An Interesting Week

Steve is home. I will admit to being worried about bringing him home. He has never come home when he wasn't walking independently. He is gaining strength, but remains weak on his left side and has balance problems. The Rehab therapists trained me to help him. We are doing better than I expected.

We have entered a world filled with safety equipment. Steve uses a walker with someone following to help his balance. We have a wheelchair if we have long distances. Did you know that you have to take off the back, remove the seat and both legs rests before folding a wheelchair to get it into a trunk? We have a wheel chair ramp (built by our good neighbor, Henry Yost - he even went the second mile and painted it to match out home.) We have a variety of support rails and have rolled up the carpet in the family room to prevent falls.

On Friday (congratulations to Jeff & Roxy - sorry we missed your wedding), Steve was scheduled to be released from Rehab and then have "OUT-patient" Chemo. Steve was transported to the Chemo Tower in the hospital to receive Chemo. The nurse started to "check us in" for "IN-patient" Chemo. "In-Patient" procedures have to be preapproved by insurance or the entire cost is due by the patient (that would be us paying lots of $$$$$). So after many calls, Steve did not receive Chemo Friday. But he did come home.

We learned this week:
Steve will receive six Chemo treatments each three weeks apart.
The next MRI will be four weeks after the next Chemo.
Steve will be receiving Physical Therapy, Occupational Therapy, and Speech Therapy at home for four weeks.

:-) Steve got to come home for the day :-)

Rehab gave Steve a "day pass" today. Patients can do whatever they feel like they can handle. Steve's roommate went to a ball game last week. Steve wanted to be in his home. He has been gone a looooooooooong time (hence the lack of beautiful flowers in our front yard). He entered the hospital on April 2.

Family came over for lunch and then we had a quiet afternoon. Mainly we sat and smiled at each other. It was a very good day.

Things have leveled off...not much new

I will be posting less often - I am thinking once a week. Steve's health is at a wait and see point.

The doctors do not have a specific protocol to follow because of the lack of diagnosis. At this point they are planning a second chemo treatment in a few weeks.

The next major hurdle will be the next MRI that is not scheduled at this time. The MRI will tell if the chemo is working.

Currently he will be in Rehab to get him ready to come home.

We request you keep praying for us. Steve has requested that you specifically pray for the numbness on his left side to subside. We continue to pray for a healing miracle, but Steve finds the numbness is particularly irritating.

Rehab is helping

Rehab is helping Steve. He is happier being busy. He is building his strength and learning techniques to help him retrain his brain to compensate for the loss of sensation on his left side. Another benefit is that the stronger he is for the next chemo the more quickly he will rebound from its negative effects.

On the down side, if he does over one hour of therapy he tends to be overly tired. They are breaking up his schedule into smaller units giving him time to recover between sessions.

His schedule has been something like this:
Eat breakfast
Occupational Therapy: half hour
Physical Therapy: one hour
Sleep: 3 hours
Eat lunch
Occupational Therapy: half hour
Physical Therapy: one hour
Sleep: 3 hours
Eat dinner

Steve has been transferred to Rehab

Steve will be in rehab for several weeks. We do not know how long. The therapists meet weekly to evaluate progress.

Steve did OT (occupational therapy) and PT (physical therapy) this morning and is exhausted. He did very well and they predict that he will be able to get back to his pre-steroid strength.

The oncologist has been gone for a week. We do not have the MRI/Chemo plan at this time.

We continue to hope.

Steve is Bored!!!

I am so happy that Steve is bored. This tells me he is getting stronger. He is tired, has a persistant cough, and is achy all over, but he is better than his low point a few weeks ago.

The doctors are elusive in their comments (because of no precise diagnosis), but my best guess from their best guesses is that he will be in the hospital for 2 to 5 more days, then he will go to a rehab center for an indefinite time until he is strong enough to do basic daily tasks.

The next MRI will be 4 weeks from Chemo. This type of Chemo's effect peaks at 2 weeks after administration and by 4 weeks the MRI results should show changes. The decision will then be made whether to repeat the Chemo at that time.

Do NOT eat high fat foods after chemo

Steve has tested the suggestion that he avoid high fat foods after receiving chemo. On Saturday and today he had lunches that sounded good.

KFC + bacon cheeseburgers = :(

He has concluded that the pamphlets are correct. You really should NOT eat high fat foods for a while after having chemo. Bland food does not taste as good, but works much better at this stage.

Overall, Steve must be feeling better. He is starting to have cabin fever. He was too sick to notice until the last few days. This morning we got a wheelchair and took a tour around the hospital and went outside. It felt good to be in the sun for a few minutes.