Things are moving into place, so we can go home tomorrow afternoon. Ron is not receiving any IV meds as of this afternoon. We will need to return next week, so he can have bloodwork and a clinic appointment, and we are still hopeful that we can travel to Virginia for Thanksgiving.
At this time including the appointments scheduled for December, Ron will have had 90 days of medical appointments and care of various types at U of M Hospitals in 2013. As Ron would say, "that's a big Jimmy T. OH, MY!"
Tomorrow morning I will go to the Cancer Center Pharmacy to pick up new meds and refills, and Dr. Mag is taking over in-patient service, so that will be good to have him as Ron's discharge doc. We hope to be home by late afternoon, and Gary (my brother)and Vicki will be there to help us unload the car and settle in at home. Rick (Ron's brother) and Tammy have made arrangements for GG's memorial service which won't be held until January 18, 2014. Her obituary will be in the Coldwater and Jackson, MI (Citizen Patriot) newspapers soon.
Love,
Ron & Jan
Wednesday, November 13, 2013
Tuesday, November 12, 2013
11-12-13
Ron continues to improve, and tomorrow they will start changing his IV medications to pill form. Dr. Couriel didn't want us to have to do IV antibiotics at home, so Ron will likely be discharged on Friday. That way they can observe him a couple more days, and the home plan for a visiting nurse and at home physical therapy can be in place. The cardiologist has discharged him from their service, and the heart monitor is gone. He has a very slight heart rhythm irregularity that barely falls out of the normal range, but it was aggravated by the respiratory distress. No intervention is needed.
Ron's mother passed away today. She has been living in an adult foster home for four months following 3 falls, hospitalization, and rehab center for a month. It was not unexpected but still hard to hear. Ron and I had visited her last Wednesday morning from AA before Ron's doctor appointment that day. I am so glad that we made the trip.
Ron's mother passed away today. She has been living in an adult foster home for four months following 3 falls, hospitalization, and rehab center for a month. It was not unexpected but still hard to hear. Ron and I had visited her last Wednesday morning from AA before Ron's doctor appointment that day. I am so glad that we made the trip.
Monday, November 11, 2013
Testing Testing
This was a busy day. Ron does not require breathing treatments during the night, so fewer sleep interruptions was (were?)appreciated. Ron started the day by a trip to the Cardiovascular Center for an echo ultrasound test of his heart. The bloodwork that might indicate a heart related event was negative. He is still on the heart monitor, but there is not a significant change from normal results. The first EKGs showed irregularities that were aggravated by respiratory distress.
Now he is just on an inhaler as needed. Twice a day seems to be what is needed. He is not on oxygen any more. His BP is normal again, so overall, he has responded very well and quickly to treatment.
His lungs are fighting infection. His staph infection in his lungs is MRSA --same as in January, and this time in addition to that, he has pseudomonas and an aspergillus fungal infection.
The PT came today to access his physical therapy needs. He will need to work on strength again especially in hips and thighs and also work on balance. He will resume ECP when his infection is under control, so we proceed and have a feel for the direction we are headed. Controlling a chronic illness is now a shift in thought for me although that has been the case for quite some time.
Tracy, his PA from the first rounds of chemotherapy in 2010, first remission, and chemo during relapse which led up to the bone marrow transplant, visited today. So much has happened in the past 2 1/2 years, so many changes in Ron. It was a tearful visit for me.
Bloodtests are being done to check the absorption levels of the antibiotics and anti fungal to see if the dosage is correct for him. This can vary person to person. The treatment plan needs to be in place before we can go home, and the aim is still Wednesday. The testing is wrapping up...I think.
Love and thanks for the prayers, good wishes, and positive thoughts that I feel coming our way.
Jan
Now he is just on an inhaler as needed. Twice a day seems to be what is needed. He is not on oxygen any more. His BP is normal again, so overall, he has responded very well and quickly to treatment.
His lungs are fighting infection. His staph infection in his lungs is MRSA --same as in January, and this time in addition to that, he has pseudomonas and an aspergillus fungal infection.
The PT came today to access his physical therapy needs. He will need to work on strength again especially in hips and thighs and also work on balance. He will resume ECP when his infection is under control, so we proceed and have a feel for the direction we are headed. Controlling a chronic illness is now a shift in thought for me although that has been the case for quite some time.
Tracy, his PA from the first rounds of chemotherapy in 2010, first remission, and chemo during relapse which led up to the bone marrow transplant, visited today. So much has happened in the past 2 1/2 years, so many changes in Ron. It was a tearful visit for me.
Bloodtests are being done to check the absorption levels of the antibiotics and anti fungal to see if the dosage is correct for him. This can vary person to person. The treatment plan needs to be in place before we can go home, and the aim is still Wednesday. The testing is wrapping up...I think.
Love and thanks for the prayers, good wishes, and positive thoughts that I feel coming our way.
Jan
Sunday, November 10, 2013
Sunday - 4th day in hospital
We have more information today. Lab tests have identified two bacteria in Ron's lungs-- staph aureus which could be MRSA again and pseudomonas. He was already on IV antibiotics that will cover them, but they did up the dose. Today a doc from cardiology came to examine Ron and discuss some abnormality in his EKGs. He has now had 4 EKGs done, and the change is not severe but needs to be investigated more. He is on a heart monitor to gather more information and might have an echo test tomorrow. Dr. Couriel has been in to see Ron Saturday and Sunday, and he will be on service for in-patients this week too.
We walked in the hallway today, and he does feel better. We have enjoyed some football and our naps too. --still catching up from our all-nighter on Thursday. I sleep in Ron's room..not too bad actually. We think this is the 14th hospitalization since his diagnosis of AML in April 2010. All of his rounds of chemotherapy required hospital stays; then there was the transplant itself and many complications. Over 200 nights in the hospital now.
We had a nice visit from Cale today. He can give his sibs his perspective of things here in Ann Arbor. :-)
Love,
Ron & Jan
We walked in the hallway today, and he does feel better. We have enjoyed some football and our naps too. --still catching up from our all-nighter on Thursday. I sleep in Ron's room..not too bad actually. We think this is the 14th hospitalization since his diagnosis of AML in April 2010. All of his rounds of chemotherapy required hospital stays; then there was the transplant itself and many complications. Over 200 nights in the hospital now.
We had a nice visit from Cale today. He can give his sibs his perspective of things here in Ann Arbor. :-)
Love,
Ron & Jan
Saturday, November 9, 2013
Making Progress
Ron is much better than his first night in the hospital. He has always responded well to treatment. He is on a wide range of antibiotics until the bacteria in his lungs is identified. It could take 2 weeks to identify the fungus. They are also checking for viral issues. His need for supplemental oxygen is almost resolved already.
Besides the lung infection, it is believed that he had a bad reaction to dapsone that was started 6 weeks ago during his gvhd flare-up. It altered the iron in his red blood cells so they could not carry enough oxygen. As a result, in the past month his heart rate has been over 100 and he has had high blood pressure which was a new issue. Also, at appointments, the oxygen level was registering low until he would take several deep breaths. Following treatment with methylene blue (he is peeing Michigan blue now), this condition -methemoglobinemia- is reversing and so are the symptoms. I add this medical gibberish for the ones of you who have medical background! To check that oxygen level in his blood they use a gizmo that attaches to the end of a finger, and they also have done arterial blood gases draws which are not a walk in the park. The oxygen carrying red blood cells have reverted back to normal iron and his other vitals are back to a more normal range.
During the first night when they nearly admitted him to ICU, his BP was 184/100, his respirations 40 per minute, his heart rate 115, and he was on 80% oxygen. When they ask about intubation and CPR wishes, it gets scary. It truly was amazing how quickly his condition improved as the treatments started. The bronch has provided good information but the procedure itself exacerbated the issues.
Ron is in an isolation room on the ward where BMT patients are admitted to Mott Hospital (U of M). His BMT Clinic is just down the hall. Because of precautions I cannot go in the common areas in the inpatient area. That includes the laundry and lounge facilities, so Ron's tech is doing our laundry today for us. Bonus. We had packed to go home on Thursday, so we needed some things laundered. However, I knew someday that it would pay off to always pack an excessive amount of underwear for both of us.
Too many details; I know, but this blog is also a record of events for me. :-)
Besides the lung infection, it is believed that he had a bad reaction to dapsone that was started 6 weeks ago during his gvhd flare-up. It altered the iron in his red blood cells so they could not carry enough oxygen. As a result, in the past month his heart rate has been over 100 and he has had high blood pressure which was a new issue. Also, at appointments, the oxygen level was registering low until he would take several deep breaths. Following treatment with methylene blue (he is peeing Michigan blue now), this condition -methemoglobinemia- is reversing and so are the symptoms. I add this medical gibberish for the ones of you who have medical background! To check that oxygen level in his blood they use a gizmo that attaches to the end of a finger, and they also have done arterial blood gases draws which are not a walk in the park. The oxygen carrying red blood cells have reverted back to normal iron and his other vitals are back to a more normal range.
During the first night when they nearly admitted him to ICU, his BP was 184/100, his respirations 40 per minute, his heart rate 115, and he was on 80% oxygen. When they ask about intubation and CPR wishes, it gets scary. It truly was amazing how quickly his condition improved as the treatments started. The bronch has provided good information but the procedure itself exacerbated the issues.
Ron is in an isolation room on the ward where BMT patients are admitted to Mott Hospital (U of M). His BMT Clinic is just down the hall. Because of precautions I cannot go in the common areas in the inpatient area. That includes the laundry and lounge facilities, so Ron's tech is doing our laundry today for us. Bonus. We had packed to go home on Thursday, so we needed some things laundered. However, I knew someday that it would pay off to always pack an excessive amount of underwear for both of us.
Too many details; I know, but this blog is also a record of events for me. :-)
Friday, November 8, 2013
Pneumonia
Ron has been hospitalized for pneumonia. He saw a pulmonary doctor on Monday because the CT scan showed probable fungal infection. She ordered a bronch scope on Thursday. He has also had another head MRI and light therapy. During the prep for the bronch, I was told that he probably would not be able to go home because he was requiring oxygen. His need for more oxygen as the evening progressed and a fever were symptoms of his pneumonia, but they also think he had a medication interaction that caused his blood to carry less oxygen. So he was breathing rapidly and required quite a bit of oxygen during the night. He is much better this morning and afternoon, and his oxygen requirement is about half of what it was. He will be hospitalized into next week. He has bacterial growth in his lungs as well as fungal, so his medications are being adjusted to cover those needs. His MRI showed no progression in his brain lesions. Yeah!
Being in the hospital is exhausting!! It didn't help that we were awake and stressed during most of the night.
Getting great care,
Ron & Jan
Being in the hospital is exhausting!! It didn't help that we were awake and stressed during most of the night.
Getting great care,
Ron & Jan
Friday, November 1, 2013
Really?? November?
October seemed to pass quickly, and this morning after 3.5 inches of rain and stout winds over 2 days, it was amazing how much it looked and felt like November. It was a dramatic shift.
Ron and I made a day trip to U of M clinic in Canton for CT scans of his sinuses and lungs. The results show probable fungal infection in his lungs, so the IV pole went back in the closet, and he was changed to an anti fungal that will give better coverage. After a few days of that and several episodes of hallucinations, the IV pole has returned, and I will resume the infusion of the anti fungal that has less side effects. He realized the episodes were hallucinations and did not find them fearful. (Music and TV playing when his eyes were closed that would stop when he opened his eyes and people in our bedroom who would disappear when he opened his eyes but felt very real) he had one nightmare about a tsunami.
We will spend some time in AA this week for an evaluation of his lungs and resuming ECP every other week.
Ron and I made a day trip to U of M clinic in Canton for CT scans of his sinuses and lungs. The results show probable fungal infection in his lungs, so the IV pole went back in the closet, and he was changed to an anti fungal that will give better coverage. After a few days of that and several episodes of hallucinations, the IV pole has returned, and I will resume the infusion of the anti fungal that has less side effects. He realized the episodes were hallucinations and did not find them fearful. (Music and TV playing when his eyes were closed that would stop when he opened his eyes and people in our bedroom who would disappear when he opened his eyes but felt very real) he had one nightmare about a tsunami.
We will spend some time in AA this week for an evaluation of his lungs and resuming ECP every other week.
Thursday, October 24, 2013
A Bit Weary...
We have had a stretch of busy days, and I am ready to relax and catch up on some things the next 3 days. I am a home-body anyway, so this will be enjoyable for me. We traveled to Ann Arbor Monday and Tuesday of this week. Ron had appointments with his transplant doc and also the doc who is the BMT head doc. After Ron had a flare up of his graft versus host disease a month ago, Dr. Mag wanted him to see Dr.Couriel. He felt Ron needs to be checked for lung issues and also another MRI to see if there are any changes in his brain lesions. We will travel to U of M Canton, MI for chest and sinus CT scans on Monday. That will be a day trip. Dr. Couriel believes that he had a flare as a result of starting ECP light treatments only once a month in September, so Ron will resume biweekly trips to Ann Arbor this month.
Another change will be with his preventative anti-fungal medication. He is having this medication in IV infusion, so we have the IV pole out of the closet again. He had his first IV at the clinic on Tuesday, and a visiting nurse came yesterday to watch me give the first at home infusion. This is a daily infusion that takes about an hour. The liquid antifungal aggravates his cognition and coordination issues. He will also receive physical therapy at home for awhile and then perhaps transition to PT back at the facility that we used last winter.
Yes, winter looms, so we have had our flu shots and are hoping for no hospitalizations this winter. Next week we will spend 3 days in Ann Arbor for ECP treatments and the MRI of his head. I am assuming that he will then be able to take less steroids. It is such a balancing act, and less ECP tipped the scale which caused the GVHD flare up. Probably.
It is a relief that gardening is coming to year's end. I have indoor projects planned, and we have already had a killing frost and snow flurries, and I even put on my long underwear today! Ha!
Love to all friends and family as our journey is now a saga!
Ron and Jan
Another change will be with his preventative anti-fungal medication. He is having this medication in IV infusion, so we have the IV pole out of the closet again. He had his first IV at the clinic on Tuesday, and a visiting nurse came yesterday to watch me give the first at home infusion. This is a daily infusion that takes about an hour. The liquid antifungal aggravates his cognition and coordination issues. He will also receive physical therapy at home for awhile and then perhaps transition to PT back at the facility that we used last winter.
Yes, winter looms, so we have had our flu shots and are hoping for no hospitalizations this winter. Next week we will spend 3 days in Ann Arbor for ECP treatments and the MRI of his head. I am assuming that he will then be able to take less steroids. It is such a balancing act, and less ECP tipped the scale which caused the GVHD flare up. Probably.
It is a relief that gardening is coming to year's end. I have indoor projects planned, and we have already had a killing frost and snow flurries, and I even put on my long underwear today! Ha!
Love to all friends and family as our journey is now a saga!
Ron and Jan
Saturday, October 19, 2013
Mid-October
We are home from our trip up north. We love visiting the Leelanau Peninsula in the fall. Our first year of retirement in 2008 was the first fall trip north, and it was such a perfect trip...both great weather and great health. We returned to our favorite rock hunting beach, orchard, bakery, restaurants, and casino. We had a good trip in spite of our current challenges, and I am truly grateful that we could go. You see a lot more when you do all of the driving because your eyes are always open! Ha! We were in vacation mode, so it was a relaxing time. The colors were beautiful with lots of reds and gold but not enhanced by sunshine this year. We stayed at two places, and I hauled our things in rainfall both times. We brought home some pretty rocks and several with Petosky fossils. A good trip for us.
We have two days in Ann Arbor this week. Ron will see his transplant doc, Dr. Magenau and also the main doc of the clinic who will also evaluate his graft versus host disease. I don't think that they will taper the steroids this week because I think changes will be made with his anti fungal med and anti pneumonia med; due to side effects. Usually, not too many things are changed at the same time, so the cause and effect can be understood. Ron's quirky behaviors have increased in the last two weeks. I have always been a patient person, but my patience is fine tuned now!
On our trip to Ann Arbor, we will visit Ron's mother who is increasingly becoming weaker. Hospice is supporting her caregiver with services. So much to think about and work through mentally and emotionally.
We had company today! Cale's family came for the day, and we had a relaxing time. We enjoyed the Buckeyes game, picked the only 3 pumpkins, a few tomatoes, apples, and snake gourds and threw a whole bunch of rocks into the lake. We also read a few books and baked cookies. And Jack read a book to me! Joey had visited a one room school museum on a field trip, so I showed him his great great grandparents McGuffey readers and slate, and he showed me his cross country medal. Allison loves to be read to. Good medicine for Grammy...so much value in the simple pleasures and still considering myself a lucky person.
We have two days in Ann Arbor this week. Ron will see his transplant doc, Dr. Magenau and also the main doc of the clinic who will also evaluate his graft versus host disease. I don't think that they will taper the steroids this week because I think changes will be made with his anti fungal med and anti pneumonia med; due to side effects. Usually, not too many things are changed at the same time, so the cause and effect can be understood. Ron's quirky behaviors have increased in the last two weeks. I have always been a patient person, but my patience is fine tuned now!
On our trip to Ann Arbor, we will visit Ron's mother who is increasingly becoming weaker. Hospice is supporting her caregiver with services. So much to think about and work through mentally and emotionally.
We had company today! Cale's family came for the day, and we had a relaxing time. We enjoyed the Buckeyes game, picked the only 3 pumpkins, a few tomatoes, apples, and snake gourds and threw a whole bunch of rocks into the lake. We also read a few books and baked cookies. And Jack read a book to me! Joey had visited a one room school museum on a field trip, so I showed him his great great grandparents McGuffey readers and slate, and he showed me his cross country medal. Allison loves to be read to. Good medicine for Grammy...so much value in the simple pleasures and still considering myself a lucky person.
Saturday, October 12, 2013
Pushing Into Fall
As I read my last entry, I see that events played out as anticipated. The bonus was that the fall weather was glorious this week. It was 78 degrees today when we took out the docks. Because I have memories of spitting snow on spring and fall "dock days", today's sunny, warm weather was great. The down side was knowing that it would have been a great day for a pontoon ride! BUT so glad that this fall ritual is done.
Ron had his two ECP light treatments for the month of October on Wednesday and Thursday. It was good seeing our ECP nurse friends again. Ron takes ear plugs because we talk and laugh during his treatments. I also bounce ideas and concerns off them...great support for me. His steroid dose was tapered, so we are grinding along in the right direction again. His new antibiotic seems to have affected his liver enzymes so something new to follow and learn about. I am also spot checking his glucose level for a few days. The steroids cause it to be higher but not at a level where he has needed insulin yet. Have to keep on my toes!
We are really in a pretty good spot and looking forward to sightseeing in Michigan this week and starting to think about our trip to Virginia in November.
Love to all,
Ron & Jan
Ron had his two ECP light treatments for the month of October on Wednesday and Thursday. It was good seeing our ECP nurse friends again. Ron takes ear plugs because we talk and laugh during his treatments. I also bounce ideas and concerns off them...great support for me. His steroid dose was tapered, so we are grinding along in the right direction again. His new antibiotic seems to have affected his liver enzymes so something new to follow and learn about. I am also spot checking his glucose level for a few days. The steroids cause it to be higher but not at a level where he has needed insulin yet. Have to keep on my toes!
We are really in a pretty good spot and looking forward to sightseeing in Michigan this week and starting to think about our trip to Virginia in November.
Love to all,
Ron & Jan
Sunday, October 6, 2013
Weekly Update
For our anniversary, we went to Caruso's, an Italian restaurant near home. It was a nice outing for us. Wow! And now it is October; that seems amazing to me. We did make our one day trip to Ann Arbor for Ron's immunity infusion. From check in to leaving, it takes about 6 hours. This is an infusion of antibodies from over 1000 people who have donated blood. IVIG.
We visited Ron's mother on our way home. She is 92 and lives in a foster home that provides nursing home care in an amazing, caring family setting. She is failing quickly now; she has not had a major health event. Basically, she is just wearing out. Her home is about 10 minutes from Rick and Tammy's barber shop in the Airport Road Meijer store in Jackson, MI. (Rick is Ron's brother.)
Ron's med changes have controlled his GVHD but also have aggravated his coordination and personality changes, but it is manageable. His prednisone dose should be tapered this week. We will be in Ann Arbor two days for ECP, the light treatments and check by the doc or PA.
The pontoon will go into storage this week. The weather just became autumn-like today. The last six weeks have been beautiful. Could the skies be any bluer than they are in September? Now we are enjoying the day to day changes to fall colors. Next weekend two of our Amish friends are going to come and help take out both Hover docks. I have been doing fall gardening at a very lesiurely pace.
We have our reservations made for our trip north to the Leelanau Peninsula. Both of us are looking forward to visiting some favorite places in that area. Ron is not allowed to drive, and I have become "the driver", and he is the navigator...one of our many role reversals!
We visited Ron's mother on our way home. She is 92 and lives in a foster home that provides nursing home care in an amazing, caring family setting. She is failing quickly now; she has not had a major health event. Basically, she is just wearing out. Her home is about 10 minutes from Rick and Tammy's barber shop in the Airport Road Meijer store in Jackson, MI. (Rick is Ron's brother.)
Ron's med changes have controlled his GVHD but also have aggravated his coordination and personality changes, but it is manageable. His prednisone dose should be tapered this week. We will be in Ann Arbor two days for ECP, the light treatments and check by the doc or PA.
The pontoon will go into storage this week. The weather just became autumn-like today. The last six weeks have been beautiful. Could the skies be any bluer than they are in September? Now we are enjoying the day to day changes to fall colors. Next weekend two of our Amish friends are going to come and help take out both Hover docks. I have been doing fall gardening at a very lesiurely pace.
We have our reservations made for our trip north to the Leelanau Peninsula. Both of us are looking forward to visiting some favorite places in that area. Ron is not allowed to drive, and I have become "the driver", and he is the navigator...one of our many role reversals!
Thursday, September 26, 2013
For better for worse...
..in sickness and in health, to love and cherish.. I am thinking of our wedding vows because today is our 43rd wedding anniversary. A little trivia: Ron was almost 17, and I was 18 years old when we had our first date. He was a senior in high school, and I was a sophomore in college, and we worked in the same Indiana Tollroad restaurant. A lot of time and shared life experiences have passed. We have had a blessed life.
Ron thanks me every day for taking care of him, and I remind him that I will always be here to take care of him. We vowed to do so, but it is out of much more than a sense of duty.
I am feeling mushy on our anniversary.
I have been holding off writing this entry until after yesterday's trip to Ann Arbor. I knew that Ron's skin was showing signs of graft versus host disease again, so I knew that some changes in meds would result. It is considered "a flare up", and liver enzymes were elevated more too, so it is involved as well which has been the case in the past flares. His lungs sounded a little crackly, so he had a chest X-ray too. So in the present his prednisone dosage is increased which means he has less immunity, so he has new meds for his lungs and is going to go back on the anti fungal that they stopped in July. I am hopeful that his cognitive changes will remain stable. The doctor's office has called today, and he needs an infusion to boost immunity. We will travel back to AA next week. He is also going to be seen again by the BMT head doc in regard to his chronic GVHD. Everything is a balancing act between controlling his GVHD (the fight between his own body and his new bone marrow-new immune system) and opportunity for infections. That is why he continues to take steroids, 2 antibiotics, antiviral, antifungal, and meds especially for his lungs. The meds for his lungs are similar to COPD regimen.
If he isn't able to tolerate the antifungal, I will give him IVs at home again. This would be the same as we did the first 8 months after the transplant when we lived in our AA apartment. I would use his port; I don't have to do IV pokes. Okay, I was going to keep this concise, and I am rambling. I am having our Edge repaired (computer issues)so am sitting at the dealership. I am rambling.
Ron played some golf with George this morning after rolls and juice with Troxells and Griffiths, and now he is napping. We have plans to go out for an anniversary dinner this evening.
Love to all of you. Thanks for the messages, emails, visits, prayers, positive thoughts, texts, etc. everything helps us cope.
Love, Ron and Jan
Ron thanks me every day for taking care of him, and I remind him that I will always be here to take care of him. We vowed to do so, but it is out of much more than a sense of duty.
I am feeling mushy on our anniversary.
I have been holding off writing this entry until after yesterday's trip to Ann Arbor. I knew that Ron's skin was showing signs of graft versus host disease again, so I knew that some changes in meds would result. It is considered "a flare up", and liver enzymes were elevated more too, so it is involved as well which has been the case in the past flares. His lungs sounded a little crackly, so he had a chest X-ray too. So in the present his prednisone dosage is increased which means he has less immunity, so he has new meds for his lungs and is going to go back on the anti fungal that they stopped in July. I am hopeful that his cognitive changes will remain stable. The doctor's office has called today, and he needs an infusion to boost immunity. We will travel back to AA next week. He is also going to be seen again by the BMT head doc in regard to his chronic GVHD. Everything is a balancing act between controlling his GVHD (the fight between his own body and his new bone marrow-new immune system) and opportunity for infections. That is why he continues to take steroids, 2 antibiotics, antiviral, antifungal, and meds especially for his lungs. The meds for his lungs are similar to COPD regimen.
If he isn't able to tolerate the antifungal, I will give him IVs at home again. This would be the same as we did the first 8 months after the transplant when we lived in our AA apartment. I would use his port; I don't have to do IV pokes. Okay, I was going to keep this concise, and I am rambling. I am having our Edge repaired (computer issues)so am sitting at the dealership. I am rambling.
Ron played some golf with George this morning after rolls and juice with Troxells and Griffiths, and now he is napping. We have plans to go out for an anniversary dinner this evening.
Love to all of you. Thanks for the messages, emails, visits, prayers, positive thoughts, texts, etc. everything helps us cope.
Love, Ron and Jan
Saturday, September 14, 2013
Living in the Moment
I have decided to live in the moment and stop googling for information that just scares me when we do not yet know what is causing Ron's cognitive decline. His spinal fluid and blood were tested for quite a variety of viruses and other organisms, and no answer was found. The MRI definitely did show reason for mental status changes, but the cause has not yet been determined. The screening by the neurologist and the full work up by the neuropsychology clinic have identified and measured areas of deficit. This correlates with the areas of the brain that are affected. It won't be the first time that I have asked myself or others "why?" and not found an answer.
We continue to enjoy family, beautiful end of summer weather in Michigan, and our home on Gilead Lake. We are in the process of planning an October trip up north for 3 days to visit some of our favorite places and see fall colors. We do not return to AA until September 25. I am accepting that this is not an urgent health matter that requires urgent treatment. Unless there is a change, I am going to live in the moment.
Ron and I are enjoying college and pro football and of course, the Detroit Tigers. His memory is good, and he enjoys reminiscing about many memories, near and far but has some short term memory issues. He continues to sleep a lot, usually at the least 14 hours each day. He is often quiet for long periods of time when he is awake and sits with his eyes closed. He still reads the sports pages in his newspapers. He has difficulty synthesizing information to make good judgments and plans...called executive function. He has difficulty with numbers and spatial orientation, and he has weakness in his legs and balance issues. He has no pain, is usually mellow, and does not really comprehend or care that his abilities have changed. I think this is good, and he still has a sense of humor.
His chronic GVHD (rejection) is being treated with photopheresis light treatments that will now be monthly. (after 12 weekly two day treatments followed by 6 months of two day biweekly treatments) He receives a steroid infusion boost once a month and is on a low dose of prednisone daily. The GVHD continues to affect his skin, especially his back. He has medications to treat his lungs which are also affected. Even though his treatments are monthly starting this 9th month, he will keep his Neostar central line which is a port, so he does not have to have pokes for lab work or treatments. ECP would require two IVs each time.
Well, that was probably a lot more information than you really wanted to hear! I had to cut myself off; I was on a roll. I am thankful that we still enjoy each other's company and can get out and do things. Ron enjoys eating out, and there was almost a whole year when we couldn't do that. So we move forward and try hard not to fear the future.
Living in the moment,
Ron and Jan
We continue to enjoy family, beautiful end of summer weather in Michigan, and our home on Gilead Lake. We are in the process of planning an October trip up north for 3 days to visit some of our favorite places and see fall colors. We do not return to AA until September 25. I am accepting that this is not an urgent health matter that requires urgent treatment. Unless there is a change, I am going to live in the moment.
Ron and I are enjoying college and pro football and of course, the Detroit Tigers. His memory is good, and he enjoys reminiscing about many memories, near and far but has some short term memory issues. He continues to sleep a lot, usually at the least 14 hours each day. He is often quiet for long periods of time when he is awake and sits with his eyes closed. He still reads the sports pages in his newspapers. He has difficulty synthesizing information to make good judgments and plans...called executive function. He has difficulty with numbers and spatial orientation, and he has weakness in his legs and balance issues. He has no pain, is usually mellow, and does not really comprehend or care that his abilities have changed. I think this is good, and he still has a sense of humor.
His chronic GVHD (rejection) is being treated with photopheresis light treatments that will now be monthly. (after 12 weekly two day treatments followed by 6 months of two day biweekly treatments) He receives a steroid infusion boost once a month and is on a low dose of prednisone daily. The GVHD continues to affect his skin, especially his back. He has medications to treat his lungs which are also affected. Even though his treatments are monthly starting this 9th month, he will keep his Neostar central line which is a port, so he does not have to have pokes for lab work or treatments. ECP would require two IVs each time.
Well, that was probably a lot more information than you really wanted to hear! I had to cut myself off; I was on a roll. I am thankful that we still enjoy each other's company and can get out and do things. Ron enjoys eating out, and there was almost a whole year when we couldn't do that. So we move forward and try hard not to fear the future.
Living in the moment,
Ron and Jan
Wednesday, September 11, 2013
More "no news"
...or maybe I should say no answers. We saw Ron's PA briefly today, and he told us that all tests that they have run so far are negative. So there is no definitive answer yet into what has caused the brain abnormalities revealed on the MRI. We do not know at this time if his mental and coordination issues will be reversible, stable, or progressive. All of the unknown is difficult. If I can make a list, have definite things I can read and study, have procedures to mark on my calendar, etc., I feel much more in control. I don't know what is next. We are not scheduled to see Dr. Mag in clinic again until September 25.
I did spend an hour with the social worker for the clinic. We have known her over 3 years now as she has frequently touched base with us during Ron's many hospitalizations for chemotherapy, GVHD, and infections. She is gentle, has great insight, and suggestions.
I will let you know what's next when I know.
I did spend an hour with the social worker for the clinic. We have known her over 3 years now as she has frequently touched base with us during Ron's many hospitalizations for chemotherapy, GVHD, and infections. She is gentle, has great insight, and suggestions.
I will let you know what's next when I know.
Tuesday, September 10, 2013
No News is Good News?
I do not yet have any results of Ron's testing last week at U of M. He had a urinalysis, blood work, and spinal tap on Thursday. Things at home remain about the same, but the waiting is difficult.
Jan
Jan
Friday, September 6, 2013
Here we are!
Love, Ron & Jan
Thursday, September 5, 2013
BG, AA, BG
Ron really had a good birthday. We had dinner which included chocolate cake and ice cream with Cale's family. He opened gifts back at our BG Hampton room afterwards. Staying at the Hampton gives him the quiet and sleep time that he needs now. We have earned so many Hampton points that the 3 nights are free. I am looking forward to friends coming to visit me Friday. This day was full too with travel to AA for blood tests and his spinal tap which was done under sedation and with X-ray. Thank you, Dr. Mag for ordering it that way; Ron doesn't even remember it. He is spending hours lying flat but is allowed to eat at a table, then go back to bed. I didn't tell them it would be in a restaurant with friends, daughter-in-law Lisa's parents. Besides, lisa's dad is a doctor, and he can advise us if something develops. Some things you just feel like you gotta do, and this dinner was something both of us wanted to do. We are eating in BG.
Nice to be back in Bowling Green for a few nights. Still feels like home.
Nice to be back in Bowling Green for a few nights. Still feels like home.
Tuesday, September 3, 2013
A Special Day
It was a special day. Ron and I drove to Centreville, MI where the golf group from BG was playing on the first day of their Fall Trip. Ron used to play regularly with this group when we lived in BG, and he also made occasional trips to play with them early in our retirement. It was bittersweet to see the group in action with Ron on the sidelines, but it was a very good outing/reunion for us. Jim Treeger had a golf cart reserved for us to follow the group for 3 holes...then we were ready to head back home.
Ron's spinal tap (lumbar puncture) is scheduled for Thursday morning. We will travel to AA in the morning and hope to be back on the road by 1:00. We are having dinner with friends in BG Thursday evening.
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