Long Day

Yesterday we left the house at 8am to go to the doctor for a blood test to see if my Dad needed blood. After getting the blood work we sat in the doctor's office for about 2 hours waiting for the results. He did need blood and platelets so we head to the hospital next door arriving there around 11:30. Since his platelets have to be HLA typed now so that he won't reject them they had to order them from a special source. While we were waiting for those they prepared my Dad to receive 2 units of red blood cells. These take a long time to administer. They finally started those around 1:00. He finished the red cell transfusion around 8:30 and we were still waiting for the platelets to arrive. They arrived around 9:30 and were set up by 10. He finished the platelet transfusion around 10:30. So we didn't get home until 11. It seems to me that they need a new process for handling these sorts of things. People who are really sick don't need to be waiting around for hours and hours. The beds and chairs they have in the rooms are not comfortable which makes matters worse when you are sitting for 12 hours. It was a long, exhausting day. He had to do this six times last week. Fortunately this week we have only had to go once.

I haven't asked the doctor what happens if he stops taking the transfusions. I know the answer but I just don't know what it means in terms of time frames and suffering. This is so difficult. My brother was supposed to arrive last night but he is still sick. I have been telling him for a week to go get this Chinese concoction that I took when I was sick but he didn't try to go get it until late yesterday and they were closed. Very frustrating. So he will come on Friday night or Saturday morning if he is better.

I miss my husband and my children. I wish that they could be here too but it would just be too much. As the hours pass by slowing I often feel very lonely.

Living

Just about two years ago my mother died. In her last two weeks it was very hard. One day when I was talking to my daughter I told her that my mother was dying. She said, no she's not, "she's living, everyday that she is here she is living, she's not dying." It didn't strike me until later how wise she was. Even when there is just a little time left, a person is living, not dying.

Now I am faced again with this prospect with my father. The treatment he was taking was only making matters worse and we took him off the medicine on Friday. We don't know how long he has but for the time that he does have I am planning to be here with him. Because I want to be but also because I promised my mother the day that she died that I would take care of him. He is in pain quite a bit and has been sleeping a lot for the last few days. The stories that I enjoyed so much on our trips back and forth to Cleveland are gone. He doesn't feel like talking much. But he is enjoying listening to me talk on the phone and try to work on this deal to buy a big real estate portfolio. He always asks me to stay in the room so he can listen to my calls. I think he's living through me a little bit. So for now, I will remember what Lindsay said, my father is living everyday that he is still here with us, he's not dying.

Days Gone By

Over the past several months I have been driving my Dad back and forth from Kentucky to the Cleveland Clinic through the states of Kentucky and Ohio. During those drives I have had the wonderful experience of hearing about my Dad growing up on a farm and many of the jobs he did on the farm - milking cows, delivering milk, plucking chickens, planting tobacco plants, cutting tobacco.

Today, I learned something new. While driving down I71 in Ohio between Columbus and Cleveland I noticed a field where the corn was set up all across the field in little tee-pees. I asked my Dad what it was. He said they were cornshocks and that's the way they used to harvest the corn when he was a boy. Then he started thinking for a minute and said, "you go to the center and tie four stalks together then you cut the stalks in a square 16 rows out in each direction and tie them to the original four. The shocks are left in the field until the corn is need to feed the farm animals. He said that when he was a boy they used to do it at night by the light of the moon. If you did it during the day when it was dry the leaves on the corn plants would tear your arms up like razors. So they worked at night after the dew was on the plants to soften the leaves.

How's that for some agricutural history.

Here's a link the a University of Kentucky article on this old method of harvesting.

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Sometimes life punches you in the face

It has been a while since I have written. That's because I got punched in the face in the figurative sense last month. My father has been feeling bad for quite some time. His doctor ran some additional blood work and thought that he had Leukemia so she ordered a bone marrow biopsy. I flew out for that and it was extremely painful for him - it took them three tries to get the sample. Turns out he doesn't have Leukemia. We took him to the Cleveland Clinic (CC) for a second opinion and to see if there are any treatments that might not be available through his doctor in Ky. Eventually we learned that he has myeloproliferative AND myelodsyplatstic disorder due to several gene/chromosome abnormalities. Both are very rare so its is extremely rare to have both together. Basically, the stem cells in the bone marrow go haywire and mutate when they divide and then they start dividing rapidly and filling the marrow with bad cells which doesn't leave room for good cells. Eventually all the counts - red, white and platelets drop because the marrow is full of immature/undeveloped cells rather than mature quality blood cells. Ultimately is is fatal. His doctor at home gave him a prognosis of 4 to 6 months with that being "optimistic" because his white blood count is so low he has virtually no immune system. The CC Docs have some medicine for him to try that has had a fairly good success rate with people with one of the disorders. We are hopeful but concerned that we may have waited too long to go the CC. While he is taking this medication he will need to go to Cleveland every two weeks to get checked. In addition, he will get worse before he gets better and may end up having to have blood transfusions every week for a period of time. It is very scary. He lives alone and cannot be moved to Denver because the high altitude will make things worse for him. Maybe if the medicine works and there is improvement we can get him out to Colorado. So for now I am flying back and forth to Kentucky and driving back and forth to Cleveland - with the help of my brother.

So today I am exhausted. I flew out of Louisville this morning at 6am and my oldest daughter sent me 3 text messages in the middle of the night (2am) which woke me up because she wasn't feeling well. Something just seems to be haywire in that everyone needs more of me than I can give these days.

If you are interested in knowing more about what he has