Sunday, January 30, 2011

Weariness and Strength

They are at opposite ends of the spectrum. More times than not waves of wearniness overcome me. I'm sitting, perfectly still and quiet, like a peaceful deserted beach when a wave of wearniness rolls over me as the tide overtaking the beach. I wonder how I can walk to the car, much less get up and repeat this tiring process another day. I come home to a messy house, dropping mail, my purse and coat wherever there's an empty spot. The Christmas wreath is still on the front, Christmas dishes are stacked on the dining room table waiting to be put away, the morning coffee mug sits on the counter. I remember. Major on the majors. There is so much to do and I'm torn between being at the hospital with Tom, keeping up with daily chores like laundry, bills, etc. and resting. Yesterday, late in the afternoon, just when I thought I'd scream if Tom called me one more time, I heard a voice in my head say, My strength is made perfect in your weakness. (Tom calls my name, sometimes because he just wants to know I'm there, sometimes to tell me something. His speech has deteriorated so that I have to get in his face and strain to understand what he's saying. It's frustrating for us both.) God's word came through and I knew I was trying too much on my own. I have to rely on God's strength.

So, this morning, after a good night's sleep I'm ready to shower, dress and head to the hospital.
I've had a cup of tea--simply because my coffee pot won't come on again--Tommy's already fixed it once--I'll fix myself breakfast and swallow one last pill. When I come home tonight I'll think about chores. Marty and her boys are coming Tuesday and if the remaining Christmas boxes are not taken to the attic, they'll have nowhere to sleep.

I have begun the oral chemo regimen. The first day I took the capsule, I got nauseated late in the day. Though I hate to take them, I took a pill for nausea. The next day I had to force myself to take that day's capsule because I didn't want to repeat the nausea. So far the extreme fatigue and shortness of breath have not returned. We are praying that once a day will be kinder to my body than an infusion every two weeks. God's strength is a must.

Yesterday was a beautiful day--sunshine and mid-sixties. The best part was the visit of two Mississippi friends. Tom was so glad to see them and really perked up when he heard their voices and saw them. Our sitter stayed with him while we went out to lunch together. Of course, there was much talk about Tom, etc., but also there was talk of children, grandchildren, things "back home" and shared memories. Their visit made the day--or the week--or month. It was a blessing, indeed!

Thank you, faithful friends, for keeping up and for your prayers.

Pastor Margaret

Friday, January 28, 2011

A New Room . . . is what Tom knows about where he is now. Actually, we don't know what he knows about his condition. He asked once yesterday afternoon where he is and when I said that he is in the hospital and had been there three weeks he said nothing. Today someone asked how he fell and again, there didn't seem to be any recognition of what has happened to him. Yesterday he was about as alert as he gets; today not so much. He told me when I arrived that it was harder for him to talk today. This afternoon he asked for pain meds, he was given morphine and finally settled down and slept. I ran two necessary errands and came home by 5:30.

Throw away what you think you know about Hospice Care unless you've had to admit a loved one. In the years I was blessed to be a part of Older Adult Ministry I could spew a lot of information. In the last several years the realities of growing older and living with chronic illnesses have invaded our lives. I remember talking to groups about the difficulty of giving up measures of independence and then how difficult it was to cope with Tom's reaction to the news that he could no longer drive. I have had to learn what to say "no" to and what was allowable, though the consequences might mean more work for me. But, I digress.

The Hospice team was wonderful today as they came, one by one, to introduce themselves, to ask questions, to see if we had any and to get to know both Tom and me. We were treated like people, not the patient in 989. At some time during the day I met all except one member of the team assigned to Tom. Only the chaplain was absent. I almost wept as I watched two aides give Tom a bath and change his linen. They encouraged and affirmed him and treated him with such tenderness. What a comfort to both patient and family members!

As many times as I have visited and prayed with terminally ill people and their families, it has been difficult to pray over my own husband and commit him to the Lord completely. Isn't he my husband? Don't I take better care of him than anyone else? I have promised to care for him in sickness and in health. It's a control thing that goes all the way back to Adam and Eve. To others I have recommended giving their loved one permission to let go. I have not been able to do that with Tom. He has always been such a fighter and I don't want him to think I have "given up" on him. The Hospice case manager helped me with that. After our conversation, I thought: "What's wrong with you? You and Tom have always trusted God with your lives and sought His wisdom and guidance. You need to do that now." We not only have hope, we have the one who is Hope!" I have been studying the book of Revelation as I sit with Tom and realized as never before what a beautiful picture of hope it paints. God continues to guide with His Word. He will give me the words I need to say.

One last thing. No matter how old you are, no matter whether you are married or single, do not pass "go" until you have an Advanced Directive for Health Care in place. Simple forms are available on-line and other places, or you can expand on the form and state your specific wishes. Name someone as your power of attorney who knows your wishes and who will see to it that they are executed. Such a document is a priceless gift for those who love you!

Pastor Margaret

Wednesday, January 26, 2011

The Tough Decision . . .

Since I last posted Tom's condition has continued to change--to the point that yesterday Tommy and I both looked at him and knew something was different. He doesn't do anything but sleep and his eyes are vacant. I was told by the neurologist that there wasn't much about Tom that is reversible--definitely hard to hear, but not totally unexpected. Our observation plus counsel from two doctors led us to ask for the paliative care team to evaluate and advise. We met with them this afternoon. Their recommendation is to move Tom to the hospice area on the oncology floor. I said the decision was tough, but it was made easier by having Tom's wishes documented in his Advance Directive. We called Marty for her input, she concurred, so tomorrow I do necessary paperwork to have him moved. If he stabilizes or if by some miracle, he improves we can bring him home which is what he prefers. I don't expect that to happen.

Last night Tommy and I had a serious, frank "discussion" with Tom. Who knows what he comprehended? After Tommy finished assuring his dad that he would care for me and how much he loved him, Tom says, "I'd like to go to the kitchen for some cookies." Of course, he was hard to understand, but he knew what he wanted! Next, we prayed for him, asking for God's healing and for God to come quickly. I spent the night because I couldn't bear to leave him. He has slept most of today and showed no expression when I kissed him goodbye and said I was coming home.

Fortunately, I don't believe Tom knows the seriousness of his condition. He may not even know he's in the hospital. He surely doesn't know that he's been there three weeks. Your prayers and concern, your FB messages, e-mails, cards and calls have sustained us. I am so grateful! We know that Tom is safe in the arms of Jesus and that he will have a new body and a new mind when God calls him home. How I'll miss him!

Pastor Margaret

Saturday, January 22, 2011

A song comes to mind . . .

But, I can't think of its name. Remember? First you say you will and then you won't; then you say you do and you don't? These vague words are so descriptive of Tom's situation and, for that matter, the words and advice I'm hearing from doctors. We are fortunate with really good, caring doctors, but it's as if they are so focused on their own specialties that don't they know how the whole works together--or not.

For instance, I saw the neurologist this morning and he is not optimistic about much recovery. He sees the Parkinson's, knows how it has progressed in Tom since first meeting him in 2007 and knows from both a professional and a personal view how Parkinson's affects everything else. Before I arrived this morning, the infectious disease doctor came, saw that the white count had started going up again, so ordered a chest x-ray. I didn't know about the white count and was surprised to see the x-ray techs arrive this afternoon. Still later in the afternoon the medical doctor came and was encouraging about the small improvement steps. He spent several minutes telling Tom how important it is for him to eat to get his strength back. Maybe Monday I will talk to the social worker about discharge plans. Maybe I will and maybe I won't.

I won't go into the practically nonexistent care of today. My mother was a nurse and I know how demanding their jobs can be. However, I was not at all satisfied with today's lack of care and concern for Tom! Nuff said.

My treatment began again yesterday or the Avastin part of it did. The insurance company approved my taking the chemo drug in capsule form once a day. I'll begin that regimen when they arrive by mail the middle of next week. Our hope is that I will respond more positively taking small daily doses than an infusion every two weeks. Even after two months off, my red counts are still low. God has provided the energy I've needed these last weeks; it definitely didn't come through a good red count!

I covet your prayers for patience and that I might bear the image of Christ as I interact with all the medical personnel.

Pastor Margaret

Thursday, January 20, 2011

Gradual Improvement . . . But

What does it mean? The infectious disease doctor said this morning that the white count continues coming down. The infections(?) are better and more tests are ordered for tomorrow. In the early morning Tom removed the nasal tube. We don't really know if it was a conscious act or what, but that meant no means to give him nutrition or Parkinson's meds--not good. The bedside swallow test was "borderline," meaning it had to be repeated in x-ray and when I left at five, there were still no results, leaving us to wonder if needed to have the tube reinserted. Between two and three the nurse called someone to see if she could crush his meds, put them in applesauce and administer. As soon as they were in his system he relaxed and went to sleep.

A little after noon I began to watch snow flakes outside our window. I drove home in what appeared to be a winter wonderland. The trees were beautiful and there were few signs of people walking or driving in the snow. There was only one set of tire tracks on my street. TV reports that the storm is moving on East, but with temperatures in the teens tonight, the streets will be icy in the morning. I'm supposed to go to Corinth--may have to call and reschedule.

The last two weeks have been frustrating, scarey and stressful for us as we have watched and waited for developments. I have no idea what Tom knows about his situation. It is difficult to know whether his reactions are strictly related to his current problems or if they are a manifestation of the Parkinson's. One minute he communicates; the next minute he doesn't. Sometimes he knows when Tommy and/or I are present; sometimes not. He talked with Marty on the phone; he sang with the grandchildren. When I first arrived this morning, he asked me who I was. Most of the rest of the day he rambled words I couldn't understand and could hardly hear. The one constant in all of this has been the mercy and grace of God. Never have the promises of God been more meaningful! Never has His Word been more reassuring! I continue to pray for God's guidance and God's peace in the days ahead. Thank you for joining with me.

Pastor Margaret

Wednesday, January 19, 2011

The facts as I know them:

--Tom seemed better yesterday.

--He had spoke briefly to Marty on the phone yesterday. The account is on her blog:

--Today the white count was down and we had an answer to why it had been high. He has a bacteria in his intestine that can be caused by high doses of antibiotic and often presents itself in persons with compromised immune systems. They are treating it with other high doses of powerful antibiotics. Go figure.

--He worked with the physical therapists and managed to sit on the side of the bed for seven minutes. That was about ten this morning. He slept the rest of the day.

--Tomorrow he will finally have the swallowing test.

--I left the hospital a little before four to do some necessary errands. We are expecting more snow and or ice in the next couple of days and I needed to be prepared.

--Liz called to say she took the children by to see him after church. They sang "Jesus Loves Me" and "Deep and Wide" and he sang along. Earlier in the day he wouldn't have done that.

--We are still living hour to hour; don't know what to expect; don't know where he might go. Our trust is in our ever faithful God who knows the answers to our questions and will reveal them in His time. We continue to covet your prayers. I often tell others that God works through the prayers of His people. Never has that truth been more evident to me than now!

Pastor Margaret

Monday, January 17, 2011

The vigil continues as we wait for Tom's healing. Today, as I was sitting and thinking of all that has happened, what has not happened and the information we have tried to process from the doctors, I began to wilt. A dear California friend used to call me a "Steel Magnolia" and I knew today that I was anything but. I am more like a bruised magnolia blossom that turns brown and wilts when it is touched. My body is running on adrenalin, my mind is wrung out and my heart is breaking as I watch Tom lying there.

Toward the end of last week one of the doctors discussed with me what they are concerned about in a person in Tom's condition--complications of clots, pneumonia, urinary tract etc. Today we were to have a swallowing test and see if he could follow commands, but yesterday he spiked a fever and his white count went up to 42,000. Instead of what was planned he has been pumped full of antibiotics, acquired an infectious desease doctor and had more tests. The neurologist on call this week is Tom's regular one and he knows Tom like the back of his hand. He is a very good doctor, explains things well and we have a good relationship with him. I know he will be honest and that he cares. Full recovery, because of the Parkinson's, is not realistic.

The three of us--Tommy, Marty and I--may have to make a hard decision soon. Please pray for us. Tom is the love of my life, a true gift from God.

Pastor Margaret

Tuesday, January 11, 2011

Keeping bedside vigil can be both tiring and frustrating! Tonight most of the frustration is gone, but the tiredness seems to have increased, though it could be a sign of relief. Tom has not awakened since his surgery Friday night and we spent Sunday night, all of yesterday and a good bit of today waiting to find out why. We learned this afternoon that results of yesterday's MRI showed that Tom suffered between 20 and 30 small strokes during surgery. The neurologist said that it was a rare complication, but said he should recover from them completely in two or three weeks. In the meanwhile, he will remain where he is. He has a nasal tube so that he can receive his Parkinson's medications and proper nutrition. I understand this development will alter recovery, but am trying to not borrow trouble from tomorrow. After all, we are taught to pray: Give us this day our daily bread.

I return to the oncologist Friday and expect to resume treatment. I have enjoyed the extra energy that has allowed me to do simple things like shop and cook and bake without getting so exhausted. Being off treatment has also provided me the energy I've needed during Tom's latest ordeal. It is just one more proof of the truth of God's promises.

We are so grateful for all the prayers offered in our behalf; the FB messages; the calls and e-mails. No one ever had such faithful and wonderful friends as we do!!

Pastor Margaret

Friday, January 07, 2011

A Quick Note

The last approximately thirty hours have been stressful and somewhat unbelievable. Tom fell in the driveway yesterday afternoon and broke his hip. The circumstances were crazy! We all tease him about his fixation with the Dairy Queen and how it's always been one of his favorite places. We went to Brown Bag Bible Study at noon where no one brings lunch so we usually go for food afterwards. We did that yesterday and when we finished Tom said he could go for a sundae from Dairy Queen. Somehow before we out of the parking lot, he had begun getting more on himself than in his mouth and tummy. By the time we got home he had a spoonful of ice cream in each hand. I parked on the slope leading to our garage, came inside for materials to clean him up, got most of the sticky off him and helped him out of the car. As I was beginning to wipe down the car seat, I heard a scary thud--his head hitting the concrete. He had lost is balance and fell--hard! I called 911 and Tommy and went back outside to wait. We arrived at the ER about 3:15 and were wrapped up in the "wait and see" process until about 2 this morning. ER was exceptionally busy late yesterday with trauma patients, but Tom was not high up on the triage list. He was x-rayed for fractures, scanned for bleeding in the brain or a problem in his neck. Everything was clear. Tommy kept noticing Tom grimmacing when he moved a certain way and told the doctor, at which point the doctor said we should see if he could walk-he couldn't take more than three steps. Back to CT for a pelvic scan and there they could see the fracture. Everything took forever! I got home a little after three. The nurses told me that the surgeons made rounds really early and I should either be back or leave phone numbers so he call and let me know what he proposed to do. About 9 a.m. I got a call from the floor supervisor asking for permission to do the surgery, just in case they came for him from surgery before I got there. Fast forward to 2 p.m. when we learned that it would be at least four before it would be Tom's turn. The anesthesiologist made his fact finding visit about 4:30, saying it would be another two hours at least. Bear in mind that Tom has had nothing to eat or drink since the ice cream that started this fiasco. We had turned on the Cotton Bowl and I had gone to sleep on the all purpose love seat in the room when a new doctor walked in to tell us that Tom could not have surgery until tomorrow because his white blood count was elevated. Hello!! That got my attention! I knew no one had drawn blood since I arrived at 9:30 this morning and asked why we were just learning of an elevated count and had been waiting for hours. His explanations of why the precaution went in one ear and out the other. I knew what he was saying, but it was obvious that the hospitalist folks were not communicating with the orthopedists. Not one question I had could be answered to my satisfaction, but I could do nothing. He went to the desk to order food for Tom and while there, surgery called to say they were coming for Tom. What then? Finally, the two doctors talked and Tom did have the surgery. What an ordeal!!

The actual procedure took about 30 minutes and he was back to the room in record time. The surgeon is a member of the church and he went the extra mile explaining things and telling us how well Tom did. I guess we should be thankful that the waiting was the long part and not the surgery.

God taught me a lesson during the frustrating wait in ER and again in the room today. I was getting madder and meaner by the minute, knowing what a bad witness that was. I knew that if I exhibited the anger I was feeling it would not be the image of Christ being seen. I thought of verses whose message is to be thankful in all things and began naming and thanking God for each blessing that came to mind: family, friends, prayer, the Word, medical care and so on. My spirit was calmed and my anger subsided. I told that to the doctor who delivered the message that surgery had to be postponed. He said nothing, but grinned. I pray he understood what I was saying and I pray that the Spirit of Christ was exhibited to all who have cared for Tom during the last thirty hours.

Pastor Margaret

Wednesday, January 05, 2011

Here we go again . . .

The repacking and putting away is in progress. Every year I can remember I have tried to think of more efficient ways to store things--this year is no different. The challenge will be to remember how I made changes, what's in the boxes and where those boxes are. Thankfully, no one is pushing me to get it done and I have a precious helper who goes up and down the pull down stairs to the attic. The one thing I resist putting away is the angel choir that belonged to Mom and Dad. It's one of my most treasured possessions! Except for the choir, I should be finished by the weekend.

Though I love the holidays, I also love getting back into a routine. Brown Bag Bible Study resumes tomorrow and we are both anxious to get back to the study of Zechariah. Conference rivalries begin in college basketball in January and we're ready to begin the road to the Final Four. All West Tennessee band try-outs for middle school are this Saturday and we're looking forward to taking Jacob to Collierville (just east of Memphis) where he will compete, this year on baritone sax. So, here we are, starting another year, getting back into routine things of our lives.

I wish I knew what "here we go again" means for treatment. I am still waiting for word as to when I see the doctor again and when treatment begins. On days when I don't feel really great my imagination runs wild. One day last week I was unloading on Marty and wondered if no treatment, no word from the oncologist had a hidden meaning. She said, "Do you think he's given up on you?" I replied that if he had and that was the way he practiced medicine he wouldn't have a liscense very long. She said that she only asked the question because she wanted me to hear how ridiculous I sounded. That has helped me wait more patiently for "here we go again" where the cancer is concerned.

Tonight, particularly, I share with you "here we go agains" that are at the top of our prayer list. Our friend, Susan who begain her journey with inflammatory breast cancer in 2007, learned this week that she has several spots on her lungs and is waiting for the next step in her treatment. Please pray for a miracle for her. Just before Christmas we learned of a dear California friend who had surgery for bladder cancer and of another who was to go this week to learn the extent of recently discovered bladder caner. Over the weekend we heard from a friend in Iowa whose husband has a recurrence of an abdominal cancer. They all need prayer as well.

Will we ever stop hearing of new or recurring cancers? Will there ever be a cure? Tom and I pray at every meal for the afore mentioned friends and for another Susan who lives nearby. Tom also prays for all the cancer to be removed from my body. Though we know medical statistics and probablities, we believe God is a God of miracles. I know that I may never be healed in this world and understand that complete healing takes place when we meet the Lord face to face. I hold fast to the knowledge that should healing might not happen here, that God's grace will continue to sustain me. Please be bold in your prayers for those you know who suffer any illness. And, in that same spirit of boldness, pray for a cure! I'm tired of "here we go again."

Pastor Margaret

Saturday, January 01, 2011

Happy New Year!

When the Rose Parade is on TV I know it must be New Year's Day. Attending in person has always been on my "bucket list." I am amazed at all the creativity and hard work exhibited. Shortly, we change channels to watch football. Wouldn't you know that three games we really want to see are at the same time? No matter. We'll be watching and cheering for Tom's alma mater in the Gator Bowl. Go Dawgs!!!

Last night as we were enjoying a quiet, candlelight dinner, I realized that for us, New Year's Eve is more about remembering than about looking forward. Maybe our ages are showing. It's not that we don't think about the new year presenting new opportunities or a clean slate, so to speak. It's just that we have such delightful memories from years past--and some memories that are painful as well.

Tom's mom loved the parades on Thanksgiving Day and New Year's. She planned her mornings around being able to watch uninterrupted. She would settle in her chair with the remote in one hand and the phone in the other so she call and remind us that "parades have started." My first thoughts when the Rose Parade came on today were of Mom. One memory of her led to another and another and another . . .

Tommy and Liz have a house full of company--nine children and five adults. In the early years of their marriage, before they had children, friends of theirs from high school and college would arrive at their house with sleeping bags and pillows for a New Year's Eve celebration. None of the friends lived in the town where T & L lived and didn't want to drive home after an evening of merriment. At midnight Tommy would call to wish us "Happy New Year," knowing that he would wake us up with his greeting. Last night, in addition to the fourteen already present, two more joined them for dinner. We had planned to stop by for a bit, but it didn't work out for us to join them.

When Tommy and Marty were teenagers, several New Year's Eve gatherings for their friends were at our house. Ingredients for the evening were simple: lots of food, soft drinks and current board games. We would play with them until about ten, say our good nights and wait to be awakened by T&M at midnight with "Happy New Year." One year the youth group sponsors decided the party should be at their house instead of ours. What they didn't realize was that it really wasn't a church function. Our youth group was one big family that attracted others of T&M's friends and they gathered at our house for a party. That happened a lot, not just on New Year's Eve and last night I remembered that group of young folks, how special they were--and are today! Some of them were among those who celebrated with Tommy and Liz at their "spend the night" parties and one of the adults at their house last night was included in both of the earlier celebrations. I didn't wait for Tommy to wake me last night. I called him at 10:45 to say "Happy New Year" and that I was going to bed. Why didn't I think of that before?

That may be too much information, but thinking back reminded me of the friendships begun and nurtured in the youth group. It reminded me of individuals in the group, where they are today, what they are doing and how those friendships have lasted. I am thankful for our children's friends and thankful we are privileged to be included in their circle. I am thankful for a special youth director who was at the heart of the group. He remains close to them.

The holiday season of 1981 has been referenced recently when I wrote of our experience with a breast cancer diagnosis and surgery just three days after Christmas. In those days, that was not "drive through" surgery, but one that kept you hospitalized several days, so I was still in the hospital on New Year's Eve. That was the day pathology reports were shared and Tom planned to have two dear friends spend with me. Sybil came to spend the afternoon and Marilyn arrived in the early evening to spend the night. I will always be touched by the thoughtfulness of his arrangements and the sacrifice my two friends made to be with me that day. I still smile about an event of the afternoon. On that particular day patients from one wing were being transferred to another so deep cleaning could take place. Early in the afternoon, housekeeping took all my personal belongings to my new room and said someone would be back for me. Sybil and I visited, not paying attention to the time. About 5 p.m. an orderly entered my room, did a quick about face and left. We heard him in the hall stating, "There's someone in that room!" The staff had forgotten to move me. Later, Marilyn and I feasted on peanuts and popcorn in my new room. Tom had brought some for the nurses' station and for us to eat while we talked and watched football. It was an in-hospital slumber party. Those two friends helped me more than they will ever know. They continue to be a most important part of our lives. They came to California after cancer surgery there and they and their husbands come often to Tennessee now.

Precious memories come to mind at the close of this year. One memory leads to another and each reminds me of the One from whom all blessings flow. The new year has begun; we don't know what it holds. The slate is blank; the opportunities are many. I trust that this time next year we will have added to the precious memory bank. God bless you in the coming days!

Pastor Margaret