Five and DONE!

I am happy to report that I had my last Lumbar Puncture with chemo injection this past Wednesday. Sweet! Five pre-BMT and five-post BMT - enough is enough already. They always make me feel a little loopy for days afterward and I found out that it takes a full 3-4 weeks for the effects of the chemo to wear off. Good to know since I have been fretting about why I am off-balance, tripping over my own feet and unable to concentrate. I sometimes go into a store by myself and get so overwhelmed that I have to leave. But the good news - all of my results indicate that there is no cancer in my spine or brain. The other good news is that my last bone marrow biopsy (Oct. 14th) indicates that I am still 100% donor, so it sounds like I have met and passed another major milestone. My next oncologist appointment is Nov. 19th and then again on Dec. 3rd.

For all intents and purposes, my life is slowly but surely getting back to normal. Well, at least what is normal for me now. My hair is growing-dark in spots and gray in spots, and very unruly. I've spent a small fortune on hats because I'm always cold and wonder what it will be like when winter actually arrives. I wear long under ware everyday. I go to bed early and sleep about 8-10 hours a night - that is if I don't have insomnia. My fingernails are rutted and off-hue. I love spending time with my friends and family. Every minute is precious. I can wear contact lenses for short periods, but shouldn't bother to get my eyes checked or new glasses for another 6 months. My vision is sometimes blurry. I worry my leukemia is going to come back. My facial skin has a mind of it's own! I can go to the dentist, but take 2000 mg of Amoxicillin 1 hour before each appointment. I am very calm. I am still taking that foul tasting, very expensive antibiotic, Mepron. I get tired a lot. I have a lot of stomach discomfort. My skin is flabby from no exercise. I have lost lots of weight. I'm down 2 sizes now. My boobs have disappeared. I'm worried that my organs won't be able to stand up to the challenges of chemo. I hate wearing a wig. I've given up alcohol for the most part, but treat myself occasionally to a glass of wine. Coffee, tea and club soda are my new best friends. Damn! I have no strength and find carrying stuff difficult. I shouldn't hug people like I do - it's flu season. I've stopped going to Ravens games. My finger tips go numb. It takes me twice as long to do anything. My chemo tan is fading. Oh, did I mention I get tired a lot? I can now take one aspirin if I get a headache. I don't sweat anymore. I'll be able to color my hair after 1 year. I am grateful everyday.

Can't Believe It's October Already!

Wow! Where did September and the first 12 days of October go?

The last few weeks, while busy, have been good in regard to how I'm feeling. I have been enjoying my renewed energy level and my good health and am probably pushing things a little too hard. While all that is wonderful news, I still must exercise extreme caution - cold and flu season is upon us afterall. On my last oncology appointment on Oct. 1st I was given a flu shot and told there is no guarantee it would work, but it certainly won't hurt to have it either. I may or may not be given the H1N1 shot. Dr. Carraway is very happy with my progress. My next oncology appointment is Oct. 23rd.

This week I'll get Lumbar Puncture #3 and a bone marrow biopsy. The biopsy, along with some extensive blood work, is part of my 6-month post-bone marrow transplant which is actually Nov. 26th. I have a lot to be thankful for this Thanksgiving, that's for sure! My last two LPs are Oct. 21st and 28th.

My hair is still trying to find its proper place and my chemo tan (in hidden cracks and crevices) is beginning to fade. I am attempting to do some walking to build up muscle tone (of which I have absolutely none right now) and am working on getting my facial skin back to normal. The chemo, the meds, the weight lose, and the transplant have left my body in complete disarray! No part of me knows quite how it is supposed to "act". I have this mental image of one body part talking to it's neighboring body part saying, "Well, we managed to survive, but how the hell do we get back to normal?"

We're Back!

We're back from our trip and although it was wonderful spending time with Ray and not thinking about my disease so much, I'm glad to be back home sleeping in my own bed.

My hair growth seems to have taken on a life of it's own. It often reminds me of a man's straggly beard, with each tiny strand sticking out every which way. If it wasn't so daggone unattractive, it would be funny! Same with my eyebrows. I need a trip to the beauty salon.

My next oncology appointment is October 1st. I am looking forward to seeing Dr. Carraway since she is back from maternity leave. She will probably schedule my 3rd Lumbar Puncture for the same day.

I am feeling fantastic and am so grateful to be able to say that. I ran into some friends this afternoon whom I hadn't seen for quite some time and who were unaware of my diagnosis. As I was relaying to them all that had happened, I was reminded how incredibly blessed I am. I, or possibly Ray alone, could easily be telling a much different story. Instead, my story is full of hope and plans for the future. I'm grateful for the moments, those little reminders, of what could have been - it keeps things in perspective.

Still Traveling

Ray and I are still traveling and having a great time. The weather has really cooperated and we've settled into this perfect rhythm even though we're in a different motel every night. I'm getting lots of rest (we're not rocking out the town by any means) and usually take a cat nap in the car each day so all in all the trip has been relaxing and calm. We went to Mackinac Island today which required a ferry boat trip and lots of walking, but I did just fine although tonight I am beat and will be in bed early. At least Ray has Monday night football to keep him company.

Getting Better and Having Fun

Last week was Lumbar Puncture #2 and yet another "position". This time Dan (the Physician's Assistant) had me lay on my side and pull my knees up to my chest as high as I could, i.e., the fetal position. It was very comfortable. He said I must be a real veteran when I didn't even flinch. After 7 of them I guess I am a veteran. My next appointment with my Oncologist is Oct. 1st.

I am feeling really good and have been given permission to join Ray for a 2-week business/pleasure road trip. We are in Pittsburgh as of this writing and will continue to Ohio, Indiana, Illinois, Iowa and Nebraska (just the northern borders). That's the business part. The pleasure part comes when we head north through Wisconsin and Minnesota to Canada (Thunder Bay), then back to the US to Michigan (Mackinaw and the Upper Pennisula) and then back to Canada and Niagra Falls and home through Buffalo, etc. I am very excited to see it all as I've never been to that part of the country or to Niagra Falls which has been on my bucket list for a long, long time. We'll also see 3 or 4 of the Great Lakes - awesome!

I was kinda surprised that I was allowed to leave for 2 weeks, but the docs and nurses at Hopkins believe that a big part of the healing process is allowing their patients to have fun and get back to doing normal activities as soon as possible. I agree with that philosophy. People need other people and things that bring them joy, to be out among the living and get involved in life again instead of worrying about their disease. Of course I have to be careful and use caution when necessary - we are afterall, entering the flu season. See ya soon!

Day 100 Approaches

Tomorrow will be Day 100 post-BMT. I can hardly believe so much time has passed and so much "stuff" has transpired. It's truly been an amazing journey thus far and I'm happy to report that I am feeling really, really good. It's as though the Leukemia gods have finally accepted the fact that nothings going to break my stride and have released me from my suffering.

This past weekend was fantastic. I spent some good quality time with loving family and friends - we all know that can never hurt the healing. Tomorrow I visit the Doctor for a routine appointment and then nothing until next Thursday, the 10th, when I get my 2nd Lumbar Puncture. The fluid retention issue is under control and I can get my shorts buttoned again - as a matter of fact, they're down right baggy! So things are looking up - I'm feeling stronger every day and my new-found activity has slowly helped me to rebuild some of my lost muscle tone.

Lumbar Puncture #1

I had my 1st of 5 Lumbar Punctures with Chemo Injection yesterday and I must say, things are handled very differently post-BMT!

Before my bone marrow transplant I was given something to relax me, then I was taken by guerny down to Neuro-Radiology and put on a tilting table to make needle entry more precise. This was all done with Radiographs so the doc could see exactly where to insert that very long needle they use - not too far so that he would hit a nerve and not too little so that he wouldn't be able to get enough spinal fluid. Yesterday, my LP was done in a small room where I sat on the side of the bed and leaned over a bedside table with no drugs (only topical) and no guerny. I was left to rest for one hour in a freezing cold room with only a thin sheet. Wow, what a difference a bone marrow transplant makes! I came right home and laid in bed on my back for about 8 hours - don't want no stinkin' spinal headache! Really though, it wasn't so bad and was over before I knew it. I don't anticipate that any cancer will be found in my spine or brain. Only 4 more to go. My next one is Sept. 10th.

I am feeling pretty good today, which is always nice at the start of a weekend. My fluid retention problem is still around, but is much better. My nausea is at bay. Things are looking up!