Hi...My name is Sheri and I was diagnosed with a rare cancer (Leiomyosarcoma) in January of 2002. I decided to chronicle my fight...It's been a rough year for sure, but I will keep fighting as long as God allows me.
Here is a picture of me a few months before I was diagnosed...notice I had on a Relay for Life shirt. I have been involved with the American Cancer Society's Relay for Life for the last 4 years.
It all started in October...I was having pains in my legs and feeling
exhausted a lot of the time. I also felt an enlargement in my uterus. I would
have sworn I was pregnant had I not had my tubes tied in 1988. I went to my
doctor and he told me my uterus was the size of one that was 4 to 5 months
pregnant. He sent me for an ultrasound and after the results came back he told
me I had a large fibroid that needed to come out. I had my hysterectomy on
December 18, 2001.
This is a picture of me recovering and wishing I was home.
I had my follow up appointment on January 3, 2002. I was told then that my fibroid tumor was actually Leiomyosarcoma. My doctor assured me I didn't need to worry because they got it all, but I needed to see the oncologist just to make sure he didn't want to do chemo or radiation. In the mean time, My husband researched my cancer. What we learned was very scary. There is no cure for this type of cancer. Statistics were terrible, so we preferred to not look at the statistics. I urge everyone who is fighting cancer to stay away from the statistics! Let me explain... say you have a cancer that kills 99 people out of 100... if you are that 1 in 100 that manages to live, what does it matter to you what the statistics are??? It's very important to stay positive about everything!
By the way...this type of cancer is extremely rare. It only affects 4 people out of every million diagnosed with cancer. It's so rare that most doctors have never treated it...that is why it is so important to see a specialist.
I had ct scans in January and they showed a spot on my right lung and a very small spot on my left lung. For some reason, I really was not worried in the least. I must have been living in some dream world not really realizing what was going on. I did NOT think it was cancer in my lungs. My lung surgeon sent a sample to pathology while I was on the operating table so it was confirmed that it was metastases to my lungs. I then became a stage 4 cancer patient. He decided to remove the middle lobe of my right lung to ensure that he got clear margins. This surgery was 2-15-02.
Here is a pic of me getting ready to
go to surgery...you can tell they have already given me the Versed...something I
think every person needs to have at least once. Hah!!
I think the most difficult memory I have is waking up to see my 13 year old
son looking at me with tears in his eyes. He knew my cancer had spread to my
lungs as he was there when my surgeon told my husband. I woke up to everyone all
teary eyed and I was like "I'm FINE! Surgery is over and I did just fine!" Of
course, I thought they were all upset just because I had to go through that
awful surgery in the first place. My husband told me that it was cancer that had
spread to my lungs and I was just really in shock. I whispered... "Wow". I just
really never believed that it was.
Here is a picture of me recovering from surgery.
And here is a picture taken 3 days after surgery. Still smiling. hah!
Recovery was slower than I would have liked, but I was told I did extremely well.
I started chemo (Doxil) March 18th. I had a rough time with the infusion. My body reacted and I threw up a few times. They had to quit the infusion several times to give me things to counteract my reactions...ugh. Once it was over though, I did fine. Doxil was fairly easy for me to tolerate. Fatigue seemed to be the biggest side effect.
I did manage a trip back home over the Easter holiday. It was nice to visit with many relatives. We took lots and lots of pictures. Of course, that felt sort of funny to me cuz I kept thinking everyone wanted pictures cuz they thought I was going to die. But really...pictures are a good thing ANYTIME. We never know if we'll be here tomorrow.
Here are a couple of pictures from this time...as you can see I was doing pretty good considering I had just had major surgery 6 weeks earlier. Still smiling...
I had another chemo treatment in April. I was on a treatment plan of once every 28 days. I also started having chest pains in April. It hurt to breathe. Never going through chemo before, I assumed it was something to do with the chemo attacking the tumors.I had ct scans May 6th. Bad news...all tumors were growing and my lung was 60-70% collapsed.
Here is a pic of Denny and me in May...
I was determined to make it to our Relay for Life...and since I wasn't very symptomatic from the collapsed lung, they didn't feel it was urgent for me to get the chest tube. I was given strict orders not to venture to far from the hospital though in case it became an emergency... I made it to the Relay... Yeah!!! Here is a pic of me and my very good friend, Valerie. Our team placed First for most money raised by a team that was not affiliated with a corporation, school, or church. In other words, we were just a group of friends. LOL!
May 14th I started a new chemo treatment...Gemzar. This would be once a week for 3 weeks and then one week off before repeating the cycle. After my chemo infusion I was admitted to the hospital to get a chest tube inserted to try to get that lung re-inflated. My surgeon was very pleasantly surprised when it popped back up. I still had about a 5-10% pneumo, but that's much better than 60-70%!
May 16th, I had surgery to get a Bardport implant inserted in my chest. That was one painful surgery as it healed! A port is used to make getting chemo treatments easier. They just stick the port with a needle instead of trying to find a vein. Very good idea when you are getting weekly infusions.
Here is a picture of the port in my chest so you can understand it a little better. The port itself is under the circle...the bigger incision is where they cut to put the port in, and the small incision is where the line of the port is connected to my artery.
I was discharged from the hospital on May 20th...I went straight from the hospital to my oncologist's office where I got my 2nd infusion of Gemzar.
10 days later we went to a Benny Hinn Crusade. I had such a wonderful time. It wasn't Benny Hinn that excited me, but just standing in line and visiting with all the Christians and all the prayers that were shared. What a fabulous experience! I met so many wonderful people and I hope I have the opportunity to go back this year. The presence of God is so powerful when you have a place filled with 30,000 (or maybe it was close to 300,000?) believers. There were a LOT of people. LOL!
This is a picture of me and my husband and his sister Rena and her husband Jeff. They went with us to the Benny Hinn crusade. They have helped me tremendously with their faith... I tell them all the time that I'm living off their faith. When I begin to have doubts I just remember how strong their faith is and it brings mine back on track.
I had ct scans in June because I started coughing up blood. The ct showed that the tumors were still growing. My oncologist decided we should add Taxotere to the Gemzar. I had my first infusion of that on June 11th. It really did a number on me. I felt like I was a walking dead person.
On June 19th I was hospitized again...this time it was for low white blood cell counts and I was running a temperature of 103. It was weird because I didn't feel like I had a fever. I just felt bad...very run down.
June 20th we discovered my left lung had collapsed. I had another chest tube inserted. I was discharged on June 24th. My hair started falling out on June 26th. I got it cut short to make it easier, but 2 days later I just had my husband shave my head. Wish we would have taken some pictures of that, but I really wasn't in the mood. LOL!
Here is a pic after I started losing my hair, but before I shaved it all off...I hated it. It was way too short for me. I feel like short hair makes my face look fatter, of course its nothing like what steroids do to your face when you have no hair. LOL!
I was not feeling well. I had severe shortness of breath, but I had a very close friend from high school coming over so we could go to our 20 year class reunion together. Lori was flying to me in case I was too sick to travel. Our plans were to then drive to Illinois to the reunion and then back (5 hour drive each way). If I was too sick then she was just planning on visiting with me and helping out. What a sweetheart she is! But I was very determined...anyone that knows me knows just how stubborn I am. LOL! And I did NOT want Lori missing that reunion! We made it to the reunion...here are a few pictures.
And brace yourself... one of me with no hair. There are not many pictures of me without my scarf on because I was very strict about "NO pictures of my bald head!"...however Dad snuck this one without me realizing it. Now that I have a little bit of hair again I guess I can show it. :) Actually, this is how I ran around the house 98% of the time. It was much more comfortable. I have 3 wigs and have only worn them maybe 4 or 5 times. I just feel much more comfortable in a scarf.
We did it! We made it to the reunion! We came home on Sunday July 21st and on the 22nd I had a doctors appointment. My blood counts were low and I was also sent for a chest xray due to my shortness of breath. My lung had collapsed again! Back to the hospital for a chest tube...ok this is getting very old by this time. I was in tears.
Here is a pic of me in the hospital this trip...and notice... I'm STILL
Of course, this was AFTER the tears had been dried.
Now, you have to remember that it's not ALL bad being in the hospital...Check out the nifty gift basket I got my from aunt, uncle, cousins and their families...wowza! Did I ever have fun! I was up till 2:00 am that night playing the electronic Yahtze they got me!
My lung was still leaking air, and I had been in the hospital almost 2 weeks when my surgeon decided to try a procedure where he put some kind of medicine or chemical in by chest tube and then clamped the tube to keep it in my chest cavity. This was done to scar the lung (against my wishes, but he talked me into it) so that it would stay inflated...the theory was that the scar tissue would hold the lung in place and keep it inflated.
That was the worst procedure I've ever gone through...and I would die before going through it again. As soon as that chemical got in my body I could not breathe... I was gasping for each breath. I was scared out of my mind. And I was very confused as to WHY I had to endure this. I couldn't talk...I couldn't cry...I couldn't do anything. I just kept thinking "WHY?" and "Where is Jesus? Why isn't He helping me through this???" I can't even begin to tell you just how confused I was at this time. I've never wondered "why me?" about the cancer, but this procedure scared me and made me question my faith... and questioning my faith upset me even more. I get so mad at myself when I do that. But I guess I'm only human and that will happen from time to time. I was panicked. I really thought I was dying...in my mind it was the end.
Thank God Denny was with me...he remained calm through all of this and I'm sure that helped me a bunch. This went on for 2 hours when they finally unclamped my chest tube. The relief was almost immediate. However I was an emotional wreck. I couldn't talk about it without crying. I still get choked up to this day thinking about it. It was awful! My surgeon felt so bad that he came back to the hospital at 11:00 pm that night to apologize. He said he had never seen anyone have a reaction like that. He's a very caring doctor and it shows in the way he treats his patients.
X-rays showed that my lung was still leaking air whenever they clamped the tube, but my surgeon decided to go ahead and pull the chest tube and release me from the hospital because I had been in there for so long. I was against this because I was afraid I would have to get another chest tube...and let me just tell you...it HURTS! They cut you clear through to your chest cavity without anesthesia. I don't know why...they explained it, but I still don't understand it enough to explain it to anyone. They do give you stuff to numb the area, but it still hurts bad.
So I was released from the hospital on August 5th.
Here is a pic of me after being released... the first thing I did when I got home was go in and see my birds... I missed my family and pets so much!!
I was readmitted on August 8th...you guessed it, my lung had collapsed again! This time my doctor was not on duty and his partner did the chest tube and let me just tell you...I would die before letting this man touch me again. It hurt soooo bad. I cried all night. When I finally got in my room, the nurse was fantastic and called the doctor to insist that I get a PCA pump for the pain. That helped...but I was still in a lot of pain and once again an emotional wreck. I was much better the next day, but when I saw my doctor again, I told him point blank that his partner stunk and that he better not even think of retiring because I would come drag his butt to the hospital if I needed him. LOL!
After another week of this and the lung still leaking air, my lung surgeon finally decided lung surgery was the only way to fix whatever was going on. I had surgery on 8-16-02. Six months after my first lung surgery. Now I have a beautiful scar on the left side of my back to match the one on the right. I think I would scare the neighbors if I ever decided to wear a swimsuit top outside. LOL!
Here are a few pics from that lovely experience...
Uhhhhh Did you notice anything??? I'm STILL smiling! LOL! I'm just rubbing it in to the dragon and letting it know it will NOT get the best of me. Cancer didn't know who it was dealing with when it decided to mess with me! LOL!
I was discharged from the hospital on 8/22/02. Hallelujah!!!
My son had been begging for a big dog for a long time...we have a shih-tsu, Max, but he is 13 years old and Coady was wanting a dog he could wrestle with. So when I got out of the hospital I started helping him talk Denny into it...so the day after I got out of the hospital Coady and Denny went and picked this little guy up. His name is Chance.
And well, Chance isn't so little anymore. LOL! Here is a more recent picture of Chance... who is now at approximately 75 lbs.
My ct scans showed some suspicious spots on my right lung and one spot on my left lung. My surgeon removed 6 tumors during my lung surgery, but must have missed this one or it could have come after the surgery.
Here is a picture of us in September...leaving for Bible Study.
I started chemo (Gemzar/Taxotere) back up on 9/16.
Here is a pic of my parents. They've been wonderful...staying with us most weeks to help with cooking, cleaning, laundry, ironing, errands... you name it.
Here is a pic of me in October... notice the hair is starting to grow back.
I had ct scans of my chest again 11/18 to check the progress of the chemo. Bad news AGAIN! I had significant tumor growth...the tumor in my left lung was now taking up 40% of my left lung. It went from just a little spot to taking up 40% of my lung in just 8 short weeks! I was heartbroken...I went fully expecting to hear that I was improving. Remember, I have never doubted that I was going to beat this thing...it's not my nature to be beaten (just ask my husband LOL!) so this was quite a shock for me. But I am still believing in my miracle.
I went to church the next night and one of the ladies at church came up to me and asked if she could speak with me. I went out with her to talk and she told me this..."As you walked by my truck coming in, God told me to come and get you and give you this word. First, let me explain something to you so I know you understand what I am saying. You know how when you trim tree branches and you might have a pile of branches you just cut off and you know they are dead because you just cut them off yourself." I said "yeah" and she says..."well, you might walk past that pile of branches a few days later and see new sprigs or leaves budding and you are thinking what's wrong with those branches, don't they KNOW they are dead?" Yep... I've seen it happen, I knew exactly what she was getting at. And then she says, "Well, God wanted me to tell you that's the way it is with your cancer...it's dead, it just doesn't know it yet." Oh my gosh...I can't even tell you what kind of emotion that went through my body. It gave me so much hope. This lady didn't know me...she didn't know my story. She knew I had cancer, but she had no idea I had just received bad news the day before. God works in mysterious ways!
I had a doctor's appointment the next day to decide where to go from there. I think my doctor must have spent almost 2 hours with us. He kept telling us different stories of miracles and then he would say something like "I don't even know why I just told you that." I had tears in my eyes and I know he thought I was upset because I was getting worse...but the truth was I felt so relieved after the word I had received from God the night before...and then he kept talking about miracles, I just knew in my heart that my cure was coming soon. I was just so happy that he was on my team.
Here is a picture taken over the Thanksgiving holiday. We were able to make it home for the holiday. My son, Josh is in front, My uncle Chuck is next to me, my aunt Brenda is in the back, and my aunt Sue is on the couch talking to my niece, Mikaela.
We decided to try Thalidomide and Temodar. I take 200 mg of Thalidomide daily and I take 200 mg of Temodar for 5 days every 28 days. That first week on the chemo was pretty bad. Not because of the chemo, that was fine...but my symptoms were just very bad at this point. It was the first week of December and I was beginning to think I might not make it till Christmas. My spirits were very low...I was having a tough time breathing and I was coughing non-stop. By this time I was coughing up a LOT of blood. Every time I coughed I was bringing up blood. It was pretty disgusting. It was very bad one night. I spent the evening in the bathroom coughing blood up and spitting it into the toilet. My poor husband... I've really put him through more than anyone should be, but he is one amazing guy... he is my rock. I was blessed the day I met him and I have been blessed daily since.
Here are a couple of pictures taken from Christmas time.
It's weird how fast things can turn around...The first week of December and I'm praying I can hang on till Christmas...and now 7 weeks later and I'm feeling better than I have in over a year. Praise God!! My coughing has been reduced dramatically and I rarely cough up blood now, which had been a daily occurance 7 weeks earlier.
I spoke with my oncologist regarding a chest x-ray I had on Tuesday. My latest x-ray shows that there are no new tumors. My tumor in my left lung is still there, but it has not grown. Previously, it showed up as a solid tumor. Now it looks as if it has liquid in the center. Possibly necrosis (tumor dying), but the doc said the ct scans will tell us more. He said we don't need to rush the scans though...we can wait a month or two. That's fine with me. I can pretty much tell by my symptoms if we need to change that and make it sooner.
I don't know what the future holds for me. I only know that I'm going to take every day that I have with my family and enjoy it...I'm going to listen when my kids want to talk and I'm going to pay attention to their every smile. I pray ALOT. I believe I'm going to get my miracle...but I sometimes worry "what if I'm wrong?"
Don't get me wrong though... I'm not scared to die. Not at all. I know that where I'm going is a great place, a place where there will be no more tears and no more suffering. I just worry about my loved ones I would leave behind. I get scared that they will blame God for all of this, and I just pray every day that that doesn't happen. I figure if I don't make it, maybe its because God is releasing me from my suffering. I don't think we will ever fully understand the big picture...but it will all make sense one day.
For those of you that aren't Christians...I'm sorry if this is confusing for you. I wish there were something I could do or say to make you understand. I used to be confused...I used to wonder if there really was a God. And then I was diagnosed. I thank God every day for being here for me. I get VERY emotional when talking about it. I've had some very in depth conversations with my son. I now KNOW that God is real. The first week after my diagnosis, I lost it. I cried and cried and cried some more. And finally I fell to my knees and cried to God and begged Him to take the burden from me. I told Him it was just too much...I couldn't do this by myself. I KNEW I couldn't. After I did that, somehow I managed to let it go. The next day I felt like the world had been lifted off my shoulders. For the most part, I've done real good most days. I'm not going to say that I never have a bad day though...some days I guess God thinks I can handle more than other days, and He must be right since I'm still here handling them. LOL!
If you find yourself having a hard time...turn it over to God. I promise you He will help you out. I think sometimes that when we pray, instead of praying for help with a particular problem we pray for the outcome that we want... and I'm sorry, but that's not going to work. God answers our prayers, but sometimes its not the answer we are looking for so we think he isn't answering, but He is.
So please...I'm begging all of you, no matter what happens...do NOT give up on your faith. Make it grow. Life is so much easier when you can lean on your faith. Take it from someone that has had a very difficult year. Besides...I plan on seeing every one again someday and we can't all meet in heaven if we all aren't saved, can we? I know where I'm going...do you? Eternity is an awfully long time...
Here is a current picture...taken just minutes ago. I actually got my hair trimmed today. I like what she did with it...I might actually quit wearing my scarf. LOL!
Wow...if you've made it this far, you must really be dedicated. LOL! Let me just say...if you have been diagnosed with cancer and need someone to talk to, I am here. I will do what I can to help. It's a terrible illness that takes a whole lot of bad days to have a few good ones and I understand. If you ever need someone to talk to, cry with, laugh with, pray for you...whatever, just let me know. While I'm here I'll do what I can. In the mean time... Keep fighting. One day we WILL slay that dragon!!
I also wanted to share something very special that someone sent me. I think its very true.
(Following is a very special letter Russ Lawson received from a friend.)
I am happy for you! I know that probably sounds like a very strange thing to say to someone just diagnosed with cancer but please read on. As a cancer survivor myself, I feel I have a special insight into your situation. First of all, the only cancer that is always fatal is the cancer that goes undiagnosed, so you are already ahead of the game. Secondly, if you didn't know it already, you were terminal before you went to the doctor. Bottom line, you were going to die sometime anyway. God has given you a special gift. A wake up call. Your life will never be the same, no matter how long God in His graciousness chooses to give you. At this moment you are closer to having your priorities in order than you ever have been before. Will you ever look at a sunrise or a sunset the same as right now? How about your family? Has every second ever been as precious as right now? That night, in the dark, when you received your diagnosis, and everyone else in the world was sleeping peacefully, did God ever feel as close or as real as He did that moment? Before your diagnosis you had no guarantee of tomorrow. You don't now. The only thing that has changed is you. You have been given God's eyes and God's courage. You will never again be afraid to share God with someone, because that person may be your last chance to do so. You will never again overlook a need for lack of time or money. God has provided you enough of both, for today. Thirdly, GOD IS THERE for you and for your family. He has given you His personal vote of confidence that with HIM, YOU CAN DO THIS no matter the outcome. What will the outcome be? You are going to die. It may be sooner. It may be later. I don't know. You don't know. The doctors don't know. Only GOD knows...just as before the diagnosis. Put all your faith in HIM and live each day like your last. That's all you can do. That's all He has ever wanted you to do.
One last thing I'd like to say... I would not be here today if it weren't for all the prayers going up for me. I hope each of you realize just how much that means to me. Trust me, I use up those prayers on a daily basis! Thank you thank you thank you!!!
That's it... you made it to the end. *grin* Live each day like its the last cuz you just never know...It could be. God bless each and every one of you.
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