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!

Day + 38 -- nice quiet day at the hotel

We have had a very quiet day here at the hotel. No drama. We are enjoying a leisurely pace, eating whenever and whatever we want to, and not having naps interrupted. Doug is eating much better now -- small meals at frequent intervals. We have been doing the arm exercises, and Doug walked the long hallway inside the hotel. Chilly rainy afternoon here in Denver so we did not get outside.

We do blood pressure checks twice a day and keep to a medication schedule.
If I don't blog tomorrow, it means there is not much to report. Boring is okay with us.

Life is good! We are appreciating every small moment.

Love to all.

Day + 37 -- out of the hospital!

Doug is "home" at the hotel now! This afternoon he has eaten a deviled egg, Ensure, and hot chocolate. Appetite is definitely picking up. Yea!
Doug is using the walker or cane and doing very well for short spurts.
I have to go to Walgreens to pick up the boatload of prescriptions he is on. He is being careful when getting up and moving around, so I feel safe leaving him for a little bit (but not too long). I am probably being overprotective; I think it will take me a while to get over that.

Later on today we will go walking in the hallway so he can go a longer distance. It is chilly and cloudy here, so we'll stay inside. Tomorow we will do the PT exercises and enjoy a nice quiet day!

Love to all!

Day + 36 -- a little appetite, gratitudes

For the first time in a week, Doug did not lose any weight! He is holding at 152 and hopefully that will go up soon. He seems to be getting a tiny bit of appetite back. One of our church pastors and his wife came today from BV -- it was great to see them and pray with them.

I left the hospital early today to get some shopping done while Doug is in a safe environment. Got some stuff for him, including a pair of 'skinny' jeans. I had to go to the home health store and there is a Sears right across the street. Since we have very few places to shop for clothes in Buena Vista, I went into the Sears and found a few things at 50% off for me. Fun!

We have things in place to leave tomorrow - Doug will have one more physical therapy session, and we need to review his medicines. I have been very impressed by the therapists at Spalding; we just found out today that Adam, one of the physical therapists, has his doctorate. Doug will resume his physical therapy in Buena Vista next week. Doug has been so fatigued that he can't see his progress -- but he has come a long way in a week. He can walk farther now, especially if he has rest breaks. We have rented a wheel chair for getting him to doctor visits; Doug will walk with the walker as far as he can go, then he can sit in the chair when he tires or gets dizzy and I will push him the rest of the way. That way I don't have to worry that he might fall.

Although this part of our myeloma journey has been very rough, there are people who are so much worse. I was thinking today of some of the things that we have to be grateful for:

• Both of us are retired, so we don't have to worry about going back to work.
• With the help of lots of prayer, I have been able to stay healthy during this stressful time.
• We have good health insurance. So many people don't.
• Doug has had very good medical care, with excellent and caring professionals.
• Even though his heart stopped and he had to be on life support for a while, Doug is expected to fully recover with time. Sometimes I marvel that he is even alive now.
• The transplant doc thinks that the transplant is a success; we'll know more after the next bone marrow biopsy in another two months.
• We have such good support from family and friends who have been praying for us and will be available to help us with whatever we need.
• God has been walking this journey with us and has kept us going in the tough times.

Love to all!

Day + 35 -- Discharge planning, Hickman out

Spalding Rehab

The doctors and therapists had their Thursday conference today -- and they decided that Doug can be discharged this Saturday! It hasn't really sunk in yet that he has only a day and a half left.
Today was very busy with Dr. visits, the usual therapy sessions, discharge planning. The therapists still have lots for Doug to do. Seems things are moving fast. Doug's case manager at Spalding is arranging physical therapy for him in Buena Vista.

I had planned to take Doug outside in a wheelchair, just the two of us to enjoy some sunshine this afternoon. But the nurse said "Interventional Radiology is coming to get you, to take out your Hickman (central venous line in the chest) catheter." It came out pretty easily - just some local anesthetic, cutting some tissue that had bonded to the catheter where it entered the chest, and a tug to get it out. That is the final medical gadget to be removed from his body, except for the pacemaker which will remain.

We will remain in Denver, at the hotel, for about a week, to finish up with the transplant team, and a repeat echocardiogram. Then we get to go home to Buena Vista. Our good friends Cathy and Jim Storey will come to help us pack up, drive us home, and help carry stuff in. I sure appreciate not having to drive the three hours home. I know we will have lots of support when we get home.

We are in a transitional phase now -- I need to back off and let Doug do more for himself. He has become very dependent on me. I have been doing so much for him, starting when he really couldn't do much of anything. It is a psychological as well as physical transition, for both of us. I need to watch him carefully but give him space. The therapists want me to stay with him 24/7 at first. I am a little frustrated with Doug - he has been refusing to wear his "leg squeezers" at night. I don't know the real name but they wrap around the lower legs and pulse to keep circulation going at night -- purpose is to prevent blood clots.

He is eating a little more, but will need to drink Ensure when he comes 'home' for a while yet. Hope he will! Today was the first day that he said something tasted good. Hopefully that will improve every day.

Love to all.