I'm not sure how much all of my medical bills have amounted to over the years, but I might soon be the next "Six Million Dollar Woman". Or I guess I should say the "Bionic Woman". I've been very fortunate and have always had medical insurance. We still had to pay a big part over the years but when it came time for my transplant God was looking out for me. I had went back to working at the Library in 2004 and had insurance from them and I was still on my husband's insurance too. So in 2007 I had two insurance policies. It worked out I could receive medical leave and my insurance from work would still be in tact. So I had two insurances to cover me for my transplant. I had taken medical leave the summer of 2006 for a few weeks when I couldn't see and then I needed to take another medical leave for the summer of 2007 for the transplant. A couple of weeks before the scheduled hospital stay, my Human Resource Manager called and told me I didn't quite qualify for this next scheduled leave! I didn't have enough "days worked" to qualify. I asked how many I needed and fortunately it was only like another ten days. I called my contact at the Bone Marrow Transplant Clinic at Shands and explained my situation. I said I know this is strange but could we delay the transplant for another week and a half and then I'd have medical leave and the all important second insurance! This was an unusual request but she said this could easily be worked out. I had to do two weeks of intensive chemo therapy before the transplant, so they would just delay the harvesting of the bone marrow from the donor.
I still don't know who my donor is except that it's a woman with type O blood. My two year anniversary is this May 29th. I hope to be able to contact her after this date. There are rules that prohibit donors and patients from contacting each other until some time has past. I'm very anxious to meet this generous person.
The Bionic Woman in me seems very real. I have had over the years numerous medical tests! First I had all kinds of tests just to find out that it was cancer. Statistically at 36 years of age I shouldn't be having this type of cancer. NonHodgkins Lymphoma was mostly for older people and usually males. I never rely on statistics! You can't count on them. No pun intended. The medical community had no idea why I was so sick. But I kept pushing and telling them something just wasn't right. I know my body and this is not the way it should be. I wouldn't let them quit looking and testing until they came up with an answer. Blood tests, x-rays, cat scans, upper GI's, lower GI's, and two colonoscopies and this was before they knocked you out for the procedure. For the first one I was admitted into the hospital and told to drink several liters of this awful tasting stuff in a certain amount of time. This was to clean out my colon. I did have the bed next to the bathroom thank goodness and didn't have to run as far. I was willing to cooperate but my stomach had shrunk from me not eating and it couldn't hold very much. I managed to get down half before my body rebelled. As soon as I started on the second half it would come right back up! There just wasn't enough room in my tummy for this other liter. Well, this didn't make Nurse Ratchette very happy with me. She insisted I keep it down! and quit being a baby. Like I could keep an overfilled balloon from popping! She was nuts. But I kept drinking and I kept throwing it right back up. I finally made it through this. Keep in mind this is waaaay back in 1992 and they do things differently now. When I was wheeled down to the procedure room, I was given a shot "to take the edge off." Oh yeah, like this was going to work. This shot hurt worse than what little good it did. Then they gave me the famous "twilight injection". I had had this before and knew this did not phase me one little bit. This is suppose to put you far enough out that you don't even remember the procedure! I told them this wasn't going to do the job. But what did I know. I was still wide awake laying on my side with the doctor at my backside sliding a tube up the you know where. This was a bit painful (this is why they now knock you out!) and I let him know it. He went up the entire colon and took little bits of the tumors for biopsies. Well, home I went to wait a few days for the results. The results were inconclusive! They needed to do this AGAIN and take a bigger sample for biopsy. (With my type of lymphoma sometimes the cancer cells can be far apart and not show up in a small sample.) Since the doctor and I were now on intimate terms I told him before the next one we needed to make some changes here. There had to be another way to cleanse my colon and he told me what to get at the drugstore that would do the trick without drinking Lake Okeechobee. I then told him I needed more drugs because this was painful. He must have felt sorry for me. They gave me extra drugs for my discomfort this time. It still didn't knock me out or even make me woozy. I was wide awake and lucid but I wasn't uncomfortable at all. I told the doctor he better take as big a sample as he could because we would not be doing this again. He was very nice and when he started with the camera tube going into the far beyond, he asked if I wanted to watch it on the screen. Now this part was cool! He explained as I watched this camera travel up my colon. I could see for myself how all the tumors were pressing in on my colon. It looked like a soft hose with golf balls on the outside pressing in. These tumors were growing and blocking off my small intestines and colon. This is why my food couldn't go through and I would get severe back aches. He cut off a bigger sample (I reminded him while he was "visiting" to get as much as he could.) This was the test that said for sure it was cancer.
I started seeing an oncologist in Orange Park, FL. I wasn't as thrilled with him as he was with himself but I thought he must know what he was doing. My first clue he wasn't the right doctor for me should have been when I called to make my first appointment, I was told he was on vacation and I would have to wait three weeks for an opening! Three weeks! Can you even imagine you have been told you have cancer and have to wait three whole weeks. I still couldn't eat and I was still having bad back pains and I was still changing diapers, making bottles, doing laundry, cooking meals, and running after a three year old. I finally got in to see him and he said the first thing we would do is a bone marrow test. Well, this took another week to schedule. This was my first bone marrow test and I didn't know what to expect. The nurse put an IV in my arm for the pain killer and then realized I'd be lying on my stomach. She pulls that IV out and switches arms. She had just put in the medicine when Dr. Full of Himself struts in with the biopsy needle. The medicine hadn't even taken effect when he jabbed that needle into my back hip bone. I couldn't help it. I screamed! Talk about pain! Then I still had to book my next appointment to come back for the results. At the next appointment as I went and signed in, the nurse said yes she remembered me. I was the screamer! It seems that all the nurses and receptionists had heard me scream bloody murder and LAUGHED! I was so humiliated. I saw the doctor and he said the marrow test was negative but he still wasn't satisfied with the diagnosis. He wanted an entire tumor to biopsy to pinpoint the exact lymphoma. I later learned from another oncologist that there were at that time about 72 different kinds.
I needed to have an exploratory abdomen surgery to see just how many tumors and what all was in there and take out a big one for biopsy. They were to open me up from my belly button straight down about eight inches. This operation went smoothly and the surgeon knew what he was doing. Before the operation I was extremely nervous and when I'm that nervous I talk a lot! I mean a mile a minute and about any and everything! I'm not thinking, I'm just talking rapidly! I say anything that comes into my mind as I think it! No filter! They have me all prepped and on the rolling table in the waiting area curtained off waiting my turn on the table. First the surgeon who I have already had an appointment with comes in to say "hello" and go over again what he's going to do. Then the anesthesiologist comes in to meet me and talk a little to reassure me. When he came in...... he started talking to me and I didn't hear a word. He had the most gorgeous blue eyes and was just the most handsome man I had seen. He was probably my age or a couple of years younger and was movie star handsome. Brad Pitt had nothing on this one! Well, like I said, I said exactly what I was thinking and out of my mouth it poured. I told him I was so glad I had such a good looking doctor taking care of me and I loved his blue eyes! He was very gracious and thanked me. I can't remember what else I said I was so nervous. The surgery went well. They opened me up, I was full of tumors, they took out about three of the largest ones and my appendix as well, and sewed me up. The next day while I was recuperating, the anesthesiologist came by for a visit. He was so nice and wanted to see how I was doing. He could only stay a few minutes and was gone. My day nurse came in after he left and asked if I was a friend of that doctor. I said no, just met him for the surgery. All the nurses had crushes on him and she said he never came up to see the patients afterwards. This was the first time she had seen him come to check on someone! I'm so glad he did! It made my day!
Also visiting me after surgery was my surgeon and my oncologist Dr. Full of Himself. Well I guess all the pain killers and nervousness was still with me because I told that doctor that I wouldn't be seeing him anymore! I would be going into Jacksonville at Baptist Cancer Center from then on. He just blew it off and told me I'd get tired of the drive and would come back to him. I never went back to him and if anyone ever asked about an oncologist I would tell them not to go to him and how awful I thought he was. He's still practicing but I've heard some other terrible stories about him from dissatisfied patients.
When I made an appointment at the Baptist Cancer Center I told the receptionist I needed a very compassionate doctor with a great bedside manner. She had just the one for me. I started seeing Dr. M and was very satisfied. He explained things to me and told me we had to start right away. As soon as the surgery had healed a little more, he would get me going pronto. I saw this oncologist for 16 years until I went to Gainesville Shands and then moved to Georgia. I'd still be seeing him if I were still in Florida.
Tuesday, May 18, 2010
Friday, April 30, 2010
P.S. On the Gainesville Hope Lodge
I forgot to mention on the last blog entry about the Lodge mascot. He's not really official and not really invited on the property. He just shows up.
One afternoon I was still walking pretty good and wanted to look around outside the building. They have an outdoor patio, a flower garden memory walk, and a pond with a fountain in it around in the back. As I saw the pond and walked toward it I noticed it was fenced off. Even though there was a nice wide sidewalk I thought this was a good idea because we didn't need anyone falling in. This pond was in between the two story building and a swampy forest area to the back. As I stepped up on the sidewalk to walk around to the back of the building, the corner of my eye caught something move on the other side of the pond. I couldn't believe it. An alligator was sunning himself on the edge of the water! Well this town was the home of UF of course, so what did I expect. I'm not good on measurements but he was about 4 1/2 to 5 feet long. I kept walking (quietly) and noticed all the turtles were starting to swim toward me. This is really strange. Usually turtles will stay sleeping or go under water to hide. Then I looked down in the water next to me and the alligator was swimming along side of me! I kid you not! The hair on the back of my neck stood up. Fence or no fence this was really creeping me out! Remember all the old Tarzan movies when we were kids? The alligators slipping silently into the water? This is what came to mind. I was quickly double checking out the sturdiness of this chain link fence and looked for escape routes. It just struck me as weird about seven or eight turtles and an alligator all looking at me like I was dinner. I then realized someone had been feeding them and they thought I'd throw them something to chow down on. Sorry to disappoint them but I made haste back to the safety of the building.
Later I asked at the front desk about the alligator and they said they didn't put him in the pond. In fact they had recently had a much LARGER one relocated to another spot. With the location of the Lodge backing up to some wetlands, the gators just find a nice pond and make it their home. The management has a (very faded) sign saying it was illegal to feed or molest the alligators but you could barely read it. I believe some of the residents were feeding the ducks, turtles and gator just for fun. I don't think anyone was molesting the alligator because he looked pretty healthy to me! And I had no intentions of getting any closer to this reptile. I grew up in the country and I have a major respect for them! I just give them plenty of space.
After the pond adventure I did like to go in the Memory Garden. This was a lovely courtyard off the screened-in side patio. It had lots of flowers and small trees. There was a winding sidewalk that had a gazebo at the far end. People had donated benches, small statues and plaques in memory of their late loved ones. This was a beautiful garden and I liked to visit it often. One plaque I liked, a patient had dedicated to her best friend. Her cat named Bob! Me being a cat lover found this made me smile everytime I saw it.
Thursday, April 15, 2010
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.
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.
Tuesday, March 23, 2010
Happy Birthday to Me!
Today is my birthday! I am 54 years old now. WOW. I use to think this was old. When I was in elementary school still in the single digits, I use to think about the turn of the century. I couldn't imagine being in my 40's and still be alive to see the year 2000! The changing of the century. I imagined myself as some old white haired, crippled up, retiree in a nursing home! Well, I still have my wits about me, can still drive, enjoy life and laughing at all the absurd things that happen in life.
I didn't wait until today to celebrate my birthday, I have been celebrating ALL month long. First I went back to Orange Park, FL to visit with my daughters Elizabeth and Allison who were on spring break from college. So good to see them. I miss them terribly. I didn't realize they would have to grow up and leave me some day! I wanted them to stay six and four years old forever. They were busy watching the original Power Rangers, Barney, and Disney movies! They loved playing dress up in my sewing scrap leftovers. I have lots of pics of them in all kinds of outfits. My girls have always been so special to me. With my having cancer while they were so young, they never knew anything different. They were always so considerate of me when I had to take naps and wasn't feeling so good. They knew doctor's appointments were a way of life and the word cancer didn't scare them. I was so glad they just accepted it as fact. I didn't want them to constantly worry. While they were in elementary my health was pretty good while in remission and I could participate in all the school activities. I was really blessed that I didn't have to work outside the home and could just be there for them. Now since my transplant they have realized the seriousness of this disease. I try to spend time with them when I can and share all the funny things that happen.
Back at Christmas of 2008 right after the summer of the bone marrow transplant I still needed the wheelchair to get around. I hadn't been to the mall in months and wanted to shop a little. My husband drove Allison and me to the mall with the wheelchair. I put on my mask I was required to wear and Allison was to be my designated "pusher". Pushing a chair should require at least one lesson before doing this. She was quite willing to push, but just hadn't had any practice. She did pretty good in the wide open spaces but when in the department stores in and around the clothes racks I was pushed into everything! I pulled over purse displays, knocked the glass displays in the jewelry department and of course we bumped into people. After doing some of my shopping I suggested she just park me in the middle of the mall outside one of the stores she wanted to go in. She was very hesitant and at first refused. I said "Allison, I'll be alright. Just park me by the benches and I'll rest and just watch the people. Take as long as you like." She agreed and reluctantly went into her teen store. When she came out I asked her why she didn't want to leave me. She paused a minute and then admitted that it felt like she was leaving a dog tied up outside to wait! I laughed pretty hard at that one.
I miss my girls, but I try to remember what I was like at 20 and 18. When I remember that I worked a full time job and was married at 20, I relax a little and know that they are really smart and they'll be okay.
I just got back from the second part of my birthday celebration. I went to see my sister Susie in Auburn, AL. Although I can't walk very far and get tired easily, I can still do road trips! Since I'm sitting on my butt instead of standing on my numb legs and feet, I can do pretty good with the driving. I've always loved traveling. Even in my twenties when I couldn't get anyone to travel with me, I didn't let it stop me. I'd pack up my VW and the ice chest rode shotgun! What fun. Susie was doing great. It had been just over a year since I'd seen her. She could tell how much I'd improved. I could get around a lot better and my eyes weren't light sensitive like last year. Previously she had to keep the blinds closed and lights low. My brother Scott and his wife Connie had driven me over there on their way to Birmingham and picked me up on their way back. This time was different. I couldn't walk far but we did get to go over to Chewacla State Park and drive to the top of the mountain. (I use this term mountain loosely as it's not really very big.) We got out on top and enjoyed the view and fresh air! We couldn't hike the trails but I still enjoyed being there. With such a cold winter this year everything was still bare and not much color. But there is nothing to compare to that earthy, woodsy smell! and I have missed that bunches.
After leaving Auburn and heading back, I missed the turnoff to Columbus, Ga. I crossed the Chattahoochee River and came into Georgia and found myself heading to Atlanta and knew I had messed up. Somehow I had missed the turnoff. I checked the map and saw that I wasn't too far from Warm Springs. President Roosevelt's Little White House was there and I had always wanted to visit this. I found my way to Warm Springs and visited the healing pools where FDR had been. It was so inspiring to see all the pictures of him and the children doing therapy in the water. I was using my walker while touring this museum and I could really relate to all those who needed this healing water. The Little White House is a couple of miles away and FDR would use a stage coach to travel back and forth. They had a great museum there and also motor scooters for people like me who couldn't walk the distance. This was great fun. I went everywhere that scooter would take me. I did have to walk through the house though. It was maybe only 1000 sq ft. It was very simple and I saw the twin bed that he died in. His own bedroom, maybe 10 x10, then his bathroom was next to it. I couldn't help but laugh at the bath. The curator said that everything in the house was left as it was when he died and he wasn't exaggerating. Even the toilet paper from April 12, 1945 was still there! They had a clear Lucite case built on the wall around this roll of really old brown toilet paper! I thought of all things historical, we might have done without this.
I'm going to finish the month off with enjoying a birthday cake and spending time with my brother David and my parents. I do have an appointment down at Shands in Gainesville March 30th, but that's a week away. I'll deal with it then!
Friday, March 5, 2010
My Cancer Story
This is what I’ve been up to for the last 18 years.
Well, I've been living in Jacksonville area (Orange Park) for about 20 years and recently moved to South GA in with my brother David and his wife. So I've really been out of touch with my Lakeland, FL friends. My home church Bethel Baptist out in Socrum Loop area was my only contact except a few relatives that still live in the area. (Wonderful people) They all had me on their prayer lists.
But back in ‘92 when my girls were just 3 & 1 years old I was 36 years old and diagnosed with NonHodgkins Lymphoma. It was inoperable and I found out later they didn’t think I had much of a chance! I went through chemo (and my mother, God Bless her soul came and stayed with me to help with the babies.) After six months of chemo I stayed in remission nine years! A miracle in itself. It's a blood cancer and they can't really cure it. It's in my lymphnodes and we have them all over our body. (Even the ankles!)
It came back in 2001 and fortunately they had new medicine and lots of new tests I had to do. (By this time they had a new kind of CATscan machine and had invented the PET scan!) For the next six years I would stay in remission for maybe 6 to 9 months at a time and then it would come back. They kept trying new drugs on me every time. I felt like a guinea pig. But my doc (oncologist) called me his "energizer bunny" because I kept on going and wouldn't give up! They finally ran out of all the drugs that would work on me and decided to do a bone marrow transplant.
I almost didn't make the requirements for that because of all the chemos (poisons) that I had had. But I saw the transplant doc and convinced him I could do this. He called my reg doc and told him he couldn't get over how good I looked for all I had been through. Nobody usually has as much chemo as I have had and lived to tell about it!
So the summer of '08 I went down to Shands in Gainesville and went through the process. I had to stay down there four months for this with a caregiver. There are a lot of rules and conditions you have to agree to. Because of various circumstances my oldest brother David was to take care of me (not an easy job). After five weeks in the hospital I moved to the Cancer Hope Lodge a few blocks from the hospital. I was still required to stay in Gainesville for another 100 days (I had to stay longer because I didn’t recoup very fast) Don't let anybody ever tell you this is easy! But the transplant itself was a piece of cake, it's just like getting a blood transfusion and I've had lots of those! But two weeks before the transplant, you go in the hospital and they start giving you the strongest chemo there is to get your blood counts and immune system down to zero. Then the fun starts. Talk about side effects! You can’t even imagine some of them! I won't even bore you with that.
I was hooked up to an IV pole for over a month. This is a real pain in the neck! Just to go to the bathroom, you have to untangle all the wires and unplug the IV machine and drag it with you to the potty. Anywhere you went that pole went with you, even in the shower! And you couldn’t get your CV line wet!
I'm doing pretty good now. I've been in remission one and a half years. Yea! I'm on disability and still have a lot of side effects, but my quality of life is good. I stayed at Hope Lodge in Gainesville when I wasn't in the hospital. I made a lot of friends there. But the hardest part about cancer is that you make friends with other patients and then some of them die. I don't know how the nurses deal with it. I take tons of medicines everyday and stay away from crowds.
I have some friends I grew up with (Melody & Lydia Harrell) that live in Gainesville and they would come to see me. These sisters lived a couple of houses down from me growing up. So we're like family. Several of my library friends and my Aunt Ann & Uncle Jick came to visit me at Hope Lodge and hospital also. To come in my hospital room you had to wash your hands and wear a mask and cover coat. The room also had a special air filter that ran all the time. I had no immune system so I had to be very careful.
The December of '07 was when they were testing 4 of my siblings to see if they could be donors for me. My mom said she'd pray that ONE would be a match. I said "no" pray that ALL 4 would be a match. Unfortunately none of them matched me and then they tested my brother Bill in NY and he didn't match either. (they all matched each other!), so my family teases me that I'm adopted. Well, then they started searching the donor banks. It took a couple of months and then I got THE call. They said I not only had a match, I had 4 matches! Usually, you're lucky to get 1 or 2 and sometimes have to wait months or years! My mom's prayer for 4 matches came through! They picked the best match for me and used it. I don't know who my donor was but they had to fly in my new marrow. I now have TWO DNA's! My blood tests one DNA and my skin and body have a different DNA. My donor had my same blood type or else that would have changed too! It was a tissue match, not a blood match. My donor marrow has completely taken over my blood sytem. I am so thankful for my donor! What a selfless thing to do for a stranger.
While going through this misery, funny things that would happen! My brothers and sister-in-laws just all pulled together and got me through this. We'd laugh about me throwing up and messing my pants! I had no choice, I just had to laugh about it and move on. I had to go back in the hospital a couple of more times before I could leave Gainesville. My body doesn’t do fevers, so they couldn’t tell when I had infections. The last hospital stay I had a very serious staff infection. I didn’t realize how bad off I was till several days later I went out my door and saw all the Warning signs posted on it! It was practically enter at your own risk! Even now when we get together, we joke about stupid things that I had to go through!
I think every church in the US and Europe were praying for me. My mother's side of the family are mostly ministers and missionaries! So I had an inside advantage! The prayers are why I'm still here. God's got a purpose for me, but I have no idea what it is? I keep asking God to give me a hint. I’m a patient person, so I’ll wait for the answer.
From 2004 till I went to Gainesville in May of 2008 I worked at the Orange Park Library in the Reference Department. I had a wonderful boss who would let me work around my chemo schedules. At this time I was very weak but I could sit at the computer and answer the phone and patrons’ questions. The friends I worked with at the library are the greatest! They got me through a lot of hard times. At one time I was taking some shots to build up my white cells and had a bad reaction. My eyes started getting sensitive to light! It became so bad I could barely see. I would stumble into walls and try not to trip! I wore my cap over my bald head and dark glasses to work. Sandy, Charlotte and Marie would help me get around! The patrons were great to me. Some would come in and lift my cap to see how my hair was doing! And would rub my head for good luck! A lot of them had questions for me about my cancer and would tell me their cancer stories! Working at the library was so much fun (hard work too) but we would be laughing and having fun all the time.
It has never bothered me to talk about my cancer and I have talked to complete strangers everywhere. At the doctor’s office, the library, and out shopping at Walmart! Little kids especially have questions. Their parents usually try to keep them from staring at me, but I let them know it is alright and will show them my bald head and laugh with them!
I learned a lot about my brothers during this time. David is very reserved and quiet and we kept to ourselves a lot at the Hope Lodge the first couple of weeks, but I noticed several of the women (patients and caregivers) were noticing him! He is married and didn’t pay attention. But I noticed them giving him the eye! And doing a little flirting. This tickled me to no end. He was oblivious to it!
My brother Bud stayed with me some near the end at the Lodge and when I had to go back in the hospital. This was a completely different experience! He and David are miles apart in personality! In the hospital he could stay with me 24 hours and there was a chair that made into a bed. So he was there a lot. Well, one time they sent up a technician to put a PICC line in my upper arm. (This line runs up your arm and to your heart.) Bud wasn’t queasy at all and wanted to watch how she did this. I couldn’t believe what was happening, The tech started flirting with him and he with her! A 10 minute procedure turned into a half hour comedy skit! I knew he wasn’t going to ask her out. (Even though he wanted to) and she was doing her best at killing time and giving him every opportunity! It was so hysterical! The hormones were filling the room! I might as well not even have been there! She finally left! Bud asked me for months afterwards to get her phone number! I knew she wasn’t paying attention to me and what she was there for because the next day that arm was swollen twice its size! They scanned it and realized I had a blood clot and pulled the line out. Later another PICC line was put in the other arm by a different tech. It only took 10 minutes and didn’t hurt a bit!
For Bud this hospital stay was a social event! He flirted with all the nurses and they loved him! It wasn’t boring when he was there! One night they gave me 2 (count them) 2 Ambien CRs. I was hallucinating and trying to get out of bed and talking all while in my sleep. Bud says he just would answer me and talk to me while I was dreaming!!! I never want to take those pills again!
One time during July, while I was doing pretty good, David took a week break and my mother came to stay with me. Well, until she came David and I were pretty anonymous. We stayed a lot in our suite and I slept a lot. My mama is not shy in the least. First thing she did was go exploring The Hope Lodge! She had most importantly to find out where the coffee pot was! Of course we weren’t allowed to bring any food or drinks (except water) into our suites, so she had to stay in the dining area to eat or drink her coffee. This was the main hub for socializing. Now if you know my mama, she loves to talk and visit! This turned into “Grandma’s Summer Camp” for her. She soon knew everybody and their story and she wasn’t shy about telling mine and David’s. After she left and David came back, it was funny because now everybody was saying “hello” and wanting to talk to us. They knew who we were! This didn’t bother me at all, but David had a little trouble getting use to it. Like I said, married or not, those women would make eyes at him!
Even David’s wife Gail stayed with me a few days near the end. I couldn’t believe it when one of the manager’s started flirting with her. He couldn’t do enough for us! This is one strange world!
My sister-in-law Connie came to stay with me for a few days towards the last. This was an unexpected blessing. Even though she had been married to my brother Scott for several years, I still didn’t know her very well. She lived in Lakeland and I lived in Orange Park. After an hour together it was like we had known each other for ever! We had a great time.
At first I didn’t have much trouble with my stomach, but my appetite went away and I couldn’t eat much. I’ve always said you have to start out with a bit of fat on you so you have enough to lose when you get sick. Well, I started getting sick to my stomach. One of the first times it happened I had no warning. I was in the living room of our suite. I looked around for something, anything to toss my cookies in! The only thing to grab was a Universal Studio’s cap! Upchuck right into the cap! Of course it saw the garbage can right away. After that I always made sure I had something with me at all times to use just in case. I had no warning. For some reason Bud thought this was funny! Anything could trigger a throwup. Smells being the worst offender. Bud soon learned all he had to do was talk about something and it would trigger an upchuck! He had lots of fun with that!
When I came back to Orange Park I had a wheel chair. I could get around the house pretty good, but there was no place else until I got some strength back. I had already bought a Rollator (walker with four wheels) back in July off the Internet. I have neuropathy in my legs and feet, so I can’t walk very far. The rollator is great for short trips! Especially when I would go back to visit my friends at the library. When I go to Publix or Walmart I always use those motorcarts! These are great. I can shop a long time with this.
When in Gainesville, David would take me with him to shop and I had to learn how to operate these motorcarts. I was a sight! I wore a cap, dark glasses, and a mask! I’m surprised I was allowed into these places. David said we looked like Bonnie and Clyde! At first I bumped into a lot of displays, fellow shoppers, anything that was in my way! I have gotten stuck in some of the narrow aisles and had to just bulldoze my way out! I’m a lot better at it now. While I’m shopping in the motorcart, most people are very kind and usually offer to help me reach something! I’ve found that for the most part everyone has been very kind. Even strangers I talk to tell me they will pray for me. I always say “please do”. I can use all the prayers I can get.
And if cancer isn’t bad enough, at the end of ’02 the cancer spread to my thyroid. Well my thyroid had quit working ten years ago, so it was no biggie to have this taken out. While I lay in bed recovering all I could see was how dirty my ceiling fans were! As soon as I felt better I was going to clean them. Jan. 3rd, 2003 I climbed up on our dining room table to clean this ceiling fan. The table was a huge sturdy oak table so I had no doubt it could hold my weight. What I didn’t realize was that the four legs were not on the edge but more towards the middle. As soon as I put both feet on the table, it tipped and I slid off and broke my left leg! My girls came running. I knew I couldn’t get up, so I told them to hand me the phone and bring me a pillow for my head. (Of course I knew my leg was broken, I have broken my right arm once and my left arm twice! I was not new at this!) I called 911 and they came really quick. Thank the Lord for morphine! Unfortunately they had to cut up my favorite pair of jeans! Bummer. Took me to the hospital and fixed me up.
In March 2003, I was suppose to have radiation on my upper chest and neck just to make sure they got all the cancer cells. So hobbling in on crutches, I had to do radiation treatments! This is very nerve wracking! First though, they had to make me a mask to bolt my head to the table so I wouldn’t move during treatment. They asked if I wanted a sedative for making this mask and being the brave soldier I was, I said no. To make this Hannible Lecter mask you have to lie there on the table while they put all this stuff on your face (leaving nose holes so you can breathe). You have to lie still for like 20 minutes while the mask dries. I didn’t think it would bother me, but by the time they took it off I could hardly breathe and was in a panic! So if you ever have to have this done, TAKE THE MEDS!
I managed to get through all the radiation treatments broken leg and all. This is really painful in the throat! You don’t want to even swallow your saliva! Everybody carries around a spit cup! I saw this a lot at Hope Lodge. We had a lot of radiation patients there. So I knew what this was all about. Been there, done that! Drink ice cold milk shakes, it numbs the throat so you can get some nourishment down.
I know I’m still on prayer lists in Orange Park and around the country. I have to say this has lifted me up and kept me going. The doctors are baffled at my recovery and how long I have lasted. I’m on borrowed time and appreciate every day! When I first got cancer I prayed I’d live long enough to get my daughters through elementary school. The cancer came back when my youngest daughter was in sixth grade. Then I started praying to last till they were out of high school. My youngest graduated in 2009. Now I’m praying to see them out of college!
At night when going to bed, I pray and always end it with, Now I lay me down to sleep, I pray the Lord my soul to keep. If I should die before I wake, I pray the Lord my soul to take.
I’m always surprised when I wake up in the morning, and thank Jesus I have another day!
This is what I’ve been up to for the last 18 years.
Well, I've been living in Jacksonville area (Orange Park) for about 20 years and recently moved to South GA in with my brother David and his wife. So I've really been out of touch with my Lakeland, FL friends. My home church Bethel Baptist out in Socrum Loop area was my only contact except a few relatives that still live in the area. (Wonderful people) They all had me on their prayer lists.
But back in ‘92 when my girls were just 3 & 1 years old I was 36 years old and diagnosed with NonHodgkins Lymphoma. It was inoperable and I found out later they didn’t think I had much of a chance! I went through chemo (and my mother, God Bless her soul came and stayed with me to help with the babies.) After six months of chemo I stayed in remission nine years! A miracle in itself. It's a blood cancer and they can't really cure it. It's in my lymphnodes and we have them all over our body. (Even the ankles!)
It came back in 2001 and fortunately they had new medicine and lots of new tests I had to do. (By this time they had a new kind of CATscan machine and had invented the PET scan!) For the next six years I would stay in remission for maybe 6 to 9 months at a time and then it would come back. They kept trying new drugs on me every time. I felt like a guinea pig. But my doc (oncologist) called me his "energizer bunny" because I kept on going and wouldn't give up! They finally ran out of all the drugs that would work on me and decided to do a bone marrow transplant.
I almost didn't make the requirements for that because of all the chemos (poisons) that I had had. But I saw the transplant doc and convinced him I could do this. He called my reg doc and told him he couldn't get over how good I looked for all I had been through. Nobody usually has as much chemo as I have had and lived to tell about it!
So the summer of '08 I went down to Shands in Gainesville and went through the process. I had to stay down there four months for this with a caregiver. There are a lot of rules and conditions you have to agree to. Because of various circumstances my oldest brother David was to take care of me (not an easy job). After five weeks in the hospital I moved to the Cancer Hope Lodge a few blocks from the hospital. I was still required to stay in Gainesville for another 100 days (I had to stay longer because I didn’t recoup very fast) Don't let anybody ever tell you this is easy! But the transplant itself was a piece of cake, it's just like getting a blood transfusion and I've had lots of those! But two weeks before the transplant, you go in the hospital and they start giving you the strongest chemo there is to get your blood counts and immune system down to zero. Then the fun starts. Talk about side effects! You can’t even imagine some of them! I won't even bore you with that.
I was hooked up to an IV pole for over a month. This is a real pain in the neck! Just to go to the bathroom, you have to untangle all the wires and unplug the IV machine and drag it with you to the potty. Anywhere you went that pole went with you, even in the shower! And you couldn’t get your CV line wet!
I'm doing pretty good now. I've been in remission one and a half years. Yea! I'm on disability and still have a lot of side effects, but my quality of life is good. I stayed at Hope Lodge in Gainesville when I wasn't in the hospital. I made a lot of friends there. But the hardest part about cancer is that you make friends with other patients and then some of them die. I don't know how the nurses deal with it. I take tons of medicines everyday and stay away from crowds.
I have some friends I grew up with (Melody & Lydia Harrell) that live in Gainesville and they would come to see me. These sisters lived a couple of houses down from me growing up. So we're like family. Several of my library friends and my Aunt Ann & Uncle Jick came to visit me at Hope Lodge and hospital also. To come in my hospital room you had to wash your hands and wear a mask and cover coat. The room also had a special air filter that ran all the time. I had no immune system so I had to be very careful.
The December of '07 was when they were testing 4 of my siblings to see if they could be donors for me. My mom said she'd pray that ONE would be a match. I said "no" pray that ALL 4 would be a match. Unfortunately none of them matched me and then they tested my brother Bill in NY and he didn't match either. (they all matched each other!), so my family teases me that I'm adopted. Well, then they started searching the donor banks. It took a couple of months and then I got THE call. They said I not only had a match, I had 4 matches! Usually, you're lucky to get 1 or 2 and sometimes have to wait months or years! My mom's prayer for 4 matches came through! They picked the best match for me and used it. I don't know who my donor was but they had to fly in my new marrow. I now have TWO DNA's! My blood tests one DNA and my skin and body have a different DNA. My donor had my same blood type or else that would have changed too! It was a tissue match, not a blood match. My donor marrow has completely taken over my blood sytem. I am so thankful for my donor! What a selfless thing to do for a stranger.
While going through this misery, funny things that would happen! My brothers and sister-in-laws just all pulled together and got me through this. We'd laugh about me throwing up and messing my pants! I had no choice, I just had to laugh about it and move on. I had to go back in the hospital a couple of more times before I could leave Gainesville. My body doesn’t do fevers, so they couldn’t tell when I had infections. The last hospital stay I had a very serious staff infection. I didn’t realize how bad off I was till several days later I went out my door and saw all the Warning signs posted on it! It was practically enter at your own risk! Even now when we get together, we joke about stupid things that I had to go through!
I think every church in the US and Europe were praying for me. My mother's side of the family are mostly ministers and missionaries! So I had an inside advantage! The prayers are why I'm still here. God's got a purpose for me, but I have no idea what it is? I keep asking God to give me a hint. I’m a patient person, so I’ll wait for the answer.
From 2004 till I went to Gainesville in May of 2008 I worked at the Orange Park Library in the Reference Department. I had a wonderful boss who would let me work around my chemo schedules. At this time I was very weak but I could sit at the computer and answer the phone and patrons’ questions. The friends I worked with at the library are the greatest! They got me through a lot of hard times. At one time I was taking some shots to build up my white cells and had a bad reaction. My eyes started getting sensitive to light! It became so bad I could barely see. I would stumble into walls and try not to trip! I wore my cap over my bald head and dark glasses to work. Sandy, Charlotte and Marie would help me get around! The patrons were great to me. Some would come in and lift my cap to see how my hair was doing! And would rub my head for good luck! A lot of them had questions for me about my cancer and would tell me their cancer stories! Working at the library was so much fun (hard work too) but we would be laughing and having fun all the time.
It has never bothered me to talk about my cancer and I have talked to complete strangers everywhere. At the doctor’s office, the library, and out shopping at Walmart! Little kids especially have questions. Their parents usually try to keep them from staring at me, but I let them know it is alright and will show them my bald head and laugh with them!
I learned a lot about my brothers during this time. David is very reserved and quiet and we kept to ourselves a lot at the Hope Lodge the first couple of weeks, but I noticed several of the women (patients and caregivers) were noticing him! He is married and didn’t pay attention. But I noticed them giving him the eye! And doing a little flirting. This tickled me to no end. He was oblivious to it!
My brother Bud stayed with me some near the end at the Lodge and when I had to go back in the hospital. This was a completely different experience! He and David are miles apart in personality! In the hospital he could stay with me 24 hours and there was a chair that made into a bed. So he was there a lot. Well, one time they sent up a technician to put a PICC line in my upper arm. (This line runs up your arm and to your heart.) Bud wasn’t queasy at all and wanted to watch how she did this. I couldn’t believe what was happening, The tech started flirting with him and he with her! A 10 minute procedure turned into a half hour comedy skit! I knew he wasn’t going to ask her out. (Even though he wanted to) and she was doing her best at killing time and giving him every opportunity! It was so hysterical! The hormones were filling the room! I might as well not even have been there! She finally left! Bud asked me for months afterwards to get her phone number! I knew she wasn’t paying attention to me and what she was there for because the next day that arm was swollen twice its size! They scanned it and realized I had a blood clot and pulled the line out. Later another PICC line was put in the other arm by a different tech. It only took 10 minutes and didn’t hurt a bit!
For Bud this hospital stay was a social event! He flirted with all the nurses and they loved him! It wasn’t boring when he was there! One night they gave me 2 (count them) 2 Ambien CRs. I was hallucinating and trying to get out of bed and talking all while in my sleep. Bud says he just would answer me and talk to me while I was dreaming!!! I never want to take those pills again!
One time during July, while I was doing pretty good, David took a week break and my mother came to stay with me. Well, until she came David and I were pretty anonymous. We stayed a lot in our suite and I slept a lot. My mama is not shy in the least. First thing she did was go exploring The Hope Lodge! She had most importantly to find out where the coffee pot was! Of course we weren’t allowed to bring any food or drinks (except water) into our suites, so she had to stay in the dining area to eat or drink her coffee. This was the main hub for socializing. Now if you know my mama, she loves to talk and visit! This turned into “Grandma’s Summer Camp” for her. She soon knew everybody and their story and she wasn’t shy about telling mine and David’s. After she left and David came back, it was funny because now everybody was saying “hello” and wanting to talk to us. They knew who we were! This didn’t bother me at all, but David had a little trouble getting use to it. Like I said, married or not, those women would make eyes at him!
Even David’s wife Gail stayed with me a few days near the end. I couldn’t believe it when one of the manager’s started flirting with her. He couldn’t do enough for us! This is one strange world!
My sister-in-law Connie came to stay with me for a few days towards the last. This was an unexpected blessing. Even though she had been married to my brother Scott for several years, I still didn’t know her very well. She lived in Lakeland and I lived in Orange Park. After an hour together it was like we had known each other for ever! We had a great time.
At first I didn’t have much trouble with my stomach, but my appetite went away and I couldn’t eat much. I’ve always said you have to start out with a bit of fat on you so you have enough to lose when you get sick. Well, I started getting sick to my stomach. One of the first times it happened I had no warning. I was in the living room of our suite. I looked around for something, anything to toss my cookies in! The only thing to grab was a Universal Studio’s cap! Upchuck right into the cap! Of course it saw the garbage can right away. After that I always made sure I had something with me at all times to use just in case. I had no warning. For some reason Bud thought this was funny! Anything could trigger a throwup. Smells being the worst offender. Bud soon learned all he had to do was talk about something and it would trigger an upchuck! He had lots of fun with that!
When I came back to Orange Park I had a wheel chair. I could get around the house pretty good, but there was no place else until I got some strength back. I had already bought a Rollator (walker with four wheels) back in July off the Internet. I have neuropathy in my legs and feet, so I can’t walk very far. The rollator is great for short trips! Especially when I would go back to visit my friends at the library. When I go to Publix or Walmart I always use those motorcarts! These are great. I can shop a long time with this.
When in Gainesville, David would take me with him to shop and I had to learn how to operate these motorcarts. I was a sight! I wore a cap, dark glasses, and a mask! I’m surprised I was allowed into these places. David said we looked like Bonnie and Clyde! At first I bumped into a lot of displays, fellow shoppers, anything that was in my way! I have gotten stuck in some of the narrow aisles and had to just bulldoze my way out! I’m a lot better at it now. While I’m shopping in the motorcart, most people are very kind and usually offer to help me reach something! I’ve found that for the most part everyone has been very kind. Even strangers I talk to tell me they will pray for me. I always say “please do”. I can use all the prayers I can get.
And if cancer isn’t bad enough, at the end of ’02 the cancer spread to my thyroid. Well my thyroid had quit working ten years ago, so it was no biggie to have this taken out. While I lay in bed recovering all I could see was how dirty my ceiling fans were! As soon as I felt better I was going to clean them. Jan. 3rd, 2003 I climbed up on our dining room table to clean this ceiling fan. The table was a huge sturdy oak table so I had no doubt it could hold my weight. What I didn’t realize was that the four legs were not on the edge but more towards the middle. As soon as I put both feet on the table, it tipped and I slid off and broke my left leg! My girls came running. I knew I couldn’t get up, so I told them to hand me the phone and bring me a pillow for my head. (Of course I knew my leg was broken, I have broken my right arm once and my left arm twice! I was not new at this!) I called 911 and they came really quick. Thank the Lord for morphine! Unfortunately they had to cut up my favorite pair of jeans! Bummer. Took me to the hospital and fixed me up.
In March 2003, I was suppose to have radiation on my upper chest and neck just to make sure they got all the cancer cells. So hobbling in on crutches, I had to do radiation treatments! This is very nerve wracking! First though, they had to make me a mask to bolt my head to the table so I wouldn’t move during treatment. They asked if I wanted a sedative for making this mask and being the brave soldier I was, I said no. To make this Hannible Lecter mask you have to lie there on the table while they put all this stuff on your face (leaving nose holes so you can breathe). You have to lie still for like 20 minutes while the mask dries. I didn’t think it would bother me, but by the time they took it off I could hardly breathe and was in a panic! So if you ever have to have this done, TAKE THE MEDS!
I managed to get through all the radiation treatments broken leg and all. This is really painful in the throat! You don’t want to even swallow your saliva! Everybody carries around a spit cup! I saw this a lot at Hope Lodge. We had a lot of radiation patients there. So I knew what this was all about. Been there, done that! Drink ice cold milk shakes, it numbs the throat so you can get some nourishment down.
I know I’m still on prayer lists in Orange Park and around the country. I have to say this has lifted me up and kept me going. The doctors are baffled at my recovery and how long I have lasted. I’m on borrowed time and appreciate every day! When I first got cancer I prayed I’d live long enough to get my daughters through elementary school. The cancer came back when my youngest daughter was in sixth grade. Then I started praying to last till they were out of high school. My youngest graduated in 2009. Now I’m praying to see them out of college!
At night when going to bed, I pray and always end it with, Now I lay me down to sleep, I pray the Lord my soul to keep. If I should die before I wake, I pray the Lord my soul to take.
I’m always surprised when I wake up in the morning, and thank Jesus I have another day!
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