*Friday, March 12th (aka my b-day):
Kyle has a doctors appt. with our family doctor. He had told me a short time before that he had a bump on his face that was bugging him. It didn't hurt, but it was starting to bother him. I had not planned on going to this appt. with him, but that morning when I woke up, I "knew" that I should go with him. It would mean that I wouldn't be home to get Eli off the kindergarten bus, so instead of trying to make arrangements for him, I just didn't send him to school (it's kindergarten...what is he going to miss? another macaroni necklace?). Kyle asked me if I was coming with him because I thought he was going to die...he was kidding.
The dr. examined Kyle and told us that he could feel a lump in Kyle's parotid gland. He said it was probably an infection or stone in the gland. He ordered an ultrasound to get a better look, but basically told us that it was nothing to worry about. So, we didn't. I couldn't even remember what the name of the gland was...I knew it started with a "p", but that was about it.
Boy...little did I know that Kyle's right parotid gland was going to become our arch enemy!!!
Parotid Gland: The largest of the 3 major salivary glands.
*Thursday, March 18, 2010:
Kyle goes for his ultrasound. It was quick and painless and we still thought that this was no big deal.
*Monday, March 22, 2010:
Dr. calls. He got the results from the ultrasound, but wants a "better look". He wants Kyle to have a CT scan with contrast. Ugh. Now, I start to worry a little. Luckily, he is able to schedule the scan for 2 days later.
*Wednesday, March 24, 2010 (aka Josh's b-day):
Kyle goes for this CT scan accompanied by his hovering/controlling/obsessive wife. Scan is quick, no big deal.
*Thursday, March 25, 2010:
Dr. wants Kyle to see a ENT and he is sending over the CT results to him. Ok...now I'm freaking out. Kyle's calls the local ENT and he has an opening the next day. Still, we are clueless as to what we could be dealing with.
*Friday, March 26, 2010:
Kyle meets with Dr. Jones (ENT). I went with him, but ended up at the pediatrician with Eli (strep throat...again) and missed Kyle's entire appointment (very frustrating for a control freak of a wife). Dr. Jones explained that according to the CT, Kyle has a mass in his parotid gland. Most parotid tumors are benign, but he needs to do a FNA (fine needle aspiration (biopsy)...look at me and all my medical talk!) to find out for sure. He got approval from the insurance and went ahead and did it right then and there. He told Kyle not to worry, that it was probably benign and that he would call with the results when he got them. Still, we are trying not to worry, but both of us have an "uneasy" feeling...not good.
*Tuesday, March 30, 2010:
Kyle is getting ready to leave for work when Dr. Jones calls with the FNA results. The FNA results came back "suspicious" for a rare form of salivary gland cancer called Acinic Cell Carcinoma. Dr. Jones is still optimistic because Acinic Cell Carcinoma cells share characteristics with other benign types of tumors. He tells Kyle that regardless of what the tumor is, it needs to come out...surgery. He is very kind and tells Kyle that he can do it as soon as the following Wednesday. Kyle agrees and schedules his pre-op appt. for later in the week.
Kyle and I talk for a minute about it, but he is literally leaving for work, so off he goes, leaving me in total shock. I had controlled my urge to "Google" up until then, but that night I spent hours on the internet trying to find out anything I could. I eventually came across a website and forum dedicated to parotid gland tumors. I hit pay dirt. The people on the forum were so knowledgeable about a pretty rare condition. I couldn't find squat about parotid tumors on the internet, but the people on this forum knew EVERYTHING and were so helpful. I immediately started asking them every question I could think of and they would answer day or night. These people are all over the world and know exactly what we are going through. It was truly a blessing to find this forum. I will, from now on, refer to these people as "the forum" and I will be referring to them often.
*Friday, April 2, 2010:
We have learned a lot more about this surgery (parotidectomy), and the risks from the forum. The forum encouraged us to find the most experienced head and neck surgeon that we could. Removing a parotid tumor can be very complicated because the gland is surrounded by facial nerves and there can be permanent damage if a nerve is damaged. Also, with a suspected malignancy, the surgeon needs to be meticulous about getting the entire tumor out without cutting it or "spilling" any of the tumor cells to control the spread of the cancer.
Kyle has his pre-op appointment with Dr. Jones. We are a mess! Everything has happened so fast and we are second guessing everything. We love Dr. Jones and felt good about him doing the surgery, but wondered how experienced he was with parotidectomies. We peppered him with a million questions. He answered every question right and set our minds at ease. We told him we may seek a 2nd opinion, but we are keeping the surgery appointment.
Kyle puts in a call to a former neighbor of ours who is a nurse at a large hospital in Las Vegas. Her new husband is doing his residency in Las Vegas and he tells Kyle about a ENT there who is the best of the best (we will call him Dr. Busy) when it comes to parotid surgery. Kyle calls Dr. Busy's office and is told that the earliest he can be seen is in 4 weeks (hence the alias, Dr. Busy). We are not thrilled by this, but are still having doubts about our small town ENT. Our friend's husband decided to make a call on our behalf and talks to Dr. Busy himself. Dr. Busy agrees to see Kyle on Monday (this was on Friday). We are very happy about this!
*Monday, April 5, 2010
We head into Vegas for Kyle's appointment with Dr. Busy. Kyle had worked all night & Claire was up puking all night. We are all a wreck, but off we went. We even got there a little early so that Kyle could fill out paper work. Well, we waited and waited and waited...over 2 hours. Claire was sick and raging with fever and Kyle could barely keep his eyes open. By the time we saw Dr. Busy, we were at our wits end. Dr. Busy walked in and said, "Wow, that is a rare tumor you've got." The appointment went downhill from there. He agreed with Dr. Jones that the FNA could be wrong, but that the tumor needed to come out. He said he was backed up with surgeries and couldn't do Kyle's surgery for about 4 weeks, but that it was ok because Acinic Cell Carcinoma is a "slow growing" cancer. Awesome. We will just let this potentially cancerous tumor fester in Kyle's face for the next month until you can squeeze him in...no thank you. We left feeling totally defeated. We had no idea what to do. Here we meet with the "skilled" surgeon and don't feel good about it. It is a couple days before Kyle's scheduled surgery and we are more confused than ever.
That evening, after talking to several family members and friends, we asked if our friends Paul and Dennis could come over to give Kyle a blessing to help with the decision. They came right over (well, after the NCAA B-ball Championship game...we have priorities) and gave Kyle a wonderful blessing. Then, Paul & Dennis assisted in Kyle giving me a blessing. By the time everyone left, we knew what to do. We knew that Dr. Jones was the doctor for us. He is a wonderful man who has a "light" about him. We felt that he would be open to inspiration on Kyle's behalf and that he would be guided during the surgery. We will take that over "skilled" any day of the week.
Once we made the decision, Kyle put in a call to his parents. They offered to come and stay with the kids so that I could be with Kyle at the hospital. We gave them very short notice, but they told us that they would be there the following day. We are blessed.
Wednesday, March 7, 2010:
Surgery day. To be continued....(this will require a post of it's own...kyle + anesthesia = hours of stress for the wife)
2 comments:
Got to love the "I just want to get a better look at it". aka "there is something really wrong but I don't want to tell you because I don't want you to freak out". I had the same experience when we found out about Mason's heart condition. By the fifth appt., you know SOMETHING is going on. Why won't they just tell ya?! I think it makes the worrying and stress all that much worse. Geez. What a nightmare! It's like your whole life changes in a split second.
Thanks for your comment on my blog. I try not to feel guilty, but it is the over protective mother thing in me. I have a hard time "Letting go". He does have a special helper who is great. I still feel guilty. Blah!
...still can't believe you're dealing with this. it's amazing to think of talking to you through each step. i still remember talking to you and you telling me about kyle's lump, thinking it was no big deal at the time. then next thing i knew you had gone with him. i felt something had changed at that point. and they will never be the same for you, i'm sure. why do we think we're invincible? you are ALL in our prayers more than once every day. and kyle's care couldn't be in better hands-yours, that is. love you!
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