Wednesday, April 13, 2011

It was a good day, a very good day, indeed.

So today was another big day. We had two doctor appointments. One with the surgeon and another with the oncologist. I was a little nervous, but Jim and I talked about it last night and we decided that no matter what we were told, we were going to make the best of it and it was going to be OK. The appointment with the surgeon was really good. Jim is healing well, gets tired quickly, can't eat quite as much as he would like yet, still sore, but all normal for what he's been through, and within weeks, he should be feeling more and more like himself. The doctor was pleased with his progress, and so are we. Oh and that scar is looking really good, too! So, now onto the oncologist appointment..... what Dr. Gouw said is that Jim has a 20% chance that this could come back. I have to say that was good news to us, because after we got the high risk mitotic rate back we thought the chances of recurrence were going to be much higher. It is very confusing, so bear with me, but this is how they figure it out: 1. size of tumor (Jim's was just under 5 cm) 2. location of tumor (Jim's in stomach) 3. metastasis (none) 4. mitotic rate/how fast cells divide in tumor (Jim's high) So based on this equation they came up with the 20% chance of recurrence. There is a drug that is called Gleevec that he has to take to keep that from happening. He may have to take it the rest of his life, we don't know yet. Sometimes the body forms a resistance to it at some point, but every case is different. There are some side effects, but we are hoping he will not get any of those. He will start on it tomorrow. (Fingers crossed.) He has to have tests every few months to make sure it is not coming back, and that he is remaining stable. It's kind of a wait and see thing at this point. Speaking of Gleevec, this drug costs a lot of money, it can be hundreds of dollars for a one month supply. Most of the time insurance companies won't pay and if they do, there is a lot of red tape and pre-authorizations and hefty co-pays. We totally expected all this, so when we went to the pharmacy, we were expecting the worst, but praise God, they were able to fill it today for $35.00! I couldn't believe it! I made the pharmacist repeat it to me, it didn't register the first time. Holy Cow, what a blessing! God is good! Today could have been much worse, this whole experience could have been worse. Jim is going to live with cancer.....LIVE being the key word. Every day is a blessing! I hope with all my heart that Jim never, ever gets a tumor again. I must say that Jim has had and continues to have a positive attitude. It truly inspires me! That positive attitude just might keep it from ever coming back. Thank you all for your kind words, love, support, prayers, etc, etc. There have really been some dark moments for us the past couple of months, and we couldn't have gotten through them without all of you and without God's love. We are truly humbled and grateful beyond words. We have learned so much about kindness. We will be passing these blessings on to others. Thank you, from the bottom of our hearts!

Wednesday, March 30, 2011

A peaks and valleys sort of day.

A lot of progress was made yesterday by our dear, Jim. He was doing well enough to have the ng tube taken out of his nose, this was really great because it was causing him a lot of discomfort. (He still has the feeding tube, but that will come out soon, hopefully.) He no longer needs oxygen, and they were able to get him off most of the noisy monitors. Jim is still getting up to walk and can sit longer. In the course of his surgical recovery, these things are huge steps! We are so happy and grateful for the good progress! So that was a peak, and we were enjoying that peak, Jim and I even celebrated by taking an extra stroll around the hospital floor. While on that celebratory walk the Dr. caught up to us and said he had the pathology report in his hands and wanted to tell us. So right in front of the elevators on the fifth floor is where he told us (we did ask him to tell us as soon as he knew) that the report said it is for sure cancerous and 7 is the mitotic rate, and it is considered high and so he is in the high risk/high grade category. The Dr. said this so casually, as if we were talking about a score for the latest basketball game. Although the air had just been taken out of our sails, we answered in the same manner, casually. "Oh, okay, I see, well not what we had hoped, but we'll deal with it", Jim said. The casualness didn't seem to go along with the way I felt inside. The Dr. proceeded to tell us that he will have to go on the drug Gleevec for atleast a year. The side effects can be hard for some, but they can help him with those. "This is not something we will worry about until you are all healed and doing well from the surgery", he said. Well, I'm glad that he won't be worrying about it, I thought, because I know I sure will. So strange all of this is, so strange and unnatural it seems to me. Jim took it in stride, as always and just kept telling me "remember, peaks and valleys". I agreed. So to help you all understand, they don't give this sort of cancer called GIST a "normal" staging number like they do with other cancers. They take size, mitotic rate and the type of mutation and assess it and come up with categories. Low, Med, High. Once we meet with the oncologist again, (not sure when that is), we will know more about prognosis, etc. Our valley won't last long, we won't let it. Too much to look forward to. We are already looking ahead to our next peak which is, getting Jim home and out of this Hospital! Onward and upward!

Sunday, March 27, 2011

Healing takes time.

I am happy to report that Jimbo is still on the way to recovery. Although he's doing as well as can be expected, he is feeling a bit miserable. Anyone who has had surgery knows how miserable the healing process can be. He sleeps a lot, he actually falls asleep mid sentence, starts snoring, and then wake up again and will resume his sentence right where he left off. It's quite amuzing, I actually laughed a little the first time he did it and he said "what's so funny?" I told him and he didn't even realize he did that. He is getting really tired of the nose tubes (who wouldn't be), they are making his throat very sore and irritated and he cannot breathe through his nose. When taken off oxygen his oxygen levels dip, so he has to stay on that for awhile. Jim's incision pain is still tolerable thanks to the pain meds. He is able to walk a bit and sit up in a chair for about 10 mins at a time, it really takes it out of him though. I expect all of these things to get a little better every day. The doctors seem to be pleased so far with his progress and so am I. Jimbo is a a strong man in spirit and will be a strong man in body once again, I just know it.

Saturday, March 26, 2011

A tale of love and reality.

"I want the TV on with a kid show playing when the girls get here, and I want to be sitting up in the chair," he said as he grimaced in pain. "I want it to be normal for them." Not wanting to seem as doubtful of that last statement as I felt, or unsupportive of his effort, I replied "oh you're still looking pretty normal, I'm sure they will be fine." I lied, I admit it, but what was I to do? He needed to hear that at that moment. He doesn't want his little girls to be scared of him or the situation, or of anything. Neither do I. But I knew, and so did Jim, that once they saw him like this, pale and thin, tubes in his nose and stapled there to hold them in place, bandages, IV's, etc., there was no way we could hide this reality from them, no matter how much we wanted to, no matter how much we tried and sadly, no matter what fun show was playing on TV.

As a parent, you don't want your children to have any bad moments. No sorrow, no fear, no pain. You worry daily how things will affect them. Your life it seems, centers around their well being, it's like trying to be their superhero. We imagine swooping in and using our "magic" parental powers to solve any little problem, and for a time it works. But as we all know, sadly, so very sadly, at some point in their sweet little innocent lives our parental superhero powers are just not strong enough to fight off the ugliness of reality sometimes. So what do we do? We "fake it till we make it" as my mom always says. We don't lie exactly, but we sort of stretch the truth to try and soften the blow. What I guess I am trying to say is that we just tell them from our hearts, the best that we can about life.

So while we nervously waited for our beautiful little girls to arrive, we tried not to dwell too much on all that was around us. It seemed so strangly quiet even with monitors beeping and the hustle and bustle in the hallway. It was in that moment while we waited in anticipation that I realized this is my new normal and I must accept that.

When Aja and Gianna finally arrived Jim was not sitting up in his chair, he was in bed trying his very best to keep his eyes open and pretend, of course, that he was not at all tired, but unfortunately his efforts were not working. The TV was on, but we forgot to put the volume up. So much for seeming "normal", sigh.... Thankfully, their grandma had talked to them on the way to the hospital about some of the things they might see once they arrived. She had already done the prep work so to speak. Their little faces looked a bit scared and their eyes were a bit wide, but as children often do they spoke the truth and said things like, "Daddy you don't look so good", and "those tubes must really hurt!" They asked a lot of inquisitve, honest questions. They were so nurturing and loving with their Daddy, it brought tears to my eyes to watch them take turns giving him a kiss on the cheek and gently caressing his face, telling him how much they love him. They had such sympathy, in their eyes. It was quite touching, as you can imagine. They didn't want to leave when it was time to go. I was so proud of them, they were so brave.

We all learned a little more about how to deal with reality today, but what I think we learned the most is how much we really love each other and that reality is not so bad when handled with love.

Friday, March 25, 2011

A long day.

Yes, a long day, but that's to be expected. Surgery day finally arrived, and I am glad to say has almost finally ended. Things went well, and when I say well, I mean things went as well as could be expected for this type of surgery.

These are the things I know at this point:

1. The tumor was only in his stomach, they could not see any others.

2. They had to take part of his stomach.

3. The Dr. was able to reattach the rest of his stomach properly, meaning to his duodendum, not to the small intestine.

4. His margins look clean.

5. The pathology report will not be back until late next week (still holding our breath for that one).

Jim kept a sense of humor and a positive attitude throughout the day. Those of you who know him personally, wouldn't expect anything less. Not that we would blame him for not cracking a few jokes at a time like this, but he is at this moment still in good spirits, and for that I am grateful. He is in and out of sleep, but right now his pain level is tolerable. I am staying the night with him. I am prepared for a long night, but hoping that goes better than expected too.

Thank you all for the prayers and love. I will write more tomorrow, hopefully I will be able to think more clearly and give more info then, I have to admit I am a bit tired. I am thankful, so very thankful that today went well!

Monday, March 7, 2011

A bit of a shock.

Hi, it's me Nichole. I will probably be doing most of the blogging for now. I thought it would be the best way to keep everyone who is interested in Jim's progress up to date. We would like to say thank you for your concern, interest, support, prayers, and most importantly, your love. We have been so blessed with WONDERFUL people in our lives. We are very humbled and deeply grateful.

We have only known about Jim's condition a little over a month now. Feb. 3rd was the day, to be exact, that we initially found out that Jim had a serious problem and that in fact, he did have a tumor in his stomach. He had been having abdominal pain on and off for about six months, but it would not last, it would come and go with no rhyme or reason to pinpoint. Then the last week in Jan he had severe pain and nausea that would not let up. After about of week of pain and me telling him he needs to go to the Dr, he finally went. (He is so stubborn sometimes.) The Dr. knew right away that something was brewing and sent him to the hospital for a cat scan. After the cat scan the radiologist told us the Dr. wanted us to go back to his office to talk to him. That was not a good sign. We kind of knew at that moment that it was going to be something more than we thought. Up until that time, we were thinking appendicitis or kidney stone.

When Jim and I got back to the doctor's office he told Jim that he had a "pedunculated stromal tumor in his stomach and it was quite large". Say what? What does that mean? How long has it been there? What do we do? We had so many questions. All he could tell us was that we need to learn what it consists of and that it had been growing for awhile and that Jim should eat softer foods. He never mentioned the word cancer, and we didn't dare let it leave our lips to even ask. He then referred us to a gastroenterologist that accepted our insurance. They could not see him until the following week. It sounded like a lifetime. Before we left I asked the Dr. to please write down on a piece of paper what the radiologist told him and the medical terms so we wouldn't forget once we got home. He wrote: Pedunculated
Mass- Stromal

To see the words MASS and TUMOR was very scary to me.

As we walked out of the office I felt a little shocked, numb and disbelieving. My head was spinning with so many thoughts, ones I did not want to entertain. I am not sure exactly how Jim was feeling, he really didn't say. He just wanted to get out of his pain.

As soon as we got home I went straight to the computer to research. What I found was not exactly what I wanted to read. I learned that those words written on that paper probably more than likely meant cancer and a rare form (only 4,000-6,000 cases per yr. in the U.S.) of stomach cancer called GIST. It is a sarcoma cancer that is a cancer of the connective tissues. So, this cancer is in his stomach and probably in the muscle of the stomach, not the lining.

When the appointment for the GI doctor finally rolled around, things didn't go so well. They gave us to the nurse practitioner and she could not answer one single question. In fact, she told us that "she would be hard pressed to find any doctor in the state of Utah that had ever seen GIST". We walked out of there feeling a bit discouraged.

Back to the internet I went, thank goodness for the internet! I did some more research and found that the Huntsman Cancer Institute, right here in good ole Utah has specialists that do see GIST patients and quite a few of them. They are the only hospital in the Intermountain West that treats sarcomal cancers, GIST being one of them. There was a phone number on the website, so I called. They were so great on the phone, so kind and helpful and they got him an appointment the following week for an endoscopy with ultra sound and a biopsy. I was thinking he would be on a waiting list. I was so happy and a bit relieved. I really knew at that moment that he was going to get the help he needed. I was surprised, because I am always a bit cynical and very skeptical about doctors, but I felt a sense of calmness at that point. Jim also seemed relieved to be going there. One step closer in his mind to be getting out of pain and to move forward.

Jim had the endoscopy on Feb. 14th. Yes, that's right, Valentine's Day. Nothing says I love you like a day spent waiting for your loved one in the really, nothing does. It went well. Dr. Adler was the doctor who performed the procedure. He told us that the tumor was larger than they had suspected from the cat scan and that it was in fact, the size of a softball or a grapefruit (however you choose to visualize). That was a shock. No one had ever described the actual visual size. In my mind I thought walnut size at the most. A softball, wow, I wasn't prepared, neither was Jim. The next step (there are many steps I have found), was to wait for the biopsy report to come back. A week is how long we would wait and the doctor told us we should know if it is malignant or not and much more info. That week drug by. We did keep busy, we have two kids and both work, after all, but it still went by slowly. Jim is much more patient than I am. He takes it all in stride better than I do. The doctor called early in the morning and of course Jim was at work when he talked to him. According to Jim the Dr. said they didn't get enough tissue, and they couldn't tell positively if for sure malignant, but it had spindle cells that is indicitive of GIST. He was forwarding him to the oncologist and surgeon. We wouldn't know more about the tumor and the mitotic rate (growth rate), etc until it comes out and they can test it properly. That for me was a real let down. To me, only speaking for me, I felt the biopsy was all for nothing really, we didn't know anything more. Jim, of course, in great Jim fashion, brushed it off and said "peaks and valleys, we have to get used to it, don't get too upset." Man, I felt stupid and selfish at that moment for getting upset about it, I should be the encourager, not the upset one. He's the one with the illness, not me. I want to be more like Jim. I really, really do.

Well another week or so passed and he had the appointment with both the oncologist and surgeon on the same day. I went with him. I had a big list of questions, of course. It was a long day, but a good day. Good because we really liked the doctor's, both very knowledeable, experienced, and kind with a great bedside manner. (Not always the case. ) Long, because of my list of questions, not really, well, kind of, but it was a lot of info to digest. They are highly convinced that it is GIST (cancer) and that it is considered "large".

So, that brings us to the next It is scheduled for March 25th. We were told that the surgery itself can take anywhere from 3-5 hours. They will have to take part of his stomach, they are not sure how much yet, and they are not exactly sure how they will re route his stomach to his digestive system, meaning enough tissue left to reconnect to the duodendum or re route to the small intestine. His hospital stay could be anywhere from 3-10 days. The total recovery time could be anywhere from 3-6 mos. Everyone is different. The incision will be from his sternum down to his navel (quite large). It will be pretty sexy, I'm sure once it's healed. I do like a good scar on a man, kind of rugged. haha....

So we are gearing ourselves up, as much as one can, for the surgery. We sort of know what to expect, but really, we don't. Jim just says...."bring it!" He wants to move on with it. Me, well I worry about him. I hope for the best. I am on my knees in prayer a lot. I want the best for him always. I love him after all. He's my best friend. Nothing feels real until I share it with him first. He's the first person I see in the morning, the last person I see before I close my eyes at night. The one person on this earth that knows me the best...the good, the bad, and the ugly sides and chooses to love me anyway.

We have a long road ahead of us. Stay tuned.....