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.