My Kentucky Home

Tuesday, August 16, 2011

Update 2011

It's been so long since I updated this site I almost wasn't able to get in. So much has happened this year. My middle daughter came to live with me 4 years ago now. She has been such a blessing. We went to AZ for Christmas to see my other two daughters and the grandkids. Had a wonderful time. But when I got back I went into the local hospital (Versailles, KY) with pneumonia. Got home and 3 days later I was completely out of it. Sarah called the EMT's and we made an ER run. Turns out I had gone into complete renal failure. My kidneys had shut down. I had too much stored up protein and it was bottom line..killing me. From what I'm told, for a couple of days they didn't even know if I'd live thru it. The first couple of days were a nightmare. I was delusional (THAT was pretty scary), I was partially awake when they put my dialysis port in my chest (not my idea of a good time). They did a couple of procedures, one I can't remember the name of, but basically pulled liquid out from around my heart and lungs; and they started kidney dialysis. I was in the hospital for 3 1/2 weeks and was finally well enough to go home. Sarah and I lived in a townhouse with the bedrooms upstairs. Since I couldn't safely go up and down stairs, Sarah got some men from church to carry my bed downstairs. We put it in the dining room and took the dining table upstairs to store it. Thank goodness the kitchen/dining room was big enough to fit a queen size bed. It worked out great. I had a bathroom and quick access to the fridg, if and when I could get myself to eat. I've lost 35 pounds since Christmas.

My sister and cousin came out for my 60th birthday in March. We had SOOOoo much fun! No one had ever given me a grown up birthday party before. We went to lunch at a neat Italian/pizza place housed in an old church. Then we took a drive thru Lexington Gardens (the cemetery). I wanted to show my cousin the beautiful flowers and flowering trees. My sister and I had gone here before with our cameras and got some gorgeous pictures. When we got home, I had a nap and they came back after dinner with a birthday cake, ice cream, presents and cards from almost all of my cousins back in Oregon. They even made me wear a tiara that said 60 in silver glitter!! It was a hoot. It was hard to say goodbye to them. My sis and I held on just a lil longer, thinking it might be the last time we saw each other.

In late spring my oncologist gave me the "end of life talk". He gave me 3 options. I could stop chemo and just keep going on dialysis; I could stop dialysis and chemo and probably die within 2-3 weeks very peacefully or I could try ONE more drug called Doxil. I actually took 10 days to decide. I talked to my daughters and my sister. In the end, I decided to try the Doxil. All we were hoping was to keep the cancer stable. We had done a bone marrow biopsy and found 83% bone marrow involvement. With the Doxil we hoped to keep it there, never dreaming that we'd get a response. But we DID!! My numbers have gone down twice now. I'm feeling Sooo much better now than I did last spring. Then this past weekend, we hit a bump in the flightplan. I got to the clinic for chemo and was told the hospital didn't have enough Doxil. I knew there was a shortage. I'd read about it on-line. From what I've read there are something like 182 different drugs, many of them cancer drugs, that are in short supply for various reasons. UK only had enough for 1/3 a dose. So we decided to try calling other hospitals. We lucked out. St. Joseph had some and was willing to share. So I got my infusion after all (after being there from 8:00 am until 4:00pm). What makes it hard is that Doxil is used for all kinds of cancer diagnosis, not just MM. So there are a lot of people depending on it, making the demand more urgent.

My daughter and I were living in a pretty townhouse community in Versailles. We had moved there in March of 2010. But one night we heard 4 pops. We looked at each other and looked outside. There was a man lying behind my car. Turns out he was dead!! 9 bullet wounds to the head and chest. A drive-by shooting RIGHT IN FRONT OF MY HOUSE!!! The drug dealer 3 doors down wasn't on the apt lease, but his girlfriend was. My physical therapist was coming to the house twice a week. One time he came and as he was getting out of the car, he saw this man with a fat wad of money paying out to the others standing around his car. Talk about cocky!! Right out in broad daylight, knowing full well there were now cameras covering the parking lot. Come to find out that this apt community has had a bad name from the getgo. Wish we'd known. When the police came, they did their CSI thing. Even dug a stray bullet out of the front siding of my house right above the window. Eight inches lower and it would have killed my daughter. She had been sitting at the computer in the front room directly across from the front window. We decided it was time to leave. We started looking for a place without stairs in a safe neighborhood. Our local sheriff helped us find a duplex and we moved in June 1st. It felt good to be safe. The apartment is much smaller though, so I've had to work really hard and be creative in storing what we aren't using.

Our 1988 Dodge Aires finally gave it up. Timing couldn't have been worse, since we'd emptied my savings for the security deposit and first months rent, etc. on the duplex. I went on-line to the MM Acor Listserv and told my MM friends about it. Would you believe a woman in Idaho sent us a check for $1,000 to buy a new/old car?!!!!! We were blown away. She had never even met us, didn't know us from Adam. But she felt she had been blessed and so she was in a position (even tho she has MM too) to help us. I went to a local used car lot owned by Larry Wilson. The sheriff vouched for him. Larry's been selling cars there for 25 years. I told him what we needed and within a couple of days we had a 1992 Buick LaSabre for $1,000. We took it to our mechanic and noted what needed fixing before we bought it. Larry fixed everything on the list plus a couple. It's been doing pretty good until this last week. Came up with a flat tire and the battery died all in one week!! So $122 poorer, we keep truckin! (grin) Isn't life fun???!!! (grin)

The point of all this is to say that even when it looks like you're down for the count~ be open to other options. Doxil is an older drug. One we hadn't tried yet. Who knew it would work like it has?!! Who knew 3 months ago that I would not only still be alive, but well enough to plant flowers and paint the kitchen?? Whereas last spring Christmas 2011 with my grand kids looked impossible; flying commercial would be too dangerous with a compromised immune system. Now my doctor says "go for it. If you don't travel or do those things that you long to do, what's all the grief for then?" I couldn't have said it better. I'll have to plan carefully, buy flight interruption insurance, wear a mask and that kind of thing. But bottom line? The world has opened up again.

There is so much I want to see...the fall colors in Vermont, the little fishing villages in Maine, maybe seeing the Biltmore Estate at Christmas when it's completely decked out. Going to Chintotgue to see the pony swim...(Misty of Chintotgue was one of my all time favorites books as a little girl), going to NY to see a Broadway play and ride a carriage thru Central Park. I feel like God has given me another chance to fulfill those dreams before I go "home".

So for those of you just surfing because you or a friend or loved one is recently diagnosed and for those of you that have been in the battle for awhile...bottom line? NEVER give up. Winston Churchill is rembered often for an adress he made to a graduting class. Everyone was excited to have the great man at their commencement. Churchill got up when it was time for him to speak straightening his tie as he walked somberly up to the podium. He stood erect, looking every inch the master statesmen that he was. The room got quiet as Churchill surveyed the eager faces, knowing these were the best, the brightest. The ones destined to shape the world into the next mellinium. As the minutes drug out, the students started to squirm, wondering if the great man had forgotten his speech. Finally, he spoke. "NEV-AR give up!!", he said. Again he allowed minutes to pass as he looked out over the sea of eager young faces and said once again, "NEV-AR give up!!" The young people looked at each other in confusion. Churchill allowed several more minutes to pass before he spoke again. His final words of wisdom to the next generation? "NEV-AR give up!!!", he said at last. Then turned and returned to his seat. There was no need for a long winded speech. Bottom line? NEVER GIVE UP!!!

Remember to love deeply, laugh often and to Nev-ar give up~

God Bless,