Day 19 of Consolidation,,,

this out-patient schedule is much more demanding than being in-patient. I find it very interesting that both words end with patient....

We've spent over 45 hours at COH for 10 appointments. Here was my schedule for the first 14 days.

Day 1 - Labs & 4 rounds of Chemo

Day 2 - 2 rounds of Chemo

Day 3 - 2 rounds of Chemo

Day 4 - 2 rounds of Chemo

Days 8-11 same routine

What these day do not included is the time spent receiving blood transfusions. Each pint of blood takes about 2 hours. Remembering that the Chemo is killing the good and the possible bad blood, which is its job. I did need several transfusions.

Day 15 - Labs & 3 rounds of Chemo - this was a really bad day! I wasn't given my pre-medications for nausea, as I should have been. The pill was still in the nurses pocket when shortly after getting my infusion, I got violently sick, my first time and hopefully my last. I was finally discharged after a 10 hour day! Let's just say that "the email's hit the fan" the next day. Mom was on the phone getting names and sending emails to anyone she could get a number or address for. Don't mess with MY MOM!

Day 18 - Labs and blood transfusion

I have needed and am going to be needing a lot of blood and platelet transfusions which are provided by donation. So if you are in the area and have the time, remember that you can come to COH donation center by appointment and give what is called a "direct donation" in my name. This will not only help me but also help replenish the supply. I do want to say "thank you" to those of you that are coming in and donating and because of 'Privacy Policy's" they cannot disclose your names, so please just post a comment or let me know somehow. I have silicone bracelets and I would love to send you one and most of all be able to say THANKS!

So to stay with tradition, here are my numbers for yesterday:

WBC: 1.4

RBC: 2.8

ANC: 0.5

Hemoglobin: 8.4

Platelet: 54

This next week will be the same schedule as last week, treatment on Monday & Thursday. Then back to the schedule of the first two weeks. So it might be easier to say, that I have two weeks with one schedule and then 2 weeks of another, which rotate back and forth. This will be for the next 8 weeks. 

I guess it's a good that I am doing well and therefore don't have much to report and bad because I don't have much to report here on the blog. SOOOOOOOOO call, text, comment, skype, facebook or maybe even visit if you are HEALTHY.  Most of all keep praying. It's great to have a village of supporters.

Until next time or I hear from you first...

We haven't forgotten you...the bracelets will be in the mail soon. Thanks for your patience ü

it's been awhile...

well, let's see, it's day 9 of 56...

we left off with my new medication port, I came home on Thursday night after my chemo treatment. I was battling nausea, a headache and I just wanted to crawl into bed and wait for all of it to pass. Well, that is pretty much what I did, until Sunday.

On Sunday, my second family (YSSC) was having a reunion and I woke up feeling as though I could at least make an appearance. This took everything I had and by the time I left the reunion (after 4+ hours) I felt great. It was a good kind of tired and so great to see everyone. I have to admit that night kind of turned a corner. My appetite started coming back and I started feeling stronger and with little to know head or stomach pain. It was God medicine, a medicine that can only be given by friends that truly love and and care about you.

This weeks treatment is going to be pretty much the same as last, minus major surgery, of course. The process is not quite as streamlined as being in a hospital room. I have to go to them, wait in the waiting rooms, and wait some more. The clinic I am treated in is so busy and for every sick person is one well person and sometimes a family. Can you say, busy? 

Monday, I needed a blood transfusion in order to receive my Chemo. My numbers have done pretty well considering I am getting hit 7 out of the 7 days in a week with several kinds of chemo instead of the once per week while in the hospital. 

Here are my numbers from Monday:

WBC: 1.3

RBC: 2.64

Hemoglobin: 8.1

Platelets: 226 whew heewwww!

So this blog is dedicated to all of you who are praying and supporting me and my family, you're doing a fantastic job and I want to say thanks and keep up the God work. 

consolidation off to a rough start...

since the last update...

on Tuesday I started on a very unexpected path. Since the study that I am on requires me to have the chemo given into the spinal fluid and radiology was very unsuccessful at getting it in through the lumbar puncture, we had to move to plan B? Plan B is to have a Ommaya Reservoir put in, this will allow the medication to be injected into this reservoir/port and then it will travel down into my spine. This is a surgical procedure and I had 6 different appointments from 11a to 5p in order to be on the fast track to getting this port which is scheduled for tomorrow morning. Then at 5p I had my 2nd round of chemo of the 4 for the week. Long, Long day!

Today, I arrived at 8:45 and was taken into surgery by 9:30 and all went well. I am spending the night for observation and will be on my way home by tomorrow around 5ish just after my last round of chemo for the week and will rest for Friday-Sunday. Then be back here on Monday to do the same chemo schedule next week. The God news is that I will not have to go to radiology or have a puncture or have to lay flat on my back for 2 hours. AMEN!

On Monday, that spinal medication will be given to me in the new port and then the other 2 medications will be given in through my pikk line and I wont have to spend the whole day here. Then as I told you before Tuesday-Thursday are short stays to get the same 2 medications in my pikk line. 

I am sure that I have totally confused most of you. The main update is that I now have improved my treatment path by getting this port and this port can stay in place for as long as it is needed. So, we may have gotten off to a rough start but it will definitely be worth it.

Still searching for a calendar solution to help you keep up with me on this journey.

thanks for checking in...

let the Consolidation begin...(revised)

hello again. to all of you...

We have had a few days to catch our breath and I have been under doctors orders to REST. I had some visitors to the house, Kent came by to cut my hair and beard, I rode with mom on a last minute trip to Micheal's to get more yarn and we took a trip to my Aunt and Uncle's to see their newly remodeled house. 

Aunt Lynette, ME, Mom & Uncle Phil

Kelsey, ME, Carrie & Tayren

 

 

 

 

 

day 1 of Consolidation...

This begins the 56 days of Consolidation. The schedule is CRAZY and basically you go to one place in the building and then when you are done, they then tell you where your next appt is and how to get there. 

Monday's will be the longest day.
It involves: drawing blood to see what my numbers are. Today they were GREAT! so I didn't have to have any blood products to build my counts. So next, I went to see the doctor, then we went and got a bite to eat, while waiting on the car to go get some lunch, Mom and I spotted the one and only plane making a jet stream. (those of you who know the jet stream story, know what that means!) then back to radiology for chemo to be given through lumbar puncture, then while I am laying flat for 2 hours I will get 2 other chemo drugs.

BUT not today... I went in for the procedure and they weren't able to get any fluid. They went into a higher spot on my back and then they checked with the xray and the xray showed that everything was in the right place but after about 4 attempts to draw spinal fluid and the pain that came from the needle hitting the nerve, it came up dry. So the tech said he would try again in a higher spot to which I said, AHHHHH NOPE, I want to talk to the doctor. 

So, after I talked to the doctor and he talked to the doctor, it was agreed that we would have to put off this medication for the day and move on to the other 2 medications that are to be given in another building. I now have all the comforts of my induction phase, room, bed, bathroom and my best distraction TV and some "happy" drugs Mom keeps reminding me, "nothing just happens" & my dad's famous saying, "it is what it is". These are the Fletcher Family motto's to live by. I will be here for a few hours and then hopefully on my way home around 8:30p.

Tonight I will begin a pill form of chemo that I will be on, for most of this study, up to a 3 year program. So to say the least, Mondays, for the next 4 weeks will be the tough days (hopefully, not as tough as today). The good part is about all of this is that I will get to go home each day and sleep in my own bed, peace, quiet and home cooked food. 

Tuesday - Thursday for the next 2 weeks...
I have to go each day for chemo and have blood drawn to keep track of how I am doing.

Friday - Sunday...REST!!!!

We are trying to find a calendar gadget to add to this blog, so that all of you can see how crazy the schedule is and then know what day I am on, what I am having done and where I to find me. 

Here are my numbers for today:
WBC: 2.7
RBC: 3.41
Hemoblogin: 10.4
Platelets: 183 !!!!! (above 100, so I'm off to radiology)

We have bracelets that are Orange, which is the designated color for the fight against Leukemia. If you would like one please email us your address and we would be glad to send you one. You have two choices in bracelets: CANCER SUCKS or SAY IT, FIGHT IT, CURE IT. We also have youth sizes in the SAY IT, FIGHT IT, CURE IT. We also have rings that say HOPE, they run really small, mom is wearing hers on her pinkie. Let us know, it is our way of saying Thank You for being on this journey and your way of saying I am a "friend fighting for Tyler"

we will update you soon, feel free to stay in touch..

God News! I'm outta there...

Wednesday morning...

mom arrived just about 5 minutes short of seeing the doctors. We were told that they would be back after doing their rounds on that floor. Well, we ordered breakfast and just as it was arriving, 2 ladies  knock and come in the room identifying themselves as being the Clinical Study Case Workers, we had never met them before and they said "they were here to give us our discharge instructions?" huh? I tell them that I haven't been told that I was going home. So, mom quickly took over and I did the one thing I was really good at after 30+ days, EAT. As they were talking to my mom to tell her about all the required paperwork and record keeping that was needed, I am already on info overload., so I focus on the the TV.  Next my doctor comes in to tell me, yes indeed we are going home and then begins talking with me as the other ladies are talking to mom. After her, in comes the nurse to unhook my IV and get it wrapped to go home, the PCA (patient care assistant) in to take my vitals, Blood Pressure 191/35!!!!, the Case manager pops her head in the door to get my mom's attention to let her know that the pharmacy has all the prescriptions ready and then the guy from food services comes in to bring mom her cup of coffee that they had forgotten on her breakfast tray that was just sitting there getting cold. Can you say CHAOS? Within minutes, everyone was gone and mom and I kind of just sat there staring into space wondering, what had just happened?

So mom decides that it would be a good time to eat her cold breakfast because she was now in training for the next leg of this race.

Now I will slow down and give you some more details.

The bone marrow sample came back with less than 1% mrd (minimal residue disease) which indicates that I am in remission and that I will be moving onto the next phase of treatment which is called "Consolidation". So your asking what is that? The best I can tell you is that it is going to be for the next 56 days and the schedule is crazy. The best part is that I will not have to be readmitted unless I develop an infection or complications. All of this treatment phase will be done at COH in the clinic and on almost a daily basis for the next 2 months. I am going to start this phase on Monday, Feb. 7. So for now all that I need to know, according to COH, is to show up at 10am on Monday, by then the appointment department will have a calendar of scheduled appointments for me. Great!

So by now I have developed a headache, which concerns my mom so she just wants me to lay down and relax, call the nurse and let her know. As she begins to pack up my 30 days worth of hospital stay and stuff. It basically amounted to two trips to the car with a wheelchair full of stuff. Then we decide to wait 30 minutes to see if my headache would improve with the Tylenol that I was given (plus my PCA needed to go to lunch). lol

I'm outta here!

To stay consistent, here are my departing lab numbers:
WBC: 1.8
ANC: .7
RBC: 2.97
Hemoglobin: 9.4
Platelets: 80
Gluecose: under control

The Recreation Manager stopped by to let us know that today, in celebration of my discharge from the hospital, she will be handing out the beanies and teaching how to make them as the activity of the day. She wanted us to know how much she appreciated what we had done and that she has already started to teach her counterparts how to use the looms and make hats. We told her that we would stop by and see her with more beanies as we continue to make them and collect them from the "friends fighting for Tyler" elves.

So by 1:15pm on Wednesday, I was in on my way HOME, first stop IN & OUT! and then for dinner PIZZA HUT, a special thanks to Katie and Dale, you guys are the best and the pizza and wings were GREAT!

Wednesday - Monday...

So I will spend these 5 days at home, it so nice and quiet here. No various hospital staff knocking and entering the room to pick up trash, sharps, linens, to clean the bathroom, mop the floor, use a scanner to scan the bar codes of all the equipment in my room, PCA's to do bathroom checks and take vitals every 4 hours 24/7, food service calling to remind me to order my food and numerous calls for my nurse to come because of BEEPING IV monitors. I'm just kicking back in the comfort and quiet of home, is it nice to be home again. Ü

I want to say thank you for being on this journey with me and my family, please continue to pray and send your notes, texts and phone calls. We will update you again, after my I have all of the details of this next phase.

my love to all of you...

results pending...

I know, I know everyone is wondering... what's the news?

Well, here is just a little update to catch you up. Monday, MY doctor drew my bone marrow at 11am and she didn't have trouble getting the vile full but even she wasn't sure that there was enough marrow. She couldn't see as many little particles, that are bone fragments, that she is use to seeing, mostly blood but I can tell you that she was pushing so hard on that needle that she was pushing me down into the bed. I really don't think she could have pushed any harder. Mom said that she was using all of her body to push and that her hand was even shaking because she was pushing so hard. The Fletcher's have strong minds, bodies, souls and bones. lol

The sample was sent out to Seattle, WA for testing and as of today we still don't know if there is enough to test or what the results are, if there is. We are hoping for Wednesday. So while all of this waiting is going on, there is talk of me getting to go home. That in itself is encouraging. All of that paperwork is in place. So it can be this week or in about two weeks from the day we get the results. (of course you have to factor in Hospital Time)

My numbers are...

WBC: 1.4

ANC: .5 (new, see margin for normal)

      these are the 2 most watched numbers that have to climb
RBC: 2.90
Hemoglobin: 9.2
Platelet: 62
Glucose: 152

Here are pix of my room, I want to say thanks to Kent and Laurie, for helping my mom get this room ready for me to come home. Ü

BEFORE!!!! Ü

New Bed & Headboard

Custom Closet

Drop down desk

Closet before (gold trim)

Closet after (matching custom trim)

New raised shower head

Old goofy shower head

So there you have it...you're all caught up. I look forward to reporting God news to you the next time you visit. Thanks for checking in...