More on spinal headache

I still have the spinal headache. I need to write quickly because I will have to lie down. So long as I am not standing or sitting I am fine.

Went to the doc yesterday. He said they can do something called a "blood patch" which will stop the leakage of spinal fluid causing my headache. The problem is, since my last treatment, my platelets have dropped too low for me to have the "blood patch" done. One possibility is to have a blood transfusion, but my condition is not that serious.

So I am left a) waiting for my body to fix itself so the headache will go away, or b) wait until my plaelets rise enough so I can have the blood patch. I am pretty much bed ridden and can't sit up for more than 15 mins or so until then. It could always be worse but this is no fun.

Spinal Headache

Sorry, it's been awhile since I've written. I will have to make this one quick.

I thought I was doing so good until Friday evening, when I got a headache. This was not a normal headache, but not a migraine. I noticed the only way it would go away is if I was not sitting up (I had to lie down). It basically feels like your head it going to explode and is related to having a spinal tap.

It's now Tues. afternoon, and the headache remains. So long as I am lying down I feel OK, but when I stand or sit up, the pressure starts to build. From what I have read, it can take a week or more for these "spinal headaches" to go away.

I am going to the doc tommorrow and will get another Rituxan treatment. This headache is terrible, until it goes away, I really can't do too much of anything.

Back from hospital stay #3

Well... I made it. 6 days at the hospital and I'm able to talk about it.

Overall, it wasn't too bad of an experience. The great news is that while I still have to go to the doctor's office for Rituxan--no more chemo for 3 weeks! I am sure my body will be thankful. Then I just do everything I have from the beginning and then I am DONE.

My main side effect now is just feeling nauseated and lack of appetite. I don't know if it's that I feel good or I've just gotten used to feeling bad that I just kind of accept it. I also have lost feeling at my fingertips and feet.

Again for this hospital stay, it took them hours to get started. Once they gotted started everything went fairly smoothly. Some of the nurses are much better than the others.. and I really worked hard to keep all of them on their toes. My treatment was very detailed and confusing, and I had to make sure they made no mistakes. One nurse told me that I thought her a lot! Ha...

Last night, I got very angry with one of the ladies that work at the front desk at the nurses station. When you hit the nurse call button, she is supposed to answer it and let the nurses that the patient needs attention. Well, this one lady takes her time answering (often times more than 30 mins), and has hung up on me several times without letting me finish my sentence. I got so mad, I ran down the hallway and practically screamed at her to start doing her job. I had all the nurses attention.

My mom told me maybe I should calm down. For the most part, I have been much calmer since I haven't been working. But when it comes to my health and people in the medical industry, I refuse to back down. Some jobs you can get by with slacking off or taking your time, but when it comes to patient's health, often times there is no room for mistakes.  

I was on about 3 chemos a day and one protective shot which I got once every 3 hours. The experience wasn't as bad as I thought it may be, but hopefully it will not get any worse over the next week. Sometimes it takes awhile for all the side effects to set in.

What gives me comfort now is that I know what's ahead. I have been given every chemo/drug that I will.. so no more surprises. It's kind of scary when you start a new drug and they mention all the hundreds of side effects. (But if you look at a bottle of aspirin, it usually has a long list as well).

THREE WEEKS OFF from chemo. How will I be able to handle it??? :-) Thanks again to everyone for their nice words, cards, and encouragement.

No new news

Nothing new to report really. I'm doing and feeling OK. Going into the hospital Thursday June 16 for some heavy duty chemo and will be there for at least 5 days. Don't have to go back to the doctor until Wednesday. Trying to enjoy the time feeling somewhat OK before I get knocked down again.

I took this pic of myself to show the limited range of motion in my left arm. I should be able to extend it out all the way, but this is far as I can go. (Sorry I know it's not the best photo but you get the idea).

What to do

Not much new to report today.

One of the nurses from the doctors office called me today. She is really concerned about the loss of range of motion in my left arm. None of the nurses have ever seen this happen with an IV port in the arm. And none of the doctors can explain why I cannot fully move my left arm.

I've had a x-ray, ultrasound, and dye test done on my left arm. All tests have come back OK. So the question remains why can't I move my arm? Did something go wrong at some point? Could it get worse?

One option I have is to have a chest IV port installed and my arm port taken out. If that happens, I still not be able to move my left arm, but at least I know no more damage will be done. It's a tough call to make. Ignore the problem and maybe it will go away, or do something about it.

The nurses are worried about it. I still don't know if the loss of range of motion is temporary or if I will be like this for life.

Doing Better

Doing better today. I went to the docs office for Rituxian treatment. One of the nurses was really concerned that I still have limited range of motion in my left arm (where my IV port is implanted). I had a test last week and I don't have a blood clot. Today, I went back to the hospital to see a radiologist to make sure the port was not broken or leaking. Everything tested out OK. Hopefully I will eventually get the movement back in my arm.

I would say I am doing GREAT today. My mouth still has some healing to do, but getting better. And I drove my self around today. I was coming home and thought "what the heck?" I am going to go through the Wendy's drive-thru and get some nuggets and baked potato. I was able to eat the food with no problem. I ate the nuggets while I was driving. Such a good feeling of "normal" when you can eat while driving. Hard to explain but it made me feel like my old self.

When I got home, I found Hallmark flowers on the front porch from a co-worker at CNN that works in the satellite department. I thought that was very nice of her and it made my good day even better!

Finally, one more thing. I wish I had a picture to share. Today, I wore a bright green, "Green Giant" t-shirt. The nurses had wrapped my arm port in lime green wrap. I had two hospital bracelets on me (one from the doctor and one from the hospital). I looked so crazy as if I was making a fashion statement. Everywhere I went people were commenting on how interesting I looked. The only thing I needed to top it off was Paris Hilton walking beside me. It looked like she had dressed me. :-)

Finally relief!!

I am doing so much better today. I just got finished eating a bowl of chicken and rice soup. This has been the first thing outside of Boost and Ensure I have been able to eat in 6 days! I can't explain what a relief it is to be able to have food in your mouth and to be able to swallow it.

Yesterday, the doctor prescribed me some anti-fungal medication for my mouth sores. Last night, I noticed one of the white patches had already shrunk in half. The medicine is amazing. I wish they would have given it to me sooner. Now it feels like I have a sore throat but that is something I can live with and I am sure in a few days that will be gone.

The big thing was that I was running a fever and that made me feel terrible. No more fever. And I have stopped taking the pain medication as well. I am actually able to sit around and watch TV, laugh, and feel somewhat normal. I still don't feel like "myself" but I am a million times better than I was. Thank you everyone for your prayers. They worked.

These are all the medicines I have been taking over the past weeks. The bottle on the front left side is the anti-fungal medication which is finally healing my mouth!

The Nitty Gritty

I have not been feeling well lately. Sorry for being graphic but let me give you the "nitty gritty."

The mouth sores in my mouth are actually an oral yeast infection. The GOOD bacteria that is usually in my mouth that would kill off such things has been destroyed by the chemo.

My case is very bad. I am still on a liquid diet (5 days now). I finally took a look at my throat this morning and it was disgusting. About 1/2 of the left side of my throat is obstructed which is why I cannot swallow and it's so painful.

I saw the doc today and the nurses. They gave me fluids via IV and put me on an anti-fungal medication and more potent pain pill. I wish they would have given this to me LAST WEEK. Now it could still take 3-7 days to heal.

This is just terrible and I want it to be over. My body has already been fighting and now I have been running a fever, have these terrible white patches in my mouth, and can't eat. I can't really talk much either.. more just grunt.

Please, everyone pray that the new medicine that I am on will work! This is agony and has been the worst part of my treatment so far. Thanks for letting me vent :-)

Making It

I am making it but still not feeling great. The mouth sores are still bad, but they are slowly getting better. Today is the first day that I have been able to drink the liquid full 16 oz bottles of water. Before today, I could only handle a few sips or so and would have to stop.

I am trying to eat more solid foods, but mashed potatoes is about the only thing I can eat. The herbal tablets we got seem to be the thing that is really helping my mouth, but with my immune system so compromised (thank you chemo), it makes it difficult for your body to fight a simple thing. I am hoping I will be back to normal in a few days. Pretty much all I have done the past few days is slept all day.

Another day

Today I was back at the doctor's office to get some fluids in my IV. I went over to the hospital as well to have an ultrasound done. The good news is that no blood clot was found. The bad news is that my arm is still swollen and I don't have full range of motion in my left arm. The nurses want to check into it more.

And still, the thing that is getting me now are these terrible mouth sores. I took a picture of them but decided not to post it--just too graphic.

They are so bad I can't eat anything but mashed potatoes and eating Boost and Ensure to stay alive. I am on some prescription mouthwash but it doesn't seem to be doing much. On the way home, we stopped by an herbal store to get some herbal medicine for mouth sores. I told my mom I am so desperate.. even if something doesn't work I rather try it out. But who knows, the herbal medicine I got may actually make me better.

At least no chemo for awhile.

Another day down

Today it was back at the hospital for another spinal tap. I had chemo placed into my spinal column again. I am being treated as if lymphoma cells are there.. just as a preventive measure.

The big problem of today was MOUTH SORES. I have so many sores in my mouth and all down my throat that it gave me a fever and made me feel terrible. I have white patches all over the place and it makes it difficult to swallow and eat/drink.

After having my 2nd spinal tap (which was really not bad at all) I had to go back to the doctors office to have some fluids given to me via IV. (I can't swallow to drink enough). I was given some painkillers and more medicine for my sores. Hopefully they will go away soon because if it gets to the point I cannot swallow at all.. I will be admitted back to the hospital and have fluids in my IV and worse case scenario have a feeding tube. But I don't think it will have to come to that.

My nurse today noticed the arm that has my IV port was swollen. We also noticed I don't have full range of motion in my left arm. So tomorrow, it's back to the hospital. It looks likely I may have developed a type of blood clot. I don't have any pain or anything in my arm but it feels weird not being able to move it all the way.

The excellent news for me is that I have pretty much made it through th first cycle of treatment. I will have to go to the doc office every week for Rituxian, but it doesn't have the nasty side effects of chemo.

If I can just manage these terrible, painful mouth sores and continue to eat something, I will be OK. I have already lost 10 pounds in one week and don't want to lose to much more.

I'm trying to keep my smile... I got my haircut really short before treatment so it wouldn't all fall out.. but so far I still have my hair. This is me 2 weeks after intense chemo!

2 weeks down

Hard to believe it.. I have made it 2 weeks into treatment.

My mom was suppose to leave and go back to Tallahassee, but I had to ask her to stay. This morning I felt so bad I couldn't even wake up. I had to take a shower, rest. Then go brush my teeth and rest. I had to wait awhile until I could get dressed and putting my jeans on seemed next to impossible.

I somehow made it to the car and in the doctors office. All of the nurses had to see me and everyone could tell that the treatment was finally catching up with me.

New side effects I have (besides feeling very ill) are mouth sores and acne. During my teen years, I had a little acne, but never anything like this. I have it all over my face, my head, and my shoulders. I look like I am 15.

My mouth is very sore (my taste is long gone) and it's hard to eat. I have a sore throat on my left side which makes it difficult to swallow.

I probably feel better NOW than I have for days. This morning it was hard work just to keep my head up or talk.

This is going to be a long ride. At least I will have a cure at the end, but most cancer patients get chemo every week or so and this nearly everyday thing is taking a toll on my body.

Tomorrow I have another spinal tap and will get chemo in my spinal column. I really don't mind doing it. At first, the spinal taps were something that I dreaded but they really aren't that bad when you have a good antithesiologist (sp?) doing it. And it only takes about 15 minutes.

The really good news is that after tomorrow, I will not have any chemo until June 16 when I am admitted back to the hospital. I will have to continue going to the doc to have my blood levels checked and have Rituxian treatments. But I can handle that. Basically the way my chemo regimen works is that they nearly poison you to death then give you a week or two of nothing so you can recover to be poisoned more.

I still have a good attitude, but I think anyone in my situation would be going through the same type of emotions and just want to feel better and have this over with. At least I am making progress.