We were lucky to have all the girls and all the grandchildren over for Father's Day. The weather was perfect and all the babies are just gorgeous.
Definately need a bigger house for all the baby gear that's for sure. Jan and I stayed at the house while the girls took the boat out for awhile which gave Jan (and I) time to rest up. Dinner was great - everyone brought something and of course had more food than we needed!
On Monday Jan was experiencing some shortness of breath so had to go to the ER - the Dr's were concerned about blood clots. The CT scan revealed no blood clots though so we were lucky. They had discussed admitting him and not doing the radiation, but we explained as nicely as possible that Jan has much better care at home between the 3 girls and I than he could ever have at the hospital. We are simply not interested in an inpatient stay right now and will do whatever it takes to avoid it in the future. We need to stay on track with the radiation because if they stop it they most likely will not restart it.
So we got our way and had the radiation and off we went. Last night was hard for Jan as the shortness of breath is increasing- even short exertions of energy cause it. Trying to come up with a plan for that today. The books all say it's from the radiation and should let up in a few days.
Thanks for all the help this week to Mike and Michele and Andrew with the yard and the bushes. Michael is so much like my Dad-mostly noted when he is doing physical work. It's really funny. He even talks like him when he's working hard!! I remember my Dad cutting back the rose bushes almost to the ground every year -totally against the book - but he always had the nicest roses on the block. Michael was in the same mode while trimming the hedges here. Had to make him stop at 1030pm..
So today will be a quiet one here - headed out to Ann Arbor this afternoon for more blood work and radiation, but plan on watching a little golf and making a big pot of soup.
Will keep you posted.
Tuesday, June 22, 2010
Saturday, June 19, 2010
HOME
So far so good! The radiation and the chemo pump are working ok. Jan's energy level is low, but he just keeps on trying to do things to stay busy.
We have the weekend off from going to Ann Arbor. Since the chemo is in the pump attachment that he wears it is administered 24/7 so we don't need to do anything with that. The radiation is not done on the weekends.
The drive to Ann Arbor is just over an hour in the late afternoons, we are attempting to move the time up a little to avoid the traffic.
Looking forward to a quiet weekend at home. Fathers Day is tomorrow - looks like we are doing dinner here. I am sure the girls are a little apprehensive about tomorrow but should be ok.
The heat is tough on Jan right now - good thing we don't live in AZ, even that "dry" desert heat would be hard right now.
Ordered an arm cover for the picc line so it doesn't get wet during showers - they even said you could go swimming in it. What would you do with the pump?? Not sure I understand that yet, but this is a constant learning process that's for sure. Still looking for an effective hook/hanger for the shower too.
Jan's appetite is certainly down. When he eats his stomach is upset for awhile afterward so he is going to need to eat more often with less at each serving I guess. The soup, fruit, fish and salad menu is working ok.
Will keep you all updated but at this point no news is good news!!
Have a great weekend.
We have the weekend off from going to Ann Arbor. Since the chemo is in the pump attachment that he wears it is administered 24/7 so we don't need to do anything with that. The radiation is not done on the weekends.
The drive to Ann Arbor is just over an hour in the late afternoons, we are attempting to move the time up a little to avoid the traffic.
Looking forward to a quiet weekend at home. Fathers Day is tomorrow - looks like we are doing dinner here. I am sure the girls are a little apprehensive about tomorrow but should be ok.
The heat is tough on Jan right now - good thing we don't live in AZ, even that "dry" desert heat would be hard right now.
Ordered an arm cover for the picc line so it doesn't get wet during showers - they even said you could go swimming in it. What would you do with the pump?? Not sure I understand that yet, but this is a constant learning process that's for sure. Still looking for an effective hook/hanger for the shower too.
Jan's appetite is certainly down. When he eats his stomach is upset for awhile afterward so he is going to need to eat more often with less at each serving I guess. The soup, fruit, fish and salad menu is working ok.
Will keep you all updated but at this point no news is good news!!
Have a great weekend.
Thursday, June 17, 2010
Ann Arbor, Mi
So we are on track with the program now. Got the chemo 5FU running in an IV connected to the heart with 24 hour infusion. That means yes he is wearing a line with a cassette that delivers the medicine 24 hrs a day. Pretty inconvenient - trying to figure out the shower process right now.BUT not feeling too bad.
Had the radiation treatment as well. The plan says we go to Ann Arbor everyday at 430 for this procedure. Also makes him tired.
When looking at Jan you would hardly know he's sick. He looks great and the positive mental attitude is helping alot.
I had an issue with oncology yesterday - over $36.00- started tearing up and then the stupid clerk raised his voice to me. That was the beginning of a complete onslaught of tears for me. Boy was he sorry he said anything!! It took 5 nurses working on the file to get my way..and even then we have to wait until next week for the nurse manager to fix it.
You would think that the $60,000 per month for chemo/radiation treatments would be enough, but the $36.00 just sent me over the edge.
Hopefully the VA will get this taken care of.
So the schedule is everyday at 430 and two days a week at 330. Not bad avoids rush hour traffic and hopefully will allow a little time on the boat in the early afternoon or early evening.
As far as company is concerned that is really hit or miss right now. As I mentioned to someone this morning I am now the official "bouncer" at the door. We have to be extremely careful of germs/bacteria and if anyone is sick or has been around anyone who is sick do not come visit! Between day 8-15 if Jan even gets a cold it could stop everything.
Looking for some good soup recipes. Got the chowder book out and away we go with all new menus. Soup, salad and fruits are the primary diet right now. They even recommend strawberry milkshakes which just happen to be Jan's favorites. Will keep you posted, thanks for all the positive messages...
Had the radiation treatment as well. The plan says we go to Ann Arbor everyday at 430 for this procedure. Also makes him tired.
When looking at Jan you would hardly know he's sick. He looks great and the positive mental attitude is helping alot.
I had an issue with oncology yesterday - over $36.00- started tearing up and then the stupid clerk raised his voice to me. That was the beginning of a complete onslaught of tears for me. Boy was he sorry he said anything!! It took 5 nurses working on the file to get my way..and even then we have to wait until next week for the nurse manager to fix it.
You would think that the $60,000 per month for chemo/radiation treatments would be enough, but the $36.00 just sent me over the edge.
Hopefully the VA will get this taken care of.
So the schedule is everyday at 430 and two days a week at 330. Not bad avoids rush hour traffic and hopefully will allow a little time on the boat in the early afternoon or early evening.
As far as company is concerned that is really hit or miss right now. As I mentioned to someone this morning I am now the official "bouncer" at the door. We have to be extremely careful of germs/bacteria and if anyone is sick or has been around anyone who is sick do not come visit! Between day 8-15 if Jan even gets a cold it could stop everything.
Looking for some good soup recipes. Got the chowder book out and away we go with all new menus. Soup, salad and fruits are the primary diet right now. They even recommend strawberry milkshakes which just happen to be Jan's favorites. Will keep you posted, thanks for all the positive messages...
Saturday, June 5, 2010
HOME
So we have made it home safely. We came home to a wonderful surprise- our boat is in the water. A very close group of friends got together and put on a new engine and powerwashed the very dirty boat. Also had a nice bottle of wine and an appetizer tray waiting for our arrival!!
We were so amazed at the caring and loving friends that made this possible that once again we were both in tears. Thank you is just not enough. The card said they felt the best medicine for Jan is his boat in the water and that is so very true. We appreciate it more than I can say.
The ride home was uneventful thankfully- the new car now has 4500 miles and runs like a top. Unfortunately we didn't get to Dallas but hopefully we will see them soon- on our boat!!
Next week we are back to Ann Arbor - let's get this started - as the song says.
I will post more often, the last few days have been very difficult but we will make it through this much easier now that we are home to the greatest support system imagineable..I am now able to speak on the phone again without crying
Thanks and love to everyone.
We were so amazed at the caring and loving friends that made this possible that once again we were both in tears. Thank you is just not enough. The card said they felt the best medicine for Jan is his boat in the water and that is so very true. We appreciate it more than I can say.
The ride home was uneventful thankfully- the new car now has 4500 miles and runs like a top. Unfortunately we didn't get to Dallas but hopefully we will see them soon- on our boat!!
Next week we are back to Ann Arbor - let's get this started - as the song says.
I will post more often, the last few days have been very difficult but we will make it through this much easier now that we are home to the greatest support system imagineable..I am now able to speak on the phone again without crying
Thanks and love to everyone.
Tuesday, June 1, 2010
MAYO CLINIC
Well things did not go well today. They are unable to do anything to help Jan. The disease is too progressed to qualify for other treatment.
We are leaving in the morning to go to Ann Arbor to begin palliative chemo/radiation treatments.
Very sad day for us we had put alot of hope into this working. We are sort of in shock right now and not looking forward to the drive home. We will be on a tight schedule going back to get started asap. The sooner they start the higher the prognosis of time.
Talk to you soon
We are leaving in the morning to go to Ann Arbor to begin palliative chemo/radiation treatments.
Very sad day for us we had put alot of hope into this working. We are sort of in shock right now and not looking forward to the drive home. We will be on a tight schedule going back to get started asap. The sooner they start the higher the prognosis of time.
Talk to you soon
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