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.

Day + 8 -- admitted to hospital

The day started off with our usual visit to the clinic and blood draws, various drugs given, etc. When the blood counts came back, Doug's platelets had fallen to 9,000 -- below the cutoff for platelet transfusion. Not really surprising as we had been told that most transplant patients receive transfusions. We had to go across the street to P/SL hospital where they handle transfusions. It had been a long clinic visit because they opened late due to the storm the day before. So by the time we got to the hospital infusion center, it was past 5:00 pm. Doug's temp had been okay at the clinic -- but (perhaps predictably) by the time his temp was taken, it was 101.4. So the nurse had to page the transplant Dr. on call. I'll cut out some of the details. The doc came to see Doug and decided that he should be admitted. His reasoning was to admit because of several things: continuing fevers in spite of IV antibiotics, vomiting whenever Doug tried to eat, and the severe mouth and throat sores. I have to agree with that decision. Doug needs a couple of days in the hospital now to get him more comfortable.

By the time we got him admitted, the most recent blood results came back -- Doug also needed red blood cells, which were running when I left at 11:00pm. A new antibiotic, Vancomycin, has been added to the drug arsenal. Doug is on the transplant floor, in the care of a very capable RN who is very experienced with transplant patients. She is responsible for two other patients besides Doug, which is a pretty good hospital nurse/patient ratio. All the nurses gown and glove every time they enter a patient room. Of course they are all private rooms. So I can relax a little and know that he is getting good care while I get some sleep.

I do have some good news -- the chest X-ray results came back -- no pneumonia!

Day + 7 -- more fever and new drugs

This is the third evening in a row that Doug has spiked a fever. Always in the evening, never while he's in the clinic. He's still taking Tylenol for the fever, but liquid now.
Starting today he can't swallow pills, because of the pain in his mouth and throat. So his meds that he was taking by pill have been changed to IV. I will do some of them here at the hotel, because of the time schedule, some they will do at the clinic. At one time today the nurses were running three IV pumps to deliver all the meds.

He has just started wearing a fentanyl patch for pain, so hopefully that will help soon. Fentanyl is a narcotic pain med that can be delivered transdermally - through the skin. We also filled a prescription for Percoset which is another drug that the doc prescribed for "breakthrough" pain and is a pill, which I hope he can take tomorrow.

Doug is now considered medically "malnourished". He is well hydrated because of all the fluids but he needs to take in more calories. He has been sipping on Boost over ice chips and I hope that once the pain meds kick in that he can eat more.

Extra blood was drawn today for culture, because of the persistent fever. On exam, the doc heard a "slight rattle" in Doug's chest, so on the way home we had to stop at P/SL hospital for a chest X-ray. Won't get the results until tomorrow. I am torn between hoping they don't find anything, and wanting them to find whatever is causing the fever. Please pray there will be no pneumonia!

Doug had to wear a mask while we were waiting at the hospital. I just cringed every time someone walked in coughing into their hands and then touching everything. The world can be a scary place.

Denver had snow today - the TV weather people had made it sound like a huge blizzard was coming, and indeed for a short while it looked like it. So evidently many Denver businesses closed early -- by the time we were finished at the hospital the streets were clogged bumper to bumper with stop and go traffic. Streets were a bit icy but only a few inches of snow and no accidents that we could see. It took us almost two hours to get back to the hotel, a drive that normally takes 15 to 20 minutes. The highest speed we achieved was 15 mph; seems everyone wanted to change lanes. Ridiculous and so frustrating when Doug was not feeling well.

We are trying to keep spirits up and take things one day at a time. I found the following which is somehow comforting:

"Prayer is not escape; prayer is the way to conquest. Prayer is not flight; prayer is power. Prayer does not deliver a man from some terrible situation; prayer enables a man to face and to master the situation. When Jesus prayed that the bitter cup of the Cross might pass from him, that cup was not taken away from him. He had to drain it to its last agonizing dregs. But he was enabled to come through the Cross and to emerge on the other side of it in triumph. So often people pray to be delivered from a problem, to be rescued from situation, to be saved from a disaster, to be spared a sorrow, to be healed from a sickness, to be freed from a mental or a physical agony. Sometimes, it is true, that deliverance comes; but far more often the answer is that we are given the strength which is not our strength to go through it, and to come out at the other side of it, not simply as a survivor, but with a faith that is strengthened and deepened and a mind and a life and a character which are purified and ennobled. Prayer does not provide a means of running away from the human situation; prayer provides a way of meeting the human situation."

Day +6 -- more misery

Doug's blood counts are still falling: WBC is 0.1, HCT 29.0 platelets 65. This is not alarming to the medical team, and they keep reassuring us that this is to be expected. We are still hoping that Doug can get by without transfusions, but time will tell. They keep hydrating him every day at the clinic, and adding electrolytes as needed.

I am now running Cefepime antibiotic via the central line 3 times a day, because of the fever. I feel like I just graduated from the "see one, do one" school of nursing. Because of my medical background (Radiation Therapist, retired) I am familiar with much of the medical world, but hands-on nursing was never my specialty.
About half of the auto transplant patients end up running a fever, so for the first time Doug is in the lower percentile.

Doug now has a slight sore throat, increasing mouth sores, and today the bad diarrhea started. They are doing stool and blood cultures, but Doug's doctor told him to go ahead and take Immodium now for the diarrhea. Some docs make the patient wait until the cultures are back -- we are so glad that Dr. Matous is a practical guy!

This evening at 7:30, Doug's temp rose to 100.8 -- so another call to RMCC answering service. It took almost an hour for the doc on call to return our call. Meanwhile I called the answering service again, and then found a voicemail on my phone from the doc stating that his call had been blocked. We do not have call blocking so not sure what happened. So I called the answering service yet again and gave them our land line number at the hotel. During this time Doug's temp had risen to 101.0. Finally we connected with the doc and he said to go ahead and give Doug 1000 mg of Tylenol every 6 hours. If that does not control the fever then Doug will need a different type of antibiotic; they will check him in the morning at the clinic.

The home health service delivered another big box of supplies for our 'home IV'. We opened it up to make sure it was the right stuff - I'm not quite as trusting as I used to be. Good thing we checked, as we found that this time the antibiotic solution was pre-mixed and needed to be refrigerated (there was an ice pack in the box). Nothing was said to us, nothing on the outside of the box about needing refrigeration. Consumer beware -- even with the best of medical care, the patient needs an advocate to check on everything! I have no hesitation about asking questions of nurses and doctors -- what, why, how, etc.

The docs want Doug to get some calories in, and he is trying but it is hard. He is now on 11 different drugs, so that plus just feeling lousy makes it hard to eat. Today he has had ice chips, 1/3 cup applesauce, 1/2 can of Boost, and an ice pop. Oddly enough, his weight is holding at 171 so far. Must be all the fluids they pump into him.

Doug's attitude is still mostly positive. He is concerned about me; he made sure I would lay down for a nap this afternoon. Gotta love this guy.

We love you all -- and thanks for the prayers!

Day + 5 -- fever

Our clinic visit on Day + 5 was uneventful. Doug was getting a slight sore throat along with the mouth sores but nothing that alarmed anyone. His blood counts had fallen more, WBC 0.2, platelets 95, but again nothing that was not expected. He now is getting daily Neupogen shots to help kick-start new cell production.

However at 8:30 in the evening he spiked a fever of 100.6. We had strict instructions to call the clinic if he had a temp over 100.5, so I called right away. Got the answering service, blah, blah, finally the doctor on call called back. He said to go ahead and call Coram, the home health service and they would send a nurse out to start the IV antibiotics. OK -- except we did not have that phhone number. We had been given a "list of important numbers" but it did not include Coram. They had sent out to the hotel, back in the beginning, a "fever kit" which consisted of two large cardboard boxes, one containing a IV pole, and one a box of meds. We had not opened the boxes, thinking that there was nothing we needed until when and if the nurse came out. Finally it dawned on me that inside the box must be a number for Coram. So there I am, holding the phone and talking to the doctor with one hand and fumbling with a sharp knife trying to open the sealed box. Yes, there was a number inside!

So I got Coram's answering service and finally a nurse called me back. I knew that the fever meds needed to be started within two hours of the fever spike, so was getting a bit anxious. The nurse did make it to the hotel with 15 minutes to spare. He drew blood, which we are to take to the clinic this morning. Then he showed me how to mix the meds and hook up the line to Doug's central venous catheter. I had already learned how to care for and flush the lines so that part was really not too difficult. It was after 10:00 pm by this time, and the meds need to be given every 8 hours. So we were up early this morning to get the IV meds going by 6:00 am.

Guess I am venting to you all - not being able to find a phone number in an already stressful situation just adds to that stress. I will be giving feedback to the clinic today. Personally I think the doctor should call the home health service, not the caregiver. We have great respect for all the medical personnel but nothing is perfect.

Doug is feeling awful, as you would expect. Hope this is a better day.

Day +4 Neutropenic

Doug is now officially neutropenic. WBC is 0.3 -- sounds kind of scary but that is expected and it will probably be zero by tomorrow. This means that if he gets an infection it would be dangerous as his body cannot fight it. In that case he would go on really strong IV meds and need lots of prayers! He is already on pills to hopefully prevent viral, bacterial, and fungal infections. This week will be the worst part and should get better after that.

We were in the clinic for 5 1/2 hours today. Doug needed an extra hour and a half for some magnesium. I always feel better after the docs and nurses assure us that Doug is "right on schedule, doing well".

He now has the mouth sores - looks bad but Doug says the pain is tolerable so far. He is only eating ice chips, jello and a little ice cream. I have to keep a log of what he eats now as well as all his meds.
It could be worse -- Doug gets a drug called Kytril that is preventing the chemo-induced nausea. So we are very thankful he doesn't have to experience that.


Neither of us is getting a lot of sleep but we are managing to rest during the day.
The report from Doug on how he is feeling: "Crappier than yesterday". We can do this.
Love to all.

Day +3 Hanging in there

We had our usual three hour clinic visit this morning. Doug has lost three pounds since yesterday. The doc basically said not to worry too much - they expect him to lose weight since he isn't eating much. They keep giving him lots of fluid every day - he got an extra bag today, and some calcium added to the IV line, since that value was low.

His blood counts are dropping, as expected. WBC is now 2.5, platelets 185. (He won't be officially neutropenic until the absolute neutrophil count is below 500.) The chemo has destroyed Doug's bone marrow, so there are no new blood cells being made; the counts drop as the mature cells that are still circulating die off. The immature stem cells that were infused on Day 0 have not yet started to work; it will be another ten days or so until they "engraft" in the marrow and learn to become the different kinds of blood cells.

We are told that when we arrive at the clinic from now on, to go right away to our assigned room, not to wait in the waiting room. Doug does not have to wear a mask; the nurse said that a mask doesn't really help much -- better to just stay away from people. We are both washing our hands a lot.

The doc said that he thinks Doug is "two or three days" away from really low counts. He also said that on the physical exam he could see "chemo changes" in Doug's mouth, although Doug isn't feeling it yet.
Doug says that he feels "weak and crappy". But his attitude is strong.

This journey won't be easy, we both know that. But what keeps us strong is two things.
One is the excellent care Doug is getting from the doctors and nurses. They monitor him so closely and know how to support the body during all this. They are all so calm, competent, caring and cheerful that we take a lot of comfort. All their explanations are helpful so that at least we know what to expect.

The other thing is the prayers, love and support we feel from all of you. We pray for strength and we know that God is walking this path with us. I pray that God keeps me healthy and gives me endurance so that I can take care of Doug. I also pray that his attitude can remain positive in the upcoming days.
I was reading Psalm 37 this morning and verses 23 and 24 spoke to me:
"The steps of the godly are directed by the Lord. He delights in every detail of their lives. Though they stumble, they will not fall, for the Lord holds them by the hand."

Day +2 -- Fatigue

We were at the clinic for three hours today -- the daily blood draw, hydration and Dr visit. The saline drip takes two hours. Doug is feeling fatigued and doesn't have much appetite. His blood counts are not in the danger zone yet, and no fevers. He is not sleeping well so we got a prescription for a new sleeping pill.
We are holed up in our hotel room. We did watch half of the movie "Australia" and Doug stayed awake for that.

So not much to report. All is well.
I want to share two sayings that we got in a card from our good friends Gary and Jan Stephan:

"Just when the caterpillar thought the world was over, it became a butterfly."

"Worrying does not empty tomorrow of its troubles. It empties today of its strength."

Love to all.

Transplant Day -- "Day 0"

Today was the actual stem cell transplant, when the cells that were collected from Doug on March 10 were given back to him. This was not a surgical procedure --

a stem cell transplant may sound dramatic, but the actual procedure is simple. The cells were infused through Doug's central venous catheter. The procedure is similar to a blood transfusion.

The stem cells were frozen in a substance called DMSO (Dimethyl sulfoxide), which is used during the freezing process to prevent ice crystals from damaging the stem cells. For trivia buffs, the cells were stored in liquid nitrogen at a temperature of minus 120 degrees C. The first picture shows the containers that were brought over to the clinic from the hospital.

Doug got some pre-meds through his central line before the stem cells, along with saline to hydrate him. The drugs were: Kytril, Ativan, Benedryl, and Solumedrol (a steroid). He was not sedated but was drowsy.

While we were waiting, one of the social workers dropped in to see how Doug and I were doing.

The second picture shows one of the nurses putting the bag of frozen cells into a water bath to thaw. This was done immediately prior to infusion. There were two small bags of stem cells, totaling 5 million cells. Each bag took about five minutes to thaw.

The last picture shows Mary, one of our nurses, manually infusing the life-saving stem cells. She was also monitoring Doug for any signs of problems. Occasionally patients have a reaction to the DMSO, but Doug sailed right through. The cells are injected as quickly as the patient can tolerate - it took only about five minutes or so per bag. It really was amazingly low tech.

After the stem cells, a liter of saline took another two hours; the drugs can be hard on the kidneys so hydration is important. Lasix was given to help flush all the liquids. Doug was permitted to unplug his pump and roll it along for bathroom breaks!

We were in the clinic for six hours today.

Although nothing physically dramatic happened today, it was emotionally draining, at least for me. Doug is very tired.

The day stem cells are re-infused is called "Day O". Tomorrow is Day +1, and so on. Doug will be closely watched -- his counts should start falling in the next few days.

Now one more hurdle has been jumped, and we play the waiting game. Waiting for his blood counts to fall, and then to slowly rise again.

2nd High dose chemo & Happy Birthday

Happy St. Patrick's Day everyone, and Happy Birthday Doug! Today was the second and final high dose chemo, and they didn't even color it green. Today's infusion was uneventful and that's fine with us.

The nurse took an extra blood draw for type and crossmatch. Doug now will wear the special wrist band until his counts come back up. The band will be checked before the stem cell infusion, and in case he needs a transfusion.

We had a consult with the dietician - she will be seeing Doug twice a week. We also saw the social worker; Doug filled out the form called "Five Wishes" that takes the place of a Living Will. I asked for a form so I can fill one out also - it seems very well thought out and is accepted in 40 states.

Tomorrow we go to the clinic but just for the blood draw and Dr. visit. Thursday is the actual stem cell transplant and we will be in the clinic most of the day.

Love to all of you.

High dose chemo

Today was the first of two days of the high dose chemo. The chemo drug is Melphalan (aka Alkeran) - it has been around a long time and has been called the "mother of all chemo". We are told that Doug is getting approximately 5 times the standard chemo dose. This is going to destroy most of the myeloma cells but will also wipe out his bone marrow along with other normal cells. On Thursday he will get his stem cells back to "rescue" him. Right before the chemo started, while we were waiting for the Dr. to come in, I asked Doug what feelings he had, thinking maybe he would say something philosophical. He answered "boredom". So much for deep thinking. Better to be bored than anxious. I think I was anxious enough for both of us. Its not every day that one voluntarily takes a lethal dose of poison. We know that many other people have had stem cell transplants and have done well, so I try not to worry.

There was really no drama today. The Dr. came in to check Doug's vital signs, the nurse drew blood for the many tests they do each day. Two different "pre-meds' were given by I.V. (using Doug's central line) -- Kytril (nausea prevention) and Decadron. The actual Mephalan was a very small bag and only took about 30 minutes. Then a flush of saline. As you can see in the photo, during the infusion Doug played with his Nintendo D.S. We were in the clinic for three hours.

We left with prescriptions for 7 different meds:

• Lansoprazole (Prevacid) to prevent heartburn


• Fluconazole (Diflucan) to treat/prevent fungal infections


• Levaquin to treat/prevent bacterial infections


• Acyclovir to treat/prevent viral infections


• Kytril for prevention/treatment of nausea


• Compazine for prevention/treatment of nausea


• Lorazepam (Ativan) to relieve nausea

As you can see, he is well medicated. Those of you who are praying for us, please pray for no infections. We know those prayers are powerful!

We are to take Doug's temperature several times a day and record it. If his temp goes above 100.5, we have to call the clinic. If this happens during the night, they will send out a home care nurse. They really do not want the transplant outpatients to come into the hospital via the emergency room; that would mean exposure to unknown germs. This afternoon, a messenger delivered two large packages to our hotel room: one was an I.V. pole, the other was a box of medicines. These are in case the home health nurse needs them for urgent treatment of a fever. Makes me think of the Boy Scout motto "Be prepared".

So all is well. Doug has had no nausea yet - those drugs are working! We go back to the clinic in the morning for the second and last round of high dose chemo.

Enjoying some days off

Since Super Doug got his stem cells collected all in one day, we have some time off from the clinic. Monday we go back and Doug starts his high dose chemo, so we are trying to just be normal for a few days. We are exploring the area around the hotel and taking walks along the bike/walk path that borders Cherry Creek.

We got to see our son Kelly and daughter in law Jamee yesterday. We didn't get to see the grandkids -- too great a risk of germs unfortunately. Kelly and Jamee are doing great. We are so thankful that they have jobs in this economy. I am posting a photo of Kelly and Jamee - it is a couple of years old but a nice one.

We have seen daffodils blooming, and the pansies are in the downtown planters. The weather has been wonderful but very dry. We could use some rain. We hope all of you are well; we are so thankful for all the prayers and thoughts.

"Life is either a daring adventure or nothing. To keep our faces toward change and behave like free spirits in the presence of fate is strength undefeatable." --Helen Keller

Stem cell collection and mandatory class

Yesterday was a long day but we got a lot done. We were at P/SL by 7:00 am for the collection (aka "harvest") of Doug's stem cells. By 8:00 he was hooked up to the apheresis machine which started to suck his blood from one central line, run it through lots of tubes to the centrifuge, which separated the different parts of the blood. The stem cell part was collected in a bag and the rest of his blood was returned to him via another of his central lines. Blood in, whiz it around, blood out. Only one cup of his blood was in the machine at any one time. The lines are running under his shirt. For the first hour, there was a nurse right at bedside all the time to make sure all was okay. After that, they came in to monitor the machine and check Doug every 15 minutes. If we needed them, there was always someone within a shout. The team of nurses and technicians explained everything to us; it was really very interesting to learn how the technology works.

Doug was hooked up to the machine for five hours - a long time but he was fairly comfortable. The tubes were just long enough that he was able to use the bathroom when necessary.

The close up of the machine shows the pinkish bag of stem cells hanging on the top right.

As soon as Doug was unhooked, one of the techs personally took the bag of stem cells up to the lab where they were processed and frozen. She said "I'll take good care of these babies."

We got a phone call several hours later that day -- good news -- they collected 20 million cells, and we only needed 10 million! The extra cells will be kept frozen in case they are needed later. Often stem cell collection takes several days to get enough cells, so we are very thankful that the wonder drug Mozobil worked its magic in one day.

We went back to the hotel for a quick lunch, and then headed back to the hotel for the mandatory two hour patient/caregiver class. This consisted mostly of information we already knew, but it was helpful to have representatives of most of the team speak. Presenters consisted of a nurse, social worker, psychologist, and dietician. The psychologist talked about ways to deal with stress; then the nurse talked about the importance of reporting "events" to the clinic immediately. She said "with transplant patients, things can go bad very quickly". We know that, but hearing it added to the stress!

When we finally got back to the hotel (guess I should just start calling it 'home') we crashed on the couch. Later, when I was in the bathroom getting ready for bed, I noticed some spots on the bathroom floor that had been there the day before. We get 'light housekeeping' (clean towels and emptying waste baskets) every day and full cleaning once a week. Tuesday was supposed to be our full cleaning day so I was not happy to see a dirty floor. I have lots of cleaning supplies with me to clean surfaces, but I don't really think I should need to mop floors. So guess I will ask to talk to the head housekeeper. Sure don't want to get anyone in trouble but I must carry out that part of my caregiver duties.

Good results on marrow aspiration

We went to the clinic today for the Neupogen shot, blood draw and they weighed and measured Doug. This is the second time for the weigh-in. I suppose it will become more frequent. Here is an interesting thing - the medical assistant had to go get two RNs - they need three people to agree on the weight. They use the weight not only to monitor the patient's condition, but to factor the amount of chemo (and other drugs) to be given. So if someone writes down the wrong weight -- oops, you might get too much or too little of the high dose chemo. Neither would be good.

For any medical people: Doug's WBC is up to 30.1 (three times normal) -- guess those Neupogen shots are working! No wonder he aches. They don't want it to go any higher - there is a fine line between a "good" high and too much, so they will watch it closely. One nice thing is that Doug doesn't have to get stuck with a needle; they just draw blood from his central line.

We got the report from his marrow aspiration that was done last Thursday. "Low level plasma cell dyscrasia" -- that means they can see myeloma cancer cells but not enough to count -- a very good thing! Medically speaking, this is a very good time for Doug to be having his stem cell transplant, while the cancer cells are low. We are going to whip those cells back and get a long remission!

We have the rest of the day to ourselves. Doug is not sleeping well at night but he does nap on the couch. My job now is to be quiet; I can amuse myself by reading, working on the computer, going outside for a walk, or there is always laundry. I also brought some crocheting and some jewelry making stuff.

Tonight at 9:00 p.m. we go to P/SL hospital so Doug can get his Mozobil shots. Stem cell collection starts at 7:00 a.m. and the Mozobil has to be given that many hours before collection.

“Life is not about how fast you run or how high you climb, but how well you bounce.” Willie Nelson

Slow weekend

We went to the clinic both Saturday and Sunday, to get Doug's Neupogen shots. On Saturday, the RN showed me how to clean and flush the central lines; really not too difficult.

Doug's blood pressure was sky high on Saturday and better today. Probably not too surprising. His discomfort from the central line placement is better today. He is having some deep bony aches from the Neupogen -- one of the side effects as the bone marrow pumps out massive quantities of stem cells. We need a lot of those little buggers; the stem cells have the scientific name of "CD34+" cells and a minimum number for a successful transplant is 2 million cells per kilogram of body weight. They want to collect enough stem cells for two transplants; the extra cells will be kept frozen in case they are needed in the future.

We are keeping a low profile and avoiding crowds and anyone who might be coming down with the flu. The flu is rampant in this area right now, and if Doug gets the flu now it could be disastrous. At best, it would set back the schedule quite a bit until he recovers; at worst it could be fatal, if the flu hits when his immune system is gone. The medical team keeps checking to make sure he doesn't have any sniffles, etc. Every time we go to the clinic they take his temp. So we are hermits but we do go for walks and have taken several drives around Denver.

This morning on the way back from the clinic we noticed some interesting statues -- we found out it was the old East High School, and the adjacent City Park. I took a couple of photos. There was no signage to tell about the statues, other than a date of 1917 on the tall columns. I took a close up of the women - there is a story there, just wish we knew it.

Central Venous Catheter placement

This morning Doug got his Triple Lumen Hickman central venous catheter. This was done at P/SL in the Interventional Radiology department. It is considered a relatively minor surgery and was done using 'conscious sedation', so he was comfortable and will not remember the procedure. For those who want to know more about the mechanics of CVC placement, click on the link to the right.

I took this photo right after Doug got back to the recovery area. He had been dreading it but said it was "a piece of cake". Now he just has to adjust to having the exterior parts hanging out. We got to leave after an hour of 'recovery' -- in Doug's case that meant coffee and graham crackers and bantering with the nurse.

He can take Tylenol for pain as the pain meds wear off.

The CVC will give the doctors and nurses access to give drugs, draw blood, and will be used during the stem cell collection and the reinfusion ("transplant") of stem cells.

Right after we left P/SL, we walked across the street to RMCC clinic so Doug could get his first injection of Neupogen, which is a "colony-stimulating factor".

Patients who are having their stem cells harvested prior to high-dose chemotherapy and autologous peripheral blood stem cell transplantation receive CSFs prior to stem cell collection. Administration of these growth factors helps "mobilize" their stem cells — that is, move the stem cells from the bone marrow into the blood stream to increase the number of stem cells collected for the transplant.

Now we are in the "Mobilization" phase. Doug will get Neupogen shots daily through Monday. Monday he is scheduled to get the new wonder drug Mozobil and then the actual collection process is supposed to start on Tuesday.

Doug is being a trooper -- especially for someone who used to be afraid of needles! He is napping now so I am thinking about going across the street to Target for a bit of shopping.

Good test results, another marrow test

Here are photos of some of the key people at Rocky Mountain Cancer Center. The first person we see when we enter the clinic is Hollie, the receptionist. She always has a smile; her wacky sense of humor is a good match for Doug.

We got our new schedule from Vicki, our transplant coordinator. She is the "go-to" person who really has a handle on everything that is happening. If something needs to be done, Vicki gets it done. She is very competent and capable and makes sure Doug understands what is happening at every step.

Here is Dr Jeff Matous, our transplant specialist. He just got back from a medical conference on Multiple Myeloma; he stays educated on the latest developments in the medical community. We have a lot of faith in him.

Today Dr Matous gave us the results of all the restaging tests that Doug had on Feb. 20. He was very glad to see that there was no sign of myeloma cells in Doug's blood! Unfortunately the bone marrow biopsy was inconclusive -- so today Dr. M performed a marrow aspiration from the sternum. Not the same as a biopsy but it will give enough fluid to check under the microscope so the information will be there. This was done using a way smaller needle and local numbing. Doug said it hurt quite a bit but only for a few seconds.

Dr Matous said that as of now, Doug has achieved a VGPR "very good partial response" from the initial chemo. That puts him in a very good position to undergo the high dose chemo and stem cell transplant.

Today was the day to sign consent forms -- there were so many papers to sign and initial that it reminded us of a house signing.

Every one of the transplant team is not only very good at what they do, but they also have good inter-personal skills. They transmit to us a sense that we are indeed in good hands. I think God is guiding these people and we are so thankful for that!

Staybridge hotel

We took the dogs (Piper the Jack Russell terrier and Chester the Chihuahua) to the boarding kennel this morning. It was hard to leave them there but I know they are in good hands.

We got to the Staybridge hotel about 4:00 this afternoon. It is an "extended stay" hotel so we have a mini kitchen off the living area, and a separate bedroom. They offer a breakfast bar every morning. I was very pleased to see the laundry area -- 4 washers and 4 dryers at no extra charge. There is also a fitness center with two treadmills and weight machines.

Luckily we are getting a discount on the room rate - P/SL has a contract with this very nice hotel.

There is a Super Target store just across the street so that will be very handy. We already picked up a few things there. We took a dry run to the Rocky Mountain Cancer Center and adjacent Presbyterian/St. Lukes hospital. We can get there in about 20 minutes with medium traffic.

We are glad to be settled in our 'home away from home' for the next 30 days.

News Flash - change of schedule

We got a phone call today from Vicki, the transplant coordinator. Doug's schedule has been accelerated. We still leave this Wed to be at the clinic early Thursday morning to sign consents. But instead of going to Denver for two separate trips, now we go for just one 30 day stay. This is good; if all goes according to plan, we might get to come home as early as April 6.

The reason for this acceleration is that Doug has been approved to get a new drug called Mozobil -- this will greatly speed the mobilization and collection of his stem cells.

Mozobil was just approved by the FDA in December 2008 and currently has orphan drug status. We (with the help of the transplant team) had to jump through several hoops to get this drug.

Here is a quote from Genzyme, maker of Mozobil:
"Mozobil is designed to mobilize hematopoietic stem cells from the bone marrow into the bloodstream where they can be collected, making it more likely for patients with certain types of cancers to proceed to transplant. Currently, before a transplant can take place, patients may receive a prescribed dose of chemotherapy and/or other drugs called growth factors to help mobilize their hematopoietic stem cells into the bloodstream. Once the cells are released into the bloodstream, they are collected in preparation for a transplant.
In order for the transplant to take place, a minimum number of approximately 2 million stem cells per kilogram of body weight must be collected. For many patients, this process can take three or four hours over multiple days to complete."

So we are on the fast track now -- speeding along but trying to stay calm and focused. Doug is better at that than I am. I had thought that we had a two week stay and then would come back home before the actual high dose chemo and stem cell transplant. Now the complete process will be done in one trip, and Doug will come home with low immunity.

Need to kick the house cleaning into high gear, so he can have a safe environment when we get back home.

Hair, or not!

We know that Doug will lose his hair from the high dose chemo, so he decided to take matters into his own hands. Better to be in control than to watch it fall out in clumps. His hair had just grown long enough to make a short ponytail. Those of you who have known Doug for a long time will remember his long ponytail from years past.

First he shaved off his beard. Doug has had a beard for the last 30 years; losing the beard was the biggest change I think.

The next day he had an appointment with Shannon, our regular hair stylist (is she now an unstylist?) to get a close buzz cut. We had been told not to shave his head as that can make it itchy later.

I asked Doug if he had any comments to make about losing his hair. All he said was "It will grow back." So much for deep philosophical statements.

I told Doug that we need to take another photo since he is squinting in this one. He said "That is my usual expression."