On this day of celebration of Jesus' resurrection, I ended up in the hospital. I had my surgery on Friday, and made it home and into bed by 7pm. My neck was sore and stiff along with my throat feeling swollen. We thought it might be because of the surgery so Saturday, we tried Tylenol, aspirin and pain meds and nothing seemed to keep me comfortable. By this morning I could hardly swallow and I was running a low grade fever.
Mom jumped into action and call the after hours hotline here are COH, (its called, the ETC, emergency treatment center, note: it's NOT an emergency room.) she and I answered all their questions and told them all that we had done to manage the pain and they told us that they would call the On-call doctor and call us back. Well, they did call back and told us that they wanted me to come in so they can see me.
We got here about 1:30pm and they began running a lot of test like: a chest x-ray, blood draws both from a stick in the arm and also a stick in my new portacath, a urine test and a nose swab. After just a short time they started me on antibiotics based on what they saw on the chest xray and then told me that I was going to be admitted because my throat was really swollen, red and showing signs of breakouts and they figured it was going to be worse before it got better. They also said that they have better ways of treating it and better drugs for pain management. They can also keep me hydrated and fed via liquids better, OK? So, I am in the right place. Laying in bed looking up to my Father that I trust completely to know what is best for me and then out the window in time to see a jet stream and knowing that my dad is right here with me.
Mom, made a made dash to Wally World for hospital wear for the few days I may be here and also to buy some cup-o-noodle and mac & cheese, my anytime snacks to say nothing about the fact that she knew it would be warm for my tummy and easy to swallow. I have really been lucky not have this mouth issue sooner because the mouth cells are the first to take a beating and they are the first to be irritated and also the first cells to heal. So, for that I am thankful, or at least I will be once they heal.
Anyway, that's about it from here, enjoy your family's and all the food that they brought with them. Thanks for your prayers and staying with me on this journey.
Happy Easter! He is Risen...(tell a Friend!) that's for your Mike B and in memory of Mr. Wallace.
The God news is that my blood levels stayed high enough and I will be able to get my Port-A-Cath tomorrow, Good Friday @ 12pm. This will be replacing my pic-line and give me the freedom from having to have the tubes hanging from my arm and will eliminate the chances of another infection, dressing changes, covering it to shower, having to have it flushed each time it needs to be used. FREEDOM! The Port-a-cath will be under my skin in my upper chest. Then when it is needed, they will insert a special needle, which will give them complete access to the vein for drawing blood and giving chemo or blood products. YEAH. Thanks for your prayers.
Now for the not so good news...
This high dose treatment kicked my butt today. I have had aching in my legs and they have not been able to control that pain and I have been nauseated so I couldn't eat my burrito that mom brought me from Chipolte, (my favorite food). I had to settle for a sip of Sprite and 2 soda crackers. I finally managed to get to sleep about 3 this afternoon and mom is standing guard outside my room to keep out all disruptor's (not sure that's a word, but it works). So, "note to self" Round 2 - stay on the anti-nausea medications for one day longer.
Here are my surgery worthy numbers for today, thanks to all of YOUR prayers...
The doctor said to expect these to start dropping after day 5 or 6. We'll deal with that later!
So until next time, Happy Easter Weekend! He is Risen! Tell a friend Ü
My counts were not high enough to start this leg of treatment last week, so I spent the week feeling tired, yet able to do things that made me feel normal. I hung out with some good friends, watched while my buddy's worked on their car, played some pool and watched a few movies. And then came TODAY!
My day started at 10:30 at COH in the regular blood draw lab because the problem I have been having with my pic line ended up just as mom had predicted and was doing everything from flapping her arms to standing on her head to get them to take notice. On Friday, it had to be removed because of a rash that is a fungal infection on my arm and they were afraid that it would get into my arm and that wouldn't be good. So they had to pull the line and order cream for the rash. So today I had to get my blood drawn like everyone else.
After that I went to see my doctor and my blood levels were high enough so I had the Bone Marrow biopsy that is needed at this stage. After that I went to admitting and was taken to my room on the 3rd floor.
At about 2pm the pic nurse came in to put a new pic line in my right arm, that went very smooth and now I was ready to start the 6 hours of hydration before the chemo.
Right after that procedure the CHARGE nurse comes in to tell us that we are being moved to another floor because they needed my bed. This was about an hour prior to another IT chemo procedure. REALLY? Then right behind her came the nurse to tell the Charge nurse that Dr. S wants him to stay in this room until after the IT chemo, so I was given my premeds and began the wait prior to the chemo wondering if mom really did find the solution so I would avoid getting sick.
After the 30 minutes plus had passed the Dr came in and started prepping for the procedure and by then I was so pre-medicated I couldn't stay awake, it concerned the Dr because at times I was even snoring. Ü So, I am happy to report that I slept through and didn't have any sickness. God news! in fact they came to get me in a wheel chair and moved me to my new room on the 4th floor and I climbed into that bed and slept until 7:30 when my mom woke me up to eat dinner. Then back to sleep and waking up only to have the nurses take vitals.
So at 11pm, I was pre-medicated again and my 24 hour IV chemo therapy (high dose Methotrexate) started. I will be drifting off to sleep watching "Dinner with the Schmuck's". And just like that last time I was in-PATIENT, my output has to be measured and tested to make sure that my kidneys are functioning and this chemo flushes through without causing further problems. I will be here for 3 or 4 days for hydration and lots of labs to make sure that this moves through my system.
This treatment is the same treatment, every other week for 8 weeks. Yippppeeee!
So, that's it. 10+ needle sticks, 4 different procedures and lots of sleepytime medication.
Happy 2nd Birthday, Christopher, love Uncle Tyler! See you Sunday at the park.
well, this week went very much like clock work, we spent long hours on Monday and Thursday which was my last week of the Consolidation Phase. Monday I start the third phase, Interim Maintenance. I'll explain that phase in just a minute.
As if all of this treatment was not enough, I had an added adventure yesterday, it was called "ingrown BIG toenail surgery" ouch Charlie! My mom has been my podiatrist since I all of this began and she has been doing a great job at restoring the health of my feet. (Only your mom can stand the smell) She was really successful at getting my nails grown out and my feet healthy but despite all of her hard work, she realized that she needed to call in the doctor on one of my toes. My doctor took a look and told us that there is only 1 podiatrist in the clinic and very hard to get time with so she suggested we get it looked at outside COH because she agreed it was not looking good. Mom of course did all the research and wheeling and dealing with a doctor on my insurance plan and managed to get me in on the same day, yesterday. She left me in the car while she filled out all of the much needed paperwork and this was to minimize my exposure to any possible germs in a waiting room. We then waited in the car until it was my turn and as the doctor began to explain what needed to be done, I wanted to get up and run. He said that it wasn't going to get better on its own and that he felt it had to be removed. I wasn't happy and tried to explain that it did hurt that bad. Nobody was listening! So, to any of you who have had this procedure done, you feel my pain and I don't dare put all of the details on here because my brother Kent told me he has the same problem and if he reads the details he will never get his fixed. It was kind of cool though, the doctor gave me the piece of nail that he cut out, along with his card, to take to show Kent at my nephews 2nd birthday party this weekend. Ü Anyway, today I am better and mom is doing the aftercare that needs to be done twice a day. Just another thing added to my care plan that she keeps such good track of.
So now the explanation of "Interim Maintenance"
It, like Consolidation , is 56 days (8 weeks). This Monday will be day 1 and I will go in first to have my labs drawn, then the results will go to the Study Guru's to decide is I am able to start this next phase. Meanwhile, I will then be prepped for a Bone Marrow Fluid and bone draw which required as the last procedure of Consolidation. This will tell us if there is any residual of the leukemia. Remember it was what needed to be, less than 1%. It just has to be drawn and the results are not necessary to move on to phase 3. So, after that and any blood products I may need, I should be admitted into the hospital and will be given chemo into my Omaya Port and then the same chemo through my IV for a 24 hour period. I will then stay in the hospital for about 3 or 4 days in order to be given what they call and antidote to this chemo in order to protect my kidneys and to make sure that it gets flushed through my system without causing any other trouble. Along with that comes the input/output checks and various anti nausea meds that I might need. Once I am discharged, I will go home and only come back the next week for labs and blood products if needed, only to go through the same thing 3 more times. So every other Monday I will be admitted into the hospital for 3 or 4 days for the next 8 weeks.
There you have it...we will keep you updated as often as we can.
I look forward to being with my whole family on Sunday to celebrate Christopher's birthday. Nobody does birthdays better than the Fletchers. I'll be sure to post pictures for all of you to see. So for now, keep praying for my family, words can't express how grateful we are for each one of you.
Sorry for the update delay, the ghost writer was putting together her view of our time together. Thanks for your patience.
Thursday, March 31, 2011
Well, I’ve made it through another week with God’s help. Monday started off with low numbers, so I needed blood products. I also received the chemo I was scheduled to have. As always, Mom was watching to make sure all was done correctly. Thursday brought another day of low numbers. I ended up receiving blood products again today. Mom was taking a much-needed rest, so she called in the B team, Aunt Lynette. We watched some T.V., and Aunt Lynette was entertained with all the procedures. She’s still a rookie!
It made for some long days in the hospital this week. I’m thankful that I’m still feeling pretty good, just tired. I’m looking forward to a good weekend, visiting with some friends and then starting a repeat of this week’s routine next week.
As always, I’m grateful for your company on my journey. Keep those prayers coming.
Here are my labs from Thursday:
WBC: 1. 7
Aunt Lynette’s 2 cents!
What a great experience Thursday (3/31) was! It was fascinating to watch all the procedures. Tyler was bored with the whole thing, but it was new to me. My day went very fast! ? So many blessings filled that day: • Tyler was healthy enough to walk into COH on his own! PTL • He knew exactly what he was doing, what to expect, where to go. I was just blessed to be a second set of eyes and ears for the day. • We had our own room. Tyler knew exactly which room he wanted and politely asked for it. Smart boy! • His nurses are delightful, humorous, patient and kind. You can tell they like Tyler! (That didn’t surprise this Aunt in the least!) • My wonderful nephew watched I Love Lucy and cooking shows with me! How sweet was that? Laughter was the best medicine that day, for sure! I am so grateful for the time I was able to spend with Tyler (and would do it again in a heartbeat). I am proud of how he is traveling through this unexpected journey in his life. He’s a good man. I couldn’t love him any more! Thanks for sharing your day/journey with me, Tippy.