Last Year's Pumpkins

Happy Halloween! Day #68

About a month ago, we had hoped that we might be able to travel to Toledo today to meet our friends, the Treegers, for our traditional Halloween dinner and /or travel to Bowling Green for Cale & Jess's annual Halloween potluck gathering and trick or treating. As of yesterday we set our hopes on not having to go back to the clinic today. But there is good news here. We have figured out which medication was causing side effects that definitely slowed Ron's progress, so Ron has started to do better again, and we will not return to the Cancer Clinic until Wednesday. That will be a long day with clinic appointments including an ECP light therapy treatment.
Thanks for your continued support in so many ways.
Love, Ron & Jan

Fall Colors in Ann Arbor

October 29, 2011, Day 66

Although exhausted, I felt wired last night before I could just relax and go to bed. The day had not gone as smoothly as I'd hoped, and I kept replaying everything in my head. We had too many appointments scheduled for the same day. Now that Saturday has passed, I am sure that we made the right decision to both come back to the apartment. Sleeping and eating are even bigger issues for Ron when he is hospitalized. There were no phone calls today to indicate that any of the blood or urine tests showed an infection, and today's bladder issues are not so aggravated. When they do blood cultures, they take blood from each of the three lumens of his neostar port in his upper chest.
I was able to take 2 short naps when Ron did, and that helped me. Yes, It was a better day.

Thursday & Friday, October 27 & 28, 2011

I am trying to think of a name for this roller coaster ride that we are living. Any suggestions? We had expectations of a steady improvement in bladder issues but it toggles back and forth. With another infusion of cidofovir today, perhaps Ron will find more relief over the weekend. He also had a transfusion of platelets which should help with the related bleeding of the bladder lining. We did spend the entire day in the cancer clinic, so we knew to use a wheelchair rather than the walker. The doc and PA visited us both in the morning and afternoon, discussing test results and symptoms Ron has shown with mental confusion. It was a definite consideration to hospitalize him today, but in the end we decided to go home. The doc made a few adjustments, and overall, both of us rest better at home. I would stay in the room with him if he were hospitalized.
Ron is not able to text right now, and I have heard a lot of messages come in on his cell phone, so I will try to get to those tomorrow and read them to him. He has difficulty with the remote control as well.
Ron did have an ECP light therapy treatment today; his skin and gut issues are mostly resolved. He is making progress, and his dosage of steroids decreases each week. He had his evaluation by a physical therapist, and she will be back Monday morning for his first session of guided exercise. We are adding more items to Ron's diet. Grilled cheese and hot dogs have been popular this week. Lactose intolerance is a common post-transplant problem, so he takes lactaid prior to eating dairy. He does not eat much, and has lost close to 40 pounds. His weight fluctuates 10-15 pounds with retained fluid variations.
Enough for tonight. Tomorrow will be a better day. I understand now how crying and laughing are closely related. I have found myself laughing in situations where I find my reaction inappropriate. It must be another coping mechanism.
From Ann Arbor, love to all.

Tuesday-Wednesday October 25-26, 2011

Ron's physical therapy will start tomorrow. An activity plan with goals and a means to measure progress are going to be helpful. At this point we don't really don't know what reasonable expectations are for Ron to regain his strength. The steroids have taken a toll; he is not able to walk unassisted. The walker has been a godsend, and for hospital appointments that require several stops, wheelchairs are available at the door. There are always other family members or hospital personnel who offer to help us at every turn. (especially getting off and on elevators). I carry our belongings in a samsonite wheeled large briefcase--appointment info, meds, snacks, water, IPad, etc.
Ron has had slight relief from the bladder issues today. I hope he makes a lot of progress rapidly. If he could just sleep an hour at a time, it would help him so much.

Monday, October 24, 2011

To care-givers everywhere who also have family members still in your home who depend on you and/or those of you who also work, you are amazing! Caregiving is my full time "job", and I know that I would have no time or energy for much of anything else. I have thought at times that I am glad that we are in an apartment here, and I can't see things at home that I would want to do. I have one focus.
Today's appointments went well. The IVIG to treat the immune system was very effective--as shown by a blood test. They have tweaked Ron's meds and he is having less hydration because of his swollen feet. His breathing treatment today went well. It is done right in the clinic and only takes a few minutes. It is a monthly treatment.
We plan to be at the apartment until Friday. Multiple appointments are scheduled for Friday, starting with 7:30 bloodwork and with the last appointment starting at 5:30. We will be crawling home about 7:30 in the evening. This will be the day when I sleep on the bench during ECP. Actually, it is a lovely nap.

Day #60: October 23, 2011

What a beautiful fall weekend in Michigan! I only ventured to the Meijer store which is only 2 miles away, but what felt really good about the weekend was relaxing on our own schedule; that is something we had enjoyed about retirement. In the face of all that we have been experiencing with Ron's transplant, we have what we call "our new normal"---that is our coping mechanism. It is probably common to anyone in a challenging situation.
Tomorrow we go back to the Cancer Clinic in the morning, and then we will know more specifically what Ron's treatments will be for this week. At this time we know that he will have bloodwork at 9:00, doc at 10:00, and breathing treatment at 11:00. The breathing treatment is preventative for PCP pneumonia, which is the pneumonia that is often a complication of AIDS patients and others with a suppressed immune system. The ECP light treatment is moved to Friday afternoon, followed by another infusion to treat the viruses. The bloodwork tomorrow will let us know the progress against the viruses. The graft versus host symptoms of the skin and gut have cleared up. Where the skin looked sunburned, it has browned, and is peeling. Our "if only" at this time is for the bladder symptoms to clear up. Ron never gets to sleep more than 45 minutes at a time, and often it is only 20 minutes.
We continue to be grateful for the support you are showing through messages, cards, prayers, positive energy, and good thoughts sent our way. It is so appreciated.
Love to all,
Ron & Jan

Saturday Morning: October 22

Getting up at 5:30 on my own terms felt good. Ron has had a restless night, so naps are in order for the day. I have been reading, curled up with a fleece blanket on this frosty 27 degree morning. I thought how timeless it is to be reading next to a fireplace enjoying its warmth and light. Never mind that I am reading a book on the IPad and the fireplace is gas. Enjoy the weekend! It's late October, and there is frost on the pumpkin.

Day 58: October 21, 2011

Exhausting. We left for the Cancer Clinic at 8:00 this morning and were back home to the apartment at 6:00. All stops were scheduled, and this is what we do for Ron to stay out of the hospital as an in-patient. Both of us have remembered how great it feels to have the weekend arrive. Appointments are scheduled back in the clinic on Monday morning, but ah-h-h two days to be on our own schedule sounds wonderful!
Ron tolerated the IV IG infusion well. It was a collection of antibodies from 1000 donors and should boost his immune system. The second infusion was a treatment for the BK and CMV viruses which make him feel crummy and have unpleasant symptoms, especially affecting the bladder. So now we are back home, and he is having his at-home meds and IVs and mostly napping.
Glad today is over and hoping today's treatments start to make him feel better.

Tues.- Wed.- Thurs. Oct. 18-20

This is Day #57. It seems like ages ago that the bone marrow transplant happened. What is routine now was unimaginable 57 days ago. Grinding through. Wednesday was our long day with labs, doctor visit, and ECP light therapy in the afternoon for 4 hours. I now have my routine of napping on a hospital bench outside ECP for part of the treatment time. I am not the only spouse or parent doing the same. It is a quiet location, and the nurses bring us pre-warmed blankets and pillows. Seven patients are treated at a time in ECP: 7 in the morning and 7 in the afternoon. To have ECP, your platelets can't be too low, so Ron had had a platelets transfusion on Monday.

The doc has put Ron on scheduled pain med instead as "take as needed" so he does not have peaks of bladder- related pain. As the BK virus subsides, he will have more relief. The "copies" (count) of both viruses is going down/ improving. He is also taking less steroids each week, so the treatment for the viruses will be more effective.

What's next? On Friday Ron will have 2 infusion treatments. One is the 3rd treatment for the viruses. This week's infusion is 20% of last week's dose so not nearly as toxic. The doc likes to use military terminology with Ron, and he called last week's infusion the really big mortars--- which led to a weapons discussion. On Friday he will also have an IV IG treatment to boost his immune system which is very low. This will be a 6-7 hour outing for us. They will also do lab tests again to check CBC and electrolytes. He started new meds for potassium and phosphorus this week. A person's body is a finely tuned engine! Next week a monthly breathing treatment will be added to prevent PCP pneumonia, and he will have a bone strengthening infusion.

Today Elizabeth, Ron's visiting nurse, is making a visit and she will set up Ron's physical therapy which has been prescribed for 3 months-- starting in our apartment and hopefully, ending in Coldwater, MI, near home. Another new member of Ron's medical team is a pharmacist, Shannon, who met with us during the clinic visit regarding all medications.

This was a load of new information. Daily blogs spread it out, but some days are just too full to blog. Writing continues to not only be good therapy for me but a way to record Ron's journey and best of all, a great way to communicate with family and friends.
Love to everyone and thanks for your continued support in so many ways.
Love, Ron & Jan

Sunday-Monday, October 16-17, 2011

What a long day! I called the BMT doc who was on call Sunday to see if there was a different med that Ron could take to help give him some relief from the bladder symptoms which are a result of the BK virus that is in the lining of his bladder. He told me that he would set it up for him to see his doctor this morning. The clinic called early and said that they had ordered bloodwork to be done prior to seeing Dr. Magenau. Ron's platelets had dropped, so he had a platelets transfusion to help his bladder heal. His graft versus host symptoms appear in check, so they backed off on more of the steroids. Although we have packed our bags In the event that Ron would be readmitted for the last 3 appointments, we are home again. Ron's IVs will finish late tonight. He is very brave and has endured much during the past two weeks especially. He usually needs help getting up from the bed or a chair, but he insisted on using his walker to go from one area to another. The doc has prescribed regularly scheduled pain med to help him get through this rough patch. Send your kind thoughts, prayers, and warm wishes our way! ...hoping to be turning the corner soon.

Friday-Saturday, October 14-15

The second infusion went well...no long wait like the first time, so I didn't walk in bawling this time. Funny odd what can push you over the edge of composure. Ron is not scheduled to go back to the clinic until Wednesday. Backing off steroids has made him even weaker, and with an extremely compromised immune system, the possibility of falling and being exposed to an illness are worrisome. I am diligent to the point he asks me to back off at times. He is an amazingly agreeable patient most of the time.
This morning he has stayed in bed and is sleeping. Isn't it hard to imagine him still in bed at almost noon? The PA told me yesterday that lots of sleep is good to help his body heal.
Go Spartans! ...and Buckeyes, don't embarrass yourselves. I hope they have a better game; our Buckeye Nation is in an uproar. Guess I will get out of my jammies and put on a Buckeye shirt. Tonight I will be wearing some Detroit Tiger gear.
Love to all of you, Ron & Jan

Day #50 Thursday, October, 13, 2011

We have been going through a huge collection of mail brought to us from home. The number of catalogs and return address labels we receive is amazing. The inspirational messages on cards and the handwritten notes of encouragement are priceless. Thanks for communicating with us through email, the blog, and text messages too. We feel very connected to family and friends, and as one friend put it, that support is profound.
Ron's PA called today to let us know that a blood test result indicated that Ron's immune system has reached a low level that requires an infusion treatment. It had been trending down the past few weeks, so this was not totally unexpected. I believe this treatment is called an IV IG. He will meet with us Friday afternoon to let us know the specifics. Ron already has his second infusion treatment for the viruses scheduled for 3:00 Friday.
Now onto sports: we enjoyed the Detroit Tigers victory today... We were not ready yet for their season to be over! Everyone is gearing up for the Michigan-Michigan State football game Saturday. We especially look forward to the weekends with no medical appointments and many games to entertain us. It is a great diversion.
Love, Ron & Jan

Wednesday, October 12, 2011: Day #49

Wednesdays are our big day with bloodwork, 4 hour light therapy ECP treatment, clinic visit with Ron's primary bone marrow transplant doctor, and a stop at the pharmacy (located inside the hospital). We left the apartment at 6:30, and returned about 4:00. Then Ron still had his at home IVs to do which take a total of about 6 hours. The BK viral infection which is primarily symptomatic in the bladder is causing the most havoc now. The doc added another medication to help settle the discomfort. He also told us that Ron is doing well enough at home to not readmit for hospitalization at this time. That is one of our goals, but we had packed for the hospital on the last 2 Wednesday appointments.
Ron's skin continues to show improvement (red rash areas turn brown as they heal--covered 70% of his body), so the doctor tapered his steroid dosage again. He has to do this gradually to avoid another GVHD skin-gut flare-up, but the steroids continue to weaken his muscles. We are in the midst of a challenging and difficult period of recovery. Ron's next appointment is Friday afternoon when he will receive his second cidofovir infusion at the Cancer Center Infusion Room. This treatment is fighting his viruses and takes about 3 hours. Today when we were waiting to see the doc, I was again reminded of things the U of M does to help the patients cope. A woman was giving patients "cancer warrior" t-shirts, a guitarist was playing soothing music, and a hospitality cart passed with gifts for patients (snacks, magazines, polartec throws, etc.)
We know you are out there thinking of us and supporting us in many ways. It is so appreciated.
Ron & Jan

Day #47: October 10: Columbus Day

We are so happy to feel like we're treading water. Ron's bloodtests today did not indicate that he would need a platelets transfusion tomorrow. It was a near miss, but we are happy to be staying home tomorrow. Wednesday is our big day with ECP light therapy for 4 hours in the morning and clinic appointment in the afternoon. So hopeful that everything will continue to improve...

Home Sweet Home: Ann Arbor, MI

Ron & Jan Hover
1455 Oak Valley Drive
Apt. 103 Bldg. 26
Ann Arbor, MI
48108

Okay, not the whole building!! We have a one-level ground floor apartment. It has two bedrooms and two bathrooms but best of all, it has its own laundry room. The fully furnished apartment has a bar looking into the living room area from the kitchen. There is also a dining area on the opposite side of the kitchen which we are using as an office. We have a covered parking area and can use the pool, exercise room, and walking paths. (so far just have used the walking paths). Our building is located so that we look out at a grassy area and trees.

Extracorporeal Photopheresis: ECP

...Ron receiving an ECP light treatment in his blood. As a part of this study, he also receives 2 Embrel injections each week. ECP is once a week for the first 6 weeks of treatment. It continues at longer intervals for a year. He had his 3rd ECP Wednesday. A centrifuge separates white blood cells, red blood cells, and plasma. The white blood cells are treated with a drug, UVADEX; UV light activates the drug, and then the blood is returned to Ron. This therapy treats GVHD symptoms.

Day # 44. October 7, 2011, Friday

Another challenging day. Doctor Magenau told us today that this would be a long haul. Ron continues to take a heavy dose of steroids to control his graft versus host disease which for him causes skin and GI tract problems. In addition he is diagnosed with 2 viruses which have developed and are a challenge to treat because he is on steroids. The treatment plan for now is at home medications in the form of ointments, pills, and IV infusions which I am able to administer. He also returns to the hospital 4 days next week for labs, infusions that can't be done at home, light therapy, and doctor visits. We much prefer this instead of hospitalization. The steroids basically kick your butt, so Ron is using a walker now; it especially effects your big muscles; he really notices it in his thighs.
His weight was almost the same today, so adding gummy worms and Dots to his diet must have helped! He eats very small portions of everything. Nurse Jan was very tired today because of watching the Tigers beat the Yankees. It was a nerve wracking game, so I had a terrible time falling asleep. Then up early and off to the hospital!
We are excited about the weekend at home in the apartment. Love and thanks for your support, Ron & Jan
1455 Oak Valley Drive
Apt. 103. Bldg. 26
Ann Arbor, MI. 48108

Thursday, October 6, 2011

We have stayed at home again today. Ron has a visit to the Cancer Clinic tomorrow; at that point we will have more information about the viruses. An infusion of cidofovir to treat the second virus is scheduled. For you with medical contacts, it is the BK virus.
Ron and I went out for a drive today. The fall colors are beautiful already, and with the bright sunshine, it really showed them off. Tonight we watch the Tigers in the decision play-off game.
Tomorrow will start early for us. We will need to leave for the hospital by 8:00 and will be there at least all morning.
Thanks to everyone for your good wishes delivered in a myriad of ways. It means more to us than you probably realize.
Love, Ron & Jan

Days 41-42. October 4-5, 2011

We are back home after a full day at the hospital. Ron had a lab appointment, doctor appointment, and his third light therapy. He continues to feel very weak due to the steroids he takes which combat the symptoms of graft versus host disease. He has now developed a second virus because of his suppressed immune system. The viruses are ones that he carried but didn't develop when his immune system wasn't compromised. His steroid dose has been decreased, but it is a balance between steroids to control GVHD symptoms and allowing the immune system to work.
Today's blood test results will determine if he needs to be hospitalized again for more aggressive treatment. He continues to lose weight but has not had a fever. His goal is to eat at least 600 calories a day. He has been able to add a few gummy worms and Dots to his list of food allowed, so that has added calories and carbs to his intake; he is on a very low fat diet. He does not want to go back in the hospital unless absolutely necessary. We really like Ron's primary transplant doctor, Dr. John Magenau and his clinic P.A., Tim Higgins. They are a good team. And Ron and I continue to be a good team.

Sunday-Monday Oct. 2-3 Days 39-40

When we are at the hospital, we log on to the Internet on the hospital network. At the apartment we use our Verizon Five-Spot wireless which doesn't always work here as well as it does at the lake. Yesterday it was especially frustrating, so in the event this continues being an issue, I might not be able to make my daily entry.
That being said I am going to admit that Ron's recovery has been more difficult than I imagined. He is the most physically fit and healthiest 63 year old I know, so it has caught me off guard that there are stubborn complications as he continues his journey to good health again. We are continually told that the issues with graft versus host disease are expected and that his symptoms are not in a severe stage at this time. The main issue now is handling the weakness - no appetite - dehydration cycle which is hard to break out of. The U of M Home Med service which delivers his medical supplies to the apartment is bringing extra hydration for his daily IVs. If this cycle can't be broken at home, he will be hospitalized again. After talking to a BMT nurse at the clinic today, that is a real possibility when we go for his clinic appointment Wednesday morning. The CMV virus is still evident in his blood, and that count has risen since discharge and the change to oral medication for it. His other blood cultures drawn Friday are still negative. The lab continues to watch them for several days.
The hardest part of caregiving for me is seeing Ron so sick.
Thanks to everyone for continued support, prayers, good wishes, and positive thoughts. We can feel the good vibes out there!
Love, Ron & Jan

Saturday, October 1, 2011: Day 38

No news on the blood cultures is good news. A peaceful day here in the apartment: watching football, napping, doing a little laundry and cleaning, and sorting through mail from home. Trying to absorb the reality that October has arrived, and Ann Arbor has a frost warning for tonight! How did that happen?!