To My Friends:
We are now in the time of fickle weather. One day it is cold and feels like rain and the next it seems like summer is upon us. In some ways, it is a time of hope. A reminder of what is to come for those of us who merely endure the winter, for others, a time of despair, for the cool weather that will quickly be forgotten. God makes the middle seasons just to remind us of the extremes before we reach them. He allows us to find the right clothing, packed in the back of the closet. He gets our blood to adjust to the temperatures. He teaches us to layer clothes and park the car differently. He readies us without our knowing it. Then, when the real seasons of summer or winter hit, we are ready, and they seem so short. I am ready for the summer. Winter always seems long though this year it has not been severe or long. For me, summer would be a good season to keep. The consequences would not make it so but I can dream. Maybe in heaven, God will let me have summer all year, without the urban sprawl.
This summer will see the end of this round of chemotherapy. I have been on a regimen of five days of intravenous Topotecan and four days of oral Etoposide. These are the same drugs I took a year ago but intra-peritoneal, in to the abdomen rather than IV. It worked quite well the first time in removing much of the cancer, but six months later several small tumors, about 1/2 inch across, appeared in the subcutaneous and muscle areas of the abdominal wall. Only two were in the pelvis area.
The cycle continues, the next week, with Nupogen, to raise white blood cells for one week, and two shots of Procrit for raising red blood cells. At the end of this portion, I get a week to recover and then start the twenty-one day cycle again.
I am presently on the first week of the fourth cycle and the side effects are minimal. The chemotherapy keeps me agitated but there is little pain. I watch the drop of blood markers and know that the effects of that will trap the next week in fatigue and pain. The second week is shots and their effect is to try to build the blood but what I feel is joint pain from the shots and the chemo. It also destroys the lining of the digestive and respiratory tract making it painful to do the most rudimentary parts of living like eating and breathing. Therefore, the second week is a balance of drugs. The better we bring up the white blood cells the less pain. The more pain the more pain medication is necessary to function. In the last three rounds, we have learned much and I would admit that the last time I was able to balance everything pretty well. In the first round, the pain got out of hand and required a day in the hospital to learn to control it. The second round found the red blood count dangerously low and required a day in the hospital to get a transfusion of two units of whole blood. The third round was manageable from home and I actually felt good.
The third part of the cycle is a week of rest. It will be a time to rebuild. The hope is usually that the blood returns to normal and we can start chemo on level ground. That has not truly happen the last round because I contracted Shingles in the middle of it. Another something to add to the mix, I guess. God has been good and allowed this to be a mild case. I have not had a lot of pain with it and He put the shingles in an area of my body where the clothing does not aggravate it nor does it show to the public and frighten them. Therefore, other than having to be antisocial, because it is contagious, I have seen only a little more pain, irritation, and poorer results in the rising of the blood to normal.
That tells you where I am medically. I do not usually lay all that out to you but every once in a while I realize that all of my daily life is colored by this medical stuff. My social life is seeing doctors; my daily routine is taking drugs, monitoring my fatigue and pain levels, wondering how long I will be able to work today, and then allowing my body to control where I go and how long I will be there. Much of what we plan to do for fun is cancelled weekly, but we still plan, and every once in a while, we get to do it, whatever it is. We scheduled ourselves to go to Ventura for a few days that we found vacant on our calendar. We canceled it in favor or working in the yard. To us, to work and find the simple things done seemed like more fun. It certainly was nice to see a new tree planted, drip lines ready for summer and all the roses ready for the next bloom cycle. Ventura will always be there and one wonders why two people who are retired and can rest anytime they want need to go to Ventura to rest anyhow. I do need a few days and nights in the mountains soon. My bones cry for the smell of pine and my feet haven't felt the sweetness of a trail in a very long time. This calls me and we will get there soon. A good prayer request if you are looking for one.
As you can see, planning for future is still in the works. We are always looking ahead. The here and now is planned for us. The future is not. I was sitting at this desk the other day and feeling just a little sorry for myself. The cycle had gone full course and not truly improved. Each day was filled with fatigue and pain and I had done little to glorify God. It is easy at those times to look in and see only the hard parts. Then a question came to mind; "What if it never gets better than this? Can you live with it?" My answer, "certainly, and with a lot better attitude than this." I'm not so bad off; I just have to redefine the normal again. Take steps to see the important things and get off myself.
The steps Lee and I take are purposeful to see that our attitude stays right. We read scripture together every day. That allows us to see the unchanging truth of God in a very changing world. It gives us an anchor and shouts of God's love and faithfulness. It keeps us thinking in the same way all day long. Then we pray together at least twice a day. Prayer takes our focus off us. We have friends in much greater need of prayer than us: Our friend that share crops for us in Kansas just watched a hailstorm ruin this year's crop; Our 18 year old friend spends most of every week in the hospital in great pain for ailments that are unknown to the doctors. Several friends live with pain much worse than mine daily with no sign of cure or let up. Suicide and death surround us from others who have made wrong decisions along the way, their families reeling from the percussion of their actions. Praise is also due for the new babies born to many, new families, weddings, healings and just joyous times in the midst of living is a fallen world. We are blessed far more than cursed as we live for Christ. Prayer is where you remember that. As Lee and I lift our hearts to God, He melts the fear, reminds us of His love for us, and cements the love we have for each other. We wouldn't miss it for the world.
Therefore, yes, I can live with this. We had a CT scan done two weeks ago. It was not as we had hoped but it was not bad either. The scan shows that the cancer is arrested. It has not grown in three months. That change in behavior means that the chemo is affecting the cancer's life. It is our hope that this is the turn around and the cancer will begin to reduce in size. In doing so, it also means new decisions at the end of these three months. Do we continue chemo, change chemo, stop chemo, or try surgery. The last choice is the least likely. I would look like Swiss cheese by the time they took all the tumors but it would not affect any organ and there is no guarantee that they would get all of every tumor. Somewhat like pulling weeds and leaving a root hair that wants to be a weed again. Therefore, chemo becomes the focal point. The doctor asked me if my quality of life would be so affected that I would not do another round of chemo. I just sat there and cried for a minute. My mind ran a rapid video of what each day looked like in my life and then in the life of so many others; not just the sick ones, hurt ones or the lonely ones but also the lost ones. In that short reflection, God reminded me that my quality of life is magnificent. Chemo is a tent that I live in but what happens in the tent cannot be covered. God has a plan for me, however long that plan is. My quality of life is just fine.
I stopped the images and told the doctor that I would be fine with whatever we, as a team feel is worthy of our time. I am open to whatever God puts in front of me. I believe He is using the medical team and Lee to help me decide and to work through whatever we decide. I am not alone and am very comfortable with what we have done, are doing, and will do.
Prayer is incredibly important. Lee and I need to do it to focus and find direction. We need to use prayer to see our proper place in the world in which we live. We need to know that you are praying. Many of you write back and assure me that you pray. I am excited by that and it gives me great joy. I hope that as you pray for me you also pray for yourself. If you will tell me how to pray for you, my prayers for you will be much more specific. I need to pray for you because, as you have seen in this letter, your needs make mine look manageable. I don't know how you do what you do except for the grace of God. So you see, as we look at each other's needs, ours pale. That is grace. Please pray, please write, please make God the center of your life and your days. It is all good and God is great.
With all my love, Marj.
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