May Happenings in Pictures

Sad Duck has resumed his summer life with his Canada Geese family that includes him yearly. Then he is so sad in the fall when they fly away that he cries and cries out on the lake. He is not able to fly.

The swans are staying on the lake longer this spring. There is one who swims alone, and I caught him in flight as we rounded a cove on one of our first pontoon rides this week.

I had to include the picture of Ron, Rick, and GG/Esther/MOM Hover. Ron and Rick must have learned to wear "power red" from her!

Post #345...amazing!!

I plan to load a couple pictures below but will have to work from the computer. It feels like summer today, and we are enjoying the weather and not being in AA this week. Things are going smoothly, and by Ron's next doctor appointment, I think he may be able to drop a couple meds. His steroid induced diabetes is resolving; he developed diabetes in January when he had pneumonia. It would be great if he could switch to a pill and not require daily injections. (that would be good for both of us.) He usually only has one insulin injection a day now..down from four.
Ron has been on daily injections for bloodclots in his leg; this complication developed in November and requires six months of injections. We will soon be at the six month benchmark. No injections would be a notable change in our daily routine.
I am anxious to see next week's bloodwork and am hoping the trend to more normals continues. In the bone marrow transplant world, his bloodtest results are good.
We traveled to Spring Arbor to celebrate Mother's Day with Ron's 92 year old mother who resides in assisted living. Ron's brother and wife, Rick and Tammy, came too, and both of us brought brunch food. Yummy! Esther struggles with everyday living tasks and has some confusion. She still insists on wearing high heels (pumps) and has strong opinions about politics and wanting to be more independent.
Hope you are enjoying this great warm weather and looking forward to summer.
Love, Ron & Jan

Ann Arbor: Two Days

We drove to AA this morning for appointments that started at 9:30. I prefer coming the night before. I worry about oversleeping or a sluggish morning, and as a result, I don't sleep well. Ron had bloodwork (it looked good)and his ECP light treatment. We both crashed back at the Hampton. Ron is not cleared to drive, so I continue to be "our driver".
Tomorrow Ron will meet with Tim, his Bone Marrow Transplant PA. He also has an appointment with his eye surgeon who did the cataract surgery on his right eye. It made a HUGE difference in his vision. The total vision loss in his left eye is irreversible. Thirdly, he has another ECP treatment which takes about 2.5 hours. Then we will drive home. Our new dock was put in today, so we are anxious to see it and have the pontoon delivered. Our first ride is usually with us wrapped up in blankets, and I hear that it will be cooler this weekend.
We are cruising along, and improvement is an ongoing process. The neurologist had told us that improvements could continue for another year or more, so we celebrate each small step and continue to be thankful for the overall improvements in the past months.
Love to all,
Ron & Jan

Thanks!

We have noticed the donations made on Cale's Relay for Life website (an earlier blog entry) and will continue to follow it. Thanks. It has now been over 3 years since Ron's first diagnosis of AML leukemia and almost 2 years since his relapse which resulted in more chemotherapy to bring him back to remission, so he could have a bone marrow transplant in August 2011. As you may also know, he had testicular cancer in 1981. He is a survivor!! This is in great part due to past and continuing research. Ron himself has agreed to be a part of several continuing research projects, and periodically has blood drawn and bone marrow biopsies for this purpose.

Ducks in a Row...

Actually, they are swans in a row! They are just passing through. Swans don't nest on this lake, and it is a special treat to see them on the lake or hear their whooshing wings when they are in flight. The cottage on the right is "Wee Cottage" where the Matt Hovers spend part of their summer.

Reporting good news...

We have returned from a scheduled "routine" three day trip to Ann Arbor. Ron had his two Extracorporeal Photopheresis treatments which treat his chronic graft versus host disease. To shorten: ECP light treatments for cGVHD. The medicine and UV light therapy treats part of his blood outside his body; then it is re-infused. The modified white blood cells are less reactive to his skin. At some point, hopefully, the white blood cells from his new bone marrow will become less combative. There has all ready been improvement. His treatments are every other week now, and his prednisone was tapered at the beginning of the month. He still takes antibiotics, anti fungal, and antiviral medicine daily because of his compromised immune system.
In addition to ECP Ron also had a CT scan of his chest, and his lungs are nearly healed from his staph pneumonia in January-February. This was great news of course! He had his monthly pentamadine breathing treatment while we were there, and on the first day he had an IVIG infusion which boosts his immunity. This infusion is a process that takes about 4 hours. It is an infusion of antibodies collected from about 1,000 donors.

We are still amazed with the improvement in vision in his right eye since his cataract surgery. He will see his eye doctor again during our next trip to AA.
Things are going well.
Love,
Ron & Jan

A Message from Cale Hover

First, I want to thank everyone who has viewed this blog. I know it has meant a great deal to my parents to know how many people took the time to get updates on my dad's condition.  I know that all of the blog post replies, emails, text messages, notes, and phone calls have helped my parents make it through such a challenging time.

I'm honoring my parents by participating in our local Relay for Life on May 17. I hope that you might consider making a donation to support American Cancer Society's efforts to provide a world with less cancer and more birthdays. My dad is living proof that ACS is succeeding in this goal. 

Thanks for your consideration and continued support.

http://main.acsevents.org/goto/choverbg

-Cale

Rain, rain, and more rain...

9 inches of rain in the last 10 days by our rain gauge, and the lake makes me a believer! Our spring fed lake is filling up after a significant lower level two weeks ago. It is a good thing! I am ready to get back out there and continue spring gardening. It is very windy and cool again to the point of some snow flurries, so I will break out the long underwear again.
Ron continues to gain strength slowly, and we enjoy walking outside when weather permits. This "no Ann Arbor" week has been relaxing. We shopped for new carpet, and have just enjoyed many consecutive days at home. Next week we will be in AA for 3 days.
So, not grinding but continuing to cruise like a slow pontoon boat ride. And we will actually be doing that before too many more weeks!!
Love,
Ron & Jan

Smooth sailing...

Bloodwork, doc appointment, and ECP went smoothly yesterday. After Ron's treatment today, we will head back to Gilead Lake and hope our warmer weather returns by the end of the weekend. Rain, highs in the 40s, and wind put the brakes on spring!
Ron's bloodcounts continue to inch closer to normal ranges. They are very good in the "bone marrow transplant world". His glucose readings are less radical, and he is requiring less insulin. When his glucose is high, there is good reason--he does love his candy, carbs, and cookies. We are discovering good sugarless substitutions. He feels stronger and has had me bring his golf clubs out of the downstairs and has even hit balls in the yard. He also pulled out one of his fishing poles. He has not golfed or fished for two years but is ready to start enjoying these activities again. Ron is very accepting of his physical limitations, so I think he will be able to enjoy golfing even though it will be on a different level.
Ron has also planned a trip, making reservations, and an itinerary for our trip to Germantown, Maryland for Andrew's graduation. We are looking forward to that in May.
Thanks for your continued support as you hang in there with us on this journey.
Love, Ron & Jan

Moving Forward

Recovery from cataract surgery is going smoothly. Ron's vision in his right eye is greatly improved. He can read the basketball scores on the tv now...and that's without his glasses!! We enjoyed the final four games tonight with the Griffiths. Happy Birthday to Uncle George, too!!! Ron will have an eye exam in 5 weeks and get his new glasses prescription. It would seem that the ECP treatments are working well for him, too, so it is good to be moving ahead. Although we didn't get our full week without AA, it is great having the eye procedure done and with such good results. Next week's trip to AA should be routine with a doctor visit and two ECP treatments--only one night at the Hampton.
I am getting out in the yard for some spring clean-up and early work in flower beds. I love seeing the day to day progression of spring, and this week will bring some rain and warmer temps, so things should really start to pop.
Happy Spring. Hope you are feeling renewed energy and hope as I am.
Love, Jan

Surgery went smoothly..

I have to admit that I was nervous! Over the past 3 years disappointing news has been dished out enough that I am a little gun shy. I feel like I am guardedly optimistic when a new situation is encountered, so I couldn't help but prepare myself on some level to be ready for less than good news after the cataract surgery. But not to worry, it went very well!! They had told us that Ron's eye would be covered, and other patients had opaque covers, so we did not expect Ron to be able to see until tomorrow, but his covering is clear plastic. Tonight we spend relaxing in the Hampton Inn room, and tomorrow we will see the eye surgeon (who is Ron's regular eye doc here). Then it is back to Spring Break for a week. It feels good to relax and let the stress go.
Love, Ron & Jan

Spring Break Cut Short...

...but not an emergency. We had planned on this being our full week at home, but when I called Ron's eye doctor on Thursday to schedule his cataract surgery, scheduling took on a life of its own. After follow up phone calls from U of M Kellogg Eye Center later that day and Friday, arrangements had been made for his surgery tomorrow, April 2. So we traveled to Ann Arbor this morning for pre operative history, physical, bloodwork, and lens measurement. All of that went well this afternoon, and the actual surgery is scheduled for 12:30 Tuesday. His eye will be covered after the surgery, so he will not be able to see at all for about 24 hours. We don't anticipate any complications.
Congrats to U of M for its representation of the Big Ten in the Final Four NCAA Basketball Tournament. GO BLUE!!

Spring Break Has Begun!!

Our "work" in 2013 has been to fight graft versus host disease with ECP treatments two days every week. Now Ron will transition to two treatments every other week, so we are "on break" until April 10. Ron is doing very well, and the treatments have helped his skin. His balance and walking have improved, and his gait is more natural looking. He is cautious as he walks because of depth perception issues with vision only in his right eye, and the cataract in the right eye affects his vision too. We don't have any more information yet regarding scheduling of his cataract surgery.
It feels like we are in a good place, and both of us continue to be optimistic for a good 2013.

No Drama This Week

And that is a very good thing! ECP treatments went smoothly as did Ron's check up with his transplant doctor. There are no medication changes except for minor adjustments with insulin to help control glucose. Steroids will be tapered at the end of the month. The goal continues to be control of graft versus host disease with ECP light therapy instead of high dosage steroids which have many side effects. After next week's treatments we will have a week that we do not have to make an overnight trip to Ann Arbor. That will be a treat for us! --only our second time in 2013.
What's next?? On April 1 Ron's prednisone will be tapered from 15 to 10 mg daily. Ron is cleared for cataract surgery, and arrangements for that will be scheduled soon. He will have a CT scan of his lungs in April. In April ECP will be two treatments every other week instead of weekly. During ECP 48 ounces of Ron's blood is spun in a centrifuge to separate white blood cells and some plasma. It is then treated with a drug that is exposed to UV light to activate the medication. The WBC/plasma altered collection is then returned to the body. Additional fluid is also infused with it. Ron has a central line with 3 lumens(a Neostar) that was surgically implanted in early February, so this two plus hour treatment is totally painless. He usually naps during most of the process as he rests in a recliner.
So...no drama this week. And now I am ready for a nap in my recliner--stress free.

Could we please have a little spring weather??

Now that would be good for the soul! Great being back home but getting ready to enjoy looking at water instead of a huge field of ice on the lake. It shouldn't be too many more weeks. We are enjoying college basket ball-- especially the Big Ten. We are Spartan and Buckeye fans with attachments also to the Hoosiers and U of M. That must sound very twisted!
So what about the eye issue? We went to ECP on Thursday, and the nurses and our PA Tim were concerned about the bleeding in the eye, so Ron was not able to have his treatment. Instead we went back to the Kellogg Eye Center to have the eye rechecked. They best described it as a big bruise on the eye, and it should clear in a week or two like a bruise on your skin. I was thankful to have it rechecked and appreciated the conservative approach to cancel ECP. To me it appeared to be more raised by that evening but the same this morning. This bruise is on the eye which does not have vision.
We have been stopping in Spring Arbor on our trips home from Ann Arbor to have lunch with Ron's mother who is 92. She lives in assisted living close to Ron's brother. Rick is her go-to man for groceries, appointments, coordination of services for her, frequent visits, and those quick visits when needed to fix her tv remote, lift chair, etc. They include her in their holiday festivities. Priceless.
I am very much hoping that next week's appointments are uneventful. It will be good to touch base with the doc regarding insulin dosing and this week's events. It feels like we are back on track today.

Settling down now...

Just another day in Ann Arbor putting Jan through the wringer.. ECP was at 11:00, so Ron had his preliminary bloodwork at 9:30. I like this schedule because we can move at a non-stressful pace at the Hampton. (very helpful when I have snow to remove from the car AGAIN) Ron's eye appointment was at 1:45, so I brought him lunch during the last part of ECP. So far so good.

I was glad that Ron was having his eyes checked because his high glucose at some point everyday affects his vision. The health of his right eye is even more important since he has irreversible complete loss of vision in his left eye. Mainly, I am thinking that I want the eye doc to reinforce how important it is to avoid foods that cause his glucose to go too high. The exam begins with the eye chart which is electronically projected, but even so, the E is still the largest letter. With his good eye, Ron cannot make out any of the letters until the solitary large E is projected. I had given him insulin at lunch as well as his Lantus after breakfast, but I know this is a time ..almost 2 hours after a meal when the glucose is high. The exam continued-- which includes a tear duct test, etc. For this, they attach small strips of paper to measure tear production.

Without trying to sound dramatic,it was gut wrenching for me. Over an hour passes before the main eye doc comes in, and he rechecks, and there is significant change since September's exam but not as bad on the recheck as an hour earlier. He would need a new prescription, but his vision is fluctuating, so we are in a holding pattern to change his glasses. The doc also tells us that he has a cataract, and in addition to the high glucose, that would appear to be the reason his nearsightedness has become worse. He can read okay. He will need cataract surgery when cleared by Dr. Mag. Personally, I think he needs a much higher platelet count, and I will insist it be done by a doc who does a lot of them every week.
To add to the stress, when the person who did the paper strip test removed the strip, it broke a capillary, and now as he puts it, his left eye looks like something you might want on Halloween. By this time, I am so relieved that he is not going totally blind that I find his comment very funny and break into hysterical laughter. His entire eye is bulging red, but as long as he can close his eye, I won't call the doc on call. Actually, something similar happened awhile back, and as long as he can close his eye, we can wait. It also helps knowing that we will be back in the clinic tomorrow morning. Indeed, through the wringer today.

Pure Michigan

Sad Duck and friend swimming with Canada Geese in open water...ice fishermen in the background!

Extracorporeal Photopheresis = ECP

The ECP treatments appear to be making a positive difference in Ron's GVHD. His skin is much improved, and he no longer has mouth sores. Graft versus host disease usually is apparent in skin changes first. Ron has had skin issues of varying degree from almost the first week after his transplant 18+ months ago. Deciding to commit to ECP treatment has been a significant time commitment. We have only had one week in 2013 that we have not had overnight stays in Ann Arbor. We will follow this same pattern for 3 more weeks! Then the treatments will be every other week starting in April. It will be a treat to just stay home for more than a 5 day stretch.
We continue to make adjustments to cope with high glucose readings. I never would have imagined that I could give so many injections!! The doc tells us that the levels should moderate as the steroids are reduced. I hope so. It helps that I like the diet changes. I suggested he try no sugary treats for 5 days to see how it affects his levels, so he is doing that and photocopied a little "Jan's 5 Day No Sugar Plan" sign that he has posted all over the house. --even one on my bathroom mirror! A nice side effect would be that I might lose a pound or two as time passes. Ron is slowly gaining weight-- just short of 160 pounds on our home scale.
Seeing some very early signs of the seasons changing: open water along the shore with Canada geese and sad duck swimming together!! AND ice fisherman still out farther fishing; as Niccole asked, "Isn't that dangerous?" (Ron & Marilyn, I have a great picture of this just down from your Michigan home.)The daffodils came up under the snow, and I saw one crocus blooming.
Love to all--
Thanks for hanging in there with your support and positive thoughts; it means a lot to us.
Ron & Jan

A Good Report...

Ron had a good doctor appointment this morning. He is recovering well from his pneumonia at the beginning of February. Last week blood was drawn to test for several viruses-- all were negative. His platelets and white blood counts had been trending down, but that has reversed itself as well, so only good news. He continues to get stronger and is riding his stationary bike again. He might return to out-patient PT when our weekly trips to Ann Arbor are done.
We were concerned about yesterday's snowstorm so left early for AA. It did not snow here, but we had a few inches at home. It will be nice to start having temps above freezing...even the 40s. Spring fever!!

In Like a Lion...

It is winter in Michigan! The sustained freezing temps and snow cover are as much as we have had all winter. Go figure. Ron's brother came and cut down a red oak that was broken, had an odd shape, and leaned towards where we dock the pontoon boat in the summer. It opens up our view and greatly relieves my mind to have it cut. It was amazingly solid though for the most part. I was a little sore from hauling and piling up the small stuff. It was a large tree..amazing energy and work by Rick.
Our big event yesterday was having our new Amish-made bed frame delivered. We love it. Today we did our big grocery shopping at Meijer in Coldwater and went out for lunch. Now I am pretty much just melted into my recliner. I am sure there will be some college basketball in my near future..or maybe a nap before the Michigan State vs Michigan game.
Ron continues to gain strength after his hospitalization for pneumonia. It was a scary time with the need for oxygen, two days in ICU, and lung cultures showing that his lung infection was MRSA staph. Amazing where you can sleep when there is no way you're leaving the hospital! The ECP light therapy is in its 4th week, and its purpose is to balance the immunity, so the donor cells do not cause so much havoc with GVHD. At the same time, Ron should need less steroids which have their own side effects...the main one making him more susceptible to infection. The other battle at this point is keeping his blood sugar under control with diet, fast acting insulin, and long acting insulin. Blood sugar needs to be controlled for your general system health and its potential for feeding bacteria in an immunosuppressed state. I am feeling more comfortable with my role in monitoring blood sugar and dosing insulin injections.
Next week we have two days in Ann Arbor again. This will be the pattern for March.
Love to all,
Ron & JAN