Not a Fun Ride

Just wanted to add a short update... I am doing OK considering all things.

I do have a lot of mouth sores but since I am on special medication I'm not dealing with another yeast infection in my mouth. The bad thing now is that my mouth is very sore and my gums are very bloody. (I don't have blood gushing out but since my platelets are low the blood isn't stopping like it normally would). It's not fun but could be much, much worse.

In addition, I have been suffering from extreme fatigue and have found it very difficult to eat. Last time, this was the worst part of my treatment. I fully expect in a week to a few days I will be doing much better.

My nightmare

Before I get into cancer talk, let me share some good news on the music front.

Tuesday's USA Today had a story about a dance track from Robbins Entertainment that has made it's way to #14 on the Billboard Hot 100. The track is situated next to Will Smith and the new American Idol Carrie Underwood. The interesting thing about the track, a remix called "Listen to Your Heart," is that is was discovered by one of the record label mailroom employees. He took the song and played it for the president of Robbins and the rest of history.

Read the article here: http://www.usatoday.com/life/music/news/2005-07-25-dmt_x.htm

Now comes my involvement in all this. Last year, at the Billboard Dance Music summit, I so happened to meet a mailroom employee for Robbins Entertainment. It turns out he is the same one that "discovered" the song that has become a hit. I emailed him yesterday and he wrote me back offering to help me and my music however he can. Once I am better, I will count on him to get my song to the Robbins record label execs. I am not counting on a Billboard Hot 100 hit, but a record deal would be nice. If not Robbins, I know one of the dance labels is going to pick up this song.

Now to my terrible hospital stay. I guess the best way to do it is by a timeline:

Saturday, 9AM: I call the nursing supervisor. She tells me there is a "national methotrexate shortage" and there is no reason for me to come in.

Saturday, 1000AM: She calls back and tells me that they now have the medicine.

Saturday, 1130AM: After waiting over 1 hour to get registered, I am finally in my room. I get some blood drawn and they start me on IV-fluids.

Saturday, Noon: I give my first urine sample. My urine has to be at a certain PH to be able to start treatment.

Saturday, 2p: I give my second sample.

Saturday, 330p: The nurses have changed shifts.. I ask if we have any results back. She checks and says that my PH level is good but she has a patient with low blood pressure and can't start my treatment yet.

Saturday, 6p: I finally start treatment. It goes on for 24 hours straight.

Sunday, 9p: I end up finishing the chemo. But have to stay for the recovery drugs. I get these every 6 hours.

Monday 6p: Blood is drawn to see if the methotrexate has cleared my system. I am told by my doctor if we don't have the results by 10p, I will have to stay overnight in the hospital.

Tuesday 7a: The results came back overnight, but the methotrexate levels are still too high for me to be discharged. More blood is drawn.

Tuesday, Noon: Blood is good. I am discharged and have to walk over to the doctors office to get a Neulasta shot.

Tuesday, 1p: The hospital had taken it's time with the blood and urine tests which made me have to stay longer than I should have. My doctor had offered to "take care of me" and order a cab to take me home.

Well, the cab company the doctor's office called was terrible. Didn't speak English. No air conditioning. A nightmare.

I went back to the doctor's office and told them here I had been in the hospital for 4 days and needed to get home. They offered to call another cab company (and even wanted to drive me home but the evil office manager wouldn't let them).

Thank God only one more month of treatment. I have been pretty sick but hanging in there.

I have called my doctors office, insurance company, and the American Cancer society and NONE of them could recommend transportation services. 

I actually am smiling right now. It's just amazing that here in the USA the medical community, with all is millions of dollars, is so behind. My insurance company has offered to pay for airfare and lodging at one of their approved cancer centers. If I have problems in the future (God forbid) I may need to take them up on the offer.

Congrats to Lance Armstrong. Seven times winning is amazing.

5 down, 1 to go

I am back home from my 5th time being admitted to the hosptial. Don't have the energy to write about it today, but will try to tomorrow. Today turned out to be a day I will never forget.

Tough Times

Yesterday was a very tough day. Today, I am doing better but still don't feel very well.

I went to the docs office yesterday morning and everything seemed fine. I came home and around noon I noticed I was getting a migraine headache. (This was much different than the spinal headache I had because lying down did nothing).

I've only had a migraine this bad in my life once and I think I was 15 or 16 and in the 10th grade. My mom had to pick me up from school and on the way home, we had to stop at a church parking lot while I puked my guts out. That may have been over 10 years ago, but I remember that migraine as if it were yesterday.

So back to current day. The pain was so intense I was literally calling on God to save me from this pain.. I just couldn't handle it or do anything. Not too long after, I ended up vomiting and I have never threw up so much in my life. No other word for it but "disgusting." I had vomit coming out of my nose and it was terrible.

Thank God the migraine went away and I didn't feel well but didn't have any more problems the rest of the day.

Today, I feel nauseated again. Trying to keep my spirits up but I am sick of being sick. Enough is enough.

I am back in the hospital tomorrow. I probably will not be home until Tuesday. The great news is that once I return back home, I will only have 6 days in the hospital in mid-August and should be DONE. Please continue to pray for me.

Cytoxan, no more

My last post should have read "THIRD CYCLE UNDERWAY."

Today was my fifth and final treatment of the chemo drug "Cytoxan." Don't you just love the way it sounds? It's almost as good as calling a drug "Toxic" or something.

I spent this weekend in the hospital getting treatments since of course the doctors office is closed on the weekends. More run around from the hospital. This time, too many nurses were on vacation so I had to wait until the afternoon to get anything done. They only had one nurse who was chemo certified so I had to wait around for her. Anyway, I finally made it through and was back at the doctors office this morning.

Feeling OK so far. I wouldn't say I feel "good"--but doing everything the 2nd time around has been a bit better. I know what to expect more and I know what do when something goes wrong. I found out on my own that one drug they were giving me for nausea actually made me sick--so this time around I am not taking it and doing better.

I head back to the hospital this weekend for the 24 hour drip of methotrexate. Let's hope that this time isn't so bad and they get me started on time. (It's a pain because I have to give a urine sample every single time I go to tha bathroom). I only have 2 more hospital stays so I am really looking forward to that.

Saturday, at the hospital, I had another spinal tap and so far no spinal headache from that. So overall, I can't complain, this certainly is not turning out to piece a cake--but it's something I have been able to handle. The hardest part is keeping your spirits up when you feel so bad. Call me conceited but I think to myself: "most people out there really wouldn't have the guts to handle something like this. Even those who think they are really tough."

By the way, I haven't really lost any weight so besides the fact that my hair fell out, if you saw me, you probably wouldn't notice I looked that much different.

2nd Cycle underway

OK.. sorry it's been 10 days since I have updated the blog. After the spinal headache got better--I started feeling much, much better. And to be honest, when you feel good, thinking or talking about cancer or being sick is something you just don't want to do.

I started the 2nd cycle yesterday and was back at the doctor's office today. Basically I am just doing everything over again. It feels comforting knowing what the drugs are and how they make you feel. One of my nurses warned me--and I have already began to notice that nausea will be more of a problem the second time around. It comes and goes--one hour I feel sick and the next I am fine. And it seems to be worse late afternoon/evening.

Yesterday I had another spinal tap and it was quite an experience. The antisteiologist (sp?) was trying to prevent another spinal headache so he used a smaller needle. But the smaller needle wasn't working properly so he poked and numbed me about 2 times before poking me again with a larger needle. He took a sample of spinal fluid that will be tested for lymphoma cells. Last time it was tested it was A-OK so hopefully the same thing this time around. When the doctor administered the chemo through the spinal needle, there was a tremendous amount of pressure.. but it subsided after he was done. I am hoping I don't get another spinal headache. But spinal taps and spinal headaches are not something you can go around worrying about. They are part of the treatment and you just have to make the best of it. Only two more spinal taps left.

I will be back in the hospital this weekend. And back next weekend. For those of you praying for me, I would like to ask that your prayers be focused towards me breezing through this 2nd cycle and that once it's over in late August.. I will test negative for any lymphoma cells. I want to be cancer free! If that happens, doctors will deem me "cured".

Doing better!

After a very difficult one week and 4 days.. my spinal headache is finally gone. It feels great to be able to stand up!

More good news.. an update on my left arm. I have been doing exercises recommended by physical therapists and now have full range of motion back in my arm.

So things are doing pretty well. I still feel ill at times, but all things considered I am doing great.

Thanks to everyone who has sent cards or offered words of encouragement. They have meant a lot to me.