I have been wanting to write this update but never quite feel like it. Even now I'm forcing myself to write this. This is where I'm keeping with the theme of this blog - weird people, me being chief among all. Why write? Because I'm weird, I guess. :-)
Let me try to chronicle in short outline form where we've been and where we are.
November 2008 - Mom collapses on kitchen floor, apparently had a seizure. Rushed to hospital where she was diagnosed with breast cancer with brain metastases. Immediately received whole head radiation that was to kill all cancer in the brain. HOWEVER, because it had metastasized it was guaranteed to come back. Myrna was called by neighbor, Mr. Kohut, to explain about the fall. Myrna called brother, Francis, who lives near Geneva, NY. Francis and Phyllis immediately dropped what they were doing to go be with Mom and Dad for a few days. We left in a day or two and headed up to NY to do whatever we could. Had Thanksgiving there with the folks and little brother Kevin and his family from MI.
December 2008 - Myrna and her parents travel back to KY where we hoped for a few months of recovery, ostensibly through the winter. Then, we would move them down here. That was the plan, anyway.
January 2009 - Two momentus events. First, we rushed Mom to St. Joe Emergency in Jessamine County because she was having some difficulty breathing. They, in turn, admitted her to St. Joe Medical Ctr. East for a pulmonary embolism (a major blood clot in the left lung and also a small one in the right leg.) Simple surgery to insert a small screen to keep the blood clot in the leg from hitting farther "north". Treat pulmonary embolism with coumadin. Second, major ice storm that forced us out of the house into the Asbury Inn for five days or so. Pretty tough to live, four people in one room for five days. Bleah! We survived, though.
February-March 2009 - Recovery for Mom and started making plans to let them go home for the summer and then we'd move them down. Honestly, I felt a little hesitant about this but wanted it so bad that I ignored the hesitation to push forward. Also, waiting to let all the radiation do it's job through these months - 12 weeks from the last date to see if the radiation had worked back in December.
March 2009 - I'm not sure of the exact date, but Mom had a seizure sometime toward the end of this month. Ambulance, ER, Central Baptist Hospital. Diagnosis: Brain shift, edema, concern over cancer in brain. Had been on steroids in January but were trying to ween off. With this diagnosis, steroids were the treatment to reduce swelling and edema. An immediate improvement. Woohoo, on the road to recovery. (Duh, what were we thinking? Where did the swelling come from?)
April 2009 - Started noticing Mom's symptoms were back. Trying to eat with the back side of the spoon, a little confusion, couldn't hold the fork, speech sometimes a little messy. Then, a major seizure in which she could not talk, lost complete control of her limbs for some time. Another ride to ER at Central Baptist. Neurosurgeon's diagnosis: More brain cancer. Later, that was changed. It appears that the initial whole head radiation actually killed any cancer in her brain 1cm or less. There were three spots. Two were less than a centimeter and one was just a little larger. This larger one was dead in the center but the outer edges were not and so continued to grow. Now, it is 3 centimeters in size, or approximately one inch in diameter. Prescribed Cyberknife to get rid of this last lesion. Keep on steroids. Surely, the Cyberknife will work, right?
May 2009 - Cyberknife. Now, just wait. Wait to see if this last lesion succumbs to the powerful, spot-light radiation. Surely, this will work. It just has to. We were actually feeling quite positive by this time. Yep, it's going to work. Went to NY to check the house, look at a realtor, clean the place up a bit, go through some stuff. Great trip. No real setbacks. Good time.
June 2009 - Interesting. Some of those weird symptoms are back. Eating with the backside of the spoon. Difficulty holding on to eating utensils. Speech a little messed up sometimes. On the other hand, generally positive outlook. Still waiting for the visit to the neurosurgeon to see if the Cyberknife worked. That happens in July.
July 2009 - Several significant happenings. July 4 weekend, took folks up to Madison, IN, to meet Mom's sister for lunch and a visit. Good trip. Everyone upbeat. Mom walked under her own power; ate fairly well, but with a little difficulty. Ran into an old, dear friend there from my college days, Mr. Archie Coons.
Somewhere around a week or two later, the dreaded and anticipated visit to the Neurosurgeon where an MRI would show where she stands, as far as the cancer is concerned. We all sat in the doctor's consulting room while he quickly examined the results of the MRI. Quick clicks on the computer...comparison to the previous (before Cyberknife) MRI - diagnosis: no significant difference. If anything, the lesion has grown and started eating at her motor skills spot.
Mom continues to slowly deteriorate, not badly, but enough that we're concerned. Plans to go to NY the end of the month to start packing. Son, Kevin, and his family were to meet us there where we would all work on packing. I would take Dad back in a few weeks and pack a truck and move them into Wesley Village, retirement community with staged care moving from independence to assisted living to full nursing home care. (BTW, great place. Wished it could have worked out.) Before we could go, Mom had a series of very bad days. Couldn't ride in a car for more than a few hours without completely wearing out. Cancel the trip. Kevin, LouAnn, and the kids went. Elaine left a campmeeting (Clinton, PA) to go help pack. Francis (eldest son) came from Geneva, NY, on Thursday to help sort and pack as well. I went to Boston, to a conference for the last week of July. Mom seemed somewhat stable. Using a walker full time now, but seemed to take to it quite well. Really stabilized her.
August 2009 - Things are beginning to happen quickly now. Mom is now needing help into the bathroom but seems to have days and times when this is unnecessary. Visit to the oncologist revealed that the cancer was not going away. "Just go home and enjoy what life you have left." No surgery; no more radiation; just be comfortable. Good thing here was that the oncologist prescribed Hospice. Great blessing. They supply roller walkers with seats and all meds related to cancer will come through them; they pay. Also, we had purchased a baby monitor the first of August so Myrna could make sure Mom made it to the bathroom okay. Fear of falling on tile, bleeding, with coumadin, could bleed out. Between 2 and 3 times a night Myrna was up and helping Mom. Mom was quite restless. Sometimes sitting on the edge of the bed for hours. Neurologist says that seizures can be caused by lack sleep. So, we would also check to see that she was laying down and if not persuade her to lay down. Despite this, Mom had a great week the first week of August.
I rented a car from KY and met Kevin and Benjamin (grandson) in NY to pack the Penske truck. Loaded it on Monday, August 10. Left NY with the totality of Mom and Dad Donovan's lives in a 26' Penske truck on Tuesday. (Thanks to Clyde and Tim Dendler for their help on Monday for a couple of hours. Came right when we needed them.) Arrived home around 9:30pm Tuesday evening. Hugs and kisses, weeping, shock that all of their stuff (or most of it) was now in KY and they could no longer go home to NY. That chapter, that 50 year chapter, was now closed. What's next?
We were up at 12 am, 2 am. Mom beat Myrna to the bathroom. 4 am, Mom hollers for Myrna to help her. She can't get out of bed. Can't stand up. Right arm completely useless and limp. I thought, we've seen this before. Perhaps she's slept funny on her arm and it just needs to wake up. No, that's not the case. It's gone. Completely. She can't use her right leg either except to straighten herself out. From 2am to 4am, life changes drastically on Wednesday, August 12. I'm a little fuzzy right here. Can't remember if we had medical help or if we just noted it to the Hospice nurse the next time we saw her. Anyway, for the next few weeks we are able to help her out of bed, onto one of those rolling walker's with the seats. Hospice delivers an electric chair and a lift chair so she can have some mobility and be able to help us switch her from one chair to the next. Kevin and family come down that weekend. Her speech is not always good. Mind still pretty sharp, but everything else is failing slowly.
August 22, Myrna and I had gone to Walmart for groceries. When we got home, Mom was complaining of some major pain in her ankle. Felt like a cramp that just wouldn't go away. In a matter of hours, a very small spot developed into a rather large, red area on her ankle. Called Hospice nurse who arrived sometime around midnight, Sunday morning. Hospice pharmacy delivered some prescriptions after 2am. (Can you believe that; after 2am delivering meds? What a great ministry and help!) Some sort of infection was ripping into Mom's right leg.
Sunday morning and afternoon, although she was in pain, it wasn't too significant and able to be controlled by a low grade pain medicine. However, late afternoon and early evening, the area had continued to grow. Called Hospice nurse again. While she was on her way, Myrna took Mom to the restroom. On the way out, Myrna called me to look at another small spot (about the size of a nickel or dime) on Mom's thigh. Within a couple of hours, that small spot grew to the size of a baseball with an area wrapping around the thigh. Nurse felt like a hospital could better care for this. So, ambulance, ER at Central Baptist, this time admitted to a hospital room. Diagnosis: cellulitis. (Looked just like this picture) While in the hospital, a mass was discovered in Mom's lungs. Either a tumor or pneumonia. Treating for pneumonia. Mom was discharged on Saturday and brought home via ambulance on Saturday. Aunt Elaine here for a visit. Hour long call with sons, wives, Dad, Elaine, and Myrna and I to inform all of what was and is happening. Guidance and advice about next steps.
Folks, it appears Mom is not much longer for this world. I am happy to tell you she is more than ready for the next. She wants to go. Asks why God is making her stay here and go through this. I don't have an answer, but I'm glad to tell you that when she gets to Heaven she will have legs that work, arms that work, tongue and lips that work in sequence with a very healthy brain. That transition hasn't happened yet. We just know it is going to happen. When? Hospital doc said 2 weeks to 3 months. Doubtful of the three months. In my opinion, I agree. In the end, it doesn't really matter when. What matters is that she "has her bus ticket in hand" and ready for the trip. Would you pray for her? I honestly don't know how to tell you to pray. The Apostle Paul said, "For to me, to live is Christ, but to die is gain." I know that Mom doesn't want to continue to deteriorate. So, if that is the option, deteriorate or die, she wants the latter. Hospice says to keep her comfortable. We're praying for that. God help us as we continue on this journey that we didn't ask for, don't want to do it again, but are very happy to have made it thus far.
2 comments:
Dale and Myrna,
I am so sorry that I was somewhat oblivious to what you've been going through. I knew that Mom was sick and that you were caretakers, but I didn't really know what all had been occurring. It has really been a rocky road for your whole family!
I'm very glad that you have each other for support through all of this. I'm very glad for a supportive hospice structure. I'm also very glad that you've been able to spend this end-of-days time with her, even though it has been very hard. Your love and care must be such a blessing to her.
As far as not knowing what to pray for, I will simply pray that God surround you all with His comforting presence.
Know that you are in both my thoughts and my prayers.
Kelly
Thank you, Kelly, for your prayers. God knows what is needed and any prayers directed our way will be applied as He would choose. May God bless you as you continue your studies. Hope to see you soon (November).
Dale
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