Wow what fun this weekend. Adele and I both got up late each day this weekend. What a great way to start a busy day!
Saturday morning was taken up with getting ready for Jon & Angela's engagement party at Shady Maple. We left our house at 10:35 and got to Lititz, to pick up Mom & Dad, to find a fire engine in front of the building. With the firemen there, the elevators were locked down, and Mom had to wait until they were operational, since she was in a wheelchair. We still arrived in Blue Ball early and got there as everyone else was arriving. Party on and Eat! We had a good time, and got home around 4 PM. Later on we heard that Tom was in bed with flu like symptoms.
Sunday was a "Let's stay in bed a while" morning, and we got up late again. Around 1 PM, Beth arrived, and Adele and Beth started in on the "sister talk" hardly stopping for an hour or so. I chimed in once in awhile, while they were chewing on the pizza, but tried to leave most of the time to them. Adele loved it that Lauren also stopped in to see her (and her Mom). As I said we got a pizza from Bella Luna and ate well for lunch.
Two good days in a row. Yes, there is still stress and worry about the John Hopkins visit on Thursday, but that is not going away for awhile. Adele has one doc appointment before Thursday, so it looks like an easy week for us.
Kaelyn, Mason and Ruby are all doing so great. New videos of Ruby at http://www.youtube.com/jooliepoison - catch the one of her using her vacuum - she had not really used it by herself before, but while her Mommy was cleaning, she decided to start using it. These always bring a huge smile to Adele's face, then she starts thinking of when we might see her again. I keep pushing for a 5 day weekend visit - 2 days driving, and 3 days with them in GA.
Thanks for listening. Peace and good decision making are what is needed this week. A clear mind, understanding all the choices and making the right decision, and then sticking by that decision - We pray for that. - Rick
Monday, February 1, 2010
Friday, January 29, 2010
Friday - the week end
OK - today had it all. Grumpy, snappy, angry, depressed, all of it, and that was just me.. This week has been filled with appointments and work for me. I had to go go all week and now I am tired. Just got up from a 2 hour nap and still waking up. Needed to lay down and close the eyes, while Adele watched Dr Phil. Bathory (the cat) joined me and we just fell asleep without ever telling Adele. She found out right after 5 that we were sleeping and joined us for a few minutes.
Today has been a good day. We stayed home, no shopping trip, better for us both - tired and dragging the butt. We will enjoy some steaks from my daughter tonight and then a movie. Adele is feeling more like herself - but she just said "I lost Adele, and isn't sure where to find her." as a description of how she feels right now.
That sums up what I have been thinking for the past two months or so.
Oh well, this weekend is full of things to do for both of us. Saturday we will get to Shady Maple Smorgasbord for Jon and Angela's engagement party. That's the place you come out of thinking "I can't believe I ate the whole thing".
Sunday - Beth is coming over for the afternoon. And we used to think (in the late 60's) that that trip had to be an overnight trip. Oh, Elaine wanted to feed us, so she is dropping Sun supper on Saturday evening.
More later - many appointments next week, with John Hopkins on Thursday being the main one. I will post my thoughts as the week progresses.
Pray for peace all week. Rick
Today has been a good day. We stayed home, no shopping trip, better for us both - tired and dragging the butt. We will enjoy some steaks from my daughter tonight and then a movie. Adele is feeling more like herself - but she just said "I lost Adele, and isn't sure where to find her." as a description of how she feels right now.
That sums up what I have been thinking for the past two months or so.
Oh well, this weekend is full of things to do for both of us. Saturday we will get to Shady Maple Smorgasbord for Jon and Angela's engagement party. That's the place you come out of thinking "I can't believe I ate the whole thing".
Sunday - Beth is coming over for the afternoon. And we used to think (in the late 60's) that that trip had to be an overnight trip. Oh, Elaine wanted to feed us, so she is dropping Sun supper on Saturday evening.
More later - many appointments next week, with John Hopkins on Thursday being the main one. I will post my thoughts as the week progresses.
Pray for peace all week. Rick
Thursday, January 28, 2010
Jan 28, 2010
Today was a good day. Much less stress and Adele seems to be more like her old self. Maybe the new meds are working faster than we expected. She was talking with me and I believe she was more involved than for the past few months.
Today I had work to get done - got back by noon. Adele had a tooth fixed that she had lost a part of. This afternoon, we had a nice time together after some desk work. She did not have a nap, and she got out of bed and showered before I left at 8:30. Wonderful to see her doing such normal things.
Next week on Thursday we will go to John Hopkins and check in with Dr Meade. Many questions forming in both our minds. Hopefully we will get them all answered.
Thanks for all the kind words and offers of help. When we get started in on the BMT at John Hopkins - then we might need some help. Adele had asked for some meals, but once we talked and she realized I never have a problem with cooking, she called and cancelled that.
She even wants to go shopping tomorrow! I have been begging her to do that for the last week. All I need is 2 pillows from Boscov's and she kept telling me, I am too tired.
Sorry for the rambling - need to go to bed with her, and get a good rest in.
Rick & Adele
Today I had work to get done - got back by noon. Adele had a tooth fixed that she had lost a part of. This afternoon, we had a nice time together after some desk work. She did not have a nap, and she got out of bed and showered before I left at 8:30. Wonderful to see her doing such normal things.
Next week on Thursday we will go to John Hopkins and check in with Dr Meade. Many questions forming in both our minds. Hopefully we will get them all answered.
Thanks for all the kind words and offers of help. When we get started in on the BMT at John Hopkins - then we might need some help. Adele had asked for some meals, but once we talked and she realized I never have a problem with cooking, she called and cancelled that.
She even wants to go shopping tomorrow! I have been begging her to do that for the last week. All I need is 2 pillows from Boscov's and she kept telling me, I am too tired.
Sorry for the rambling - need to go to bed with her, and get a good rest in.
Rick & Adele
Wednesday, January 27, 2010
Wed afternoon
We made a decision today. Adele will retire on her 62nd birthday, May 15th or the first business day after that. I have notified the school district and principal of her school. I also called PSERS and have them sending the estimate and once we get that, we can contact them for the final retirement counseling. She has finished her formal letter of requesting a retirement, and unpaid leave time from mid March through retirement.
All that running and writing done by noon, only broke down twice, I did not want to do that, but she loved teaching so much. Now all she can think about is how to get this thing defeated. Cancer, Damn - Damn - Damn - I don't like it, she doesn't like it, it makes her someone else and I hurt with her. Out Damn Cancer!
OK - I also have work to do, especially I will be the wage earner now. Too stressful a day to do much more. Shoulders hurt, back hurts, neck hurts, all tensed up.
The calendar is full of appointments again. One after another - it will be our life for the next six months or so. Many trips to Baltimore for sure. Maybe we can squeeze a trip to Augusta in there for a visit to the Barna branch of our family.
Tired, thanks for listening. Rick
All that running and writing done by noon, only broke down twice, I did not want to do that, but she loved teaching so much. Now all she can think about is how to get this thing defeated. Cancer, Damn - Damn - Damn - I don't like it, she doesn't like it, it makes her someone else and I hurt with her. Out Damn Cancer!
OK - I also have work to do, especially I will be the wage earner now. Too stressful a day to do much more. Shoulders hurt, back hurts, neck hurts, all tensed up.
The calendar is full of appointments again. One after another - it will be our life for the next six months or so. Many trips to Baltimore for sure. Maybe we can squeeze a trip to Augusta in there for a visit to the Barna branch of our family.
Tired, thanks for listening. Rick
The research at John Hopkins
The research that Adele has been notified of is for B Cell Lymphoma patients that have had a relapse. When we talk with Dr Meade we will learn more about this research.
The first part of the research is only to identify those participants that have a good donor, using polymorphism testing. Adele is OK so far with this, will any donors be good donors - good enough to be allowed into the second half of the research - the actual BMT part?
A lot of things need to happen before she actually gets a BMT through this research group. I truly believe God will control whether Adele will be OK for this.
Adele is still in a "I never thought I would be looking at a BMT again. It was so horrible in what it did to me before. I am not sure if I can do that again." She also has said many times, that it will be a family decision.
Without a BMT - I believe chemo is the other way to go, although she had relapsed within 3 months before with just chemo. This time the BMT gave her 1 year. Lord give her 20 years this time.
I am starting to need more support - this past 2 1/2 years have been hard on us both. Thanks to all for keeping in touch this way. Rick
The first part of the research is only to identify those participants that have a good donor, using polymorphism testing. Adele is OK so far with this, will any donors be good donors - good enough to be allowed into the second half of the research - the actual BMT part?
A lot of things need to happen before she actually gets a BMT through this research group. I truly believe God will control whether Adele will be OK for this.
Adele is still in a "I never thought I would be looking at a BMT again. It was so horrible in what it did to me before. I am not sure if I can do that again." She also has said many times, that it will be a family decision.
Without a BMT - I believe chemo is the other way to go, although she had relapsed within 3 months before with just chemo. This time the BMT gave her 1 year. Lord give her 20 years this time.
I am starting to need more support - this past 2 1/2 years have been hard on us both. Thanks to all for keeping in touch this way. Rick
Tuesday, January 26, 2010
Evening has come to our household
We received an email from John Hopkins (Dr Meade) today. Adele was shocked by it but I thought it explained everything needed well.
Dr Meade agrees with Dr Balepur (Lancaster oncologist) that Adele probably should have a biopsy first. Dr M also asked her to read a research / study paper attached. If she was accepted in the study, she would have another BMT (bone marrow transplant) but a "mini transplant" this time, from a close relative. We are not sure who that might include, but it would be blood relative. These are also called "sister transplants" and we learned about them in December 2008 in our BMT class.
We need to make an appointment to see Dr M and talk about the study and Adele will have to make the decision whether she wants to do this or not. The study has a new way of choosing the donor for the transplant. It has to do with polymorphism testing and how stem cells bind to rituximab.
More as we know - Pray for PEACE
Dr Meade agrees with Dr Balepur (Lancaster oncologist) that Adele probably should have a biopsy first. Dr M also asked her to read a research / study paper attached. If she was accepted in the study, she would have another BMT (bone marrow transplant) but a "mini transplant" this time, from a close relative. We are not sure who that might include, but it would be blood relative. These are also called "sister transplants" and we learned about them in December 2008 in our BMT class.
We need to make an appointment to see Dr M and talk about the study and Adele will have to make the decision whether she wants to do this or not. The study has a new way of choosing the donor for the transplant. It has to do with polymorphism testing and how stem cells bind to rituximab.
More as we know - Pray for PEACE
We need to get people following this again
Last night was one call after another. Adele would not answer the phone at all - hardly even wanted to answer the text messages from Beth.
It was nice having our nephew Chris here Sunday night, he gave us a full rundown on what he is up to, and how he is looking for an intern position as one of the final fulfilments of college. Julie seemed to think she might be able to help - that would be really cool!
He helped Adele keep her mind off the appointment with Dr Balepur until it was time for it. As you see in the previous post - we had a "hot spot" discovery then. Cancer is probably back - next to John Hopkins and we both are shocked. Last night we both felt like our world had come crashing down. I think it was almost like the shock of hearing a close friend had passed. I could not keep from crying inside and choking up every time I thought about what we went through.
Adele has another appointment today and once the internet gets back again - we will find out if Dr Meade has emailed her.
Please keep up here and do not call - it is frustrating for me to intercept calls and have everyone keep asking for news and Adele laying down saying - no calls at all. We need peace and quiet for a few days I think.
It was nice having our nephew Chris here Sunday night, he gave us a full rundown on what he is up to, and how he is looking for an intern position as one of the final fulfilments of college. Julie seemed to think she might be able to help - that would be really cool!
He helped Adele keep her mind off the appointment with Dr Balepur until it was time for it. As you see in the previous post - we had a "hot spot" discovery then. Cancer is probably back - next to John Hopkins and we both are shocked. Last night we both felt like our world had come crashing down. I think it was almost like the shock of hearing a close friend had passed. I could not keep from crying inside and choking up every time I thought about what we went through.
Adele has another appointment today and once the internet gets back again - we will find out if Dr Meade has emailed her.
Please keep up here and do not call - it is frustrating for me to intercept calls and have everyone keep asking for news and Adele laying down saying - no calls at all. We need peace and quiet for a few days I think.
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