Hospital Discharge date +1

First off,  {{Glad To Be Home}} !!

First nights dinner a prime example of how screwed up my mouth is. Cathy, at my request, made her sheperds pie. Normally a favorite of mine but taste was just off. Got to admit the potato was not too bad but everything was just wrong.

It was really nice to sleep in my own bed for a change and not get nudged awake every few hours for vitals checks. Felt a little weird but trust me, I adjusted.

The worst affront from my taste bud issues was my coffee. Nooooooo!!  It tasked like dark roasted formaldehyde. Come on!!

A nursing service came  by this morning to show Cathy how to saline and heparin flush my lines. While she was here, asked her to remove the bandages from the line site that was removed a couple days ago.

Got to admit that hurt quite a bit but it's over.

Napped quite a bit today.

Hospital exit date confirmed

Hi everyone,

I am pleased to confirm that I definitely will be leaving the hospital Saturday mid-day.

My levels are continuing to rise impressively which prompted the doctors to make that decision.

The next things were tasks on my part such as getting off the PSA machine that fed me morphine as well as the TPN nutritional line while I was unable to eat.

These have been done so .. Weeeaaaaaar Outa heeeeere

ups and downs. - plus some mind blowing news!!

Today was a mixed bag of ups and downs



With last night's first nupragen shot, the counts have begun to climb. The significant one to rise was my white count. just two nights ago, I was at 0.027. Today it was at 1.37! That is higher than the level I walked in here with.

Having a higher white counts is very nice because I can begin to heal all the soars and gashes in my mouth!!

My energy levels are still in the toilet but it I expect those levels to rise soon.

Dr. Antin, primary doctor for Dana Farber MDS, just came in and stated that I should be able to come home in the next couple days if things progress as they have been!!

I personally think that is ambitious but I wont argue.

Lots of news today

Lots of news today.

Go the results of yesterday's MRI scan of my skull. When viewed from a specific angle, you can see a small abnormality.

Doctors were not exactly expecting to find anything so it was kind of a surprise and judged it as insignificant for the time eoing.

I got a PCA drive delivery device on my IV tree now.

all I have to do is push the button and 1 mg of morphine will go straight to my blood stream.

I cant over do it because it is computer controlled and limited to a no more than 1 dose every 7 minutes.

That is still considerable more than what I had been permitted til now.

Fast replicating cells now being impacted - part 3

To counteract the mouth sore pain, I have been given two new mouth washes. 

One is just a saline and lidocane mix while the other is lidocane and benadryl. 

These help to numb things up enough that I function reasonably well.

The doctors have now ordered me on what they call TPN.

This means they are now supplying critical nutrition via one of my lines by bypassing the entire digestive track.

I will continue to try eating but this ensures I have everything I need while the sores attempt to heal.

TPN should only last for a few days which is welcome because I must be attached to an IV 24hrs a days while it is active. 

Fast replicating cells now being impacted - part 2

The impact on my fast replicating cells is getting more severe as my white blood cell and platelet counts continue to drop.

This means that I am beginning to develop some serious sores in my mouth. Both my cheeks have gashes about an inch long, blood blisters are forming on the inside of my lips, and the tongue feels like it has been raked by a cheese grater.

In an adult, a normal count is about 150,000 to 450,000 platelets per micro-liter of blood. I am at 9,000. 

I got a transfusion of platelets this afternoon so ideally this will bring me up enough that I don't bleed from places like the ears, noes, and eyes.

My total red blood cell count has maintained since yesterday so this is a good sign but it is still possible for it to fluctuate a bit. Today it was at 25 but if it drops below 24, I will need another transfusion.

Still exhausted beyond all belief but it is what it is. Naps are almost becoming the norm because of all the vitals checks, IV changes, blood draws, blood cultures, etc. 

Antibiotics have helped quite a bit on several levels but I am officially run down and am counting the days when I can finally leave. 

being sent off to have a CT scan of abdomen this morning

They want to confirm whether my gut pain is due to over active bacteria growth in the intestines. They will be putting me on another IV for antibiotics in addition to the two I already get. Unfortunately, because I have virtually no immune system, the antibiotics are limited in what they can do. The best they can really do is ensure it doesn't get much worse. 

Fast replicating cells now being impacted

The effects of the chemo are now starting to show up.


My gut is now starting to roil and turn like someone put an egg beater in my intestines.


Additionally, I am starting to get sores on the inside of my mouth and a sore throat.


The hospital has me on all kinds of rinses, glutemin drinks, and other mouth care to keep things under control or lessen its effects. 


The throat, mouth, and intestine are composed of fast replicating cells and those always suffer from chemo so all this is expected.. Just hurts for now.


Once my platelet counts go up, the effects should go away but that wont be for about a week or two.

Levels in detail

I knew levels were continuing to decline but I'm now able to watch it clearly. 


The nurses provided me a per day matrix showing the values. 


Platelet levels are declining fast. 


In another day or two, I will need to get transfusions for them as well as red blood cells

Transfusion and sonogram of legs - happy happy joy joy

The Hematocrit levels are still low so I am scheduled for another transfusion later this morning.


Additionally, my legs are getting swollen so I was wheeled off for a sonogram of the legs this morning.


The doctors are concerned about the possibility of a blood clot.


Odds of it are low but better safe than sorry.

Transfusion scheduled for today

My hematocrit levels are now low enough that I will require a blood transfusion.


Hematocrit levels measure the amount of red blood cells per volume in total blood.  


Normally the level should be about 45% for men and mine have sunk down below 20%.

Starting a second chemo regiment

Velcade is being started tonight along with Methotrexate.


Although Velcade is a chemo drug, it is really being used along with two others for control of graft versus host disease.


The chance of getting some kind of GVHD reaction is pretty high with an unrelated stem cell donor.


I am already on Tacrolimus for GVHD control so these trials should stack to help reduce the effects.

stem cell transplant complete

The stem cell transplant was completed at about 10:30PM last night.

I was hooked up for EKG and the drip was started at around 9PM.

Things started okay but the nurse had to slow the drip down because I was getting serious pressure on my chest.

Just got word on the stem cells.

Dana Farber didnt receive the cells until 5PM and is processing them now.


I expect to go on IV at 7PM with stem cell transplant at 9pm.

News on stem cell arrival

The cells will be arriving at Dana Farber for 2pm.

They will be processed which takes about 3 hours.

If all goes according to plan, I should be receiving them around 5pm this evening.

tomorrow is the big day

I am scheduled to get my stem cells tomorrow!

One step closer to getting better.

Makes the misery of chemo worth it!

off the iv pole for now

Still suffering from extreme nausea .  

The anti-rejection drugs are not too bad  but i am really getting tired of all the meds.

Handfuls left and right of pills. I will never complain about taking a vitamin again.

Attempts to eat have been hit or miss. 

Have lost 10lbs so far.

Fourth day of chemo concludes

The fourth day of chemo is ending and all I can say is, thank god.

Nausea and weakness are incredible but at least I haven't vomited yet.

Now we get to watch the already descending blood count levels continue to drop. 

Every day, I have blood drawn to check the levels. 

The levels continue to gradually decline. They will then plateau and then drop like a stone.

My weakness will be even more pronounced when that occurs but that means I will be ready to receive the transplanted stem cells.

One step closer to getting done with this.

third day of chemo - fun beginning

I am now beginning to feel the adverse affects of the chemo.

No vomiting yet but the stomach is roiling around and my desire to eat has gone down the toilet, so to speak.

Trying not to think about it too much so I don't psych myself into it.

I can easily see it beginning without too much effort.

The nurse came in and could see I was miserable and green around the gills.

They put me on ativan to help control the nausea.. It helps but it is making me sleepy. no big surprise there since ativan is also a sleep aid.

Second day of chemo - lead yanked out - restitched

For the most part, today was like yesterday.

I was on the anti-nausea iv and saline drips for about an hour before starting the first chemo.

While on the chemo treatment, things got a little interesting.

I was on my bed and tried to move to the side a bit to get comfortable.

When I put my hands down to support moving, I ended up trapping the left chest lead.

This popped some of the stitches, shredded some of the skin and backed out the lead.

The doctors were able to fix things and re-insert the lead but damn that hurt. A lot.

We were then able to proceed with the next chemo treatment.

Note to self. Always be aware of which way the leads are flowing.

Other than this, things are going relatively well.

Just exhausted all the time.

First day of chemo down!!

Well.. I had my first two bouts of chemo today and things are largely pretty good.

No nausia or other side effects so far.

Per protocol, I will now be on an IV all night to ensure I'm hydrated and flushed of toxins for the next round of chemo tomorrow.

Pills have been coming at me left and right. Clear ones, white ones, big blues, small oranges... wow.

They each serve a purpose but dont ask me at this point.

What pain i had from the catheter operations are largely gone now which is nice.

My biggest enemey right now is exhaustion.

A sleeping pill and oxycodone should help to ensure a good nights rest.

First night done in the hospital - chemo starts today

My first night in the hospital was a bit rough.

Between the pain from the catheters inserted in the chest, regular joint pain, and being woken every couple hours for stats, sleeping last night was more an idea than a reality.

A sleeping pill will be on the menu for tonight.

Much of the tape holding in the catheter leads has now been removed which has helped cut down on the discomfort a lot.

My chemo starts today at around 11AM.

Woo hoo

out of surgery

Finally out of surgery and in my room.

Protocols have started where everything is wiped down and everyone wears gloves/masks.

The room is Brigham and Womens Pod 6B and the direct number is 617-732-4159.

Got the call on when to go in

I will be going to Brigham and Women s for 7:00AM-7:30AM to start the admittance process.

From there, I will be getting a platelet transfusion before getting the two leads put in my chest.

Although I cant eat anything after midnight, at least they are not taking my coffee away till 6:30AM.

Cant go on without that!!  :)

Days are counting down

Tomorrow we will be hearing from Dana Farber on when we should get there for Wednesday.

I suspect it will be early in the morning.

Got to admit, a bit nervous but glad to get this started.