Wow! What a week it has been. Thank you all for your kind words and your prayers for our family. We have really felt the presence of the Lord this week. And while the waiting and testing process is so hard, we have found strength in Him and He has filled us with great peace. The Lord is hearing our prayers and we are so blessed by all of you!
I want to document this process so that when we get through this I will be able to look back and see all the amazing things God has done and not just remember the sleepless nights and the chronic worry this has brought to us. So if you all would bear with me, this first post might be a little lengthy, so skip on down to the bottom if all you care about is the result of the colonoscopy.
Will found a lump in his neck in a lymph node just about the clavicle. It was hard, but did not bother him. He pushed on it and wondered about it for a while, but hoped it would disappear. When it didn't go away he called his general practitioner, Dr. J, and scheduled an appointment. A week and a half later he was sitting in the Dr. J's. He said that he honestly didn't know what it was and that we should schedule a CT scan of the neck. He thought for sure it was not in a lymph node, however. By this time, the lump was growing daily and it was actually starting to cause some pain for Will. The result of the CT was a mass about 5 cm large with suspicious edges. We were then referred to an Ear, Nose and Throat specialist.
A week after that, we were sitting in the ENT's office, Dr. M, told us that 9 out of 10 times this is just an infection and antibiotics would do the trick. Well, after a week on antibiotics there was no change. Dr. M said it was time to do a fine needle aspiration. It was done in the office and was pretty quick. His opinion was that if it was anything, it was probably lymphoma. We braced ourselves for that and did a little research about that type of cancer. A few days later we got a call that the pathology on the FNA was back and it was not lymphoma. Dr. M told us that based on the pathology of the cells we were probably looking at thyroid cancer or lung cancer. (Seeing as Will still runs 50 miles a week and has never been a smoker, he put his wager on thyroid cancer. Again, fairly easy to treat in the world of cancer.) But the pathologist could not come up with a definitive answer on that. He would need a few more days to try to pinpoint exactly what kind we were looking at. The results, 4 days later, were still inconclusive. It was positive for metastatic carcinoma of the neck with unknown origin, non small, non squamous with papillary characteristics. We were on the move again.
We were referred to an oncologist and a radiation oncologist from there. The radiation oncologist had the first available appointment, so we went there to see Dr. G. Our appointment was on a Tuesday. Dr. G's assessment was that a full body PET scan was needed next to determine if we could find the source of this cancer. He explained to us that there are certain characteristics that each type of cancer will have, like different flavors of ice cream. He used the analogy of ice cream so much that I thought about asking him to stop referring to my husband's cancer as ice cream. He was also very offensive in his speech. I left his office feeling like I needed a bath. Although he did a great job of explaining every aspect of the information we had so far, I was ready to get out of there and go schedule the PET scan. To me, it should have been done that day, but sadly he said we needed to schedule it.
I remember standing at the counter trying to hold back tears while we waited to find out when that was going to be scheduled for. The following Monday was the first available. I couldn't control it; I started crying and begged him to fit us in earlier than that. I told him that my heart could not handle another weekend of not knowing. He told me that the PET machine had been broken for 2 days and that the guy who ran it was off on Wednesday. So all the patients from Mon., Tues., and Wed. had to be fit in the last two days of the week along with the ones that were already scheduled for those days. There was nothing we could do. He was sorry. We walked back to the van and Will just reassured me that God knew when we needed the scan. That God was in control and that we had to trust in His timing right now. On the drive home Will's cell phone rang. It was the guy who schedules the PET scans. He had a cancellation on Thursday morning right after we walked out the door. I nearly peed my pants I was so excited. Will looked at me and smiled "God is in control of this, not us."
We went to a prayer meeting that night with our pastor and his wife, who has been battling Stage IV breast cancer for 6 1/2 years. We had a wonderful night of worship and then Will, and many others, got prayed for. He actually fell to the floor and started shaking. He said afterwards that it was like a bolt of electricity running through his body. He felt the Holy Spirit like he had never before and was glowing the rest of the night. The woman praying for him said that she could feel such heat coming out of his body, that it felt like fire. By the way, the woman praying for him is a woman that we have known for years; she loves the Lord with all of her heart.
I prepared myself to not get the results of the scan until the next day and possibly even over the weekend. But on Thursday morning, not 2 hours after the PET scan we got a phone call from the doctor. He was leaving for the day and had not gotten Will's results so he went to the lab to look at them himself. I felt like this was great favor given to us by God for the doctor to do that. Unfortunately the news was not good. He told us that there were lesions on the colon and the liver. He said that he was going to get a colonoscopy scheduled as quickly as possible, and that it looked like we were dealing with colon cancer. I cried my eyes out. One of those cries that comes from so far within you have no idea where it is coming from. Will had tears in his eyes, but decided to go to work to keep busy and not think about it. I could barely breathe. I felt a tightness around my chest that I can only liken to a snake wrapping me up in it's coils and squeezing me to death. It was that bad. I called a dear friend of mine to come over and help with the kids. I just didn't think I could do it. Of course she came right away and stayed with me until Will got home that afternoon.
I did a search on the Internet about colon cancer after Will left for work. Based on the fact that it was in his lymph nodes and in his liver everything I could find said that it was Stage IV; likelihood of survival very low. I just freaked out. I sent out an email to everyone I knew saying that Will had Stage IV colon cancer and to please pray. We were devastated, but continued to seek the Lord for a miracle and for strength and peace. The phones started ringing off the hook, emails were coming in faster than I could read them. The love and support from our friends and family was truly overwhelming. While it was wonderful, quite frankly it exhausted me. I felt like a zombie by the time I got to bed that night.
But I kept turning to the verse in Jeremiah 29: 11 " For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future." If you continue to read past verse 11 it says that we are to call upon His name and pray to Him and He will listen. If we seek Him with all of our heart we will find Him and He will bring us back from captivity. This was what I am holding on to. This is a promise from the Almighty God, our Father, seated in Heaven and enthroned on high! I will call upon His name and pray. I will hold onto this hope and it will give me strength. Because nothing earthly is going to do that. Every appointment we have been to is worse news than the one before. Even the colorectal surgeon looked at us and said "wow, you guys haven't heard anything good in a while!" It is true, but we are choosing to put our faith and our hope in Him, not in the doctors.
The colorectal surgeon, Dr. B, brought us into his office yesterday and gave us even more horrible news than we got from the phone call from Dr. G. He said that Will's entire abdominal cavity and pelvic cavity were full of lesions. He said that it was covering the lymph nodes surrounding the colon, on the liver, on the spleen, and going up the lymph nodes towards his neck. It was everywhere. He said that unless he found something obstructing the colon, he was not going to do surgery. He didn't think we had that kind of time to wait for Will to heal from surgery before starting chemo. I have to tell you, it took my breath away. I tried to breathe, but I just started crying. He asked me if I was okay and, through blowing my nose and wiping tears from my face I said "NO! I am not okay. I have 3 small children at home; I need him here with me and no one is moving fast enough." He was very kind about my losing my temper, but none-the-less, couldn't promise us anything other than he would do his best to get our answers as quickly as possible from the colonoscopy. We left his office and bought Miralax, Gatorade and Dulcolax. We went down the self check-out lane :)
So that brings us to today. A sweet friend of ours picked up the kids to take them to their Mother's Day Out program and brought us dinner for at least a week! We left for check in at the hospital. Pastor John, Will's mom and I were all there. The procedure took about 30 minutes during which time I had the unmistakable urge to vomit. The kind of sensation you get when you are in your first trimester of pregnancy and you feel like any little thing will set it off. It was a long 30 minutes! Dr. B said that he saw nothing of significance and that he found only one small polyp and he did not believe it was cancerous. He said that he could feel a mass in the pelvis pushing down on the colon, but nothing inside the colon itself. While the excitement of it not being colon cancer should have given me reason to celebrate, I couldn't help but worry about what that meant. He has no idea where the cancer is coming from and we may have to classify it as unknown primary.
Dr. B said that Dr. S, the oncologist that we are meeting with in two days, knows the steps to take at this point. There are other tests that we could run, but Dr. S is the expert and he would tell us how we should proceed from here. He kept telling Will he had to focus all of his energy on beating this cancer and even went as far as to say that if he beat this cancer he would do another colonoscopy in 5 years. That floored me, just the simple word "if" can do more damage to your heart than a thousand other words. My natural mind wants to keep thinking about that simple little word and how that would change our lives forever, but I choose not to. I am going to meditate on God's words and God's promises to me and to Will and to our family, because I believe that is what he wants me to do and to be quite honest, I don't think my little broken heart could take thinking about that word right now. I believe that words are very powerful and should be used with extreme caution. I want to speak life giving words now and always; and that word is definitely not life giving.
I have another post that I can't wait to pull up on all the crazy books and emails and phone calls I have gotten over the past few weeks. It really will lighten things up around here. Not to mention the tons of pictures of the kids that I need to get up. Oh well, I am exhausted and need to get some sleep tonight.
