Steve got his 2nd Chemo a week ago on Friday. He has tolerated the treatment very well.
Our favorite Dr. told us that Steve's symptoms will improve as the lesions shrink, but that the progress would be slow. So far, Steve has been experiencing less intense headaches AND his left hand is not as numb in the morning when he wakes up. The numbness returns within an hour, but we feel hopeful that something good is happening.
My brother Ken has come to visit for a week. He has come at a great time.
Our children have gone the extra mile. Bret had taken most of the responsibility of staying with Steve daily while I went to work this last week. Sarah and Valerie have been busy with end-of-the-school-year schedules last week and this coming week. After this week, Sarah, Valerie and Bret will work together to be with Steve, but this week was a busy time for everyone - that is when brother Ken came to the rescue.
We appreciate all your prayers on our behalf - we have angels (heavenly and earthly) all around us.
Saturday, May 23, 2009
Thursday, May 14, 2009
I thought I took a week off to help Steve get settled into a schedule but....
I thought I took this week off to help get Steve settled into a schedule, but ended up spending most of my energy trying to get him scheduled for Chemo.
Monday:
Called Dr. H's (Oncologist) office to schedule Steve's Chemo - had to leave message - voice mail says they will call back in 24 to 48 hours - chill runs down my spine - at this rate we won't be able to schedule Chemo for a long while.
10:00 nurse came, changed dressing on Steve's pick line, took blood, trained me to flush the pick line.
I decide to floss my teeth and break a tooth.
Went to my good friend and excellent dentist to check it out - I need a crown.
V calls from Dr H's office calls and says they have to get orders from Dr. H then get insurance approval before they can schedule
Tuesday:
V from Dr. H's office calls. They have the orders, but have to get insurance approval before they can schedule. I call City of Mesa Benefits Office. Approval can be given usually within a few hours. Called Dr H's office and left message.
9:30 Occupational Therapist an hour late and calls to say we are not at home. Oops - she is at the wrong house.
Also at 9:30 Speech Therapist arrives. OT and Speech evaluate Steve.
2:00 Physical Therapy
Finally a call from V. They cannot schedule until their financial people get approval.
And by the way, we are Dr. R's patient not Dr. H's patient. I explain we saw Dr. R when hospitalized last September, but Dr. H treated us at the hospital in April and developed the treatment plan. So sorry - but the "computer" says we are Dr. R's patient. We tell V both Dr.'s are good - can we schedule the Chemo? V cannot schedule us - she works for Dr. H.
Dr. R's staff will need to call us to schedule.
Wednesday:
Go to our family doctor. Steve comes close to falling twice. Once on the way into the building and once while walking back to see the doctor. We get 9 perscriptions.
Call and leave message again about scheduling Chemo with Dr. R's staff. Recieve call from Bonita (with Dr. R) asking if Charlotte has called to schedule Chemo. I tell her no. Bonita says Charlotte will be calling.
Steve falls, but luckily slides between some furnitue and does not hurt himself. It is the old balance issue.
Thursday:
Finished crown prep at dentist.
9:00 Occupational Therapy
9:30 nurse changes pick line dressing
10:00 Pysical Therapy
Early afternoon: No call from either oncologist. Sooooo....We drove to their office in Scottsdale. Amazingly, within 30 minutes, they found the orders, verified insurance, and now have Steve scheduled for Chemo tomorrow (Friday). The staff is confused because the "Orders" are written by Dr. H, but the "computer" says we belong to Dr. R.
At least we are scheduled.
Monday:
Called Dr. H's (Oncologist) office to schedule Steve's Chemo - had to leave message - voice mail says they will call back in 24 to 48 hours - chill runs down my spine - at this rate we won't be able to schedule Chemo for a long while.
10:00 nurse came, changed dressing on Steve's pick line, took blood, trained me to flush the pick line.
I decide to floss my teeth and break a tooth.
Went to my good friend and excellent dentist to check it out - I need a crown.
V calls from Dr H's office calls and says they have to get orders from Dr. H then get insurance approval before they can schedule
Tuesday:
V from Dr. H's office calls. They have the orders, but have to get insurance approval before they can schedule. I call City of Mesa Benefits Office. Approval can be given usually within a few hours. Called Dr H's office and left message.
9:30 Occupational Therapist an hour late and calls to say we are not at home. Oops - she is at the wrong house.
Also at 9:30 Speech Therapist arrives. OT and Speech evaluate Steve.
2:00 Physical Therapy
Finally a call from V. They cannot schedule until their financial people get approval.
And by the way, we are Dr. R's patient not Dr. H's patient. I explain we saw Dr. R when hospitalized last September, but Dr. H treated us at the hospital in April and developed the treatment plan. So sorry - but the "computer" says we are Dr. R's patient. We tell V both Dr.'s are good - can we schedule the Chemo? V cannot schedule us - she works for Dr. H.
Dr. R's staff will need to call us to schedule.
Wednesday:
Go to our family doctor. Steve comes close to falling twice. Once on the way into the building and once while walking back to see the doctor. We get 9 perscriptions.
Call and leave message again about scheduling Chemo with Dr. R's staff. Recieve call from Bonita (with Dr. R) asking if Charlotte has called to schedule Chemo. I tell her no. Bonita says Charlotte will be calling.
Steve falls, but luckily slides between some furnitue and does not hurt himself. It is the old balance issue.
Thursday:
Finished crown prep at dentist.
9:00 Occupational Therapy
9:30 nurse changes pick line dressing
10:00 Pysical Therapy
Early afternoon: No call from either oncologist. Sooooo....We drove to their office in Scottsdale. Amazingly, within 30 minutes, they found the orders, verified insurance, and now have Steve scheduled for Chemo tomorrow (Friday). The staff is confused because the "Orders" are written by Dr. H, but the "computer" says we belong to Dr. R.
At least we are scheduled.
Saturday, May 9, 2009
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 $$$$$). So after many calls, Steve did not receive Chemo Friday. But he did come home.
We learned this week:
Steve will receive six Chemo treatments each three weeks apart.
The next MRI will be four weeks after the next Chemo.
Steve will be receiving Physical Therapy, Occupational Therapy, and Speech Therapy at home for four weeks.
We have entered a world filled with safety equipment. Steve uses a walker with someone following to help his balance. We have a wheelchair if we have long distances. Did you know that you have to take off the back, remove the seat and both legs rests before folding a wheelchair to get it into a trunk? We have a wheel chair ramp (built by our good neighbor, Henry Yost - he even went the second mile and painted it to match out home.) We have a variety of support rails and have rolled up the carpet in the family room to prevent falls.
On Friday (congratulations to Jeff & Roxy - sorry we missed your wedding), Steve was scheduled to be released from Rehab and then have "OUT-patient" Chemo. Steve was transported to the Chemo Tower in the hospital to receive Chemo. The nurse started to "check us in" for "IN-patient" Chemo. "In-Patient" procedures have to be preapproved by insurance or the entire cost is due by the patient (that would be us paying lots of $$$$$). 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.
Saturday, May 2, 2009
:-) 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.
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.
Sunday, April 26, 2009
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.
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.
Friday, April 24, 2009
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
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
Wednesday, April 22, 2009
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 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.
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