Day + 70 -- semi-normal

Doug is doing well; he has even gained a couple of pounds. He still has occasional dizzy spells and tires easily but by now that is just part of our semi-normal life. We have had friends over, and Doug even shook hands (and used his hand sanitizer afterward). That sounds funny, but the warnings we got from the transplant team are enough to make one almost paranoid. He is talking about maybe going to church this Sunday despite being advised to avoid crowds. At some point common sense has to take over -- I think if we are careful it will be okay.

We went out riding today on our recumbent trikes. They are so easy and require no balance; if Doug gets a dizzy spell he can just sit there until it passes. When we got them a few years ago it was because of my poor balance -- who knew that it would be good exercise for Doug's recovery! Riding them feels like a cross between a bigwheel and a go-kart. Buena Vista's mostly level streets are a perfect place to ride, and the weather was wonderful this afternoon.

I thought I'd better get a photo of the bald and beardless Doug without a hat while he is still hairless. He now has a slight mustache and a few beard hairs that would make a seventh grade boy proud.

We consider Doug's ongoing recovery a miracle. We continue to be so thankful for God's healing and all the support and prayers from friends and family.

Love to all.

Day + 62 -- slow but sure

We have been home for three weeks today. Doug is continuing to do well and is stronger every day. His blood counts are low, but "not alarmingly so" according to the oncologist. He still has occasional dizzy spells due to some of the meds and low blood pressure, but as long as he is careful when bending over it hasn't been a big problem.

A lot of the dietary restrictions are lifted now. We had our first "restaurant meal" today -- takeout from Subway. And Doug went into a store for the first time since the transplant -- we went to the local hardware store for a few quick items. Those of you who know Doug won't be surprised it was a hardware store. We have friends coming from Omaha to see us the first weekend in June, so that will probably be our first real restaurant outing. We are just supposed to avoid crowds and make sure the food is freshly prepared.

The transplant social worker called yesterday to check how we are doing. We were happy to report that both of us are doing well and enjoying our home. We continue our daily walks, sans cane.
I have been doing a lot of yard work; thank goodness our yard is a manageable size. The tulips are finished blooming and the bleeding hearts are now in bloom. The climbing roses have buds. Mowing the lawn hasn't been bad at all. I have had to remind Doug that he can't do yard work for at least another couple of months. As he feels better he wants to be doing things but runs out of energy quickly. He putters a bit and helped me hang some decorative birdhouses on the fence today.

Life is good, praise the Lord!

Love to all.

Day + 55 -- Look ma, no cane!

We have been home two weeks as of today. I think Doug has made amazing progress, especially over the last few days. His appetite is approaching normal. A couple of days ago he said that pizza sounded good, so I made homemade pizza and he ate two pieces.

He is still anemic, gets cold and bundles up, wears a hat inside, but that will pass. We have been extending the distance we go on outside walks. He is going up to five blocks now, with a rest or two. Three days ago Doug started walking in the house without his cane, and today he went outside without it. His strength and balance are beginning to come back. The walker is in storage in the garage.

He has his sense of humor back! I love to hear him laugh and make jokes.

We went to the new cardiologist in Salida yesterday. He said that Doug's heart is sounding okay and to keep up with the heart meds. Doug's blood pressure is low, but as long as he is not dizzy we should not worry. We will go back for a repeat echocardiogram in August.

We went to Salida again today - this time to see the new oncologist. He did blood work and will monitor Doug between our visits to the transplant physician in Denver. Doug will resume his Zometa infusions every month; that is the biophosphanate which builds and strengthens bone. We are very glad to have doctors in Salida, which is only 30 minutes from Buena Vista. Beats going to Denver all the time. We also have our primary care nurse practitioner here in town; we go to her for any ordinary problems.

Doug's recovery seems nothing short of miraculous to me. I do sometimes have "flashbacks" when I remember some of the horrible things that happened, but those will get fewer and farther between.

Those of you who are praying for a complete recovery -- your prayers are working!

Many thanks and love to all.

Day + 46 -- content at home

Doug continues to make slow but steady progress. He is very content to stay home and rest. Today he went with me in the car when I ran a few errands. We are both adjusting to our "new normal". When I am outside, I change shoes before coming in the house, rinse the dishes in bleach water (since we don't have a dishwasher), keep the dogs away from Doug and of course we both wash our hands a lot. I have to avoid crowds and am not supposed to let people give me hugs. That one is hard.
I did go to church yesterday and it was great to see so many people who have constantly prayed for us.

Doug still gets tired very easily and I think that will continue for quite a while. He also has a hard time getting warm enough. He sits in his recliner with a blanket, wears a warm hat and has the heat on. Luckily at night we have an electric blanket with dual controls! The transplant team would prefer recently transplanted patients to sleep in a separate room and have their own bathroom. Not an option in our small house, so I just try to keep things as clean as possible.

Life is good.

Love to all.

Day + 42 -- we are home!

Buena Vista

We got home yesterday, tired but so glad to be home. Spring flowers are starting to bloom in the yard. I am glad we are getting home in the springtime. The picture is of Doug sitting on our patio.

Doug has been eating fairly well - I think the Marinol appetite stimulator pill is working. Doug is trying to wean off it, but I think he needs it for a while yet. He's also drinking Ensure between meals. Good thing he likes to wear suspenders - he needs them now to hold up his pants! I had to put a pillow on his kitchen chair since he has such a skinny butt. Since I have an ample supply of butt padding, wish I could transfer some to him.

We have taken short walks outside while the weather is nice. Yesterday he walked half a block and today he went a whole block, using the cane. I take the wheelchair and he walks as far as he can, then sits in the chair and I push him home. He is gaining a lot of strength since he has been eating better.

We seem to have accumulated a lot of stuff while in Denver - I still have to get it all put away. Seems there has been so much to get done. I feel kind of strange - in one respect it feels like we have been gone such a long time, and in another way it feels like I just woke up from a bad dream. Last night I couldn't remember how to work the TV remote, or where I had some things in the kitchen. Homecoming is wonderful but also a bit stressful, as we need to adjust to a new household routine.

Today I picked up our mail - a whole tub full. The hospital bills are starting to come in; we need to really stay organized with that. I also went to the kennel in Salida to pick up the dogs. The people at the kennel are lovely. They gave us a very nice and much appreciated discount on price given our circumstances and length of stay, and they took wonderful care of the dogs. Piper and Chester look great. They were happy to see me but not stressed. Doug can't have the dogs on his lap for a couple of months, and now the dogs are not allowed up on the bed. They'll adapt to the new rules of the house.

We were at the hotel in Denver for 56 days, the dogs were at the kennel for 57 days, and Doug was in the hospital for 31 days. That's a long time but I know some others are hospitalized longer.

A week ago, when Doug was at Spalding Rehab, the therapist told me that I would need to stay with Doug 24/7, since he was so weak, and with dizzy spells. But now he is so much stronger, and has his brain back in operation, so he is being cautious. I have had several people offer to come and stay with Doug so I can get out of the house, but so far on my short errands he has been fine alone.

We have much to be thankful for.

Love to all.

Day 40 -- exit interview, green light to go home!

Staybridge hotel

Today Doug had a repeat echocardiogram study of his heart. The cardiologist called us later to say that Doug's heart "is functioning normally" and to stay on the heart meds. Wow - that is great news. The doc said that when this kind of virus infects the heart, there are two ways it goes: 1, the patient gets sicker and needs a heart transplant, 2, the patient gets better and eventually recovers completely. We are so very thankful that Doug's heart is okay!! Praise the Lord.

We also had the "Exit interview" for the transplant program. The main purpose is to remind us of all the restrictions and safety measures we need to take. Doug needs to avoid crowds and be cautious of how he eats for at least 90 days post transplant. No salad bars, delicatessens, buffets or potlucks, etc. There are other restrictions -- too numerous to mention them all.
His immune system won't be normal for one year. No yard work for six months -- this is mainly to avoid spores that can cause pneumonia. At the one year mark, the doc will do titers of the blood to see what immunizations Doug will need.

He needs blood work done every two weeks but we can do that at the clinic in Buena Vista. We will need to travel to Denver for follow-ups with the transplant team at the 3 month (bone marrow biopsy to be done then), 6 month points and then yearly. But Dr. Matous has arranged for Doug's monthly oncology visits to be done nearby in Salida -- that will be very helpful.

We are optimistic that Doug will go into a remission and have good quality of life without chemo. In our copies of the consent form it says "In general, the risk of myeloma coming back after autologous transplants is more than 90%." So the question is when -- I am thinking years. And really, none of us has any guarantee of how long we will live. If and when the myeloma comes back, there will be treatment available. Until then, we will live life, hopefully with a new appreciation.

We have been in Denver for 56 days and Doug was in the hospital for 31 days.
I think we are going to be traveling a smoother road on the next part of this myeloma journey.

Tomorrow our friends Cathy and Jim are coming to help us schlep all our stuff and drive us home!

Love to all.

Day + 39 -- still good

Staybridge hotel

This morning when Doug woke up he said "I'm hungry." Those are beautiful words to hear!

We also woke up to a beautiful snowfall. Snow is so pretty when we don't have to go out.

I was talking to a woman in the laundry room this morning. Her husband also had a stem cell transplant, with complications. His throat swelled and he had to have an emergency tracheostomy, but he is doing okay now. These transplants are dreadful, but when a transplant is the best chance of getting to a remission, it doesn't seem like much of a choice. And of course one doesn't think of such horrible complications ahead of time.

Tomorrow we have two outpatient appointments -- with the cardiologist and the transplant physician. Maybe they can cut back on some of the meds that Doug is taking.

"God allows us to experience the low points of life in order to teach us lessons that we could learn in no other way." C.S. Lewis

What are the lessons we are learning? I don't think I know them all yet, but one of the things I have learned is that God is good, and he does answer prayers. And that when I think I can't go on, if I pray I will get the strength.

Love to all and thanks for the prayers that got us to this point!