Thank you to all the people who have sent me e-mails, posted on facebook and made comments on this blog site. It helps me put things into perspective and assist in getting my emotions out of high gear to low gear.
On Thursday I fired off an e-mail to Dr. Keating and Dr. Badoux at MDACC asking more questions. Some of the questions were straight forward. One of which whether Joe to not do any treatment and just stay on INCYTE and about the stem cell transplant.
Dr. Badoux replied, "Joe will need chemotherapy prior to transplantation. We can always organize a transplant appointment for consultation and typing when he is here.
Mantle cell lymphoma is a heterogeneous disease and the prognosis is not poor for everyone! There is a good chance of response with treatment and I would not recommend doing nothing."
Dr Badoux comments gave me confidence plus along with the massive amount of reading I did, I truly believe that it is the best option at this time. I did ask him to set up a transplant consultation while we are there this coming week as well as typing done. The articles I read about the R-FCM combochemotherapy is that it is effective and that it can put the disease into remission for awhile. But, it will come back. Each time they do it after a remission period it is less effective. Joe will have four days of chemo this week then will have four days very month for up to six months. It is possible for it to have effect after three cycles. Some patients have had some serious side effects but MDACC has a proven treatment for each of them. Joe and I read some blogs about three patients adventures over a six months and later period of time. Knowing somewhat to expect is helpful.
I told Joe Thursday night at dinner at Chili's of the new diagnosis and what I had found out so far about it. I gave him the hard truth with of course some tears coming from me. Joe handled the news gallantly and brave. It is a blessing that he trusts me so much and that he knows with all his heart and mind that I will leave no stone unturned and fight for him with all my heart and mind. What a man! He is my rock on earth and gives me the courage to do whatever I think is the right thing. While we were there, the squealing in my eyes from the new hearing aids went to the painful stage. Joe could hear them from across the table with all the noise level in the bar area. It is no wonder thay I did not throw them against the wall. We sit in the bar area of Chili's since it is where we get the best service.
On Friday after my MRI, Joe and I went back to COSTCO in Dunwoody to the hearing aid department for the second day in a row. The day before I told them to remove Program 2 and put Program 1 back down to the original level. Well, they did take off Program 2 but they INCREASED the level of Program 1 that was already awful and made it TORTURE! Now, it is down to an acceptable level without the squealing. If it fails again, I will turn these in and get my money back and try a different model.
Since we were at COSTCO, I enticed Joe to buy the 55 inch HD LCD TV that was on sale for $998. The monstrous rear projection TV that is in the living room where Joe prefers to stretch out was fuzzy and we had gotten spoiled by the LCD TV in the den. With Joe recuperating from chemo and the continuing chemo for six months, I wanted him to have a great viewing experience and now he will. Now we have to find time to set it up.
Joe is now down to zero INCYTE and has tapered off of it quite well with additional tiredness but we expected that. Joe keeps saying to others that it proves the INCYTE really works at improving Quality of Life.
IN the last two weeks I have made sure that Joe and I go out to our favorite restaurants and he enjoys his favorite foods. It has been a very "rich" experience and Joe has really gotten his full. I wanted him to eat really good so his stamina would be better. Friday night we hit the Atlanta Fish Market where we had not been since 2/15/2008. The Buckhead Life Restaurant Chain has sent me a $25 off gift card for October so we took advantage of that. After cashing that in, they gave us another $25 gift card for November, They have some of our favorite nice restaurants. Joe had 1.5 pound fresh lobster and I had a lobster mixed scampi. We shared some velvety smooth creamy mashed potatoes and fresh tender green beans. Terrific meal and service. We will not stay away so long next time.
We came home to watch the Braves play the Giants. It was not fun watching the game since at the bottom of the 7th it was 4-1 and the Braves looked horrible. It was more than I could bear. We were both tired since it was late with them playing on the West Coast, so we went to bed thinking for sure, our Bravos would lose BUT......shockingly to us, we found out our Bravos won in 11 innings 5-4. They had tied it up in the 8th. So when we attend the game tomorrow (SUNDAY) at Turner Field the series will be tied. The Braves are really a miracle team with all their injuries of key players like Chipper and Prado. Joe and I will enjoy the day tomorrow. Our seats are in the upper level third base side above 3rd base in the 8th row. I will wear my big red hat which puts me as Bonnie in perfect form.
The steroids that I am taking for my right shoulder is suppose to make me stay awake but it has done the opposite. I suppose that the meds have reduced the pressure on the shoulder which has been more comfortable to sleep. I am so sound asleep and I have been sleeping late. What a huge blessing this is, since I am not laying awake thinking the worse of everything. It also has healed the sores in my mouth from the stress. Who would have thunk!
What a beautiful warm fall Saturday in Georgia to drive to Dahlonega to see Emily Bennett, our next door neighbor's daughter, compete in her first Equestrian Show as a freshman at North Georgia College. On the way there we found a BBQ place attached to a gas station on Highway 9 just north of town called Smokin' Gold BBQ. With some friendly North Georgia ladies running the place they were so sweet. There was a sign announcing their special of 1/3 pound of Burnt End with sides and a drink. Joe and I usually order pulled pork. I asked what was their best BBQ and she said the Beef Brisket. What is "burnt end?" It is marinated brisket cooked in a smoker, then marinated again, and cooked some more in the smoker. The fat is caramelized with no fat showing and black on all sides. She gave Joe and I a chunk to taste and OH MY! It was sensational with my taste buds begging for more. Joe was sold too but we ordered the smaller sandwich which was plenty big. All around the room they displayed the trophies they have won and there are a bunch. It is worth a trip t take especially if you are in the Dahlonega area.
We found Tiffany Farms which is northwest of Dahlonega Square and Joe parked his beloved bright red Ford F150 pick up on the farm owner's field along with the rest of the crowd for the Equestrian Show competition hosted by North Georgia College. With the sky, bright blue and the air warm we had arrived just in time for Emily's event. We found her parents and Grandmother wisely sitting in the shade but we got up to get closer to the action. There was Miss Emily perched straight up majestically on a random horse competing for the first time against 5 other colleges and universities. She won 2nd place in the first round and later on that day, she won 1st place in the second round. Her parents and grandmother were so proud of Emily and rightfully so.
On our way back towards Atlanta I admired the huge displays of tall pink flowers in the median of GA400. The DOT plants them and they are a sight to see. I have a picture of them on my Facebook page.
Joe pulled into the North Georgia Premium Outlet Shopping Center in Dawsonvuille and I asked him why. We are going to CHICOS which he knows is my favorite clothes place but I did not need anything, They were having a Columbus Day sale which I did not realize how good it was. I bought one pair of capris, one pair of slacks, two tunic blouses, a long necklace and two pairs of earrings for only $82. Wow. Joe was pleased! While we were walking towards CHICOS, we ran into Nancy Meyers, one of the MPD Atlanta members who was shopping up there with her husband. She looked beautiful and fresh in her bright orange blouse and capris.
Joe called his sister Donna since she loves nearby and surprisingly Donna and Rick were at home watching Georgia shockingly beat the mighty Tennessee football team. We stopped by for a short visit to update them on Joe. Donna has been following the blog so she was already fulled aware.
When we got home, I decided to crash upstairs for a little bit since I was sleepy. I slept in a red Alaska tee shirt and snoozed away like a log. When I woke up at 7:15, Joe was already up so I just rolled over to sleep some more. It was then I saw that I had my red Alaskan tee shirt on and realized that it was 7:15 PM not AM. Groggingly I walked downstairs and Joe asked where we were going to dinner tonight. I told him to wait till I woke up fully and get my mind clearer. Geez, I am really sleeping soundly.
I recommended that we eat at Nino's on Cheshire Bridge Road since we had not been there in a long time. It proved to be a great pick since Joe ate his entire meal which is very unusual. He had the escargots, chicken Parmesan, and tiramasu, wine and coffee. He was happy and he will sleep great tonight.
We are both looking forward to Sunday and the events planned for that day.
Ciaoi,
Bonnie
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