Coping With Hope
(CopingWithHope.com—All Rights Reserved)
Lyn's
Journey With Cancer
An Inspirational Story of a
Woman Coping With Cancer
This web page is dedicated to my wife Lyn who has learned how to effectively Cope with Cancer. She has been down a long road in her battle against Breast Cancer. Throughout this entire journey there have been many detours along life’s road that have temporarily provided setbacks. However, the one thing that has remained constant has been Lyn’s faith in God. Faith in God, and one’s spirituality, does not automatically exempt you from the pain and emotional trauma that Cancer often brings. What is does do is provide you with something to hold on to that is constant and never changing. What is does offer is Hope for tomorrow. With a faith filled perspective you can battle Cancer more effectively. It allows you to change your perspective and keep focused on something greater than yourself. As we have found, you can get through Cancer more effectively if you realize that "You can control your Outlook, because God is in control of your Outcome." For those not familiar with Lyn we have provided a short story about her bout with this dreaded disease.
It was the spring of 1996 and things were going along relatively well. We had just become new members of a Baptist church in our hometown. We both had good jobs and our family was doing fine. Life just seemed to roll along without much effort, or so I thought.
February I noticed a small lump in my right breast during one of my regular self exams. Feeling any kind of lump is always a concern but in the back of my mind I thought it might well be another watery cyst. I tended to have those and in fact it was not that long ago that I had one aspirated. At my first OBGYN visit in March the physician tended to support the same theory and set up another appointment to have an aspiration done.
Later in the month, I saw the specialist who in fact confirmed the earlier diagnosis and withdrew water from my right breast. What a relief, I thought to myself, as I prepared to leave. The physician asked me how my left breast was and I immediately replied, “no problem.” He indicated that since I was already here perhaps I would want to have that one checked, as well. I was in a hurry but reluctantly agreed to have him confirm what I already knew. What a shock when I learned that I had another cyst in my other breast that I had failed to locate. When the physician inserted the needle to drain what we both thought was another watery cyst, I cried out and literally jumped from the table. The cyst was a hard mass, not a watery pocket. Fear immediately gripped me. I had never had a solid mass in my breast before and this meant that further tests would need to be done.
In April they ordered another Mammogram but that was a mistake because the invasive procedure I had in March had just clouded the films further. As a result, they referred me to a surgeon for further evaluation. She and I hit it off, right off the bat. She was an amazing woman and had a great reputation in the medical community. Dr. Mary had found no reason for concern but calculated that I would need what was called a needle biopsy to definitely rule out any problem in my left breast. Wednesday, April 24th, 1996 I had the biopsy done and knew I would be getting the results back on Friday. However, I had to assist on a job fair in another city so I asked Dr. Mary if she could just call my husband at work and advise him of the results.
Little did I know that my husband had planned on taking a half day off from work to prepare a surprise Lobster dinner for me. He had been planning this because of all the stress we had both been under about the suspicious mass in my breast. However, there had been no reason for concern and Randy had planned on our celebrating the good news that I was Cancer free. During the mid part of the day Randy received a phone call in his office while he was having a meeting with several of his associates. Dr. Mary asked him if she was alone and he said, “no, but that was okay because he knew what she was going to tell him.” She again asked, if he wanted to be alone, and again he said, “no just go ahead and deliver the good news.” Dr. Mary said in the softest spoken voice, “Randy your wife has Cancer.” There was deafening silence on both ends of the phone and Randy asked if there had been a mistake and she said, “no.” Dr. Mary indicated that we would need to make plans to come to her office for further discussion on where we would go from here.
Randy drove home and pulled all the blinds and sat in a darkened game room for over three hours waiting for me to come home. I recall feeling rather chipper that day in anticipation of the good news. As I rolled the car into the garage and came through the kitchen, I called out to Randy that I thought he would have a celebratory dinner prepared but since he didn’t that must have meant we were going out. As I passed the door into the game room I took one look at him and proclaimed, “I have Cancer don’t I”. With that I went to the couch, we held hands, and cried together for what seemed like hours.
Once I got my pity party over it was time to go to work. I am a faith filled woman who believes in God and I knew that whatever was happening to me would be according to his plan and purpose for my life. However, I had to ask myself, was I willing to believe and put into action what I professed to believe? It was always easy before putting steps to my walk when things were going well. Suddenly that didn’t seem as easy to accomplish and yet, I knew that this was the only way to make it through this dreaded disease.
Friday May 3rd, 1996 I had my first surgery, a lumpectomy on my left breast to get the Cancer and they also checked my lymph nodes to determine if the Cancer had spread further. However, everyone's best guess was that it hadn't. Monday, May 6th Dr. Mary called back to say that my margins were not clean enough and they were going to have to go back and do another surgery to make sure all the Cancer had been removed. That was also the day I received the dreaded news that the Cancer was in my lymph nodes and would probably mean I would have to have Chemotherapy.
Tuesday May 10th I had my second breast surgery and at that time they inserted a medi-port in my chest so that I could be administered chemo. I had never been down this road before and was concerned. I didn’t want just any doctor to treat me. I wanted a doctor who believed in the power of the Holy Spirit.
As a result, we actually picked five of the best oncologists and went doctor shopping. As I sat and visited with the doctor, Randy took extensive notes. I recall how nervous all the questions and note taking made some. When we brought up the issue of faith, several became nervous and didn’t quite know what to say. Another who was highly recommended talked to me about chemo recipes as if we were baking a cake. Still another, who had been in possession of my file for weeks, started talking about the wrong breast and asking me about procedures I hadn’t even had. I kept thinking that there is no way I can work with any of these people. Then out of no where we found him, Dr. Greg. He was a kind, warm hearted person, who was not afraid to discuss spirituality and that made our choice easy. Dr. Greg was not only highly qualified but faith filled, as well.
Friday June 21st, 1996 I started my first chemo treatment. I had calculated that the chemo room was going to be very depressing but it really wasn’t. The staff and other patients were actually quite pleasant. I remember the pain I felt for the first time as they plugged the large needle in my chest into the port at 11am and how relieved I was at the finish around 5pm. I had a combination of 3 drugs, Adriamycin (the red devil), Cytoxan, and 5Fu. The only thing I recall was the feeling of a metal taste in my mouth which still haunts me to this day.
I had been given anti-nausea drugs to control the sickness that often comes with chemo but actually felt quite good on the way home. Even into the evening, I felt like I perhaps was going to be one of the lucky ones, then it hit me. I began to be sick like I never had been before. In fact, I became so ill, Randy had to call the oncologist late in the evening just to get something for the sickness because it just kept coming in waves. I stayed sick all weekend but by Sunday night began to feel a little better and then Monday got up and went to work.
I had determined that Cancer was going to be an uninvited guest in my life and that I was not going to have it define who I was or how I lived. So even if I felt like I had morning sickness times ten, I went on in to work. I developed an openly defiant attitude towards Cancer and I prayed quite a lot. I knew that God may or may not be able to stop my sickness but he could help me control how I looked at things. Your mental approach to Cancer is so vital to how you deal with it. You either allow it to control you or you choose to control it.
Friday July 12th I had another chemo treatment and was told that it was around this time period that one’s hair usually falls out. I had already purchased a wig just in case but was aware that a small percentage of patients beat the odds. I again thought I would be in that group. During this time, my husband had been campaigning for a director’s position on the board of an international association which covered 135 countries. Although he had chosen to drop out due to my condition, I urged him to continue as we wanted to live life as normal as possible. As a result of my nagging, we went to St. Paul Minnesota where he waged his campaign and won. Because of this win, in 2000 he would serve as President of one of the largest associations in American and we were both so excited about the prospects for change nationally.
I recall that all during the conference where he was elected I had not worn my wig so everyone knew what my hair looked like. Randy was to be sworn in on Tuesday night at the big black tie affair in front of over 2,000 people. During Tuesday afternoon I recall brushing my hair and seeing large gobs of it fall out on the bed. I began to panic as I was just hours away from the banquet. I was in the restroom with tears rolling down my cheeks when I began to pray, “Lord, just somehow help me stop my hair from falling out if just for tonight and then tomorrow I don’t care if you make me completely bald.” Then the miracle and answer to a prayer happened. The hair loss stopped.
I was able to use a hair band and creatively fix my hair where you would have never known I had lost so much of it. There we were up at the head table in front of over 2,000 people and God had kept his promise to me. We made it through the evening and I thanked him. When I got up Wednesday morning, I was completely bald. We were to have attended a closing luncheon for the new board Randy was just elected to but I didn’t want to go wearing a wig. Randy kept telling me it was alright, just wear a cap since it was casual and everyone would still love me. To this day I don’t know how they knew but when I arrived at the luncheon most of the other spouses were also wearing baseball caps just to make me feel comfortable. This again, was another miracle and a way that God moved in each of their hearts.
Speaking of miracles you will find plenty of them if you look for them during a bout with Cancer. Many people fail to see the smaller ones concentrating on asking for the miracle of healing. There is nothing wrong with that unless you just want to pass over all the other miracles that God brings your way. Let me explain. Cancer can be a financial drain, even with good insurance. I recall one month when Randy was really down. We were basically $500 short of being able to pay our bills and didn’t even know where we were going to be able to find it. We had used a large amount of our savings already and didn’t really want to dip anymore into that but figured we may have to. We are very private people and no one, even our closest friends, knew about our financial situation.
Randy and I attended Sunday school the next week and he went to the restroom. When he came back there was a card in his Bible. He asked me who put it there but I really hadn’t even noticed. We figured it was just another get well card and would read it later. About an hour later in church, I asked him who the card was from and he opened it. The card read something like, “God knows your needs”. Inside was a cashier’s check for $500, just the amount we were short. Tears began to flow down both our cheeks. No one but God knew of our situation, and yet through his connection with someone in the church they were given a burden to assist and that assistance was in just the right amount for our need. Have you ever had a little voice telling you to do something you might not normally do? Sometimes we don’t listen to that voice and ignore it. In this case, I am thankful someone listened to the gentle voice of God because it saw us through a difficult time. If you hear that voice, please act because it may be the very thing that God needs to have happen to give comfort to a member of his family.
October 1996 started my daily radiation treatments which, would span over six weeks. This was a great imposition but something I definitely needed to do. The radiation made my skin tuff like leather and it caused me to have heartburn but again I made it through with a good attitude because of the many prayers that were being lifted up in my name and because of my strong belief that God would protect me.
Because my tumor was Estrogen Receptive positive I was placed on the anti-Cancer drug Tamoxifen. This was supposed to have been the best drug on the market. I took it for about three years until I found that it almost shut my liver and kidney down and thus I had to go off it. Consequently, there was no other drug I could take. I continued with regular check-ups and the periodic fallout that comes with chemo and Cancer therapy. The chemo caused premature irreversible menopause, diabetes, and a weakening of the bones in my jaw. I don’t say all this to be morbid but to let you know that what I went through was physically and emotionally no picnic. It was though something survivable, especially with faith in God and in how he allowed me to approach this disease. As of the spring of 2004, I had been Cancer free for eight years, or so I thought.
It was nearing time for my annual Mammogram in the summer of 2004 and as I had found with each annual prior to this one, I was always uptight. When you are a Cancer survivor you deal with the fact that you are in remission and the potential for recurrence is always a real possibility. As in past years, my tension would rise and then after the exam I would be back to normal. However, this year’s test wouldn’t be the case. The radiologist immediately told me she saw something unusual and referred me back to Dr. Mary. This immediately sent shock waves through me but I gathered myself and got back on track. Dr. Mary read the report and it indicated that there was a rather large area of concern on the Mammogram and due to my history, it needed to be checked out further. I thought here we go again, another needle biopsy just like 1996. The biopsy indicated the large area turned out to be calcification and there was no cause for concern. However, Dr. Mary found a very tiny spot that was so small she had to look at it with a magnifying glass. She compared it to my last Mammogram and said this wasn’t here last year. As a result and because of my history they ordered another lumpectomy to remove the small object.
A few days after the lumpectomy and again with very little concern I received the second most shocking phone call in my life from Dr. Mary. She said the lab report indicated I now had a completely different type of Cancer that was lobular. My 1996 Cancer in my left breast was ductal and this was now invasive lobular in my right breast. I remember crying but just not for very long. I had a gut check and then went into my warrior and prayer mode. I was again ready for battle.
We saw Dr. Mary a few days later to discuss what the next steps would be in dealing with this Cancer. I remember my husband asking her about my right leg. For the past few months I had been bothered by a severely strained muscle in my right leg. In fact, it had gotten so bad that on my airplane trip back from Kansas City, just a few weeks earlier, I had to be wheel chaired onto the plane because of the pain. Randy asked the doctor could we also do some tests to find out what was causing that pain, as well?
Dr. Mary ordered a very comprehensive PET scan which would tell us something conclusively about the leg and if the Cancer had spread anywhere else. When the lab report came back it didn’t find anything in my right leg and I was relieved. However, it did find a spot on my second left rib. Although there was some initial suspicion everyone, including the lab, left open the possibility that the suspicious area was due to my 1996 surgeries and radiation treatments. Dr. Mary wanted to be safe, so she ordered a Bone Scan. I recall being troubled by the physicians at the center where this was done because after the scan they kept asking me different questions and then said they wanted to take more pictures of my right leg.
I recall that we had made a series of appointments for a particular day, a Tuesday I believe, to get the results of the Bone Scan with Dr. Mary, to see the radiologist Dr. Janice about the spot on my rib, and with Dr. Jane a medical oncologist just to discuss treatment options now that I had Breast Cancer once again. Dr. Mary said that the PET scan had missed it but the Bone Scan had picked up the fact my right leg did not have a muscle pull but Metastatic Breast Cancer. My world was immediately rocked! How could I go from being an 8 year survivor, to getting Cancer again, and now to getting a treatable but not curable disease? This meant I was not fighting two completely different types of invasive Cancer at the same time. How on earth could that be happening to me?
This is the point where my Satan Parrot went into its active mode. You say, what is a Satan Parrot? It is that invisible bird that Satan uses to sit right on your shoulder within whispering voice of your ear. Like some tropical birds, he just keeps repeating the same thing in a quiet voice over and over. In my case, he said things like, “If your God was a loving God why would he allow this to happen.” “I thought you said you had a loving God, if so then why on earth is he punishing you.” The voice was strong and consistent and was intent on causing me to have a lack of faith. Satan’s greatest conquest is bagging a fallen Christian. I was bound and determined not to let that happen. That is not to say it is an easy task to fight off Satan’s arrows of fear and indecision. There were times when I felt low and in despair but then I kept coming back to God’s promises which got me through these low points.
Because the Cancer in my right leg was fairly involved they referred me to Dr. Howard, an orthopedic specialist. One look at my x-rays and he wanted to do surgery immediately on me. He said that the Cancer that had gone to my bones had engulfed over 50% of my right femur and I was in danger of it breaking right on the spot. As if the wind hadn’t been taken out of my sails already, this more recent news just about did it. I had surgery within 5 days to insert a titanium rod down the middle of my bone and to keep it in place they inserted 3 metal screws in the side on my leg at various places. Here I was a vibrant, relatively young woman, who know was battling two completely different types of Cancers and was relegated to a walker just to be able to get around. It was at this point I felt as if I had lost all sense of independence as I even had to have help getting dressed.
However, if you don’t grasp my story by now, perhaps you never will. I again refused to cede my life to Cancer. The uninvited guest would not be allowed to define me and I knew that my God would surround me with love and comfort. To show you how he did that just look at the determination he gave me. I had the surgery on Tuesday and was sent home Thursday. Friday and Saturday I was barely able to move around with the walker. Yet, I continued to pray and have others pray for me. Saturday, I confidently told my husband I would be in church on Sunday some five days out from this major surgery. He laughed and told me pigs would fly over our front yard before he could see that happen. It wasn’t that he failed to believe, he just knew how much physical trauma the surgery had placed on me.
Well I guess Randy missed the pigs when they flew over our house because I was in church Sunday. I know you may think it is corny but there is a prevailing theme that this web site carries and that is “You can be in control of you Outlook—because God is in control of your Outcome. You do not have to face Cancer alone and in fear.
Once I was able to heal from the leg surgery it was off to Dr. Janice for daily radiation treatments on my right leg for two weeks. This was a lower dose of radiation so I was basically able to tolerate it well, except for chronic fatigue. However, there was no damage to my skin or heartburn so all in all it was a rather uneventful treatment program.
Tuesday October 12th was D day. This was the day I would have what I believed to be my last surgery to remove the Cancer in my right breast. I checked in at noon at the surgery center but things quickly got backed up. As those with Cancer often tell me it is the waiting that is the hardest. You emotionally get geared up for something and then you have to wait. It is the silence during these waits that is deafening. By 4:30pm I was moved into surgery and after two and a half hours I was moved to recovery. Since I had nothing to eat or drink for twenty four hours, the pain medicine made me ill and this delayed me getting back up to the room. I didn’t make it up to my room until 9pm
Wednesday October 13th less than a day out from surgery, my husband came by for a visit. My oldest son had taken the morning shift and Randy was taking the afternoon shift so he could save as much of his leave time as possible for when we really need it. He asked me if I had been able to get up out of bed. I said just a bit, I told him I actually walked the entire perimeter of the hospital hallways twice during the morning. I think his jaw just about dropped off his face. Once again, with so many people praying for me, with God by my side, and with determination, I was able to do things that I never before thought possible.
The doctors told me that I could go home by Friday or Saturday and I told them on Wednesday night that I was prayed up, empowered, and was going to be going home by Thursday less then two days after major surgery. Some people thought I was crazy. However, Thursday came and my physicians said I had been making remarkable progress so I could indeed go home and be in church Sunday, which I was.
Monday,
October the 18th, I saw my surgeons for a follow-up visit and both said I was
doing fine. Because of all the trauma to the area they operated on they had to
install two drains which I had to leave the hospital with. These were really a
pain as they had to be emptied twice per day and the amount of fluid recorded.
Today, I was told that one could be taken out but I was unprepared for what was
next. Apparently they do not give you anything for the pain and thus they just
removed it quickly. I thought my insides were going to come out. I was told the
other drain would come out on Friday the 22nd. I must admit I was not actually
looking forward to the experience.
Friday, October 22nd came and because I still had a lot of drainage they decided
not to take the remaining drain out. I was actually relieved since I was going
for my first two hour IV treatment today. I arrived a little early and found
that the treatments had to be given in the chemotherapy ward. We were originally
told by one of the doctors that what I would be taking was not chemotherapy
however, everyone at the center seemed to think it was. Stepping into the center
instantly brought back memories from 1996. The smells, people without hair, the
discussions, all of it now seemed like it was yesterday. I must have looked like
a novice because as my husband and I walked in everyone looked at us. I
remembered what it was like when I was having chemo in 1996 and new people came
in so it is little wonder why we were receiving so many stares.
I settled in to one of the 16 chemo chairs and then after a brief wait the nurse
came over and visited with me. She sat up an IV and then later a drug called
Aredia. This was one of the two drugs I was going to receive for the Cancer that
had gone to my bone. It was not used to treat the Cancer, rather to make my
bones strong and to help promote some new growth to repair all the damage I had
experienced in my right femur.
They gave me a sheet of all the complications the drug may cause and I sat back
once again wondering. However, I tolerated the drug well and after two hours we
were done and on our way. I had the treatment done on Friday so if there were
any complications I could have the weekend to rest up. Fortunately, it appears I
will be able to tolerate this well as I didn't seem to have any effects on
Friday night. That is good as this treatment must be given for the rest of my
life every month. In the near future, I will have the other bone drug called
Quadramet, which must be administered by a certified nuclear medical technician.
I had hoped to see the oncologist this visit but it was not meant to be. I was
somewhat anxious because the lab reports we received about the Cancer surgery in
my right breast turned out to be positive for Cancer in my lymph nodes. This
means that the Cancer is in my blood stream and increases the risk of further
spread to other organs. However, the assistant to the oncologist advised us that
the doctor had seen the lab reports and was not going to change treatments. The
waiting and second guessing are always hard when dealing with the unknown but as
I have done throughout this journey, I have turned it over to God.
Boy was I wrong about the lack of any side effects. I got up Saturday morning
weak and aching all over. It took all I could muster to get out of bed and into
a chair. I either laid in bed or sat in a chair but never had any juice. Then
later in the day, my bones started to ache and that ache even went to my teeth.
However, the good news was there was no nausea or sickness so I am so thankful
for that. Anytime you are put on such powerful medicines you need time to adjust
so I am hoping that my adjustment period will be on my next treatment.
Monday the 25th, I went back for yet one more appointment to get the drain
removed. I am hoping after that, I can get a reprieve from seeing so many
doctors. Unfortunately, I was still having too much fluid build up so it was go
home and wait again and come back Friday the 29th. By Friday I will have had my
fill of this drain having carried it with me for 17 days. I waited all week as
instructed and went to have it removed at 9am. Our doctor had always been prompt
and we needed to be out of there pretty quick since we were traveling to Austin,
Texas for a funeral. We knew it was going to be a three hour drive and the
funeral started at 1pm. Randy had a sixty two year old friend who had started
having headaches about five months ago and it turned out to be brain cancer. He
died earlier this week so we decided to attend the funeral at the last minute.
As luck would have it, our surgeon was making rounds and was late by
approximately 20 minutes. We had to scramble, arriving at the funeral
approximately two minutes before it started and had to stand out in the back.
Fortunately, someone had placed a chair in the rear foyer so I was able to sit
as I get exhausted easy these days. The funeral was packed and emotional as
James had so many friends. It was a very nice send off to an exceptionally warm
man.
On the way out of town we visited our middle aged son Lenny who had just moved
to Austin and then it was right back in the car for the long trip home. We
arrived near 9pm.
Having done little this summer except medical procedures, I welcomed the news
that Randy was taking me with him to a conference in Los Angeles Friday November
12th through Thursday November 18th. This was my first trip out of town since my
relapse with Cancer and I was really looking forward to it. It was great to see
old friends from prior conventions and we even had some quality time for just
the two of us.
We had an opportunity to go out to Malibu to sit by the ocean, have lunch, and watch the waves come in. They also closed down Universal Studios one night just for those persons attending the conference and that was a marvelous time as well. However, one of the greatest moments came when Randy surprised me by taking me to Saddleback Church on Sunday morning. Saddleback is the home church of Pastor Rick Warren who authored the 40 Days of Purpose Program. Saddleback is located one hour south of LA and it is an amazing church. Everyone was so friendly and to top it off we actually got to hear Pastor Warren preach which was an added benefit. Saddleback had just concluded a new program called 40 Days of Community. They, along with 700 other churches, were perfecting this program that was to be released in January 2005. This was a follow-up on the 40 days program which by now had been given in over 25,000 churches across the globe.
Christmas is
undoubtedly my all time favorite part of the year. I have always cherished it
but this year's Christmas brings new significance, as I am uncertain how many
more I will have with my family. Randy and I were discussing what a mixed
bag my summer has been. In reviewing things since July 9th, I have had over 32
different doctor or specialist visits, 7 major medical tests, 4 medical/surgical
procedures of which 3 had to be done in the hospital, 13 radiation treatments,
and the two monthly two hour IV treatment and yet, I am still able to smile
because God's grace stays with me.
January 4th will arrive and I will have my first Radioactive treatment of
Quadramet. I am told it sometimes carries chemo like side effects and drops your
blood count down significantly so I am not really looking forward to it. During
that same week I have CAT Scans and Bone Scans and then Friday the 7th Randy and
I meet with the Oncologist to see if any of these treatments have done any good
and if my Cancer has held in check or spread.
Having come back from our fantastic California trip on the 18th, I found my excitement taking a back seat to new found pains in the lower portion of my right leg. It is funny how you can be on such a high one minute and then this Cancer scare takes you right back down to the bottom. The obvious immediate fear was that somehow the Cancer had returned and was now in the lower portion of my right leg. However, as is customary, I brushed back the fear and turned it over to God. I trust completely by now that he is in control of whatever situation I am facing with this.
Randy and I met with the orthopedic surgeon who operated on my right femur on Monday November 22nd and he performed a complete examination including x-rays. His professional opinion was that I had over extended myself with so much walking in LA. I have to remember that my head tells me I can do much more than my body sometimes allows and it has a funny way of showing me when I have exceeded that threshold.
The great news of the day was that Dr. Howard saw evidence of renewed bone growth in the leg that had experienced so much destruction due to the Cancer. That means that the medicines appear to be working and that there is less chance of a fracture due to my own bone growing properly again. Praise God!
Friday December 3rd I had my second, two hour, Aredia treatment. Because of over the counter medicines I took before the treatment, I was able to tolerate it better this time. The only side effect was fatigue and some bone pain to my joints and jaw. Things rocked along relatively normal with general fatigue and joint pain but I felt good enough to participate in our church choir's Christmas program on Sunday the 12th.
Then, as is so often the case, something comes out of right field and knocks you off balance. Monday December 13th I noticed my right leg, the one that was operated on, had swollen tremendously. Obviously, this caused us great concern and we tried to get in to see the physicians as soon as possible. There has been speculation that it could be everything from a blood clot to swelling caused by my damaged lymph system. I am still hoping for a treatment free Christmas but then again with this latest development you never know. The biggest problem we face is that with 5 specialists, there is not always agreement on whose responsibility it is to treat Lyn when something like this comes up. Eventually, we were able to get one of the surgeons to see her on the 15th of December and he immediately sent her to the hospital for further tests. As a result, they ruled out a blood clot and now think it may be lymph edema. After being bounced between the oncologist office and the specialist we were then redirected to the radiologist/oncologist because we found out radiation often enhances this problem when dealing with Cancer. Lyn had a visit scheduled for Wednesday, December 22nd but it snowed and we had to cancel it due to icy streets.
We had a wonderful Christmas with all the kids in, as well as Lyn's 92 year old Mom from Bethesda, Maryland. Since we have given up on grandkids anytime in the near future we had to settle for all the grand dogs at our house. William had a black Lab pup, Lenny a shitz zu, and Christopher has ours here. Needless to say it was a literal zoo here at the house with dogs running around everywhere.
We finally got in to see the radiation oncologist Tuesday December the 28th and she looked at the swelling and said she was not sure it was lymph edema. As a result, she ordered more in-depth testing for Monday January 3rd, 2005. This is the same day I was already scheduled for a series of CAT Scans for all the soft tissue areas. Tuesday the 4th I am also scheduled to receive the first radioactive injection of Quadramet, a bone enhancing drug. They will also do a Bone Scan at the same time. Then Friday the 7th, we will all meet up with the oncologist for our first quarterly evaluation. This will allow us to go over all the scans and to see if the treatment I have been on has been able to hold the Cancer at bay.
The next step in this incredible journey is to have treatments for my bones to make them healthier and keep them from breaking. I will receive a radioactive injection (Quadramet) once every six months and a monthly two hour IV treatment (Aredia) from now on. However, these treatments along with the oral drug (Fermara) I am currently on have relatively few side effects, with the exception of the Quadramet, so I should be able to live a relatively normal life or as normal as it can be.
This week was already full of stress as we knew that it would be filled with a great many tests as well as my first radioactive treatment of Quadramet. However, we had no idea that Monday morning January 4th, the stress would start so early. On Sunday, the night before, I drank the banana flavored chalky drink they give you for CAT Scans. It seemed like it was a quart. Then Monday morning I drank another one and drove over to the Radiology Clinic to have 3 separate CAT Scans done. Upon arrival, the staff curtly told me that their machine was broken. No one had attempted to contact me before the drive over and their attitude was somewhat indifferent. They told me to go back home and drink some more chalk and come back another day. I asked nicely if they could get me in somewhere else and they showed disinterest. Finally, out of character, I made a pest of myself and forced them to call a location nearer our home. Imagine their shock when the other branch told them to send me right over. Monday morning started off with rude, indifferent, and uncaring people who have no idea what it is like to go through this. Sometimes those in the medical profession can make the treatment of the patient worse than the disease itself.
Shortly after this occurred, I received another call from the hospital telling me the Quadramet treatment scheduled for Tuesday had to be cancelled. This test was ordered over a month ago and the isotope used in it was ordered two weeks ago. When I asked them about the Bone Scan that was also ordered, they found that the physician hadn't even called in the order. Consequently, I wasn't even on the schedule to have the test done. On the surface, this doesn't seem like a big deal but when something gets postponed or rescheduled it results in a domino effect when dealing with so many doctors. All the tests were predicated on having them finished for Friday the 7th so the Oncologist could consult with us about my progress. We knew that any postponement might mean I would have to cancel the Friday consult, and with that would come more stressful waiting.
After talking with various people at the hospital and doctor's office, I called Randy and he came right home. After a marathon morning of getting the runaround and being told conflicting stories I had just been through enough. Both of us got on the phone and literally spent over 2 hours talking to nurses, department heads, and staff. While we won't bore you with the details, suffice it to say that we were given misinformation and it didn't seem like the right hand knew what the left was doing.
Finally, we talked to the head of nuclear medicine who calmed our concerns by having the Quadramet treatment scheduled for Thursday the 6th in conjunction with a Bone Scan. The department head promised the results by the next morning so we could keep the appointment. At 1pm on Thursday, I was given a radio active injection that about 65% of goes right into the bone. They then excused me and told us to come back at 4:30pm and they would do the Bone Scan. The procedure went like clockwork and while we weren't sure what side effects there would be, I tolerated it rather well through early evening.
Near bedtime the effects of the drug began to hit me and it was like the Aredia I had been given previously. There was significant bone pain, especially in my jaw, nausea, and extreme fatigue. I would have tolerated this better but had picked up a cold during the week so all in all it kicked me rather hard. I didn't sleep much during the night nor did Randy and we had a lot of soul searching conversation about what we would do and how we would act if the results of my tests were negative. However, we continued to have faith that things would work out according to his plan.
Friday January 7th at 1pm, Randy and I visited the oncologist and it was a great meeting. She had heard about our previous problems earlier in the week and did her best to help reassure us and to give us guidance on how to avoid something like that in the future. Then came the great news we had so longed to hear. There had been no new progression of the Cancer in my body. Praise God! Things had stabilized, there was no new growth in my pelvic area as they had suspected, and my tumor markers dropped from over 100 to 51 and then later down to 45. All in all, it was as good a report as I could get. However, since I felt so lousy from all the treatments and cold it was hard to get excited. I got a month reprieve from having the next 2 hour bone treatment since I was a good girl, so I definitely perked up at that news.
Randy picked up prescriptions for me and put me to bed around 6pm so I could sleep off some of this stress. I know I need it.
Friday, February 4, 2005 was my third two-hour Aredia IV treatment for the bone. I was fortunate in that last month, because of the Quadramet injection and how good I was doing, I didn't have to do Aredia. With each treatment and advanced planning I have learned how to handle things a little better. I have found several over the counter medications which help to minimize the bone pain and terrible indigestion and I walk out feeling in relatively good spirits. In fact, after today's treatment I felt good enough to ask Randy to take me out for Italian food. I think he was a little shocked, to say the least. Even though I have been doing better with each treatment, we know that you can never be certain how my body will react. However, it was fine and we had a great evening out just the two of us.
On Saturday morning, I woke up expecting to feel the strong bone pain I had with previous treatments but it just wasn't there. Naturally, that constant nagging bone pain I have had since coming down with Bone Mets is always there but it is more like a chronic condition that one just puts up with. Randy, Christopher, and I all went out and made a day of running around and there was virtually no fallout from the treatment. Then around 8pm, as luck would have it, the treatment finally hit me. I had all the usual suspects, bone pain, extreme fatigue, etc. so I was too weak to do anything further and just went to bed. When I reach this point, there is no use fighting it and bed rest is the best thing. As it was important to us to be able to go to Sunday School and Church on Sunday, this seemed the right thing to do.
Although still somewhat weak, we got up on Sunday to honor the Lord. He has gotten us through this much so far. I will just not let fatigue cause us to fail to honor him on his day. If you haven't figured that much out about us this far, then we have failed to get the message across.
Monday, February 7th Randy had a conference in San Antonio, Texas and I felt good enough to go with him. The conference started on Tuesday and ended Thursday so it gave me plenty of time to spend on the Riverwalk during the day and great places to eat with Randy at night. On Friday, we headed out for Austin, Texas and we stayed overnight getting a chance to visit our middle aged son Lenny on Saturday.
After a great visit, Randy took me to Salado, Texas to a beautiful bed and breakfast to celebrate our 23rd wedding anniversary. He also took me to a very romantic restaurant in the city for our anniversary and can you believe that after all these years we gave each other the same anniversary gift again. This has happened at various points of our marriage but had not in some years so it was nice to know the spark was still there.
If there is any frustration at this point, it is in not being able to reduce the significant swelling in my right leg. For well over a month I have had my right leg swell up, sometimes almost twice its normal size. The swelling comes and goes but never fully goes away. Because of it I have difficulty in walking, standing for long periods, and being able to do a number of things I would normally do. The doctor has sent me to a specialized Lymph edema Clinic and I go for treatments one hour each, three times per week for a total of six weeks. They have used compression stockings, wraps, and massage but none have been totally effective. They estimate that due to one or more factors my lymph system has been damaged and it will not transport fluids like a normal person. Thus, when I have any activity fluid increases, and swelling occurs because it has no where to go. The stockings help push the fluid up to other areas of my body and the massage helps to move the fluid to lymph areas that are not damaged. It is really more of a hassle than anything else and I think to myself, "Oh, just to be normal again."
As I mentioned, my oncologist was concerned about all the swelling in my right leg so she sent me to the Lymph edema clinic. I have been going for treatment three times per week for an hour each time. Finally, at about the 6th week they noted some real progress. The swelling in my right leg had gone down to almost nothing. This was pretty amazing considering that I went with Randy to the new car show this past weekend and did a ton of walking, all on concrete.
Randy also surprised me with two tickets to the American Airlines Center in Dallas to hear Joel Osteen preach. He is from a very large church in Houston and they have over 26,000 members. Someone at the program said they thought their current attendance was more like 33,000. Anyway, they are big enough they purchased an old pro basketball arena to hold their services in. The program rocked and it lasted over two and a half hours so I went home super charged on faith.
Point of Grace is also one of my favorite female gospel groups and I found out Randy had surprised me with tickets to see them on April 15th. While I know it is not Randy's favorite group he figured the music would help him forget that this was also income tax day. He and I both really love music and he has been great supporting my habit in this area.
From this point on, I will continue with my daily hormonal pill, Femara, and then a once per month 2 hour IV treatment of Aredia. Then, if the physicians think I need it, I will have a radio active isotope treatment of Quadramet which is given once every 6 months. I will stay on the Aredia for the rest of my life and on this first hormonal until the Cancer gets wise and mutates off of it. Once that happens, I go on to the next hormonal treatment unless the Cancer becomes too aggressive and goes to an area of soft tissue. If that happens, I will probably make the jump to chemo but don't even want to think about that at this point.
Unfortunately, I am not out of the woods on all this stuff with the leg swelling and it will be with me from now on. However, if I treat it aggressively, it may not be as bad. I have learned to be proactive in taking over the counter medications to control pain and nausea prior to the Aredia/Zometa treatment and for the most part the side effects, other than fatigue, are controllable. I have felt good enough after treatment that I have even been able to go out to dinner on occasion.
I have been able to continue with my choir activities at church and have even ventured out in faith trying out for the special ladies ensemble and much to my amazement, I was selected for the group. I love to sing and it really allows me to praise God for what he has done and continues to do in our lives.
If you or someone you know is facing Cancer it is serious business. It can weave its way into your life and wreak emotional and physical turmoil. I am not naïve enough to try and begin to tell you that it has been a walk in the park, because it hasn’t been. There have been extremely rough times physically. For example, four surgeries in the space of 3 months would be tough on anyone. Has it been tough emotionally, without a doubt? Being told you have an incurable disease isn’t an easy thing to hear. Sometimes people even die with this disease. Yet, part of the thing about Cancer is the journey one takes. You can take that journey alone, in fear, and without much hope of an eternal future or you can take it confident in the fact that our lives here on earth are temporary and that through God’s grace he will see us through to a better life.
Am I better off for having Christ in my life during this most difficult struggle? The answer is a resounding yes! Christ can still perform miracles and he may do so in my life or in yours. Yet, that can’t be the only prayer we ask. We must submit ourselves in humility and ask God to help us use our own personal struggle for his greater will and to help others in distress. Whatever happens in my battle with Cancer I am at peace that it will be according to the Master’s will? Do you have that peace today, if not we have placed information elsewhere on this site on how you too can find peace even in the midst of a difficult struggle with Cancer.
You can find out the latest in my bout with Cancer by clicking on the link at the top of the regular web page titled "Lyn's Recent Journey". Well that's all for now until our next round of quarterly tests and results so for now keep up the prayers----they work!