I have been in the hospital too long!

Hello Everyone,

The past 15 days have been very difficult and tiresome. But, I feel all the infections are gone and I am really just waiting on my own immune system to increase.

I get mild fevers under 101 but we would like to see that regulate out to normal.

I have started to complain to the doctors that I want to get out but they are wise and tell me that they need a few more days to see why the numbers are not improving.

I have asked today about not doing cycle 2 of the Chemo and going straight to transplant. They are going to consider this because I had a Great response cycle 1. If I just wouldn't have gotten sick after chemo 1.

So, I would ask that everyone continue to pray for my blood counts to improve. I also ask that everyone pray that I go into transplant as soon as possible.

Thanks for checking in,

Gary

More Progress!

The doctor reported today that Gary's lungs have made remarkable progress- maybe even the most progress that he has seen in one day. He was able to sleep alot yesterday afternoon and in the evening. His platelet count was low in the evening so he received another platelet transfusion late last night.
WBC (white blood cells) went down to .3 this morning and ANC (infection fighters) disappeared again.
We moved to another room. After you are here for a while you learn the system. This room is much larger and easier to get around- same floor just down the hall.
I went home yesterday to a sparkling clean house and dinner on the counter. I haven't mentioned it in the blog lately but we really appreciate all of the help that we are receiving. So many people are stepping up daily to help us out, we couldn't do it without you!! I don't always know what to ask for but I like what is showing up!
Here's to another day of rest and increased blood counts!

Going Up!

The ANC was measurable this morning .1! WBC went up to .6. These are moves in the right direction. Gary feels better today and as the doctor said I am happy with the numbers but really pleased that you feel better.
Gary's lil sis from Denver came in this week and she spent the night with him at hospital. He slept much better. He has been sleeping as much as he can today. His body is working hard to heal itself.
We figured out the bed today. Gary is not a tall man and has a 29" inseam. His feet were hitting against the end of the bed. We kept asking how taller people can use this bed and they would try to get him to sit up higher in the bed. This morning the aid showed us the hidden button with key that moves in and out the end of the bed. Lesson learned: keep asking the questions, you will eventually get the answer that you are looking for.
No more significant findings in tests. Still wondering why fever is not going away. We have no idea when he will be released from hospital.

New Digs!

We moved rooms last night ready for a new setting well actually a new level of care. Due to unexpected arrival through ER, Gary was placed on a general internal medicine floor. Due to the fact that he is a cancer patient, he needs to be on the hemotology/oncology floor. The right doctors are important but knowledgable support staff is important also. We are on the Bone Marrow Transplant Unit (BMT) where low blood counts and blood transfusions are routine.
He has had some relief from the fevers. It does not go as high and has dropped in normal range at times.
His WBC is .4 today and ANC still not measurable.
Doctors feel that the current medication is working. Gary hates the antifungal med voriconizol due to side effects of vision issues. But it is the best fungus fighter the docs can find.
No further tests scheduled for today. He had a spinal this morning and we should get some results this afternoon.
Gary asks "can you just leave me alone and let my body rest and catch up?"
Jeremiah 33:6 I will heal my people and let them enjoy abundant peace and security.

It's Monday!

It was another rough night for Gary- it is impossible to get continuous sleep in the hospital the place that you need it most. I am on patrol today trying to minimize distruptions so he can sleep.
CTScan of his lungs this morning showed more irritation in the lungs- his meds have been changed to cover any type of lung bacteria/fungus.
He is still drinking and eating some throughout the day knowing it is important to keep nourished.
They have not been able to do lumbar puncture/spinal tap due to low platelets. Although he did receive a transfusion last night his platelets lowered to 34 and need to be 50.
WBC is .5 again and ANC not measurable. Enough time was elapased since neulasta shot so he will start neupogen shots today.

Another Day!

Another exciting day at Uof M for Gary. His fever reached an all time high of 105.1 this afternoon. We are still waiting for white count to recover it is .5-same as yesterday. His mind is quite out of it- I will have to write down some of the things he is talking about it might be funny someday.
He was having problems with peripheral vision in right eye. A few optholomogists checked it out and seem to think that the infection spent some quality time in his eye and left some blood residue. They will continue to monitor it and it should heal with meds that he is already taking. Although it could take awhile for his vision to be back to normal. Just another issue not as concerning as lymphoma.
He had a MRI of head this morning and it seemed to be clear. A spinal tap to look for more infections will be done as soon as platelets can be raised to 50.
We are beginning to think he would be better off without any meds and heal on his own. But unfortunately that would take white blood cells and neutrophils which he isn't making. This stuff needs to go away as quickly as it arrived!!

Making Progress

Hello Everyone,

I did not expect any of this.

Tammy has done a great job letting you know day to day stuff and sometimes hour by hour.

But, today I am going to tell you how my night was (Don't Worry It Will Stay Clean)

Tammy went home last night and I began to turn down:

Turn Down Procedure
Step 1: Doctor fixes a small leak at port removal site
Step 2: Get the three antibiotic drips and many drugs.
Step 3: Fever Returns 102.4 (Moving in the right direction)
Step 4: Receive Pain Medicine
Step 5: Labs at Midnight

After all this I did not sleep very well.

This morning has been less challenging.

Did the usual stuff (shower , breakfast) but is the unusual that is nerve racking:

- Meet with Hemo Dr at 6:00
- Meet with Infectious Di eases at 7:00

Here is today's plan.

1) Continue antibiotics and adjusting one
2) Stopping Anti-Fungal because it worked
3) Start New Anti Fungal to cover other stuff

And

1 Bag of Platelets
2 Units of Whole blood

Summary

I am worn out but continue to march forward with Tammy and God by our side to combat this.

Did you see the blog passed 10,000 hits, this means so much to Tammy and I that so many of you care and are sending us your prayers.

Thanks for checking in,

Gary

Short Lasting IV

Although Gary didn't like the idea of the mediport. He is already missing it. It is an easy way to give blood, get medication, blood products etc. It is accessed once and then "good to go" until discharge. They are now using an IV for infusion of medication. It is supposed to last about 4 days. Gary's blew out this afternoon in less than 24 hours. How did we know? Blood started coming out, I wont say gushing but enough. Hopefully this new one will last a few days.
We took a walk down the hallway- didn't like having him out in the sea of germs but he needed a little fieldtrip. Another disadvantage of IV is that it beeps alot with little movement.

Up and Down

The fever was down in the 100 range for most of the night. It started to creep up this morning and its now back to 103.1. We were happy to get temporary relief.
White blood cells dropped this morning to .5 and ANC .1. These are the disease fighters so they need to increase not decrease. Keep talking to God about that.
The doctors have identified one of the bugs in Gary and changed meds to kill it. They are going to be more strict with visitors in and out of the room- it is not a good bug to pass around. His outside vistors (that is you!) are also restricted until his white blood counts improve.

Port Coming Out!

We were trying to avoid taking out the port but now it is time. They have found another bacteria from blood taken from the port site which doesn't necessarily mean it is in the port itself but it is time to get it out. This is be a pretty simple procedure but he will first need to get pumped up with platelets. The purpose of the port was to get chemo treatments but a pic line can be used instead. We are not sure if they will be able to schedule the procedure today or wait until Friday.
The temperature is still pretty high. It does lower at times which he appreciates. They have switched some of his antibiotics.
He started anti fungal voriconazol and has had halucinations all night. It was kinda fun at first but getting old now. We are told it is not a long term thing just temporary.
His appetite still in not too great. He tried a supplement shake last night and did ok. Everything has a metal taste. Just a few weeks ago, I was trying to get him to stop eating junk and lose weight and now doing anything to encourage him.
Gotta go! Although Gary is not up to writing in the blog he is reading the comments. I was going to read them to him last night and he already had read them on his Iphone. We love all of the support- keep the prayers coming!