Day 223 Latest activity · Feb 19, 12:42 PM by Dale
From Dale this morning:
Had this idea to try to send you a daily update. Just the facts of what’s happening.
One week in the hospital today.
Could not eat breakfast again. Had half a cup of cranberry juice and some hot tea.
Visit from Internal Medicine doc who admitted me. Commented the rash looks better on my face.
Visit from ID intern. She precedes the regular doctor and does a simple physical – listens to heart and lungs, looks me over for new rashes, etc.
Had a PICC (peripherally inserted central catheter) line put in. My veins have been damaged by all the steroids so drawing blood and receiving meds has been pretty awful. One day we had four different people stick me 10 times before they got something to work. The PICC is similar to Mr Chuckles except it is inserted in my arm, just above the elbow and a catheter runs up my arm, through the armpit and into my chest. They prefer this over Mr. Chuckles because they don’t have to pierce the chest wall to put it in. I guess this one will be called Piccles?
Someone from x-ray came to take a picture to make sure Piccles is in the right place. I love that they do this in my bed and I don’t have to be schlepped through the hospital. Waiting on confirmation from them so we can start using the line.
My oncologist visited. Disagrees with some of the other docs on drugs they are giving me. Is going to have a conversation with Dr Champlin today to go over everything. According to the local doc, the skin biopsy was negative for GvHD – I had thought it was “inconclusive.” So now we are waiting for results of the colonoscopy that was done on Saturday to see if GvHD of the gut is present.
Started testing glucose today as the steroids I am back on have already elevated my blood pressure and blood sugar.
Think that covers today so far. And it’s only noon. Should quiet down a bit now. God bless you all.
Day 220 - Looks like GVHD again! · Feb 16, 10:35 AM by Dale
Hi Guys. It’s Chris, Dale’s husband.
They expect to confirm the biopsy results today and expect it to be GVHD of the skin. They also suspect GVHD of the gut but will not do a colonoscopy to confirm it if the skin GVHD is confirmed. The treatment is the same. If the biopsy of the skin is negative then they will do a colonoscopy.
So, back on the steroids again! You may remember she had tapered off pretty much everything in the way of steroids as well as several other meds designed to prevent GVHD. She took her final pill of Tacro on Wednesday and the symptoms began on Friday. She has several friends still on these meds even after several years after their transplants.
We are disappointed but not too terribly surprised. Fortunately, all of this is treatable and can be tolerated for a long time.
For some reason, Dale’s laptop cannot go to her blog via the wireless network at the hospital. Security I assume. As a result, I will do some of the blogs or she will email me or Patrick and we will post them.
Love to all. Please continue to keep Dale in your prayers.
Day 218 ~ Back in the Routine · Feb 14, 08:30 AM by Dale
Have to say, even though I’m in a different place, this all feels very familiar.
Chris pointed out yesterday that most people don’t know the normal ranges for the various blood counts that I report so it would be a good idea to include them in my posts every once in a while. I’m writing this too early to include today’s counts, but here are the ranges for reference:
White Blood Count (WBC) 4 – 11
Hemoglobin (HGB) 12 – 16
Platelets (Plt) 140-440
Absolute Neutrophil Count (ANC) 1.8 – 7
Yesterday included visits from several different doctors. So far none of the tests have indicated what might be causing my fevers or other symptoms. We don’t have the results of the skin biopsy or the CT scan that was done last night. I doubt that all the blood cultures are complete yet, either, as I think they like to give them a week to see what grows. So far nothing has I guess.
I used to have great veins and it never bothered me to have blood drawn or IV’s put in. Things have changed… Now each stick is an ordeal. My initial IV site began to give way so they had to find another leaving me with rather bruised arms and hands. The new site seems to be working well and is not painful. I miss Mr Chuckles!
Speaking of Mr. Chuckles… remember “Slim,” the IV pole that was with me in Houston? His counterpart here in Orlando came with a name already printed on him and I like it so I call him “Roller Bear.”
Happy Valentine’s Day to all,
Day 217 - Guess where I am · Feb 13, 09:15 AM by Dale
If you guessed that I’m back in the hospital, you are right! I was admitted to MD Anderson in Orlando today after experiencing low-grade fevers for several days. The fever started on Friday and I was sent for labs, blood cultures, chest x-rays and even MRI’s. The fever persisted through the weekend so on Monday I was to see the local doctor who chose to admit me. This is sort of déjà vu of when I was readmitted in Houston. I do hope this is not another 3-week visit! Surely it won’t be.
It’s interesting to compare the two hospitals. This one is very new – less than 5 years – and much smaller. The floor I am on is for patients with various types of cancer rather than being limited to leukemia and related diseases. The nursing staff is nice but does not have the same level of patient-oriented mindset.
And, one of the major differences, they do not have the same system for food service! In Houston it is called Room Service and patients call at any time between 6:00 a.m. and 9:30 p.m. to order anything they want from their menus. Food is brought to the rooms by a wait-staff who even dress the part. Makes the whole issue of eating much more pleasant. But here, they brought me a meal at a time of their choosing and even expected me to know yesterday what I want to eat tomorrow! I don’t work that way! Ah well, I’ll adapt.
Here are yesterday’s blood counts –
PLT 87 (yeah, dipped below that 100 level I was bragging about last week!)
I assume I’ll be getting neupogen for that absolute neutrophil count. Dr Sarriera will be in this morning and we’ll talk things over. And then I’ll try to keep the blog posted. Oh, and Dr Champlin in Houston is very much involved with what is happening here. He and his P.A. have stayed in close touch with me and with Dr Sarriera. I certainly am glad no one suggested I needed to return to Houston for this little hiccup!
Day 211 ~ Special Report · Feb 6, 05:33 PM by Dale
I got this great news today and had to share it! Tomorrow I will take my last dose of Tacrolimius, the medication I have taken since the transplant to prevent GvHD. It is an immunosuppressant – the last one I’m on.
Along with this I will now stop taking the three antibiotics that I have also been taking and stop the Pentamidine infusions that I get every three weeks.
This is exciting – I will be reducing my daily pill intake by 8 pills – but the real excitement is in the fact that I can now eat fresh fruits and vegetables! Not only does this make me happy because of the taste buds, but it also indicates that my immune system is coming back and Dr Champlin has confidence that my body can deal with the bacteria that I will come into contact with. I was cautioned to wash everything well, continue to avoid buffet lines and salad bars and use good judgment, i.e. avoiding bruised or damaged produce. The only fresh things I had in the house at the time were oranges from a friend’s tree and a box of mushrooms. I thoroughly enjoyed that juicy orange!!
Bless Chris’ heart. He has been so patient through this and has avoided salads and fresh fruit right along with me other than when he ate away from home so he was just as excited as I was! He immediately announced we need to go to the grocery store. I’ve got my list made and I’m ready to go!
P.S. I also got the ok to have fresh flowers in the house – just to “admire them from afar” not with my face right in them. I’m happy with that : )
Day 209 ~ Platelets Break 100! · Feb 5, 05:10 AM by Dale
I intended to update the website on Saturday, but it turned out to be a not-feeling-good kind of day and I spent most of it sleeping. By the time I woke up Sunday I was much better but was kept busy with church and other stuff including the Super Bowl.
Last week had some exciting lab news in that my platelets went over 100! It was very exciting to see that three-digit number. White counts and hemoglobin were also up by very small amounts so that was all good.
On Tuesday I had what may have been my final infusion of Pentamidine for my lungs and, for the first time, had a reaction to it. I became very nauseous and tingly so we stopped the infusion and I was given Zofran which is just the best for me when it comes to nausea. After about 10-minutes we were able to continue the infusion and it was all fine from there on.
Now that Mr. Chuckles is gone, labs and infusions are of course given through my veins again. I’ve never had trouble with this in the past, often bragging about how good my veins are. That seems to have changed and each event now requires multiple attempts to find a vein that will work. But overall, I’m free of the catheter every day, while the trouble finding veins is only once or twice a week. I’m ok with that!
I went to Physical Therapy three times last week. The focus is mainly on my back now. It is hard to believe, but the pain continues to worsen. I have been waiting for a call from a special department at MDACC here that is supposed to help me with this but it hasn’t come. I’m taking this into my own hands today and calling a specialist. There must be some sort of relief available to me.
That was last week in a nutshell. Social activities were pretty limited because of my back pain. The big event for the coming week is that I will take my final Tacrolimius dosage! I have had no indications at all that the taper was causing problems so this could be for real.
My hair is growing : ) It is not ready to be exposed to the world yet, but I find it interesting that it grows so unevenly. Much of it is still stubble yet much of it is also just growing like crazy with some hairs as much as an inch long. I have this vision of a nice little cap of hair lying close to my head…but these hairs appear to be more interested in wildly reaching for something rather than lying down cutely. I think I have at least a few more months of hats and wig in my future.
Day 200! - Sounds Like Another Milestone to Me! · Jan 27, 09:21 AM by Dale
I didn’t even realize this was one of those special number days! I’m getting pretty blase about this, wouldn’t you say?
In my news this week, I had an eye exam on Tuesday with a fully good report and a reminder to continue to use my eye drops to deal with the dryness that is standard post-transplant. I like those simple instructions “Use your eye drops” rather than some long explanation of what may or may not be going on and what the long term possibilities are, yada, yada!
On Thursday I had an MRI of my spine to check out the compression fractures followed by an ultrasound of my liver. Seems the liver enzymes have been running higher and higher so Dr Sarriera felt it was time to investigate.
The compression fractures are in lumbar vertebrae 1 and 2 and are chronic rather than acute. I had no idea there were chronic and/or acute fractures! At any rate, the vertebroplasty that had been discussed as treatment is not an option for chronic fractures according to Dr. Sarriera. The only relief will be from rest, pain meds and bracing. I am hoping this is not a perpetual thing but something I will only have to deal with occasionally. The last couple of days have been better than the last few weeks.
And as for the liver enzyme issues, the ultrasound showed diffused infiltration probably from the myelofibrosis or the chemo/meds that have passed through my liver over the last six+ months. (Before you ask, I have no idea what diffused infiltration refers to – I’m just reading what I wrote when the doctor called!) The good – no, make that GREAT – news is that it is not GvHD! Again, it is something they will just watch on my bi-weekly labs.
It was comforting to me when Dr Sarriera (Orlando) said he had spoken with Dr Champlin (Houston) already and they were in agreement on the results of the tests. It is nice to know they are working together.
This week I cut my dosage of Tacrolimius (also called Prograf) to one mg every other day! Woohoo! I’m on my way. I am to stay at this dosage for 2 weeks and then stop it all together. Once I stop it I will also be able to stop several other drugs I’m taking and the tri-weekly infusions I get of Pentamidine to protect my lungs and… I get to eat fresh fruits and veggies again!
I’ve spent most of my time this week helping Chris with his business where I can. We went to church on Sunday and Wednesday and then a movie last night – The Pursuit of Happyness with Will Smith and son – and loved it. Since my white counts and neutrophils are still rather low, I continue to wear masks and take precautions against germs and bacteria when I’m around other people. We should have bought stock in hand sanitizers and cleansing wipes!
Today we’re going for a ride to Mt Dora. Not truly a mountain here in central Florida : ) but a quaint little town and a nice ride. It’s a beautiful day here – 51* at 9:30 and forecast high of 71*.
Day 192 · Jan 18, 05:00 PM by Dale
A week past my 6-month re-birthday!
Life is getting back to normal more and more each day as I regain strength and stamina. My activity level is picking up. I was so pleased to get back to church, out to eat and even grocery shopping this past week! It is a cycle in that my being able to do more feeds my self-confidence level which makes me feel I CAN do more and so I push a little bit more… It’s a beautiful upward spiral.
I am on bi-weekly lab checks now with yesterday being the day
I visited the clinic and saw Dr. Sarriera. My blood counts were actually a little lower than recent results with white count at 2.4, hemoglobin at 9.9, platelets at 79 and neutrophils at 1.4. The white and neutrophil counts serve to remind me my immune system is still weak and I still must be cautious in exposing myself to the bugs that are out there. In all of my outings I have been able to separate myself from other people but still wear the high efficiency masks and gloves when appropriate.
One thing that has been a problem for me has been back pain. Since this has not been improving with physical therapy I had x-rays yesterday of my lower back. The results show that I have several compression fractures of lumbar vertebrae. At this point I’m waiting for a call from my doctor to see what this means and what we do about it. I’m totally unfamiliar with back issues! (Sounds like a magazine….) At least now I know what is causing the pain and surely someone will know how to deal with it!
I’ll continue to post as things improve around here!
Great News from Houston · Jan 6, 12:43 PM by Dale
I’ve really been eager to get to a computer to update the blog on Thursday’s results. Everything went so well!
Beginning with our flight – it was full. I believe there was only one vacant seat on the plane and the Continental gate agent was nice enough to arrange for it to be in our aisle so Chris and I had a little more room than usual. I was masked, wiped down my tray table and arm rests with antiseptic wipes, etc., and didn’t have a stranger inches from my face so I felt that was all good.
Jack drove down from Dallas and picked us up at the airport then to check in to the Best Western. It seemed a little strange to not be going to the apartment but I guess we have spent enough time in hotels here on previous visits that it wasn’t too hard to adjust to.
Before dinner, we went to the Rotary House, the hotel connected with the clinic, for labs. This saved me from a 7:00 a.m. lab appointment on Thursday and is so much nicer than the “cattle call” I feel I’m a part of at that time of day in the clinic.
So my day started with a bone marrow aspiration and biopsy at 8:30. I winced a little when I saw the little girl who was to do the procedure, but she did great. I always worry that it takes someone very strong to get into my bones. It was really almost pain-free.
Next stop was Dr. Champlin’s office. It was good to see familiar faces and I was greeted with a big welcome as they always do with us “graduates.” Dr. Champlin had nothing but good news for me. He was happy with the lab results (which were the same as they have been at home.) He told me to begin to cut the drug Tacrolimius (Prograf) with hopes of being off of it in 5 weeks. Several other things revolve around this drug, so they will be diminishing, too, including the treatments I get every 3 weeks to prevent lung infection.
Other good news – I got the go-ahead to loosen up a little on my activities. I can go back to church, etc., with caution and good sense. I can use dental floss again! Who would have thought that would be such a big deal???
And then the big happy news – I could say good-bye to Mr. Chuckles! I went straight down to Infusion Therapy and presented myself to have my CVC removed. I really wanted to have it done there in Houston rather than Orlando just because they do so many more of them there. It was so simple! Lay on my back, get 3 little stitches snipped, the bed was inclined so that my head was down (anyone know why??) and zip it was out. A simple bandage and instructions to leave it in place for 24 hours were all that remained. Happy Day!
I will continue my schedule of labs and Dr visits in Orlando but won’t be coming back to Houston until April – not March as I thought before! As I said – all happy news on that day!
From the clinic we went for a celebratory meal at Pappadeaux – my first visit with NO shellfish, but I managed : ) and then made the drive back to Jack’s.
We arrived about 40 hours ago and I have slept approximately 25 of them. I was very tired from the travel and events at the clinic but I think I’m awake now and ready for some fun. It is cloudy and pretty cool today but yesterday was nice and the guys actually went fishing while I slept. They caught lots and Jack prepared a delicious supper of fish, baked beans and cornbread.
We’ll be here until Monday morning then drive into Dallas for an 11:00 flight home. Until then the plan is to rest and play and just enjoy the feeling of feeling good!
Day 170 ~ Counts, Holidays, Reflections · Dec 28, 05:34 AM by Dale
After a wonderful Christmas at home with family, I’ll get back to taking care of business now – like blogging!
I didn’t post my lab results last week, but they weren’t too thrilling. My white count dropped even lower to 1.8 and platelets to 55 while hemoglobin stayed at a decent 9.5. The good news is this week things improved a little bit. (Has to be those Christmas cookies…) White count up to 2.4, platelets up to 77 and hemoglobin still holding at 9.5. Those numbers are still lower than the last few weeks, but at least are up a little bit.
Even with those lower counts, I’m doing well. I’m still staying home with rare outings and doing things at home at my own speed. I set goals every day for myself not only for the activity but also for the sense of accomplishment that is so important to our mental attitude. Since I am not experiencing cabin fever, I think I’m not ready for any more than this. We knew it would be a long recovery period intellectually but living it is another thing!
I was able to begin Physical Therapy (again!) this week. Apparently I’ve been compensating for the weakness in my legs by using my back muscles – incorrectly – and so have been experiencing a lot of back pain. The first goal of my PT is to get rid of that pain and learn to use and build my leg muscles the right way. I was tickled to see my friend, Kimberly, working at the Rehab Clinic!
I found out yesterday that I probably will be able to have the Central Line removed next week in Houston. Yay! Just one more little milestone I look forward to passing.
Our holidays this year were definitely modified by my condition. Thanksgiving in Houston, Christmas was scaled back, and now New Year’s Eve will be also. We have dear friends who host a party each year that we have attended for the last dozen years or so. I will miss that this year, as it is just too many people in a confined space. Chris will go for a little while early in the evening and then come home to ring in 2007 with me. (Although for me by midnight the ringing may have to come from an alarm clock!)
All of these compromises and more, holiday related or not, have not phased my dear family one bit. They have been more than willing to roll with the punches and take on whatever was required of them. This includes all six of my children who have had to make sacrifices because of my transplant this year. I have not been able to see some of them since the transplant; I have not even seen Ashlee Dale, born Oct 6, yet! So, Chris, Jennifer, Julia, Shawn, Adam, Patrick and Jessica – I love and appreciate each one of you and all you have had to experience this year!
Looking forward to a great 2007!