David’s Journey

David’s journey began in early January, with the “flu. When his flu didn’t go away, on January 18, he went to the doctor, where he was told he had walking pneumonia. Dr. Durfee, his GP, prescribed antibiotics (z-pac), which he took, but which didn’t get rid of the cough. At the January 30 visit, the doctor had him go on another 5-day regime. Again that did not change the cough. In fact, at that visit they also gave him a new blood pressure medication, which after he had been on it for a short time, only seemed to aggravate the cough. He was now coughing all the time.

In March, still coughing, David went back to see the doctor and that is when they made an appointment for him get an X-ray which he did on March 13. On March 20, the X-ray results showed a couple of “granulomas” on his right lung. Granulomas, as described to us, are a non-cancerous inflammation of the tissue of the lung. Dr. Durfee then sent David to St. Mary’s for a pulmonary function test. He was still coughing, but by now had researched the new blood pressure meds and discovered that one of the side effects of them was a constant, dry cough. David, on his own, switched back to his previous blood pressure meds, and the cough, although not gone, was much less.

At this point Dr. Durfee seemed most concerned about David’s high blood pressure and unconcerned about the “granulomas” told David to come back in two months for a follow-up X-ray. At this point David told him “no, I don’t want to wait that long, I need to find out what’s going on, as soon as possible.” On Monday, April 21, he had a follow-up X-ray and was told they would call him in a day or two with the results. When he didn’t hear from Dr. Durfee’s office, he called them and that is when they told him they noticed additional spots, and they then scheduled the CT scan. On the evening of Sunday, April 27 (our Easter) David and I went down to St. Mary’s to have that CT scan done.

Through all of this, Dr. Durfee treated David like a dartboard. Shooting “darts” he would try this and that, hoping to come up with a cause for the cough. At one point, he gave him an inhaler because he thought he might possibly have asthma. Although, David was quite sure he didn’t have asthma, he tried it a couple of times. It did nothing.

Tuesday, April 28, David had an appointment with a surgeon, Dr. Bruce Shabahang. This appointment was to show us the results of the CT scan. It showed one large and multiple smaller spots on his lungs, and we were shocked, to say the least. We had not been prepared for this. All along, Dr. Durfee had been unconcerned and relaxed and casual. He had never given us any indication that there was something seriously wrong, or that we should be concerned. He had not in any way prepared us for the results of this scan.

Dr. Shabahang said he was reasonably sure that it was a Lymphoma and it was completely treatable. Lymphoma is a fast-growing type of cancer, and responds well to chemotherapy and he told us that David would be fine. We of course trusted that diagnosis from a doctor who is involved daily with cancer surgeries. Dr. Shabahang suggested that David would need a biopsy to determine accurately the disease, so it was scheduled for Monday, May 5. We left St. Mary’s feeling shocked and scared, but we also left confident in this doctor and his diagnosis. We had no reason to feel any different.

So, on May 1st, off we flew to Christina’s wedding in Atlanta. We had planned and made all our arrangements months ahead of time, and were going to go as planned. We went with scared and heavy hearts, but planned to have fun, and that is what we did. It was a beautiful weekend. We spent so much time with all our family. Seeing them all was amazing and fun. We went to the fantastic, Georgia Aquarium. David & John went to the Coca-Cola Museum, while the girls went to a Bride’s luncheon. The wedding was so beautiful! We saw much of Atlanta and had a GREAT time.

Monday, May 5, we got John off to school and then got ready and headed to St. Mary’s for the biopsy. David’s appointment was at 10:00. We walked into the waiting area, and immediately saw his mom sitting there waiting for us. That was comforting to both of us. The three of us sat there waiting until they called him in. As they prepped David, Carol and I continued on in the waiting room and at that point my mom and dad showed up to wait with us. The nurse called us and we all headed back there to be with David. While back there, Fr. Jim came to in say hello and also to say a prayer with David. They then took David into the operating room and we returned to the waiting room.

A bit later, Ellen and Linda (who just that morning, had a melanoma removed from her lower back) arrived to be with us in the waiting room. It was such a blessing to have them all there waiting with me, to show their love and support.

When the biopsy was completed and while David was in recovery, Dr. Shabahang came out and Carol and I went in to hear what he had to say. He told us everything went well and that seeing the tumor, he was reasonably sure that it was Lymphoma. “It cut like lymphoma, it looked like lymphoma, it was granular like lymphoma.” So, we left the consultation room and headed back to the waiting room thinking David has Lymphoma. Dr. Shabahang told us that an Oncologist, Dr. Brinker, would be coming up to David’s room to meet us. We would then set up a consultation appointment with the Dr. Brinker for after David got out of the hospital.

We got to his room, and he was awake and in pain. Later that evening, Dr. Brinker did in fact come up to meet us. He told us it was too early to determine what type of cancer, and that it was too soon to speculate. We would have to wait until the pathology reports came back to determine exactly what it was. I believe that was a much better response than Dr. Shabahang’s, where he was giving us a diagnosis before we had all the pathology reports back.

David left the hospital on Wednesday evening, spent Thursday at home recuperating, and went back to work on Friday.

As an aside, David’s sister Ellen heard on the radio, WLAV, that there was a contest to give away Police concert tickets. Someone in the Grand Rapids area had 2 tickets that they were not able to use. They donated them to the radio station and asked that they be given to someone “special”. So, WLAV asked people to write in with the story of someone who could use a “lift.” Ellen did just that and Tony Gates, of WLAV picked her entry. She in turn gave the tickets to us, so on May 11, Mother’s Day, off David and I went, first, to Founder’s Brewery where we met Carol, Ellen and Bryan for drinks and munchies, and then on to the Police concert at the VanAndel Arena. It was so much fun, and we had a GREAT time…. Thanks so much, Ellen! ♥

On Monday, May 19, we had our first appointment with Dr. Brinker, the oncologist, at St. Mary’s Lack’s Cancer Center. The pathology reports were back and we had the shock of our lives. The diagnosis was Carcinoid Cancer. Carcinoid is nothing we had ever heard of. It is a rare, neuroendocrine cancer and David’s type is the atypical version. He was saying words like “incurable” and “more difficult” to treat. NOT LYMPHOMA. We went into that appointment thinking David had Lymphoma and Dr. Brinker would be telling us when David would start treatment. That was not the case. That was the lowest of low days. WE WERE IN SHOCK and unable to even formulate any kind of questions to ask.

Tuesday was my La Leche League meeting and I debated about going. Did it feel important enough? I vacillated and finally decided to go. I’m so glad I did. We had such a nice meeting and when it was over we chatted with the moms that came. There was a new mom, Jill, who had come to our group for the first time. As we talked, I asked her what she did before she became a mom and she told us she is a nurse and had worked up at Butterworth in the juvenile oncology department. Wow! Amazing! I told her some of David’s story and her advice, along with her loving care, was to find the best doctor for the type of cancer David has. I believe that was the best advice we had received at that time, and maybe since.

I then proceeded to ask my co-leader, Laura, to do the research online for me. She is an excellent researcher, and by 8:30 the next morning, I had many avenues to check out regarding Carcinoid Cancer. One of the sites being the Carcinoid Cancer Foundation (see link at right.) When I went to that site, I found phone numbers to call, and that is what I did. I spoke with Sheila and she was so supportive and had so much information for us. She was an angel on the phone and gave me so much information and hope. She faxed me doctors and also information about the Support group in Michigan.

After speaking with Sheila, I contacted Dave Vickery, who is the head of the Michigan Carcinoid Cancer Support group. Amazingly, he lives near Celebration Cinema on the Beltline…about 4 miles from our house. As I spoke with him on the phone, he asked if we would like to meet him for coffee. We said, of course, yes, and met him that evening at Biggby’s on the Beltline. He kindly gave us 2 full hours of his time and gave us so much fabulous information. When we left at 9:00 p.m. we had a growing knowledge of Carcinoid Cancer, and our heads hurt! I will tell you having Dave in our corner is such a comforting feeling. He has lived with Carcinoid for 12 years and has a wealth of personal knowledge. He is so caring and willing to give of his time, and is committed to helping people with this rare disease. He also gave us papers to read and a book on CD. One of his main suggestions was that we find the best doctor…that it would make all the difference and he proceeded to go through the list with us. That is how we found Dr. O’Dorisio. I thank God every day that he sent Dave to us.

In the meantime, Dr. Brinker set up more scans. Another CT scan on the 14th, and an octreotide scan the 20th, 21st & 22nd. At this point, David was referring to himself as “The Human Pincushion.”

On May 23, we had an appointment with Dr. Michael Rush, our new primary care physician. We had decided we were through with Dr. Durfee. When you lose confidence in a doctor, it is time to start fresh.

May 27, David was scheduled for his PET scan. This is a Positron Emission Tomography. It is a type of imaging that uses nuclear medicine. This is where they look to determine if all the tumors look the same. He went first thing Tuesday morning, and we thought it was a quick test. Actually, it took all morning, and into the afternoon.

Another invaluable person, Jen C., Dr. Brinker’s scheduler, has committed herself to ensure all reports and records and pathology find their way to Iowa. Jen has also been a Godsend. She is so fantastic at her job. She takes it personally and is so caring and committed to all the patients that she sees. She told me one night, while in bed sleeping, she startled awake and remember something about David’s case that she was sure she would forget the next day…she got up, called her phone number at work and left herself a message as a reminder. Above and beyond, in my opinion.

We have also been in contact with Dr. O’Dorisio’s Nurse, Jacky, another fantastically helpful, loving and caring person. She does the scheduling of David’s appointment at the University of Iowa in Iowa City. She also has been helping us find a place to stay while we are in Iowa, and ways to get into and through the city with all the flooding that has occurred. Our appointment in Iowa was set for June 18. And so, we continue our wait.

Festival 2008 quickly approached, arrived, and kept us busy for a week. Through all the rain, Festival was a success! It’s good to be busy, seems to make time go faster.

On Tuesday, June 10, Dr. Brinker called and due to the report from the PET scan, wanted David to have another biopsy, this time a needle biopsy of his kidney. That was set for Thursday, June 12.

For this biopsy, we arrived at St. Mary’s, June 12 at 6:30 a.m. Because this was a much less invasive procedure, we were told to go to the short-term stay area. From there they took him to surgery and it took approximately an hour. Back we go to the VERY NOISY short-term area to recover. People in there seemed to be having so much fun. Loud and boisterous. Talking about weddings and such. The nurse had told us to try to have David sleep, because following the biopsy, he would have to lie flat on his back for 6 hours and for the first 2 he would not be able to eat. So that meant from 9:15 to 11:15, if he could sleep, the time would go much faster. Well, try to sleep while in the middle of a party! Annoying to say the least.

While waiting there at St. Mary’s, I received a phone call from Jacky, the nurse in Iowa. She told me that the surgeon that Dr. O’Dorisio wanted for David would not be available on the 18th and could we push our appointment back to the 26th. What a disappointment to say the least. How to make that decision? How to sit and WAIT one more week. We feel we have been waiting for YEARS not weeks and to have to wait another week seemed cruel. BUT, on the flip side, if this doctor, an expert in Carcinoid Cancer, is saying that this is the best surgeon for us, how can we NOT wait? Jacky also said, if we still wanted to see Dr. O’Dorisio on the 18th we could. But that would mean going to Iowa, coming home, going BACK to Iowa the next week and then …. the black hole. Ahhh, the black hole……we don’t know if we will be sent home again, or if we will immediately be going into surgery.

So, following that disturbing call, and another hour or so, David was finally sprung from St. Mary’s around 4:00 and off we went home to really rest! …. and to continue our wait.

On Monday, June 16, we received another call from Dr. Brinker with the results of the pathology report from the needle biopsy. Another interesting, disturbing call. This tumor is DIFFERENT from the Carcinoid. It is called an Oncocytic Neoplasm. It involves the kidney tissue in the ducts of the kidney. He has probably had it for a long time as they do not grow too fast or spread too easily. Dr. Brinker told us it is probably one of two types: 1. Oncocytoma, which grows large, but doesn’t spread to readily, or 2. chromophobe renal cell carcinoma, which is more likely to spread, but would be preferable to any others. In any case, this type of tumor is usually removed, and that is it. They monitor it and that is it. No treatment. No chemo. No radiation. Our hope and prayer is that they will be able to remove both tumors at the same time. Not two surgeries, only one with only one recovery and all that goes with surgery. Please, pray that they are able to remove BOTH tumors with one surgery. That seems, to us, to be the best choice at this time. We will know more following our visit to Iowa.

What I find amazing is how numb you get to everything. NUMB. News that 2 weeks ago would have shocked you, you barely react to. You are just NUMB.

Thank you all for your constant support, love and prayers. It means more than you know.

Love, Connie

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Responses

  1. Sounds like a good start…prayers continue that the chemicals do their work efficiently and “kindly,”

  2. Our prayers and support are with you! After reading this today and talking with David earlier this morning, I am reeling with emotion. With todays medical advancements, I am sure David is getting the best care available. Modern medicine works wonders today! Our hearts go out to you!

  3. Hello Connie, David, and family,
    I am sorry to hear of all you are going through. I will pray for your health David, and for strength for your family.

    Love,
    Christine

  4. Hey David,

    Sorry to learn of your ordeal, but you seem like a strong man and I’m confident that you’ll make it. Beautiful family by the way 🙂

  5. Connie,Dave & Family,

    So sorry that you are going through this. Have thought of you often. My prayers are with you. I hope the Fund-raiser is a sucess. I have passed along the details to all that I have e-mails for. Did Clam ever get a real mustache? I work with Scott,Hannah & Chris L.
    Love & prayers to you and your family.

    Sharon Wood

  6. Hey Connie, Dave and John,

    I finally found this website; sorry it has taken so long. Continuing to pray for you all. Good to know treatment is going well so far. John, we miss your voice coming over the fence with Morgan’s. I believe Morgan and even the girls miss you too. 🙂

    Blessings,

    Dianne J.

  7. Very good article. I will be experiencing a few of these issues as well..

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  11. Я думаю, что Вы допускаете ошибку.
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