I'm Here!

Well, I'm here and ready to get this party started even though admittedly, I'm scared to death! Fortunately, I had my Hickman replaced yesterday without incident. A little extra sedation and my new hypnosis techniques helped a lot. I will remain on 750 mg's of the antibiotic, Cipro for 3 or 4 more days.

I'm settled in my room awaiting my first dose of Busulfan (or Myleran), which is one of two chemotherapy drugs I'll receive during my 6-day prep. Busulfan slows or stops the growth of fast growing cells such as cancer cells and bone marrow cells (hair has fast growing cells too). It is given before bone marrow transplants in very high doses to kill cancer cells and to make room for new bone marrow to grow. I got it in pill form - 29 teeny tiny pills that are distributed in 4 clear capsules with 6 tablets in each and 1 clear capsule with 5 tablets. After this first dose I'll have approximately 10 blood draws in two-hour intervals to insure that my body is getting the correct amount. For this first dose, I can't eat or drink anything for 2 hours before taking Busulfan or 2 hours after because food changes how quickly it gets into my blood stream. Today I stopped eating/drinking at 3:00 PM with the expectation of getting the Busulfan at 5:00 PM. Not! Instead I got it at 8:30 PM - guess there'll be no dinner for me tonight.

Not everyone has side effects from Busulfan, but it's possible that I may experience nausea or hair loss as I receive it over the next 4 days. I have been given and will continue to receive an anti-nausea drug as well as an Adivan to help relax me. Another side effect of Busultan is that my skin color may darken, especially in areas where skin touches skin. The darkened skin color will gradually disappear over time. Very high doses of Busulfan can very rarely cause seizures so I'll also be given a drug called Dilantin to take before, during and for a short time after taking the Busulfan. So, your guess is as good as mine in regard to how things are going to go for me - every patient reacts differently. I'll be sure to let you know! More to come on Cytoxan, the other chemo drug I'll be getting in a few days.

Weekend Update

Let's just say, I like to keep it interesting! Went for my IV antibiotic today only to learn it will be my last. Seems my infection has been identified and can be treated with a $12 oral antibiotic I am already on. Thank God! I am constantly amazed at how well things have worked out for me. My transplant date is secure and I am feeling blessed. Please join me in one big sigh of relief!

The wig selection, however, did not go as well. There isn't a manufacturer around that could possibly replicate my thick, kinky hair. All the styles are sleek and smooth - the hair I've always wished I had. Guess now is my chance. I think I need another set of eyes to help me decide. That's a job for another day.

SNAFU #2 Update

I went to see Dr. Carraway this morning. My blood cultures have already begun to grow a gram negative rod infection of some sort, but will take several days before the organism can be identified. She has taken me off one of the oral antibiotics (the $70 one, not the $12 one,of course) and has opted for a different IV antibiotic because it will enter and get to work faster than oral meds do. So, I'm back in clinic everyday, at least until the organism can be definitively ID'd. Here lies the problem - I am to be admitted in 6 days to start my prep prior to transplant. If there is any possibility that this infection is still in my system they will postpone my transplant. While I totally understand the rationale, I am so bummed I can't stand it. This is not the SNAFU #3 I was considering.

This afternoon I met with my transplant doc, Dr. Javier Bolanos Meade. We talked at length about the side effects of transplant and all the nasty stuff that can happen - more to come on that later. We also signed all the necessary consent forms and am proceeding as if all will go according to plan. I like the positive energy that evokes.

Tomorrow I'm back to clinic for IV antibiotics and to Image Recovery for wig selection and fitting. Blonde, redhead? Hmmm!

SNAFU #2

Well, we managed to get past SNAFU #1 - Brad came back to Baltimore and got his bone marrow biopsy today. Things went well.

SNAFU #2 - The last two nights have been very unpleasant for me. After getting ready for bed and flushing my Hickman Catheter with Heparin (a daily chore) I became extremely cold causing uncontrolable shriving for over an hour. I was so cold, nothing could warm me up - it was very scary. Come to find out I probably had a bacteria infection (here we go again!) on my Hichman line and by flushing it I inadvertently forced the organism to circulate through my body. So, after a stern lecture from my sister-in-law and Dr. Carraway about the importance of reporting things aren't quite right, I had to have my Hichman removed and blood drawn from it and also from another site in order to have cultures done. All of my blood counts are fine, but it will take a few days for the results of the other blood work and cultures to be available. I am now on two antibiotics and am seeing Dr. Carraway tomorrow, unsure when they'll place my new Hichman - I'm going to need it very soon. OK, so things happen in 3's right? One more small SNAFU is acceptable, then no more! Keep your fingers crossed.

Brad's Bone Marrow Biopsy

Sorry to report that Brad's bone marrow biopsy had to be postponed. Our case manager neglected to tell him to stop taking one of his medications four days ago! Hence, the doc refused to do the test. Poor Brad has to fly back on Wednesday to have it done then. It's the little things! If this is the only thing that goes array, I am grateful.

Pre-Transplant Testing

The last few days have been very busy with pre-transplant testing. I don't think there is one crevice, orifice or organ in my body that hasn't been examined - closely! The first day I was at JHH almost 9 hours, the second day 4. I have two more days of appointments - 14th & 18th and then I am done! One of the appointments was to meet with a JHH Social Worker who talked about Living Wills and Advance Directives. Another appointment was a Bone Marrow Education Class (that's a whole blog post in itself!). Boy, did I learn a lot! Reality has hit - I have cancer, it's not going to be easy, and it's going to take much longer than I anticipated. Hope you all are prepared to hang with me for the long-haul!

Between appointments I wandered into the Image Recovery Center to look at wigs, scarves and hats. I purchased two simple caps (similar to what a newborn might wear - I'm told I'll get cold) and two stylish scarves that can be worn by themselves or under a hat. Up until Tuesday I wasn't sure if I would lose my hair or not, but have since been assured I will (head, forearms, eyebrows, lashes, pubic) as a result of intense chemotherapy. So, not only have I decided to get my hair cut yet again (really short this time) I have also decided to purchase a wig - my insurance will pay up to $350. My initial consultation is on the 14th.

Brad is in town getting his testing done too. The worse part for him will be getting a bone marrow biopsy this afternoon. My advice - get conscious sedation if offered. We've had a nice time hanging out and he'll head back to Tampa tomorrow afternoon.

Yesterday I met with a hypnotist - Debbi, who is a dear friend of my daughter Stephanie. She is working with me to help manage the stress and anxiety associated with my illness, as well as nausea, pain, sleeplessness and anything else that may arise. We have two more sessions scheduled, but I have already been able to practice and use some of her techniques to help me get through a very unpleasant bout of illness last evening.

For some reason I became violently ill with flu-like symptoms that lasted about 3-4 hours and just as quickly disappeared. At first I was worried, but when a fever didn't manifest, I realized it must have been something I ate! Anyway, I am feeling pretty good today (just this lousy headache still) and am off to the dentist to get a temporary crown replaced that fell off! My numbers are all good except my white counts (infection fighters) which have dropped from 6600 to 3380. Not sure why they are falling now, but hopefully will continue to hold for just a while longer.

The Last Few Days

I have been suffering with a small headache the last few days and am wondering if this dreary, rainy weather has anything to do with it. Fortunately, if I lay down it dissipates at least for while.

I am anticipating the battery of tests I face this week and of course, having my brother here to also begin his testing. It will be good to know for sure that are bodies are able to support the tremendous burden we will be asking of them in the near future. As the day approaches I am growing more and more anxious about so many things. I hope you'll continue to keep me in your thoughts and prayers as I enter this next phase.