain and also is weary from some iv benadryl they gave her for a platelet transfusion earlier today.

Speaking of IVs, the "Christmas Tree" is down to just a few lonely branches - namely, the pca pump and TPN that is hung in just 12 hour increments. The rest of mom's medications are now delivered by mouth and she seems to be tolerating those ok.

The pain people plan to transition mom to the pain patch as opposed to the pca pump later today in preparation for her discharge. Mom's doing her best to eat so that they may soon remove the TPN, however, she's only been able to stomach a few bites of minestrone soup and a butterscotch krimpet. She says everything tastes very bizzare.

We did one lap around the floor today afterwards mom pumped up on her oxygen. She's been using the oxygen less lately, but still needs it for a boost before and after her strolls.

Mom's WBC is 1.1 today but ANC dropped a bit to 616. We are awaiting a visit from an OB-GYN to finally look into mom's continuing 'womanly issues.'

Mom says thank you for your blogs and cards and prayers and love. She can't wait to see each and every one of you. We're in the home stretch now so she is looking forward to sitting down with a cup of tea and seeing you all.

Sticks and stones will break my bones but names will never hurt me

Hello hello its the bad bad blogmaster,
I have noticed quite a few bellicose remarks about my weight comment. First and foremost i plead the fifth, took that from my dad's book. Secondly, I had taken some Vicodine (perfect scapegoat). In conclusion, I was trying to show the severity of the weight situation. Still do not see why women care so much, the petty nature of woman and their antics. I was just checking to see if you guys were still reading the blog attentatively. You know a little chin music, keep ya honest. You all proved me wrong.
Many of you have asked about my knee. It's ok very swollen and stiff. Does anyone on the blog know anything about how long this takes to go away. When will my leg not feel so bionic?
Jester is up for weekend and she said my mom's whitecount was up to 1.1 but the ANC was not given to us yet. The song of the week is Movin Out, no more HUP time, talk, jargin. Im sure you will get a post from jess soon.

Mike

Decontamination Day

Dear Fods,

This was the first day since early August that Debbie was allowed out of her room and she took her first lap around Rhoads 7. She is still in a lot of pain and heavily sedated, but her counts continue to rise and they are long overdue. Her wbc is .9 and her ANC is 828, so things are headed in the right direction. Debbie needs to start eating more and she will try some soup later tonight. Right now she is resting soundly after her lap.

The staff is still talking about a discharge and they are converting her over from IV to meds by mouth. She is still incredibly weak and needs oxygen when not on the move.

The decontamination means that I was allowed into the room without gown or gloves and we could touch, hold hands and give her a kiss. Again, all good signs. We will need some good instructions from the hospital on what we need to do when Debbie is home -- she will obviously need help until she gains more strengh. I will not even hazard a guess as to what day the discharge might happen and am trying to maintain a flexible schedule.

We are still waiting for the BMB results to tell us what is going on in there and what the future might hold. We will be going for one more lap soon and then try the soup. Thanks for all of the blogs and cards -- they certainly do cheer Debbie up.

Debbie sends her love to all.

Sorry for the late post

Hello Loyal FODS,
Sorry about the late post but it's mike here. My mom and I could not post a blog ealier today when I was at the hospital bc the website was down. My mom looked pretty good today, much lighter then the last time i saw her. She said she weighed 191 pounds, and to my understanding she was 215 not too long ago. I guess the lax's worked pretty well, good prep for me and joe's next bodybuilding contest :) Her ANC was 680 and the white count was .8. The anc fluctuation is normal according the doctors and gives evidence that the recent jump was not a fluke. The cat scan yesterday showed fluid near my moms hear, paricardioeffusion, and fluid near the base of her lungs, bipluraleffusion. She had an ecocardiogram today and that showed no signs of problems. I think this is why she still uses the oxygen because her capillaries in her lungs just can't fill with enough oxygen. Her womanly problems continue and thats enough on that subject. Her back pain was ok while i was there, but there were two occasions where she yelped. She still wouldnt use the pain pump, but me and joe encouraged her to use as we were leaving. Within minutes she was dozing off to sleep. She still is on a heavy dose of pain medicine, valium every 6 hours and still the dilauded. She said she did not get to rest very much during the day because people were in and out of the room. Shes pretty amped about coming home and is already giving orders about cleaning our rooms. Reminded me of when i was a kid, but this time i don't think im gonna be able to sneak out of it. Tomorrow she will be taken off the IV antibiotics and switched to oral dosages to see what happens before she comes home. Sorry if this is a little loopy but the vic's for my knee are kicking in and im winding down myself. Hope this fills you all in enough until she can dictate her blog tomorrow. She sends her love to you all.

Love you guys,
Mike

There is Some Good News and Some Bad News Today

Dear Fods,

We will start with the good news. My counts are finally headed in the right direction! The wbc was .8 and the ANC is 768. The wbc has not been this "high" since August 17th. This means that my immune system is finally limping back onto the scene. We have had steady progress on the counts for the past 3 days and hopefully they are getting ready to launch. The BMB results should come back soon and that will tell us what is going on in there.

The bad news is that I have a new back pain that is excruciating! They think that I pulled a back muscle and I am headed down for a CAT scan later this evening. I was in the bathroom @ 2:00 AM tending to womanly things (for 4 weeks now already -- God has some splaining to do here!) when I coughed and it felt like a thousand knives were jabbing into my back and flank area. Since it was in the middle of the night, they decided to treat it with pain medication, i.e., 3 mgs. per hour of dilaudid delivered automatically and another .5 when I pushed the pain pump. For the non-medical folks, that is a ton of pain medication, but down here they are used to dolling it out.

They reattached drain bag just in case there was something going on with the gall bladder. I am drinking my contrast for the CAT scan. They are trying to rule out an infection of the gall bladder and the surrounding tissue. The pain team spent a lot of time with me today and added 5 mg of valium 4 times a day to try to relax my muscles. I am experiencing leg spasms, but who knows what I did to my back. I do not have the strength to sit through an MRI which is what I need to identify the source of the problem. Joe will come down with me for the CAT scan.

Debbie dictated most of this and is now resting in preparation for the CAT scan. As always, she appreciates your blogs, cards and morale support. Hopefully, things can start looking better for her -- God knows that she deserves it.

Debbie sends her love to all.

We Got News!

Dear Fods,

I had Court today in Philadelphia and expected to have a nice "nooner" visit with Debbie and then return to the office for the afternoon. Court went in my favor, but not as expected, and I was able to be with Debbie by about noon. While walking across the bridge -- with the canvas bag in tow -- full of the supplies needed for 7014 -- I saw Dr. Porter in the hallway? He was talking to a colleague and I was on the phone to Amsterdam so we both nodded as we passed, and that was all from him.

When I got to Debbie's room, she told me that Dr. Porter wants her to go home next Monday!!?? Plus, he ordered up a BMB for the afternoon to see what is going on in there (Yikes!! -- we hate those!!). Debbie's wbc was .6 today, we never got the ANC, and she is still on a Christmas Tree of meds! How is this all coming home??? Apparently, if she starts eating, they will wean her off of the IV's and let her take these meds by mouth. They clamped off her gall bladder bag and are checking to see if it will start taking care of itself. If she spikes a fever, they will re-attach the bag and let it drain externally, but that will not keep her from coming home.

The BMB was to be arranged around my availability today (no kidding -- that is what they said!!) Of course, that is not what they did, but it was nice to hear that once. I said that I was ready @ 1:00 and they said they would come @ 3:00 and they came at 4:30 (HUP time). It was a good procedure for Debbie. She was heavily sedated by the time they started and we hit the pump about 8 times during the procedure. We will have the results later in the week.

I will try to arrange a conference call with Dr. Porter and the rest of us to understand what is going on here and what we need to be prepared to do. Debbie is desperate to come home and we would love for her to be with us -- but we will need a detailed care plan, med schedule and most likely, a ton of help. I think that there is not much more that Dr. Porter can do for Debbie @ HUP that we cannot do for her at home -- with the proper precautions in place. I am still hopeful that with time, Debbie's counts will recover. She will be much happier here for the Fall and the college football, the leaves turning colors in her backyard, visiting with her friends and to be close to her family rather than to be down at the HUP.

And that is all I have to say about that. I will tell you more after the conference call, and believe us when we say that we have questions.

Thanks for the cards and the blogs. There is a big pile of cards that we will read to Debbie tomorrow.

Debbie sends her love to all.

Weekend Update

Dear Fods,

Nothing much to report for the weekend. The wbc seems to be stuck @ 0.4 which is not encouraging. The ANC is up to 280 -- but the wbc is the concern now. They are reducing the TPN to only 12 hours at a time in order to help induce Debbie to eat on her own. We have the refrigerator stocked with jello and puddings, but Debbie does not have an appetite yet. You know we have been here long when we had to clear out the refrigerator of outdated stuff yesterday. They started Debbie on marinol today, which is the RX form of marijuana. This is also intended to stimulate her appetite and to control the nausea.

Debbie had a rough night and morning with, on top of everything else, she had girl troubles. They have increased the platelets in order to control this problem. Luckily, Jester came up at the nick of time and was able to help Debbie with her daily bird bath. She brought Debbie new PJ's and underwear so she looks nice in her bed today. New stuff is always nice. Jester also gave Debbie a pedicure so her feet look good as well. Hopefully, the rest of her will catch up soon.

Jessie will stay until around 4:00 today. She is delaying her departure to avoid the Orioles home game traffic.

If we did not tell you, Mike tore his ACL and his MCL and has started PT. Apparently, he needs to do PT before he can even have an operation if he decides to go the surgery route. He will go back to the doctors in two weeks to see how the PT is helping.

Debbie would like to see each and everyone of you, however, visiting is just too hard for her right now. She is very, very tired and drifts in and out of sleep throughout the day. Because of this, we ask that you PLEASE don't show up unexpectedly. Jester is in charge of all visitation privileges and you should contact her for any updates.

Thanks for all of the cards and blogs. We read them to Debbie when we can and that helps to keep her spirits up.

Debbie sends her love to all.

Just a BIt Better Today!

Dear Fods,

Although the counts won't show it, i.e., wbc .4; ANC 240, Debbie seemed a little perkier today. She was awake and alert when I arrived and had a new "proper" bike delivered to the room today. It is a sleek recumbant model with real peddles, a front wheel, resistance and a timer! Arranging the room to accommodate this goliath will be a challenge and we can either open the refrigerator or use the microwave -- but not at the same time. Debbie peddled for a little while today and spent 1/2 of the visit outside of her bed today. This was the best she was all week.

We caught up on three days worth of blogs today and she enjoyed hearing all of your kind words, poems, and jokes. Every time I thought that she was sleeping and finished reading a blog she would say, "who wrote that one?" and I would tell her the name. She was very alert today and I say that she was "present" for the readings which is the first time this week.

The gall bladder drain is working well although she is still very filled with fluid. Her BUN moved down today and that was good as well. If she is able to move around a little more and maybe use the bike, I think that this will help her lose that excess fluid.

Thank you for the cards and blogs -- we read them to Debbie when she is listening -- and sometimes when she is not. She keeps all of her cards in a basket next to her bed and I know that she looks at them over and over.

Debbie sends her love to all.

Day +41

Sorry for the late post today but Dad had to take Mike to the doctor's office for an appointment to discuss next steps with his knee. I'm blogging based on a short conversation I had with mom - although all our phone calls are quick these days. It is hard for her to talk for more than a few minutes at a time, poor girl is exhausted and on a steady stream of medication for pain. Our conversations frequently end with her drifting off to sleep and then realizing she's still on the phone. I try not to keep her long - I just enjoy hearing her voice.

Not much is new with mom today. Her WBC is 0.3 and her ANC is 240. Mom needed transfusions of blood and platelets today. She remains dependent on the oxygen and can only remove it for quick trips to the bathroom. The cardiologists performed another EKG today - which was normal - to follow up on mom's difficulty breathing. Everyone has determined that the shortness of breath may be attributed to fungal pneumonia. I don't believe there was a definite diagnosis, but the doctors began a new IV fungal antibiotic today to play it safe.

The doctors continue to try and stay on top of things and treat them as they come up. Everyone is working towards getting mom strong enough to come home.

We love you all.

Jessie

Four Candles

I felt compelled to share this site with you all - several friends have emailed it to me in the last week.

http://i.euniverse.com/funpages/cms_content/2529/4candles.swf

Love you all,

Jessie

Another Day at the HUP

Dear Fods:

This will be another short factual post about Debbie's day. She was scheduled for a CAT scan at 8:00 AM and they brought her contrast in by about 6:00. She called the house before we left for work this morning and had been drinking the contrast by that time. She was gone from her room for about 2 hours for the CAT scan. The results showed an enlarged liver, fluid in the lower lobes of both lungs, fluid around the heart, as well as the abdominal fluids, etc. None of this is good.

Deb's kidney function indicators (BUN and creatin) are on the rise and that is not good either. She was short of breath again today and is on O2 constantly. The cardiologists visited with Deb and said that they did not think that the fluid around the heart would become a problem. The shortness of breath is being associated with her fluid build up both in her body and in her lungs. She remains very weak and tired. Except for some minutes, she has been asleep while I was there all week.

The good news is that Debbie's wbc rose to .6. That is a good thing. There was no movement in the ANC @ 240. But the ANC @ 240 is much better than one @ 0. The doctors are still hopeful that this will blossom and that Debbie will recover -- but we are beginning to run out of time.

Debbie is very sick right now and she is at a critical crossroad. If we were to have a infection that the ANC @ 240 could not handle, we will be in serious trouble. Her major organs have been impacted by this course of treatment and we need some more good news in short order. Alternatively, if we begin to see Debbie's system take off, she could be in much better shape in a week or so.

Understandably, Debbie is exhausted and struggles to get some rest. There is a constant stream of people in and out of the room checking, delivering, reporting, hanging meds, taking blood sugars, blood pressures, temperatures, etc. I am thinking of installing our own padlock from 10:00 - 2:00 every AM and PM to give her a chance to rest. Wouldn't you think that they could get their stuff done in the other 16 hours??

The subject of visitors has come up many times this week and we discussed this with Debbie tonight. Mary Ellen and I asked Debbie if she would be more comfortable seeing visitors now or if the idea of receiving visitors would make her feel obligated to force herself to stay awake to "visit" with the friends nice enough to come all the way to HUP for a visit. She answered the latter. Anyone who has been there has seen Debbie try to force herself to stay awake when someone is talking to her, particularly a friend. While she would love to be with all of you, Debbie needs to rest now. So please, unless cleared by Jester -- we need to hold off on all visitations until Debbie gets stronger.

Debbie sents her love to all.

More of the Same

Dear Fod's,

Nothing much to report today. Counts have remained the same @ .3 wbc and 240 ANC. Spent 4 hours out of the room today for the Interventional Radiology procedure. They readjusted the gall bladder drainage tube and they say that they did what they wanted to do with it. Debbie is still retaining fluids and is very uncomfortable.

After they completed this procedure, they wanted to do a CAT scan of Debbie's abdomen and an ultra-sound. They are now concerned with Debbie's bilirubin (phonetic) which suggests some new/further complications with her kidneys and liver? They said that the scan was scheduled for 6:30 -- which we now take for a complete joke down here and we pushed back abit. They would have had Debbie out in the halls half the night waiting for 6:30 to arrive. Thankfully, our nurse, Nicole, was able to get the scan rescheduled for tomorrow morning, first thing. If anything could happen on time down here, the first thing is the best spot to be in.

Debbie is exhausted and is sleeping soundly. She was able to wash up after her procedure and get into fresh PJ's and sheets before falling asleep. Looks like more of the same for her tomorrow.

Debbie sends her love to all.

I am SOOOOO Tired!

Dear Fods,

Debbie's counts held today or went down slightly. Wbc is .3 and ANC is 240. No improvement today. We had meetings today with pain management to help Debbie control her abdominal pain. They have put her on a continuous dilaudid drip with a bolis that she can hit as needed. Her abdomen is still full of fluids even though the drain is continuing to drain. Debbie thinks that part of the problem now is with her kidney and liver functions. Her liver is now enlarged. She is still very uncomfortable and it is very painful for her to move at all. There were doctors with Debbie all day today and she is exhausted. She is sleeping now and has said her goodnight to the boys already. I have turned everything down or off so she can get some sleep.

Drs. Porter and Tsai approached Debbie today about beginning radiation/more chemo in order to start a second transplant procedure. They are of the view that the first engraftment failed because she was not immuno-supressed enough. We both find that too hard to believe. We discussed this previously and Debbie told them "NO WAY JOSE!!" Neither one of us believe that she could survive another round of chemo let alone now a round of radiation. Hopefully, her system will recover and we can go home -- whatever happens - happens.

Mike saw an orthopod this morning and had an MRI done today. He has a follow-on appointment on Thursday evening.

Debbie sends her love to all.

What a Day! What a Day!

Dear Fod's,

This will be a short factual post. I arrived at 9:00 AM today and Deb was still bloated and heavily sedated. Her drainage was working fine and she was feverless for the evening (a good sign that they have hit the infection point). Of course, this new incision has its own discomforts, however, it seems to be doing what it is supposed to do. Poor girl looks like she has Guiness draining out of her and she never drank a drop of it!

When not sleeping, Debbie forces herself out of the bed and had a "bird bath" sitting at her sink trying to freshen up a bit. You have to give her credit for her perservance even thought she may not remember any of this. With the incision and the Guiness draining out of her, we went through sheets and three sets of PJ's before noon today. Deb's new washer and dryer are earning their keep this week. Jester arrived at around 11:30 and she stayed with Debbie until around 3:00.

For the important news. Debbie's wbc was .4 and her ANC was 240! (MayDay -- that means "absolute neutrofil count" -- I don't know what it is either but when you get to 500, you can come home!) hgb held today and platelets were fine. We think that Debbie is rallying -- albeit as Debbie -- but she is rallying and we think this is good. It will take a few more days for her to recover from the procedure, lose the fluids and start to feel better. Hopefully, we have rounded this corner and Debbie will be able to come home again.

Shortly after Jester arrived, Mike called to tell us that he would not be able to visit today because he had "blown a knee" in the first game of his adult soccer league. Long story short, we spent the afternoon in Grand View's ER getting X- rays and a knee immobilizer and pain medication. We were home in time to see the Eagles lose and everyone at Grand View was very nice and pleasant. He will have an MRI tomorrow morning to see if there is any ligament damage. He is in a lot of pain and cannot put any weight on his leg, but I think he will live to play another day. That said, it was somewhat liberating for him to use his own insurance card for this ER visit. He even has a better drug plan than we do!

Debbie sends her love to all.

Debbie Will Not Remember Today

Dear Fod's,

This was a very hard day for Debbie waiting for HUP to do the procedure that would relieve her abdominal swelling and ever increasing pain. We are covering our girl in shifts today. When I arrived at about 10:00, Debbie was heavily sedated and sleeping soundly, but when she moved at all, she was clearly in pain. The nurses kept encouraging Debbie to use her pain meds. and they brought her some special meds that kept the pain at bay. My comment to the nurses was that Debbie's belly was not this large since Mike was in there! On top of all of this, she now has a rash going!

Finally, they took Debbie down for the procedure @ 3:00 PM and it should be completed shortly. Part of the reason for the delay was that they needed to get Debbie's platelets above 50K before they could do the procedure. In order to get the correct level, they had to hang two bags of platelets and she went down for the procedure shortly after the second bag was done. Jess and Joey were with Deb when they took her to Interventional Radiology and they will make sure that she is safely deposited in her bed with clean sheets and comforter. Mike will leave shortly to take the last shift to make sure that Debbie will be comfortable throughout the night. We will resume the vigil tomorrow. Hopefully, this procedure will relieve Debbie's discomfort and let her immune system concentrate on its comeback.

Did I mention comeback?? The fact that Debbie is having this discomfort and swelling suggests to the Doctors that Debbie's system is fighting to come back and is now distracted with the gall bladder. We have been told that everything with the donor is now on hold for the moment. It does appear that there is an immune system building within Debbie. She has had an ANC for the past two days -- but they tell us that what we are seeing is like measuring a feather on a bathroom scale. While they tell us that we should not put too much stock in these readings, if these readings are correct, they suggest that her system is 90% Debbie and 10% donor. This suggests that the graft has failed and our best case is to get back to where we were before the process started. If this is true, the decision to go with the "mini" was spot on and what has survived through this ordeal is the tough ole Italian that went into the fight! Of course, we will be happy with whatever we get back home to 912.

Jess just called and the procedure was successful and Debbie is in recovery now. She should be back in her room shortly and #3 has just left to help insure that Debbie has a peaceful night.

Thanks for all of your blogs and cards -- they help Debbie to stay connected and to continue her fight.

Debbie sends her love to all.

P.S. to Mo: Please do not try to make a living on your forensic writing skills. Bob will get very hungry!

Love,

J

More Complications

Dear Fod's,

Another night of 104-105 temperatures. Just can't catch a break from this. No white counts and spent most of the day going to and from the Nuclear Medicine Department for scans of my gall bladder and liver. They originally thought that a possible source of the infection was a burst cyst in my liver because of the PKD. While the liver is enlarged, there were no other abnormalities. What they did find, however, is that there is a stone stuck in the bile duct of my gall bladder and this is now full of fluid and the likely source of the infection. This is called cholecystitis and the normal procedure would be to remove the gall bladder -- but that is not possible in my condition.

We are waiting for interventional radiology to arrive to take me down to have a procedure done where they will insert a small tube into the gall bladder and attach a drain to allow this fluid level to go down. It is less invasive than a removal and just as effective. The gall bladder will have to be removed when my counts recover. This drain can remain in place indefinitely. They will test this fluid to precisely pinpoint the type of infection and then administer the correct antibiotic to clear this all up. Hopefully, this will get rid of my bloating and abdominal pain. Because it is minimally invasive, there is not a big risk for infection.

Jessie came up for the weekend and spent the day with me and helped me on my various trips to and from Nuclear Medicine. Joe and Jess will stay here with me until the procedure is completed. Hopefully, this will give me some relief from the pain and the fevers.

Thanks for all of your cards and blogs. They help to keep me going through this terrible ordeal.

I love you all.

Debbie

P.S. Interventional Radiology is here now and they will do the procedure tomorrow. Looks like another tough night.

DAY 34..AND STILL WAITING

My dearest Fods, Cods, and whats a Rod again?,
Mikey's here typing for me and he just read me the blogs. Im still too weak to even carry the computer. The pain symptoms continue and fevers of 104 for 16 hours straight!!! Still very bloated, running to the bathroom every hour, just to wee-wee a few drops. Now I have a new rash over my face, chest, and back. So I had a very busy day. They finally got the infectious disease guys on the case and they seem to think that even though the cat scan was negative, you won't see an inflammatory site because there is no white count to see one. They think there is a small cyst in my liver that may be abcessed. Im going down tomorrow for a liver nuclear test, to see if they can highlight my liver. The doc said that would account for my constant nausea, bloating, and abdominal pain. So they restarted me on gentamycin, which is a very strong antibiotic which can be damaging to the kidney's. The doctors will be keeping a very close eye on this. Now on to the big news

As i told you yesterday, the donor is willing to donate cells, which will arrive on the 27th of sept. Dr. Porter feels that the reason this first stem cell was likely rejected because i was not immunosuppressed enough. I beg to differ!! So he would like to give me several days of more chemo and one day of full radiation before i recieve the new donor cells. I don't fully understand this, the reason i feel so crappy is because i am so immunosuppressed. I cant imagine being even more immunosuppressed. Iv agreed to the chemo but have to think about the radiation. This means I will be in the hospital another 6 more weeks. That is just too much for me to think about sitting in this room for another 42 days. I said only half jokingly that i wanted to sign myself out AMA. As he pointed out that the six antiobiotics, TPN, Tac, and slew of other IV goodies with no white count, would surely do me in. So I'm stuck between a rock and a hard place. Meanwhile other transplant patients that were in our class have gone home, and the girl next door who was only 32 sailed through her conventional transplant. So here I remain. Still not able to eat due to constant nausea but i am able to take pills and drink fluids.

The lighter idea for 5 o clock prayer time was a great idea, but please don't anyone do while there driving or filling up their gas tank. (Esp you, Ms Allison). I love you guys so much for your humor and kind and gentle words. Still not smiling, but Iv got myself into thinking one day at a time. Who keeps telling those jokes??? Mo, I sure hope Joe is doing better and will be out of the hospital soon. You must be sick with worry with Joe and Bob being home alone. Although he sounds like he is pretty stable these days. Thanks for all the comments on the grandkids, aren't they so beautiful. I do picture them foremost in my mind when i list things to live for and fight for. Thank you for continued loyal blogging prayers and cards that you keep sending my way. I LOVE YOU I LOVE YOU I LOVE YOU.


Debbie

Guys -- There are No Smiles Going Around Today

Dear Fod's,

It was another tough night @ HUP. Fevers up to 104, rigors and a dark trip for the CAT scan. Needless to say, I did not get much sleep last night and was very tired today, stayed mostly in bed. The CAT scan results were fine, meaning there were no fluid pockets or other abnormalities. But the pain and bloating continue.

Right now I am out of bed talking to my friend Kava who came up to read me a poem and to visit with me. She is the interfaith HUP pastoral minister. She does so much to help me and to lift my spirits. We shared a cup of tea (thank you Donna K. it is delicious) and we visited a while.

Still retaining lots of fluid in my abdomen and legs making it difficult to breath and to get in and out of bed. I am +1,000 cc's on this shift alone. They cannot cut back on the fluids because I am on 6 different antibiotics, TPN and the tac (anti-rejection drug). If I could just eat something, they could take the TPN off but I still cannot swallow solid food.

I am not smiling too much today. ANC is still 0 at day 33 -- which is not good. I know you guys think that I am being brave, but I am really not these last few days. I cannot even listen to myself talk because all I do is complain.

A few minutes ago we got some good news. The donor is willing to re-donate some bone marrow, if it becomes necessary. With all the shots, testing and harvesting -- that won't be completed for another 2 weeks. Today is 6 weeks in the hospital and the thought of another long stint is more than I can handle right now. Hopefully, my own cells will finally get into gear here and we won't need the donor, but God Bless her for continuing to offer to help me.

Thanks for corresponding on the blog. I may not answer everyone individually -- but Joe reads them to me every day and I take joy in hearing about your daily lives. Thanks for staying in touch with me. As you know, I am still not answering the phone because I am too tired to talk.

I do hope that you are all well. Beth, I hope your sore throat gets better. Mo -- sorry about your Dad and hope that he gets well.

Thank you for all of your blogs, cards, and kind wishes.

I love you all.

Debbie

Sending SMILES to you TODAY!

Stillllllllllll Waiting!!!!!!!!!!!!

Dear Fod's,

Hi everyone. Again more high fevers and rigors -- upward to 104. Now new abdominal pain and bloating. Making many trips to the bathroom with loose bowels and leaving the bathroom feeling like I am never done. Very uncomfortable. Still not able to eat so the TPN continues to run. This means my sugar levels are elevated and I am getting insulin to control it every 6 hours.

WBC fell back to <0.1 again today and an ANC of 0 but Dr. Tsai was giving me encouragement because the preliminary bone marrow results showed immature new cells which are now being formed because of all of the neupogen and other growth stimulating meds. While there is an outside change that this means more leukemia, I don't believe that to be the case because I was too good coming into the hospital. He said that the BMB people need more time to study the results before we get a final ruling.

Blood cultures continue to show gram negative rods and the most likely source is the gut -- which is bloated and painful -- so yes, that is my vote too. They are scheduling a CAT scan of my abdomen for tonight in order to help to identify the source of the infection. Still have a sore throat but am able to swallow liquids. Solid food is not yet on the radar screen. Too tired to answer blogs tonight and am going to lay down now.

Thank you for all of the love and support.

I love you all very much.

Debbie

Still in a Holding Pattern

Dear Fod's,

Hello everybody. Another night of high fevers 104, but no rigors. Have to be thankful for the little things. The blood cultures showed gram negative rods which means that there is some kind of an infection floating around in there, but it is not specifically identified yet. They have started new antibiotics and hopefully, we will stay out in front of this one. The doctors keep reminding me that the last time that I had this, I ended up in ICU. They say that I have a strong constitution. Still nothing on the BMB yet. Since it was done on Thursday, the weekends don't count, and they are a few days behind. They are hopeful to have some results tomorrow.

They did some special blood tests today (an engraftment analysis) to see if the engraftment process has started. It will take a few days for these results to come back as well. My wbc is 0.2 which I am taking as a definite positive movement. Dr. Porter cautioned me that the count could go down tomorrow so don't get too excited.

Dr. Tsai is back on for a 2 week rotation and he is one of my favorites. He was the first one on my case when I was admitted back in December. Hopefully, he will be the one who writes my discharge orders!! He said that part of the reason why I remain so immuno-suppressed is because of the meds I have taken and the infections I have had. No news from the donor as to whether she is willing to donate anymore. This time, they want to take her bone marrow which is a trip to the OR, which is a huge commitment. So we don't know where we stand with her.

So how about that PSU / ND -- I was really pulling for PSU because I am still mad about ND firing Ty. The O'line looked very much improved from the game the week before. I was happy for ND but sad for State. But hey, this is only the second week of the season. It ain't over until the fat lady sings.

Lizzie K -- thanks for your note that says no single second is unbearable. Bev -- hoping things are well with Jen. Cathy G -- thanks for the pictures. You all looked magnificant. So sorry that I missed it. Who is the jokster! They make me lol. Donna Tea Bags, hope you had a relaxing time at the beach. It must have been so nice just the two of you.

To answer the current question: I met Joe when I was 14 and he was 15. We hung out in the same group of friends. My first real boyfriend was Greg --blogger Beth's husband -- who was neighbors with Joe. But alas, Greg was too sweet and kind for me. Joe was the bad boy and I was instantly attracted. He dated several of my friends before he got to me -- but then he was my first official date on my 16th birthday. And the rest is history. We dated through high school and college -- with a brief split in nursing school to sow my wild oats, but then came crawling back to Joe. But through thick and thin, he has been the light of my life and my true soul mate. We are very different as in opposites attract, I guess. Me being outgoing and social and he being quiet and a loner. But there is noone I would rather spend time with. So this is a great question and should make for more interesting reading.

Sorry I am not answering the phone or up for company. I am a little down in the dumps, but with some more wbc climbing, I will feel better soon. I know that you are all with me in the middle of the night when I am having these fevers. Thank you for all of your love and support.

Hope all is well with you and your families.

I love you all.

Debbie

Feverish Night

Hi all,

After having a brutal night, fever max of 104.6, where they drew blood cultures, chest xray and UA again, I was rigor-ing out of bed - I am feeling better today. I used the dilaudid drip overnight because of the aches and pains but haven't used it at all this morning. I spent a little bit more time out of bed today. ANC is still ZERO but the WBC is 0.1 - which could mean nothing - but could be the beginning of my comeback. Let's all pray this is the new beginning. I should have BMB results tomorrow and I'm anxiously anticipating them. Did I tell you that Dr. Milard said if I'm rejecting the donor cells and the donor is not available they will reinfuse with a new donor? I told him I don't think I'm up for that. God knows how long I'd have to stay in the hospital then - but probably a few MONTHS more. So I can't think about that right now, back to the old mantra, ONE DAY AT A TIME and there's no place like home. Needed a unit of blood today so that should perk me up a bit.

It's been wonderful having Jessie here. She pampers me like you wouldn't believe - back rubs, foot massages, files my nails, and is just the best company. We watched the ND PSU game together and I guess I was rooting for PSU but in the end I'm glad ND won - they played a better game. ND looked like a different team from last week, the O-line was MUCH improved. The boys will be down later today as will Joe. Joe visited the beach house last evening due to the heavy rains the shore had last week. He only had partial electricity when he got there so the electric company had to come out and fix it, which they did.

Cathy G, I can't believe you posted a comment last night after the wedding! You crazy girl, didn't you just want to drop into bed? I look forward to seeing the pictures soon - I know you are all busy. COD Eileen, have fun in Tuscon at your needlepoint convention.

About the sound, hands down - sitting in my deep bath tub at home - 1 and a half person jacuzzi - what exactly does that mean 1 and a HALF person? Me + a toddler? I love to sit in the tub and listen to the rain or be in bed at night and hear the rain fall. My favorite thing. The sound of the creek bubbling in the backyard after a hard rain and of course I love the sound of the ocean too. Very peaceful, tranquil sounds to me. Rain just sort of happens - its not angry or violent like thunder and lightning. Thank you again for all your blogs, cards, prayers, and well wishes. We'll keep you posted for BMB results.

I love you all.

Debbie

Congratulations Sarah and Cyrus!

Congratulations to Sarah and Cyrus for getting married today at 5pm. How I wish I could see them walk down the aisle, having been to four of the other weddings. All of the Goodyear girls look like models and everytime I see them together I'm taken back to when they were babies. It's a beautiful day we wish them much happiness and joy and a joyful life together.

Lee's mountain girls, hope you're having a good time up at the lake. It's warm so you must be able to do lots of water events. Anyway tried dropping off the tree from the rope? Seriously, us older folks shouldn't be doing that and Bev, you shouldn't even be hiking with your hip, foot, and back surgery! Wish you fun fun times, lots of laughter, and good food.

Jessie's been here since yesterday and is typing this for me today. It is so nice to have her here although I'm sleeping most of the time. Even with weening the dilaudid I can't keep my eyes open. They started me on an additional growth stimulating factor so along with the neupogin which stimulates granuolcytes, this new one will stimulate macrocytes. Still no white count or ANC and no results from the BMB. Dr. Milard said they are hoping to find ANY stem cells in the marrow - mine or the donor's. Of course if they just find mine that will mean the transplant was ineffective. They are hoping to see a percentage of the donor's cells (engraftment) which can happen in the marrow before it becomes apparent in the blood stream. So the bottom line is, sorry to say this, but I still feel like crap. EVERYTHING hurts, I've been running a fever for four days, 100.4 is the max. The doctors don't think its an infection since my UA and chest XRay were clear. Still waiting for the results from last night's blood cultures.

I appreciate your blogs and your faith in me and my ongoing strength. If you were here with me, you'd see I'm beginning to unravel and getting quite weepy. I just want to go home, that's become my new mantra. So we'll see what Monday's BMB results bring and if the donor is willing and able to donate additional stem cells. Please continue your prayers and I'll continue mine. I have to get back to the 'one day at a time' mantra. Thanks for all the cards, prayers, and blogs. Be assured someone is reading them to me every day.

I love you all.

Debbie

Im getting tired of this!!!!!!!

Dear loyal, fods, cods, gods, and rods,
Mikey is typing this for me after he read all of the blogs. It took awhile because i kept nodding off to sleep. I so appreciate your stories and chants and songs that you have invented to bring on the wbcs. White count is still less than .1 and ANC is 0. Blood and platlets are stable for now and will probably need them tomorrow. I am so overcome by fatigue i can't begin to explain it. I have to drag myself out of bed to even sit in the chair, but I am still doing 10-20min on the bike and my leg lifts. After the exercises, I have crawl back into bed for a quick nap. I asked the doctors to remove the continuous dilaudid drip. The doctors were hesitant because my throat was so inflammed. They also said if I got gastritis or worsening of the esophogitis it would be in order to have the dilaudid on hand. So now i just push it when i need it, but do not have it continually. It has completely confused my bowel and bladder, I dont even go when i sit down. It takes me twenty minutes and running water to get my started. I am so glad that you picked 5pm for our gathering prayer. It was nice of alison to suggests a few moments of silence for me. That was the exact time that I have the bone marrow biopsy yesterday and I think your prayers helped me through the procedure. So i am not being a defeatist (is that a word??) Just tired tired tired.... Bev I loved your story about the white rabbits at the goddard school. That must be a sign... I am glad jen is staying healthy, she is in my thoughts and prayers everyday. You girls have a great time at the mountains. It will kill me not to be there but definately another time.
As for tomorrows big game between the Lions and Irish, I am definately rooting for the Lions. I am still made at ND for firing Ty. (my mom just nodded out and was talking about the Chiefs running back...maybe an LJ omen about the lions...WE ARE....PENN STATE....)
I am hoping to recieve preliminary results later on today about the BMB, if not I will have to wait until monday. I will keep you all posted and thank you again for all of your love, thoughts, and prayers.

Love, Debbie


ps: LETS GO STATE
To Rick and Bob
Watch for a fly pattern to D-Will. ND hasn't seen that kind of speed since reggie bush. Last time i checked bush had 515 yards of total offense that game.

Waitin' for a Good Day

Dear Fods,

Doctor Porter and Heather visited Debbie this morning. They are concerned enough about the delayed counts that they are now working on a Plan B. They have contacted the original donor to make arrangements for an additional donation in the event that the first infusion turns out to be a failure. They believe that we should be seeing Debbie's counts come up by now, but they also acknowledge that Debbie's system has always lagged behind, and it could just be a matter of a few more days. But they do not want to take any chances.

To get further insight into the engraftment process, they decided to do the dreaded bone marrow biopsy this afternoon. Evidence of engraftment would present itself in the bone marrow some time before it evidences itself in the blood. If they see evidence of engraftment in the marrow, they will stay the course. If not, they will go to Plan B. This seems like a prudent course of action.

Needless to say, Debbie was not happy about the biopsy and I was able to rearrange my schedule to be there for the procedure. Her biggest fear was that the new "Fellow" named Rebecca would not have the strength to deliver a pain free procedure. Deb put her medication demands in well in advance of the procedure and was getting pretty relaxed by the end of the biopsy. We are very glad to report that Debbie gave Rebecca the Silver Medal, behind only Dr. Porter, of Gold Medal fame, for the most pain free biopsy. Now let's hope for good results!

The meds had fully kicked in by the time I left and Debbie was resting comfortably under her quilt and in her own sheets. She endured another painful day and is the epitome of a "trooper." Let's hope for a good biopsy so that we can forget Plan B and that things turn around soon.

Deb sends her love to all.

Getting A Little Concerned Down Here

Dear Fod's,

Hey everybody. I am still too weak to write or use the computer. I wait for Joe to come down and then he reads the blogs to me and we post a new blog together. Wish I had better news, but the severe sore throat and esophagitis persist and I can only swallow a few bites of pudding or soup, so the TPN continues. My blood sugars were a little elevated today because of the TPN and they gave me insulin to counteract it. A speech pathologist came to see me today and she assured me that when all of the swelling goes away, I will be able to swallow effectively again.

ANC is 0; the WBC <0.1 and this is getting to be a worry, because my marrow should be recovering by now, engrafting of the donor cells should be taking place and my numbers should be improving by now. So I needed 2 more units of blood and 1 package of platelets today. I am trying not to get into a panic about this but it is day 25 post stem cell transplant and no white count for 20 days -- we should be seeing something by now. They are going to wait until Monday (easy for them to say) and if we don't have anything going by then, they will have to do a bone marrow biopsy to see what is going on in there. So let's kick up the prayers another notch because I sure am not up for another bone marrow biopsy.

The doctors keep telling me that there is nothing "mini" about this "mini" transplant and I must agree. The isolation doesn't even bother me any more because I am so wiped out that I couldn't deal with company anyhow. So bear with me while I am turning down your offers to visit and turn the phones off, but I am just too tired.

Sleep is becoming a problem at night now too. I am starting to haullcinate at night and I wake myself up talking to people who are not here! I had a conversation last night with someone sitting in the chair -- and of course no one was there. I am aware that I am doing this and quickly reorient myself, but it frightens me none the less. Actually last night, I took comfort in my ghostly visitor. We talked about having a party and how to decorate a house. Of course, what else would it haullcinate about! Had Angelina not taken Brad, perhaps we would have had something else to discuss! But for now it is just back to basics -- food and decorating. This is probably the dilaudid, but the doctors still want me to continue taking it for pain control. They say that so long as I can reorient myself, they are probably just harmless dreams. Funny that I cannot talk to you on the phone all day, because now I am talking to ghosts all night long and am worn out by 6:00 AM. Ha Ha.

Still too tired to respond to the great blogs you are sending, but know that I laugh out loud as Joe reads them to me. The condom joke was a hoot -- who sent that one?

I love you all and we will try to post again tomorrow.

Love to all.

Debbie

Still Tired and Very Sore

Dear Fod's,

So sorry for not posting yesterday, I know that you must have been worried. I made Joe take the day off to rest and so that he could attend the wedding ceremony (it killed me not to be there too). I was just too weak to read the blog and tell my story.

The sore throat (understatement of the century) persisted with pain down through my esophagus and by Sunday I could not swallow pills, drink or eat so they started the TPN. The TPN requires q 6 hours blood sugar checks with insulin coverage as needed. I also had the ENT docs in and they scoped my throat to get a better look @ 10:00 PM! (HUP time again). It showed esophageal erosion and swelling around my linguinal tonsils. So, they switched all of my meds over to IV and insisted on turning the pain pump up. I was afraid to take too much pain medicine that it would make me constipated (which it did) and too sleepy and that I would get pneumonia if I just laid around all day. So for the medical people out there, I am getting .5 mg dilaudid every hour, and then I have the button in between. If I don't push it, the nurses push it for me.

The mucousitis and esophagitis are to be expected and are a side effect of the methotrexate and day 19 of no white count. So we have to really pray for a white count, because nothing else will make it better and I do not want to take steriods because they interfere with the stem cell engraftment. But if my airway becomes compromised, they will have to use them anyway.

Got blood and platelets both yesterday and today and I am laying around more than I would like to, but I have very little energy. I promise to answer the phone as soon as my voice gets better and I look forward to some visitors once this has passed. I am trying to keep moving around in the room and am taking short naps and working out on the bike. I did 30 minutes on the bike today and I am beat. It must be nap time again.

Sorry I am not up to commenting on your blogs. Joe reads them to me and they bring me so much pleasure to hear about your daily lives. The WBC has got to be just around the corner.

Linda M, thank you for posting. I think of you all the time and your good attitude throughout your ordeal. Knowing that you have been there gives me strength.

Love to all

Debbie

Too Tired Today

Dear Fod's,

Still no WBC and the throat is still very sore. They increased the pain medication and I am able to swallow a little bit, but this has got to go! It was either increase the pain medicaiton and try to eat or they were going to TPN me. Joe made a little split pea soup an I was able to eat a little bit for lunch along with a small serving of rice pudding. Because of the pain medication, I am really wooosie and unsteady on my feet. Normally, I am showered and out of the bed by 8:00. Not so today -- I waited for Joe to come before attempting a shower, just in case I hit the bricks! The shower went fine, but that is all it takes to wear me out.

I sat on the chair and Joe read me your blogs, they are such a hoot and they make me laugh. I was nodding in and out of the readings, but think that I got most of them. It is simply amazing to me that Rick had such a life of perilous excitement living in Warminster! Some day Joe will tell you some real paperboy stories before the Territories were settled and before he went to live in the woods.

Jester, thanks for posting the pictures. The babies look great in their PJ's and we were glad to see that they still fit. With Emma growing like she is, they probably won't fit by Halloween.

Deb has nodded off in her bed and is sleeping soundly now. Thanks for all of the blogs and cards. She is sorry that she is not answering the phone today, but she can barely talk. Hopefully, tomorrow will be a better day for her.

Deb sends her love to all.

Hello from Emma Grace and Christian!

College Football!!!

Dear Fod's,

Debbie is excited today because PSU and ND are playing football. So she broke down and we will pay the $8.00 per day for the TV, except for the fact that it does not have ESPN - so too bad for PSU (ESPN), but hurray for ND (ABC). She also wanted to see Katie Couric make her debut on the nightly news.

Deb is not feeling well today and that is why she is not answering the phone. Her sore throat is worsening and they had to switch some of her PO pills to IV because she cannot swallow them. They are threatening to start TPN (Total Parenteral Nuitrition) tomorrow which is an IV loaded with vitamins and minerals. It is also 50% dextrosed which can be a feeding frenzy for bacteria. Which worries us about the possibility of infection. So Debbie is trying to eat high protein soft foods -- but she is having a difficult time even getting water down. Not a happy camper today!

The doctors feel that this mucousitis will improve as soon as the WBC's arrive. This is day 16 of no ANC. So she thanks you for the phone calls but she is sorry that she is not answering the phone, but it is painful for her to talk right now. The pain pump continues and helps Debbie to stay relaxed, but it is not helping the sore throat. The doctors want her to increase the dosage, but Debbie thinks it is more important to be able to get out of bed and move around so that she does not get pneumonia again.

Thank you for the WBC chants -- keep them up and hopefully it will arrive soon. You are such a talented group of writers, it really helps her to be able to read your comments.

Sorry to be short, but Debbie is getting tired and since it is only one week since the muzzling, I am not taking any liberties.

Deb sends her love all.

WBC Chant Needed

Dear Fod's,

Give me a "W", give me a "B", give me a "C" -- you get the idea here. Or maybe it should be "We Are -- WBC" ?? or something like that. We are still waiting for the little buggars to arrive and to work their magic, but no sign of them yet. Dr. Porter thinks later on in the weekend and we sure hope that he has read his WBC schedule correctly, because I am feeling very tired and I am getting tired of feeling tired.

The sore throat is getting worse by the hour and is now travelling down my esophogus and into my stomach. This is know as mucousitis and I can hardly swallow my pills now. This is not life threatening, but it is extremely painful. The doctors have convinced me to get a PCA pump which means "patient controlled anesthesia," which will hopefully control the pain and enable me to eat more. Otherwise, they will start TPN. This is an alternate food source that is 50% sugar and is just a colony for infection, so I hope not to have to go there. I am trying to eat -- and had a can of bean with bacon soup, delivered by the accused, and some rice pudding for dinner, which I was able to eat and was tastey. The hospital food does not even get into the room anymore. I cannot even stand the smell of it.

My platelet count was only 8 today, so I got a unit. My hgb was 7.6 so blood should be delivered shortly.

With each passing day I am closer to getting my immune system back and once that starts, this throat pain will subside, and I cannot wait for that. That is it for the report on me.

Now onto you guys, Bev and Cathy, I am praying, praying, praying for Jen and Amy. It was good to hear your news. Ricky, you are so funny. I could see you sitting up in the trees shooting down enemy planes, but I have a hard time believing that Mom let you out alone delivering papers in a blizzard at 9:00 PM at night -- more tales of the youngest?? Alright Allison, forget about the cruise and we will all go to Ireland instead. Your descriptions of the Irish scenery was fantastic. Jenny, good luck with Carter in first grade. With Harrison in pre-school, does this now mean you have a few free hours in the morning? Rich -- good to hear from you. When I was up in ICU and everything was out of wack, I kept thinking that, "I wish Rich was here," because no one was concerned about my kidneys or the fact that I could not pee. When they suggested a kidney dialysis cath, I said no -- but that did finally scare the pee right out of me. That is all for now. The lackey performed his services again this evening, because I am on dilaudid and pretty sleepy.

Thanks for all of your blogs and cards, they keep me going in here!

Love and kisses to all.

Debbie