Tuesday, June 5 2007

Joanne and I bought hats today at the shop on the first floor of the cancer center. It was so great to get out of my hospital room (which feels like a prison cell) even just to a store on another floor of this hospital building.

Due to the fact that I am still a patient with Fever of Unknown Origin (FUO) the Infectious Disease Specialist came by to evaluate me. They looked at the central line site and said that it looked good and asked me a lot of questions trying to pinpoint when the first fever presented itself. They reviewed all of my labs and determined that it was nothing in the cultures that would cause a fever. They then decided that it could be caused by the injections of the Filgrastim which is given to stimulate the production of a new immune system. Dr. Brodsky and one of the IPOP nurses suggested that that was also a possibility – but no one can officially confirm it.

Speaking of Dr. Brodsky – I was so thrilled to see him today – he had been away in Chicago at a conference when I got admitted so I wasn’t able to see his smiling face to reassure me about my Fever of Unknown Origin. Although when he arrived in my room – I was in tears (due to the emotional rollercoaster of this intense treatment protocol). So I didn’t greet him with my typical smiling “HI!”, but I left a message with his secretary after his visit to let him know that I was so happy that he took time out of his busy schedule to come and reassure me and tell me that everything was going to be ok. In fact, he said something so wonderful. When he asked why I was upset about my 104 fever, he reminded me that a high fever was a guarantee upfront and that I was not only going to survive (knock on wood) but I was going to do great.

Since I am scheduled to have three more transfusions tonite – I asked Joanne if she would mind coming back to the hospital to sit with me during part of the time. Being as wonderful as she is – she didn’t hesitate to say yes and to hop on the next shuttle from the hotel and to get right to the hospital. It’s very comforting to have her by my side during this leg of the protocol.

By the way, I did 6 laps with my nurse in the morning and 6 laps with Joanne at 11:00pm!

June 4, 2007 - Monday

Today’s events were quite dramatic. I had the highest fever of my entire life – it was 104! It started to spike while I was getting an echo cardiogram and by the time the ½ hour test was done, I felt as if I was on fire so I called the nurse in and asked for Tylenol but it was already too late. After that, the nurse filled a huge bucket with ice and water and we completely soaked down my body from head to toe. We even had it dripping off my head – like with my hair. After ½ an hour we had to get a new set of towels, because my hair was coming out onto the wet towels (as it was supposed to) and we kept my entire body soaked from head to toe with ice cold water for about 45 min.

When my temp was rechecked – it went down to around 102.1 – what a great feeling to have that under control.

After that, I felt much better (compared to earlier in the day) – Joanne brought delicious crab cakes for dinner and apple pie with a side of ice cream for dessert. And before the temperature spike, Joanne and I walked 6 laps of the 4B unit (I am calling it my prison at this time) and 6 laps after dinner when we realized that my temp was down to 100.8.

I’m still taking this day by day and I hope that Dr. Brodsky will be back from Chicago and will be able to see me tomorrow (because just seeing him will make me feel better).

I had an absolutely horrible encounter with today's attending physician and his team of lower level doctors (resident, intern, fellow). He was so nasty and inappropriate with his bedside manner and he set an awful example for the doctors he was supposed to be teaching. It seemed that he had no idea what it feels like to be on the other side of the situation being a worried patient in a hospital bed. When I innocently said "what will it take for me to get discharged back to the IPOP?" meaning I felt like I was in prison, stuck in a tiny hospital room with no one telling me what was going on and at night when pressing the nurse call button often waiting an hour for just a glass of water. His answer was "you can leave right now but you could die out there. We don't know what your fevers are from." There would have been much better ways to say the same thing, without being so dramatic and possibly using more reassuring phrasing.

If Dr. Brodsky was in the room, I know that he would have said something completely different, because he is the HiCy expert who has seen it all. He would never try to scare me, he would make me feel safe. I signed on to do this HiCy protocol with complete confidence and faith, because I knew that Dr. Brodsky had incredible knowledge and experience from treating over 250 people this way. So, I desperately wanted to see his smiling face, then I'd feel better. The attending Physician, who was so mean, acted like he was personally insulted that I had made a call on my cell phone to Dr. Brodsky's assistant to ask if he could stop by to see me. What this man did not even consider when messing with me psychologically was that Dr. Brodsky had made it clear at my preadmission appointment that he would welcome any and all questions/concerns I had during my treatment at Johns Hopkins.

June 3 2007

Back in the hospital with no idea when they'll let me out again. I hate not knowing what's going on. I'm just waiting for the Hematology team to do rounds so I can find out. The Plaza Hotel food was great and the place was so comfortable that I want to get back there and do the daily IPOP again.

My hair is starting to fall out, just on schedule with Dr. Brodsky's prediction. He is SO SMART and obviously knows his protocol. My three transitional haircuts (by Marilyn) were just what I needed to get ready for the transformation to hats and wigs. Jessie, Marilyn and I picked out about 10 new looks for the summer.

Ouch my head still hurts, but I don't know if the broad spectrum antibiotics are helping the situation. The nurse just came in. I'm allowed to have up to a temperature of 100.3 - I have 101.9!!! Not a good sign. Where's my Tylenol.

June 2, 2007

Last night, I had a reaction to yesterday's Filgrastin injection and Greg had to call the on-call HiCy specialist. I had a rash, a slight fever, headache and dizziness. Also (as they had warned me) the bones in my legs were painful from the "growth factor." CVS gel packs (frozen) usually used for back pain, alleviated most of the leg pain. Today at IPOP, I got some really upsetting news. Since I have a fever of unknown origin, they are readmitting me to the hospital. I was really loving the hotel food and I won't even begin to compare the disgusting grub that passes as food at the hospital. I will be given high doses of broad spectrum antibiotics that can't be taken by mouth. After my fever subsides for 24 hours I can return to the hotel.

June 1, 2007

Karinna (my wonderful IPOP nurse) gave me my first Filgrastin injection today. The chemo did its job (knock on wood) of annilating the crazy white blood cells away and getting my counts down to the zero range that Dr. Brodsky wanted. This new daily injection is supposed to stimulate my bone marrow to create an immune system similar to a baby's (unaware that it used to think it was normal to attack my myelin sheath). One of the many side effects from this phase of the protocol is intense pain in the large bones of the body where a large part of bone marrow production occurs. Again, I'll take it day by day and won't be planning on skipping any doses of my pain meds.

May 31, 2007

Dr. Brodsky came by to see me at the IPOP center today. I was so happy to see him! He wanted to let me know that we were on schedule for the drug (to be administered Friday) to reboot my immune system. He makes me feel so good about all I'm going through, because he is truely compassionate and incredibly brilliant. I can't imagine how many lucky people he's helped, whose lives are now changed forever (Marilyn took his picture with me to continue her documentation of this experience). Also, at the IPOP, more blood was drawn and more infusions were dripped into my central line. Plus, two new prescriptions were added today to continue the broad spectrum coverage needed without an immune system. I have been prescribed nine drugs so far. Since I am so confident in Dr. Brodsky, I didn't even read the small print for the drug (just when and how much to take). My central line still feels uncomfortable, but the nurse said it looks OK. I think it looks gross to see the tube through the window in the clear plastic adhesive.

May 30, 2007

Day three at the IPOP center was similar to the other two. First, my blood was taken (2 vials) and run for stat tests. This was to check how the counts are going and to see what needs to be infused into me through my central line each day. A new med prescribed for me was picked up by a hotel employee at the 24 hour pharmacy, so I could start right away. The Tremont has great service. Now, the tiredness is coming over me again. During lunch (in the hotel suite) it was so nice chatting with Marilyn and Bob. The conversations help take my mind off the intensity of it all. The nurse changed my central line dressing (bandage) and it is the kind that is supposed to last a week. It is not very comfortable, so tightly gripping the surgical site. It is so sore.