Back On Track

Well I guess the question on everyone’s mind is, what’s the word from the doctor’s appointment on Thursday. ……Chemo is ON…….

Labs and kidney tests all have shown improvement and that will mean going camping in Portland starting Labor Day and treatments on Tuesday, Thursday, and Saturday. It will also include the first step of the Transplant process, Autologous Stem Cell harvesting…. Uhhhhhh wut…..

Florence has agreed to have her own stem cells (Autologous) used during transplant. Considering the type of Leukemia and the risks involved in the different types of transplants, her doctors felt this was the best treatment plan for her.

So you might ask, ‘how do they do that????’

Sunday, following Florence’s chemo week, she will start a series of injections to move her marrow stem cells into her peripheral blood stream so that they can be collected by a special machine. Injections and lab tests will be done daily for 3 to 5 day until levels are high enough for harvest. Harvest (collecting stem cells) will usually last 1 to 3 four-hour sessions, one session per day.

Following harvest, we get a break at home until the first of October. October will start the heavy-duty chemo, transplant, and recovery. This will take 3 to 4 weeks while being a patient at OHSU to be followed by 2 additional weeks close to OHSU as an outpatient, probably at the RV Park again.

That will take us into November and the hope of staying clean for 5 years and then being considered CURED.

So the next few days will be getting ready to go and mentally preparing to do battle with the wild creatures of Tualatin.

Have a great Labor Day and be safe,
Larry

I Probably Should Hide After This One......

Well it’s almost an even day and Thursday was a ways back so I decided I’d better blog so the comments don’t start getting ugly at me for not. Did that make sense????

So Baldyhead (hey, hey….. don’t blame me, she gave herself the nickname) needs a kidney gauge so I can figure out if she is getting better, been sweating it all weekend. There is a GFR level but I'm not exactly sure what it means (Florence says it stands for Grand Funk Railroad). Then today after labs we see that the kidney function levels seem to be getting a little better each time. But then she decided to let her white and red blood cells slide so guess what….. TRANSFUSION TIME!!!!!!!

That’s right folks, 2 units of blood and she’s tanked up again. Where is she putting this stuff…… Or better yet, why ain’t the marrow keeping it up. Not sure they tell us. Chemo??? But wait….. Platelets are up???? How can that be?????

She is also still on the bottle (OK it’s an IV bag but ‘the bottle’ made you wonder). 1000cc (that’s like 1 quart for normal people) infusion every evening so she can get up 2 or 3 times at night for… well… you know. But then maybe she’ll get to see the eclipse tonight!?!?!?!?

Keep your finger crossed that things keep getting better.

Good night from myself and Baldyhe..... I mean, Florence…..

Later,
Larry

Another Change in Schedule.....

In the last blog I wrote…. Yah, I know it was 5 days ago….. I said we would be going to Portland this week. Well that has changed. Our meeting today with Dr. Kovacsovics was full of information, some good and some not.

He informed us that Florence’s lungs have healed and the CT Scan was clear of infection. He also explained her blood counts continue to increase but the platelets were lower than he likes to see before Chemo.

The Abelcet drug used to heal Florence’s lungs was also tough on her kidneys. That is why she was pushed to Drink, Drink, Drink. As it worked out her kidneys weakened and now they too require time to heal before Chemo can resume. To help the healing I will again be hydrating her each evening through Monday when labs are drawn again. If her counts are not within normal limits I will continue these infusions.

As for treatment regiments, Dr. K explained that Leukemia could range from easy to difficult to cure with Florence’s specific Leukemia falling somewhere in the middle. With that, a transplant from a sibling gives the best odds to avoid relapse. Since none of Florence’s brothers or sister were a match, another source was needed. In this case, harvesting Florence’s own stem cells is the next best choice. Once stem cells are collected the treatment process will consist of 4 weeks for Chemo, transplant, and time for blood counts to rebuild. Then an additional 2 weeks in Portland to assure Florence is strong enough to return home; a total of 6 weeks away.

The most eye-opening information was the stats about the AML Florence has and the transplant outcomes. If you recall the AML she has would have been fatal in 2-3 months if left untreated. Her chance to gain remission was 60 – 80% and she did that on the first round of chemo.

Now, if she elects only to continue with her consolidation chemo she runs a 60% chance of relapse in the future which means starting treatment over again. If the transplant takes place the chance of relapse drops to a 40% chance. With each option there are risks and with the Doctor’s guidance Florence is trying to make the best decisions for her.

We will have another consult with Florence’s doctors next Thursday when they hope her kidneys are functioning well and treatment can be scheduled to resumed. So for now we are working on healing kidneys and building blood cell counts.

Time for bed……Larry

Blood Drive

Calling all local folks who want to give a pint of blood Florence's honor. Good Shepherd Lutheran Church in Albany will host a blood drive Wednesday August 29, from 1 p.m. to 6 p.m. Florence was an avid blood donor, and now she's found herself on the other side of the needle, so to speak. Got good veins? Make an appointment via Marilyn Kirsch at 541.990.5254. Walk-ins are also welcome. Good Shepherd Church is located at 34th & Columbus in Albany.

Audrey

News in the Future.....

No more Abelcet……. SO, what does that mean you ask…. It means the 5 hour home infusions are done. After this weekend and a couple of 1000ml hydrations, that take about 2 hours, Florence will be done with her home IV infusions. It also means she stops 7 of the morning pills but the doctor did add a new drug that means 3 new tabs. After doing the math she is down 4 tabs in the AM and takes the same amount at night.

This next week we will be going to Portland twice, once on Wednesday and again on Thursday. These appointments will include lab work, chemistry levels, a bone marrow biopsy, and a conference with the doctor. As we understand, with Florence’s consent, the medical team is looking at transplanting Florence sometime soon. We don’t exactly know what that timeline will be so we hope this week will answer some of our questions.

The 2nd Consolidation treatment is still scheduled for the 27th, 29th, & 31st. This will mean we should be back on Sept. 2nd and Florence’s blood levels will be down during the next week until about Sept. 11th if things go the same as last time. I’m still hoping to get some work hours in during this time, too.

And, for tomorrow I hope it doesn’t rain to much because I have rock to compact and a trailer to wash.

Thanks for stopping in….. Larry

Schedule Change........

Well, some news about schedules. It looks like we will be going to OHSU for an appointment with Florence’s primary Physician, Dr. Kovacsovics on Thursday, August 23rd. As we understand he will be discussing with us his treatment plan for Florence as well as his thoughts about a future transplant.

His plans for the next Consolidation is to start the second round on August 27th, so we have reservations in the RV Park again for that week. So, next week I will be prepping the trailer and giving it a wash. That way it will be ready to smash a bunch of insects on the way up I5. Ahhh, the fine Technicolor addition they make to the exterior paint scheme of a trailer……. Enough daydreaming…..

Florence had labs drawn today. Not sure what they were because Florence didn’t feel like waiting around for the report. So, I will stop in tomorrow and pick it up. My guess is blood counts are up and fine or we would have received word from Dr. Neville’s office.

Florence called me into the back yesterday because a BIG dog was in the backyard. I went out to have about 80 pounds of dog in a short stand-off until he warmed up to me. Then I realized the pooch was the neighbor’s dog from the block behind us. So, after loading 80 squirming pounds of dog into the truck canopy, I took Cowboy (that’s his name) home. Now I can clean the dog nose snot off the inside of every single canopy window when I clean the trailer. Man’s best friend…….

Other than that, things are as normal as they can be.

Thanks for stopping in…… Larry

Schedule to Follow.....

Today is Tuesday so I’ll fill you in on the last two days. As Florence’s blood counts increase she seems to be feeling better. Guess that would make sense. She has had a couple of bouts with nausea but we have DRUGS to help correct that. Monday’s lab results are below if you are interested. As you can see they are still climbing!!!

I was able to work the last couple day since Florence had some friends stop in and even take her to some appointments. The help is much appreciated.

Today we met with Dr Neville in Corvallis. He was pleased with the blood counts. He has also been checking on Florence’s CT scan results but they seem to be AWOL at this time. In order to get the results a CD of the earlier scan needs to arrive in Corvallis so the Dr can compare the two films. Until then we wait.

We also talked with the Clinic at OHSU about scheduling Florence’s next Chemo and we should hear tomorrow when that should start, 20th or 27th.

So, since I have no little white lies for you I think I will hit the sack and write another night.

Good night for now….. LA


Stats from 08/13 labs…
White Cells 5100 (4500 - 11000)
Neutrophil 3.72 (1.8 – 7.7)
Red Cells 3.69 (4 - 5.2)
Platelets 71 (150 - 400)

Another Sunday; Another New Week....

So, what happened this weekend you might ask? Saturday was the Fire Department Picnic and since Florence should soon be receiving another dose of chemo resulting in a drop in her immune system, we felt it better we stay away from crowds to avoid coming in contact with any nasty germs that might decide to flourish when that drop occurs. It was also during the time when I have to be giving her the 5 hour anti-fungal infusion. However, we did manage to visit a couple friends earlier during the day. It was nice to see Florence enjoying some fresh air and getting out of the house.

Sunday was a house cleaning day with Audrey, Shannon, Lindsey, & Rhonda coming by to help clean the house. Florence called Audrey earlier in the day to tell her she had cleaned the bathroom and wanted to know when they would all arrive so she knew how much time she had to clean the kitchen. I think Audrey ‘went off’ so Florence laughed and told her she was kidding. Pretty good joke (of course I had nothing to do with suggesting it….). When Shannon arrived I was getting set up to wash our cars and my Harley. She saw what I was doing and said something like… well, if you have time to wash your motorcycle, you have time wash my car too or I won’t help clean for Florence…. So with that it added another task to my day.

Florence will go in for labs again tomorrow so we will see how her blood levels are doing. We are also hoping to hear results from OHSU regarding the repeat CT scan of her lung that was done last week. I have supplies for one more anti-fungal infusion for Monday night, maybe that can be the last. Additionally, we should be hearing as to a definite date for the 2nd round of Chemo. We think it should be set for August 20th – 24th. Maybe that will be confirmed tomorrow, too.

I have to again thank everyone that has helped us. With all of your assistance and friends checking in on Florence it makes me feel more comfortable to spend some time away. I’m finally able to get a few hours in at work to keep abreast of things and to tie up some loose ends.

Thanks for stopping in…… Larry

PS. - - OK, so the car wash, not helping clean, thing was a complete lie. But without that little saga the weekend blog would have been boring and this was much more fun to write about. Sorry about that Shannon… Oh and by the way, I did wash your car…. Thank you very much!!!

Stronger Each Day

Day by day Florence gains strength and the lab work shows her bone marrow is in high gear. Her numbers are below. Now she just needs to get on the treadmill a little and DRINK fluids.

Audrey is keeping up the helping hands calendar and hounding me about where friends can help. I’m really not good with passing work around our home off on to others. I think she or Wanda, who also asks what can be done to help, one of them will take me out if I don’t start giving up some ideas. Better think of some or they are threatening to paint the house. Now it does need painting but they are suggesting Orange with Black trim.

Not much else to report. I will soon be cleaning and loading the trailer again.

Thanks for stopping in…..
Larry

(norms)

Stats from 08/06 labs…
White Cells 600 (4500 - 11000)
Neutrophil 0.220 (1.8 – 7.7)
Red Cells 3.37 (4 - 5.2)
Platelets 4 (150 - 400)

Stats from 08/07 labs…
White Cells 2500 (4500 - 11000)
Neutrophil 1.700 (1.8 – 7.7)
Red Cells 3.75 (4 - 5.2)
Platelets 8 (150 - 400)

Stats from 08/08 labs…
White Cells 4800 (4500 - 11000)
Neutrophil 3.680 (1.8 – 7.7)
Red Cells 3.81 (4 - 5.2)
Platelets 15 (150 - 400)

Counts Jump, Treatment Scheduled.........

Florence’s cell counts have jumped considerably the past two days. The little suckers have managed to get themselves in a range where no infusions are currently necessary. The OHSU doctors are arranging with Dr Neville to have a CT scan of her lungs done here locally and Dr Neville feels we should be on track to start the 2nd round of Consolidation Chemo on time on August 20th.

This will mean another camping trip in Tualatin from August 19th – 26th and some late nights at OHSU. But then it will also mean a chance to visit with our adopted 5C family. I’ll have to get Florence to do some walking around campus to visit her nurses and cna’s.

So, no lab appointment tomorrow, as a matter of fact, no appointment until Monday. Florence’s spirit today was much better and she's even smiling at me. Nice to see, but I wonder what she was thinking about.

Nice to hear from everyone, stay safe….Larry

Sometime Pain Means Something Good....

So I guess I got an answer about those reading this blog… Thanks for the notes.

As for developments, Florence’s platelets continued to drop on Sunday leveling out at 0%. Yup, none, not’a, nil, and the doc’s were concerned to say the least. They called and wanted me to realize they would be happy to admit Florence if I was uncomfortable watching her. Any fall or bump to the head will = a CAT Scan. Without platelets there is no clotting if you bleed.

Then about 0200 hours Florence awoke with pain in her joints and lower back. After taking some vital signs I called the Hematologist. I told Dr. Li what was up and she asked if Florence looked toxic which she did not. Dr. Li told us to have Florence take some of the pain meds we had been prescribed (wondered when we were supposed to use these) and after a short time Florence was able to get back to sleep.

Today Florence received 2 more units of blood and Tuesday morning another unit of platelets at AGH. Dr. Neville called to assure we could make an office visit in Corvallis later Tuesday afternoon and mentioned that the bone and joint pain could be a sign of white cells coming back. Jeanne a friend, took Florence to the infusion center today and got me copies of lab results that showed a slight increase in the white cell count and Florence actually hung on to some platelets. Maybe sometimes pain is good.

It also sounds like a Lung CT is soon to be taken to check the nodes. OHSU continues to be in touch with us and our doctors to arrange continued care.

So with Jeanne’s assistance with Florence today I was able to spend about half a day in the office and Tuesday should be the same.

Again, thanks for looking in and wishing us well.

Larry

Ahhh, relaxing at home???

So today being Saturday means I missed Friday….. again.

Our days seem to be gauged by medical appointments. Thursday, Friday, and Saturday all included blood level lab work in the morning at AGH, blood product infusions during afternoon at AGH, and anti-fungal infusions at home at night. I round out the day making meals and sort of keeping up with chores. (The dryer alarm is sounding now as I type… will that load wrinkle???? Hummm

Florence’s blood levels are pretty much in the toilet (for the lay people, that’s a technical paramedic term meaning poor) and the Doctors are saying they hope and expect to see her blood levels starting back up next week. In the mean time they try to bump up her levels with the infusions. At this point Florence seems to be killing off more platelets than they can infuse so Sunday at 1000 hours (10am) she will get another unit. That will make.. let’s see… since Thursday... a total of 3 units of blood and now her 4th platelet dose on Sunday.

We are trying to figure out how I can get back to working again. To date I have been out since this started, 65 days ago, and the department has been just great about everything. I will be out again during the next round of chemo later this month but we will know better what to expect at home when we return. I don't like leaving her at home.... the stupor thing you know. (Man, there's going to be payback for that)

We are hoping that the home infusions will be done during the next 2 weeks. A follow-up CAT scan is being scheduled here locally to look at lung tissue and nodules. It is nice that the local docs work with and consult with the OHSU medical team. I know they are forwarding lab results back and forth and making decisions together. Still this whole venture is very unnerving.

Got the trailer vent fixed…. don’t ask…. and, I have been messing with this installment off and on for about an hour now so I guess I should post it and get the lawn mowed.

I’m thinking about blogging on the even days…. I have no way to know if anyone is reading this thing…. Maybe Trent can add a counter…. Hummm..
Until next time……….. Larry

Blood, Platelets, and Bees

Tuesday we had an appointment with Dr. Neville in Corvallis. Very conscientious and thorough answering many of our questions about want to expect and what is available locally for treating and facilitating Leukemia patients. After talking to him we feel safer at home knowing that there are capable staff and facilities at AGH and/or GSH.

Today Florence had labs drawn at Albany General Hospital. The results showed a need not only for 2 units of blood but included a platelet chaser. This lasted till about 1730 hours (5:30pm). So her home infusion is lasting till 2315 hours (11:15pm). Makes for a long day and we need to be at AGH at 0900 hours tomorrow morning for a recheck of labs. This was kind of expected from this chemo round. So needless to say Florence’s immune system is compromised at this point. Good news is still no fever. She is on numerous meds to boost her systems and protect her chemically…… more pills, just what she wanted. I think she is up to 13 to 14 morning tabs and 5 or 6 evening ones. She is just thrilled.

Florence spent a little too much time in the sun on Monday and developed a rash on exposed areas. Chemo + 20 minutes of direct sun = sun rash. I now have her armed with SPF 70 sunscreen and she is wearing long sleeve shirts and pants.

As for exciting events… Yesterday some friends were here to trim and prune some plants while I mowed lawns. During the process Florence asked if they could trim up some of her evergreens. Sure they said... but….. Surprise, surprise… Some bees had built a nest in one of them and when the trimming started they seemed to take offence to the remodel work on their home…. Uhh, sorry about that Leslie!!!!

And they wonder why I don’t mess with Florence’s plants…..

The days are flying by and I just try to keep up... sorry for the delayed updates...

It is late and appointments in the morning…

Thanks for looking in..Larry