Sunday was a good day all in all. We spent time watching the Olympics - having used the DVR to record everything. Nice to be able to zoom through commercials and sports that do not interest us, yet see everything.
Adele slept 3 hours in the afternoon - since she had another bad night of sleep Sat night. She has been taking sleeping pills to relax, and I suggested that she only use them for sleep - so when she asked about it around 1:30PM I said something about needing to use them for sleeping again. She took the hint and after taking one - went to bed and had a sound sleep.
Today (Monday) we go to Dr Balepur's new offices and get started on the adventure. He will need to schedule a biopsy for her, and check on what else to get started with. I am sure the chemo will only come once the biopsy is done. A bit of an anxiety problem again, she thinks too far out sometimes, and it scares her (Thank the Lord I can see today clearly and can leave the future up to Him). She needed yet another Clonazepam to calm down - I am sure it is mostly mental, as she can calm down immediately once she takes it, I don't think it works that fast.
I'll try to post more as we know what is happening.
Still need Peace in her life, and the ability to see NOW and not worry so much about the future. I pray for that every day - Thank You Lord!
Monday, February 15, 2010
Saturday, February 13, 2010
Wed throught Sat
This week was filled with trying to get things going. SS, PSERS, the PET scan report to JH and much more. Even trying to reach our oncologist was hampered this week, as he was moving into new offices, and the storms last weekend and Tues and Wed kept many home while they dug out.
I think the was about 24 + inches for the first storm, and another 20 - 24" this past Wednesday. It only stopped about 5 PM - what a back breaker. I am never doing that again with this little snow thrower.
Friday was a bad day, with Adele again wanting, but knowing the doctor says she should not have, the anti-anxiety medicine. I told her I had thrown them away, as the doctor Tues said we should. She ended up calling him and getting him to prescribe yet another one.
The pills are as needed, and she took the max in an 8 or 10 hour period.
Of course, that turned out bad, with a major anxiety attack this morning (Saturday) and a 6 hour period of me again holding and comforting her, telling her she is OK. She just took a sleeping pill and is starting to see double, so she is closing one eye to get past that. Of course, I decided early today, the dinner dance we were to attend is not something she needs to be at. Wish I could have someone use my space for us, hate to throw away the $75.
It's 4:30 pm and I think I can finally let her alone for awhile. Now to get a bath and shave finally.
Peace - Pray hard for Peace.
I think the was about 24 + inches for the first storm, and another 20 - 24" this past Wednesday. It only stopped about 5 PM - what a back breaker. I am never doing that again with this little snow thrower.
Friday was a bad day, with Adele again wanting, but knowing the doctor says she should not have, the anti-anxiety medicine. I told her I had thrown them away, as the doctor Tues said we should. She ended up calling him and getting him to prescribe yet another one.
The pills are as needed, and she took the max in an 8 or 10 hour period.
Of course, that turned out bad, with a major anxiety attack this morning (Saturday) and a 6 hour period of me again holding and comforting her, telling her she is OK. She just took a sleeping pill and is starting to see double, so she is closing one eye to get past that. Of course, I decided early today, the dinner dance we were to attend is not something she needs to be at. Wish I could have someone use my space for us, hate to throw away the $75.
It's 4:30 pm and I think I can finally let her alone for awhile. Now to get a bath and shave finally.
Peace - Pray hard for Peace.
Tuesday, February 9, 2010
Tuesday and another doctor appointment
Saturday was so, so with me blowing the 18" away, while Adele tried to stay busy inside.
Sunday we went to church, sat in the balcony (to stay away from all the "Oh Adele, How are you doing?" people) and came home to enjoy the day. We did make the decision to stay home for the Super Bowl, and since we both were drained from the last week, a good decision.
Monday was a doctor appt for her, and I left her drive there. Gave her a chance to be normal for awhile, card shopping and all after the appt. Jim dropped off a meal, which we will use Tuesday night, as the steaks are already defrosted and ready for tonight.
Tuesday - and yet another doctor to see this morning. Adele is figuring out the disability form for Social Security. They want all the tests, diagnoses, doctors treating her, dates last worked, etc. That will take an hour or so to find and document. From what I see, Social Security's disability definition, fits her situation well. She should have no problem getting that designation. That will put her as retiring at 66 instead of 62 for the SS office and check. About 50% more in monthly checks.
We are still waiting on the Oncologist to get to us about when we will start the process here in Lancaster. The biopsy will be first and then chemo for 3 rounds. Then we can get to John Hopkins, renting a place to stay there, and further testing and treatments.
As before, the waiting to get going is one of the worst parts of this. We do have plenty of things to do, that can fill those gaps. It is just not a good time, waiting for everything to start.
Pray again for Peace. God takes care of the rest - we see Him working in all of this. No surprise there, just Joy when we see His input to Adele's problems.
Thanks - Rick
Sunday we went to church, sat in the balcony (to stay away from all the "Oh Adele, How are you doing?" people) and came home to enjoy the day. We did make the decision to stay home for the Super Bowl, and since we both were drained from the last week, a good decision.
Monday was a doctor appt for her, and I left her drive there. Gave her a chance to be normal for awhile, card shopping and all after the appt. Jim dropped off a meal, which we will use Tuesday night, as the steaks are already defrosted and ready for tonight.
Tuesday - and yet another doctor to see this morning. Adele is figuring out the disability form for Social Security. They want all the tests, diagnoses, doctors treating her, dates last worked, etc. That will take an hour or so to find and document. From what I see, Social Security's disability definition, fits her situation well. She should have no problem getting that designation. That will put her as retiring at 66 instead of 62 for the SS office and check. About 50% more in monthly checks.
We are still waiting on the Oncologist to get to us about when we will start the process here in Lancaster. The biopsy will be first and then chemo for 3 rounds. Then we can get to John Hopkins, renting a place to stay there, and further testing and treatments.
As before, the waiting to get going is one of the worst parts of this. We do have plenty of things to do, that can fill those gaps. It is just not a good time, waiting for everything to start.
Pray again for Peace. God takes care of the rest - we see Him working in all of this. No surprise there, just Joy when we see His input to Adele's problems.
Thanks - Rick
Friday, February 5, 2010
Friday night waiting for the Big Snow
OK, I hear a snow mobile out on the street already, guess there is more there than I think.
Anyway, today has been a good, but exhausting day. I did a bit of work for Molly and Larry - Outlook kills the file! But Rick saves the day. Stopped in at PA Breast Cancer Coalition to answer some "rick questions" - glad to be of service there. Then after the bank and food shopping, back to home with Adele.
She helped me with the food shopping today, and then we came back for lunch and had a great talk. Seems she has decided to fight, and I was waiting for her to let me know. Now I do know and am ready for the long fight.
We talked about her needing to contact PSERS and probably look into Social Security, since she is 62 in May. The web site did not work for SS and she called them, found out she might (just might, say maybe 50/50) have a shot a a disability SS payment. She plans on checking into that and has an appointment with the SS office in Lancaster later this month.
At that point we both needed to lay down and just relax for awhile. Watched Amelia after a great steak burger supper (Thanks Eric and Julie) and she is reading while I watch AFV. Wonderful day, great snow storm coming tonight, and plenty of food and supplies for the weekend.
Meds are working wonderfully since the change a week and a half ago.
I will probably post again Monday - Thanks Rick
Anyway, today has been a good, but exhausting day. I did a bit of work for Molly and Larry - Outlook kills the file! But Rick saves the day. Stopped in at PA Breast Cancer Coalition to answer some "rick questions" - glad to be of service there. Then after the bank and food shopping, back to home with Adele.
She helped me with the food shopping today, and then we came back for lunch and had a great talk. Seems she has decided to fight, and I was waiting for her to let me know. Now I do know and am ready for the long fight.
We talked about her needing to contact PSERS and probably look into Social Security, since she is 62 in May. The web site did not work for SS and she called them, found out she might (just might, say maybe 50/50) have a shot a a disability SS payment. She plans on checking into that and has an appointment with the SS office in Lancaster later this month.
At that point we both needed to lay down and just relax for awhile. Watched Amelia after a great steak burger supper (Thanks Eric and Julie) and she is reading while I watch AFV. Wonderful day, great snow storm coming tonight, and plenty of food and supplies for the weekend.
Meds are working wonderfully since the change a week and a half ago.
I will probably post again Monday - Thanks Rick
Thursday, February 4, 2010
John Hopkins Visit with Dr Meade
Today, Thursday, Jan 4th, 2010, we met with our oncologist Dr Meade at John Hopkins Research Hospital. He recommended a "Mini" bone Marrow Transplant, using either her sister, or our children's marrow. Other options do not really exist for us at this time.
Without going into too much detail, we have it all, no need or want to rehash it. I will try to explain what will happen, should Adele decide to go ahead with his recommendation.
Duration, from start to end, will be 5 - 6 months until she is home and recovering here.
That time period includes:
This will bring us home in August or later this summer, so we will need much support and prayers during this time. One thought is that I will need to keep working, and as they will have Adele as an outpatient, we will need "Adele Sitters" for 3 days a week. Sitters are in charge of getting her to IPOP, cooking, bed making, and laughter making. If you think you could help during say May through August any time, I would be glad to have the help. We do not know what strength she will have, maybe the need to push a wheelchair will be part of this?
Of course, more later.
Tonight is cuddling, movie and junk food.
Thanks - Rick
Without going into too much detail, we have it all, no need or want to rehash it. I will try to explain what will happen, should Adele decide to go ahead with his recommendation.
Duration, from start to end, will be 5 - 6 months until she is home and recovering here.
That time period includes:
- A biopsy of the cancer is needed, here in Lancaster through a surgeon, setup by Dr Balepur's office.
Next, there will be 3 rounds of chemo, three weeks apart, for 9 weeks time span.
During that chemo, blood tests will have to be done by potential donors, listed above. John Hopkins will Fed Ex them each the necessary items, they will need to get a local lab to do the blood draws, and the results and/or blood will need to be returned to John Hopkins ASAP.
There will then be testing done at John Hopkins on Adele.
The next step will be more chemo at John Hopkins, to prepare her for the stem cell transplant.
The transplant is next, done within two or so hours of the bone marrow extraction from her donor (at John Hopkins).
After the transplant, she will have 4 treatments of Rituxin to attack the cancer using the donor's stem cells.
Then John Hopkins will have Adele come to the Outpatient clinic (IPOP) probably every day, for 30 to 60 days, before allowing her to come home.
This will bring us home in August or later this summer, so we will need much support and prayers during this time. One thought is that I will need to keep working, and as they will have Adele as an outpatient, we will need "Adele Sitters" for 3 days a week. Sitters are in charge of getting her to IPOP, cooking, bed making, and laughter making. If you think you could help during say May through August any time, I would be glad to have the help. We do not know what strength she will have, maybe the need to push a wheelchair will be part of this?
Of course, more later.
Tonight is cuddling, movie and junk food.
Thanks - Rick
Wednesday, February 3, 2010
It's Wednesday already!
When we are having good days, one after another, time flies. Adele is finally back, although she does leave once in awhile - like Tuesday afternoon, but she comes back much quicker. It is wonderful to be able to talk with her again, and know she is hearing what I am saying without fear clouding her thoughts.
We had friends over last night for coffee and cookies - and of course show off our Ruby movies on youtube. Oh sorry - http://www.youtube.com/jooliepoison or http://www.youtube.com/rstauffer43 ..
Adele had a great time and really picked up out of her mood just getting ready for company. We aren't ready for that every other day, but once a week, it gets her thinking of other things. Of course, it helps to have this blog, and then no one has to talk about health problems while they are here.
Today should be good, although some thoughts of tomorrow at John Hopkins are intruding into my head, and I am sure she will think about it all day. Tomorrow, with Dr Meade, we should get almost all of the questions answered, and progress in the fight can begin again.
If we have anything to post while at John Hopkins, it will be posted. Thanks for all the help in prayer and everything else. Pray for Jean also this week - serotonin levels?
Love ya all - Rick
We had friends over last night for coffee and cookies - and of course show off our Ruby movies on youtube. Oh sorry - http://www.youtube.com/jooliepoison or http://www.youtube.com/rstauffer43 ..
Adele had a great time and really picked up out of her mood just getting ready for company. We aren't ready for that every other day, but once a week, it gets her thinking of other things. Of course, it helps to have this blog, and then no one has to talk about health problems while they are here.
Today should be good, although some thoughts of tomorrow at John Hopkins are intruding into my head, and I am sure she will think about it all day. Tomorrow, with Dr Meade, we should get almost all of the questions answered, and progress in the fight can begin again.
If we have anything to post while at John Hopkins, it will be posted. Thanks for all the help in prayer and everything else. Pray for Jean also this week - serotonin levels?
Love ya all - Rick
Monday, February 1, 2010
The weekend
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
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
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