Blog for Jackie Sue while at the Mayo Clinic, Rochester, MN. UPDATED. This blog now covers her progress after her mini-allo MUD transplant. Her transplant was the first one to be performed by the Mayo Clinic.

Wednesday, May 31, 2006

Wednesday +49 (5:30 PM)

Today is day +49. Tomorrow will mark the halfway point in this long process. At that point it makes you want to begin a NASA-like countdown to zero. The hospital actually marks today as the halfway point. That is because Jackie had two "Day Zeros". Her stem cells arrived too late to begin the process on Day Zero so we started on Day One.

As I reported yesterday, Jackie's CMV viral load is down to only 500 copies. It seems they want to run another CMV PCR test tomorrow. As I mentioned, the 500 level is the lowest level they are able to detect. The blood for the current result was drawn on Monday morning. She will have had 8 additional IV infusions since the test was drawn and the results delivered. It is likely the test will be negative. Even if it is still positive it is likely they will switch to an oral anti-viral medication.

I mentioned in yesterday's blog that her counts had declined somewhat. I was a little worried it be due to some other problem that had not presented. Since there were no fevers, rashes, etc. it didn't seem likely. I've learned, however that the blood work is the first indicator of something amiss. I'm happy to report that today's counts improved! Her RBC (Hgl) has improved to 9.6 from yesterday's 9.0. It would still be nice to see this in the 12.0+ range. This would signal a return to a more-or-less normal energy level. Her WBC count improved to 2.6 from yesterday's 2.2. Again, a 4.0+ range would be nice. Her platelets improved to 131 from yesterday's 116. Of course the improved platelet count is great! Hopefully days of sub-10 numbers are a part of history! I think once she is free of the Ganicyclovir IV treatments her counts will improve rapidly. Now if we can just get past any serious GvHD issues we will have it made! As they taper the anti-rejection drugs the possibility becomes more likely. As you may recall they have cut one of the anti-rejection drugs by 1/3. It will take several days for her blood level to reflect the reduction.

Jackie was fairly tired and didn't feel well much of the day. It was surprising give her Hgl level. Usually she feels better when it gets near 10. As the day went along she did improve. This is the norm. It seems to take much of the day to get to a descent energy level. One of the things that helped her feel better was a special video we received from home!

Along with the newspapers and bills we received a DVD from everybody at home. It really made her day to be able to see everyone. I want to say "thank you" to all those who participated! We even got a "get well soon" from our Dentist and his entire staff! All the family, friends, and even Cloe the dog were there. I just want Rachel and Mickey to know I am working on a response video. It will feature Mickey prominently. I intend to make him (and maybe Rachel) famous! Lookout they come! Remember when the Beatles sang U2s Vertigo? If not, here it is one more time. It's amazing what one can do with some creative editing!

Until Later....

Bruce and Jackie
From Rochester, MN

Tuesday, May 30, 2006

Tuesday +48 (10:00 PM) CMV update

We just returned from the hospital for the nightly CMV infusion. It seems Jackie still has a tiny level of the CMV virus floating around. The viral copy count is 500. If you will recall the count first started at 2000, then 2500, and last week the count was 4000. A count of 500 is the smallest unit the detector can detect. If I am not mistaken if they locate one virus copy it gets counted as 500. We will get a better idea of how they wish to continue tomorrow morning when we see the doctor. My guess is they will wish to continue the Ganicyclovir for another week on a once-per-day schedule.

Jackie's counts declined a bit today. Her RBC (Hgl) was down to 9.0 from yesterday's 9.9. Her WBC count declined to 2.2 from yesterday's 3.1. Her platelets declined to 116 from yesterday's 125. It could be an anomaly, or it could be a sign of something else taking place. She has not had any fevers, so we will need to wait and see what tomorrow's counts look like. Hopefully it isn't a trend and she will rebound tomorrow.

I think I mentioned this, but the entire apartment building is filled with Middle Eastern Arabs. Lots of guys dressed like shieks and women in the full-cover burkas. I spoke with the maintenance guy today and asked if he had ever met the owner of the building. It seems he is from Dubai and the penthouse is reserved for the owner and his family. It is never rented out - ever! The maintenance guy told me the owner has never visited the place since built. It seems he built the building for his "subjects". I think they get to stay here free!'s the redneck coming out in me...but I'm paying a small fortune for the apartment and a small fortune to fill up the car at the pump. Something doesn't seem right. Hopefully the Mayo Clinic is charging those guys twice as much as me to make up the U.S. balance of trade. Like Larry the Cable Guy I say, "Git R Done".

Until later,

Bruce and Jackie
From Rochester, MN

Tuesday +48 (12:30 PM)

Just a couple of quick items. Today was the first day for us to see Jackie's actual transplant doctor. He is currently on his yearly 2 week "on call" status at the transplant center at the hospital. For those that may not recall, all the doctors cycle through the hospital for a 2 week period about once per year. We had not seen Dr. Hogan since before the transplant.

He/We are waiting on the results of the latest CMV PCR test. He thinks it will be negative or nearly negative. Depending upon the results Jackie will likely go to either a once per day Ganicyclovir treatment or to an oral anti-viral. We should know the results by later tonight. I also don't have blood test results for today. The lab people were running behind due to the holiday.

The doctor reduced by one third one of the anti-rejection drugs she is taking (Mycophenolate). This reduces by 3 the number of pills she is required to take per day. Yea! They will also begin tapering off the other anti-rejection drugs. This could cause a reoccurrence of GvHD problems. He was optimistic that any problems might be minor due to the fact that she has had few problems to date.

Jackie is feeling tired today. It is one of those low energy days. This is probably due to some of the pain meds she took this morning for her back pain.

Later today she has a hair appointment. She is going to get a hair trim. I tried to talk he out of it....but no luck. She thinks they can make the hair she has look a little better.

I'll post the blood test results and the CMV results later tonight as they become available. For now I have to work on the Italian washing machine/dryer. They brought a new(er) one in this morning to replace the one that sprung a leak yesterday. I'm not certain, but the new(er) one is making a terrible sound. It is vibrating enough to nearly shake the entire apartment! Is there some kind of limit as to exactly how may clothes you can put in a washer? Is it OK to just fill the entire tub? That should work...right? :)

Until later....

Bruce and Jackie
From Rochester, MN

Monday, May 29, 2006

Monday +47 (10:00 PM) Memorial Day

Today was hot and sticky in Rochester. The temperature climbed into the 90s today. It reminded us of April in Oklahoma:)

Jackie had a fairly good day today. She had some nausea yesterday and today. This is likely as a result of trying to stop her nausea meds. She had discontinued both her Compazine and the Scopolamine transdermal patch. Today she went back to using some Compazine to ease the discomfort. Because of the nausea and one instance of vomiting during our hospital visit they gave her an IV shot of Ativan. This is a muscle relaxer and anti-nausea med. They did this while I was out of the room. The shot was not necessary as her nausea is usually very short lived. As a result of the shot it put her to sleep for several hours. Once she awoke she felt good.

We ended up having a late lunch at the Olive Garden (again). Her appetite, although small, continues to improve. When we returned to the apartment we found that we had water all through the kitchen and creeping into the living room. It seems our tiny Italian-made combination washer/dryer had sprung a leak. I shut it off and called the apartment office. After about 30 minutes someone showed up to check out the problem. By this time I had the water mostly mopped up with the doors open and a fan blowing air across the wetter areas. They didn't want to call in maintenance due to the holiday. So, tomorrow we will have the maintenance people in fixing whatever is wrong. I've decided the Italians are much better at making food than washers and dryers!

Jackie's blood counts showed a good improvement today. Her RBC (Hgl) improved to 9.9 from yesterday's 9.5. Her WBC count improved to 3.1 from yesterday's 2.5. Her neutrophils are at 2.02. Her platelets continue to creep up. Today they were 125 up from yesterday's 122.

We just returned from the hospital where she received her nightly Ganicyclovir infusion. Due to the holiday they did not have the results of her CMV PCR test back. Hopefully they will have it early tomorrow. If not, then I would think by tomorrow night's treatment it should be available. My guess is that it will show improvement. The reason? Jackie's counts continue to improve in the face of the Ganicyclovir treatments. The Ganicyclovir is notorious for depleting blood counts. The CMV virus is also notorious for depleting counts. I believe her improvement is due to a lessening of the CMV viral load. Once we receive the counts we will know for certain.

I just noticed that yesterday's video had 46 viewers. Since it proved so popular I'll try to do some more. I'll get some shots of the Mayo Clinic from the inside and the subway system and the stores located below ground.

Until Later,

Bruce and Jackie
From Rochester, MN

Sunday, May 28, 2006

Sunday +46 (Midnight) Actually +47 Now

This post is rather late. I got caught up watching old WWII movies on the TV and I'm just getting around to doing the daily post.

This morning I took the video camera to the hospital and spent some time shooting some video of the local area around the apartment. I put the video and pictures together as a small "music video". Most of you will probably be able to see it below. I finally learned how to embed the actual video into the blog. If you don't see the video box below it is because you don't have Shockwave installed. If that's the case, you will have to miss the video. A description of how to install a Shockwave plugin is beyond the scope of the blog. Sorry!

I was lucky to get any photos of Jackie. She complained the entire time that "no one wants to see me looking like this". I convinced her that everyone would like to see how well she is doing.

She began the morning with her regular back pain. As with many mornings it was very severe. I feel certain it must be due to some sort of electrolyte imbalance. She took a couple of pain pills and was fine. In fact, after returning from the hospital and after sleeping off some of the pain meds she said she felt as close to normal as anytime since the transplant.

The day was really warm here in Rochester. I think it got into the 90s today. It was very windy so it didn't seem as hot.

We were recalled to the hospital for an earlier-than-normal return visit. Jackie required another unit of magnesium. This is getting to be a regular occurrence. It seems about every 3 days she requires a unit. They seem to feel this is quite normal.

The doctor put us on a "No MD" schedule today. That means we will no longer be seeing the doctor or PA during our daily visits. She will receive her IV transfusion and talk to the nurses. Unless there is something unusual the doctor will not do the normal examination. This is in preparation for going to "Clinic Visit" status. Jackie would have been in Clinic Visit status long ago if not for the CMV problem.

Another CMV PCR test will be conducted tomorrow. With luck it will be negative and she will only require another week of Ganicyclovir.

Jackie's counts continue to remain stabile or improved. Her RBC (Hgl) count today improved to 9.5 from yesterday's 9.4. Her WBC count remained unchanged. Her platelet count improved to 122 from yesterday's 112. I was reading through the blogs yesterday and it is hard to believe that she went for months with platelet counts below 40!

Well, until later...

Bruce and Jackie
From Rochester, MN

Saturday, May 27, 2006

Saturday +45 (5:00 PM)

I hope everyone is enjoying the Memorial Day weekend!

Jackie has been really tired again today. Her counts continue to be constant, but with her RBC (Hgl) low her energy level is also low. The doctors still compliment her on doing well and think she is well ahead of normal at this stage of the process. All-in-all she feels well today with no nausea or major complaints. Her back is still bothering he some, but not as bad in past days. So far she has been able to do without her Scopolamine transdermal patch and Compazine for nausea. Hopefully these are a thing of the past.

As I mentioned, her counts are relatively constant. Her RBC (Hgl) is unchanged from yesterday's 9.4. Her WBC count is also unchanged at 2.5. Her platelets continue to improve slightly to 112 from yesterday's 106. I think the only thing new is they think she has oral thrush. I thought THRUSH was the evil empire in 1960s TV show, "The Man From Uncle". It turns out it is a fungal infection and very common when high doses of antibiotics are taken. I don't think it is too serious, but they treat it with an oral mouthwash. Jackie says it doesn't taste great....but it's not too bad. She rinses 4 times per day.

We ate at a new restaurant today. Mac's is the name of the place. They are actually just below our apartment and maybe only 100 yards from the front door of the building. They are always busy, so that is one reason we've never been there before. Mac, it seems, is Greek so they offer lots of Greek specialties. Today I had a Gyro with fries. It is easy to see why the Greeks never were successful in fast food. Although good, it was like eating an Arby's roast beef sandwich in a Taco Bell taco shell. Really messy! Jackie had fried chicken strips. Her appetite still isn't back to normal. She wasn't able to eat a lot. She still continues to lose weight slowly. I did a quick calculation and her weight has fluctuated 33 2/3 pounds since we began the transplant. Of course this is based upon her "fluid retention" period. Overall, she is down about 20 pounds from where she began the transplant. As she often says, "If you could bottle this process, Weight Watchers would be out of business."

I may make a few changes to the blog. It seems that I was asked if another CLL site could link to this one. I also posted a copy of the blog link to a CLL forum site. There is very little written about the actual transplant process. A great deal of information exists with regard to diagnosis, treatment, etc. but nothing outlining what it is like to go through the process one day at a time. I also thought it might be nice for others who might be venturing to Rochester to know a little more about what goes on both at the Clinic and within the town itself. So, from this point forward it will likely be more than just family and friends reading this blog. I thought it might be interesting to post a few more photos and maybe even some videos. For example, at several places inside the Clinic you will find volunteers playing Grand pianos most of the day. You also see some amazing artwork. In the hallways they have a full set of Andy Warhol paintings, a Joan Miro, Tiffany lamps, etc. They also have some unique glassworks and sculptures.

Well until later,

Bruce and Jackie
From Rochester, MN

Friday, May 26, 2006

Friday +44 (5:30 PM)

Jackie felt reasonably well today. Her back pain was better. She still required a pain pill this morning to get things started. She was able to have a late lunch at the Macaroni Grill

Several of Jackie's counts continue to gradually move downward. It is hard to know if this is due to the Ganicyclovir or if the CMV virus is growing. Another PCR test will be done either over the weekend or on Monday. If the viral load counts continue to grow her medication will have to be changed. If the counts are down then we know it is the anti-viral medication that is suppressing the counts.

Her RBC count declined to 9.4 from 9.6 yesterday. her WBC count declined to 2.5 from 3.1 yesterday. Her platelets declined slightly to 106 from 110 yesterday. Given her lowered RBC count I am surprised at the level of energy she was able to muster today.

I hope everyone has a great Memorial Day Weekend!

Bruce and Jackie
From Rochester, MN

Thursday, May 25, 2006

Thursday +43 (10:30 PM)

We just returned from the evening IV infusion. This evening she received her typical anti-viral plus a unit of magnesium. She is still having difficulty keeping a high enough level. This, in spite of the fact, that she is taking 5 magnesium pill supplements per day.

Jackie started off the morning feeling really bad. She was having extreme back pain and was barely able to make it on her own to the morning hospital appointment. Prior to leaving for the hospital she took one of the Oxycodone pills. This only dulled the pain. Once at the hospital they gave her a small amount of muscle relaxer. By the end of the hospital stay she was feeling much better. She continued to feel better the rest of the day. In fact, she felt better than she had been in several days.

I didn't post this morning because I did not have her blood counts before leaving. Her RBC (Hgl) count was 9.6 down from 9.9 yesterday. Her WBC count was 3.1 down from 3.7 yesterday. Her platelet count was 110 up from 109 yesterday.

This afternoon we received a box of "goodies" and a beautiful handmade ornament from Ing-Jen Shih. I'm including a photo of it along with a panoramic photo I put together of our skyline. Someone asked what we could see out our apartment window. So I put together a high resolution image that was stitched together in Photoshop. If you click on either photo they will load at a larger size. The buildings in the center are the Mayo Clinic. Also the old building. I actually labeled some of the buildings, but the blog software will not allow me to upload a higher resolution version. I've also included a couple of night photos. The photos don't really do justice to our skyline. It really is very pretty!

I hope everyone has a great Memorial Day.

Until later,

Bruce and Jackie
From Rochester, MN

Wednesday, May 24, 2006

Wednesday +42 (6:00 PM)

It was another warm day in Rochester. Unfortunately it was cloudy and windy much of the day. A chance of thunderstorms exists. It feels a lot like Spring in Oklahoma today.

Jackie didn't feel well at all today. She continues to have a lot of back and neck pain. She spent much of the time today in bed. In fact, she just took one of the extra strength pain pills. Hopefully this will help her feel better.

We will be returning to the hospital in a couple of hours for the 2nd IV treatment. We spoke with another doctor about the CMV virus today. She, too, felt that an increase in viral load counts wasn't too unusual. We will know more when the next test is conducted next week.

If you recall, I mentioned in the last post that Jackie was given a prescription yesterday for high blood pressure. I questioned if it was necessary. Today they asked that we cut the dosage in half. They discussed whether she should be taking any meds for this at all??? It seems her blood pressure was back to normal this morning.

Jackie's counts continue to remain stable. Her RBC (Hgl) was 9.9 up from 9.8 yesterday. Her WBC count was 3.7 down from 3.8 yesterday. Her ANC count was 2.41. Her platelets were 109 up from 106 yesterday. As I've mentioned several times the Ganicyclovir will suppress blood counts a great deal. Once she is off the anti-viral treatments her counts should improve.

Until later,

Bruce and Jackie
From Rochester, MN

Tuesday, May 23, 2006

Tuesday +41 (10:30 AM)

Just a quick update for the night. We just returned from the hospital for the nightly IV infusion. Along with the usual anti-viral treatment she also received another unit of magnesium. She continues to need IV magnesium in spite of the fact that she is now taking 5 pills per day of oral magnesium. It seems the entire transplant alters the electrolyte balance. They also prescribed a blood pressure med for high blood pressure. I'm not certain that was needed. Today her blood pressure was off a bit, but it has been normal most of the time.

I did a quick count this evening and she is still taking 28 different pills per day! I think at one point her intake approached 50 pills per day.

Until Later,

Bruce and Jackie
From Rochester, MN

Tuesday +41 (11:30 AM) CMV, etc. update

We just returned from this morning's hospital visit. To update everyone on the status of the CMV treatments...

The doctors were not too concerned with the uptick in the CMV virus load. They felt that only one week of treatments wasn't enough to tell them much. They will continue treatments for another week before making any kind of determination. It seems it is common for patients to see an increase in the CMV counts even after the anti-viral treatments have begun. There are drug resistant strains of the CMV virus. If this turns out to be the case, there are stronger forms of treatment. One of the nurses told us it is not uncommon for people to be on Ganicyclovir treatments for at least a month. As I've mentioned before the Ganicyclovir treatments tend to suppress the blood counts. The good news is that Jackie's counts continue to be stable and, in most cases, improving.

Jackie's RBC (Hgl) count today was 9.7 down from 9.8 yesterday. This count has been trending downward slightly. Since it is the "energy level" count the lower the number the less energy Jackie feels. I think the highest it has ever been since transplant has been about 10.5. Prior to transplant he number was in the 12.5 range. As you may recall, they will transfuse red blood cells at a number below 8.0. This gives you some idea of the effect one might feel with changes in the numbers.

Jackie's WBC count was 3.8. This was an improvement from the 3.7 yesterday. With an improving WBC count comes an improvement in the ANC (absolute neutrophil count). The neutrophils are the agents that fight off the various bits of infections and bugs we tend to get. In fact, we were told that since her ANC and WBC had improved so much that it really wasn't necessary to wear the surgical mask all the time when out and about. Until now, anytime we left the apartment or car Jackie was required to wear the mask. They suggested we keep it handy and use it if around someone who is sneezing or coughing. They also suggest using it while outside and near any dust, debris, or construction. But, for example, it is not necessary to wear it inside a restaurant. Not wearing it makes one feel far more "normal".

Jackie's platelet count continues to improve as well. Her count today was 106 which was an improvement from yesterday's 91 and 76 as recently as four days ago. It is still down from the record of 167 a few weeks ago. The docs think the CMV and the medications are all depressing the counts. If the CMV can be controlled and the medication discontinued I think her counts will quickly all return to normal ranges.

As far as her general well-being; today she is feeling well. Her energy level is still low. Her palsy still continues and her GvHD rash is still in place. But overall, today she is feeling better than yesterday. She has learned to deal with the palsy. The rash doesn't itch and isn't giving her any problems at this point. Her biggest problem is lack of energy. She sleeps a great deal and tires easily. But, overall, each day seems to get a little better!

Sorry for such a long account.

Until later,

Bruce and Jackie
From Rochester, MN

Monday, May 22, 2006

Monday +40 (9:45 PM) CMV Update

Just a quick update. We just returned from the evening IV infusion. We got the results of today's CMV test. It seems her CMV viral load count increased during the last week in spite of the anti-viral IV infusions of Ganicyclovir. The count had increased from 2000 to 4000 over the last week. This is still a very low count. A high count can be as high as 200,000. Still, it likely means at least another 2 weeks of 2 (or possibly 3) times a day infusions. We will know more after speaking with the doctors tomorrow.

Until later,

Bruce and Jackie
From Rochester, MN

Monday +40 (7:45 PM) TGI Friday

No, it is not Friday. TGI Fridays is where we ate a late lunch.

Jackie didn't feel well much of the day. For whatever reason her back and stomach have given her problems for more than a week. It is difficult to know if the problem is muscular or something else. We were able to drive around for a short period of time after lunch but had to return to the apartment because she didn't feel well. As I write this, she is once again feeling OK.

Jackie's blood counts continue almost unchanged. Her RBC (Hgl) count was 9.8 down from yesterday's 10.1. Her WBC count continues to improve. Today she had a WBC count of 3.7, up from 3.4 yesterday. Her platelet count was nearly unchanged at 91 from yesterday's 92.

Remember Lisa? That was the woman that didn't engraft on the first transplant and required a second transplant. I ran into her husband as we left the hospital this morning. He said she is doing well with counts that continue to rise. Her RBC count is still low, but the others are doing well. He says they are even talking about sending her home for a short stay. That is amazing considering her condition 20 days ago!

They have once again reduced Jackie's Cyclosporine intake. This is the primary immunosuppressant that prevents GvHD. She has gone from a daily intake of about 900 mg per day to her current 250 mg per day. It is likely these decreases will cause an increase in any GvHD that might take place. As I mentioned yesterday she has a minor rash that is likely a form of GvHD. A little disease is a good thing. The idea is to keep it tightly controlled.

By tomorrow we should have the results of the CMV PCR test. With luck, it will be negative which will mean (again with luck) that we will only have one more week of twice daily IV anti-viral treatments.

Well, it is time for out nightly trek to the hospital.

Until later,

Bruce and Jackie
From Rochester, MN

Sunday, May 21, 2006

Sunday +39 (5:45 PM) Olive Garden - Again

Well....nothing new in our routine. We spent the morning at the hospital getting a 1 hour drip infusion of Ganicyclovir. Add the usual visits from nurses, doctors, and routine checks such as blood pressure and weight and it is a 2 hour visit under the best of circumstances. The good news is her counts continue to improve. Her RBC (Hgl) level was unchanged at 10.1. Her WBC count was 4.3 which is a substantial improvement from yesterday's 3.4. Platelets also improved dramatically to 92 from yesterday's 76. Tomorrow they will do additional blood draws to test her Cyclosporine level. They will also perform another PCR (polymerase chain reaction DNA) test for the CMV virus. If the test is negative they will continue to give her IV Ganicyclovir for another week and perform another PCR test next Monday. If that test comes back on Tuesday or Wednesday of next week negative they will discontinue IV anti-viral treatments and switch to an oral med. The reason they are so concerned with the CMV virus is because it can present in many different ways and if left untreated can be very serious.

The doctor took a look at the new rash and declared it "probably a case of GvHD". She resolved to "keep an eye on it". We received a prescription for a steroid cream to apply. The cream has to be refrigerated. Why? I have no idea. Certainly makes application less fun. Jackie is hoping the rash doesn't spread beyond her arm and fingers!

As with most days her energy level was very low this morning. It is about all she can do to drag herself the two blocks to the hospital. As the day goes along the energy level improves. We had a late lunch at the Olive Garden. Afterwards we drove around Rochester sightseeing.

In about 2 hours we will return to the hospital for Round 2 of the daily Ganicyclovir treatment. We plan on arriving just before 8:00 PM - just in time to watch the first hour or so of Desperate Housewives!

Until Later,

Bruce and Jackie
From Rochester, MN

Saturday, May 20, 2006

Saturday +38 (Saturday Night 10:00 PM)

Jackie started off the day with some nausea. During the hospital visit this morning she was vomiting . This was the first time in more than a week that she has had a serious problem with nausea. By the time we returned to the apartment at about 11:30 AM she had very little energy. I'm not certain if the lack of energy is due to the anti-viral treatment she is receiving. I wouldn't think that would be the case, but one never knows! As the day progressed she felt much better. This seems to be a standard pattern. She starts the day feeling bad but improves as the day progresses.

The good news is that her counts continue, for the most part, to improve. Today her RBC (Hgl) was 10.1. Her WBC count was 3.4 (with ANC down to 1.6). These were the only two counts that were down. Her platelets improved to 76.

Tonight is another long night. We arrived at the hospital at 8:00PM (after 2 all-new episodes of Cops, of course!). She required a unit of magnesium. This is a 2 hour treatment. Her anti-viral can run concurrently so we should be out of the hospital by about 10:45.

Jackie has developed a minor rash on her finger and elbow. It is not painful and does not bother her in any way. The doctors are watching to see if it might be drug related or if it is GvHD. Only time will tell.

Until later,

Bruce and Jackie
From Rochester, MN

Friday, May 19, 2006

Friday +37 (10:45 PM) Shrimp on the barbie

Well, Jackie got her first steak in awhile. We went to the Outback for steaks. Unfortunately they weren't great, but she managed to eat about 1/2 of hers. That is quite an accomplishment.

Jackie is feeling reasonably well. She does have a new rash that is popping up. It is hard to say if it is drug related or GvHD. We (and the docs) keep a close eye on any new rashes.

We finished up the IV anti-viral about 10:15 tonight. Again, kind of a late night for both of us. Jackie did a small amount of housework and I managed to get in a short bicycle ride after Outback.

The weather is supposed to be colder and rainy a good part of the weekend. So we will probably be stuck inside a lot of the time.

Until Later,

Bruce and Jackie
From Rochester, MN

Friday +37 (11:45 AM) Muffin Tops and Unlimited Calls

We just returned from the hospital. Jackie is doing well this morning. I think the CMV virus was depressing her blood counts. The anit-viral IV meds are still suppressing them but overall they are on the rise again. Her RBC (Hgl) is 10.0. Her WBC count is 3.5. Her ANC (absolute neutrophil count) is 1.8. And her platelets are 67. These are all up substantially from yesterday.

It is amazing how closely tied her Hgl count is tied to energy level. I told her this morning that I felt her Hgl count would be much higher today. I could tell by her walking speed that whe had more energy. As I've said before (and the doctor reconfirmed this morning) once the Hgl count gets into the 12s she will feel normal again.

OK, OK. as you obviously know by now this Starbucks thing is driving me nuts. About every other day I go over for my Grande-Mocha-Frapp-and-blueberry-muffin-for-$6 -fix. Each time I have to wait in a long line to watch people pay $4-$5 for a cup of coffee. Each time I spend my wait trying to determine how to make their system better. In other words, if I were the competitor next door how would I get them to come to my coffee shop instead of Starbucks. I have two words.

Are you listening?

Yes, I am!

Ok, Muffin Tops

Now, I cannot take credit for this original thought. I have to give that to the folks at the Seinfeld TV show. If I were operating a coffee shop next door I would just sell just the muffin tops. Forget the stumps. Muffin tops really are the best part. For $1.95 I would give my customers TWO muffin tops. I think I would make my motto, "No stumps, never has been, never will".

I would also change my drink sizes to small, medium, and large. I never order a "Venti" (the really big size). Why? Because I'm afraid I'll screw up the word "Venti". I mean, really, how SHOULD it be pronounced ? Grande I can handle. I thought I was alone in my fear. I even considered consulting with one of the speech pathologists here at the Mayo Clinic. Perhaps I should set up an appointment with the Psych Department so they can help me get through my angst? In the end, I just Googled "pronounce: Venti" (I suggest you give it a try). It seems 11,700 people have the same problem and fear. So at my competing coffee shop my sizes would simply be small, medium, and large. I think I would sell more large drinks this way.

Ok...back to Jackie. I think she is feeling well enough to enjoy unlimited phone calls. So feel free to call her anytime. The only caveat would be that she goes to bed early a lot of times. By the end of the day she is tired. If you could limit calls to before 8:00 PM CDT I think it will be fine.

If she feels up to it today I might get her a Grande-Mocha-Frapp and muffin top over at the Starbucks. No Venti, no stumps.

Until Later,

Bruce and Jackie
From Rochester, MN

Thursday, May 18, 2006

Thursday +36 (10:30 PM) Olive Garden

Jackie's tastes continue to improve. Today she asked to go to a late lunch at the Outback Steakhouse for a steak. Unfortunately they are not open for lunch, so instead we went to the Olive Garden. She didn't have a full lunch, just soup and breadsticks. But it was a great start. She had another smoked chicken/chesse/mayo sandwich for supper. The grapes that made her gag 3 days ago tasted normal today.

Her energy level continues to be low, but she is feeling well enough to do light housework. I would argue against doing any of the work, but it gets her up and moving and getting exercise. The docs and nurses keep preaching how important it is to be active. So if throwing clothes into the washer or folding the dried clothes keeps her active I don't argue.

Jackie's counts continue to hold steady. There was little change from yesterday. Her RBC (Hgl) count was 9.4. Her WBC count was 2.6 (up from 2.4 yesterday). Her platelets were 49 (down from 50 yesterday). Her neutrophils were 1.22 (up from 1.07 yesterday). Hopefully these will continue to improve.

This afternoon I received a couple of phone calls and several "Breaking News" updates from Pryor. It seem that Thomas Restaurant caught fire and burned to the ground. It was a 50 year old landmark in Pryor. Most everyone in town grew up eating in Thomas'.

Until later,

Bruce and Jackie
From Rochester, MN

Wednesday, May 17, 2006

Wednesday +35 (10:45 PM) Taste Returns

We just got back to the apartment after the evening IV Ganciclovir treatment. Even though Jackie is on an out-patient status it still requires a lot of hospital time. We arrive at the hospital every morning at 8:30 AM. Today we got out at about 11:45. We returned tonight at 8:00 PM and we returned at 10:00.

It is amazing, but within the last 48 hours Jackie's sense of taste has begun to return. Her nausea has lessened a great deal. She is reporting about a 60% return to normal for taste. She now says "that tastes normal" to quite a few things. Today she actually ate a smoked chicken with cheese and mayo sandwich. I purchased a bunch of Pringles in different flavors. She says a lot of them taste normal. I think within a couple of days she will never want to see another Boost or Ensure chocolate flavored drink ever again. She has lived on these for the last month. It has been about the only thing she could tolerate.

She is also taking fewer pills. There are still a LOT, but down substantially from a month ago. I think this helps. It would be impossible to determine the chemical interactions that might occur when this many substances are being consumed. She still continues to be shaky. This is likely still being caused by the Cyclosporine which has been reduced again. Her palsy is better, but not completely gone.

In spite of her lowered counts she continues to have a descent energy level. I think part of this is due to the lessening of her nausea. I think as she begins to eat and drink more this will improve the energy level. She didn't do any treadmill or stationary bicycle today, but she thought about it! Instead she paid a few bills and did a little laundry.

Until later,

Bruce and Jackie
From Rochester, MN

Wednesday +35 (Noon Update)

We just returned from the hospital. Today's visit took up most of the morning. Most of the time was spent on waiting for meds to be delivered and for lab blood work to be drawn.

Jackie's counts continue to be in a downward trend. Her RBC (Hgl) was 9.4 which is only slightly down from yesterday. Her WBC count is 2.4 also slightly down. Her platelets have dropped to 50 which is also down. The biggest concern is, of course, the platelet count. They are running additional tests to see if they can determine why this has dropped from a normal range. It could be as a result of either the CMV or the anti-viral that is being used to treat the CMV virus. It could also be some of the other drugs. One of the reasons we were at the hospital so long this morning was due to the fact they switched her IV flushes from Heparin to Sodium Citrate. The SC solution has to be especially made by the pharmacy department. They thought that the repeated Heparin injections, which are used to keep her central line open, might be lowering her platelet count. It seems every time you turn around they are injecting a full syringe of Heparin into each of her two lines.

We will return tonight for another IV anti-viral infusion. We will likely have to do this for about 3 weeks. They repeated the PCR CMV test yesterday to check results and Jackie had already seen a reduction from a 2500 viral load count to 2000. The count can go as high as 200,000+. They hope to see a negative PCR test by next week. They will continue the IV anti-viral infusions until they have 2 PCR-negative tests. In the end, this usually works out to be 3 weeks. At that point they will prescribe a new oral anti-viral drug.

Remember the lady that had the second transplant I talked about a few weeks ago? I asked the nurse about her this morning. I had not seen her husband for more than a week and I was curious about her condition. The nurse told us that she was no longer in the hospital and was now an out-patient. I explained that we must be talking about 2 different people. She said, "No, it's the same lady." She was right! Today leaving the hospital we rode the elevator down with her. She is still very weak, but her 2nd transplant has engrafted and she is doing much better. It was absolutely amazing!

I have one word for you.

Are you listening?

Ok, thanks to my Starbucks comments I've been receiving a lot of email from people with regard to both coffee and Starbucks. A friend sent me a video this morning that is hilarious. I want to warn you that there is a lot of cursing. The "F" word gets used a lot. This isn't for the kids! It is adults only. So you've been warned! I uploaded it to the youtube website. You should be able to see it by cutting and pasting this link, If you don't know how to cut and paste her is a short description. Highlight the link with your cursor. Make certain the entire line turns to some other color. When it is highlighted hold down the Control key on the keyboard and at the same time press the C key (copy). Nothing will happen. Go to the address bar on your browser and erase the address it shows. You can do this by highlighting it and then pressing the Delete key or by putting the cursor at the end of the address and pressing the Backspace key. Either way will delete the address. When it is gone, press the Control key on the keyboard at the same time as you press the V key (I have no idea why the V key is used and not the P - for Paste key). The address link below should be pasted into the browser address bar. Press enter and your browser will take you to the new address.

That's it for Jackie's update and the quick computer lesson.

Until later,

Bruce and Jackie
From Rochester, MN

Tuesday, May 16, 2006

Tuesday +34 (6:45 PM)

We are back at the hospital for round two of the IV antiviral treatment. Today was a good day for Jackie. She received a unit of IV fluids this morning . This always seems to give her extra energy. I think she tends to get dehydrated and doesn't realize it is happening. Of course her energy level might be attributed to her improved blood counts. They have all improved since yesterday - with the exception of platelets. Her RBC (Hgl) is 10.7. This may be the highest it has been since transplant. This, alone, could explain here increased energy level. Her WBC count is 3.1 with neutrophils at 1.36. Platelets, however, have dropped to a low of 56. I will be discussing this with the docs tomorrow to see if they have any thoughts on why they are trending down. Her all-time-high was 165 about one week ago.

Today was a beautiful day in Rochester. Spring was definitely in the air. I was able to get away for about 1.5 hours for a quick bike ride - about 15 miles. When I returned I found that Jackie had visited the gym downstairs for a 12 minute ride on the stationary bicycle. That's not a lot, but it is progress!

This evening they lowered her Cyclosporine level. This will hopefully help with her palsy. Since she has no outward signs of GvHD they probably want to see if they can induce a small amount. Remember it is the GvHD that also gives a graft-versus-cancer effect. A little is good. Also by lowering the amount of immune suppression her body will be better able to fight the CMV virus.

Well, that's about all I have for now!

Until Later,

Bruce and Jackie
From Rochester, MN

Tuesday +34 (Morning Update)

Just a quick note. I am posting from the hospital. They have detected a very low level of the CMV (cytomegalovirus) virus in Jackie's blood. It was at the lowest level of detectability by their equipment (for Stanley L. a PCR test). To combat the virus, which if left untreated , can be very serious they will begin a twice-a-day regimen of IV antiviral treatment. Until this issue is cleared up we will not be graduating to clinic visits. The IV treatments will last at least one week and possibly two. They want to have two PCR-negative tests. They seem confident the antiviral being used will be quite effective as a treatment.

The CMV-positive test likely explains the decrease in recent blood counts. For today they are: RBC (Hgl)9.9 (up slightly). WBC count 2.5 (down from 2.8 yesterday). Platelets 62 (also down significantly). Neutrophils 1.33. Decreases could also be due to some GvHD that is not being presented in standard forms of skin rashes but rather in the stomach or gut.

So today we will spend much of the day in the hospital. She is receiving a unit of magnesium. A unit of fluids. And a unit of antiviral. Tonight we will return for another 1 hour unit of antiviral.

Speaking with the nurses they feel it is par for the course at this point in the transplant process.

Will update later,

Bruce and Jackie
From Rochester, MN

Monday, May 15, 2006

Monday +33 (9:30 PM)

Today was kind of a tough day for Jackie. Her energy level is lower and her nausea was bad most of the day. She has also been depressed about missing Mother's Day and the kids. Talking to them on the phone just isn't the same as seeing them.

Her energy level is low due to decreases in her RBC (Hgl) counts. For reasons unknown her counts continue to decline. Her RBC count was down to 9.5 from 9.6. Her WBC count has declined to 1.20 from 3.2. Her platelets have declined to 85 from 99. These are counts from Saturday. I will have Monday's counts tomorrow. Jackie also received another chest X-ray today. It was routine and we don't expect any surprises.

A lot of things can cause the decline. They have discontinued a couple of the pills she is taking. This may help but only time will tell. The counts can also be altered due to the suppression regimen. These will need to be kept at their current levels for the time being. The suppression also is the likely cause of her shakiness. This seems to be a bit better, however. For whatever reason she has resumed losing some hair. It has thinned even more over the last several days. It has been highly unusual for her to retain her hair and it would be highly unusual for her to lose it at this point. But, as they continue to remind us each patient is different.

She is not to the point of requiring the wheelchair again, but she isn't too far away. Today we went to the grocery store and she was only able to make it down a few of the isles before returning to the car. Part of the problem is the energy level and part of the problem is nausea. Beginning tomorrow we are going to start using some of the stronger nausea meds on a regular basis. We've tried to move away from them because they tend to make her sleepy. I think at this point we have no choice but to continue them for awhile.

I continue to think the nausea is partially caused by a small amount of GvHD in the stomach. The major cause is likely to be due to the continued lack normal taste buds. Things just don't taste right. For example, I bought (and sterilized) two different types of fresh grapes. She couldn't even take one bite because they were too sweet. One of the types of grapes was not ripe. They were actually sour and I couldn't eat them for that reason. For her the sensation was sweet. Really sweet. So until this resolves the nausea will likely continue.

She is still doing much better than many patients at the same stage. We had hoped to graduate to clinic visits today. Perhaps it would have happened, but the doctors rotated shifts today.

There are two things we don't like about the Mayo Clinic. Anyone reading my posts knows my biggest gripe has been the lack of quality food. The other gripe is that doctors are rotated through the various hospital departments on a two week basis. The idea is that all doctors have to get frequent hands-on experience in a hospital environment. From what I can tell each doctor ends up doing a 2 week shift about once per year. This probably works great and is a good idea for most departments. However, for long term care patients (like transplant) it leads to a sense of discontinuity. On Saturday the doctor (who was fantastic by the way) told us to count on graduating to clinic visits probably on Monday. On Monday (today) we had to re-educate a brand new doctor (a lady). In two weeks she will be very familiar with us, our problems, and our needs. Just as she really gets to know us she will rotate out? I think the Mayo Clinic needs to rethink their policy with regard to the transplant portion of the hospital. I've talked with other patients and my gripes are universal. Maybe they will read my blog and something will change:)

Upon return from the grocery store our electronic room key failed to open the door. This signaled another 30 day period had ended here in Rochester. For what it is worth, it seems like only yesterday that our key failed to work and signaled the end of the first 30 day period here. You wouldn't think time would pass so quickly in such a tiny apartment!

If we compare the first 30 day period to the second 30 day period things are definitely better. I think the 3rd 30 day period will see a big improvement in Jackie's condition.

Until Later,

Bruce and Jackie
From Rochester, MN

Sunday, May 14, 2006

Sunday +32 (Sunday 10:30 PM)

I just lost the Survivor pool at work. My Survivor made it to the final 2. Congratulations Duke!

Jackie had a good day today. With no hospital visit we were able to sleep a little later today (8:30 AM). After getting up and taking her normal morning dose of noxious pills and potions we headed off for the flea market again today. Yesterday Jackie was able to make it through 2 of the 11 buildings. Today she made it through another 2. I ended up making it through all 11 buildings.

My big purchase of the day was a bicycle. It is a lady's model. I gave $30 for it. It hasn't been used much. It is a cheap model, a Murray (stop laughing Derrick!). Little did I know that I could have purchased a new Wal-Mart model for about $60. It would have been the correct size. Oh well, this one should work OK for a couple of months and I won't feel too bad leaving a $30 bicycle behind when we leave. I ended up buying $24 worth of tools to make adjustments to it. The brakes, shifter, seat, and handlebars needed adjustments.

I ended up taking a ride of about 10 miles around the river located about 2 blocks from our apartment. They have a great set of bicycle trails that rival those of Nantucket. I'm not certain how far they go, but at 10 miles I didn't find the end.

Jackie's nausea has been much better the last couple of days. She is still fighting bouts from time-to-time, but it seems to be getting better. She still has little desire to eat. Both days while out I offered to take her anywhere she would like to grab a bite to eat. She asked to go to Burger King for a cheeseburger. She was able to eat about 1/2 of the small cheeseburger on both days.

Since we had no hospital visit today I have no blood counts. I will have Saturday's results tomorrow.

I think we will likely graduate to doctor's office visits tomorrow. I'll keep everyone posted. For now, it's back to reading some medical trials on the Internet that deal with CLL, killer T-cells, and dendritic cells and how they work in relation to pulmonary functions. They all come into play for people with CLL when they try to get a flu shot. Interesting fact: flu shots and pneumonia shots don't work on patients with CLL. The problem is patients with CLL often are hospitalized (and yes die) due to simple pulmonary infections, pneumonia, etc. A drug exists for basil cell carcinoma (Aldera) that offers hope as a cell booster in CLL patients. It will be going into clinical trials soon. Of course, Jackie to some extent is past this problem due to her transplant. Her immune system would still have serious problems with flu or pneumonia, but within a year it should be to the point that flu and pneumonia shots will once again work for her just as it would on anyone else.

Until later,

Bruce and Jackie
From Rochester, MN

Saturday, May 13, 2006

Saturday +31 (08:45 PM) The Eyes Have It

Today was another good day for Jackie. She is still low on energy and nauseated from time-to-time, but things could be worse. She is doing well enough that we have tomorrow "off". For the second weekend in a row we don't have a hospital visit tomorrow. I believe on Monday we will discuss "graduation". At that point we will move from daily hospital visits to "Charleton 9" visits. Charleton 9 is the transplant floor. We would move from daily hospital visits with blood tests to two or three time per week doctor's visits in an office. I'm not certain how often blood tests would take place; probably on the days off. So we are likely to still have either a doctor or hospital visit most days.

Jackie's blood counts have trended down a bit over the last couple of days. Still nothing serious and only a part of the process. If her RBC (Hgl) counts would move into the 12+ range I think she would have plenty of energy. For a lot of people it takes a year to get to full, normal counts. Again today we shared a room with another transplant patient during our doctor/bloodwork visit. The patient was +55 and her WBC count was still only a 0.9. Jackie's was 3.2 today (it has been as high as 5.2). Her neutrophil level is still 1.56 which is still very good for this stage of the process. Her RBC (Hgl) count was 9.6 today, down from 10.3 yesterday (and a high of 10.5). Her platelet count was 99, down from 110 yesterday (and a high of 161.

So what's with the eyes?

Jackie wanted to get out of the apartment today so we visited a flea market and some antique stores. While rummaging around I came across a set of 6 hand-blown glass eyes from the late 1800s. I had to have them. Now I'm sure most (all) of you are asking, "Why would anyone want THOSE?" Well, they aren't for me! It seems our largest tobacco customer is a strange, oddball store in Missouri that is a combination grocery store, hardware store, liquor store, smoke shop, and museum. These folks sell a LOT of our products. One of the prized areas of their museum is a glass eye collection. It is their "piece de la resistance". They always save it for the last exhibit on their tour. They don't have any glass eyes like these! So, in the spirit of keeping these folks our biggest and best customers I will be donating my newfound glass eyes to a museum. I'm not sure they will be getting all 6. I might keep a couple. You never know when one might come in handy. Anybody remember the scene from the movie "The Sons of Katie Elder"? Dean Martin demonstrated how to always get free drinks in a bar with an eye patch and a spare glass eye! Rent the movie and you'll see what I mean.

They really are quite amazing. Each one is slightly different. They are all just a little different in terms of color of the sclera (the white part). They even have tiny red veins in some. So, that's why there are eyeballs on the blog tonight!

I wanted to take a quick moment to thank everyone for the cards, letters, and gifts as well as the comments on the blog. I think Jackie received 4 or 5 cards and one gift today alone.

Until later,

Bruce and Jackie
From Rochester, MN

Friday, May 12, 2006

Friday +30 (8:15 PM) Spring in MN

Spring in MN. Last night it snowed just north of here. Today the noon temperature was 38 degrees with rain. The high today was 45. Around here they think this is Spring. I'll bet people were wearing shorts today:)

Jackie did well today. She had some nausea, but it was much better than days past. Her appetite is still poor. That's due to things not tasting as they should. Things she used to eat all the time either have no taste or taste horrible. What doesn't taste horrible? Doritos and almonds. Even the nutritionist that meets with us everyday is amazed these taste normal. Oh well....whatever works.

Jackie's energy level is still very low. She doesn't feel like getting up and being very active. The apartment is so small that walking around it doesn't provide much exercise. About the only exercise she is getting is from the trips to the hospital. I try to get her to stay out of the bed and off the sofa, but the nausea meds make her sleepy.'s my plan...

I asked her if she felt like taking (and making) phone calls. She said she still didn't feel like talking on the phone a lot. I, on the other hand, think it would do her some good to at least get some calls. It will force her to be awake and, in most cases, out of bed or off the sofa. I don't think it is good that she gets deluged with calls so let's try this:

If your first name begins with A-M feel free to call her on MWF. If your first name begins with N-Z (we don't know any Zeldas I don't think) feel free to call her on TTS. We will give her a day off on Sunday! I would suggest a time of 11:00AM-7:00PM. We usually are at the hospital until at least 11:00AM so it wouldn't do any good to call before then. After 7:00 PM she is usually tired from the days activities and may go to bed early or be napping. So this leaves the afternoon and early evenings. I think the activity will do her some good! PS. Don't tell her I posted this until she is MUCH better!

Jackie's counts from yesterday were all down a little. Nothing big and no real concerns. The doctor once again told her she was the transplant poster child. I asked about doing another chimerism study. This is the one that determines the percentage of donor to host cells. He said there was no need for a study that he was certain the results would come back at nearly 100% donor cells given her current blood count numbers. I also asked about a PCR (polymerase chain reaction) DNA-type test. This would tell us what level of CLL cells might still exist. He said that it would be done as part of another bone marrow biopsy done at around day +100. A good result for a PCR test will show no levels of detectable CLL cells. This isn't a guarantee that no CLL cells exist, but it indicates that there are very few and that any remaining cells will have a very tough time reemerging and successfully fighting the new immune system.

As for actual counts they are: Here RBC (Hgl) count today was 9.8 down from 10.0 yesterday. Her WBC count was 3.7 down from 5.0 yesterday. Her platelets were at 131 down from 161 yesterday. These are all still good with the general trend upward.

Phone numbers: Jackie's cell is 918-530-0124.
We also have a phone in the apartment. Until now we haven't given it to anyone (including family, kids, and friends). It is: 507-424-4252.

We will test the "phone on alternate days" program. If it seems like it is too much for her I may ask that we return to the old policy of no incoming calls.

Until Later,

Bruce and Jackie
From Rochester, MN

Thursday, May 11, 2006

Thursday +29 (9:00 PM)

The morning started out a little rough for Jackie. She required the wheelchair to get to the hospital visits. This was due to problems with back pain and nausea.

Once we arrived at the hospital she continued to be nauseated. This wasn't helped by the fact that the lady in the other bed was also nauseated. The other lady began to throw up and guess what? It was like someone who makes you want to yawn as well. In this case it was a little worse than yawning. About the time the two roommates were playing The Vomit Symphony the doctor walks in and gets to play nurse for awhile. For a little while we had both trash cans in full operation. So...that's the worst of the news. After that things got better for Jackie (not sure about the other lady). The doctor commented that if she is only having one or two "symphonies" a day that is OK for this point in the process.

As with most days now her strength improves throughout the day and the nausea seems to get better. She still isn't eating much, but she is getting calories via fluids. The problem she has with fluid retention a couple of weeks ago is long past. In fact, as of this morning she had lost about 8-9 pounds from when we began the transplant. If you compare the maximum weight gain due to fluids to today's weight she has lost about 25-27 pounds over the last two weeks. She says if she can bottle this Weight Watchers doesn't stand a chance!

Today we went for another drive. We toured the local countryside for about 2 hours. It is a little cool outside. In fact it is snowing just northeast of here!

Jackie's counts continue to do VERY well! Her counts (actually yesterday's counts) were 10.0 for RBC up from 9.8. Her WBC count was 5.0 up fro 4.1 the day before. her platelets were 161, up from 114 the day before. Her neutrophils are at 1.61. This is also very good. This now puts two of her three counts in the "normal" range. The nurse made the comment as I was receiving the counts, "With those counts, we won't be seeing you long around here!"

Of course, there could (and likely will be) difficulties ahead. We could still face serious GvHD problems which could be popping up at any time. But, all-in-all I can see steady improvement. Tonight she is watching TV and snacking on her various assortment of pills!

Until Later,

Bruce and Jackie
From Rochester, MN

Wednesday, May 10, 2006

Wednesday +28 (8:00 PM)

Jackie had a much better day today. While her nausea continued and she ate very little it was much improved. Her energy level was also much better today! She was able to walk to the hospital appointments today without the aid of the wheelchair.

We spent most of the morning in the hospital again today. After the hospital visit and blood work she had an inhalation treatment. The inhalation treatment lasts about 20-25 minutes and is done each month. Doing this eliminates one of the pills she takes daily. The reason for the treatment is it acts on a long-term basis to guard against any lung infections. The series of pills she was taking to do the same thing tends to decrease some of the blood cell counts.

I enjoyed a long conversation with the doctor with regard to exactly how GvHD works and why the incidence of GvHD declines in most patients with time. Without going into details the simple answer is that donor cells become desensitized to the host cells and slowly turn off receptors that cause them to attack the host cells. It is like having an allergy. If you are exposed to whatever is causing the allergy you will likely develop a resistance to the offending substance. Anyone who ever underwent allergy shots knows what I am talking about. The better the match at the antigen level the better the chances of having a minor problem with GvHD. The donor database has improved to the point that the Mayo Clinic rarely does unrelated donor transplants that are not at least a 9 of 10 antigen match. In the early days many of the transplants were 6-8 of 10. The Mayo actually did what are referred to as haploid transplants that were 5 of 10 matches. Of the 25 transplants that were completed as part of a study 24 people did not survive the process. Most people died as a result of infections from the common cold. The reason? Because there is no known drug that can be given prophylactically to prevent or inhibit the disease. In transplants massive amounts of anti-viral, anti-fungal, and antibiotics are given to replace and supplement the immune system.

I don't have blood results. They were not ready by the time we left and I did not call or go back for results. I will have today's results tomorrow.

Until Later,

Bruce and Jackie
From Rochester, MN

Tuesday, May 09, 2006

Tuesday +27 5:45 PM)

This morning started out with clouds and drizzle and ended with some nice sunshine.

We spent most of the morning in the hospital. As with most mornings lately Jackie was very weak. The trip to the hospital had to be made in the wheelchair. And, again, she was very shaky and unsteady on her feet. Her nausea was as bad as ever. Yesterday she ate almost nothing. Her liquid intake was better than her solids intake. Any solid food instantly nauseated her and she would try to vomit. Even the smell of food did the same thing. She spent a lot of the day sleeping due to the constant stream of anti-nausea meds.

I discussed this with the doctor this morning and he ordered one unit of fluids to make certain she was well hydrated. He also ordered a unit of IV Kytril. I also discussed the possibility of prescribing either Fentanyl or Scopolamine for nausea. In the end he went with the Scopolamine. It is most commonly used for seasickness and comes in the form of a transdermal patch. It took most of the morning to get fluids and meds infused. She was a little better this afternoon and was able to eat a few solid foods and more liquid.

We believe the reason for the new round of nausea is due to early stage GvHD. At this point the new cells are beginning to engraft in other areas besides the bone marrow. Most often these changes first take place on the palms of the hands and soles of the feet. It can also manifest in the GI tract and cause nausea due to changes in the stomach lining. That is likely what is happening.

How long will it last? Hopefully not long! But, GvHd can be more problematic than the original disease. The hope is that the GvHD will not be severe and will not last long. They hope to have it mostly under control by day +100. The perfect situation is to see some moderate GvHD that will effectively kill off the CLL cells and then subside by day +100 with no anti-rejection drugs needed. GvHD can become chronic and need management for years, however. There is no way at present to estimate the level of GvHD a patient will experience. It is known that a good donor match usually shortens the process - but it is not a guarantee. Of course Jackie's match was a 10 of 10 molecular match.

Jackie's counts were mixed today. Her RBC (Hgl) was 9.8 down from 10.3 yesterday. Her WBC counts was 4.1 down from 5.2 yesterday. Her platelets were 114 up from 110 yesterday.

Until later,

Bruce and Jackie
From Rochester, MN

Monday, May 08, 2006

Monday +26 (11:45 AM)

Today is another cloudy day in Rochester. We have the possibility of rain today and storms tonight.

Jackie attended our morning hospital appointment by wheelchair again this morning. She just didn't have the energy to make the walk. She also had some nausea and that didn't help the situation. She started the morning by taking one of the every-12-hour anti-nausea drugs. It works (I think) by making you sleepy. She slept through much of the appointment and upon return took another anti-nausea med. She has been asleep for the last several hours.

The docs feel she is doing a good job with her nutrition. She is eating more than the 1000 calorie per day minimum (just barely) and her liquid intake is also good. It just takes a long time to recover from the transplant process. They still think it will be another month or so before she begins to recover her sense of taste. Someone asked if her fluid retention problem had resolved. The answer is "yes". As of this morning she was actually about 5 pounds lighter than when she began the transplant process. I'm certain this is due to a 1000 calorie per day intake.

Since we are now out-patients we shared a treatment room with another transplant patient this morning. I had seen her around, but never spoken with her. She, too, had her first "day off" this weekend as well. She received an actual bone marrow transplant (versus stem cells). The process wasn't any different from a stem cell transplant it just means her cells came from the actual bone marrow rather than peripheral blood. She was at day +40 and wasn't doing as well as Jackie. I heard her discussing her case with her doctor. Her counts were still bad. They were improving but she was still requiring very frequent transfusions. For example her platelets were only 13 and this was after a transfusion on Saturday. Her caloric intake was only about 600 for both Saturday and Sunday. So the point is....even thought Jackie has had ups and downs she is far ahead of most patients by this time in the process.

In Jackie's case her counts are all doing quite well today. Her RBC is 10.3 which is up from 9.4 yesterday. Her WBC count is skyrocketing. It is 5.2 up from 4.2 and 4.6 on the previous two days. Her platelet count has recovered to a very good 110 (up from 62 yesterday). Her platelet count may move up more due to the discontinuation of a medicine today that helped suppress this count.

Someone wanted me to post "normal" blood counts. Actually the RBC counts I've been giving you are hemoglobin counts and not specifically RBC counts. There is a correlation between the two and the transplant center focuses on the Hgl part of the number. I've chosen to just report it as RBC which really isn't accurate. But to keep things the same I will continue to just call it the RBC count. So here they are: RBC "normal" is: 12-16 grams per deciliter for women (today she is 10.3). The normal for WBC count is: 4.3 to 10.8 (the real number is 43000 - 108,000 but the trailing 3 zeros are usually dropped. Today she is 5.2. The normal platelet count is typically above 150 and can range as high as 400 (again the trailing 3 zeros are usually dropped). Today she is 110. As you can see Jackie is moving closer to "normal" each day! Her WBC count actually moved into the "normal" category (low end of course) today.

The nurses felt we would be graduating to clinic visits (versus hospital visits) within the next week. They want to see Jackie's nausea improve a little before sending her off.

So, why did I include a photo of Jackie's meds this morning (you can click on the picture to enlarge)? One reason, I thought it would be good (again) to show just how much stuff she has to take. A lot of the meds are 2 or 3 times per day! Secondly, do you see the bottle of pills in the center? That is VFend (chemical name voriconazole). I had the prescription refilled this morning. When I picked it up the girl told me it was a $40 copay. She looked at the bottle and said, "This isn't right!" She went back to the pharmacist and I could see them talking. In a few minutes she returned and said, "Whew! I'm glad I noticed that! You only had 30 pills and not 60. That would have been a problem!" I said, "Why?" She explained they were expensive pills. So...I said, "How much? They only cost me $40." She punched a few keys on the computer and said, "That bottle is $2550!"

Now keep in mind what I've said about the Mayo Clinic actually being much cheaper than Tulsa. It has been my experience that drug costs are 1/2 to 1/3 those in Tulsa. Tulsa the bottle would probably have cost $5000. So...remember my post about coffee?

Are you listening?

Yes, I am!

I have one word for you!


Coffee! It is still coffee.

This morning while waiting for the $2550 bottle of pills I think I saw Starbucks sell at least that much in coffee! Everybody walking through the hospital door seemed to have a cup.

Sunday, May 07, 2006

Sunday +25 (Sunday 10:15 PM)

It turned out to be another nice day in Rochester. The temperature was about 70 degrees. The grass is green (finally) and most of the trees have leaves.

With no hospital appointment today we both felt a little strange. It was if we were having withdrawal symptoms.

Jackie continues to struggle with nausea and appetite. She is taking a lot of meds for the nausea. This, in turn, makes her sleepy. This adds to her low energy level. Today started out like most of the days lately. She started the day by feeling lousy but improved as the day progressed. She is still having a hard time eating anything or keeping what she eats down.

Tomorrow we return to the hospital for our usual appointment. I assume they will place us on a 3 or 4 time per week hospital visit/test schedule. In another week or so we I think we will graduate to a visits away from the hospital and back to either the transplant center office or doctor's office

As the day was nice, we took about a 2 hour drive around the area. There are a lot a pretty areas around the area if you know where to look. We drove to a local river. It isn't very wide but there were a lot of boats out and enjoying the nice weather. I don't think anybody was in the water, however. It is still too cold.

Until later,

Bruce and Jackie
From Rochester, MN

Saturday, May 06, 2006

Saturday +24 (11:00 AM) Graduation Soon

We just returned from the morning IV antibiotic treatment. That will be out last IV treatment! Unless she develops a fever (which is still quite possible) or there is some other problem she will revert to her oral antibiotics.

Today she is far less shaky. Her back pain is better - although still there. Her energy level is low, but better. She is still having trouble with nausea and some vomiting. Even after taking some anti-nausea meds this morning she had a short bout of nausea with minor vomiting. I think her appetite is improving. This morning she was able to eat Raisin Bran cereal with milk and said, "It wasn't too bad."

As part of the improved status we have been given a day of freedom. We don't have to return to the hospital until Monday morning at 8:00 AM. This morning they mentioned we are about to be paroled back to a clinic routine. What does this mean? It means we will not make our daily trips to the hospital, but rather regular visits to see the doctor in the clinic. At first it will be probably be a doctor's visit every day or two. It will then stretch out to once every 3 or 4 days and then maybe once per week. They want us to remain close in case of any unexpected difficulties. I don't think they will allow a return home until at least 100 days and she has her central line removed. We now have a good idea how convicts feel when they are about to be paroled to a halfway house!

Jackie's counts still continue to fluctuate. Her RBC count is 9.4 today (down fro 10.5 yesterday). Based upon her energy level I would have expected this to be higher. Her WBC count has improved to 4.2. This is really good news since it shows that yesterday's number of 4.0 is not an anomaly! Her platelet count is still trending lower. Today it was 62. I'm not sure why it is lower, but it should recover over time.

As the WBC count rises we will begin to see more GvHD problems. So far there is nothing other than has been reported but it is likely something will happen on this front. It will likely start as a rash on the palms or soles of the feet. With luck, this will not become a major problem and management will be easily handled through the regulation of the anti-rejection drugs.

Today is a great Spring day. The sun is shining and the temperature is expected to be as high as 65 degrees. The tulips are still in full bloom. If Jackie feels up to it I think we will go for a car ride around the area.

So, with the change in the Jackie's status I will only be updating the blog once a day. Of course, if something changes I will update as needed. The change will allow me to pursue my next big news story, "If we have global warming why is it so cold in Minnesota?" :) If I can find Kennedy I think I'll ask him:)

Until later,

Bruce and Jackie
From Rochester, MN

Friday, May 05, 2006

Friday +23 (11:15 PM)

We just completed our 10:00 PM IV treatment. Jackie continued to have a little problem with nausea and vomiting tonight. It wasn't bad, but she isn't able to retain much in the way of food or liquids. I think there might be a glimmer of improvement. Today she asked for, and received, a Taco Bell bean burrito. Tonight she opened a new bag of Dorritos and ate a few. I'm not certain....but I think that 29 year old male donor MIGHT have been Hispanic :)

Jackie definitely has an improved energy level. I think over the next several days we will see more improvement in her general well being and ability to maintain her food and liquid intake.

We are watching a small spot on the exit site of her central line. We don't think it is an area for concern, but we are keeping a close eye on it. Tonight it seemed a little "white". There is no obvious sign of infection or soreness but this is a common site for infection. Given the level of antibiotics she is taking it would be hard for anything to grow. Her neutrophils have also moved to a more acceptable level which helps in fighting any small opportunistic infections.

While watching the 10:00 news in the hospital I learned that the Mayo Clinic will soon have a semi-famous patient. Patrick Kennedy, son of Ted Kennedy, will be coming here to fight his addition to pain pills. It seems he wrecked his car last night at 3:00 AM in Washington, DC. Some of the police officers involved said he "smelled of alcohol" and supervisors were called. From what I gather he is claiming he doesn't remember a thing. He does remember that no alcohol was involved even though he had just left a bar prior to the crash. The waitress says he was drinking. It seems to me he and his father have a lot in common?

So why is he coming to the Mayo Clinic? Is it because the addiction center is one of the best? I don't think so. The nurses here tell me a large part of the Mayo addiction center was closed a year or so ago. No, I think it is because the only news outlet her in Rochester is a mediocre newspaper and a TV station that puts out news broadcasts that look like they were meant for an iPod. Of course this trusty reporter has his favorite camcorder in hand and will be happy to bring you up to date with the latest Kennedy sightings. For all my "Rush Limbaugh is too liberal for me" Republican friends I'll be certain to ask the hard-hitting questions and bring answers to those question you might want to ask :)

In case any of you missed my Emmy-award-winning, hard-hitting news broadcasts they can be found on

The specific link for "The Beatles sing U2's Vertigo" is:

The specific link for "Helicopters: The Danger Zone" is:

You will need to cut and paste the links into your browser. Obviously I've had a little too much time on my hands lately:)

This weekend is supposed to be nice. If Jackie is feeling well enough we plan to take another ride around the area.

Until later,

Bruce and Jackie
From Rochester, MN

Friday +23 (6:15 PM)

I'm a little late getting this post in today. After the afternoon IV antibiotics infusion Jackie wanted to go for a short car drive. So we drove around the back streets of Rochester. Along the way she saw a Taco Bell and though that a bean burrito might be good so we picked one up. Upon return to the apartment she was able to consume about 1/2 the burrito. Food still has no taste for her. Absolutely everything tastes bad. I couldn't even tempt her with one of her favorites, angle food cake. The docs still think it may be a couple of weeks before it gets better.

She had one bout with nausea and vomiting this afternoon. I think until her appetite improves we will put her back on a schedule of anti-nausea meds. That will allow us to stay ahead of the problem. The last few days have seen us in a reactive mode to the nausea. Other than the single bout of nausea she felt better this afternoon. At present she is doing quite well.

Jackie's blood counts improved dramatically from yesterday in a couple of areas. Her RBC was 10.5 up from 9.4 and 10.4 in the prior days. Her WBC count is up to 4.6 from 2.4 and 2.0 in prior days. I want to see tomorrow's numbers before I declare the 4.6 correct. It looks like an anomaly to me, but we will see. With the WBC count at 4.6 her neutrophil level is 1.12 up from 1.0 yesterday. If the 4.6 number is incorrect the neutrophil number may also be incorrect. Jackie's platelets have risen to 97 from 74 yesterday.

All-in-all she is doing well today. So far all the appointments have been made without the use of the wheelchair in any form or fashion. We will do another late night antibiotic treatment tonight at 10:00 PM. With some luck we will be able to discontinue the IV antibiotics this weekend. The weather is supposed to be nice this weekend so perhaps I can get her back into the car for another ride.

Until later,

Bruce and Jackie
From Rochester, MN

Friday +23 (9:45 AM)

Jackie is doing well this morning. She is still very unsteady with little energy but she was able to walk to the appointment this morning.

I don't have her blood counts yet, but they will be available by the 2:00 appointment. She is getting a 1/2 unit of fluids. I'm not certain why? She seems to be well hydrated.

The current plan is to remove her from the IV antibiotics this weekend if all goes well.

It turns out that her lung/chest X-ray showed a small area of her lung that was compressed. They want her to try and cough and take a series of deep breaths to put it back in order. It was nothing too serious.

The nutritionist was in this morning and talked to Jackie about eating more solid foods. She probably won't have much of an appetite for at least another 2 or 3 weeks. At that time her taste buds will have rejuvenated.

The doctor commented that her CT scan showed a marked reduction in lymph node size. This is a very good indication her CLL is being eradicated. CLL cells tend to congregate and hide in the lymphatic system. Actually excess cells are being stored there. That is why the lymph nodes swell. The swelling can cause discomfort in many areas. Jackie's nodes were swollen to the point that they were causing difficulty in breathing. In time the lymph nodes should be free of all CLL cells.

Until later,

Bruce and Jackie
From Rochester, MN

Thursday, May 04, 2006

Thursday +22 (11:00 PM)

We just returned from the hospital for Jackie's 3rd antibiotic treatment. Today she is much improved over yesterday. She was able to walk to each of our doctor's visits and hospital visits on her own. The final trip this evening was made without the use of the wheelchair to steady her. She still needed to hold onto my arm, but she made the trip reasonably well.

Although it was cool outside (in the low 50s) she is cold much of the time. I suppose it is because of her low blood counts. She needed a light jacket as well as a ski jacket with hood to remain warm enough for the trip.

She still some problems with nausea. It comes on quickly and without warning. Tonight she vomited with almost no warning. We have learned to keep a receptacle nearby at all times. I also carry Compazine with me at all times. She really hasn't made it past the point where she requires constant care. She is still unable to understand and account for the myriad drugs that are required on an up to 3 time a day basis. She is keeping her own food log but it isn't always accurate. The various drugs often make her feel as if she is in a fog. She cannot read for this reason. The words just don't register. She also has difficulty in writing. Partially due to the tremulous but also because she cannot think clearly enough. For the very few of you who have spoken to her on the phone I'm sure you've noticed the change. Of course this is all temporary and will resolve as time goes by and dosages are reduced.

All-in-all it was a much better day. I think as her counts improve and as days go by things will get gradually better.

Until later,

Bruce and Jackie
From Rochester, MN

Thursday +21 (2:45 PM)

I just finished speaking to the PA about Jackie's CT scan. She has had improvement in her lungs with regard to some small nodule formations that were seen on the last scan. She does have a small "ground-glass" occlusions. This would indicate a small amount of infection. At this point it is nothing to be concerned with and there will be no change to her treatment. In fact, if her body temperature continues to hold at below-threshold levels of 101.3 they will likely take her off IV antibiotics this weekend. They will take another chest X-ray today. If they can monitor the infection via X-ray they won't do another CT scan.

Jackie also has a tiny amount of fluid around her heart in the pericardial sack. Again, this is not a cause for concern at this point. They will monitor the situation to make certain it does not worsen.

Jackie is getting a unit of fluids today. The primary reason is they performed the CT scan "with contrast" which means a dye was used. They want to flush the dye from her system. Since she isn't eating or drinking normally they elected to giver her a unit.

Her counts are both up and down. Her RBC count is 9.4 which is down from 10.4 yesterday. Her WBC count is 2.4 which is up from 2.0 yesterday. Her neutrophils have improved from 700 to 1000. Her platelets have dropped to 74 from 101 yesterday. They've decided the 163 platelet count from a week or so ago was an anomaly.

Overall her condition is improved today. She has been more active and her energy level is improved. She was able to walk to the hospital this afternoon without need of the wheelchair.

We return this evening for the 3rd round of IV antibiotics. It is scheduled for after 10:00PM. This allows for a complete viewing of the TV show ER - the place I received my training as a part-time doc:)

Until later,

Bruce and Jackie
From Rochester, MN

Thursday +22 (11:00 AM)

Spring in Minnesota? I don't think so! It is supposed to freeze tonight. Other than that, it is a beautiful sunny cool day. Highs for the next week will be in the 50s.

We completed the CT scan this morning as well as the morning IV antibiotic treatment.

Jackie has a little more energy today. She was able to complete the walk from the IV treatment back to the apartment without the use of the wheelchair. She continues to have back pain. At times it is somewhat severe. She has been ranking it as an 8 on the 1-10 pain scale (with 1 minor pain and 10 the worst you ever experienced). She needed some Oxycodone this morning to help deal with it. This may be the reason for the extra energy. Unlike most people, the opiate-type drugs tend to make her hyperactive rather than lethargic.

Today her tremulous (shaking) is much better. They are going to do a cyclosporine level today. They check the levels each Tuesday and Thursday. It is possible that it has risen above normal levels and will need to be reduced. I've done a lot of reading on the side effects of both cyclosporine and mycophenolate the two anti-rejection drugs she is taking. Both drugs can cause many of the symptoms she is experiencing. The good news is that most of the problems will resolve when the drug dosage is reduced as she progresses.

Her eyes are more-or-less back to normal. I'm not certain if it was due to the expensive eye drops or the problem simply resolved by itself. In either case, we will continue the expensive eye drops. We bought 'em, so we'll use 'em!

Her rash also seems to have mostly resolved with no major signs of relapse.

Her fevers have also subsided with only a very low-grade and occasional problem. Most of the time she is running temperature below 100 degrees.

This afternoon we will get the results of this morning's CT scan as well as blood results. I'll post them as they become available. Again, this illustrates how organized they are here at the Mayo. The CT scan was completed about 9:00 this morning. I would almost bet the results are already available to the doctors online at 11:00. I'm absolutely positive the blood work that was drawn at 9:30 would already be available. At most other places the results wouldn't be available for days on the CT scan and next-day on blood work. The results are available to every doctor and every nurse within the system as soon as they are completed. One doctor can look at another doctor's work and notes and can examine any test result. They can even look at the pharmacy reports to see what meds have been ordered, picked up, changed, etc.

Now if I could just get them to do something about their food.... All I can figure is the Mayo Brothers must have been skinny doctors!

Until later,

Bruce and Jackie
From Rochester, MN

Wednesday, May 03, 2006

Wednesday +21 (10:30 PM)

Once again we finished up the late night antibiotic treatment about 10:00 tonight. Jackie felt a little better during the evening hours. She still did not have the energy to walk any of the distance to the hospital appointments.

Her eyes have improved a great deal. I'm not sure why, maybe it was the $40 tiny bottle of eye drops? Her rash was also much better today. Even her back pain had eased.

I did some research on the various drugs she is taking. I think her shaky tremulous is related to the anti rejection drugs. Both cyclosporine and mycophenolate can cause this. Side effects also could be causing her altered mental state. She is hazy some of the time. The good news is that these side effects all go away as dosages are reduced. Blood levels are checked twice per week for cyclosporine and once per week for mycophenolate.

I spoke with the man who's wife underwent her second transplant a couple of days ago this evening. He told me she is really having a rough time. She hasn't eaten anything in 14 days and is receiving IV nutrition. I'm fairly certain she has been inpatient for about 35 days. They certainly hope the second transplant will do better than the first. They think during her first transplant they failed to get enough donor cells infused. She was also in very poor physical condition going into the transplant. They were unable to get her into a good remission status. She also has a far more serious set of conditions than Jackie. It seems this is often the case for people here. Jackie's disease (CLL) while serious, is far less serious than many of the diseases we see here in the stem cell transplant patients.

I guess the point is that no matter how bad you think you are...there are people in worse condition!

Well off to bed early. We have a 7:00 AM CT scan appointment. That means getting up at about 5:45.

Until later,

Bruce and Jackie
From Rochester, MN

Wednesday +21 (3:15 PM)

Jackie continues to feel badly. In spite of good blood counts she has no energy. She has slept a good part of the day. She is unable to eat anything and she has fairly intense pain in her back and front mid-line stomach area. In my opinion it may be the start of some GvHD in the GI tract. Of course I'm not a doctor. I only play one on a blog on the Internet.

They are going to do a CT scan at 7:00 in the morning. Maybe it will give some type of indication as to what the problem might be. If it is GvHD that won't show up in the scan, however.

She continues to do well and doesn't have any serious fevers. Her eyes seem to be much better and her rash is also better. Even her hearing seems to be improving.

Her blood counts have improved once again. Her RBC count is 10.4 - about the same as yesterday. Her WBC count has moved up to 2.0 from 1.7 yesterday. Her platelets dropped a bit to 101, but this is still good for her.

We return tonight at 9:00 PM for the third daily antibiotics treatment.

Until later,

Bruce and Jackie
From Rochester, MN

Wednesday +21 (11:00 AM) Up and Down

Yes, what a difference 24 hours makes. Sometimes it doesn't even take 24 hours; today is was only 12.

Jackie went to bed feeling reasonably well. This morning she could barely crawl out of bed. She couldn't even walk out of the apartment. She had to ride in the wheelchair. She is very shaky and unsteady on her feet. She is light-headed and somewhat dazed. Right now she is sleeping. She has not been able to take any of her medications this morning and has had both diarrhea and nausea. What's the cause?

Nobody knows. It could be a result of a narcotics hangover from yesterday. She was having a lot of back pain and took a lot of Oxycodone. That's a possibility. Other than that there are no real answers. All her vital signs are good. Blood pressure is normal. Blood/Oxygen is OK. Her eyes are better. Her rash is much better. Even her temperature is normal. For now, it seems we have once again gotten past the "fever" stage.

I don't have blood counts, but I know they have all increased. The doc this morning had some of the latest counts, but not all of them, and I forgot to get them before leaving the hospital. I'll get them this afternoon. I do know her WBC count was 2.0, an increase from yesterday.

They will do another CT scan this week. They do these on a regular basis to monitor any changes that might take place. They are able to see and measure the major lymph nodes. Since the lymph nodes harbor the CLL cells it is a good way to determine how many CLL cells still reside inside her body. Due to chemo, radiation, and transplant these have shrunk to nearly normal. The reason a stem cell transplant works is due to the fact the cells flow throughout the body and hunt down the CLL cells and kill them off. Well, it isn't actually the stem cells...but the cells that are produced as a result of the stem cells being infused. The actual explanation gets pretty technical and deals with Killer T-cells, etc. The point is the cells travel to all parts of the body and act like a super-duper-chemo treatment.

I suppose we will just have to wait and see what the next 12 hours brings.

Until later,

Bruce and Jackie
From Rochester, MN

Tuesday, May 02, 2006

Tuesday +20 (11:45 PM) What a difference 24 hours makes!

What a difference 24 hours makes. Jackie is feeling much better. We completed our journey to the hospital for her final antibiotic treatment at about 10:45 PM this evening. She was able to keep us with my walking pace without much difficulty. Yesterday she could hardly crawl to the wheelchair. My guess is that her blood counts will show a significant rise tomorrow.

Her back is still bothering her and she still has the rash, but the fevers have almost totally subsided. She has had no Tylenol today. Diarrhea is gone, although she still has occasional bouts with nausea. Tonight she vomited once. It was probably due to the large number of pills she took at one time. We try to split them up throughout the day but with in excess of 40 pills you can only do so much.

I've had a few people send emails and ask questions about the woman that I mentioned about a week ago that had not engrafted. I haven't been able to provide an answer until tonight. It seemed she (and her husband) disappeared from the transplant floor. To be honest, I was afraid the worst had happened. That wasn't the case, however. I ran into her husband as he was leaving the hospital and he told me they performed another transplant today. Of course, they are hoping for the best. This lady has been as sick as Jackie was at her very worst for something like 35 days. So, in spite of all the problems Jackie has faced she has actually been very fortunate. Of course that's easy for me to say!

The post to the blog below has nothing to do with Jackie's situation. It covers some observations I've had about the drug and coffee industries. You may wish to skip it.

Until Later,

Bruce and Jackie
From Rochester, MN

Tuesday +20 (11:15 PM) Nothing to do with Jackie

Ok, this post really has nothing to do with Jackie. It is just an observation about the medical field. So if you are only interested in Jackie's condition you can skip this.

Mr. McGuire: I want to say one word to you. Just one word.
Benjamin: Yes, sir.
Mr. McGuire: Are you listening?
Benjamin: Yes, I am.
Mr. McGuire: Plastics.

Plastics, that's the word Mr. McGuire uttered to Benjamin in the 1960s movie, "The Graduate". Benjamin had just graduated from college and was looking for a lifetime career. In between his college graduation and moving into his final career choice he has an affair with the married, and much older, Mrs. Robinson. After my experiences with the medical profession I thought if I were to give advice to someone just graduating from college I might have just one word to say to them.

Are you listening?

Yes, I am.


It seemed a natural choice. Just as plastics were the future of America in the 1960s, drugs seem to be the future given all the aging baby boomers in the new millennia. For example, today I paid a $40 copay for a tiny bottle of eye drops. Of course this is probably reasonable. I'm certain billions of dollars were spent for research. Tens or hundreds of millions of dollars are spent each year for advertising these little miracles. The manufacture of such a crucial substance probably requires a factory the size of a shopping mall. Drugs would seem to be the perfect choice for a young person. Right?

Well after serious study I've concluded the single word of advice I might give to a college graduate wouldn't be: Drugs.


Are you listening?

Yes, I am.


I came to this conclusion by observing the inner workings of the pharmacy here at the Mayo Clinic and the Starbucks across the street. When you go to the pharmacy there is rarely a line. Of course they have (and I counted the names on the wall) 52 pharmacists on staff from 8:00-5:00. Each pharmacist probably makes $150,000 per year. Starbucks always has a line to get coffee. They have 4 people. I think they are making about $8 per hour. The manager probably makes more.

Looking at the situation, I find that the costs associated for the development of coffee were incurred hundreds (if not thousands) of years ago. I'm not sure about IRS accounting rules for coffee research and development, but I think the costs have already been either expensed or amortized. Of course the IRS has some crazy rules and that might not be the case. More research is needed.

Advertising costs would seem to be lower for Starbucks. Why? Because I don't think they advertise. The only form of advertising I see is a small green sign with a goofy logo in the windows. They do invest in a large green sign for most locations that simply says, "Starbucks". Most of their advertising comes from opening up to 5 new stores every day.

In the case of drugs it is necessary to produce the drug in a giant factory, sell it to a distributor, sell it to a pharmacy, collect a little bit of money from the customer in the form of an insurance copay and then hope you can collect the major amount of money from a reluctant insurance company.

At Starbucks I pay cash. They import their own coffee and there is no wholesaler.

Now one might think that expensive drugs costing in the dozens or hundreds of dollars might be more profitable than coffee. I don't think so. My Mocha Frap Venti costs about $5.00 (I don't usually tip). I'm not certain, but if I were going to take bets I would bet the plastic cup costs more than the coffee. Last year Starbucks bought 312 million pounds of coffee from 28 countries. It is very likely they get a good deal on their coffee.

How much do drugs cost? Nobody knows for certain. Well, I suppose the drug companies and insurance companies know but they won't tell anyone. It is kind of like finding out what might be a fair price on a new car. Somebody knows what this price might be, but they ain't gonna tell ya! My guess is that by the time you add in research costs, advertising costs, distribution costs, etc. the cost of producing drugs is actually kind of high and the prices we pay really aren't out of line. I can't, in all good conscience, say that Starbuck's prices are fair. Common sense says that $5 for a cup of coffee is a little out of line.

Now if Starbucks is buying 312 million pounds of coffee they have to be buying lots of plastic. I couldn't find out exactly how much, but we know it has to be a lot.

So...maybe the advice in the 1960s: Plastics wasn't such bad advice after all. Especially if Benjamin landed the Starbucks account. But just between us I think I'll stick with my advice of...

Are you listening?

Yes, I am!