Background Information - Wednesday, November 22nd, 2006
On October 9, 2006 I called my Urologist, Dr P (no pun indented), because I had a urinary track infection. He gave me a prescription and (because I have kidney stones) scheduled me for a CT Scan. In a few days I was feeling much better again, and I had my CT Scan.
About a week later (Oct 20th), I returned to Dr P to see what the CT Scan showed. He said I had a spot on or near my pancrease, and I needed to see an oncologist. His CT Scan wasn't focused on that area, but he seemed sure I needed to have it looked at.
Monday, the 23rd, my primary care doctor, Dr R, called me at home. Now, I've been going to him for 25+ years, and he has never called me at home! He said there was a strong possibility of pancreatic cancer and said that he had made an appointment for me at an oncologist office for Wednesday the 25th. This was not going in a direction that I liked!
Over the next day or two, I (and my wife) did a lot of reading on the internet about pancreatic cancer - and the news was not good. About 32,000 people get it each year, and about 32,000 people die from it each year.
Wednesday came, and I saw the oncologist, Dr L. He had not seen the CT Scan (different hospital system), but was concerned based on what he had heard. He ordered another CT Scan for the next morning.
I got the results that Friday via a phone call. It was not pancreatic cancer, but it looked like it did look like lymphoma. He said the largest one, near the pancreas, was about 8cm in diameter. There was another one about 2.5cm next to it, and several more in the upper chest - the largest being 3.5cm. I asked which was worse, pancreatic cancer or lymphoma and said lymphoma was much more treatable. So, that was good news. He also said I had a growth on one of my kidneys. So much for the good news. His office scheduled me for a biopsy of the largest growth for the following Tuesday, Oct 31st, and an ultrasound of the kidney.
I got the results from Dr L on Friday. Seems like Friday is my day for news. Growth on kidney is a cyst, and not cancer. Good news. The biopsy showed that the cancer is Mantle Cell Lymphoma (MCL), unusual but not rare. ?? news. Normal treatment is chemotherapy. ?? news. Not staged yet, and I needed to have a bone marrow test and a PET scan (and I don't even have a cat or dog - okay, I'm trying to maintain a good attitude). So, I asked some questions of Dr L. Q: Any idea what stage it is? A: at least stage 3 (4 is worst). Q: What is life expectancy of someone with MCL? A: 1 to 2 years. We did a lot of reading that weekend about MCL, and didn't really like what we found.
The following week, I had the bone marrow test, and the PET scan. The bone marrow test was no fun, but I fell asleep during the PET scan (they gave me Valium). I also went to Dr R, and got a flu shot and a pneumonia shot - never had either, but Dr L thought it would be a good idea.
On Monday, Nov 13th, I got the results. Glad the 13th didn't come on Friday. Cancer is stage 3, not stage 4. Good news. Dr L has found a closed clinical trial that has a 3 year survival rate of 70-80%, and plans to follow that protocol. Very good news. But first, we need to run some more tests. This time they checked the functionally of my heart and kidneys, and had an IV port installed in my chest. I was a little worried about my kidneys, not because of the stones, but because I only have 1 1/4 functioning kidneys.
On Monday, Nov 20th, I got the results. Dr L said that I'd passed all the roadblocks to treatment and was now ready for chemotherapy. I think I'm going to ask for all results on Monday from now on, but I'm not sure I'm looking forward to chemotherapy. Treatment is scheduled to start Monday, Nov 27th - and there are no tests this week.
I don't know about you, but I'm going to have a very thankful Thanksgiving. More later.
Are you a Mantle Cell Lymphoma survivor or patient? - Thursday, November 23rd, 2006
If you are, I would love to hear from you. Please contact me.
Reflections on Thanksgiving Day - Friday, November 24th, 2006
Yesterday was Thanksgiving Day, and it was a special day, and I was thankful to be able to enjoy it.
In the morning, my wife and I attended church. We, along with others, prepared a breakfast for about 50 people, and then we all worshiped and gave thanks, and visited with friends.
Afterwards, we drove to Raleigh to have Thanksgiving dinner with one of our sons' family, and our daughter-in-laws parents. After dinner our other son and his family stopped by and we all visited. Many topics were discussed, and some of us talked past midnight.
It was a good day - visiting with family, friends, and giving thanks to our creator for all blessings, especially this day.
But still, I can't help but think about my upcoming treatments starting in a few days. But then God has given me much peace over the last few weeks, and I know that He will do what is best for me. Praise be to God.
Merry Christmas! - Saturday, November 25th, 2006
Yes, Merry Christmas! It may be the 25th of November instead of the 25th of December, but today our family celebrated Christmas - or at least we exchanged presents. This was the idea of our daughters-in-law, because we don't know when we will next be able to get together with them - because of my immune system.
I had put only one thing on my Christmas list, and that was that they pray that my health would be good enough to be around to enjoy many more Christmas'. But in addition to that, I received items that will be useful to me during my upcoming treatments: things to wear, things to read, things to occupy my time, and things to bring me joy.
My thanks to them. And may I add, "Merry Christmas to All, and to All a Good Night".
Thanks - Sunday, November 26th, 2006
We attended church today, probably the last for awhile. It was 3 weeks ago that I asked our Pastor to announce to the church members that I had cancer, and to ask for their prayers. The non-believers may not understand this, but almost immediately after that I started feeling very much at peace, because the Lord had granted me peace. I've put all this in His hands, and am ready to accept whatever His will is.
I had the opportunity this morning to serve as a Communion Assistant, and this is always a special opportunity. During the past week, I informed the head of our Lay Ministry that today would be my last time as Communion Assistant or Worship Leader until I found out more about how I felt after treatments start.
Afterward the service I was greeted by several members offering hope, help and hugs. During the past couple of weeks I have also received cards, emails and spoken messages of encouragement. To these people, and to all others who are praying for me I say THANK YOU, and may God Bless You (and me).
Upcoming Treatment
Tomorrow, November 27th, my treatments start.
Monday, I will get a 6 hour infusion of Rituxan® at my doctors office.
Tuesday I will check into the hospital for 3 days of Cytoxan®.
Friday they will start a 3 day infusion of Adriamycin®(aka the Red Devil), and send me home. Sometime after this, my immune system will bottom out, and there will be no visitors.
With that in mind, I'll try to write something tomorrow, and after that we'll just have to wait and see how I feel.
November 27th - A good day - Monday, November 27th, 2006
This is day 1 of cycle 1.
We arrived at Dr L's office at 8:45am and met with him briefly to review the day. Then on to the infusion room, a room with about 30 recliners and more than 30 IV stands. Nurse Debbie pulled a blood sample from my port, and sent it off to the labs (same office, but next door). In a little while she started an IV of benedryl that lasted about 15 minutes; then an IV of Dexamethasone for about 15 minutes; then Rituxan forever (we left the office about 4:30pm).
The benedryl made me sleepy, and I took a couple of brief naps in the morning. The Dexamethasone is a steroid that is supposed to tell my immune system to just relax, and get ready for the main event. They started the Rituxan out slowly, then monitored my blood pressure, and increased the rate throughout the day.
The good news was that I had no adverse reaction to any of the drugs. It was just a relaxed day of setting, talking with my wife, and other patients.
They told me ahead of time that it would be cold in the infusion room, so yesterday we went out and purchased a heavy shirt. I never got cold, in fact I will be taking something cooler to wear next time. The fellow in the chair next to me (with pancreatic cancer) was freezing, and had 3 blankets on him, a coat, and was wearing gloves.
Been home now for about an hour, and I feel good. I know my grandson, AJ (5), would have given me a thumbs up and said Good Job PaPa!
Debbie the nurse told me as we were leaving that I did very well today, but that the next 3 to 7 days was not going to be a picnic.
Tomorrow I go to the hospital for 3 or 4 days, so will update this when I get access to the internet and feel up to it.
God Bless you all, and may God Bless us and the medical staff also.
From my room at the hospital - Wednesday, November 29th, 2006
Day 2 and 3 of cycle 1.
Well, through the wonders of wireless LAN I have access to the internet from my hospital room at CMC. And through the miracles of modern medicine and the mercy of God, I feel like writing an update to my blog from my room.
I checked into CMC at about 10am on Nov 28th, and by 4:30pm was receiving my first chemotherapy of Cytoxan. It took that long for the pharmacy to prepare it based on my weight, and Dr L's instructions. I will receive 6 treatments of Cytoxan over my three day stay here; each lasts for 3 hours, and is repeated every 12 hours. So, in theory, my last one should finish up about 7:30am on Friday. Because it is so corrosive, the nurses have to wear special blue gloves, just in case there is a leak. To protect me they started an IV of Mesna, a steroid, about an hour before the first Cytoxan, and it runs 24 hours a day for the three full days, and is intended to protect the bladder and kidneys from damage. They check my urine for blood every 24 hours just to make sure. And they left a pair of the special blue gloves in my room, for me, just in case - without protection, it will each the flesh - nasty stuff, huh.
Side effects: I met with nurse Emily, who gave me a whole packet on cancer, chemotherapy, and side effects of the three chemos that I will be given during this visit: Cytoxan now and Vincristine and Adrimycin when I leave. So far, I feel great, and have been trying to do some walking, with my IV stand around the hospital.
Dr L has also given be a bunch of anti-nausea medicine with my chemo, and the nurses have told me that pain medication and anxiety medicine is available if I need it.
Dr L arrived at my bedside this morning at 6:45 to check my lungs for fluid, and to see how I was doing. He indicated that I should be out sometime on Friday.
After the Cytoxan finished this morning, the nurses did disconnect my IV for about 20 minutes to allow me take a shower, and that helped me feel more normal.
I had a couple of visitors today; Stu from church stop by with a very nice devotional book and we had a short, and very interrupted visit. It had been pretty quiet before then, but it seemed to be the time that all the nurses needed to stop in. Thanks Stu for the stopping by, and for the book. My wife also stopped by, naturally, and stayed until about 5:30 when she left to attend a supper at church prior to the first Advent service.
And I've also had calls from our sons. Overall, I'd say the last couple of days were much better than I was expecting, but I also know that it is too early for some of the side effects to appear. I just need to take things one day at a time.
And I thank God again for TODAY, which I used to just take for granted. What a marvelous day it is. Each and everyday is a blessing for all of us - isn't it.
That's it for this day. God bless you all, and may God bless me, and my family, and the medical team on my case.
More from CMC - Thursday, November 30th, 2006
Day 4 of cycle 1.
Well, my day started off at 4am again, as the nurse drew blood, listened to my lungs, and then started bag 4 of 6 of the Cytoxan. Before retiring last evening I took a sleeping pill at 9pm, woke up about 1:30 because of noise in the hallway outside, so requested and received another one. That helped me to fall back to sleep after the 4am routine.
Next I know, Dr L is calling out my name at about 6:45am. He again checked my lungs and heart, said everything looked good. He is still planning on me getting out of here on Friday, late. I asked if I would be able to attend church on Sunday, and he said yes - so that was good news for me, providing that I'm feeling okay. If I'm there it will be with IV in tow.
I'm starting this at about noon today, but will probably write more later, and post it later. So far, I'm still feeling good, and have not had any side effects (or is that affects?). UPDATE ON SIDE EFFECTS: I may have experienced my first side effect. Lunch arrived about 12:30 (again my fillet mignon was mis-delivered to another room), but I got pasta with meat sauce, green beans, small salad with Italian dressing, fruit cup, and two small cups of vanilla ice cream with a side dish of chocolate syrup - I must say it was all very good - so maybe my taste buds have been compromised. I did special order the chocolate syrup.
Maria, a clinical care coordinator stopped by late this morning to let me know that she will have the home health care folks stop by about 5pm Friday to hook me up with the infusion that I will be taking home with me. Sounds like they will stop by each day for 3 days to renew/remove the infusions.
Dr L gave me 7 prescriptions to get filled when I go home, a couple of them for "just in case". Emphasized the importance of calling the office anytime my temp reaches 100.5 or above. He said I should came back to his office next Tuesday.
Verna, my wife for those of that don't know me, bought an electric razor yesterday. I've always used a regular razor. I was going to open it today and read about it, but I left my chain saw at home, and was not able to penetrate the protective plastic wrap of the package. Guess it will have to wait a day or so.
I'll post this now, but may updated it later today, if anything happens.