June 17, 2007

I'm feeling a little stronger today. After getting up at 8 am, I felt good enough to do more organizing of my kitchen and family room. It is so nice to feel that my home is back under control again. The boys went up to the cottage in Maine to get it opened for the season. Jessica stayed home to keep me company, since I didn't feel ready for a weekend away (my first weekend after finishing my protocol). In the afternoon (after a long break reading a magazine), I felt good enough to do yoga stretches and some of the exercises that the hospital Physical Therapist taught me. I used 5 lb weights to work on my biceps and triceps, plus I did balance exercises that focused on strengthening the calf and thigh muscles. More good news: my stomach and intestines are back to normal. I enjoyed pizza for lunch with Jess. I did have to make a call to the IPOP today because I developed a rash last night after my first dose of Bactrim. The doctor (available whose name I don't remember) said it sounded like a reaction to the drug and not to take today's dose, but to use Benedryl if it got too itchy. He also said to check in with Dr. Brodsky to see what he'd like me to switch to. So, I left him a message. It is about 90 degrees outside, so I'm blasting the air conditioning and taking it easy for the rest of the day.

Thursday, June 14, 2007

Now, I'm back home hanging out with my dog, Teddy. I slept late, then we went downstairs to survey the "tornado" that hit while I was gone. After tossing out some of the junk mail and organizing some of the mess, I realized how exhausted I really am and that I need to take my time recouperating and resting.



The thing that really seems to be slowing down my recovery is the continuation of the major stomach and intestinal cramps. Unfortunately, the severity of the intestinal distress is due to the combination of the HiCy, IV antibiotics given during the rehospitalization for 6 days of fever of unknown origin and the MISTAKE where the MD intern gave me a magnesium citrate drink before starting the Zocyn and Vancomycin to cover anything that might be causing the fever. As I mentioned in earlier posts, my fever was not tied to anything except the classic neutropenic state and as the Infectious Disease doctors speculated, possibly induced by the necessary growth factor injection of neupogen (started on the day I first developed a fever). The lesson that I learned the "hard way" is that just because a doctor is in a white lab coat (with his name followed by MD), it doesn't mean that he has much knowledge or experience with this specialized HiCy protocol.



A nurse with lots of HiCy experience (that worked day 3-5 of my 6 day hospital stay) told me that the magnesium citrate should never have been given to me. I unfortunately was re-admitted on a Saturday, which is as bad as being admitted at night, because the staffing is severely limited and in my case, the nurses and MDs seemed to know less about the HiCy protocol than me. Also when I would buzz the night nurse to ask for even just a glass of water, it would often take them up to an hour to show up.



This should change over time as Dr. Brodsky takes over more beds on the fourth floor and uses more of his HiCy trained nurses for weekday, weekend and nightly coverage. My advice to anyone who goes through this protocol is to always have a close friend or family member with you (in and out of the hospital). They can even get you a drink. When you go for the IPOP visits, the nurses are well qualified, so in general, you can trust their judgement and decisions. But, in the hospital you must not be intimidated by MDs or any staff. Also, it's ok to ask how much experience they have with the HiCy protocol. It can't hurt to have someone you trust "google" the drug or treatment (you will get during a rehospitalization to check whether the doctor actually made a good choice). "Hindsight is 20/20". Had I known the magnesium citrate would dramatically increase the intestinal damage (already slated to begin from the HiCy and IV antibiotics), I would have refused to drink it. Another FYI, that I learned (from the rehospitalization experience) is that the lowest level MD, with the least amount of experience/closest to graduation from medical school is the MD that the higher level doctors let make the decisions (maybe to help them to learn from their mistakes) including ordering meds and doing discharge orders. An example of how alert you (and your caregiver) must be is checking discharge orders. When I was discharged with severe intestinal cramps (and diarrhea), my discharge orders included prescriptions for two laxatives. That seemed incredibly negligent to me (and made me question, the safety and intelligence of anything else on the discharge orders) and it made me wonder why the higher level attending physicians didn't catch that or the magnesium citrate.



The bottom line is that the HiCy protocol has been shown to be an amazing, life improving treatment, like no other available. It's just that a patient has to be completely knowledgable about everything that is supposed to happen for whatever scenario may occur.

Wednesday - June 13, 2007

Today was an exciting day. At approximately 8:15am, I went to the IPOP to have blood drawn and was given IV fluids (due to an increased heart rate). Then Dr. Brodsky came by to see me to check how I was doing, watch me walk and check my balance. He gave me a big hug, too. I like the way he seemed so proud of me for finishing.



Next Marilyn and I went to the lab where my central line was removed. The removal was quite different from the placement, because I was awake the whole time (with 2 numbing injections). The PA's who removed my line were so comforting and wonderful, so it only hurt while the 2 needles for numbing were used. During the process, I agreed to have them cut enough to remove all of the line parts - to leave nothing behind. I didn't want the piece that held the catheter in place left in my body.



I was told that I could shower and change the bandage the next day. After a quick lunch, Marilyn and I went to the Outpatient Center to see Dr. Kerr. Dr. Edward Hammond stopped by (since he has been helping me from day one). Marilyn took our picture together and he gave me a list of what blood tests to have done each month until my first follow up appointment 3 months from nowand a proud hug. Also, Dr. Kerr came by to answer questions about my medications and the HiCy recovery process. He said if I had any questions or concerns after returning home that I should feel free to email him or call him. It feels great knowing that he will continue to follow me along and be there for me for whatever I need. He gave me a big hug and was happy to let Marilyn take our picture together. I can't imagine having any better doctors for this than Drs. Kerr and Brodsky. They are the absolute best in every way.



I'm so happy about going home to see my family and my dog, Teddy. Jessica is changing her plans after school tomorrow, just to be with me! I know my being away has been hard on everyone, especially Jess. During one of her weekend visits to Baltimore when she saw how much hair I had lost, she cried because I think she felt so sorry for me (since the hair loss made me look so ill). For now, I plan to always wear a hat or a wig so I look healthier, until the hair grows back.

June 12, 2007

I am scheduled to have my central line removed on Wednesday, June 13th. I've been in this protocol for three weeks but it feels more like 3 years.

Wednesday at 8 am I'm supposed to report to the IPOP for pre-op tests. Then at 10 am, I am scheduled for the central line to be removed. At 12 noon, I'm scheduled to see Dr. Kerr and hopefully Dr. Hammond too. Well need to go over future plans for follow-up as well as medication adjustments. Marilyn and I are scheduled to fly back together Wednesday evening. When I return home, Doctor"s orders are for at least one month for recuperation (lots of rest) in order to get stronger.

I was given permission to have my first outing away from the hotel and hospital tonight. So Marilyn and I went to Phillips on the inner harbor outdoors. It felt surreal, almost like a dream, to be acting like a "normal" person in the real world.

I feel like I've been away forever.

June 11, 2007

My white blood cell count, platelets, h/h are in the normal range! Dr. Brodsky came by the IPOP to see me to say that I was all set to plan for a discharge from the protocol. Through a waterfall of tears, I thanked him for everything he's done for me. I could barely get the words out (I was so emotional) but I wanted him to know how grateful I was to have had him put me through the protocol. Through the tears, I tried to say that I couldn't possibly thank him enough for giving me new hope for a different future than I was heading towards before this treatment.

Right after he left the IPOP, Kathy (the woman who went through the protocall three years ago) called to check in. Again, she was so inspiring and reassuring. It was so encouraging to hear how much our cases/symptoms were similar before the protocol and how wonderfully she's doing now. Kathy said to check in with her after I get into the recuperating phase at home.

June 9, 2007

I spent the morning at the hotel with Greg and Jess enjoying quiet time with my family. Then I went back to the IPOP Center and felt like I as in such good hands again. Finally, it was back to people who understand Dr. Brodsky's protocol. I'm starting to feel stronger and more coordinated as my new immune system starts to develop. Today, my white blood cell count was 1850 (normal range is 4500 - 11,000) up from 120 on Thursday evening. Of course, that's up from around zero for a week (during the planned immune system shutdown). FYI (during a casual hallway meeting, Dr. Brodsky said last Wednesday that my white blood cell count would ("begin to reboot" and) go above zero after seven injections, then shoot up quickly after that. After exactly seven injections, (as he predicted) the white blood cell count began to revive. Also, I'd call my wbc count multiplying by over 15 times in 2 days "shooting up quickly! I continue to be impressed by his incredible knowledge and would recommend him and his protocol to anyone else who fits the criteria. Also, I was happy to hear the HiCy Revimmune Protocol seems to be expanding at Johns Hopkins. I hope that this is a sign that the Revimmune product will be made available to MS patients across the country as soon as possible. There is so much potential to restore the hope and lives of so many people who have suffered from MS as I have.

June 8, 2007

I was finally set free after 6 nights of what seemed like a prison sentence. At 6 am, my final temperature reading was normal, so after 36 hours of normal readings the protocol allowed my release. I couldn't go back to sleep since I was so excited about leaving the hospital, so I started getting ready to go. It took until after 1 pm for the discharge papers and prescriptions to be written, even though the intern responsible for the paperwork was on the floor by 8 am. Obviously, I wasn't a priority. Luckily, Joanne came by at 9 am to keep me company while endlessly waiting. A few tough lessons learned during my hospitalization were that the hospital (4B) is staffed completely differently on nights and weekends (when I was admitted). Evenings seem like a dangerously inadequately staffed time where the experienced doctors have gone home and the newer doctors are left in charge of many areas, some of which they have little experience in. I felt like the doctors working on the weekends (a well as the evenings) knew less about the HiCy protocol than I did. The nurses on the night shift and on weekends did not specialize in IPOP or HiCy protocols, so the care was completely different than on weekdays. An example of a mistake made by people not familiar with the protocol was giving me magnesium citrate shortly after admission last Saturday. It was a treatment used to prep for a colonoscopy to cleanout the intestines. I was not scheduled for a colonoscopy. Had the weekend staff been aware that the high doses of antibiotics would have a similar effect, they might not have given me the unnecessary treatment which caused a week of major stomach aches, intestinal cramps and diarrhea. The bottom line is be as aware as you can about what you are being hospitalized for and have a family member or friend visit regularly to keep an eye on things.

June 7, 2008 - Thursday

Finally started the day with 98.6f/37c temp - aiming for staying under 38c for 24+ hours (knock on wood) so that I can be discharged back to the Tremont Plaza.

While taking a long walk with the charge nurse at a very fast pace for me I saw Dr. Brodsky. I was so happy to see him and he, as usual, provided very encouraging feedback on my progress.

While having lunch with Joanne, I practically fell asleep in my turkey sandwich. I was wondering if it was the walk, the medication or if possibily a fever returning. But when they took vitals again, Nicole reassured me that my body was going through so much dramatic change as a result of the HiCy and that I was just exhausted. It was time to take a nap.

At 5pm, I was woken up from a very nice nap with the news of a room-change. I was told that a patient on the floor needed a "clean" room(room with double door protection) - which on this floor, the only room was mine - so I had to move 5 doors down to a different room. Sounds easy enough, except when you are exhausted and not feeling like packing for a move. The nurses were quite helpful in getting all my things together and moving my entire room (including my furniture) into the new room. Let me tell you about this new room - I wish I had a room that had two windows the way this one had! Even though this room is twice as big as the other room and the bathroom is big and it's bright with the two windows - it doesn't hold a CANDLE to the the super-comfortable bed and suite at the Tremont Plaza.

Wednesday - June 6, 2007

My new antifungal medication was added two days ago since I still have a fever of unknown origin - the doctors told me that this drug would cause bizarre side effects.

Never before in my life has a medication prescribed by a doctor resulted in hallucinations where I am in a horror movie with every villan from every slasher movie. The images are incredibly vivid and flash at high speeds. They are accompanied by lightning bolts on the underside of my eyelids. When I turn on the lights and open my eyes I see the room in different colors. The doctor said I would see little green men - so far I haven't seen them. They would be a lot cuter than what I have encountered.

At this point, the doctors are calling my fever of unknown origin a neutropenic fever which can result from having no immune system. Their decision is not conclusive because they keep looking for a reason for the fever. I was told that they may not find a reason and that the fevers may ultimately resolve themselves as my immune system kicks back in again.

For the past three days I have had the most wonderful nurse on the day shift - her name is Nicole. She has been involved with the HiCy Program and with the IPOP follow-up clinic for four years. So her words of wisdom and incredible knowledge of the subject are so comforting at this time.

On a lighter note, while Joanne and Nicole were in the room with me today, I got an interesting phone call on the hospital line. The man was looking for his friend Bernard Oxman and I told him that he had the wrong room. He kept insisting that he dialed the right number and that Bernard was in the room. I suggested that he call the hospital operator to get the correct number but he kept saying that he knew he had Bernard's room. I told him that I was sure that after 4 days of being in this very small hospital room -that Bernard was not here. The three of us had a really good laugh over it. A nice way to break up the intensity of the day.

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.