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.

Tuesday, November 22, 2005

Tuesday night update

Jackie was able to complete her treatment today. It lasted about 5 hours. I spent the afternoon trying to get the insurance company to OK a new, somewhat exotic (and expensive) drug; Neulasta. This stuff retails for $6000 per shot. She had one shot while in the hospital and the doctor wanted her to take a shot upon return to OK. The doctor in OK wanted to wait until Friday because they needed 48 hours to get a clearance from the insurance company. Everyone at the insurance agency goes home at 5:00 (it seems) so it was a real battle. In the end the Mayo let me take the syringe after making me sign a promissory note for the cost. At this point I have no idea if this will be covered????

Tonight Jackie is feeling pretty bad. It will be a long trip home tomorrow given the way she feels tonight.

Until later...


Tuesday morning update from doctors

Jackie and I visited with the doctors at length this morning. We spent over an hour with Dr. Hogan the transplant specialist and 30 minutes or so with Dr. Zent the hematologist.

Jackies blood numbers are, for the most part, good. She has improved in nearly every field with the exception of platelets. They were 10 today. They are not sure why this is happening, but they will be changing her chemo treatment to better try and manage the situation. They will give her the normal chemo session today but she will be taking Rituxan, the monoclonal antibody drug every Tuesday in Tulsa for the next two weeks. The hope is that this will further reduce her CLL count in her marrow and allow more platelets to form.

They want to begin the donor type matching ASAP. I get the feeling they want to begin a transplant procedure sooner, rather than later. We will first type and crossmatch Laura Lindsey to see if she is a possible donor. After that it may be necessary to have a donor drive to come up with as many candidates as possible. We'll know more in the coming weeks.

We still plan on leaving tomorrow and being in OK for Thanksgiving.

Until later....


Thursday, November 17, 2005

Thursday Morning

As Ruth Lapidus said in her comments, "No news is good news." That was certainly the case yesterday. Jackie felt very good. She cleaned house, paid bills, and seemed normal in all respects!

Monday we leave for treatment #2. The temperature in Rochester this morning was 9 degrees. Brrr.

I'm uploading a very bad photo of a very beautiful flower arrangement sent by Mr. and Mrs. Chao-Chyuan Shih. It certainly brightened her day!

Until Later.... Bruce and Jackie

Tuesday, November 15, 2005

Tuesday Night

Not much to report. Jackie felt well today. She was able to cut her Prednisone dosage and that improved some of her heat flash symptoms.

Both of us are just enjoying our stay in OK. I can't say either of us are looking forward to returning to Rochester and the snow that must now be waiting for our return!

Until Later...

Bruce and Jackie

Monday, November 14, 2005

Monday Night (late)

Well, we arrived in Pryor just a short time ago. No delays, no problems. We will be back in Rochester in just a few days, however. We return on Monday for chemo on Tuesday and return to Pryor (if all goes well) on Wednesday. This will be repeated every 3 weeks.

Jackie's platelets were 26 much improved. Her neutraphils were about normal (2600) and her hemoglobin was 12.2. Also normal. Her WBC (white blood cell count) was about 30,000 which is too high. Hopefully more treatments will lower this. All-in-all she is doing OK. She did have a slight temperature which was unexplained.

In all, we are glad to be home if even for just a few days.

Until Later....
Bruce & Jackie

Monday update

released by dr to go back to pryor. return next monday. chemo tues. return pryor if ok on wed next wk.

bruce via mobile
headed for airport

Sunday, November 13, 2005

Sunday Night

Today dawned cloudy with high winds and cold, driving rain with small amounts of sleet.

We started the day off by going to the city flea market located inside the Civic Center. It cost $1 to get in and we found a surprising number of vendors. The only purchase....fudge and banana bread cake.

We had a late breakfast/early dinner at the Dutch Pankoeken House. Note to Stanley: We highly recommend the apple pankoeken. It is a sort of pastry crepe with apples and cinnamon inside.

We drove around for a bit and ended up spending the afternoon at the hotel. The sun finally came out and the day was bright and clear (but cold)

We had dinner at the Broadstreet Cafe. Note to Stanley: If you haven't ever tried this one it's a MUST! Their specialty is desert. The food was VERY good. you can probably guess Jackie is feeling good. We are both eating like horses. She has an early morning CBC blood test tomorrow and an appointment with the doctor at 1:30. If all goes well we will be back in Pryor either tomorrow night (if we can get a seat on the last flight out) or sometime Tuesday.

Until Later...

Bruce & Jackie

Saturday, November 12, 2005

Saturday Night Update

From Bruce:

Just a quick update to let everyone know Jackie is still feeling well.

We drove to the Twin Cities area today and went by the Mall of America. On the way back, we stopped at a little antique store and Jackie found an antique double-strand pearl necklace at a great price.

We finished up the evening with a great dinner at the Chardonnay restaurant (suggested by Stanley and Ruth Lapidus and Dr. Olsen from Tulsa).

From Jackie:

Hello out there to all you. I just want to say how very much I appreciate the love and support from each of you at home. I can't even begin to tell you how much it means to me to know I have your prayers. I have been taken care of like a babe in a cradle because of your prayers. I feel like the luckiest person in the world to have so many friends and family that are the cream of the crop of the human race. Gosh..... how does one person get so many good people like you guys????

Your phone calls have been great. It is refreshing to hear your voices. By the way Terri Graves has a direct line to God she tells me and I think she has me on line one and holding. It is working so if anybody gets a busy signal I will be glad to share a conference call but sorry I won't disconnect. Ha! By the way fyi it is a "Nationwide Plan" with no penalties or surcharges. Text messages are obsolete...they say a guy named "Moses" was the last dude to use that method. The new way seems to be voice recognition only. Well I think you get the picture you are a pretty savvy group.

Bruce mentioned I got a deal on a strand of pearls. I am telling you GIRLS they are gorgeous. I paid a whopping $4.27 for them. Of course we aren't sure they are real but the clasp says Sterling silver and they are definitely old...probably antique costume jewelry. They will be cataloged and added to the family estate jewelry but are available to anyone to check out for loan. HA!!!!

Now comes the time I have to brag a little on my husband. He has been my "knight in shining armor" for years. Although at times he has ridden in on a jack ass instead of a white horse (if you are married you know what I mean) I have only seen the White Horse lately. He has been a trooper. I would walk to the end of the earth with this guy! Not to mention he does the laundry...even has learned the skill of separation of whites and darks. When I explained it was a lot like segregation he picked it up rather quickly. He also knows the laundry rule of "one pink sock in a white load can rock ones world."

I guess I am off to bed. I need to figure out how to send this before the "Blog Nazi" catches me. Keep the prayers coming and I love you all. I am looking forward to Thanksgiving and oh what thanks I have to give this year. Hope to see everyone soon in Pryor Creek if not I will pay for turkey dinner in Rochester for anyone who shows up!

Love you all and God bless each of you.

Friday, November 11, 2005

Friday Night Ooomm Paaa Paaah

Here you see a picture of Jackie jumping for joy. Now some of you might think this was because she was released from the hospital. But that's not the case! You see...she is jumping for joy because she had JUST learned that a 2 day Polka festival would take place here in Rochester. And the best news of all???? It was taking place RIGHT HERE in the hotel!!! That's right... a full-fledged Polka convention is taking place right here in our hotel as well as the one across the street. All three ballrooms in this hotel are filled with the festive air of the ooomm paaa paaah of the accordion!

It gets better! Jackie needed to run downstairs to the pharmacy to get a couple of items. Coming back up the elevator she ran into Olga and Sven Stuajhaven (of the world renowned Polka Kings Band)! For those that may not remember, Sven is the DRUMMER! She EVEN helped Olga and Sven get the drum setup off the elevator on the second floor. Jackie says Sven is STILL going strong at 85 and Ogla doesn't look a day over 75!

Now...this is important! Don't let this leak out....but a VERY famous guest is rumored to be staying in OUR hotel! Rumor has it that "Weird" Al Yankovich is staying here and will make an UNANNOUNCED visit to the Polka Festival. Wow! Life DOES NOT get any better than THIS!

Well...I've got to go. We just came up from the second floor ballroom and actually got to see Sven work his magic on the snare drum! The accordion music is filling the hallways. The smell of Old Spice and Geritol permeates the entire hotel. I'm not sure if we take this level of excitement for long!

The second pic is of Sven and the Polka Kings IN ACTION! You can just barely make out Sven in the background. He's the younger-looking guy in the band and the one with a litle bit of hair.

Until later....

Bruce AND Jackie
from the Rochester Fall Polka Festival ... of course this is just a joke. But they are having a major Polka festival and Jackie DID help the old man drummer off the elevator. He WAS about 85 and VERY proud of the fact that he would be playing until midnight! And "Weird" Al Yankovick? Well...he's probably still weird and not within a 1000 miles of this place. BTW, Al's father (I believe) was actually a famous Polka bank leader and that's where Al learned to play the accordion.
"Jackie...where's my lederhosen?"

We're Out!

We just walked into the hotel room. We have a doctors appointment on Monday (after an early morning CBC). If all is well we will be headed home on Monday or Tuesday.

Bruce AND Jackie

Great News...Bustin' Out...Grrr & Brrr

Ok...we're bustin' outa this joint! It seems yesterday's test and results was given to us incorrectly. Jackie's neutraphil count is actually 4000 today. Grrr...Remember she only needed 500 to escape this prison!

Her platelet count is still a 12, but they feel this is a result of her platelet transfusion and will move upward. We have a doctor's appointment with Dr. Zent on Monday and then we should be free to head home for a WHOLE week!

She will need to return for another treatment in about 10 days. They don't think she will be quite as Problematic on future treatments. Naturally she is thrilled!

I suppose the bad news is that we are spending another weekend in beautiful Rochester - and it is starting to get cold! Brrr....

Until Later....

Good News?

Well, the news is up and down. Today is up. It seems Jackie's neutraphil count is back to 399. It needs to be over 500 for them to release her - they've said. However they are talking about releasing her today anyway. So what was yesterday's zero test? We don't know if the test was defective or if her count was actually zero. I would guess defective test. She went from 342 to 0 to 399.

Her platelets have dropped to 12, however. Of course this is low, but they feel this should rebound quickly??? So maybe yesterday's news wasn't really so bad after all.

I'll try to keep everyone posted.


Thursday, November 10, 2005

Thursday Night

Jackie is feeling well. To talk to her (as many of you have) you would never know there is anything wrong with her. Her spirits are as good as can be expected. She has been up and down several times now and it is upsetting. She has resigned herself to the fact that she will be here until things are right. At this point we have no idea of when she might be able to leave. It could be a few days, it could be another week.

They will do another blood test at 4:00 AM tomorrow morning. We usually have results by 10 or 11:00 AM. Hopefully tomorrow will bring better news. The literature says that blood counts reach their lowest levels 10-14 days after chemo. Today was the 11th day.

I'll keep everyone posted....


Not coming home tomorrow

It seems we may not be leaving tomorrow. We just got Jackie's latest CBC counts. Her neutraphils have dropped to 0 from 342 yesterday. This places her at risk for infections,etc.

Her hemoglobin has dropped a bit to 9.9 from 12.2. White count at 15.7 (good) from 17. Platelets at 18 from 12 (better).

Obviously she is disappointed!

Bruce by mobile

Thursday Noon

It looks like tomorrow before release. The docs want her neutraphils to be above 500 and normal temperature for at least 24 hours after stoppage of IV antibiotics.

Bruce by mobile phone

Thursday Morning

Just a very quick note to let everyone know that Jackie is feeling very good this morning. Her platelet count is 18. They have her down as a possible discharge patient for today. I'll keep you posted...

Until Later.

Wednesday, November 09, 2005

Wedneday Evening

Jackie ended up having a good day. She felt very well and she ran no fever for most of the day. She did run a 1 degree fever a few hours after her platelet transfusion, but this is probably normal for her. She has always run a slight temperature after a platelet transfusion. It is probably part of her autoimmune response. At 8:00 PM this evening she actually had a 1 degree below normal temperature.

I managed to snap this picture amidst many complaints! No not fixed. You can probably visualize the conversation.

She is still somewhat neutropenic (susceptible to infection, colds, fever, etc). To increase her neutraphils they gave her an injection of Neupogen. This is one of the somewhat newer drugs (FDA approved 1998) that has helped a great deal with cancer treatment. It is a "growth" type drug that promotes increases in the various types of blood cells. Her white cell count has begun to decrease as a result of the chemo. This is a good sign. CLL is typically characterized by a runaway white blood cell count. In the past her WBC count has been as high as 135,000 (in June). Normal is 5-10,000. Prior to chemo it was about 70,000. Just after chemo it was 23,000. I believe today's WBC count was 17,000.

She received phone calls from many of her friends today. She asked me to thank everyone for thinking of her. I won't even attempt to list the calls! I'll just say thanks!

The docs still think she will be released about Friday. If blood cultures are OK and her platelets recover and appear stable I think she will be released. I don't think her platelet stability can be really be determined before Friday (my opinion).

Several people have asked me where they can get more info on CLL and her condition. One of the best sites I've found is: This site can be very technical but it also distills much of the doctorese into laymen's terms.

Well until later...


Wednesday morning update

Jackie is feeling much better today. Her C-diff tests. the bacterial bowel infection she came to the Mayo with, are all negative. Her stomach is feeling much better. She has no fever. However, her platelets have dropped back to 12. It was only a few days ago when 12 seemed like a fantastic number! That was before they hit 37.

They are going to infuse platelets to see how she reacts. They will also be giving a little Prednisone to help bring the platelets back into more positive territory. Her hemoglobin is still very good. She is a little neutropenic (she gets sick easily). They will be giving her some medicine to try and elevate her neutrophils (the stuff that kills germs and bacteria). The docs are hopeful she can leave for OK on Friday.

I had a good talk with the doctor that is currently team leader. He feels that none of what we are seeing is terribly surprising. Certainly they are treating this like an everyday occurrence. I spoke to him about the differenct types of transplants. I was a little surprised that they are not doing the most advanced type of transplant (umbilical cord stem cell) here at the Mayo. I'm not sure where they are being done, but it is something we will definitely want to look into. There are pros and cons for all the different types of transplants, but the cord stem cell procedures offer more curative results, but the danger period due to infection and graft recovery process are longer.

Again, thanks to everyone for the blog comments. I can pick these up on my mobile phone and I try to read them to Jackie every night.

Well it is off to do laundry..

Until Later...


Tuesday, November 08, 2005

Tuesday Night

Well, Jackie is feeling better tonight. She had lots of phone calls (Ruth, David and Michele, Laura) and probably several I've forgotten. She wanted me to say "thanks" for the calls.

I also read her the comments from the blog. Again, she said to say "thanks" to everyone.

The doctor says that if the tests show her fever to be due to her various medicines and not a blood infection she might be able to head home on Friday. They cultured all sorts of things and we should know more tomorrow.

For those who've never been to the Mayo the above picture is of the "subway". As mentioned earlier the subway is a series of tunnels that connect the various hotels, retail shops, and buildings. There is no train! I've been here long enough that I now find it funny when I hear someone ask, "how do I find the subway train" - just like I did on the first day we were here.

Until later....


Tuesday Update and Doctor Report

I'm sorry to say, but Jackie went back in the hospital this morning. She felt bad on Monday and was very sick this morning. They are uncertain why she is sick, but they feel she might have a blood infection. They will be giving her broad spectrum antibiotics by IV. It is also possible she is having side effects from the sudden stoppage of the Prednisone steroid and and a fever caused by one of the other medicines. They need her to be completely well before beginning her trip back to OK. Hopefully this will be in just a few days. She is really ready to get home!

The doctor received the results of Jackie's FISH test. This test give the chromosomal abnormality that exits and is what creates CLL. Jackie has an 11q chromosomal deletion? What does this mean? It puts her in a much higher risk category. A 53q deletion would have been worse a 13q deletion better. If we have 4 categories of risk the 11q is a number 2 or 3 with a 53q being a 4.

What does this mean? It means that in all probability she will require a stem cell transplant in the next year or two. A stem cell transplant is less dangerous than it once was, but still a very aggressive treatment. You receive high doses of chemo as well as moderate (it used to be high) doses of radiation. You are in strict isolation while this takes place and there can be lots of complications. This kills off all the "bad" cells and you are given a small blood-type transfusion of new stem cells. The cells then begin to make normal types of blood. Of course the entire process is more complicated than this, but you get the general idea. The good news is that for people who endure the process there is a better than 50% cure rate.

The current course of action is to continue the chemo treatments and try to get her into a stable phase. She will probably stay in a stable phase for a shorter period of time than people with, say a 13q deletion. Upon relapse they would begin the transplant. The prognosis improves for people who are younger and generally healthy. Jackie is considered very young to have this disease. Most people are in their mid to late 60s before they discover the problem.

The good news today was that much of her blood counts had returned to normal or near normal levels. Her hemoglobin has rebounded nicely. Her white count was still elevated but not nearly as bad as it was a few days ago. The elevation would be caused by an infection. Her platelets were lowered to 18 from 37 two days ago. Still good considering she has had no transfusions and no Prednisone to "prop up" the count. The doctor was pleased with the recent tests.

So...we don't know when we will be leaving Rochester. Hopefully it will be within 3-4 days. I'll keep you posted. If you wish to call her you can reach her on her cell phone at 918 530 0124. I also wanted to remind everyone to not send any flowers. They don't allow them on her floor.

Until later....


Monday, November 07, 2005

Monday Update

Well, it is a bright and beautiful day here in Rochester. Temperatures in the mid-60s.

Jackie is feeling poorly today. She stopped the Prednisone last night and the effects of the chemo are starting to kick in. Today she has flu-like symptoms and has been in bed most of the day. We did manage to get out to eat lunch at Olive Garden. After lunch she just didn't feel well enough to do anything else.

Tomorrow brings another lab test and (hopefully) her last doctor's appointment for awhile. We are hoping to fly home on Wednesday morning.

Until later....

Bruce AND Jackie

Sunday, November 06, 2005

Sunday CBC counts!

Jackie received another CBC test this morning. The test results are:

Platelets (the important one for now) 37
up from 21!

Hemoglobin 10.5
still looking good

White blood cell count 70,000
that's high! they will begin treating this on the next chemo treatment. normal is 5-10,000

Spent the day driving around and discovering more of Rochester. Went to the mall, visited the Plummer House (and old mansion) and saw the Saint Francis of Assissi Convent (from the parking lot).

Jackie is feeling well. Monday will be another "off" day for tests, etc. She will have another CBC on Tuesday morning before her appointment with Dr. Zent. We are hoping to return to Pryor early Wednesday morning.

Until later...

Bruce AND Jackie

Saturday, November 05, 2005

Saturday Night Update

Saturday was an "off" day. No blood test, no doctor's visits, etc.

We took the car and drove around Rochester and explored the city. We saw a sign for Cabellas - the big sporting goods company. We drove about 40 miles to Ottowana to see the Cabellas. I bought a couple of pair of shoes and jackie picked up some shirts.

We drove back to Rochester and finished the day by eating at Newts. We had nachos.

Tomorrow Jackie has another CBC at 10:00 AM. We'll post the results when they are known.

Until later....

Bruce AND Jackie

Friday, November 04, 2005

Friday Afternoon Test Results

Great news...we just got Jackie's latest test results. Her platelet count was 21. This is the highest it has been in about 2 months! Her hemoglobin has also increased. This means she does not require any more transfusions. Her white blood count was 40,000. Normal is about 4,000. This should come down over time as the chemo kicks in and reduces the CLL cell counts.

Her next CBC will be on Sunday morning with another (we think) on Monday morning before an Tuesday morning appointment with her doctor/hemotologist Dr. Zent.

Till later....

Bruce AND Jackie

Thursday, November 03, 2005

Busting Out Thursday Night

Ok....Jackie busted out of the hospital about 3:00 this afternoon. We went driving around Rochester this afternoon to see the sights. She even had me stopping at one of the local car dealers to shop for a new car. Tonight we enjoyed fine dining at Che Red Lobster. The drinks were superb (Bud Light for me, rasberry lemonade for her).

Tomorrow she gets a CBC test at 1:00 PM. I'll post the results when we know something.

Until later...

Bruce AND Jackie

Thursday Afternoon

Jackie is in the process of checking out of the room. It seems they will keep her "local" until at least Tuesday. That is when she sees Dr. Zent again. At that point she will be released to return home. Of course this assumes her counts look good and things are still going well. She will continue to get a CBC count every other day. We will then have the days free to see Rochester and the surrounding area.

I'll continue to keep everyone posted - by maybe only once per day.

Until Later....


Thursday Morning Rounds - Doctor Update

Ok...the docs made morning rounds and finished with Jackie about 5 minutes ago. Jackie will be released from the hospital this afternoon. Because her platelet count dropped from 17 yesterday to 11 today and her hemoglobin dropped from 10 to 8.7 they felt it best if we stayed nearby so she could be closely monitored as an outpatient. She will get a CBC every morning. If her platelet and hemoglobin drop much further they will probably give her a transfusion of whole blood to help stabilize her until her system takes over. They said that platelets usually begin to rise after 3 or 4 days and hemoglobin is somewhat longer. They feel that she should be able to return to OK early next week.

Actually they offered to let Jackie return to Oklahoma immediately if she promised to have her local doctor monitor her closely. We told them we planned to have all future treatments and follow-up handled here at the Mayo Clinic. we are going to sit around and wait for the paperwork to be completed. It appears we will be able to get out and see the local sites and enjoy some of the local food before heading back to OK.

Till later...

Thursday Morning

Well, the day dawned bright and clear again today. In many areas around Rochester the high temperature for the day record was broken yesterday. I believe the temperature was 71 degrees. It is also supposed to be nice today, but getting colder later in the week.

All-in-all Jackie feels well this morning. She was unable to sleep much last night. This is probably due to the Prednisone she is receiving. For those that know her well this will not come as much of a surprise... When I walked into the room this morning the entire room had been cleaned, her bags were packed and she was ready to leave the place at a moment's notice!

We are still awaiting the team of doctors visit. So far I haven't seen them making the rounds, so it may be later in the morning before I post an update. We still don't have the overnight results on her CBC (which we are hoping will be good). Good results on the CBC will determine if Jackie is ready for discharge.

Until later...

Wednesday, November 02, 2005

Wednesday Night

Today was fairly uneventful. After the doctors visit Jackie was elated at the thought of being released and going home soon.

We had a wonderful visit from Susan Ahlquist at noon. She brought food for both Jackie and myself. We spent almost an hour chatting about her kids, our kids, and everything in between. They have REALLY been great during our stay in Rochester!

This afternoon Jackie and I went hair shopping. The hospital has a full "wig center" that offers all types of wigs, caps, and head coverings. A good part of what they offer is free. You can also buy (probably at their cost) various wigs, hair pieces, etc. Even though Jackie only has a 50-50 chance of losing her hair we felt it best to go ahead and prepare for the possibility. She selected a wig that is almost identical in both color and style to what she already has. I really think that very few people will even notice she has lost hair. It simply looks like she changed to a slightly different cut and color.

If you are checking the blog and there are no pictures of our hair shopping experience...check back! I managed to take a couple of photos of Jackie wearing some of the pieces we did NOT select. She asked me not to post the pics...but of course she knows I will :)

We've received a lot of calls and emails. We even received one from Ruth Lapidus' sister in Israel wishing Jackie a speedy return to health.

Overall Jackie felt really well today. The good news and the prospect of going back home certainly didn't hurt. It is uncertain when they release Jackie if we will need to stay around Rochester for a few days or not. We received the impression we would be free to travel back to OK upon release. I'm sure Jackie will be required to get regular CBC checks once home to confirm her recovery. We will also need to return to Rochester every 3-4 weeks for additional treatments. This will happen 4-6 more times. So...we will be getting to see the fabulous winter weather here in the Far North it seems.

Till later...
PS. I received this link late. If anyone wishes to read about the side effects and more about the chemo used you can visit this link provided by Stanley Lapidus. Thanks Stan!

Great News Weds Doc Visit

The docs just left. Jackie's platelet count has risen to 17 in just one day. They are VERY pleased. The feel if this continues she will be discharged tomorrow. She will be free to return to OK as soon as possible.

She will continue these same type of treatments either here at the Mayo Clinic or in Tulsa for several months. She would receive a total of 4-6 treatments depending upon how she progresses.

As you can imagine Jackie is very happy! They did warn her, however, that she will begin to feel worse when the chemo kicks in and when they taper the Prednisone off.

I'll keep you posted....


Wednesday Morning

Well, the day dawned bright and clear in Rochester this morning. The temperature is supposed to be in the 70s with lots of wind.

Jackie rested well last night and is feeling well. She is still receiving IV solution (fructose). I'm not certain is probably to keep her hydrated.

We are awaiting a visit by the doctors this morning. She is hoping to be discharged so she can continue her treatment as an outpatient. I can't write much this morning due to the upcoming visit from the docs. I would like to be present when they come by.

We are also expecting a visit from Susan Ahlquist. They have been SOOOO nice! It is like having family members in Rochester!

Well, I'll try to update after the visit from the docs...


Tuesday, November 01, 2005

That's Jackie with a giant chocolate Reeses Cup I purchased in "the subway". I don't know if I mentioned this or not, but the subway is actually a group of tunnels that connect the downtown buildings in Rochester as well as the various Mayo buildings and hotels. There is a tiny underground city below the city streets. I felt kind of silly asking "where's the train" until I hear someone else today ask exactly the same thing!

The other picture shows the view outside the window. The hospital is very nice and the staff is VERY professional! The view from the window gives us a great vista of the local cement plant and seed store. Both, surprisingly busy!

Jackie finished her chemo today. She received 750 mg of Rituxan by IV, 1 mg of IV Vincristine, 1500 mg of Cytoxan by IV and 200 mg of Predisone by mouth. She got very sick during the Rituxan treatment - low blood pressure, uncontrollable shakes, nausea and vomiting. The Rituxan treatment lasted about 15 hours! After 3-4 hours the symptoms subsided and she felt fine most of the day. The Cytoxan is the most toxic of the group. On a scale of 1-4 it is about a things could be worse.

Jackie will probably begin to get ill in about 5-7 days from the Cytoxan. It kills the fast growing cells in the body. It will alter and kill the CLL cells as well as those in the gastrointestinal tract. For this reason her stomach will begin to get upset and she will likely develop sores inside her mouth. It will also be this drug that causes her to lose her hair (a 50-50 chance).

I know a lot of you don't know much about the various drugs so I am including a paragraph from Stanley Lapidus below:

"A few years ago, I looked pretty carefully at Rituxan--it was similar to a drug a Mayo doc had come up with, and I was contemplating starting a company around his discovery. Didn't work out, but not for scientific reasons. At any rate, Rituxan is really one of the miracles of biotech. For patients who respond to it (not all do), it has a profound effect."

We had a visit today from Dr. David Ahlquest. Dr. Ahlquest is a good friend of Stanley and Ruth Lapidus (Tiff's in-laws). Dr. Ahlquest and his wife have been VERY hospitable! With the help of Stanley, Ruth, Dr. Ahlquest and his wife Susan I'm afraid Jackie would still be languishing in Tulsa!

Lastly, Jackie's chemo is finished for now. It is possible she will be discharged in a day or two. She would continue to get daily CBC blood counts as an out-patient. It is possible the remaining chemo treatments that will likely follow in 3-4 week intervals could be done in Tulsa. It is also possible for her to fly her every 3 or 4 weeks for a daily chemo session. Future sessions are not likely to lead to side effects or further illness. /Still, we will likely be here another 10-12 days at a minimum. We will not have certain test results for at least a week. They also wish to monitor her progress. Given what we have seen of The Mayo...this is the place to be!

Until tomorrow....

Tuesday at 4:00

Dr. Zent came in for a visit. He was quite informative. They conducted another FISH test here at the Mayo. It seems they don't trust other's work. Once we have the results we will have a better idea of exactly which type of CLL Jackie has based upon the chromosomal abnormalities found. It will tell us about her future course of treatment. We will probably have the Tulsa FISH test tomorrow and the Mayo test in one week.

Dr. Zent says that about 5-8% of the CLL patients have Evan's Syndrome. Therefore it is somewhat rare. It is this Syndrome that causes her platelets to be destroyed. They are currently giving her Prednisone which helps supress the platelet destruction. The moniclonal antibody Rituxan should prove to be quite effective at returing her platelet count within a few weeks.

Jackie continues to feel fairly good.


Eureka! Stanley's idea works!

Stanley Lapidus suggested we smuggle food into Jackie. The food at the hospital isn't exactly great. In the little handbook provided by the hospital it said this practice was discouraged. It seems the little book is usually ignored! The nurses say it is OK to bring in anything we like. Jackie had a hot fudge yogurt sundae from TCBY. It was a real struggle to get it through the underground tunnels and into the hospital before completely melting. It seems like half the Mayo Clinic stopped me to ask, "Where do you get those?".

Jackie is still getting a chemo drip. In another hour or so she can at least take a shower. I think that will help her feel better. Once she got over the initial effects of the Rituxin treatment she seems to have done well.


Tuesday noon

The entire team of docs came in this AM to examine Jackie. They seemed to think things were going well and seemed pleased. She is scheduled for another round of chemo beginning about 3:00 PM today. They will be using Cytoxin (sp?). It is another drug used in combination with Rituxin to fight CLL.

All-in-all Jackie is feeling pretty well. She is tired and all the IVs make her look and feel like a pin cushion. Yesterday they drew 14 vials of blood. Today they drew another 6. It is no wonder they may need to transfuse more red cells!

I've located a computer in the Family Room. It is a normal PC and has a high speed connection. It sure beats trying to blog using my cell phone. Hopefully I can use it often to keep everyone updated.


Monday night and Tuesday morning

last night was rough for jackie sue. they began the chemo treatment and she got very sick. she had uncontrollable shakes, vomiting, low blood pressure. she also had no sleep. the chemo treatment lasts 15 hours. this morning she is better. she is reading and eating well. the docs tell us the reaction to the drug (Rituxan) is normal for first time treatment. I guess one might expect a wierd reaction from a drug made of mice and rat cells. by the way...jackie now has strange cravings for cheese! to cheer her up I bought a couple of lbs of chocolate including some of the biggest Reeses cups you ever saw (1/2 lb ea).

platelets back to 2. docs say this is normal.

bruce via treo