Monday, August 6, 2007
Friday, August 3, 2007
Wednesday, July 18, 2007
I got a delivery of hats and a gorgeous wig from the American Cancer Society's TLC Catalog. The wig is better looking than my original hair was and it doesn't frizz in the summer heat.
Sunday, June 24, 2007
Friday, June 15, 2007
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.
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.
Tuesday, June 12, 2007
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.
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.
Saturday, June 9, 2007
Thursday, June 7, 2007
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
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.
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
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!
Tuesday, June 5, 2007
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.
Sunday, June 3, 2007
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.
Saturday, 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.
Tuesday, May 29, 2007
Sunday, May 27, 2007
Friday, May 25, 2007
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.
Thursday, May 24, 2007
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.
Tuesday, May 22, 2007
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.
Sunday, May 20, 2007
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.
Saturday, May 19, 2007
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