Sunday, February 28, 2010

The weekend

Saturday was an OK day for us, kind of. Adele's sister came and visited, then took us to lunch and did some shopping with her. Isaac's was the menu for lunch and then Hallmark and Cocalico Creek Gift Shop were for shopping.

Adele did get a bit upset by some pictures, just missing Ruby and somewhat angry about all that we go through on a daily basis now. We watched Olympics again and another movie.

Sunday after church, we went to Isaac's again with Mom & Dad this time. Right now we are watching a "Chick Flick", uh I am almost watching while she relaxes and watches. Anyway, today is a good day!

Monday is a PET scan for Adele which Yvonne is going to get her to, while I work. Then I will be able to get to the Health Campus and pick her up after the test.

Friday, February 26, 2010

Action - Adventure - Drama

That sums up our morning today. Action and adventure, just getting to Lancaster before 9 am and keeping the crazy drivers away. Only go to see one spin out, right after it happened, he was trying to back up, but I am sure he would fail miserably.

Action at the SS office, while we finished applying for Adele's SS retirement.

Drama at Dr Balepur's, right around the corner from SS, and they called Adele and said come early. Drama as Dr Balepur tried to get someone on the phone from John Hopkins. Drama as Dr Balepur told us the needle biopsy was negative - did they biopsy the wrong lymph node, did it cure itself (if it did God was behind it for sure - yes we are feeling the prayers everyday). Settled finally when he decided to do another PET scan next week, and compare the 1/21 scan with the 3/1 scan.

Joy as I could drive Adele back home and be with her all weekend again. Wonder as we contemplate what will happen next week.

Very emotional day so far and we were back before noon, so plenty of the day left to experience.

Thank You Lord, for everything You have done today and everything You will do tomorrow!

Thursday, February 25, 2010

OK Already - The prayers are working

Wow what another day of way too many things happening. Adele had a haircut today, but bumped into the curb and killed a front tire. She called me and I got it changed and then we took the car to the garage to get it done.

Other things that happened were:

    1. Adele contacted the National Cancer Institute (NCI) and got plenty of great help there.
    2. Lucy from the insurance company called and told us to disregard (hallelujah) the refusal letter we will get. They have OK'd JH new request for a "Standard of Care" support.
    3. The garage called and we went back for the car.
    4. JH called, and Holly told us how they plan on getting the 4 donors to get their blood work to JH. Siblings first - then children.
    5. Adele pooped out with, oh my such a long day - and I was whooping it up Praising God for His answer to our prayers. She got up and joined in with me.
    6. I am warming supper and some of the small group are to be here tonight, they might watch us eat!
    7. Tomorrow is a repeat!

I am so happy for all that God has done for us today and in wonder at what He will do for us tomorrow!

Thank you for all the prayers!

Wednesday, February 24, 2010

Wed Evening

Wow! This day went from one end of emotion to the other. This morning we woke and were again confronted with our indecision about what to do next. Fear of the unknown, and worry about whether Adele will get the treatment she needs, started off our day poorly.

We go to LGH and had her muga scan that she needs before chemo starts. My son Tom had decided to take off work, and was at our house, while we were in the hospital. He text messaged us and asked "Where are you right now". Ha, we were 1/2 hour from finishing the scan and I let him know, then found out he was in our garage at home. We met at Isaac's in Lancaster and had a late lunch with him. It was really good to get another opinion, and just talk about everything with him. He came home with us, and left after 5 or so.

Then at 6:30, Martha arrived bearing many happiness gifts from the teachers at Elanco. Perfect time for them all, and so nice of them to do this for her. W@hile talking and learning about our trials in the past week, she helped quite a bit. She was the one that saw the original research that JH wanted to do, was sponsored by the NCI, which is where our JH doctor asked us to call and get an appointment.

I think we will call NCI and get that appointment and see what happens. Like he said, it is always good to have a plan B ready.

Friends, family, just the ticket for a down day, and get us up again. Tomorrow is Adele's haircut day, that is everything she has to do, nothing else. She will enjoy opening gifts for a few days also.

Thanks to all who responded to my last posts, we are thinking more clearly and hope to get started on treatment soon.

Wednesday at LGH

We are here for Adele's Muga (heart) scan. Long and hard day so far - slept in until 9 am and have been agonizing about what to do next. Hopefully we can get some company in tonight.

Pray for us, please, we are both exhausted and worn down by this experience.

Rick

Tuesday, February 23, 2010

Help

It's 11 pm and we are crying each other to sleep, if that's possible. With the news today of the insurance company declining to cover her treatment, Adele feels like she has been given a death sentence.

This is our lowest night ever - in over 40 years together.

Help us God

How do we even start getting ready to go to the National Cancer Institute in Bethesda, MD? Can they help us?

Tuesday Night

OK - the doctor from John Hopkins called and is very upset that our insurance looks to be calling all mini-transplants, experimental. And of course, they do not cover experimental transplants. He explained that a full (or high dosage chemo) transplant would not be good for a second time, as rate of death goes up dramatically.

Pray for Adele and I that she gets the mini transplant she needs. Our doctor went so far as to recommend that we look into the "National Cancer Institute" and get an appointment to see if they have any "Clinical Trials" that would be applicable to Adele. He says always keep an option "B", but we know we both want the option A @ Hopkins.

Chemo will start Friday anyway, as it needs to be done now, his words, and we will need to go to Bethesda, Md for the appointment. If there is a trial, it could be free for her, then who needs the insurance. Although I am sure there would be some type of adjustment in the treatment - depending on the trial.

Pray for the Insurance Company to come through!

Tuesday - What a Day!

Today was to be our movie day. Adele did not feel up to it - and to be honest, I am not excited about the movie choice anyway.

This morning, John Hopkins called to say that the insurance company has decided to refuse the transplant on the basis it is experimental. The part about how they choose the donor is, so they called the entire process experimental. Patrice at JH is working on getting it resubmitted, probably as a standard transplant, not as a research or experimental transplant. Pray for the insurance to allow the transplant!

I have had quite an education on Social Security and all of its quirks.

We also had to get an account setup for Adele to have the PSERS direct rollover $$ go into. With some help from Vanguard, we were able to get that done, and shy of one small form to have them fill out, everything is ready there. We are ready in good time for the March 31st appointment with PSERS.

Chemo will start Friday, and we will start that day with a Social Security appointment.

Pray with us and give Thanks for all that the Lord has done today, and all that He will do tomorrow.

The highs and lows on Monday


Monday was a roller coaster day again. Adele & I decided to get out and do something, to get her out of the house, before she is bound indoors from fear of infection. We love the pictures Julie keeps sending of Ruby, fashionable girl that she is. They help so much when we get them, Adele loves to just coo over each for a minute or two and look at every part of the picture. This is Monday's picture from Facebook!

She made an appointment for Dr Balepur on Friday, after which he will probably send her to LGH and the start of chemo. Dr B also scheduled a MUGA scan at LGH on Wed, cardiology scan. Other things this week include a dental appt on Tues, a haircut on Thursday, Social Security appt on Fri morning right before the doctor's visit. Oh, we are still trying to decide whether to try for the disability or not - as I just found out that it might get her on Medicare sooner than 65 and that would be disastrous for my health plans.

We stopped by the doctor's office and picked up papers, went to Boscov's and PJ shopped, I got some K-Kups and a new knife for veges (all of $2.99 on sale). Then home and lunch, after which Adele went upstairs to sleep a while, and I went to Weis to get groceries. At
Weis, I had a customer call, and decided to go to Lebanon Mon afternoon. Ran to Lebanon and fixed the problem, modem was too old for Win 7, and while I was driving back, I received a call from John Hopkins Hospital.

It seems that, our insurance is balking at covering the stem cell transplant, because of the research portion of it. They are calling it experimental, and do not want to pay for any of it. The nurse at JH that I talked with (part of Dr Meade's team) said she had many ways to convince them, not to worry. I suppose we could always ask for a "normal" sister transplant and be within the insurance companies standards. It will work out, just another way to get us both upset and more depressed. It hit Adele had, and she was quiet for the entire evening.

Tuesday, we plan on getting to the movies in the morning and having lunch at Isaac's in Lititz. That should be a good diversion, and then I can get back and work for the rest of the day.

Lately I cannot sleep well, even with ambien. I keep running through all the scenarios of her retirement plan and what we should do with the different plans they offer. Spreadsheets, checking out the different funds to invest in, etc. Sometimes it is just so much to think about, along with Social Security and whether I will have her with me in 5 years or not. I need to leave it up to the Lord, He will take care of us, He is carrying both of us on His shoulders right now.

Thank You Lord, for what You have done for us today, and what You will do for us tomorrow!

Sunday, February 21, 2010

Sunday afternoon and the Doctor emails us

Our oncologist here in Lancaster emailed Adele this afternoon and said he expects the biopsy results this week, and would like to see Adele Friday afternoon. He expects to admit her to Lanc General, on 8 Lime, for the first chemo round this next weekend. He wants to get this moving, hurrah!

Our doctor in John Hopkins also emailed Adele this weekend with a list of meds that they gave her in the hospital. That will help us get working on the disability report for Social Security.

Oh, our SS appt is Friday also. Guess that will be cancelled or fit in before the doctor's appt.

Talked with Julie and Ruby this afternoon, nice to hear both of them. Eric is wiped out after a long last week with Bone Dry and a start for Penn Roofing in the same week. A sole proprietor is born yet again! Good luck to my favorite Son-in-Law! Oh yeah, my only son-in-law, but still favorite!

Adele is happy Dr Balepur wants to get going now, the sooner the better. Waiting has been very hard. Thank You Lord for helping us get this started.

Saturday, February 20, 2010

A Great Friday

Friday was a doctor appt for me which I almost forgot, and then a delivery to Lebanon area. I got back by 11:30 or so and found Adele already doing household chores and eating. We had lunch, where she forced a 1/2 sandwich and had yogurt. She is a bit on the light side now and says she wants to gain weight now to build up for later, where she might not feel so much like eating, and possibly will need boost or something like that.

We had a quiet afternoon, and she had a shower (had to wait 24 hours because of yesterday's bleeding) around 3, and then we drove to Harrisburg for a G-Kids visit. We went to Mason's Taekwondo and watched him perform all his moves. Video at YouTube - rstauffer43's Channel so you can all see how he did.

We got home a bit late, but Adele wanted to relax with the Olympics, so we watched them until about 11 pm. She is starting on a new med, that is supposed to help her sleep, and it seems to work well. A mood stabilizer, as Dr Camerino put it. One a day, 3 hours before bed, so it is easy to get the right dosage. It is 9 AM Saturday and she is still sleeping. Just checked her and she is still out for the count. Great to be able to get a full night's sleep after so many restless nights that she has had. This could do wonders for her.

We also (again) talked about trying to see more of God's planning in everything that happens. She is getting very anxious every time something happens that she has not thought about, like the bleeding during the biopsy. She went on and on about how disappointed she was in herself (for taking aspirin) etc, etc. Friday we talked about seeing the good points in everything and she seems to be much better about the process on Thursday.

I know God's hand is in everything we are doing and helping guide the doctors and nurses we meet as we journey this path. He has never left us, and will help us get this done. Thanks be to the Lord for His help. I pray constantly "Thank You Lord for what You have done today, and Thank You Lord for what You will do tomorrow!" I am never sure how a day will be, tests made or not made, diagnosis - good or bad, He is helping us in all of this.

Pray for Peace as always, and a smooth week next week. Not much in the doctors visits next week. G-Kids here Friday night and Saturday, with them needing to be home Sat evening for Sunday church. We think the Science Factory would be a good field trip for them.

Friday, February 19, 2010

Thursday 2/18/10

Adele slept in this morning, knowing today was biopsy day. We left for the Lanc Gen Hospital around 1:20 and arrived on time for her appointment. They took her back about 1/2 an hour later.

I read and waited for them to finish. Then the nurse came up and got me, and was a bit distracted when I asked how it went. It seems Adele was not to use aspirin, and had 2 on Wednesday, and bled quite a bit. The doctor was not even going to do the biopsy once he found out she had aspirin. He went ahead and stopped after he got some small samples. He did not like working with ultra sound, while she bled from the pin prick of a needle they used. He used the small needle, instead of the normal needle.

Now, if they got enough tissue, we are done with the biopsy. If not, ?surgery? might be the way to do it. The biggest problem, is the nurse practitioner told us the sample would be ready on next Monday. The doctor told her it will take a week. The same nurse practitioner did not say anything about aspirin or other drugs to avoid before the biopsy. Isn't it great when you get good news that things will go fast, and then get pulled down by the real doctor when he corrects the expectations. Adele was not happy after the biopsy!

Of course, because she was a bleeder, she had to go to the MOPU are and was monitored by a nurse for 1 1/2 - 2 hours. We left the house at 1:20 and got back around 6 PM. Long day for her, and many disappointments. I was then hit by her feelings and got depressed myself.

Today will be better! Adele is planning a shopping trip, with me saying, you go girl! Spend, spend, spend and get what you need, stop denying yourself.

Peace until the next step starts - Thanks to the Lord for everything He has done for us!

Tuesday, February 16, 2010

Consult done

We had her radiology consult today and have a needle biopsy scheduled for Thursday PM.

We are both happy to get this done ASAP and get the results now. Adele will call Dr Balepur tomorrow and ask about whether an appt should be made for next week, instead of waiting until March 1st.

A good day - ending it with cheese and crackers - and calling people that provided meals the past two weeks.

Oh, I got a chance this morning to talk with Sue up in Lebanon. She is looking great and is still going to John Hopkins for chemo and radiation. Keep her in your prayers also.

Praise the Lord for good days like this.

Monday, February 15, 2010

Monday evening

Today we went to the Oncologist and filled out all kinds of paper work for his new office. We were there from 10:45 until after noontime. Went to lunch at Oregon Dairy and then on to the Health Campus for blood work. After that we stopped with Mom & Dad at Luther Acres. Mom is getting around quite a bit better. The hamstring is healing.

Adele just needed a bit of help today, and did great with everything that was tossed at her. Now we are on to Lancaster General tomorrow and the consult for a needle biopsy later this week or next. Dr Balepur wants to get moving on this and we sure concur. Once the biopsy is done, its on to chemo and getting this cancer in remission, so we can get to start at John Hopkins.

A good day for all. Thank You Lord!

Sunday and into Monday

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!

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.

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

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

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:

    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

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