Winn Dixie Hope Lodge in Gainesville, FL

I just had a checkup down at the BMTC (Bone Marrow Transplant Clinic) at Shands in Gainesville, FL on March 30th. All my bloodwork turned out pretty good! Praise the Lord! I don't have to go back now until June 8th for test and torture day. This will be my two year anniversary checkup and I'll have to have a PET/CAT scan, bone marrow test, blood work and my second round of baby shots. If everything goes well, they won't require me to come back for a WHOLE year! Yea!

While I was living in Gainesville in the summer of 2007 going through the transplant procedure, I lived at the Winn Dixie Hope Lodge. This is kind of like a Ronald McDonald House for us cancer patients. It doesn't cost the patient anything, but there is usually a waiting list to get in. The American Cancer Society has Hope Lodges across the United States and there is one down in Tampa, Fl also.

The Hope Lodge was a real salvation for me because of one of the rules I had to agree to. To have the transplant I had to live in Gainesville for several months with a 24 hour caregiver until I was released to go home. This would have cost me a fortune in hotel or apartment bills. I was in the hospital for five weeks for the pre-chemo and the transplant. Then had to wait until I was well enough to live out of the hospital for another 100 days while traveling back and forth to the clinic two or three times a week for bloodwork and checkup.

I was so fortunate I was able to get a suite at the Lodge right as I was released and Brother David and I moved in. I think we had the best room location in the whole building! We were the closest room to the huge kitchen area, the bedroom backed up to the laundry room and there was an extra bathroom close down the hall from us. The suite was quiet and restful. The staff was wonderful! They also had volunteers working the front desk too. We would check in and out if we were leaving the building and we had a shuttle that made scheduled rounds all day. We didn't even have to take the car out of the parking lot.

As for eating, we were responsible for our own food. The lodge had six huge kitchen areas for cooking and a large dining room for eating and socializing. We got to know a few of the other patients gradually (especially after my mother had stayed her week). Since I was a transplant patient I would be expected to stay several months. The Lodge had several rooms reserved just for us. The other patients were being treated for all kinds of cancer and receiving chemo and a lot of them were undergoing radiation treatments. They would come and go staying for a few days or a week or two and go home and come back later for another round. Most patients had caregivers with them. Some had their spouses or siblings and some came by themselves.

Because I had undergone radiation myself back in 2003 I knew what kind of pain these patients were going through. You could spot a radiation patient a mile off. They usually had what looked like a sunburn and they would carry around a spit cup. It is too painful too swallow. Some would get pretty depressed but I did my best to cheer them up and help them count the days down till they were finished with treatment. I also gave them advise to down as many frozen milkshakes and ice cream as they could. This was definitely not the time to diet! Splurge! There was usually containers of ice cream in the community freezer and you could help yourself. Luckily at this time I didn't have to worry about gaining weight. I was losing a few pounds at a time, so I introduced David to Publix brand "Black Jack Cherry"! This is still my favorite and we ate a ton of it.

One of the side effects of chemo, radiation and the transplant was "chemo brain"! All us patients suffered from it! Somehow the medicines affected your short term memory! We were warned ahead of time! But there is nothing like it! Most all the patients were friendly with each other and encouraged each other, but when it came to remembering names, forget it! We could usually remember each other by faces but that was about it. I called this one friendly man the wrong name for two weeks before somebody had enough nerve to tell me his correct name! I still don't know it. He always answered me and never corrected me. (Who knows maybe he didn't remember it either). I know I got called a lot of different names, Melanie was a hard name to remember! I didn't mind. I'd answer to anything. Some people were so popular we could always remember their names. One young man in particular was a chef by trade and once a week he would fix a big dinner for everyone at the lodge. His fish fry was his best dinner! His name was Nathan. His sister was with him, but I can't remember her name! There was a good handful there at that time for several weeks and we all got along famously. For such a serious situation we were all in, we laughed quite a bit. We would have potlucks and everyone would join in. The local churches took turns once a week bringing us in a dinner. After a hard day of treatments and sitting at the clinic hooked up to an IV nobody felt like cooking. These church dinners were much appreciated.

David got a big laugh on me one time when I stuck my foot in my mouth. A church had brought in dinner and I waited until the line was short so I wouldn't have to stand very long. I got in line right behind a nice looking pregnant lady. I figured she was a caregiver and was about seven or eight months along. I wanted to be friendly so I gave her my biggest friendly smile and asked when the baby was due. She turned and was not happy with me at all! "I'm NOT pregnant!" I tried to undo the damage by apologizing and said she looked so young that she might be. There was no fixing this situation. From then on every time David and I had to walk by the dining area where she was, David said she gave me a bad look. If looks could kill, I wouldn't be here. I just blame it on "chemo brain" and not thinking things through before I spoke. We patients were likely to say anything! Most of us were pretty doped up on medicines and pain killers! What a party! It was only about a week later David and I were at the hospital bus stop when I saw another pregnant one. I was just about to congratulate her and David warned me about the possibilities! He was always watching out for me!

I still hadn't learned to keep my mouth shut and continued to embarrass myself. One of my best friends at the clinic, Terri, went through orientation with me early on. She wasn't staying at the lodge but I saw her off and on at the clinic when we were there for blood work and IV's. She was so sweet. She looked young but I think she was just a few years older than I am. Every once in a while her pregnant daughter would come with her and sometimes an older white haired man. The man reminded me of my own father. He was of Scottish decent, cotton white hair and a reddish, thin skin on his face. He was always quiet and never had much to say, but one time I was in the waiting room with them waiting our turn to be stuck. I asked Terri right in front of the man if this was her father? She just smiled and said no this was her husband. Foot went right into my mouth! How do I get out of this one? David was doing everything he could not to laugh at me and keep a straight face. I said as graciously as I could that he didn't really look that old, it's just that his coloring reminded me of my own father! I don't think this helped much. He still didn't have much to say. But when I did hear him talk he spoke softly and with a Scottish accent. Several days later I apologized to Terri and she said not to worry about it that he didn't mind and he was often mistaken for her father!

Since I couldn't remember names very well, David and I would nickname them between ourselves so we knew who we were talking about. There was Cowboy, the Wheelchair Man, and the guitar man, and then later there was the guitar woman. We thought she would be a perfect fixup for our brother Bud. She was kind of like a free spirit type. Perfect for him. Unfortunately he never got to meet her!

After a while I noticed that all the patients and caregivers I had gotten to know were slowly checking out and going home and some got worse and had to go back in the hospital. I was still there and had started getting sicker. I was spending a lot more time in our suite sleeping and being attached to an IV pole that went everywhere with me. I had to go back in the hospital for a week and then back to the Hope Lodge for a week and then back to the hospital for one more week. After this they said I could go back to Orange Park. Hooray! I was real weak, but I had my wheelchair and a walker, and my daughter Allison and husband were there to help take care of me.

It took a while but the cards and letters from friends and family were taped all over the wall for me to look at and cheer me up.

I have been so blessed by friends, family, and the Hope Lodge family. We all tried to pull together and keep each other going.

If you want to see what the Winn Dixie Hope Lodge was like you can take a tour on line. Google "Winn Dixie Hope Lodge Gainesville" and it will take you there.