Life in Chicago

Well, where did we leave off? Oh, yes, I was packing and waiting!

Monday morning I sent an email to Stacie, my transplant coordinator, at 6:15, letting her know I still had not received any information regarding the bone marrow biopsy results and their potential effect on the transplant schedule. She replied around 9 am to say she was putting pressure on the staff in Dr. Mehta's office to find out results, but that she was not overly surprised we would be cutting it close due to the quick turnaround time plus the holiday weekend. She encouraged me to continue packing and operating according to plan, which was to leave my home around 1 pm.

Around 10:45, Stacie called me to say that preliminary biopsy results had been read by the pathologist (who did not seem to understand the urgency of this situation). Unfortunately, the biopsy results were, overall, even more unreadable than ever before. Very little of my bone marrow status could be detected, and yet, Dr. Mehta said to proceed with our plans. About an hour later, Stacie called me in a flurry - apparently the pathologist added one short phrase to the biopsy results summary which caused Stacie to worry that this was something serious enough to throw off the plans. Fortunately, Dr. Mehta had a chance to review the new addition to the results, and he said to continue with our plans, but that he would likely order another bone marrow biopsy procedure for Tuesday following my admission to the hospital.

My pastor, Jarrett, came to my house late Monday morning to pray over me before this new chapter of this journey began. I greatly appreciated that! My parents came around 1 pm, we loaded the car (everything fit!), and we were off to the big city.

After encountering the rush hour delay, we arrived at the Hyatt Centric around 5 pm. We unpacked, then walked from the hotel to the Prentice building where I would be admitted. We found this walk to be very easy to navigate, very secure and safe, and shorter than anticipated. Next, we had supper at Beatrix, a very cool restaurant and market located within the hospital complex - thanks O'Brien Family for the assistance!

The alarm woke us at 6 am on Tuesday morning. After quickly getting ourselves ready, we each chose breakfast selections at the Beatrix market, which opened at 7 am. I walked over to Prentice to check-in, while my parents went back to the hotel room to get some of my belongings. Around 8 am I was shown to my room, and my parents arrived shortly thereafter. I was amazed by the view from my room:

Lake Michigan, with the Chicago Park District to lower left, and Northwestern School of Medicine directly ahead.

After unpacking and settling in, my parents and I kind of stared at each other for a couple of hours. Around 10, it was time for my PICC line to be installed, so my parents left, and Joanna, the technician, easily and efficiently did her job. Following this, a couple of radiolgists came to perform an on-the-spot x-ray to check the accuracy of the position of the PICC line. I ordered lunch and was just beginning to eat when the two members of the oncology team, Colleen and Hely (prounced HAY-LEE), came in to review my medical and disease history, current health, medications, and what to expect during my stay. Colleen said that because all testing has shown I am quite healthy other than the bone marrow issue, she predicted I would not have much difficulty handling the scheduled chemo. This was encouraging, although time will tell!

Dr. Mehta did indeed order a bone marrow biopsy, and at 2:00 pm, Dr. Natalie Heater came to my room to perform this. We discussed my previous biopsies and the increasing difficulty with them. She also clarified that the purpose of the biopsy is not just to find out the status of the disease, but to also make sure certain aspects of the bone marrow are in the right places ahead of the transplant. As Dr. Heater began the procedure, she immediately know she was not getting what she needed and tried to recalibrate but was unsuccessful. She also commented that she could see why previous such procedures hadn't been easy, and she thinks it's because my bones are very healthy and strong.

As we got further into the procedure, I began feeling more pain, but knew that we could not halt the procedure. Dr. Heater called in my nurse, who administered pain meds through my new PICC line, which made me feel a head rush up the back of my neck and overall tingliness. Dr. Heater tried a bit more, but announced she was not satisfied and would go find a colleague for a second opinion.

Dr. Heater returned with another doctor (her name was very unique and I cannot remember it), and this doctor essentially performed a second biopsy for the day. It was obvious that both women were using most of their physical strength to push the needle further into my bone, and they were meeting resistence. Finally, they announced that they had procured a very good liquid sample, and at the last moment, a large enough piece of bone. They were both thrilled with the success of the procedure and the long-awaited data it would provide. Dr. Heater told me I deserved a prize for what I endured!

The procedure took well over an hour, most of which I was laying on my right side with my right leg straight and my left leg bent with the knee pulled high. My left arm was also sore from my new PICC line. I would not have been able to lie so still nor as comfortably without pillows supporting my knee and arm. By the end of the procedure, I don't think the pain meds mattered much - what was happening to my bone was painful and probably couldn't have been numbed under the circumstances. It was the longest and most painful biopsy to date.

It was my understanding that the pathologist would be asked to expedite the reading and reporting of the biopsy results. This could take up to two business days. I was scheduled to begin chemo on my first full day in the hospital (Wednesday), but that is on hold pending those results.

Afterward my nurse brought in a unit of blood. Apparently my hemoglobin count needs to be above 8 for the transplant. (Typically, a transfusion is needed if the number drops to 7 or lower.) Since my number was between 7 and 8, I needed a transfusion, so we got that started.

My parents came back shortly afterward to help me repack my belongings. Unfortunately, my room with the marvelous view on Floor 15 was temporary - the 16th floor is exclusively for bone marrow transplant patients, and a room wasn't available on that floor earlier in that day. (I wasn't informed of the need for this move until midday.) With the help of a cart and my two nurses, we easily moved up one floor, where I was given the "penthouse" room - a corner room with views of Lake Michigan and a panoramic view of this part of the city.

Lake Michigan can be seen over the top of Northwestern School of Medicine, which is to the left of these windows. Much of Northwestern Hospital can be seen below and to the right of the windows. My room is on the corner of Fairbanks Court and Superior Street.

My parents stayed a bit longer, and then they left. I ordered supper, got myself ready for bed, and was fast asleep a little after ten. I slept very well (and needed it) all night despite the interruptions for vital checks and blood draws.

One early morning interruption this morning (Wednesday) was when my nurse came in to hook up another unit of blood. I slept until 8, and then around 9, the nurse switched out the empty bag for an infusion of Micafungin, a heavy duty anti-fungal medicine. This infusion took about an hour to administer.

My parents arrived around 11 and stayed for a few hours. The oncology team came by around 12:30 to chat - this was kind of a formality since I'm once again in a holding pattern and have presented no new symptoms. Everyone is just waiting for the biopsy results, which I was told could possibly come in late today.

Ed had a phone conference with his donor coordinator this morning. He is on track to begin injections (he will give to himself) to stimulate stem cell production tomorrow. He will do this for five days and drive to Chicago late Sunday. The donation process will begin Monday and could take up to two to three days. Ed will not be admitted to the hospital for this - he will remain outpatient and stay overnight in a nearby hotel.

If my schedule gets "off" because of the biopsy result delays, then Ed's donated cells will be frozen until I am ready for them. Apparently this was the standard practice until recently, when the "fresh" donation became the norm. Either way, fresh or frozen, the process has equal chances of success.

As I write this, my parents are just about to begin the Chicago Architecture Boat Tour. I won't say I forced them to do this, but since I offered to buy their tickets so my dad would even consider going, they wouldn't have done this otherwise. I've heard great things about this tour, and I know they will have a great time. Dad is planning to go home tomorrow, as he has had about enough of the traffic, closeness, and expense of existing in Chicago. (He invited my CNA to come visit the farm!) He can't wait to get home to the wide open spaces and the luxury of the daily afternoon nap in his recliner.

If you have actually read this entire update, I commend you! A lot has happened in the last three days, and I know many of you anxiously await each update. Thank you for your interest, prayers, support, and love!

I cannot say how often I will post updates, but I will not leave my readers hanging for too long!