Sunday, August 21, 2011

the days got worse but are starting to get better...

I did get out of the hospital on my birthday and was so weak that I spent the night here at home. I was so grateful that I was finally home. My first night is sooooo quiet that I have trouble sleeping and getting out of the habit of opening my mouth, raising my arm for the blood pressure cuff and extending my index finger for the pulse oxygen clip, to a nurse saying, "Mr. Fletcher, we need to take your vitals". Mom has a much quieter and gentler way and manages to get in and out without really having to wake up. I am so glad to be home.

Thursday, August 11, back to COH for labs and my last cycle of chemo for this round and I needed a transfusion of a blood product that was low.

Monday, labs only scheduled. A friend of mine came with me this appointment and COH didn't disappoint me, they drew labs and he and I went to lunch, came back needed another transfusion and then left it was a 12-5p day.

On Tuesday morning they call to say that I needed yet another transfusion and to come back for that. Ok, done.

Thursday, August 18, back for my day one of Interim Maintenance. I am scheduled for labs and if they are high enough I am to get Chemo in my Ommaya port and 2 kinds of IV chemo. (note: my doctor is not there to do this, she is at another conference. grrrrrrr!) Well, my labs were drawn and we waited and waited and then after about 2 hours the nurse comes back in to tell us that they need to be drawn again because the other ones were not able to be read, ok. More blood drawn and more waiting. I am soo over this place and having huge anxiety over 1. a strange doctor doing my Ommaya port injection and 2. having the bad reaction like the last time it was accessed and not wanting to have that headache again and 3. I have been at this place for 15 of the last 20 days. I felt like I was in prison, that I didn't have any say in what was going on and that this place runs my life. I was offered some meds to help with the anxiety and I told them that I didn't need them. What I needed was to just be able to go home, I didn't want to be there another minute. I was trying everything to get my mom to take me home and she kept saying, there is no other option, we need to keep fighting and believe they know what's best. She along with the nurse convinced me to take something to help me relax and that I wasn't going to get chemo today because there was something going on with my blood and the chemo has been postponed. The nurse told me that the on-call Dr. would be in as soon as the new numbers were back.

Well, shortly after I was able to relax and fall asleep, my very small treatment room was suddenly filled with 2 doctors and 3 nurses. They wake me to begin to tell me that my Triglycerides as dangerously high and this is the reason they can get my labs. I have so much fat in the blood that they can't see the other cell to get an accurate count. Then the Dr. says we are going to have to admit you to do what is called a Blood Exchange, this means hooking me up to a machine and taking out my plasma that is full of lipids (fatty cells) and replacing them with clean cells. He say that I will have one treatment tonite and then another one the next day and I should be able to go home after that. Well about that time I was about to go postal, mom speaks up and asks the Dr. to go over it again, so while he begins again to explain what is going on 2 nurses from the donor center do what is called a vein check on my arms. The doctor said that my numbers have gone from 900 on Monday to over 4000 today. It is called Hyperlipidemia and if it stays that high Tyler could become very sick and have several complications. He said that the chemo that I get in my thighs is the one that causes this and that we need to act quickly. Well fortunately I had good veins in both arms and the to blood donor nurses say that I won't have to be admitted and that they can do this as an outpatient procedure. Today and then again tomorrow. This treatment is very effective in bringing down the counts quickly.
Off to the donor room via transport. Within an hour I was hook up to the blood exchange machine, I am to lay still and keep both of my arms completely still for 3 hours.  No problem, with the help of the anxiety med I was able to nap to pass the time while the synthetic (8 units of albumin) were going in and then just before the 4 units of donor plasma was to go in, I was given Tylenol and benedryl. So, I was pretty comfortable despite all of this and then I began to itch, I was having an allergic reaction to the donor plasma, Mom said that it had to be the one unit that was "O Negative" because I am "O POSITIVE" and choose not to be negative. So my body did not want any negative to be able to take over. I broke out with some hives and was immediately given even more benedryl which totally knocked me out. I guess it was about 8:30pm that we were on our way home. Mom called Hungry Howies pizza from the parking lot so that we could pick up the pizza on our way home and she also called Kent to meet us at the house. I was very medicated and she needed back up to make sure that I made it up the stairs to my bed safely.

Friday, August 19th, up at 8:30am to head back to COH for my second blood exchange procedure. Labs were drawn and then I was hooked up again to receive the same amount of Albumin and donor plasma and after having a little trouble getting my veins to cooperate the process went almost exactly as the day before with on exception, they had to pull one of the needles and restart it because the vein was not cooperating and YES, I did have the same reaction to a "O Negative" donors plasma and ended up with hives and needing some hydro cortisone. About 1:30 I was headed over to the clinic for my follow-up doctors appointment. The good news was that the first exchange brought the number down from over 4000 to 1100, I was going to only need a blood transfusion for the clotting factor in the blood and that they would be postponing my chemo until Monday, so MY doctor could take over. I was going to get the weekend off and the doctor put it but my numbers are way to low in order for me to even get chemo at this point.  YEAH !!! get me out of here. Mom stopped and got me some lunch and the minute I got home I headed for my refuge, The Pool Hall.

I realize that this was quite long and it was the short version of all that did happen. So thank you for sticking with me and allowing me to get all of this here on the blog. It will be a day in this journey that I will have to say, I am glad it is One Less that I have to go through. Thank Ü

Here are my last counts:
ANC: .6
WBC: 1.7
RBC: 2.71
Hemoglobin: 8.5 (not accurate because of the lipids)
Platelets: 260 (not accurate because of the lipids)

Sunday, August 7, 2011

day 46 of 56...

yes, another update...

I am still in-patient, actually about now I'm pretty im-patient. Today is my 10th day straight in just being here in the City. I have been trying to bribe the doctors to let me out and they are just smiling and closing the door. I have high hopes that Monday, my birthday, will be the day. My doctor will finally be back in town and I know I can talk her into it.

I have to admit that this stay I have felt the worst ever. I had a fever and headache for 3 days, which requires multiple kinds of antibiotics which in turns creates nausea and stomach issues. I wasn't even hungry up until just yesterday, so it's been a great diet program. I have had a never ending supply of medications and drugs to try to ease all of my pain and discomfort. I have received multiple transfusions of blood and platelets and on Thursday, was given my day 42 of chemotherapy. What a disaster that was! I clearly was not on my favorite floor, the Ped's floor. The nurses on this 5th floor are not use to giving chemo from a protocol and therefore use that as their excuse in making errors. If it weren't for my mom here day and night to watch over me, I would have missed 2 different pre-medication, she had to ask why they weren't being given. The nurses did not know how to give the Chemo that is injected into my thighs. I asked the two nurses to inject at the same time and one of them went on 1 and the other went on 3, to which I replied, "at the SAME time please!" so the next two were at the same time but not without pain.

This stay as truly given an even worse reputation to Hospital Food, my order was never right! and as mom says, well the one good thing is, it gets you from one meal to the next. Thanks, Mom Ü  and Yes, as you can expect, Mom has sent an email to the "who's who" of COH, letting them know how much better the place would be for every patient, if they would just let her run it.

So even though this is a bit sarcastic, you all get the point. I'M OVER IT AND JUST WANT OUT!
my view for the last 6 days!
Here are my numbers as of today...
WBC: 1,3
RBC: 2.89
Hemoglobin: 9.0
Platelets: 64

until next time...

Wednesday, August 3, 2011

day 42 of 56...

well, I just wanted to give you an update. Last Thursday was my Ommaya port chemo for this round and starting that day I developed a headache and nausea that couldn't get relief from. I told them on Friday when I came in the clinic for chemo and they though it was because my hemoglobin was low. The gave me some medication for pain that really didn't do anything but dull the pain and on with this dose of chemo I get pre-medications to help with the nausea. They sent me home and hoped that the headache would correct itself. 

We came back for my Saturday dose of chemo and I still had a headache told them and they decided to give me 2 units of blood to help with the hemoglobin that was 7.3. They said that will help. I got my chemo and more med's and was sent on my way. We went home and we were going to spend the rest of my day with Grant, Jen and Christopher. 
Uncle time with Christopher, great medicine!

As the night went on I started to get nauseated and then then sick. From there I went up to my room and they all went down to let Christopher swim and have dinner at the pool. So, let's just say from then, it has gone from bad to worse. I made it through the night and back on Sunday to COH to get my last round of chemo for this week, still very sick and feeling lousy. Well, there was a lot of "observation" and not much action or treatment. Set home again, in order to return for an added appointment to get what is called IVIG. It is a blood product that helps boost my low count of immune stuff that should be in my blood. So on Monday, I received more blood and somewhere between 10am check-in and 6pm while receive another 2 units of blood I spiked a fever. I had chills like I have never had before and because of the fever I didn't receive what I came in for the IVIG. What I ended up getting was "admitted" and have been in-patient since. (Note: my biggest frustration is that all of this is happening while my Doctor is out of the office at a seminar, so I have been observed by doctors that really don't know my history and are doing their best to get this under control)

I have been treated with various antibiotic. Ones that fight thing from bacteria and fungus. Today, my fever is down and I did receive the IVIG and am still getting IV antibiotics with the hope that it will all work together to get me stronger and out of here for my 23rd birthday on Monday.

Not much good news I realize and as my dad would have said. "it is what it is".

until next time...blessings!

Here are my numbers:
WBC: 0.5
RBC: 2.88
Hemoglobin: 9.0
Platelet: 36