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.

Day + 12 -- a rollercoaster day

Wow -- today had its share of ups and downs. It started off really good; Doug told me that before I got there he had pancakes for breakfast! First solid food in days. And his neutrophil count is up to 588! His mouth sores are quite a bit better but still has a sore throat.

Doug got another transfusion of platelets last night. He had a temp of 102 late last night but by the time I got there this morning it was 99.4. He is still on oxygen.

The occupational therapist came in this morning and showed Doug how to do some exercises using a Theraband - a big rubber band. Some he can do in bed. She also showed him some lower extremity exercises to do standing up. With some encouragement he did those when he got up for a bathroom trip.

I went to a "Caregiver Support Group" this morning. There were five of us and a social worker. We all passed around the box of tissues. Everyone agreed that even though we were informed and had lots of educational material, we had no idea of the extent of the difficulty we would face. One lady said a doctor told her that a stem cell transplant is "the most complex medical procedure there is". I don't know if that is correct or not, but I know it is a brutal treatment; however we don't have a lot of options. What our doc told us in the beginning was that half of SCT patients have fevers, and one quarter of those who start out as outpatients like us end up being hospitalized. We both thought that since Doug started out in great physical shape that he would be one of the lucky ones, but not so.

The infectious disease specialist came to see Doug and his rash -- he said that if Doug is still having the fevers in another day or two, even with the improved blood counts, that a CT scan might be needed to try to find the reason.

Even though Doug is so very fatigued, he got up and sat in the chair for 30 minutes - that was a huge effort. And he even ate a few bites of chicken noodle soup!

The doctor of the day came to see Doug and he said that Doug's sodium level is low. That is a concern for the kidneys, and he ordered a urine test so he can compare the blood sodium against the sodium in the urine. If they can't figure out where the sodium is maybe leaking, they will call in a kidney specialist. This really worries me. We had a friend who had a really bad time with lots of complications in the hospital and it all started with low blood sodium.

Doug spiked a temp of 101.6 in the afternoon, so he got Tylenol. One hour later his temp had risen to 102.1, so the Tylenol didn't help. Not good at all. He got ice packs.
He was having what he calls "hallucinations" more often today -- he was saying some really weird things.

At 4:00 this afternoon he took a walk that was twice the distance he went yesterday! Very good effort - I was so proud of him.

I am very concerned because of the continuing fevers and now possible kidney problems. I hope that comes to nothing. You can see why I called it a rollercoaster day -- highs and lows.
Today was one of the days that I had to pray for help to drive home safely. I now keep a big box of Kleenex in the car.

Love to all, and keep praying.

Day +11 -- a rocky road but neutrophils rising!

Doug still feels really crummy but his neutrophil count today was 248! All his counts are still very very low and will be for quite some time, but the upward trend is exciting!

He is still having fevers but the high temp today was 101.3, so that is encouraging. He was off the oxygen for part of the day; he still needs it at intervals due to shallow breathing. The doc still heard the rattle in Doug's chest but isn't really worried about that; he expects it to correct itself once Doug is more active.

His electrolytes are all messed up and are being replaced every day. At one point today, I counted ten bags hanging on the IV poles -- two pumps and all three of his central line lumens were being used. It takes hours to infuse all the fluids he needs. He is very dehydrated for several reasons -- the fevers, bad diarrhea, vomiting, and not being able to drink enough.

Doug's attitude remains good. When I got there this morning, he was sitting up drinking Ensure; he had ordered it himself on the phone. Unfortunately, he vomited later but that also will lessen with time.

An Occupational Therapist came to see Doug today. OT is similar to, and work closely with, physical therapy. She explained that they are being proactive and want to make sure patients don't lose what strength they came in with. She did an assessment by asking Doug to push and pull with his legs and arms against her arms. She said that Doug seems to have pretty good strength and what he really needs at this point is to try to extend the time he spends out of bed and especially to walk. He did go for a walk today of maybe 200 feet -- way to go Dougie! The fatigue is supposed to get better slowly - the docs say it really takes months to get back to 'normal'. OT will check on him two or three times a week. The job of OT is to make sure the patient will be able to handle "daily living" activities when they get home.

Doug's hair is falling out quickly. Today his shirt looked like an animal pelt, ugh. I think he's going to look cute with a bald head.

The photos I took today of the rash -- it really was more impressive yesterday. It covers his entire body. The specialist came again to look and he thinks it is slowly going away. I agree. We are so thankful that it doesn't bother Doug. I did ask his permission to post photos of his tummy!

I am tired but hanging in there. I feel that I am being supported by prayer -- thanks all!

Day +10 -- fevers, rash, glimmer of neutrophils

Doug is still having fevers, and early this morning he broke out in a rash all over his body. The doc called it an "impressive rash" and called in an infectious disease specialist. The specialist came to look at Doug and asked a series of questions: 'have you recently visited a foreign country, have you used recreational drugs, do you have exotic pets', etc. No to all questions. The specialist admitted he really couldn't know for sure, but he made an educated guess that Doug was having a reaction to one of the antibiotics. Since they didn't know which one, both antibiotics were switched to other ones. The new antibiotics are Aztreonam and Daptomycin. I've never heard of either of them. Doug was also started on Flagyl, so now he is on two antibiotics and two anti-fungal meds. It might take a day or two for the rash to go away. Fortunately, the rash is not causing Doug to itch.

Doug's highest fever today was 102.6 -- he got Tylenol and ice packs and it came back down.

He had a repeat chest X-ray this morning. The right side of his lung looked better but the report said "increased left lower lobe atelectasis". Atelectasis means technically "collapse of all or part of a lung". In Doug's case it is fairly minor involving a small part of his lung and caused by shallow breathing. He will be started on a machine that measures his breaths and encourages him to breathe deeply. Didn't get the name of that gizmo but it sounds like a good idea. Don't want it to progress to pneumonia!

Doug now has open sores in his mouth and not eating. So he still feels pretty crummy. We do expect that to get better soon.

The good news for today: on the blood count, he had 120 neutrophils! Not much but its a start!

I am feeling less stressed today. A good friend made a prayer request in church today, and another friend called to pray with me on the phone. I can feel peace and strength for me, and healing for Doug.

Day +9 -- more fever and worry

Okay, now I am getting worried about the fevers that keep happening even though he is on two IV antibiotics. Last night Doug continued to be feverish. His temp came down later in the morning but went up and down during the day. This evening at 6:30, I took his temp -- it showed 102.3, the highest yet. We rang for the nurse to come check it, and while waiting (the waits always seem endless when one is worried), I took it again. This time it showed 103, not good. The nurse came in and gave him some more Tylenol, and drew blood from his central line for more cultures. So far the blood cultures have come back negative (meaning no 'bugs' were found), but they keep thinking something will show up. If they can define what type of bacteria is causing the infection, then they will know which antibiotic will fight it.

I just called the nursing station a few minutes ago and his nurse said his temp now is 100 and she thought he was doing okay.

The Dr. who made rounds said all this is "par for the course" but it sure doesn't seem that way to me. When he listened to Doug's chest, he heard what he called "icky sounds" on the right side. I asked him what he meant and he said it could be from Doug not taking deep enough breaths, or it could be an early pneumonia that didn't show on the first X-ray. A repeat chest X-ray is ordered for tomorrow. The doc said that if it is a pneumonia, then the antibiotics he is already on "should take care of it". Not very reassuring to me at this point. Doug is now on oxygen, and part of my job is to remind him to take deep breaths.

He is extremely fatigued and nods off a lot, even once when holding the thermometer in his mouth. Just getting up and going to the bathroom which is three feet from his bed wipes him out. The fevers are causing a lot of the fatigue, and I think all the the drugs play a part too. He is getting very little rest, with IV alarms going off frequently, and nurses checking vital signs every four hours, even at night. He sometimes talks in his sleep and says silly things, but is very lucid when awake.

He is not eating much at all -- too hard to swallow. One nurse said she could see "blisters in his mouth". This is from the high dose chemo and we were told to expect it -- one of the more difficult side effects. He did manage to drink two bottles of Ensure over ice during the day.

I think Doug will be in the hospital more than "a couple of days". Now the doc wants to keep him in until his "absolute neutrophil count" gets up to 500. Currently they are zero. Neutrophils are components of the white blood cells that fight infection. Everyone says that between days +10 and +14 the stem cells engraft and the blood counts start to climb. Then he will start to feel better. I hope! This is no fun.