Hair today....gone tomorrow.

Don sporting the chrome dome OCC look after AST #2. 5/19/06 

Slow and steady goes the race

It is hard to believe that we have been home a week. Don's hip surgeon (Dr. Paul Peters) looked at some Xrays of his hip and told him the wear was minimal and "not to worry". He advised continued hip precautions, however. Of course, if the hip subluxes or dislocates again, we will need to revisit the decision. What a relief to think that he won't need surgery soon.

The second transplant seems to have taken a greater toll on Don's energy than the first. His weight has stabilized at around 20 lb weight loss. His appetite is slowly returning, and he has developed food cravings that rival any pregnant woman! He still becomes quite fatigued when he is on his feet for any period of time. We walked a half a block this morning with the dogs and Don was exhausted for the next two hours. It will be a slow, steady recovery.

The dogs are glad to be home and explore their own yard. They have made great use of the dog door and spent time with me as I pull the field of weeds that moved into our lower yard. Maggie is patrolling, as usual, and captured two baby rabbits in the first 24 hours after we arrived home.

We will be back in Little Rock for another vaccine next week. Since this will only be from Wednesday through Friday, the dogs will stay with their favorite sitter.

Please feel free to call Don and harass him. He is so bored with TV. He has seen every B movie made, I think. He has also become a fan of the food network and gives me menu ideas. After the first chemo, he wanted roasted fennel..... No telling what he will come up with next. He needs friendly distraction PLEASE, before it is too late!

Seriously, though, we do appreciate the emails, phone calls and cards. It certainly lifts his spirits when friends call. If he is too tired to talk, you will get voice mail! Thank you all for your continued support. It was great to be back with my friends at cantor practice this week. God bless you.

Boot Camp is over!

One of our friends at the Myeloma Institute called the induction chemotherapy and two stem cell transplants "cancer boot camp". I am pleased to report that Don passed with flying colors and we are home in Texas! After a week of testing, we saw Dr. VanRhee on Thursday. The reports were all very good. At this time, the myeloma is in complete remission and his bone marrow is responding to the stem cell transplant.

On Thursday, Don received an infusion of white blood cells that were collected after the first chemotherapy. These cells will help to "prime the pump" for Don to develop healthy immunity to the cancerous plasma (myeloma) cells. He also received Leukine, a medication that stimulates the production of white cells. On Friday, he received Vaccine #4 before we left for home. He has had a localized reaction to the vaccine and some bone pain from the Leukine. Fatigue and loss of appetite are still a major concern. He lost around 20 lbs with the transplant. He also lost his hair again and has a good case of "chemo brain".

The trip home was fairly uneventful. Sarah and Chris were here to help me unload and unpack, which was such a blessing! Don was exhausted from the day and we both took rather long naps this weekend. The dogs were excited to go on another road trip and even more excied about being home in their own yard.

I have grown fond of Little Rock and the friends I made there, but it is certainly good to be home! The weeds have taken over in our lower yard, so I have a great deal to keep me busy over the next few weeks. The roses look a little scraggly, but I should be able to shape them up fairly quickly. My climbers are getting pretty pushy, since I haven't been here to keep them in order.

We will return to Little Rock in 10 days for another vaccine. In the meantime, Don is anxious to make an appointment with his orthopedic surgeon to see what can be done about his hip (and when!). I will be teaching an online course at UTA this summer, beginning May 30th. One of the great things about web-based instruction is being able to do it anywhere.

I thank God for His hand in our lives, helping us through these past few months. We both know there are challenges ahead, but the "hard part" of the protocol is behind us now. We will pray for continued blessings, especially for a sustained remission. Thank you all, again, for your cards, emails, calls and prayers.

Things are looking up!

Don saw the othopedic oncologist today. Dr Nicholas (http://www.uams.edu/ortho/faculty.asp) and his resident were great! It turns out that the liner in Don's hip prosthesis has worn, resulting in instability in the joint. Small fragments of the lining ("like sand") have created some inflammation around the joint, which is what is showing up on the PET scans. So, the hip dislocation/relocation incident was NOT myeloma-related. Dr. Nicholas recommended 6 weeks of "hip precautions", as Don would follow after a joint replacement. That means crutches, no flexion >90 deg., bending, lifting, etc. We went to a medical supply store this afternoon and got some of the essential equipment (grabber, shoe horn, etc).

It would be nice to just deal with one problem at a time, but that doesn't seem to be our path . Don is already chomping at the bit to make an appointment with Dr. Peters to get the joint liner repaired. He will need to get a bit more stabilized medially, first. His recovery from this transplant is going well now. His white count was 1.20 K/uL today, hemoglobin 11.7 g/dL and platelets were 301 K/uL. The platelets are the best indicator of robust bone marrow activity, and his have doubled since yesterday...... now within normal range!

They discontinued a bunch of antibiotics. He will stay on doxycycline and acyclovir for another month. They also resumed the Lovenox (anticoagulant) injections twice a day. I picked the precription up at the pharmacy today and said a prayer to thank God for health insurance. One month of Lovenox cost $4,153.00!

They have scheduled the next round of tests for next week. He starts with a MRI on Sunday morning at 10:00 and has another PET scan, skeletal Xrays, bone marrow biopsy and, of course, the laboratory blood-letting! We should see Dr. VanRhee on Thursday morning. After the appointment, Don will get an infusion of his own white cells. That afternoon, they will pull his central line. Friday he will start vaccinations again. With any luck, we will be home on the weekend!

In the meantime, he needs to behave himself and not dislocate his hip again. If he does, I told him that I could help him get it back in place..... I didn't take kickboxing for nothing!!!

As you might guess, our sense of humor is recovering along with the blood counts. Thank you all for your cards and emails and prayers. I'm ready to click my ruby slippers together once again...

Day 14 (But who's counting?)

Yesterday was rough for Don. He was dehydrated again and felt the "worst" he has during either transplant. His electrolytes were off, so he got magnesium in the morning. He has had a low grade fever and intermittent chills for the past few days, but never reached the magic 101 that triggers another antibiotic. The cultures from his central line have come back clean (YEAH!). The GI symptoms were back yesterday and he was unable to eat or drink much.... diarrhea off and on, etc. Stayed in bed all day.

This morning his energy was better. Fever was gone. His white count was 0.48 and hemoglobin was 10.5, so the transfusion & Procrit have helped. His platelets have come up to 180. Not normal by any means, but MUCH better! They gave him fluids and some potassium today. His big worry now is his hip instability. He gets along well on the crutches, but is guarding against bending or doing anything that would stress the hip. We will see Dr. Richard Nicholas on Friday morning. He is the chief of surgery and a specialist in bone tumors (orthopedic oncology). We are both hoping that this is simply a case of a worn out lining in the joint and not osteomyelitis or a bone lesion. It is difficult to get a good MRI of the hip, because the metal in the prosthesis distorts the beam. His PET scans have all shown increased activity in that hip, with a differential of inflammatory process vs. osteoarthritic changes. I am sure there will be more tests next week. At least we should have a game plan before we come back to Texas.

We have watched the weather reports in the Dallas/Fort Worth area with great interest. I can't wait to see what my rose garden looks like when we get home! The air is clear and cool this evening with a nearly full moon. We had a torrential downpour with local flooding this morning. When the humidity is low, the skies are beautiful and clear and it is quite pleasant in Little Rock. But we discovered that can change very quickly with a little mugginess! We are anxious to get home to our friends and family. God bless you!

Crutches.....

Don's is getting around on crutches now, using them mainly to take weight off his right leg. Of course, the left leg is now aching..... We are thankful that the blood clot in that leg has resolved. His white count rose a little today (0.07 K/uL...we are aiming for somewhere over 3.00), but his hemoglobin is still low (9.4 g/dL). He got a Procrit injection today to try to bolster red blood cell production. His platelet count is still low, but not critical (80 k/uL). They shot an Xray of his pelvis today and scheduled him for an appointment with an orthopedic oncologist on Friday. We were both relieved to have someone else look at his hip stability. Orthopedic problems are a big part of Multiple Myeloma, so these folks have a lot of experience.

So we are in a holding pattern for now. If all goes well, we should be heading home by the end of next week. They did blood cultures this morning, so we will be able to see how the infection is doing. We will know a lot more in the next few days. Keep praying for an uncomplicated recovery!

Day 11 post transplant #2

This morning went much smoother than yesterday. Don is a little stiff from the fall yesterday, but tells me he isn't having any significant pain from his hip. In retrospect, it was good that he got blood and platelets yesterday. Even the infusion, Don's hemoglobin was only 9.5 and hematocrit 28. Platelets were 65. WBC 0.05, so it is up a little from yesterday.

Don's energy and alertness have been better today. He spent the entire afternoon surfing between racing, hockey and golf. I guess it doesn't get much better than that! This evening, he is complaining of generalized body aches and malaise. He has a low grade fever, so we are assuming that the bone marrow is starting to work again. They will draw blood cultures again in the morning.

I took a long nap this afternoon, so life is looking brighter to me right now!

Did I share my most recent "Arkansas moment" ?

Yesterday I got on the elevator with three men. One man was on his way to pick up his wife and newborn. The second was rather ragged and worn. One was dressed in scrubs and had a hospital nametag. The staff have their job titles in big letters hanging below their tag with "RN", "Patient Tech" etc. This man's tag said "Decon"

The ragged guy greeted each of us with a good morning and asked how we were doing. As we rode up, he stared at the nametag of the guy in scrubs. Finally, he smiled and said "Hey, are you a Deacon?" Chocking back a chuckle, the guy graciously said, "no, I work for decontamination. If I ever set foot in a church, I would probably be struck with lightening". Those two men got off the elevator and the new father and I laughed all the way to the 7th floor!

Gotta love Arkansas...

When it rains....

Don and I were both looking forward to the "double digit days" post transplant. That usually means that the counts reach bottom and the stem cells start to take hold. The past 24 hrs have certainly been interesting.

Don complained of increasing fatigue yesterday.... worse than he has had to date. His hemoglobin was 9.9 yesterday morning and down to 9.3 today, so they infused him with 2 units of blood this morning. He continues to have problems with dizziness and low blood pressure in spite of the fact that he has been on IV fluids 24/7 for the past five days. Part of the problem is low levels of albumin and protein in his blood, which leads to osmotic changes, etc. The blood should help that, too. His platelet count was borderline critical (32). White count was 0.03 (about where he was at this time with the last transplant). He continues to struggle with nausea and some diarrhea.

For those of you who are not fellow medical professionals, this all adds up to "he's pretty darn sick".

We got home from the hospital around 1:30 this afternoon and Don settled in for a nap. Son Christopher called and while I was talking with him on the phone, I heard Don yelling for help. Seems he was changing clothes and twisted the wrong way and dislocated his hip prosthesis. Needless to say, he was in a great deal of pain, stuck on hands and knees on the floor. He refused to let me call 911, fearing a trip to the wrong ER. Both of us knew he didn't need to be in an ER as neutropenic as he is. In the process of getting onto the bed, Don's hip popped back into socket

I contacted the transplant unit. We managed to get to the hospital in the SUV and went straight to Xray (bypassing ER). Then back to the 7C, where he got a unit of platelets. The hip was back in place without any fractures. Of course the concern now is bleeding from soft tissue damage.

So Don is now getting around on crutches (size Xtra large) with instructions for ice and rest.....and to SIT DOWN when he changes his pants from now on! His pain has pretty much abated with a little vicoprofen.

Personally, I have had enough excitement for one day and am ready to turn in. I thank God that this resolved as it has so far. We are indeed blessed! It's all bueno!

Day 8 post transplant #2

Dizzy has stayed with us the past few days. They kept Don on a continuous IV drip the past two days and he seems to finally be getting caught up on fluids. His blood counts continue to drop. White count was 0.04 K/uL and platelets were 40 K/uL. His hemoglobin has dropped to 10.0 g/dL. Pesky "Crappy" returned for a visit the past couple of days, but we sent him packing with a little Flagyl.

Don's spirits are OK and his sense of humor is returning a little. We are both bored with being in the apartment, although I must admit it is much better than the winter experience. At least I can sit on the patio with the dogs. We have had a lot of rain here this week and pray that some of it is finding its way to Texas.

I continue to read and knit while waiting at the hospital. We are spending 4-6 hrs a day in the outpatient transplant unit. Just finished my second prayer shawl this visit. I have been blessed with new friends here in Little Rock, who call and check in on us regularly. Don is reading his emails in the morning, but his concentration in still low, so he may not be responding as quickly as he usually would. He also looks at the messages posted here. I know you miss all of those forwarded jokes!

If things go as they should, his counts should nadir (bottom out) in the next 2-3 days before the stem cells start to take hold. I thank God, who continues to bless Don with an uncomplicated recovery. Keep the prayer lines open!

Eight Dwarfs? Dizzy is here....

I guess I spoke too soon. Dizzy joined us today. Don lost about 10 lbs of fluid in the past 24 hours as the effects of the steroids wore off. That resulted in a big drop in blood pressure. He barely made it out of the shower this morning before going to the hospital. His BP was 85/50 (seated), so they gave him a liter of fluids. The also gave him some Zofran for nausea, which has helped with fluid intake. The Zofran is less sedating, so Don has been awake most of the afternoon. I took a big nap, however!

His white count and platelets are dropping. WBC was o.41 K/uL and platelets were 115 K/uL today. His hemoglobin is better than the last time around (11.8 g/dL). Of course, fatigue is a major problem and he becomes winded easily.

As luck would have it, we shared a room today with another nurse practitioner with MM. She works with a neurology group in Florida. A neat lady (43 yrs old) who was diagnosed when they were planning back surgery. She had a plasmacytoma in her hip (a consolidated tumor that arises outside of the bone marrow). Before she got into treatment, she developed critical hyperviscosity with plasma cells occupying 70% of her blood (normal is 14%). She and her husband shared an amazing testimony of their blessings in getting treatment. They found housing through a Baptist church in Little Rock because their pastor at home knew someone.... They have been connected with Angel Flight, which provides air transportation to and from treatment free of charge. A friend is living at their house to care for their two children who have been left behind, etc. etc.

Their story is a reminder of the many blessings we have experienced in this journey. Not the least of which is the many friends who continue to call, email, etc. Don is lying on the couch as I write this and sends his greetings. Es todo bueno con el Dios.