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.
Showing posts with label NonHodgkins lymphoma. Show all posts
Showing posts with label NonHodgkins lymphoma. Show all posts
Tuesday, May 18, 2010
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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