Susan:
This entry is a part of the blog where you may question what I say. You may ask, "Was Shannon in her right mind to make such a decision?" You may ask, "Why didn’t her husband step in and force the surgery on her?", "Why didn’t her mother vocalize what she felt and scream from the mountains, 'Have the surgery, Shannon! Have the surgery!'?"
This much I do know: our adult children will do as they want, not what we want. I lived this, I know.
It was January 2010; Shannon had finished 6 cycles of her clinical trial treatments. She was starting cycle 7 when she felt a small lump in the spot where the melanoma had been removed from her breast. She and her physician could not be certain that it was not breast fiber, scar tissue or something else for that matter. No conclusive results would be known medically without surgery. If Shannon’s cancer was back again, then for her it would mean going all the way back to Cycle 1 and starting again with 6 more months of the dreaded and sickening stomach shots of IL2.
Before Shannon and Ben told her father and me about the lump, they prayed. Shannon and Ben prayed until they felt they had direction and peace with their decision. Shannon told her father who in turn told me. No one knows about this but her immediate family. I am not sure she told anyone about this, ever. Shannon decided that she felt peace and should not have any surgery. Ben supported her decision. So when Sean told me that is how I was told. A decision was already made. Sean also felt that Shannon made the right decision. Christopher and I both had different feelings about this lump. I was happy and felt great joy that my daughter would trust the Lord with her body. She was exercising powerful faith. However, I felt Shannon should have the lump removed surgically. I felt that this was the only true way to know what it was and then deal with it accordingly. I felt that Shannon was in a fight for her life. I told Shannon one time-- only one time-- that I thought she should have surgery. She shut me down and told me to stop being negative. Shannon said what she needed was positive support. So that is what she got from me. But as hard as I tried I could not shake that uneasy feeling of the possibility of cancer being left to do its deadly work. Throughout the rest of Shannon’s battle that lump would come and go. In the end this is where the spreading began and took off like a wild fire. I never felt sicker at heart that I had been right. I didn’t want to be right.
I have shared these feelings with you for a testimony of what real strength in weakness is all about. What a gift my daughter received that she was able to have so much faith in her decision. For me? Well, for me my feelings are best left at the feet of a loving God, who loves me and will help me to emerge from the ashes I find myself in. I will emerge from the ashes a stronger woman, a more tender woman, who has suffered and learned a lesson that could only be taught by living it.
I know as a reader of my blog posts this one may seem so different to you. But it is an important entry. Shannon was strong in faith. Strong in love, strong really in everything she did. She was a truly amazing person who I respected and admired. She held fast to the promise she felt she had gotten from her Saviour. Was she right? Was she wrong? I don’t know. Is there a right? Is there a wrong? I don’t know. This I do know: Shannon teaches us all by how she lived and how she believed until she had no more breath.
Showing posts with label clinical trial. Show all posts
Showing posts with label clinical trial. Show all posts
Monday, September 24, 2012
Saturday, August 4, 2012
Strength in Weakness, Part 2
Susan:
This is the second selfless act that I want to tell you about. It is the story of Shannon taking part in her cousins wedding in South Carolina in September of 2009.
When Shannon was diagnosed and began her treatments she was determined to be in her cousins bridal party. I actually had conversations with Shannon and it went something like this: "Shannon- don't you think this is just too much? The wedding is going to take place during your stomach shots of IL2." Shannon would just say, "Mom I will be okay." She would say, "Somehow I am going to do this." I really felt she was grasping for something that she was not going to be able to physically do. I had already seen two months of what the IL2 did to her.
Shannon could not administer the four stomach shots of IL2 herself. Ben, Shannon's husband, had to give her the shots. It was hard on him I know but just like everything else, Ben was a tower of strength and calm for Shannon. During these treatments Shannon had all kinds of medications she had to take all night long. She would run fevers, would retain fluids, she would get the rigors, where her body shook uncontrollably. She turned bright red for days with a rash all over her face and upper body. She also would get a hard knot in her stomach that hurt and stayed hard for a very long time. She was nauseous and would vomit and have diarrhea. She would cry during the night and not be able to sleep. During these four days she could not really eat anything. So she felt sick and weak. It was a hard treatment but we had such hope in its outcome.
Shannon had worked it out with her clinical trial nurse that she would start her IL2 shots the month of the wedding on Monday, ending it on Thursday. She and Ben drove to South Carolina on Wednesday with the intention to get her down there relaxed in her hotel and so she could help her cousin with preparations.
After arriving in South Carolina she helped Lauren, her cousin, with many different things in preparation. I arrived on Friday around 2 and met her along with the bridal party at a manicure place. I took one look at Shannon and was shocked at how bad she looked. It turned my stomach. I said to her, "Shannon, are you okay?" This time Shannon actually took me aside and told me how very sick she had been. How she had been up the entire night and was the sickest she had been so far. I wanted to just take her in my arms and hold her and protect her from this vicious cancer and the treatments. But instead, we went into the salon.
That night we had the rehearsal dinner and she still prevailed and acted strong. She was so sick though. The following day she woke up and went back to work getting things ready for the wedding.
Everything turned out lovely and the wedding was so wonderful. But my little girl was so very sick through the whole thing.
Shannon's drive home also was difficult because she had not brought a pillow and had to have a seat belt cut across her stomach where she had four fresh, hurtful, hard knots. She wept going home.
Later, when my son was looking at the wedding pictures he asked me, "Mom, why does everyone look good in these pictures but Shannon?" I then told him the story. Many people might not have had a clue throughout all of this, but she was a very sick girl during this time.
I wanted to tell this because this was just another example of how Shannon was determined to not allow this cancer to keep her down. She wanted to be a part of this special time with her cousin. She managed it. I was very proud of her. I hope you all are too!
This is the second selfless act that I want to tell you about. It is the story of Shannon taking part in her cousins wedding in South Carolina in September of 2009.
When Shannon was diagnosed and began her treatments she was determined to be in her cousins bridal party. I actually had conversations with Shannon and it went something like this: "Shannon- don't you think this is just too much? The wedding is going to take place during your stomach shots of IL2." Shannon would just say, "Mom I will be okay." She would say, "Somehow I am going to do this." I really felt she was grasping for something that she was not going to be able to physically do. I had already seen two months of what the IL2 did to her.
Shannon could not administer the four stomach shots of IL2 herself. Ben, Shannon's husband, had to give her the shots. It was hard on him I know but just like everything else, Ben was a tower of strength and calm for Shannon. During these treatments Shannon had all kinds of medications she had to take all night long. She would run fevers, would retain fluids, she would get the rigors, where her body shook uncontrollably. She turned bright red for days with a rash all over her face and upper body. She also would get a hard knot in her stomach that hurt and stayed hard for a very long time. She was nauseous and would vomit and have diarrhea. She would cry during the night and not be able to sleep. During these four days she could not really eat anything. So she felt sick and weak. It was a hard treatment but we had such hope in its outcome.
Shannon had worked it out with her clinical trial nurse that she would start her IL2 shots the month of the wedding on Monday, ending it on Thursday. She and Ben drove to South Carolina on Wednesday with the intention to get her down there relaxed in her hotel and so she could help her cousin with preparations.
After arriving in South Carolina she helped Lauren, her cousin, with many different things in preparation. I arrived on Friday around 2 and met her along with the bridal party at a manicure place. I took one look at Shannon and was shocked at how bad she looked. It turned my stomach. I said to her, "Shannon, are you okay?" This time Shannon actually took me aside and told me how very sick she had been. How she had been up the entire night and was the sickest she had been so far. I wanted to just take her in my arms and hold her and protect her from this vicious cancer and the treatments. But instead, we went into the salon.
That night we had the rehearsal dinner and she still prevailed and acted strong. She was so sick though. The following day she woke up and went back to work getting things ready for the wedding.
Everything turned out lovely and the wedding was so wonderful. But my little girl was so very sick through the whole thing.
Shannon's drive home also was difficult because she had not brought a pillow and had to have a seat belt cut across her stomach where she had four fresh, hurtful, hard knots. She wept going home.
Later, when my son was looking at the wedding pictures he asked me, "Mom, why does everyone look good in these pictures but Shannon?" I then told him the story. Many people might not have had a clue throughout all of this, but she was a very sick girl during this time.
I wanted to tell this because this was just another example of how Shannon was determined to not allow this cancer to keep her down. She wanted to be a part of this special time with her cousin. She managed it. I was very proud of her. I hope you all are too!
Sunday, July 29, 2012
Strength in Weakness
Susan:
This begins a series of posts that will tell about the heroic and full of faith steps Shannon took in her life after diagnosis. She lived hard and strong. Having faith all along that she would be healed she also gave her life back to God many times in prayer to take or to heal. She was small in stature but strong in faith.
After finding out her diagnosis and prognosis, surgeries, and finding the only clinical trial in the area that offered hope, Shannon moved on to the next natural step of her life. On July 2, 2009, Shannon bought her first and last brand new black VW bug. She could not have been more excited. When she drove it by here to show me my internal reaction was, "Shannon you are dying, why would you buy a new car?" But Shannon had 2 1/2 years with that car and she enjoyed every minute of it.
The second thing Shannon did is this: on my birthday, July 9, 2009, she went to Franklin Square and picked up her shots and all the equipment she would need to administer both leg shots of IL2 and stomach shots of IL2. She and Ben came home and did the first of her leg shots. Shannon then ran to Sam's Club, buying me a birthday cake, Ben went to buy us all dinner, then Sean took me on the boat and there they were all waiting for us on the end of a pier with dinner and cake and Shannon in her glory showing strength in physical weakness.
This was just the beginning of things she did for others and that is what I will continue with for a while.
Wednesday, June 27, 2012
Cycle 2 -- Halfway Through It
Shannon:
August 15, 2009
So it is the 10th day of Cycle 2 and I am more than halfway through my shots. My ”bio-hazard” container is starting to look crowded and I am feeling pretty good. I have definite mixed feelings at this time in the cycle. The ingredients of my feelings are equal parts of the following:
I am also happy that Thursday was the last day of my physical therapy appointments. I have graduated and I have been using the sleeve without any problems to go to the driving range. Me and hubby went up to the Par 3 course in Severna Park and played a game to prepare for our real game on Saturday. I did worse than what I wanted but I guess not so bad overall. Ben came in 10 over par and I came in 11 over the ladies’ par. I will beat him someday. Of course I did not count any of the “practice” shots that I needed to take.
I have discovered in the course of wearing my new golf shoes that my left foot is bigger than my right. By the 7th hole of the course I was quite finished. My two littlest toes on my left foot were falling asleep because that shoe was too tight, my hand was cramping because of my gauntlet, and bugs were starting to bite me. Now anyone who knows me well knows that I do not “do” nature… or discomfort in general. I just don’t see the point in not being completely comfortable unless it is for the most fabulous shoe one could ever imagine.
So Saturday has rolled around and with it – the real game of golf. I woke up in fighting mode ready to go. My husband tried to kiss me right before we left for the course, but I didn’t allow it lest he think I wasn’t serious competition. We met my dad down at Annapolis Roads Golf Course and got geared up. Out we went to our very first hole, a par 4. I got an 8…so much for being serious competition. I did not do as well on a real golf course as I did on Thursday. I ended up 18 over par. Ben was 7 over. I can’t prove it, but I am pretty sure he cheated.
Going along with my determinedly positive attitude I decided my handicap is 18 and so I actually played par golf and beat Ben by 7 strokes. I win!
August 15, 2009
So it is the 10th day of Cycle 2 and I am more than halfway through my shots. My ”bio-hazard” container is starting to look crowded and I am feeling pretty good. I have definite mixed feelings at this time in the cycle. The ingredients of my feelings are equal parts of the following:
- Relief that I pretty much halfway through this cycle.
- Weariness that I have 8 more shots
- Trepidation that I am only 4 shots away from the dreaded stomach shots.
- Peace and joy because it is really not so bad, I feel good, and God has my back.
My first score card
I have discovered in the course of wearing my new golf shoes that my left foot is bigger than my right. By the 7th hole of the course I was quite finished. My two littlest toes on my left foot were falling asleep because that shoe was too tight, my hand was cramping because of my gauntlet, and bugs were starting to bite me. Now anyone who knows me well knows that I do not “do” nature… or discomfort in general. I just don’t see the point in not being completely comfortable unless it is for the most fabulous shoe one could ever imagine.
So Saturday has rolled around and with it – the real game of golf. I woke up in fighting mode ready to go. My husband tried to kiss me right before we left for the course, but I didn’t allow it lest he think I wasn’t serious competition. We met my dad down at Annapolis Roads Golf Course and got geared up. Out we went to our very first hole, a par 4. I got an 8…so much for being serious competition. I did not do as well on a real golf course as I did on Thursday. I ended up 18 over par. Ben was 7 over. I can’t prove it, but I am pretty sure he cheated.
My second score card was not so pretty...
Monday, June 11, 2012
Medical Oncologist and First Clinical Trial
Susan:
Shannon went from having the ancillary lymph node dissection surgery to physical therapy almost immediately. During this time she also changed her job location and job assignment with the Army Audit Agency. She moved from working at Ft Meade, Maryland to working at the Pentagon. She was put on a research team at the Pentagon and this allowed her to telework on days she was not well enough to travel to Virginia. Looking back, this was a wonderful thing the Army Audit Agency did for Shannon.
Shannon was referred to a Medical Oncologist to pick a treatment drug to help fight to keep the cancer cells from coming back. What she and Ben found when they went to their first appointment with Dr. B. (not the same Dr. B) - is that there is no cure drug for Stage III Melanoma. This is also the first time she and Ben had heard her staging. Dr. B. told Shannon and Ben that they might as well not even bother trying Interferon- which was the standard of care at the time. Dr. B. told them it would just make Shannon very sick and not really do anything. Dr. B. told Shannon that her best chance for a longer life was to find a clinical trial. He gave her some quick advice on how to find one and then – zip- he was gone from the exam room.
When Shannon came home and called me to let me know how the appointment had gone, I was shocked that Dr. B. had not explained things more fully to her. Shannon and Ben knew that they did not want to choose a clinical trial that was randomized. They wanted to be sure she was receiving treatment medications. Over the next few days I had to work on Shannon to get her nerve up to call Dr. B.’s office for some advice on how to pick the right Clinical Trial.
Shannon put a call in to Dr. B. and he called her back and he seemed more relaxed on the phone with her and they reviewed a few trials and ended up selecting one that was soon to start at Franklin Square Hospital in Baltimore, MD. Dr. B. put the call in for her and she had her appointment. Shannon and Ben met with the physician at Franklin Square and the nurses that would be taking care of her. She and Ben both felt peace in their decision to begin this clinical trial.
This clinical trial is best described by Shannon in her own words.
So, we will hear from Shannon for the next few posts. You will hear her hope and faith coming through loud and clear. We were all looking on the bright side and believing God for a miracle.
Shannon went from having the ancillary lymph node dissection surgery to physical therapy almost immediately. During this time she also changed her job location and job assignment with the Army Audit Agency. She moved from working at Ft Meade, Maryland to working at the Pentagon. She was put on a research team at the Pentagon and this allowed her to telework on days she was not well enough to travel to Virginia. Looking back, this was a wonderful thing the Army Audit Agency did for Shannon.
Shannon was referred to a Medical Oncologist to pick a treatment drug to help fight to keep the cancer cells from coming back. What she and Ben found when they went to their first appointment with Dr. B. (not the same Dr. B) - is that there is no cure drug for Stage III Melanoma. This is also the first time she and Ben had heard her staging. Dr. B. told Shannon and Ben that they might as well not even bother trying Interferon- which was the standard of care at the time. Dr. B. told them it would just make Shannon very sick and not really do anything. Dr. B. told Shannon that her best chance for a longer life was to find a clinical trial. He gave her some quick advice on how to find one and then – zip- he was gone from the exam room.
When Shannon came home and called me to let me know how the appointment had gone, I was shocked that Dr. B. had not explained things more fully to her. Shannon and Ben knew that they did not want to choose a clinical trial that was randomized. They wanted to be sure she was receiving treatment medications. Over the next few days I had to work on Shannon to get her nerve up to call Dr. B.’s office for some advice on how to pick the right Clinical Trial.
Shannon put a call in to Dr. B. and he called her back and he seemed more relaxed on the phone with her and they reviewed a few trials and ended up selecting one that was soon to start at Franklin Square Hospital in Baltimore, MD. Dr. B. put the call in for her and she had her appointment. Shannon and Ben met with the physician at Franklin Square and the nurses that would be taking care of her. She and Ben both felt peace in their decision to begin this clinical trial.
This clinical trial is best described by Shannon in her own words.
So, we will hear from Shannon for the next few posts. You will hear her hope and faith coming through loud and clear. We were all looking on the bright side and believing God for a miracle.
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