May 29, 2007

I cut myself shaving my legs today, just a tiny nick, but I forgot about the platelets needed for clotting. It took 10 minutes to stop the bleeding, but the tight double bandage did it (plus an elevated leg on a pillow and some help from Marilyn). It felt great to take my first shower since I started my hospitalization finally approved by IPOP nursing since my central line dressing was changed. Day 2 in IPOP was similar to day 1 with hydration, but I also needed a bleeding central line cleaned up. It was covered up nicely. The nurse gave me some great lotion for the itch around my neck. What a great change! Also, she switched my necklace holding the central line cord from the cheap metal to fabric. What a big difference in comfort level. The strangest thing today was that the root beer that I had with my lunch tasted like the greatest drink ever. It worked like pain medication; no kidding.

May 28, 2007

I started out-patient care today. I was at Johns Hopkins for4 hours. My first trip back to IPOP they gave me two bags of hydration due to a racing heartbeat. I felt better afterwards. Back at the hotel, Marilyn cut my hair, which was phase one of shorter hair to get ready for the wig. It looks really cute, which is good, since it will take a long time for my regular hair to grow again. I'm very itchy near the central line site on my chest and on my neck. My white blood cell count is declining, but that is what is supposed to happen at this point. I was able to eat some food today.

May 27, 2007

I got to leave the hospital today with my family. It was so exhausting getting the prescriptions and getting to the hotel. It was so hot with the mask on that it was even more difficult. I'll be staying at a nearby hotel for the next few weeks as I continue with daily treatments now that the HiCy is complete. I'm very weak and nauseous, so I'll stay in my room until I return to Johns Hopkins for outpatient treatment tomorrow. When we got to the room it felt great to lay on a comfortable big bed. I'm so tired but I called Kathy and she said she needed every bit of strength just to go to and from the IPOP each day. She's so reassuring, telling me it was the same for her too.

May 26 2007

Today was the last day of the HiCy Chemotherapy. I vomited four times, but then felt a little better. My husband and daughter flew in today and visited me in my hospital room. I was so drugged up that I could barely keep my eyes open. They understood . . . ."no pain, no gain."

May 25, 2007

I've had a headache for 2 days, but that is related to 2 things. Number 1, the chemo is strong but also, they never let me sleep more than 2 hours at a time. It would be nice if the different people checking vital signs (oxygen level, BP, temperature), changing IVs (promptly responding to beeping machines or knowing what time to respond ahead of time), checking my weight twice a day and asking for urine samples coordinated things better, so I could get more sleep. If more things were checked at once during the night shift, it would be a better experience and I could get more sleep.

May 24, 2007

10:45 am - I am so tired, I think this is a good time to catch up on sleep, while no one needs to check on me. I've got to sleep while I can.

11:15 am - cancel that idea. I can't sleep because I'm starting to feel nauseous. My stomach and head hurt. My nurse just gave me 3 different meds to help. Dr. Brodsky came by and said that this was expected and reminded me that 36 hours after my first dose these symptoms would be gone. He had a big smile on his face and said "Hang in there, we'll get you through this." Six more hours until round 2 of the HiCy is scheduled to start. That should be interesting. Until then, I'll keep the ice packs on my stomach and head (they seem to help with the nausea).

4 pm - After eating saltines and ginger ale for hours, I walked some laps of the area with my nurse and then she hooked me up with dose number 2 of the HiCy. I'm laying here trying to be distracted while watching TV feeling queasy.

7:40 pm - round two of the four daily chemo sessions is done. I actually ate dinner during the infusion. The yummy chocolate chip cookies made me feel better. Now I'm so tired but feeling good about having made it through half of the chemo.

May 23, 2007

My central line was put in at the surgical suite and I didn't feel a thing. They gave me great drugs and I slept through it all. Now I'm in my hospital room and so happy to be here. Seriously, I am psychologically ready to start the chemo. Dr. Kerr and Dr. Hammond came by to see me (even though I'm officially admitted under hematology/oncology not neurology). It wasn't to examine me it was to visit and see how I was. They asked how my family was coping with all of this and talked about a variety of fun and interesting things. It feels great to not only have the smartest possible doctors on my case, but also to have them be so genuine and caring.

Dr. Brodsky came to see me to let me know that all the medication had been ordered to go along with the HiCy. The only problem is it took several hours for the pharmacy to make my special dose. So 8 hours after arriving in my hospital room, my central line is finally attached to the first phase of my infusion. For 2 hours, I got a bag of fluids to hydrate me, then I got a drug that coats the lining of my bladder (so it doesn't bleed away/a side effect of HiCy, which needs to be prevented rather than treated). After that I got the anti-nausea anti vomit meds shot into the central line. Then before midnight I got the first dose of the HiCy chemo. The only side effect I feel so far is a burning sensation in my nose, like when you get too much hot mustard at a Chinese Restaurant.

I don't expect to get much sleep tonight, my nurse has to observe me during the beginning of my first official dose of HiCy and keep waking me every couple of hours to make sure I'm OK.

May 21, 2007

Today was exhausting. My first appointment was at 8 am to get four more vials of blood drawn. I had 16 vials drawn last week. I had my pre-admission consult with Donna Dorr RN and Dr. Brodsky (my Oncologist). We reviewed the risks involved and I signed the consent forms. I actually really didn't read them, because they were full of nasty looking possible complications that I don't want to think about. It sounds like there is no way I'll get through this without several transfusions. Dr. Brodsky asked me if I felt nervous and I told him that I was more nervous about what would happen to me if I didn't do the HiCy (High Dose Cyclophosphamide).

Next, on to the Admissions office to sign more papers and to agree to the "what ifs?" After that I went to meet with nurses at the IPOP (Inpatient Outpatient) center. They will be my lifelines after I finish the 4+ days on the high dose chemotherapy. Everyday, I'll be escorted back to Johns Hopkins (from the Tremont Plaza Hotel nearby in Baltimore) for "chemical cocktails", transfusions and check-ups. Today a nurse explained how they will surgically implant my central line and I was definitely woozy just listening. How can two tubes be threaded down a vein under my neck and out my chest? They "reassured" me that they will give me a lidocaine shot to numb the area and something to make me relax. I'll try not to hyperventillate and I'm definitely planning on closing my eyes.

The day finished off with my first official EDSS baseline testing. That will be used to compare to results at follow-up appointments beginning three m0nths after I leave Baltimore. That was the most comprehensive neurological exam I've ever had. I did quite well on the math and memory tests, reasonably well on the manual dexterity (putting little pegs in and out of holes) and horrible on the motor, reflexes, vibration detection (from my knees to my toes), balance coordination and 25 foot walking speed. My guess is that I probably got a 5.5 from the way the doctor was reporting my results to his student watching my pathetic performance. Oh well, that's why I'm here. If I was closer to a "0" (normal neurologically) on the scale of 0-10 , I wouldn't be in a Neurologist's office. The other patients before me have lowered their EDSS results. No promises can be made to me, but I'll try my hardest to believe in this hope.

May 20, 2007

I am on my way to Baltimore, sitting on the plane with a mask on. Of course, the doctors were right and there is coughing toddler across the isle. I'd love to remove this mask, since it's so hot to wear, but I don't want to delay starting my treatment any longer by catching something.

The absolute worst part about leaving today was all the crying my kids did while hugging me over and over. Jessica kept saying "I don't want you to go." It was so sad.

All I can think of now is how much I want to get started, just so it can be done sooner. I'm really not scared, because the doctors I've met and spoken with are brilliant. The nurse coordinating this (Donna Dorr) is so wonderful, supportive and understanding. I heard that all the hospital nurses are fabulous, too. Anyone who wants to "google" the two doctors in charge will be quite impressed. Check out Robert Brodsky and Douglas Kerr at Johns Hopkins. They seem so young, yet have more research, medical articles and credits than most people could accumulate in a lifetime. I am so lucky that they agreed to treat me.

Yesterday I spoke to Kathy, a patient who did this protocol three years ago. She was even more reassuring. She was one year older than me at the time and in a similar condition and she said the treatment changed her life. She is still in remission after three years! Kathy said that she and the doctors documented dramatic improvements, starting just three months after the treatment was done. By nine months after , things were even better. Now she says that it's hard for people to tell that she ever had the disease from observing her. Since her treatment , nothing new has been active on her MRIs.

Dr. Brodsky and Dr. Kerr are so humble (and of course realistic) that they don't make promises about my potential results. Dr. Kerr said that when they initially tried this treatment, they were just aiming for longterm remissions, but they were surprized to find that patients also actually improved. With results like that and no other options ( with success stories anywhere close to their's), it was easy to choose this route.

Thanks to all of you who have actually called me "brave". If you knew Dr. Brodsky and Dr.Kerr, you would understand why I have complete faith in them and this protocol. I know that I am risking my life, but my medical team is the best in the world.

If I don't do this, I am guaranteed that my condition will continue to deteriorate. If I risk it all, who knows ("knock on wood"), maybe I'll finally be a success story. Two or three years from now, I'd love to be like Kathy, reassuring another prospective patient that she is making the right choice.

Countdown to day one

Tomorrow I leave for Baltimore, to begin my chemotherapy treatment. Below is a description of the treatment:

What is Revimmune?
Revimmune uses an ultra-high intensity, short-course of an intravenous formulation of an approved drug (cyclophosphamide), in a new patent-pending method to "reboot" a patient's immune system, thereby eliminating the autoimmunity, whereas current therapies including oral cyclophosphamide are used chronically to try to suppress the inflammation of autoimmunity. Based on long-term follow-up showing complete remissions, there is substantial evidence that Revimmune has the potential to cure cases of severe refractory autoimmune diseases such as aplastic anemia and myasthenia gravis. Accentia's lead indication for Revimmune is multiple sclerosis (MS).

Developed by Dr. Richard Jones, Dr. Robert Brodsky, and colleagues at the Johns Hopkins University School of Medicine, Revimmune works by temporarily eliminating peripheral immune cells, including the immune cells causing the autoimmunity, while selectively sparing the stem cells in the bone marrow. Investigators at Hopkins discovered that stem cells uniquely have high levels of a particular protective enzyme that can be measured in advance of therapy, which makes them impervious to Revimmune, and allows the surviving stem cells to give rise to the new immune system over 2 to 3 weeks. The newly reconstituted peripheral immune system typically lacks the misdirected immunity to self-antigens, which is characteristic of autoimmune diseases.
Studies at Johns Hopkins University School of Medicine by Dr. Jones, Dr. Brodsky, and colleagues have demonstrated the potential benefits of Revimmune in a variety of autoimmune diseases.

Revimmune treatment of 20 Multiple Sclerosis patients has resulted in the following successful outcomes in 2 published studies from C. Krishnan, D. Kerr et al.(2) and D. Gladstone et al.(3):
All patients have had a reduction or elimination of new and enhancing lesions on the MRI
No patient has had a clinical exacerbation following treatment and most patients have had a reduction in EDSS and an improvement in the MSFC following treatment
During follow-up, no patients increased their baseline EDSS scores by more than 1.0
No patient had a new lesion on brain magnetic resonance imaging; no patient showed any enhancing lesions