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.

Day + 34 -- the ticket out

Yesterday I was feeling low. Today I am much more hopeful. A friend told me that I must be a strong woman. Yes, I am, but the strength is not mine. Prayer and trust in God is what is keeping me going. I do have weak moments - I am human. But the bible verse that I put in the blog recently keeps coming back to me:
"Trust in the Lord with your whole heart. Do not depend on your own understanding. Seek his will in all you do, and he will direct your path."

So after prayer, I came to the conclusion that Doug needs to take more responsibility for his health. This morning I told him that his ticket out of the hospital is to drink six Ensures a day. All of his medical problems now are directly attributable to dehydration and malnutrition. Two days ago he said he couldn't drink more than three a day. Today he looked at me and said "Okay". So we have a plan to get him home (or at least to the hotel). He has not been thinking clearly and I know this will be difficult for him, but I think he is starting to understand what he needs to do. I had to leave the hospital a bit early to pick up something at the home health store before it closed -- by the time I left Doug had had four Ensures, more than ever before. He still is trying to eat as much as he can at mealtimes.

Doug is working incredibly hard with the therapists. They are very good at what they do; they are challenging Doug to do more and also encouraging him and giving him rest breaks when necessary.
His blood pressure is still low but was stable today. The therapists are cautious but still are having him walk. I follow behind with a wheelchair so that he can sit if he gets dizzy, but he hasn't needed to. The PA ordered another liter of fluid to be given tonight to counter the dehydration, and Doug is also drinking more. The therapists and I have discussed what kind of aids we'll need at home, such as a bath bench for the shower, a cane, and possibly a walker. No certain date for release, but I feel we are getting closer.

"God doesn't promise security FROM life's storms but security IN life's storms."

Love to all.

Day + 33 -- orthostatic hypotension

Spaulding Rehab

The appetite stimulator drug that Doug has been on is not working, so now he is on a different one -- Marinol. It is a pill, and the active ingredient is a synthetic form of THC. Hope it works! He lost another pound and now weighs 155.

Doug did great with physical therapy today -- he walked with the cane on a long ramp and longer than he has walked before. He did the arm exercises with OT.

In the early afternoon, Doug got dizzy while standing up after doing some exercises. The OT gal had him sit on the bed and she took his blood pressure -- it was way low. Sitting the BP was 91/65, standing 69/48, lying in bed 90/60. This is called "orthostatic hypotension": excessive decrease in blood pressure when a person stands up, resulting in reduced blood flow to brain and dizzyness or fainting. Some of the risk factors are dehydration, meds, prolonged bed rest, and anemia; Doug has all of those.
It is worrying to me that his pressure was low even lying down. The nurse checked it several times -- later it changed to 104/65 in bed and 75/52 when standing.
Doug is already wearing compression stockings. The PA ordered a liter of fluid to be given via his Hickman chest catheter, and one of his drugs has been lowered in dose. He was told to remain lying down for the rest of the day, and he is supposed to wear a velcro 'girdle' when up.

Doug's Hickman catheter was scheduled to be removed tomorrow; now it looks like that might not happen. He was really looking forward to getting rid of it.

According to the heart doc and the occupational and physical therapists, Doug could be discharged at the end of the week. However, the malnutrition/weight loss will probably keep him hospitalized longer. I can't bring him home when he is losing so much weight.

Both of us are getting dispirited -- we sure didn't bargain for all this to happen. I just pray for God to keep me strong (and for Doug's anti-depressant to work!). We want to go home; we've been in Denver since March 4, and our two little dogs have been at the boarding kennel.

Day + 32 -- from walker to cane

Spaulding Rehab

Doug is making very good progress with both occupational therapy and physical therapy. With OT he did arm exercises and a load of laundry! OT does mainly upper body strength and is concerned with any activity the patient might need to do at home, from personal hygiene to chores. With PT Doug progressed from using a walker to a cane! And he worked on climbing stairs. He will use the cane only when with PT for now, since he just started. I am permitted to help him move around in his room but we use the walker.

His therapy sessions total three hours -- today was two hours in the morning (with breaks) and one hour in the afternoon. They really put him through his paces but that is why he is at Spaulding. Doug was very tired but he accomplished a lot.

The cardiologist stopped by and said that Doug's heart "sounds good". Very encouraging.

Eating is still a problem. Doug lost another pound since yesterday. His face is looking gaunt. The dietician came by and said that at mimimum he needs at least 3 Ensures a day plus a milkshake and whatever food he can eat. She started an official calorie count.
I cannot control the eating problem and have turned it over to God. I feel less stressed now.

"Trust in the Lord with all your heart; do not depend on your own understanding. Seek his will in all you do, and he will direct your path."
Proverbs 3:5-6

Love to all.

Day + 31 -- please eat

Spaulding Rehab

There were two good things that happened today. Doug is off the nasal oxygen during the day. He may need to use it at night since breathing is usually shallower during sleep. And I was allowed by the nurses today to escort Doug from the bed to bathroom and the chair. One small victory. They still need to be with him in the hall but that's okay with me.

Since today is Sunday there were no therapy sessions. The nurse did pre-clean the shower stall and I stood on the other side of the shower curtain while Doug showered. (At least one nurse is trusting that I can keep him safe.) And in the afternoon, his nurse went with him so he could walk around the unit, using the walker. I followed along - okay with me.

Doug still is not eating much at all. He does try, and I make sure he drinks at least three Ensures a day. Today he weighed 157 lbs -- a loss of 20 lbs since March 10. He cannot go on like this, and if he goes back to tube feeding he must go back to the regular hospital. He is depressed enough as it is. The docs are watching his albumin level. The appetite stimulant was started last Tuesday so I hope it will kick in - they said it might take a week (but doesn't work for everyone).

Please pray that Doug will be able to eat!

Love to all.

Day + 30 -- feeling sad

I didn't get to the hospital until late this morning; I stayed at the hotel to do our laundry. It felt good to sleep in a little.

When I got there, Doug said that OT had come and he did some arm exercises with light weights. He did not get a shower which surprised me. I will make sure he gets one tomorrow. None of the rooms have showers -- there are two shower rooms and a nurse or therapist must help patients. Makes me nervous to let Doug use a communal shower room but I discussed my concern with the transplant team and was asssured that Spalding understands transplant issues and cleans/disinfects the shower rooms well. I intend to check up on that.

Spalding is starting Doug from scratch, with their own rules. At the transplant unit of P/SL, I was allowed and encouraged to help Doug transfer from bed to chair and bathroom, once OT had supervised and saw that I knew how to help him safely. At Spalding, I am not allowed to help him with anything yet. Doug cannot get out of bed for any reason without calling for the nurse. And if he does get out of bed, the nurse said they will set the bed alarm which senses weight (or lack of it) and alarms will ring at the nurses station. I know they are putting safety first, but both Doug and I find this demoralizing. It feels very confining. Not much is going to happen on Sunday, but on Monday I hope they will agree to at least observe me and make a decision to let me help him to the bathroom.

In the afternoon Doug had a session with PT. He walked "around the square" using the walker and did well. Adam, the PT guy, had Doug do some leg exercises and climb the portable stairs, with a few rest breaks.

Doug is feeling sad and overwhelmed. He asked for "happy pills" and the PA prescribed an anti-depressant. I am glad he asked for something - he certainly has reason. I feel sad too. I am hoping that starting Monday, the increased activity and sense of achievement will help. Tomorrow, Sunday, might be a long day. We will just take it one step at a time.

Doug goes to Spalding

Today was an eventful day -- Doug got transferred to Spalding Rehab. This is the rehab facility that I mentioned yesterday. It is in the P/SL hospital building but on a different wing. Spalding is its own entity and rents space from the hospital. They have an excellent reputation for all kinds of intensive rehabilitation.

When Doug heard this morning that the docs had given approval for the move, and that Spaulding had accepted him, he got a boost. He took a shower and wanted his t-shirt and sweat pants instead of the hospital gown. Both Doug and I feel that he has gotten excellent care at P/SL, but he really needed a change of enviroment. This will be good for him not only physically but also mentally/emotionally I think.

He got transferred by 3:30 in the afternoon. After lots of paperwork with the nurse and a new armband, we met one of the three PAs (physican assistants). There is also an M.D. who is a rehab specialist. Doug's transplant oncologist and cardiologist can follow him there but probably won't see him every day. Spaulding had all of Doug's medical records sent over, but the PA also asked him many questions. He did a physical assessment, gave us some explanations, then introduced us to one of the occupational therapists. The OT gal did her own assessment and then turned Doug over to the physical therapist. The PT guy did another assessment and said that Doug has "good strength" -- he needs to work on endurance and balance among other things. He had Doug walk around the unit so he could see how well Doug uses the walker.

Doug knows he will have to work hard but I think he is psyched about this. He can now see the light at the end of the tunnel.

Denver has had a lot of snow today. The drive back to the hotel was beautiful, especially the snow covered trees.

I am so happy and thankful for the move to Spalding -- with hard work I think Doug will really make good progress at getting closer to going home. Praise God.

Love and thanks for the prayers!

Day + 28 -- a better day

Today was a pretty nice day with no drama. Doug is trying with the eating - still not enough, but the dietician said she can see an upward trend with the calorie count.

The oncology massage therapist stopped by - Doug was sleeping so she gave me a neck and shoulder massage - so relaxing. She came back later when Doug was awake and gave him a back massage. He was lying on his side in bed with pillows to make him comfortable - after 20 minutes of massage and Reiki, he was so relaxed that he fell asleep again. I am so glad that this hospital is progressive enough to offer specially trained massage therapists.

Doug did his arm exercises with the occupational therapist, and later did leg exercises and walked with the physical therapist. He walked much farther than the day before. Go Dougie!

Gail, my sister-in-law, said she thinks the bald and beardless Doug looks like Bruce Willis. I think he liked that.

There is a possibility that Doug might be transferred to a different wing of the hospital for an intensive rehab program. The biggest hurdle has been jumped -- our insurance has given approval. Several more things have to happen: he has to be declared medically stable by both oncology and cardiology. Doug would have to come off the heart monitor since the rehab facility is not set up for that. Today his liver function test was a bit off, so that would have to come down to an acceptable level. And finally, the rehab program needs to come and 'interview' Doug -- they want to make sure that he is willing and able to do the intensive work. We'll find out more tomorrow.

"God has not given us a spirit of fearfulness, but one of power, love, and sound judgment."
2 Timothy 1:7

Love to all.

Day + 27 -- ups and downs

Doug did okay in the morning, ate a yogurt for breakfast, then took a shower. OT came and since he was tired from the shower, she just did arm exercises with Doug in bed.

Another drug has been started for Doug's heart -- an ACE inhibitor. The afternoon did not go as well. Doug only sat in the chair for 30 minutes and said he needed to go back to bed. He is supposed to sit in the chair for an hour in the morning and an hour in the afternoon. He really felt "crappy" and didn't eat much. He had a bout of dry heaves and had a fever again, 'only' 100 this time. Some of his skin is starting to peel; I think that's from the chemo.

The cardiologist didn't come until 6 pm. He told us that adding the new drug, plus increasing the dose of another drug, could be making Doug feel bad, but just for a day or two. He is going to order a repeat echocardiogram; if the ventricle is still impaired (they go by the shape), he might increase doses. He'd like to get Doug's heart rate to go slower. Overall he thinks Doug is doing okay.

My emotions go up and down according to how Doug is doing. I know mentally that Doug is doing well considering what happened to him, but it can be emotionally draining to see him so miserable and unable to eat. He does try to keep his attitude up as much as possible, so it could be worse. He is alive and getting better, so I need to focus on the positive.
Wish I could click my heels and get us home.

Love to all.

Day + 26 -- Doug works hard

Last night I prayed to God that he send me refreshing sleep -- and I got a full 8 hours sleep. Thank you Lord.

I was very glad to see that we had Susan, one of our favorite nurses today. Yesterday's nurse was rather passive. Susan is good at 'tough love' and gives Doug lots of encouragement. Doug ate very little for breakfast this morning - quite discouraging to me.

The cardiologist came in and said that Doug's heart is in normal rythym today, and he is tolerating the beta-blocker drug okay. The cardiac enzymes are down to .2 -- very good! The enzyme is Triponen and results from heart cells dying, so means heart damage; it stayed elevated for a long time. He told Doug to eat more!

The infectious disease doc said that they have been doing titers of Doug's blood -- and found a virus called HHV6 that might have caused the heart damage. There is a new drug, Valcyte, that he has ordered just in case the virus is still active. He said it might not help but "can't hurt".

The occupational therapist came to assist Doug to shower, so it could be documented that he is able to shower independently (or not). She got two oxygen tube extensions to reach to the shower. She instructed him to use the commode (without pan) as a shower chair since it is higher and has arms. He had the shower curtain pulled so had privacy but she was right outside and talking to him to make sure he was doing okay, and using the grab bars to stand. Doug did very well! He also learned how to get on/off the regular porcelain potty safely -- another new skill. So the commode will be used only in the shower. Needless to say, he was clean but exhausted.

I am so glad that our primary oncologist Dr Matous is back. I told him that Doug was doing well but eating "sucks". He ordered a dietician consult, so now Doug has been started on an appetite stimulant (might work, might not) and now they are doing a calorie count on what he eats. Doug is having a hard time trying to understand what happened to him to make him so fatigued.
Dr. Matous told Doug: "On a scale of 1 to 10, what happened to you is an 11." He also told Doug that eating is not an option -- "FORCE yourself to eat; consider it your JOB, or you will be in the hospital for a much longer time." I think Doug is finally comprehending (through his brain fog) how important eating is. He is really working to get some food down even though it is a big chore.

Doug sat up in the recliner several times today -- he is getting pretty good at transferring using the walker-- I am just watching to make sure he does it safely. Each time is good exercise. The physical therapist came right after he got back to bed, so he was already tired. She did a full range of leg exercises with him, and then walked him in the hall. I told Doug that I am very proud of him for working so hard.

"Keep me safe, O God, for I have come to you for refuge." Psalm 16:1

Love to all.

Day + 25 -- we are both tired

Both Doug and I are tired. Of course I cannot compare his extreme fatigue to my tiredness.

He was tired and groggy this morning, and remained fatigued all day. His food intake today is less than yesterday; I am trying to encourage without getting in his face -- sometimes I think he does better if I just leave him alone. Its a hard line to walk.

Our primary oncologist, Dr Matous, came back today after being gone for two weeks. He said that he has never seen anything like this happen to a transplant patient. He told Doug that he expects a full recovery. He ordered the urinary catheter removed -- one more tube gone!

The cardiologist started Doug on a beta-blocker drug to help his heart.

Occupational therapy came this morning and worked on transferring in and out of bed, and arm exercises. Physical therapy came in the afternoon and worked on leg exercises and more walking. Between therapies, different doctors coming in, nurses doing their thing, getting out of bed, etc, Doug has reason to be tired. He is not sleeping well at night and his naps during the day are usually interrupted. One of the reasons he isn't eating well is probably lack of energy from doing all that stuff. It is all important, but so is rest! Our son Kelly and d-i-l Jamee came to see Doug briefly today -- he mostly laid in bed with his eyes closed and just listened to them.

I know he is making really good progress, but today was just hard.

love to all!

Day + 24 -- Joyous Easter

This morning Doug seemed weaker than yesterday, and not as coordinated hand to mouth. I had been warned by the nurses to expect fluctuation day to day, and even from morning to afternoon; I was concerned but not overly worried. He rallied big time in the afternoon!

He learned how to use the walker to transfer from the bed to a nearby recliner, sat up for an hour, and also transferred to a commode. No more bedpans! After Doug got back to bed and settled down for a nap, I went to lunch. He never got his nap; after I left, the physical therapist came and assisted Doug in walking 70 feet using the walker. First time he has walked since his heart-stopping episodes last Saturday. The nurse told me that Doug did very well. He sat in the recliner for another hour later for supper. Each time he moves around is good exercise.

The oncologist came and decided to pull the feeding tube -- he told Doug that if he does not eat enough, the tube goes back in. Doug has to eat at least three small meals plus three bottles of Ensure between meals. He is eating by sheer willpower. Lunch was five bites of mashed potatoes but for supper he ate pureed chicken noodle soup and pureed peaches. Takes too much of his energy to chew so for another day or so I think pureed is the way to go. His taste buds are fried from the chemo so nothing tastes good and he has dry mouth. Who knew eating could be such a challenge.

The stem cells have engrafted and Doug's blood counts are good, so from a transplant standpoint he doesn't have to be in the hospital now. I'm not sure when the cardiologist will think he is ready for discharge; soon I hope. His general condition has to improve a whole lot, but it will.

Doug is doing his breathing exercises, eating, walking, spending more time out of bed, using the commode -- so many goals achieved today!

I hope you all had a Happy Easter. God is good.

Day + 23 -- transferred out of ICU

When I walked into Doug's room this morning, he was sitting up in bed, looked at me and said "hello dear". He was not confused! His voice is almost normal, recovering from the raspy whisper caused by having the ventilator tube down his throat. He was holding a cup of water in his hand and managed to drink and then set it down. Might not sound like much, but these are motor skills he had temporarily lost. And he sat up in a recliner for over an hour; it is very good for him to get out of bed as much as possible.

The ICU doc came in to see Doug and said that Doug was ready to be transferred out! We had to wait until afternoon for a room that could accomodate a heart monitor, but now Doug is back on the 9th floor. It was kind of strange to be back there -- I could almost imagine that the week in ICU never happened. The nurses in ICU were great but its not a place you'd want to spend a lot of time.

The cardiologist came by and said that every day Doug looks better from a cardiac viewpoint. He's come a long way from being in heart failure a week ago.

Doug is still very weak but I think he will gain strength every day. Since today was Saturday, the physical therapist did not come but I think/hope they will tomorrow. Doug is very motivated to try to walk the few steps to the bathroom.
Another big hurdle is to get him to eat and get off the tube feeding.

So it was a very good day, and I am feeling a big sense of relief. I am so thankful that both Doug and I have a faith that has sustained us in this difficult time. Thank you all for your prayers!

"Do not be afraid, for I am with you. Do not be dismayed, for I am your God. I will strengthen you. I will help you. I will uphold you with my victorious right hand."
Isaiah 41:10

Day + 22 -- a rocky start, then good news

When I got to the ICU this morning, Doug was more "out of it" than usual. He was physically active, moving around in bed, but really jabbering nonsense. His eyes were half open. I asked him to look at me and he did but wasn't very focused. I said "Who am I?" He answered "Dolly" (his mother) -- I asked him to try again. This time he said "Jeff" (his brother). This was the first time he did not know me and I was very upset. I sat in my chair with a kleenex and had a little pity party. About 30 minutes later one of the docs came in and asked why I was crying. The doc then woke Doug up and said "who is that in the corner?" Doug said "my wife". And he knew my name -- whew. He was out of it most of the morning. Later the social worker explained to me "ICU delirium" -- patients in ICU become very disoriented and lose track of reality -- it happens commonly and can get worse the longer they stay in the unit. Now I understand it will get better, and I hope he can be transferred to another floor fairly soon.

We had several pieces of good news today! There have been no fevers and no antibiotics for two days. The cardiologist told me that a test he ordered, that is indicative of heart failure, came back normal today. He had ordered the same test when Doug was admitted to the ICU and that time it came back very elevated -- but because Doug was so recently post transplant, he suspected that might be influencing the numbers, and that was true. So another whew.

The tube feeding seems to be giving Doug some energy at last -- he did an awesome job for the physical therapist, showing much stronger arms and legs, and he might stand tomorrow. The downside of his being stronger is that in his confused state he tries to climb out of bed. Fortunately he can't manage to get the sides of the bed down. Yet. His day nurse said that if necessary the night nurse can call for someone to watch him; it is illegal to use restraints on patients in this modern age.

Our son Kelly had today off so was able to spend quite a bit of time with me and helping with Doug, so that was great. Doug's brother Jeff also comes when he can. And a few days ago friends from our church in Buena Vista came to see me and pray for Doug; it was really wonderful to see folks from home. Our daughter-in-law Jamee is doing laundry for me which is a big help and much appreciated.

The best news of the day -- the oncologist said that he talked to the pathologist and had preliminary results from the heart biopsy -- no amyloid! This is very good; amyloid is a nasty protein fiber that infiltrates organs and disrupts function -- and that would have meant more problems down the line. So the docs feel that what Doug has is a virus that settled in his heart when he had no immunity, even though he was on preventative meds. Since Doug's heart is gradually improving, the virus must be self-limiting -- a very good thing. I don't know yet if there will be a specific treatment or just supporting his heart and letting it heal with time. The biopsy still has to go under the electron microscope for final opinion.

The oncologist also said that the blood tests are showing a good reduction in the myeloma numbers -- so it looks like the transplant is successful.

So after a rocky start it turned out to be a very good day. This is the first time in quite a while that I can breathe a sigh of relief. PRAISE GOD!

Day + 21 -- Heart biopsy, V-Fib

This was Doug's 5th day in the ICU. Two of the docs told me that his overall condition is better!
His kidney values are looking okay now. The liver still has a way to go but is improving. He still is very sleepy but wakes up when talked to; still keeping his eyes closed most of the time. He answers questions appropriately except when he is having a dream. His brain is intact but seems to be 'resting'. Quite understandable under the circumstances I think.

His pacemaker is working but his heart rate this morning was erratic and sometimes much higher than the pacer rate; it is set for 70 but he was going up to 150 at times. One of the cardiologists said that the higher rate means that Doug is overdriving the pacer. He wasn't worried but they did an EKG just to be on the safe side. This heart rate is much better than what he had over the weekend.

Today was the heart biopsy.
"A heart biopsy is a procedure that involves using a bioptome (a small catheter with a grasping device on the end) to obtain a small piece of heart muscle tissue that is sent to a laboratory for analysis. The doctor uses a local anesthetic to numb an area of the neck. A plastic introducer sheath (a short, hollow tube through which the catheter is placed) is inserted through a small incision and into a blood vessel in the neck. A bioptome is inserted through the sheath and threaded to the right ventricle. X-rays, called fluoroscopy, are used to position the bioptome properly. The bioptome is used to obtain samples of the heart muscle. Each sample is about the size of the head (top) of a pin."

During the heart biopsy, Doug went into V-Fib (ventricular fibrillation) which caused some excitement! The cardiologist had to shock him back into rhythm, but only once. Like in the TV shows, when someone grabs the paddles and yells "Clear!" Hearing that made me kinda weak in the knees, but at least he was in the cardiac cath lab where they have all the equipment - and people who know how to use it.

"Ventricular fibrillation (V-fib) is a life-threatening type of abnormal heart rhythm (arrhythmia) in which the heart “quivers” rather than beats. V-fib is a cardiac emergency that requires a rapid response. People suffering from V-fib need to be treated with a defibrillator to jolt the heart back into a normal rhythm. If treatment is not given in time, the heart will completely stop (cardiac arrest) and sudden cardiac death will result."

After he was settled back in the ICU things were back to 'normal' - but nothing about the last two weeks is normal! The cardiologist did put him temporarily on a drug to help control the heart rate; can't leave him on it long term because it can cause liver damage as a side effect. Everything is a balancing act.

Before I left tonight the nurses gave Doug a bed bath and back rub; when I left he was sleeping.
This is like a bad soap opera - just wish my husband wasn't the feature player.

Day + 20 -- very weak, tube feeding

I will try to make this short - had to go grocery shopping after the hospital and then did research so need to sleep soon.

The docs think that Doug is recovering. Slowly, very slowly. His heart is being supported by drugs to keep his blood pressure up, and by the pacemaker. The nurses are trying to slowly wean Doug off the BP meds as tolerated. Still trying to make a definitive diagnosis. Since he is recovering, making a diagnosis most likely won't affect treatment, but it is important to know for future management. Tomorrow the cardiac specialist is going to do a heart biopsy. We won't get results until probably Monday.

Doug was very sleepy today. He only wanted tiny sips of water and even then had trouble swallowing. It has been a long time since he has eaten. The docs were hoping that he would start to take food by mouth, but since that isn't happening, Doug got a nasal-gastric tube today for liquid feeding. The NG tube is small diameter and goes in through his nose into his stomach. The placement was checked by X-ray and then a special concentrated formula was started by a very slow drip. The amount can be increased as his stomach tolerates it. I am glad they started the tube feeding -- hopefully the nutrition will help him gain strength and heal.

Physical Therapy came this afternoon. The PT gal got Doug to sit on the edge of the bed with help (and a nurse behind him) for a few minutes but he was too weak to stand. Someone from PT will come every day.

The diuretics are reducing the fluid retention -- Doug's face looks much better. I hope he gets some good rest tonight.

God is giving us strength to get through each day.

Day + 19 -- unusual heart problem, off ventilator

Doug is still having some fevers, most likely from his heart problems. His blood counts have come up nicely from the transplant -- his white count is now normal.
Doug was taken off the ventilator at noon, and it went well. He was pretty drowsy but awake enough to cough on command. He is breathing on his own without trouble. His throat is dry and sore and he is talking in a whisper. He is very weak, maybe from the heart trouble and also from laying flat for four days on the ventilator.

Doug had a repeat echocardiogram (ultrasound study of the heart) at bedside today. The cardiologist says this is an unusual situation: The echo shows that some parts of the heart that were bad are now slightly better, but other parts that were normal are now worsening. It keeps changing, which is a mystery. The Takotsubu syndrome that was previously diagnosed does not account for this. He said that Doug's heart function is worse overall. The cardiologist has not ruled out a heart biopsy. Before the transplant ever started, Doug had a complete echocardiogram to rule out heart problems - it showed a normal heart. The transplant docs say they have never, in thousands of SCT, seen the chemo affect a heart this way, so that pretty much rules out chemo damage.
It could be a viral infection of the heart, but this is not following any usual pattern. Hope we get more information tomorrow!
Doug sat up in a recliner for one hour today and ate two bites of jello. Progress in tiny steps. Two nurses had to help him back into bed. He is so weak and so tired of all this, but he had a big day today. We both want to go home.

I read this verse to Doug: "Come to me, all of you who are weary and carry heavy burdens, and I will give you rest." Matt 11:28

love to all and keep praying!

Day + 18 -- more heart problems, pacemaker

Doug is still on the ventilator, deeply sedated and not aware of anything. It is hard to see him like that, hooked up to all the machines. His body is bloated with fluids, but he does have some urine output. I stroke his hands, feet and forehead and talk to him on the chance that he is aware on some level.

The cardiologist decided today to put in a permanent pacemaker. They had turned down the temporary one but Doug's heart could not sustain a rythym, so it appears he will need a permanent one. The plan was to then get him off the ventilator.

The pacemaker procedure took about two hours, longer than they had told me. When the cardiac doc came out to talk to me he said that he had found something very unusual. The normal electrocardiac voltage for the right atrium should be 3 to 5 mv. Doug's was only .2 and they couldn't get it above that. Doug's upper chamber is "severely diseased". The cardiac doc is very experienced and he said he doesn't know why that is. He is going to call in some other experts to get more ideas. He shared with me what he doesn't know, and I appreciate his honesty. He doesn't know yet if it is permanent or temporary; if it is caused by a virus, or some allergy or toxicity (chemo anyone?) or it could be cardiac amyloidosis which is not good. I'm not going into detail on that until we see what happens. A biopsy of the heart muscle is a possibility.

Meanwhile the permanent pacemaker has only one wire, into the lower chamber instead of two. This is the way all the old original pacemakers were - the doc said it should work well, except Doug might be short of breath on exertion.

The plan is to extubate (take off the ventilator) Doug in the morning. I want to be there for that since they stop the sedation first and I think it could be a scary uncomfortable feeling to wake up with that tube in his throat and not be able to speak. Hopefully it will be a quick procedure.

For now there are more questions than answers. We can only take it one day at a time.

Day + 17 -- heart troubles

Second day in the ICU. Doug's brain looks okay, and the echocardiogram study of his heart shows no evidence of a heart attack, but his cardiac enzymes are elevated, which means some kind of heart problem. The monitors were showing a "complete electrical block" meaning the electrical conduction between the chambers of the heart were not good. So the cardiologist wanted to take Doug to the cardiac cath lab for further exam and possible intervention, such as a stent if they discovered a physical blockage, or maybe a permanent pacemaker. The complication -- to do a cardiac catheterization, they give drugs that lower the platelet count, and Doug's platelets were already low from the transplant. After conferring between the heart doc and the transplant doc, it was decided they couldn't wait a week for the platelets to rise. So they decided to do the cath now, and transfuse more platelets into Doug, and hope for no bleeding.

After the cardiac cath, the cardiologist came out to talk to me. He said they found a rare condition called "Takotsubo Syndrome", also known as “stress cardiomyopathy” or “broken-heart syndrome”, that appears under circumstances of exceptional and extreme stress. The heart muscle receives a huge jolt of adrenaline, causing a shock. The heart does not beat normally.

Usually there is some form of extreme, exceptional and prolonged mental stress,... with no good way out, no relief and often feeling deep resentment (such as the loss of a dear one...)
but in a minority of patients the stress is physical (such as massive trauma, surgery or severe pain, or other type of stress.

I'd say Doug has been under both severe emotional and physical stress. We all thought he was handling it so well, but I guess not. Just my opinion but I think he might need some sort of stress reduction measures. I am going to check tomorrow to see if he can have some massage and maybe Reiki healing touch.

The good news: this condition is reversible -- the heart can heal. No surgery needed, but time to rest and recover. No way to tell how much time, but it could start healing quickly. In the ICU they will test to see how well the heart is doing by gradually lowering the amount of drugs that keep his blood pressure up. If it falls too low, they can increase the drugs. In the meantime, Doug will stay on the temporary pacemaker and the ventilator. As long as he is on the vent, he will be deeply sedated.

I came back to the hotel earlier this afternoon and took a three hour nap - I needed that.
Yesterday I surrendered to God and told him he is in charge.

Love to all.

Day + 16 -- on ventilator

Doug is on a ventilator now.

When I got there this am, he was drinking his breakfast of Ensure. He had no fevers during the night. We went for a short walk. When we got back to his room he was extremely fatigued but that is nothing new. He said he wanted a shower but had to rest first. While he was resting, one of the docs came in to check on him. He was answering her questions but then suddenly he had some kind of eipsode -- his eyes got huge, his face got all contorted and red, and he lost consciousness for about 10 or 15 seconds. A few minutes later he had another one. I was calling them seizures. By then several nurses had come in and the doc had decided to move Doug to ICU where he could be more closely monitored. Then he had two more episodes and they decided to do an emergency brain CT scan.

From CT they took him directly to the ICU. I was shown to the waiting room and told someone would come out and see me shortly. After waiting 30 minutes I went into the ICU dept and could see down the hall -- a lot of people going into a room and some standing outside looking in. One of Doug's doctors saw me standing there -- she came over and said the brain scan didn't show anything and that they wanted to take Doug to the cardiac cath lab to look at his heart.

A few minutes later the cardiologist came to talk to me -- he said that when they hooked Doug up to the heart monitor, it showed that the heart was having periods when it stopped beating for several seconds. That caused the episodes of blacking out. So they put in a temporary pacemaker to stimulate the heart to beat. They also did a repeat echocardiogram that showed no evidence of any damage to the heart.

And they deeply sedated him and put him on a ventilator so he can get enough oxygen. I finally got to see him. Not a good sight, all hooked up to wires, hoses, pumps, etc. He wasn't able to respond to me but I talked to him anyway.

So his heart seems okay, his brain seems okay, and the docs don't know what is happening. I hope to get some answers tomorrow. I stayed with Doug for a while but then came back to the hotel. I need to get some rest so I can cope tomorrow. I feel wooden, like I have no emotions. This does not seem real.

Day + 15 -- a much better day, no fevers!

Finally after ten straight days of troubling fevers, Doug went all day without high fevers! He looks so much better. His ANC is 2,550 so those stem cells are in production. Another MM patient put it like this:
"The new replacement cells are struggling to learn their jobs, pick up where the more experienced cells left off. Its like rebuilding the basketball team during an off year."

The infection specialist doc came to see Doug and said that since the fevers seem to be gone, he is stopping the extra IV antibiotics. Doug will still be on the prophylactic (preventative) antibiotic pills that all transplant patients take. As much as possible, the IV meds are now being given in pill form, so soon Doug won't spend almost the whole day hooked up to the IV pump. He's still using oxygen at night temporarily.

Doug's jobs now are:

• to eat solid food gradually
• walk more
• do exercises
• breathe deeply and use his spirometer gadget
• spend more time out of bed and gain strength

I am coach for all these things -- it is a fine line between encouraging and nagging. I am trying to back off and let him do more by himself now. We have a chart on the wall for food intake and spirometer use, so Doug can look and see progress or lack of it.

This morning he had a whole can of Ensure for breakfast; that is good because Ensure has lots of electrolytes. For lunch he ordered potato soup, ate a few bites and vomited all of it up. Maybe it was too thick, with all his mucusitis in mouth and throat. Tomorrow we'll try pureed foods. He did have some jello in the afternoon and then another whole can of Ensure before I left. Everything is going to be baby steps but that's okay. He's walking in the hall morning and afternoon, and doing arm and leg exercises. Everything is a big effort for him, so I give him lots of "atta-boys".

Doug had his first two visitors today -- Wylee E. from our church in Buena Vista, and Jamee, our daughter in law. Jamee is going to do our laundry! She must be one of the marines who rushed in to help me.

I had a much better night's rest, and with the help of my little pills, I don't have that awful anxiety feeling. I know part of it is that Doug is feeling better. A friend gave me a saying that goes something like this: "If God leads us to it, he will help us through it". I believe that.

love to all and thanks for the prayers!

Day + 14 -- Caregiver crash, Doug stable

Doug now "looks good on paper" -- his counts are coming up and his ANC is now 1376. As far as the numbers go, he could be discharged by now, but he has to get in better physical condition before he can go back to outpatient status. He is still having fevers but they seem to gradually be lower temps. His chest CT came back -- no infection! He does have some lung changes and some fluid but that should improve as he is able to breath more deeply and get more active. Last night they had to up the oxygen to 3 liters but today he was able to take off the oxygen. He had another red blood transfusion last night -- that might give him a bit more energy since the red cells carry oxygen to the body. His electrolytes continue to be all screwed up and are being replaced by IV daily, but once he is able to take in some food -- I'd be happy with even more Ensure at this point -- that too should improve.

His kidney and liver values are stable and the docs are not worried about that.

I had a meltdown this morning -- tears, racing pulse, could hardly talk etc -- my first anxiety attack. Guess I've been going too long on little sleep and a lot of stress. I was a physical and emotional mess. I called one of the outpatient transplant social workers that we had met and within ten minutes she had sent the inpatient social worker to the hospital room. We went out into a quiet place and I vented and told him about how I just couldn't cope -- he said all that is normal for transplant caregivers. He recommended that I go on drugs temporarily - he said the majority of caregivers are on some kind of drug to help them. So I did call and got two prescriptions, one an anti-anxiety drug and one is an anti-depressant! Never thought I'd be doing that! I thought I was holding up okay but just reached the place where I could hardly function. And since I *must* be healthy and strong for Doug, I'll do whatever it takes.

I got lots of help today -- the social worker also called the psychologist, the chaplain (wonderful woman) and the massage therapist! The massage was great, and she did some Reiki on my shoulders too - first time for that kind of healing touch and it was very calming. And the social worker also arranged a meeting in Doug's room of our nurse, the doctor and nurse practitioner. This was so we could get a better understanding of what is happening with Doug. All these people are on the transplant team -- the social worker really called in the marines! The whole team is there to support us. They will not do a transplant unless each patient has a full time caregiver, so they know they need to support both patient and caregiver.

I had been trying to not let Doug know of my stress but for the last few days I would fall apart when I left the hospital. The team all said not to hide my feelings from him. So now he knows and it doesn't seem to upset him. He's on so many drugs he won't remember anyway!

Some things the doctor said: there is no "normal" with this disease or treatment - the course of recovery can be very different for each patient. Also don't look ahead more than 12 hours because things can change. Some patients have a very long slow recovery and some faster. He also said "there is nothing natural about what we did to you".

I have taken my 'happy pills' and hope for a good night's sleep. God is providing and watching out over us.

Day + 13 -- CT scan, more fever, worn out

I didn't post last night -- too tired --so just a quick update. Yesterday Doug's neutrophils (ANC) were up to 738, very good. The docs say that usually by the time the ANC is 500, fevers are gone and patients are off antibiotics. But Doug is still having persistent fevers and they can't figure out why, so are doing a CT scan of his chest. They are being proactive - if they find something then they can find a weapon to attack it, instead of letting it get worse.

I am concerned but trying not to be too anxious - the doc did tell us that a CT was a possibility a day or two ago, but they wanted to take a wait and see approach. Guess they are done waiting.

Meanwhile Doug is struggling to eat a few bites of solid food. Breakfast yesterday consisted of half a popsicle. He drank a milkshake in the afternoon. He is taking short walks and doing some bedside exercises. Everything is a huge effort but he is really trying. His body is worn out and with all the hospital routine he is not getting much rest.

I am getting worn out too, physically, can only sleep 4 hours even with a sleeping pill, and feel brain-dead at times. I'm leaving soon for the hospital - the nurses do shift-change reports now at the patient bedside so I can find out if anything happened during the night.

I do think that Doug's body is trying to heal but it might take a long time.