Monday, January 31, 2011

January 31, 2011

Greetings from Joy,

Much has happened in a week and a half. There have been many visits from Hospice Nurses, Social Workers, and Delivery Men with equipment. In general, Bill is in good spirits and still has his wits about him.

His mobility has decreased rapidly and the strength and coordination seem to change from day to day. Oxygen needs have progressed from a 2 on the compressor dial to 8.

As a caregiver, I have had a few adventures with the oxygen compressor…for example if the water is too high or too low in the humidifier container the oxygen will not flow…as well as if you do not have the top put on just so.. no oxygen.. OIE and then if the power goes out and it has for about a half hour… no oxygen!!!!!

If you would like to chat with Bill he is able to have a conversation over the phone. Just know that it will take him a while to catch his breath between sentences… and some days are better than others..

I want to thank everyone who has been so kind to send a heartfelt email or who has expressed deep compassion for Bill and our family over phone conversations. At times I am overwhelmed with the heartfelt kindness and goodwill of so many of you. Thank You Thank YOU THANK YOU!!!

Bill is also taking a few visitors here and there. Please just call or email so that I can plan for visitors between hospice nurse visits.

Thank You. Peace and Blessings.

Thursday, January 20, 2011

January 20, 2011

Dear Family and Friends,

Bill is home and resting well. Much has happened from our last blog entry and I will do my best to tell you how we are all doing and how things are unfolding.


On Friday I took Bill to Columbus to meet with Dr. Blum about a possible medical trial that he may be eligible for. Due to Bill’s breathing challenges he allowed me to get a wheel chair as we navigated another new hospital’s corridors and elevators. In typical Bill fashion we were about an hour or more early and that made for an easy feeling as we filled out paperwork and billing information.


A Dr met with us early, talking with Bill going over the now long medical history; looking and thumping as Dr’s often do with Bill and the overall feeling of the room was good and as with many experts thinking that Bill looked okay all things considered. And then the Dr left to go meet with the lead Dr. Blum of the clinical trial and look at the most recent PET together.


Upon their return the mood was much more intense. After learning about the medical trial Bill decided to think about it over the weekend. After all it was late on Friday afternoon of a three day weekend. No one was going to be at their desk to process paperwork anyway.


As the weekend unfolded Bill continued to experience difficulty breathing however any mention of going to the ER was not welcomed. He just wanted to wait for his 8 am echo cardiogram on Tuesday and go from there. And so I wheeled him to his appt at 8 am Tuesday and that was easy. Then we went downstairs to talk to the Cancer Care Coordinator about the insurance for the trial and to see what would need to be done to get that started and by the way… is there anything we can do because Bill is working pretty hard at breathing???… with that, one of Bill's cancer Dr's...Dr. Cutler came in to the office to give a listen and ordered an x-ray for his chest. The x-ray was complete and then back to Dr. Cutler for review. Of course Bill and I are thinking darn … you are probably going to be stuck with a Big needle to have more fluid drained today.. oh well at least your breathing with improve..


As Dr. Cutler looked at the x ray he called the pulmonologist Dr. Bishop and together they decided that it would be best for Bill to have a CAT scan to determine what was going on with his right lung.


And so Bill was given a large bottle of contrast to drink and then in two hours he would be ready for the CAT scan. Even though it was a very busy day in the imaging department he was able to get in for a scan with very little wait time.


The good news for Bill was that he was able to have oxygen during the scan and his color and disposition was so much better after the scan. So I was pleased that he had that extra support. Once the CAT scan was complete we went to see the lung specialist Dr. Bishop whom Bill has meet with before.


It was good to have a familiar face meet with us. Dr. Bishop did not waste any time in pulling up the CAT scan for Bill and I to review. There was no fluid to remove from Bill’s right lung…the cancer had taken over 90% of his right lung. No wonder he has been working so hard to catch his breath.. Oh my goodness!!!


After we had a few moments to take in the shocking information it was time to see the best option to provide comfort care for Bill; In other words, the best way to get oxygen in the home for Bill. Bill took the oxygen test walk around the hallway so Dr. Bishop could have numbers for the form. And then discussion turned to perhaps hospice is the best care avenue to go for Bill. More talking and deciding and knowing if things turned around with the trial Bill could be taken off hospice care with ease. Within an hour of our arrival home a Hospice admin person was at our door and in another hour Bill was hooked up to an at home oxygen compressor and I was given a script to have Bill receive some medication to relax him so he would be able to breathe with ease and hopefully rest more deeply as well.


All were great improvements from the effort Bill was exerting over the weekend. Bill was so happy to have oxygen that he did not want to move from the living room that night and so he rested deeply on the couch that night and was ready to meet with more hospice folks on Wednesday - good thing too because I needed to take Bridget to have her leg x-rayed on Wednesday to see if she was able to get out of the leg brace. Good news for Bridget she was given permission to go without her brace and to move on to physical therapy to see if she can get back out on the ice.


Anyway it was perfect timing because Bridget was able to meet the kind hospice social worker and have a small introduction to the kind of support that is available to kids during this challenging time of great change.


It was later in the day that I got Bill upstairs for a bath and more rest in his bed. When I got Bill upstairs he told me that Dr. Wood had called while I was away and wanted Bill to know that they had tried every option that was medically available at this time and that it was most understandable and reasonable for Bill to chose hospice care at this time. Words fall short to express the thankfulness I have to the entire medical community at WPAFB as well as many other hospitals.


Bill slept well in his own bed on Wednesday night and is coming to peace with the fact that there is no more treatment or cure for him. Actually there is a relief to be able to breathe and to rest because there was so much effort involved in just breathing over the 3 day weekend.


As a family I think we are shocked at how this slow slow process of treating curing treating treating treating managing..cancer has now just blip turned…


For me the emotions of deep sadness wash over me much like a wave.. and so I do my best to process them on the spot… breathing in feeling the feeling and then exhaling…. Sometimes I forget to breathe out.. and that’s when the feeling becomes so intense…so I just keep breathing and keep weeping …and then… the wave passes. I have honored that energy of emotion for that moment…and then..I need to go to the store because we have run out of toilet paper and a snow storm is on the way… so curious this thing of transition… I love my Husband Bill beyond words and I would love for him to stay and be well however after watching him endure treatment after treatment of chemo after chemo without stopping the growth of the cancer and after watching him struggle for breath all weekend I can only pray for his best and highest good to unfold. And Dear Friends and Family it appears as if it is for him to transition to heaven. I know that it is a wonderful wonderful place, and I know that his spirit will be able to visit with me and the children…and yet I weep because I will miss having his spirit in his body.


And so the next part of Bill’s Amazing Adventure Continues… Please pray that we all have the strength to feel our feelings of love, appreciation, sadness and sorrow…and that we are able to breathe through the feelings in whatever way is right for each one of us. From the Center of my heart I thank you.


Peace and Blessings to All.
Joy
bubbajr0902@msn

Saturday, January 1, 2011

Happy New Year

First of all, I'd like to thank everyone that has sent me cards, books, CDs, DVDs, and good things to eat. I'm very appreciative and have kept all of you in my prayers.

I'm sorry to report that my PET scan from last week was not very encouaraging. The cancer is still spreading and has now reached my esophagus, stomach, and two spots on my spinal cord. The cancerous mass over my heart has grown and my right lung has partially collapsed. Because the cancer is not under control, I won't be in a stem cell transplant anytime soon. The doctors at Wright Patt, OSU, and the Cleveland Clinic are looking to see if there any clinical trials for Hodgkin's treatments in which I can participate. Unfortunately, there do not appear to be a lot of treatment options available.

Because this is a difficult time for me and my family, I ask that you respect our privacy. I have received more books, movies, and music than I can enjoy right now, so I ask that you please don't forward any more gifts. I do, though, thank God everyday for all that you've done for me and supported my family. I still need your prayers. God bless you.

As things get more settled here, Joy and I will set up a visiting area in our house where I can receive guests. Joy and I will let you know when we're ready. Right now, my blood counts are too low for visitors.

I will post an update after I visit with the doctors this week.

In God's peace,
Bill

Friday, December 17, 2010

Update From Bill, Dec 17

Since the last post, I've had the port intalled and have had 3 treatments with the chemotherapy medicicne GVD. Like the rest of these medicicnes, GVD makes me very tired. I did, however, receive a blood transfusion this week and that has helped make breathing easier and has given me more energy.

I will get one more treatment with GVD on Dec 21. Sometime the week after Christmas, I will get another PET scan to see if the GVD is keeping the cancer from spreading. If the GVD is successful, I will start a bone marrow transplant program as early as January. In conjunction with a bone marrow transplant, I may also participate in a clinical trial at the Cleveland Clinic on a new medicine called XGN-35. XGN-35 has shown great promise in keeping Hodgkin's from recurring in patients who have undergone a bone marrow transplant.

I thank everyone again for your support and prayers during this time. I'll post an update after I've gotten my PET scan.

Thanks,
Bill

Sunday, December 5, 2010

Up date from Joy

Um last week that new PIC line stopped working and so the Dr's took it out on that Monday. And Bill got the chemo the old fashioned way. He did fine with it. Tomorrow on Monday Dec. 6th the plan is to put a port in the right side.

A port will be nice because it does not require as much up keep as the PIC line.

That will be taking place at WPAFB hospital around 10:00 if you have a min to take a breath and send some love and a few heavenly helpers around Bill at that time it would be so appreciated.

WE ALL want to THANK EVERYONE who has sent us Fraser DVD's. So much fun to watch as a family. I did not think Bridget would like them...however that girl if full of suprises.

If fact at Bridgets skating competion this weekend up in Ann Arbor she took a big fall and so tomorrow I will be bring her to WPAFB to get checked out as well. My goodness. We will see if she need and MRI on her knee tomorrow. Good thing everything is on the same floor and just a few hallways apart.

With that said I think Bridget and her Dad will be enjoying the DVD's together. THANK YOU!

Will let you know how the port instlation goes tomorrow.

Monday, November 22, 2010

Nov.22 2010

Nov.22 2010
Greetings from Joy,

Bill had a new PIC line put in his other (right) arm today in preparation for the GVD chemo therapy tomorrow. The procedure was done in about an hour and Bill said that the removal of the old one was easy.

We are hopeful that this will be the right mix of chemo that will put a stop to the hodgkin's lymphoma and then allow Bill do start the stem cell transplant protical.

When we went to the Cleveland Clinic Bill found out about a follow on trial that he may be a candidate for. If that looks promising perhaps he will end up doing the stem cell transplant up at the Cleveland Clinic
instead of the Cincinnati Jewish Hospital. There are several other things that need to happen and unfold before we cross that bridge. (hum, that is a Bill saying if there ever was one)

For now please keep Bill in your prayers. Seeing the chemo therapy being installed with Divine Intelligence targeting the cells that are not of benefit to Bill's Body. Also seeing his healthy red and white blood cells able to rejuvinate with ease in harmony with the chemo therapy.

We are planning a low key Thanksgiving with the four of us and the NEW BUTTERBALL TURKEY FRYER!!!Its suppose to be safe? and easy to use. Bill who in the past never had time to watch TV was quite taken by the turkey fryer infomercial and so when it looked like it was something he wanted I told him to go for it!
Ha ha ha and so the adventure of turkey frying is before us.

Thank You for all of your prays and well wishes.

Wednesday, November 10, 2010

Update from Joy ~ November 10, 2010

Greetings from Joy,

The PET scan that Bill had on Thursday Nov. 4th indicated that he would need more and a different kind of chemo therapy before he can begin the stem cell transplant. Although there is less along the center of his chest...there still is some active cell growth in that place near his heart as well as a small spot on the back of his neck and a few spots on the edge of his liver.

Bill is going to gather additional information up at the Cleveland Clinic on Tuesday Nov 16th and then should be able to make a choice as to what is the best chemo treatment plan for this next phase of clearing the cancer.

It was pretty "sucky" news when Bill found out that he would need more chemo before he could go thru the stem cell protocol however, He has had a few days to do some research as well and a chance to see the scan. And although it's not great to see the "hot spots" it was somewhat reassuring that its not that much... and the 3rd type of chemo must be the charm to clear the rest of the cancer so that Bill can begin the stem cell program.

Overall I would have to say Bill is hanging in there. He has not had chemo for about a month and he seems to be completely recovered from his lung surgery. He is still tired and takes a few naps here and there through out the day.

He still has his eye brows and eye lashes and a few hairs remain on the side of his head.Mostly he is the same old Bill or Bubba just not as energetic as he was before.

One guilty pleasure that he has discovered, Fraser is on Mid morning TV and thankfully that makes him laugh. So I am now on the hunt for the Fraser DVD's starting at season one.I looked at Target and did not have any luck. So if you happen to be out and about and happen to find Fraser DVD let me know. Thanks.

Until the next post know that Bill is hanging in there. He misses work and would like to be doing something useful soon. Please continue to see Bill as healthy and well, as you pray for him, as well has being free and clear of cancer.

Thank you for all of your prayers and support. It means so much to Bill and myself as well.

Thank You
Joy