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
Friday, January 29, 2010
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.
Monday, January 25, 2010
Monday Jan 25, 2010
Adele was worried all weekend about our appointment today - with Dr B, the oncologist. Rightfully so, it turns out. The PET scan from last Thursday showed three "hot spots". 1 under her arm and two in her neck. Oh Lord, let them be some kind of false positive!
We picked up the PET scan on CD in preparation for a John Hopkins trip to Dr Meade. Dr B in Lancaster thinks a biopsy is next, but defers to Dr Meade, as he is the head of the team working on Adele.
Once the next step and results are done, I will post more. All I want to do is eat chips and ice cream with a bit of whiskey to finish them off.
Stress is a BIG factor in our lives. Pray for release from that stress.
We picked up the PET scan on CD in preparation for a John Hopkins trip to Dr Meade. Dr B in Lancaster thinks a biopsy is next, but defers to Dr Meade, as he is the head of the team working on Adele.
Once the next step and results are done, I will post more. All I want to do is eat chips and ice cream with a bit of whiskey to finish them off.
Stress is a BIG factor in our lives. Pray for release from that stress.
Thursday, January 21, 2010
Jan 21, 2010
Today is 1 Year plus a day since Adele's autologous stem cell transplant at John Hopkins!!!
Last week on the 14th we had our 1 year checkup in Baltimore. Blood work, CAT scan, bone marrow extraction, 4 of 5 immunizations, full physical and head doctor's appointment were all done - in that order - by 2:30 PM. We had arrived at 8:20, just in time for the 8:30 appointment.
Blood work was good, showing an good increase of platelets, some liver damage (we basically knew that), elevated thyroid numbers and all else was good. The CAT scan showed a return to normal size for the groin lymph nodes, while a question arose about one under her arm. The bone marrow was clean, no cancer there.
During the head doc's appointment, we heard about all of that, with a caveat about the enlarged lymph node under the arm. He said he wanted to hold back his final opinion until he saw the actual CAT scan, not just the lab tech's report. He also said he might consider a PET scan if he wanted to see the area clearer. As I understand, the CAT and PET scans together give a clearer picture of what is going on. Not that either is very clear. They are talking about a 2 mm increased, while the CAT scan only takes a picture every 3 mm. He also talked about the liver damage - never drink again (like that is a big problem with Adele - she only thinks about a drink once in a blue moon). He also said there could be thyroid damage, something called a "lazy thyroid", which could cause most of her symptoms lingering with her.
Today we are at the Lancaster Health Campus getting the PET scan and then back to Ephrata for a Dr C appointment and discussion about the thyroid - most likely tests will be done to see what is going on.
After all the tests are in - I will post something about how the results looked.
Pray for Peace in Adele
Pray for Haiti and all the families that lost so much
Thank you - Rick
Last week on the 14th we had our 1 year checkup in Baltimore. Blood work, CAT scan, bone marrow extraction, 4 of 5 immunizations, full physical and head doctor's appointment were all done - in that order - by 2:30 PM. We had arrived at 8:20, just in time for the 8:30 appointment.
Blood work was good, showing an good increase of platelets, some liver damage (we basically knew that), elevated thyroid numbers and all else was good. The CAT scan showed a return to normal size for the groin lymph nodes, while a question arose about one under her arm. The bone marrow was clean, no cancer there.
During the head doc's appointment, we heard about all of that, with a caveat about the enlarged lymph node under the arm. He said he wanted to hold back his final opinion until he saw the actual CAT scan, not just the lab tech's report. He also said he might consider a PET scan if he wanted to see the area clearer. As I understand, the CAT and PET scans together give a clearer picture of what is going on. Not that either is very clear. They are talking about a 2 mm increased, while the CAT scan only takes a picture every 3 mm. He also talked about the liver damage - never drink again (like that is a big problem with Adele - she only thinks about a drink once in a blue moon). He also said there could be thyroid damage, something called a "lazy thyroid", which could cause most of her symptoms lingering with her.
Today we are at the Lancaster Health Campus getting the PET scan and then back to Ephrata for a Dr C appointment and discussion about the thyroid - most likely tests will be done to see what is going on.
After all the tests are in - I will post something about how the results looked.
Pray for Peace in Adele
Pray for Haiti and all the families that lost so much
Thank you - Rick
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