Light at the end of the tunnel

Well, today we began to see the horizon once again! Don's white count was 1.86 K/uL this morning and they are trying to schedule our discharge appointment for Monday. His energy is slowly improving, but he continues to have very poor activity tolerance. He has been awake all day, playing Tiger Woods golf on the Xbox this afternoon (he said he beat Tiger in a tournament... I think he may be hallucinating....). His white count needs to be 2.0 for us to go home. There shouldn't be a problem with that. Thank you all for your comments and encouragement. We will be home soon!!

14 days post transplant

Don's energy is starting to improve, put his patience with recovery is declining. I can't say that I blame him. The white count is slowly recovering (VERY slowly). He was 0.65 k/uL this morning. His platelets are increasing, as well. His hemoglobin was 9.9 M/uL this morning, so he will get procrit tomorrow. The orthostatic changes have continued, with a little improvement each day. He is still getting a liter of saline IV every morning. We are hopeful that we will be able to go home early next week. I wish I could be like Dorothy in the Wizard of Oz and click my heels together and say "There's no place like home"..... Unfortunately I left my ruby slippers at home.

12 days post transplant--but who's counting?

OK, we had a bit of a thaw today in Little Rock. Most of the ice melted off the sidewalk, so I don't need to worry about old wobbly D fallling on top of everything else. It is really a shame to see the ice go, though, I was just working up to a good case of cabin fever....

Bogie (the bichon-- don't let those brown eyes fool you!) learned very quickly that ice was just another great means of entertainment. Too bad they don't have a canine ice skating competition.... I think we might have a potential gold. What was really comical was seeing yours truly sliding along behind two dogs going in opposite directions on two leads.... NOT my idea of a graceful presentation, but the dogs loved it. Bichons were court dogs, historically.....bred to be clowns!

Don had a good day Saturday and Sunday was a downer. He has had nausea and diarrhea off and on and decided that he didn't want to eat for a day. Needless to say, the dizziness got worse. I have become a nazi nurse now and he is tiring of my interruptions to his sleep...."would you like jello or a popsicle, dear?"..... "Baked potato or rice?"...... "Ensure or Boost?"...... You can imagine some of the responses I get. He finally gave up and agreed to eat, especially when I reminded him that we weren't going to go home until he could make it through a day without being dizzy.

He got another liter of saline this morning. His white count was 0.09 (WOW, up from 0.02 on Saturday) and his hemoglobin was 11. His platelets were 32 (and that is after a unit was infused Saturday). We have a ways to go, but I think things will pick up from here. He is impatient and a bit discouraged. It is a strain being away from home for so long.

But in the midst of all of this, his sense of humor is coming back. Every time I give him something to eat, he comes with the empty dish and says he "did what he was told", often with some smart aleck comment like "please don't beat me".... I knitted him a soft stocking cap to wear in bed. It has stretched out of shape already because he pulls it down over his ears and eyes to shut out the light. Looks like one of the characters in Cosby's Fat Albert series....

We do appreciate all of your comments and emails. I know you all appreciated the 20 forwarded messages you got over the weekend. He is offline again, now, but I will get him back pestering you as soon as possible. God continues to grace us with love, patience, good medical care and many wonderful friends.

10 days post transplant

Well, we got our arctic blast. Freezing rain last night and continuing this morning. The temperature has dropped. The dogs are definitely NOT PLEASED!

We decided to brave the ice and go into the transplant unit. It was a good thing. Don's platelet count was critical (13 K/ul), so he got a unit of platelets in addition to his two liters of IV fluids. His white count has been 0.02 K/ul the past two days. We hope that levelling off means it will start to recover soon. His hemoglobin has dropped to 10.5 g/dL today. We are watching for signs of infection, since his CRP (a general indicator of inflammatory process) doubled from yesterday. They drew blood cultures this morning.

UAMS is going to implode a dormitory next to the hospital tomorrow morning, so they are limiting access to essential personnel. If everything remains stable, we won't need to go back until Monday morning. It will be good to have a day off!

Don was awake all day yesterday, which is a first for the month. His sense of humor (ornery) is back. He started to look at email this morning, so you may be getting some jokes soon. They gave him steroids before the platelet infusion, so he is a bit hyper and restless.... you all can have him back at Methodist if he keeps this up!

He has kept up with comments on the blog and really appreciates knowing people are reading it and thinking of him. God bless you!

Nurse Practitioners

I can't say enough about the great care we have been getting in the transplant unit. This outpatient unit treats only myeloma patients. The unit is run by APN's, with collaborating physicians from the clinical faculty. They are all excellent. We have been under the watchful eye of Mike Robinson, a Family Nurse Practitioner who has been there since 1999. He got Don's number very quickly and has been very good with him. We appreciate the careful explanations and time they spend with us. Many of the patients are our age (or younger) and very knowledgeable about the disease. The nursing staff and technicians are also great. Now, if they could just fix the parking problem and the elevators.....

But, then, we wouldn't feel at home, would we?

8 days post transplant

Well, they are predicting an "arctic blast" tomorrow in the Little Rock area. So much for the burst of spring we have had the last two days..... Reminds me that my daughter and son-in-law spent three days getting through Arkansas on their way north Christmas 2004.

Don is 8 days post transplant and beginning to stay awake a little more! He had some GI side effects last night, but they have subsided (mucositis is a common side effect of melphalan chemotherapy). He continues to get a liter of IV saline every day, since he still has some orthostatic problems (blood pressure drops and pulse rises when he stands up, causing dizziness). That is getting better, though.

His white blood cell count hit bottom yesterday with a count of 0.01 K/uL Today, it had climbed clear up to 0.03!!! Platelets are rebounding (clear up to 32 K/uL!) For those of you who are reading this and wondering what I am talking about, the normal white blood cell count is 3-12 K/uL. Don's bone marrow was completely wiped out by the chemotherapy (which was the goal). The increase in cells today indicates that the stem cells are starting to take hold. Platelets (involved in blood clotting) often drop with the chemotherapy, leaving him prone to bruising.

His spirits have been much better today, since he has a little energy. I am sure there are quite a few emails that he hasn't returned. Be patient, you will be getting all of those jokes forwarded again pretty soon.

If all goes well, we will should be able to go home in a week or 10 days. They are talking about doing this again in 6-8 weeks! Can't wait!! Please feel free to post comments by clicking on the comment link at the bottom of the message. I will see that he gets them!

Keep the prayer lines open. God continues to bless us!

6 days post tranplant

The past two days have been pretty rough for Don. His counts continue to drop. (White count was 0.06 this morning with a platelet count of 61). Unfortunately, he has continued to have orthostatic changes in his blood pressure, resulting in a lot of dizziness when he tried to move. I am beginning to think that his hair may grow back blonde!

Seriously, though, his standing BP was 85/50 after two liters of saline yesterday. After the third bag, he started to perk up a little and we were able to come home. He has been sleeping most of the time and the nausea has prevented him from taking more than a liter or two of fluids by mouth. He got another two liters of saline this morning in the transplant unit and the started a Reglan drip on the vacuum infuser. He ate a good dinner this evening and walked the dogs. He actually stayed awake for a couple of hours! Our APN told us to expect his counts to drop for a 2-3 more days before the stem cells take hold. He won't be getting any growth factor with this phase of the treatment.

The weather has been quite pleasant and sunny with a high of 65 today. The Bradford Pear trees are getting ready to bloom. We are blessed with only "normal" side effects of the stem cell transplant and, of course, the time we have together.

4 days post transplant

Today is five days post-transplant and Don's counts are starting to drop. He began to feel the effects of the melphalan yesterday morning, with some bone pain and nausea. He got progressively more fatigued during the day and stayed in bed most of the afternoon and evening. This morning he got a liter of fluids at the transplant center, since his orthostatic BP was 84/50! It requires a lot a pump force to get blood to up 6'4"!! Anyway, he felt a bit better after that, but still has some nausea and extreme fatigue. His white count was 1.17 kg/uL this morning, platelets were 110. He is still anemic, but with a stable H&H. Electrolytes were all normal! So we continue to wait and watch. When his WBC nadirs (near zero), they will start growth factor shots again. I imagine he will continue to get a liter of fluids each day. We spend 2-4 hrs a day in the transplant center.

Don's spirits have been good, considering all he is going through. He appreciates the emails and cards and knows that people care. The dogs and I have a bit of cabin fever, since the weather remains cold, but sunny and beautiful. I am amazed at the number of people who are still out on the driving range! The biggest issue for us is boredom and loneliness. The dogs are restricted from getting in Don's face, which frustrates our bichon! I have been knitting and playing computer games and, of course, a great deal of time in prayer. I have a group of friends on a "caregiver emergency list" in case I start to lose it here! So don't be surprised if you get a call.

Thank you all for your continued support and prayers. It means a great deal to both of us. In spite of the circumstances, God continues to bless us in so many ways.

Stem Cell Transplant

It is snowing in Little Rock today. Arkansas drivers are just as bizarre as those in Texas when it comes to white precipitation. Don is asleep on the couch with the dogs and isn't up to talking, much less responding to emails. He had high dose chemotherapy (melphalan) on Tuesday morning in preparation for the stem cell transplant on Wednesday. The melphalan clears the body in 18 hrs, so they give the stem cells exactly 24 hrs from the chemotherapy. In addition to the antiviral, antibiotic and antifungal meds he was on before, he took 40 mg of Dexamethasone for the past 4 days. Overall, the chemotherapy and stem cell infusion went without a hitch. The major side effect so far has been lack of appetite and hiccups, which he had with the dex in the last round of chemo. As I understand it, the most serious side effect of the melphalan is stomatitis (mouth sores). He chewed ice prior to, during and after the infusion to cut down on that.

Don is very fatigued and told me he felt like his "body is falling apart". We were told to expect his counts to start to drop on Sunday (5 days), with a nadir around 8 days. At that time, they will start growth factor again. They look for the stem cells to "take" somewhere around day 10. That is when he will begin to see the light at the end of the tunnel. We go to the transplant unit every day. The past two days, they have given him an infusion of IgG, since that titre has been low. So far, his hemoglobin is holding around 10.5.

In the meantime, we just watch and wait and try to keep him comfortable and hydrated. His spirits have been good, considering everything he is going through. We still try to watch the "Stooges hour" in the morning and catch the Daily show and Colbert Report in the evening. The dogs keep us entertained, as well. Thank you all for your emails and calls. They really lift his spirits. I know you will miss all of those forwards over the next few days!!

As Don would say, "It's all bueno" in Little Rock. I know Es todo bueno con el Dios.

Two gay male nurses!??

2nd leukopheresis 2-3-06

I am on a cell separator which draws off blood through the right central line (triple lumen IJ-a permanent triple lumen line that exits the right upper chest) & separates off the white blood cells then returns the rest to me. These WBC's are then frozen & will be reinfused after the 2nd transplant. I'm not certain of the biophysiology except for the fact that it increases immunity. I did the same thing on 12-9 & got those cells back on 12-29.

Apheresis machine

 

University of Arkansas cheerleader (just joking)

 

covered bridge

 

Pinnacle state park

 

our babies

Arkansas sunrise

 

Chia, me, Louann, Bill Briggs & Mark Hinson

 

country estate

 

Hay everyone,
Isn’t it hard to believe it’s February already. Time just flies especially when you’re an old fart.
We returned to LR last Wednesday (no speeding ticket in Hope, AR this time – I think Clinton had his boys gunning for me) for my 3rd vaccination which is a 2 day process – blood work & growth factor shot on day1 then the vaccination with 2 other SQ shots all in the same spot in the arm on day 2. The vaccination has to be given by the physician. I had a pretty strong reaction this time and actually had flu symptoms & a lot of swelling & redness at the site then as it resolves it itches like mad. All this is to be expected is easily managed with Tylenol & Benadryl & believe me is nothing compared to chemo side effects.
This week has been lots of retesting again – bone marrow, EKG, pulmonary functions, cardiac echo, CT of sinuses & chest, PET scan, MRI & every blood test know to man (I average about 15-20 tubes per draw – no wonder I’m anemic). They are both assessing my progress & also checking to make sure there are no occult infections, etc. before they kill off the bone marrow before the transplant. Friday I will have the 2nd apheresis where they take off WBC’s that I will get back after the 2nd transplant. I will see Dr. van Rhee on Monday & if all is well I will get chemo (Melphalan) on Tuesday then the 1st transplant on Wednesday. The transplant is really a simple process involving reinfusion of some or the stem cells they took back in December & only takes about 30”. The side effects from the chemo are apparently what knock you on your ass. Everyone says they have a slower onset are much stronger & last much longer than the stuff I originally had with prolonged fatigue lasting for weeks & the potential for mouth sores (you have to keep your mouth iced for 30” before & 3-4 hours afterwards to help minimize problems). Again these effects vary from patient to patient so we will see how it goes, but you may not be hearing from me much the remainder of the month. It is all still a small price to pay for getting better.
The 2nd transplant will be some time in May & we will repeat the same process again. There is not much happening in the interim so maybe I’ll be able to come in & see some of you. Although I was home much of January I chose to avoid the hospitals because of flu season & the fact that my WBC count has been hovering around 2,000.
Generally I feel well most days but still fatigue easily & have no stamina. There are things I would like to do but can’t because I don’t have the energy or concentration. Still about 2 days per week and for no obvious reason I am pretty much exhausted and sleep most of the time. Mary Jo says I get pasty looking. It is very weird.
Mary Jo is still spoiling the hell out of me and I still have the wonderful support from all of you which is so much appreciated. If everything continues to go as it has I expect to be working again for PECA in some capacity in a year or so.
What can I say besides it’s all bueno!!!!! I do want to remind you all that MJ has the blog up & running with pictures etc. and all the updates. She will post things on the blog if I am not feeling well.
Love you all