My Visit With Michael Reid

In November of last year, when I'd just been diagnosed, I discovered on one of the Christian stations Michael Reid's ministry. At that time, I liked to avoid Christian television because the preachers and teachers there were clearly not of God. I could see it in their manner, the way they talked, the way they walked across the stage. Something was not quite right just about the way they acted in front of the camera.

Amid all this hoopla, Michael Reid's television program stood out. The first program I saw was of a woman giving an account of her healing from an eye disease, which was destined to take her sight. Michael and his wife, Ruth, sat on the couch opposite asking questions and listening. I watched the program more and found the discussions informative and thought-provoking, such that I started mentioning it to Kirk.

At the time, Kirk and I were really struggling to find a church that we liked. I remember saying to him that the spirit I felt from Michael Reid's church was what I wanted to find in Frisco. Then I told him about the programs I had managed to catch randomly. A few days later, I decided to write a a prayer request e-mail to the Reid ministry. In the e-mail, I explained my diagnosis and asked for prayer. I think I also asked if there was any church in my area which might be affiliated with their ministry. About two days later, I received a response. This began an e-mail exchange between me and a woman named Meidre.

Though I had written other e-mails asking for prayer from other ministries, this was the first time I had felt as if someone actually really cared about what me and my family were going through. Eventually, in one of these e-mails I mentioned that I lived in the Dallas area. Almost immediately, Miedre offered that Michael and Ruth Reid were scheduled to be in Tulsa over the Thanksgiving holiday and would surely be willing to pray for me if I could come there.

I said I was interested, then she sent me two phone numbers for contacting Ruth, who made all of Michael's appointments. She said she'd spoken with Ruth about my situation and that she'd be looking for my call when they were back in the states.

Well, Thanksgiving week came and went, but I did not call. I'm not sure why. I think I realized it just wasn't going to be possible, since I was going to Sante Fe for Thanksgiving. For some reason, at the time, it just didn't seem that urgent.

I never forgot about the offer though and found myself one day about a week ago making the call. To my amazement, Ruth called back within the hour. We talked for almost an hour. And just talking to her--a cancer survivor herself--was really encouraging. A few more calls later and the appointment was set. I had their address and was set to make the three-hour trek.

Kirk and I decided we'd make an adventure of it. We'd camp out in the pop-up some place near Tulsa, then drive into Tulsa for my 2:30PM appointment with the Reids. We left Friday after Kirk was home from work.

Late that night, we pulled into Arrowhead State Park. There was plenty of spaces, so we set up in the one that looked the nicest. Little did we know that in the morning we would awaken to a beautiful view of trees overlooking an enormous lake. The next morning, we started toward Tulsa.

Once there, we found the Reid's house in a neighborhood of nice houses with an English air to them. It was still early, so we drove around Tulsa for a bit. At 2:30PM on the dot, we walked up to the front door and knocked. Through the etched glass of the door, I could see Michael Reid coming to the door with Ruth behind him.

There was nothing fake about these people. They shook both of our hands warmly and welcomed us in to sit in their living room. Ruth started by saying that I should tell Michael my story and that the story she had shared about her own cancer had given me confirmation that I needed to go ahead with the transplant. I corrected her then, saying that I wasn't sure of that confirmation and that what I wanted, of course, was complete healing. She said, oh, I'm sorry I thought that's what you said. And I realized that this was the main gist of the conversation we'd had. That she had gone through an aggressive treatment for breast cancer after being prayed for by Michael--much more aggressive than she could have received in England it turned out.

Then the conversation shifted somewhat. I told my story of the cancer. How I found out. The treatment I'd already received. And on. I told them about our struggle to find a good church. I talked about Hope Chapel, the last good church I'd been a member of. I told him about how the church had eventually fallen apart because of in-fighting between the pastor and the elders. Then I talked about feeling lost for a while, then trying this doctrine and that for a series of years. He had personal relationships and opinions about all the ministers I mentioned, until I began to see that Michael Reid had a much simpler approach to faith and grace.

As I became more comfortable, Michael began to talk to me about my anxiety, my fears and my concerns. He said many things about God's grace, power, faith. What amazed me was the simplicity of his message. You can trust God. God loves you. Grace is a free-gift, just as healing is.

I remember at one point describing to Michael the hair I'd once had: long, blonde, curly and beautiful. "And you'll get it back," he said. I expressed concerns about caregivers, since the procedure would require me to have someone with me in Houston. I was concerned that Kirk would not be able to be there the entire three months. Michael said, "If God can make the world in six days, don't you think he can do something as simple as find you a caregiver?"

When we had been there over two hours, Michael said he was going to lay hands on me and pray. He said the prayer would be simple, but the effect would be great. I can hardly remember the specifics of the prayer, only that I felt as if he prayed for everything in me that needed healing, not just the cancer. Even as he prayed, I was filled with a wonderful peace. After so many months of anxiety, that was a great relief. We said our goodbyes and I left knowing that God was in control and that I was going to be healed through the transplant and through God's intervention in the cancer.

It is still a process. The trip back to the campsite I was touched by brief moments of worry. Would the anxiety come back? But I kept remember his statement, "God loves you. He healed Ruth and He's healed you. In fact He healed you two thousand years ago. For by his stripes, my bible says, we are healed." As Kirk drove, I was quiet and thoughtful. I remembered again Michael saying, "I believe cancer should be treated aggressively. Listen to your doctors. They have wisdom for your healing. Healing is God's gift. Accept it and move on with your life. It's nothing to God to heal cancer. Just move on with your life."

Michael and Ruth gave me stacks of DVD's, books and even his latest book, which I mentioned in passing. I started reading one of the books in the car. It, too, filled me with hope, since Michael is known throughout England and other parts of the world as a great healer. When we arrived at the campsite, I lay down on the bed and went to sleep, even though it was early. I was just so relieved.

The next morning, I awoke still at peace. I sat outside in the morning sun reading, when I realized I wasn't wearing my reading glasses! I got up from the camp chair. Maybe the print in that book was large. I found smaller print and found I could read it, too! I had just been reading in my bible the day before, I was unable to make out the small print. I called out to Kirk my new discovery and I haven't worn my reading glasses since.

I believe God gave me the miracle of renewed sight, so that I could rest in the big healing the transplant and Michael's prayer would do. For most doctors don't say that the allogeneic will make it so the cancer never comes back. I think differently now. I believe I will be cured.

Salvation Story

When I was 12 years old, I attended a Baptist church with my dad, his new wife, Pat, my sister and my two new step-sisters. Being the oldest child, I was given the task of watching over my sisters at children's church while my dad and Pat went to the regular church service. Though I remember nothing of the sermon or activities from that day, I do remember, at the end, that an altar call was made. Not knowing what I was doing but wanting to do the right thing, I stood and found myself walking to the front with my sister. Once there, all the kids who responded were shuffled into groups separated by age. Since I was the oldest among those who came forward, I ended up in a room alone with a prayer counselor all to myself.

She asked me if I had any questions before I prayed to receive Jesus into my heart. I remember thinking that I had no idea what she was talking about. But I was curious, so I let my questions flow. What did it mean to let Jesus into your heart? Would Jesus appear in the room and step inside my body? Why would I want to do this? And on.

I could tell by her reaction that the counselor didn't know how to answer. Then, she said she'd be right back with someone who could better answer my questions, and she left the room. There was an open window in this room, where I could hear children playing and see adults making their way to the children's church sanctuary. I felt foolish for having so many questions and irresponsible for leaving my sisters, so I crawled out the window! That was my first experience of thinking about receiving Jesus as my Lord and Savior!

Two years later, at yet another youth meeting in my step-mother's Baptist church, I had the opportunity, once again, to respond to an altar call. But this time I didn't jump out the window. I said the prayer of faith with a young girl who lead me through it. I remember that I wept openly as I tried to repeat without question the words that a young youth counselor gave me to say out loud. Within the hour, I had done it: I had become a born-again Christian.

With my teenage years, however, came turmoil. And I forgot the prayer I'd made that evening at youth church. Part of the problem, I know, was the fact that I had no incentive to study the bible, since I was not a regular attender at the church where I had received the gift of salvation.

It wasn't until I was a Junior at UT Austin that I had the chance to re-commit my life to Jesus. There was a woman, named Dorothy McGuire, I had befriended in one of my English classes. I remember thinking how beautiful she was. For she had curly jet black hair and the sweetest light blue eyes I'd ever seen. I was living a crazy life: partying heavily on weekends, taking 21 hours of classes and getting sick because of it. Dorothy made it clear that she was a Christian, but she was also so accepting that I felt comfortable being with her. Eventually, we started jogging together. In those days, I was so fit, I could hold a conversation while jogging! So, while we jogged around and around the track, Dorothy would talk to me about Jesus.

Her sister, Lucy, (also a dedicated Christian) and I eventually became roommates, though I had still not re-committed my life to God. One night, Dorothy came to stay with us. She had graduated and moved to Dallas with her husband, who was a minister in the Episcopal church. In the living room of the tiny apartment, Lucy and I rented in Austin, Dorothy confronted me about my beliefs. Lucy had long gone to bed as Dorothy and I talked until 2AM. Finally, we prayed. At that moment, I re-committed my life to Christ. And it was not an easy prayer. The main difficulty was a boyfriend I had at the time, who did not believe in radical commitments to God. I knew accepting Jesus meant rejecting him, and I was hardly prepared to do that. Nonetheless, I did and when the prayer was finished Dorothy prayed for her sister, who lay sleeping in the next room.

"Lord, touch her head with the light of the holy spirit and let that light fill her all the way down to her toes," Dorothy said. She was a spirit-filled Christian and a believer in the gifts of the spirit. I didn't realize it, but she was praying for the holy spirit to fill her sister's life more fully.

Finally ready to sleep, I made my way to my bed in the same room where Lucy slept. The minute I sat down to pull off my shoes, Lucy sat up in the bed, groggy and confused.

"I just had the strangest dream," Lucy said. Overhearing her sister, Dorothy came to the door. Lucy continued: "I dreamed a ball of white light touched my head and rolled down my body until it came and went out by way of my toes."

I was amazed, but it was only the first of a series of encounters with the power of the holy spirit. The next year was amazing in many ways. I learned a lot living with Lucy and attended holy spirit classes at the main Episcopal church downtown. At the culmination of the meeting, several of us were prayed for to receive the holy spirit. I had a dramatic response. I retreated to the hallway, so they could pray for the next person. I must admit I was giddy with the power of God. So giddy that a young man I ran into in the hall thought I was drunk. Just like the disciples were thought to be drunk in the story of Acts!

Since then I've been a believer, but for one or two years in which I found myself looking for that window and crawling out away from God. But I've always come back. And I am back today.

New Thoughts

My soul-searching continues as I seek wisdom about the second transplant. However, yesterday I had a breakthrough (on many levels) after talking and praying with others.

By all accounts available to me, I am in remission. This will be confirmed, I'm certain, when I return to MD Anderson on May 7th. I found out from Dr. Lindsay, a PA I've had extensive talks with from the transplant team at MDA, that before doing an allo they conduct tests to re-stage me. In other words, to find out where I stand with the cancer.

For this, Lindsay told me I'll go through all the tests I've gone through before: blood, bone marrow biopsy, and MRI or some other scan most likely. I've decided that when they tell me I'm in remission, I'll find out what treatment, if any, they would further suggest whether its the transplant or whatever.

Then, I will make my decision concerning the transplant. Though, in all honesty, I have sought peace concerning the 2nd transplant (the allo,) I must admit it has been fleeting. Once in awhile, since I started to reconsider the 2nd transplant, I've felt moments of peace..glimpses of the good that doing such a procedure would eventually do. But I often have greater peace when I think of all I've already done with the auto-transplant.

The word from MD Anderson is basically that I must "go with my gut." For they cannot say--based on the "good" but not "great" results of the trial--that this tandem auto/allo is the way to go. And the mortality rate, I know, makes them balk at being completely supportive of any decision I make either way. Only Dr. Popat ever said that he would have his own daughter do this treatment, if she needed it.

Know this for certain: whatever choice I make, I know it will be the right one.

This weekend I'm going to see a pastor named Michael Reid who has laid hands on thousands of people who've gotten well. I was going to go see him at Thanksgiving last year, but decided instead that I needed to be with my family. His main ministry is in England, but he spends a couple of weeks throughout the year in Tulsa, Oklahoma. I felt I should call and try to set up another meeting. I left a message on an answering machine, but received within the hour a return call from his wife, Ruth, who makes all of his appointments.

We talked for almost an hour! She told me about the breast cancer she was diagnosed with in 1988. This was right before they were to go to Argentina for several months of ministry with various churches. They decided to believe she'd been healed and go on to Argentina. Once there, Ruth was tested to make sure she'd been healed, but it turned out that the cancer was still there. So she started treatment in Argentina. She had chemotherapy and radiation which "nearly killed her," as she said, until Michael returned to England so as to get the house in order for her when he returned to bring here back home. Just as he was about to come and get her from Argentina, he was struck suddenly with influenza B. Forced to go to the hospital where he was quarantined for several weeks, Ruth remained in Argentina and completed her treatment with strangers caring for her. Finally, Michael was well enough, and he returned to bring her home. By this time, Ruth had pretty much done all of her treatment in Argentina.

She has been cancer-free for 20 years since then. During a check-up with her doctor at home, the doctor asked her if she wanted to know why she'd had to have her chemotherapy and radiation in Argentina. It turns out that this sort of aggressive treatment with the specific infusions, etc. she was given was not allowed in England at the time. Argentina would have been one of the few places in the world where she could have been treated so aggressively at that time.

So they believe that God works many different ways to heal a person. I thought this to be a very wise approach. And that is what attracted me to Michael Reid and his ministry.

Reaching Out to Old Friends

For more than ten years, I attended a church in Austin called Hope Chapel. The memory of this church I attended right after graduating from UT has, in recent weeks, returned to me. Especially one man, who was an elder there, named Armond. There were others--roommates, friends, mentors, teachers--I remember with fondness, but Armond was really special.

It's incidental to this story, but I remember once coming to him frightened that I wasn't going to be able to pay my rent. Without hesitation he asked, how much do you need? I had to think about it, but finally came out with my answer. Within seconds the amount I needed was being handed to me. "How can I repay you?" I stammered. "You won't. It's a gift. You need it? It's yours." And that was just one example of Armond's graciousness, not just concerning money, but his time and energy.

Today, I decided to google his name. The first entry that popped up (amazingly) was a string asking for prayer for Armond in 2004 concerning some vertigo he was experiencing. The string originated from a church I'd never heard of in Austin, but I quickly googled the church and found its phone number. Not expecting to get anyone, I immediately found myself talking to someone in the office of Red River Church, who happily gave me a phone number for Armond. She also told me the news I couldn't believe: Armond's wife, Jo, had passed away two years before.

To my surprise, I also discovered that Renee, an old friend and roommate of mine from those days, is the wife of the pastor for Red River Church! And I was able to get her phone number, too. But, unfortunately, Renee, too, was reeling with an unbelievable development: she has a rare form of cancer that has somehow progressed to Stage IV.

I was stunned.

The call to Armond was everything I hoped it would be. For he is a very wise man. We must have talked for forty-five minutes. He had so many things to tell me that brought peace to my heart. At the end, we prayed together on the phone.

I also had the chance to talk to Renee. As it turned out, she will be at MD Anderson at the same time I'm going on May 7th. We talked a long time, as she explained her situation. I still can't believe it, but she's been suffering with a type of skin cancer called MF. We talked about healing and she shared that she had a blog. I went to it while we were talking on the phone. It is http://reneesmf.blogspot.com.

When I hung up, I found myself praying hard for Renee. She is one of my favorite people, and such an incredible person. She has three children in their teens. I prayed for her so hard...well, it was unbelievable. I felt my heart turn to a faith that came from a bright and sweet place so deep in my spirit that it's hard for me to describe.

I felt the presence of God and was filled with hope...for Renee but also for myself.

I'm Not Sick, I'm Just Bald

Lately, I've found comfort in a phrase that came to me while I was praying one morning.

"I'm not sick; I'm just bald."

I didn't realize it until that moment, but it's hard to be bald. I think its hard (especially since I'm a woman) because it means that everywhere I go people have to think I must be sick. What else could they think?

Well, they could think I'm a punk rocker or alternative kind of chick, like Shanay O'Connor. They could think I've got more hair under my hat than they can see. Or, more likely, they could not even notice.

At least I've got a good hat; that's all I can say. One good hat. Sometimes I wear a bandanna (when I'm weary of the hat,) but my son and husband say, hands down: the hat is best.

It's a black hat with a rim all around, that I turn up in front. I bought it before I even needed it, along with some others. But those others just don't cut it. This black hat is the best.

I actually like it so much, I tried sleeping in it. Not comfortable. So I tried a bandanna. That was funny: there's a little knot at the base of your scull all night; plus, it keeps shifting all night.

What I probably need is one of those sleeping caps. But I've resisted buying one because I feel like the character in one of those Christmas carols. (And really old.)

Thankfully, I'm starting to develop a bit more of a fuzz. Not exactly a five o'clock shadow, since it's blond and the hairs can't be seen...but a 2-day shadow. Still...it's almost invisible, since it's blond, right?

Whatever the case, I keep saying to myself: I'm not sick, I'm just bald. That's because I'm not sick. I'm one of those in complete remission even before going on to the allo. And that's a blessing I thank God for.

As for hair, I'll thank God for that when it grows so long that I don't need my black hat.

Update

Today I received clarification on insurance issues involving the allogeneic transplant and a re-evaluation at the Myeloma Institute in Arkansas. Insurance issues aside, the main concern is and will continue to be until I know for sure, whether or not the allo is something I should do at all. Setting aside those concerns, however, I can now see in part what my options are.

Insurance will not pay for a tandem transplant, unless I do it with MD Anderson. Under the auspices of a trial, Aetna was able to approve payment for the 2nd transplant. If I were to go anywhere else for the allo, I would not longer be part of the trial as it is set up at MDA.

With this new information, I felt it would still be good to get a consultation from the Myeloma Institute in Arkansas. Aetna will not pay for a full repeat work-up and re-evaluation at Arkansas, though they would pay for a consultation. Unfortunately, Arkansas will not do a consultation without also doing new MRI's, surveys, biopsies and whatever. So, if I want to be re-evaluated by Arkansas, I'll have to wait for another time.

When it comes to completing the allo-transplant in Houston, work situation has been, for me, an issue. I know that my health is ultimately most important, but I cannot help but see this as a major concern. Then it occurred to me recently: I've been trying to figure out the caregiver situation without reaching out to family and friends for caregiver coverage of the weeks that Kirk cannot be in Houston. I want to remedy that. So I'm asking for your help.

The procedure will take at least 100 days. From looking at information given to me by MD Anderson, the really intense time in the procedure is the first six weeks. The rest of the time is maintenance. I can't know right now how much time Kirk can give. My mom has said she can come to Houston for one week at a time. Perhaps one week in July and one week in August.

So, here's my query for friends and family reading this blog: is there a block of time you could give to be my caregiver while I'm in treatment at MD Anderson? If I do the allo, it will start most likely in mid or late May, then extend through the summer months. This is fortuitous since more people seem to have time in the summer than at other times of the year. I would think that caregiver help would most be needed starting with July and including August and possibly a few weeks in September.

For my peace of mind, if you can help, please e-mail me (swilder@ccccd.edu). I feel as if this is so much to ask...and it may not be necessary. But I've got to figure out what my options are as May 7th draws near.

Still Waiting to Hear From Arkansas Myeloma Institute

This morning an overnighted packet arrived from the Myeloma Institute in Arkansas. I have a (tentative) appointment for a week-long re-evaluation that starts on Monday at 8AM, but I am starting to think I'll be reducing that to a one-day consultation instead. The reason: mainly insurance, since Aetna (I've been told just this morning) will not pay for a complete re-evaluation again.

I also found out from my Aetna transplant coordinator that if I'm going to get an allo-geneic I'll have to do it as part of the trial with MD Anderson. I still have time, of course, when it comes to re-thinking the allo because the research nurse at MDA said I had 120 days to start the allo (of which 30 days has already passed.)

On May 7th, I'll be going in for my monthly post-transplant evaluation at MDA, so it is then that I'll have to begin openly voicing my concerns and problems with getting an allo out-of-town at MDA. And, even if I refuse the allo, I know they will then want me to do a 2nd auto. I do not, of course, HAVE to do either. This IS a trial, after all. Not standard treatment. I have already done what many people do to bring the MM under control. And, as far as I can see, it is under control, if not completely eradicated.

The nurse and schedule person at Arkansas is going to get back with me soon. I'll know more as the day progresses.

God bless this mess.

UAMS: The Myeloma Institute for Research and Therapy

On May 7th I have a follow-up appointment with my transplant team at MD Anderson. If I were going to continue with the 2nd allo-transplant, I'd probably start it on that date, as well. Whatever the case, I've got to continue with follow-up visits there for three more months.

There are three concerns I have about doing the 2nd transplant (if I do it at all) at MD Anderson. (I vacillate a lot about this, so bear with me.)

One, being in Houston for the 3-4 months it would take to complete the allo-transplant is daunting for family reasons. Two, I am beginning to have personal concerns about MD Anderson. Three, I have pretty much decided that the Myeloma Institute in Arkansas has a more expert opinion about MM and my own further diagnosis/treatment (if I need it.)

I've made appointments at the clinic in Arkansas, as well as Baylor here in Dallas. Even though I'm confident that I'm in remission now, I want to consult about the 2nd transplant with people in the know. That means visiting with the doctors at Baylor and, more importantly, going through a whole new battery of tests in Arkansas. The tests at Arkansas would take five days, so I'm having to see if my mom can stay with me for during some of that time. Kirk can come later and have to take less time off from work.

I'm leaning toward consultation at Arkansas more because they are experts in Multiple Myeloma. If interested, you should check out their website:

http://www.uams.edu/

There's a particularly compelling video on the home page that I recommend. It gives their success rates for complete remission, and they sound very good indeed. My interaction so far with the Arkansas clinic has been quite positive. They are much more about individualized attention than I experienced at MD Anderson overall.

I mean, MDA did a good job on the auto-transplant. I thank them for that. The nurses I depended on were especially wonderful. But there is incredible information to be gained from the Arkansas clinic--information specific to Multiple Myeloma.

Meanwhile, I'm feeling pretty good, both emotionally and physically. I reach out to God daily and feel more and more the peace which surpasses understanding. I know I'll make the right decision. As I am already beginning to do.

Searching For and Finding Peace

During the camp out Friday night, I experienced a continuation of the depression that overwhelms me at odd times during the day and especially at night. I called my sister, Lisa, and we talked for an hour about the possibility of going through the allogeneic transplant. The conversation was emotional, but encouraging. And when I was back at the pop-up to talk it over with Kirk, I felt peace about my situation for the first time in weeks.

But, later that night, I found myself again unable to sleep, restless, even tearful. The pop-up was too cold for me, and Kirk awakened to look for the space heater. Once it was going and I had taken two Benadryls, I slept the rest of night without dreaming. But my restlessness and depression returned once again at waking.

The three hour trek to Austin was agony. I called my mom on the phone, but the reception was awful. Once at Central Market in Austin where I would consult with my friend, nutritionist and fellow cancer survivor, Mark Anthony, I found comfort. Mark reminded me that I had been living on adrenaline for the weeks during the auto transplant. That coming off of that adrenaline would feel like depression. This made sense to me. And I had heard, but forgotten, that fact from a cancer retreat in Arizona.

Then Mark laid out his ideas for eating healthfully while in recovery (and beyond.) We ate at the cafe, then walked the food aisles. As he pointed out foods, I took notes. Slowly, I began to feel the tight space in my chest loosen as Mark explained my options. I began to see that my depression, in part, stemmed from MDA's prohibiting me not to eat fresh fruits and vegetables. Cooking every fruit and vegetable was wearing me down, giving me more reason not to eat. But Mark showed me juice brands that are pasteurized without additives and presented recipes to me that I had not considered.

In addition, Mark explained a really simple way to remedy my lack of appetite, by separating preparation of the food from the eating of it. Of course, it helps that Mark has a Ph.D. in Nutritional Sciences from UT Austin, but his survival of colon cancer helps even more. He not only knows how to eat during recovery from cancer, but he's experienced it since he endured chemotherapy and five surgeries during his own treatment.

I left Central Market feeling better, as we drove three hours back to our campsite. Once there, I laid down on the bed for a while, then tried to eat. I reminded myself it was normal as I felt again the depression falling over me slowly. Kirk coaxed me outside, where I sat by the fire and gazed at the huge expanse of night above my head. The moon smiled at me. The stars twinkled sweetly. Back in the pop-up, I read my bible and went to sleep, finally peaceful again.

By morning, the strange malaise which had dogged me all weekend was gone. "I'm in remission," I said. Suddenly, all ideas I had of either doing or not doing the allogeneic transplant were like leaves flowing past me in a stream. "Remission," I said again, and peace filled my body. Then, I finally understood.

Whatever I choose to do, I can know that I'm in remission. Remission. A beautiful word. A real and true thing. I am in REMISSION. Thank God.

I was peaceful the rest of the day and even until this moment as I write this blog.

Leaving at Noon

The pop-up is popped, packed (mostly) and ready to be hooked up to the car. The weather is beautiful: warm and sunny. And I feel excellent, except for a persistent lack of appetite, slight nausea. But I've been going outside for a 15-20 minute walk consistently for the last few days, and I feel ready for hike in the woods (even if it is shorter than I'm accustomed to) and getting a little fresh air, sun.

I am so looking forward to consulting about my diet with Mark Anthony in Austin on Saturday. More on what he says when I return Sunday or Monday.

What's more: I've been able to look courageously at the allogeneic transplant. Though I think, if I proceed with it, that I'll do it here at Baylor in Dallas. I did some research as I walking talking on the phone to the transplant coordinator at Aetna. She is a nurse, and we both looked up marrow.org, which tells how many transplants various hospitals have done in the last year or so. Baylor, apparently, has done as many for MM as MD Anderson. That surprised me. Also, I will be so much more at ease doing this procedure AT HOME. Four months in Houston will significantly derail Kirk's work situation, which would NOT be good as it would mean a loss of this great insurance I have with Aetna. (This is just a feeling Kirk and I have, however. His work has not said this "in so many words" to him.)

Of course, God can make all things happen. So, if I had to return to MDA for the allo, so be it. I'm just reviewing my options.

As for Baylor, I've already consulted with a doctor there that I like. His name is Vance. He's youthful and extremely energetic. I like that in a doctor.

Camping Weekend

Today the pop-up camper will be pulled from its niche in the side yard for the first time since last summer. We'll stock it with stuff and be at Fairfield State Park by tomorrow evening. Saturday we'll get up and take walk through the woods. Then we'll be off to Austin for a visit with the nutritionist and friend of the family I've spoken of in other blogs. We'll return to our campsite for an evening under the stars, then pack up and leave by noon on Sunday morning.

I love camping, and I love Austin. What more could a girl ask for?

Photo: Kirk in the pop-up eating lunch.

Correction

If you read my blog of an hour ago (which I have since deleted,) it contained information that I construed incorrectly. Please disregard.

No Abnormal Protein Bands Detected

My local oncologist is out of town; the next available appointment is the end of May. Last week, I realized there was no way I could wait until then to know if I'm really in remission or not. So I demanded a blood test and urine analysis be done anyway. The results came in Monday. It's taken me until today to absorb the good news.

In the "Interpretation" section at the end of the results it states: "No abnormal protein bands (Bence-Jones Proteinuria) detected." What is "Bence-Jones Proteinuria"? I googled it; and, in several places, it says:

Bence Jones Protein:

"An abnormal protein with unusual thermosolubility characteristics that is found in the urine of patients with MULTIPLE MYELOMA."

I went back to look at the results from previous tests.

At the end of September, this abnormal protein was 3.7.
At the end of October, with MD Anderson, it was 5.5.
Beginning of December, (MDA) it was 1.6.
Early January 2007, (MDA) it was .8.

The lowest this protein got before the transplant was .5.

Now, it's nonexistent. I stared at the section where these proteins are reported. None of the usual numbers were there. Just a whole new set of numbers without the usual ABNORMAL or H (for high) or L (for low) beside it.

In fact, on this analysis, NOTHING is abnormal except two cryptic things. Something called AST, and something called ALT. I wish I knew what these were. However, my doctor's nurse said they have something to do with my liver, which makes sense because of the high dose chemo from the transplant.

Of course, in the second analysis, my white blood, red blood, and hemoglobin are still not normal. But that is what my friends at MDA said would happen. That it would take a while for all these counts to rise to normal. I need 1-2 more points on all these counts to be in normal range.

I think all I need now is for my oncologist to say, "You're in remission." That may not happen until the end of May. we'll see.

But I'll take "No abnormal protein bands detected" for now and say PRAISE GOD!!!!

(Photo: sunlit monument over our campsite at Zion Natl. Park last summer.)

The Case of the Missing Nutrition

During the auto SCT and even during the months before when the cancer was being managed at MD Anderson in Houston, I rarely received guidance as to nutrition. In fact, what foods I ate was of little concern to anyone at MDA until those weeks after the SCT when I was asked to not eat fresh fruits and vegetables (of all things.) The reason: uncooked produce contains toxins that immuno-deficient people (which I was and, supposedly, still am) cannot tolerate.

Of course, such a restriction is counter-intuitive, to say the least. I was raised to love fresh produce. My mom had an organic garden, for heaven's sake. (Above: photo of Organics shop--finally--in Dripping Springs--where Jacob grew up.) But, apparently, foods (even organically grown foods) are fertilized quite often with manure or other waste products. The toxins from this soil grow up into the plant and are not removable unless the fruit or the vegetable is cooked.

This restriction is further complicated by the fact that I have the appetite of a small bird. I can never eat all of anything I put on my plate. For this reason, I am still losing weight...but that's not always good when you're trying to raise blood counts (WBC, RBC, etc.)

Despite this, I realize I must find my way through these restrictions and complications to a healthy diet that grows white blood cells and the like.

I've noticed so far that the following things work for me:

Vegetable-based soups
Cooked apples
Mashed potatoes
Chili with beans and rice
Simple meat dishes, like chicken, turkey and the occasional steak
Tart cherry juice in water
Whole wheat crackers (for nausea)
Cottage cheese
Goat cheese

But that's it. A dear friend of the family who is also a gifted nutritionist (mentioned in previous entries for his book Gut Instinct) and cancer survivor himself has been giving me nutritional advice for years. Now I am hoping he'll guide me even further, as I try to figure out how to eat again.

The Romance of the Move

(Pop-up Camping: another way to experience the joy of "the move" and lack.)






Yesterday, I began de-cluttering my house by cleaning out double closets in my study. Inspired by the fact that my dad and his wife are (probably) moving back to California from Colorado this summer, I decided to ask myself the following question for each item I considered keeping, storing, selling or tossing:

Do I want to move this some day?

Unlike my dad, I'm not moving this summer. But I DO have what I would call a RELATIONSHIP with moving. That is, I have, in the past, loved moving. The romance, I know, comes from my essential being, which desires change, newness, and heart-pounding risk. As well, my love of the move centers on my well-hidden and yet powerful (even abiding) interest in minimizing my possessions. The move, in my experience, brings all these things to fruition.

For you see, even if time or energy does not permit the expulsion of material goods before the move, lack of time and energy after the move will certainly facilitate the illusion of such expulsion for at least a couple of months. Hence, if I avoid unpacking too much, I can at least FEEL as if I have less. And this lack--this simpleness--this smoothness in the essential work space devoid of personal objects--is, I find, cleansing.

So, though it is my desire to move SOME DAY, I stay put and accumulate while giving myself (now) respite from materialism through the act of therapeutic de-cluttering.

"Do I want to move this some day?" I ask myself as I extract bits from past projects I adored, students I once worried over and clothes I keep for sentiment's sake.

And quite often the answer is: "No, I don't want to move THIS, but I DO want to move."

Turmeric Force (and Resveratrol Synergy)

After extensive research, I decided to begin taking today two supplements, Turmeric Force and Resveratrol Synergy. If supplements that battle Multiple Myeloma interest you, there are many sites where you can find information.

Two, in particular, I found extremely readable and well-documented, not only for studies on turmeric (or curcumin) and Resveratrol, but other alternative treatments for MM:

http://www.beating-myeloma.org

http://margaret.healthblogs.org/

Beating-myeloma.org is essentially a forum for alternative treatment approaches to MM, whereas Margaret's blog, entitled "Margaret's Corner," contains a diary of Margaret's adventures in MM with quick links to studies about these and other supplements or alternative treatments. I recommend both as level-headed and well-written sites that really helped me navigate the "alternative" world of treatments for MM.

Interestingly, a study on the effect of curcumin (a major ingredient in the spice Turmeric, pictured above) was conducted at MD Anderson. Dr. Aggarwal is the main contact, and I e-mailed him directly for dosage advice at aggarwal@mdanderson.org. Aggarwal wrote back to me quickly and suggested I consider 500 mg of both Turmeric Force and Resveratrol. I'll report the effect of these supplement, if any, as they unfold to me.

I suppose you could say I'm particularly sold on the healing properties of curcumin/Turmeric because, while undergoing chemotherapy/dexamethazone treatments from November of last year (2006) to January of this year (2007,) I ate Turmeric spiced foods every day. At the time, I was doing it on the advice of a nutritionist and good friend in Austin named Mark Anthony (who wrote Gut Instinct, a really sensible and fascinating book about diet.) Turmeric is also suggested by Andrew Weil, whose book Spontaneous Healing is a must-read for anyone wishing to get healthy.

It may be that eating Turmeric for three months nearly every day contributed to the free-fall my m-Proteins underwent in those early months of my diagnosis. It may have been a combination of alternative measures I used (and am using, but for six weeks when I could not during the auto transplant) which have brought me success so far. One can never be certain. But I don't believe supplementing with Turmeric and Resveratrol can hurt me. Certainly, just eating more Turmeric (found in traditional east Indian food) can't hurt at all.

Of course, Turmeric is very spicy--as are most east Indian dishes. Since I'm still a bit nauseated, I'm introducing this spice as I feel I can. Some people just don't like the taste. (One guy at the forum said Tumeric tastes like dirt to him.) Thankfully, I love Indian food, so I don't have that problem. All I need to do now is learn how to make my own Indian food. I do love curry, as well.

I used to eat all of these spices on a combination of broccoli and brown rice. But that's something I can't even think about eating without my stomach leaping inside of me. So, like I said, I'm taking the supplement and putting Turmeric into whatever I can (such as soup.) I seem to tolerate that pretty well, right now.

The Resveratrol is essentially Grape Seed Extract (pictured above,) which I've known for years as a great way to get rid of a bad cold. Since my immune system is apparently the area of my body most affected by MM (though I'd never know it--I've hardly had a single illness throughout my life AND throughout this cancer,) I can see what benefit Grape Seed Extract/Resveratrol would have.

Like I said of Turmeric, I'll report as the effect of Resveratrol unfolds to me.

Nothing Ahead, Nothing Behind

There's an ancient story I teach called The Epic of Gilgamesh. In it, Gilgamesh, part god and part man, takes a journey into the underworld to bring back from the dead a friend whose life was taken unjustly by a goddess. At one point, as Gilgamesh is traveling league by league into the underworld, there is a long passage in which the storyteller states repeatedly that Gilgamesh "...could see nothing ahead and nothing behind him."

Despite this, once Gilgamesh arrives in the underworld he does gain, for his trouble, wisdom that he would not have gained if he had not made the journey.

I used to think that going through this cancer was going to give me, if not wisdom, at least, information, or rather, perhaps, things I needed to know.

But now that I am in the darkness, I am much like Gilgamesh. For, like him, I seen nothing ahead or behind. Gilgamesh could not have known when he was going through that darkness that there might be some worth, however small, in going through that darkness.

I am hoping I know better. That is, I hope I can have faith in all those verses of the bible that repeatedly tell me that God has a plan for me. In fact, I can do more than hope, in the greater part of me. For I actually believe that all will be well since it is well with my soul.

Yet I am weak. I feel sadness all the same, despite my understanding that God will bring me through this.

Complicated, isn't it?

And, I suppose, the only reason I share this irony is to make clear how complicated things can be for those battling cancer. Especially when the treatments have ended and life (it's been said) resumes normally.

By Such Things I Live

14 I cried like a swift or thrush,
I moaned like a mourning dove.
My eyes grew weak as I looked to the heavens.
I am troubled; O Lord, come to my aid!"

15 But what can I say?
He has spoken to me, and he himself has done this.
I will walk humbly all my years
because of this anguish of my soul.

16 Lord, by such things men live;
and my spirit finds life in them too.
You restored me to health
and let me live.

Isaiah 38:14-16

Depression

In December, just two months after diagnosis, I attended a retreat for cancer survivors where I met women who reported feeling depressed after their treatment was over. I wondered at that. Believed it was possible. Decided it wouldn't happen to me.

But it has.

Now that I am home from the autologous transplant, I'm feeling really down. I can't shake the feeling that I am no longer who I was. That beautiful girl with so much life ahead of her. No, I am the sick, hairless, sad, and doomed one. My life is not my own. It belongs to the doctors, the treatments, the pills.

Such knowledge is unspeakably difficult for one soul to handle. I am overwhelmed, consumed and defeated by it.

I cry suddenly, whether I am driving, watching television, or speaking with my ex-husband.

Yet, I know, from being in this place before, that I can find happiness and peace once again. I remember, after giving birth to my son, the depression I endured. Yet, I endured it for only about seven days. Then I had my beautiful son to boost me on. A helpless life form who needed me.

Now, once again, I have my son. Yet, at 13, he is quite able to take care of himself (for the most part.) I could choose, once again, to endure the pain for him, but I think a better choice lies deep down in my spirit.

It is the choice to move on from sadness for myself.

Okay. That sounds nice. But it's not working. Not now. I need answers that not only sound good, but actually work for me. The way I'm feeling now.

So, then, I come to the final conclusion. I am going through this sadness. It may last more than seven days. It may end tomorrow. Whatever the case, I can endure it, whether for myself or for someone else.

I will not die from sadness. I'm just going to feel bad for a while.

And I know, now matter how long I endure it, the sadness can't remove me from the love of God, my husband, my family, my friends. It can't steal anything from me that's of any worth.

It may take a miracle, but this, too, shall pass.

The Green-Eyed Cat Brings Wisdom

I ask for wisdom. I receive wisdom.

I found today two sites exploring alternative treatments for Multiple Myeloma. The first is worth visiting:

http://www.margaret.healthblogs.org

In Margaret's blog, she presents well-documented ideas about curcumin, a substance known to help MM survivors stay in remission. Curcumin, in case you didn't know, can be found in curries, especially tumeric. It can also be taken as a supplement, called Longevinex, which seems to be the best. But there is also something called Tumeric Force that may work, also. I know, for a fact, that MD Anderson was conducting a trial of Curcumin as a treatment for MM just last year, since my MM doctor there mentioned it. But the trial had closed already.

Margaret also discusses ginger as a method of reducing and preventing bone lesions. Of course, I love ginger. I drink it as a tea I make by shaving ginger root into a pot of hot water. It's spicy and helps reduce nausea (a problem these days.) Ginger always helps nausea. I wish I'd remembered to make my special ginger tea when I was throwing up my guts after the high-dose chemo. I did drink Ginger Ale, but it's just not the same as the tea. Maybe too much sugar?

I've also signed on to a list serve at:

http://beating-myeloma.org/

Besides providing a forum, it is also a great place to read about treatments both alternative and conventional or both for MM.

From reading these I re-discovered the power of the sauna in the treatment of MM, so I'm reinstating my membership (which I'd frozen) at Cooper Aerobics. It's expensive, but has a clean well-run facility with a dry and steam sauna.

Stress management is also important, as I know. I remembered a wellness class at Collin College (where I'll be teaching in the Fall) that offers yoga for free, so I'll start that tomorrow, if I can.

There is also a level 1 yoga class at Cooper Aerobics tomorrow, so I may just go there.

I feel better just making plans to get back to these alternative therapies. I say "get back" because I did all of them extensively before the transplant and with excellent results. My mProtein dropped like a stone in response to all the treatments both conventional and alternative that I did.

For, in addition to the Velcade (chemotherapy) and steroids (dexamethazone,) I did the following daily:

Ate food spiced with tumerick and curry
Drank ginger tea
Visited the sauna
Did spiritual work, usually through writing, breathing exercises, meditation and guided imagery
Walked two miles outside
Took a detox bath with Epsom or other salts
Exfoliated
Drank tart cherry juice (known to bring down mProtien)

I had good results from this combination of therapies. I won't need the chemo or the steroids, but the other stuff I'll gladly return to.

Have You Been Through An Allogeneic Transplant?

In James 1:5 there's a verse, I find comforting. It says--

"If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him."

I've been quiet about it, but I am part of a trial. It involves what is called tandem transplant protocol in which I first take on an autologous transplant (just completed,) then, withing 120 days take on another transplant. In my case, for the second transplant, I can choose between an auto (again) or an allogeneic transplant. I can choose what is called an allo-transplant (hence the term allo-geneic) because my only sister is a match for my bone marrow.

But I lack wisdom about transplants. Especially allo-transplants. Not because I haven't read everything I can about the allo, but because the complications for the allo are vast and I do not know what doing the allo will bring. For one, I could die. About 10% do. For another, I could get a terrible case of graft vs. host disease, which can be as mild as a rash that eventually goes away or as severe as disfigurement or worse, loss of mobility. What's more--the allo-transplant will take four months.

I need wisdom, though I feel that, my request to God concerning the allo-transplant, has been answered. As God answered when I asked about the auto-transplant. For I was eventually at peace about the auto. Concerning the allo, I have no such peace.

But I continue to ask God for wisdom because, as the verse says, God gives generously to ALL. Even better, God doesn't hold it against me for continuing to ask. There is no fault in asking God over and over again. So I do. And I know I will receive wisdom from God concerning whether I should go through the second transplant. That's because God's been good to give me the same wisdom about the auto.

I am asking that if you lack wisdom, you would pray with me--ask God to continue giving me wisdom, in one way or another, for or against the allo. And, if you have wisdom concerning the allo-transplant, I ask that you share it with me. This is especially for those who have actually gone through an allo-transplant. Or, if you've gone through just an auto-transplant...please share your story.

I'm also going to (finally) attend the Myeloma group at Gilda's Place to see what others, who have gone through this, might suggest.

Thank you for your help.

Home

Arrived last night at 10:30.

Peace reigns, though I'm battling a headache.

I feel free, nonetheless, from the gravitational pull of MD Anderson.

God and life are good.

Way To Go!

Today is my laaaaaAAAAAaaaast appointment (concerning the transplant.)

I'm going hOoOoOoOoOome!!!!!!!!!!

All RIGHTy now.

Gloomy Ocean, Green-Eyed Cat

While Kirk retrieved our dog and cat from his sister's house in Corpus Christi, I found myself sequestered once again. This time at a quaint bungalow on Fulton Beach near Rockport.

Waiting for Kirk, I read The Secret. A book of wisdom on creating what you want, instead of what you don't want, in life. I had come to Rockport hoping to feel the sun on my face, the ocean on my feet. Instead, I felt the cold and watched the rain.

But I grasped what the book was telling me. That in order to create what you want in life, you've got to stop focusing on what you don't want.

Twice a cat with green eyes visited me. The first time I had come to a point in The Secret where I was asked to verbalize the good I wanted. I started this. Then the howls of the green-eyed cat drew me to the back door. I opened it. He came in. This bungalow was clearly his bungalow. He skipped immediately to the bathroom and jumped up into the sink. He made me laugh. Eventually, I put him back out.

The second visit came at another pivotal moment. An exercise I was doing from the book inspired me to focus on something that would lift my spirits. So I closed my eyes and imagined the future. I have long hair flowing behind me as I ride with my arms wrapped around Kirk's middle on his motorcycle. We are riding through the hill country along the Devil's Backbone near Austin. Our land we've just purchased is near. Our pop-up camper sits on it. We are just beginning to build a home we've dreamed of building.

Then: a jump and scratch like a large dog comes from the back door. I go there thinking I'll see a Great Dane looking up at me. But it is, once again, the green-eyed cat. This time I decide not to let him in. Still, he goes to every window and howls to me, his green eyes staring me down. He makes me laugh once again.

I am here in Houston now. But did not remember, until I saw the gloomy photo I had taken of the ocean, the visits from the green-eyed cat who punctuated with laughter the exercises from The Secret that gave me joy.

Maybe there's something to this thing The Secret describes.

T.V. and the Steroid-Induced Delusion

I don't like daytime television, but I watch a lot of it. And it's not as if it has anything to do with the cancer I had because I watched lots of television both daytime and prime time that I didn't like before. What I watch has changed, however, since I no longer crave the gruesome forensic drama or the embattled courtroom display. I now watch, most of the time, HG TV, though I still don't like it all that much. HG TV, of course, means Home and Garden Television. For daytime, I'm most interested in houses and other house-like presentations, like self-constructed rv's, the history of old homes and designers competing over room decorating.

As for prime time television, I have one guilty pleasure: American Idol. But I'm too embarrassed to talk about watching that today.

Daytime television, I must admit, is embarrassing, too. But for different reasons that have everything to do with the essence of a statement Lance Armstrong made in a reflection about cancer recently published in Newsweek. He said:

“It’s clear that the way we battle cancer is deeply at odds with our values as a country, and with our common sense. There is a serious gap between what we know and what we do; what we deserve and what we get; what should be and what is” (37).

Armstrong elaborates, stating that our country is about freedom, choice and rights. But cancer isn't, mainly because there are things Americans could do to help the cancer situation that they don't. For Armstrong, he's mostly referring to lack of legislation for health care and cancer research. But he is also speaking of how Americans abuse their health more than any other country in the world.

Which brings me back to December of last year. I was coming off of two rounds of steroids and chemotherapy. By this time, my face had that characteristic moon shape. I had gained around 15 pounds. I looked forward to stopping the steroids because I knew it would deflate my body, but I had no idea that withdrawal would be so psychotic an experience.

As I lost weight and my face slimmed down, I also felt as if I was stoned for a total of five days on some very bad drug. I was extremely paranoid. For a few days, I'll never forget, while in this state of psychosis, everything I saw on television was blasphemy. I believed that American had somehow come under the dominion of an angry and controlling God. This God watched American television and saw it as a reflection of our core values as a society. And, for these abominations, He was planning to annihilate us.

His outrage: the myriad of ads and programming focused on the outer self. "Slim and lift," your stomach, eyes, butt and thighs with low calorie diets, pills, nylon smoothers and impossible work outs. And the worship of models and actors who had achieved this bodily perfection was achingly clear when we salivate at the chance to see "tears and top model mayhem" on America's next top model. Or when we drooled over perfectly dressed people exclaiming, "That suit is horrible on her" on What Not To Wear. And on.

His anger: the consequence of internalization, the obsessive focus on appearance. So for those who diet, exercise and criticize their bodies so much it makes them sick, there's the pharmaceutical ads proclaiming that "side effects are generally mild and vary by age." These drugs can "prevent depression from returning," make girls "one less" cancer statistic or gift men's and women's organs with the ability to love "like there's no tomorrow."

For three days, I believed that God was angry with America because of what our televisions, really our oracle, said about our society. The oracle spoke of debauchery and decadence that, under this God's judgment, would send us all to hell in hand basket.

For a few days, I stopped watching television. The display of judgment inducing behavior was too garish for me.

Today, I'm back to watching the old oracle of daytime debauchery. But I no longer believe God is going to kill us all. I just believe that so much of what I see on television supports a striving way of life that cancer thrives on. That if something doesn't change, not just on television, but in our society generally, cancers of all kinds will become an epidemic. Some cancers already have, according to those in the know. Whether this is true or not for society is not something I can say without becoming as judgmental as that angry God I imagined. But I know it was true of myself. Before cancer, I was one stressed out woman. My regular pattern of breathing was actually panting. And I fed my striving habit by every means possible. It was my energy and sustenance.

I'm wanting now to have mercy on myself. Let go and let God. You know, all that babble we've heard for years, but ignored. I have even started meditating just a little each day. Praying. Writing more and more. I'm still something of a stress addict, but I think I'm relaxing more. Even if I still haven't stopped watching televsion.

Maybe I'm doing research.

Cancer Sidelines

Last night I read the cover story of this week’s Newsweek. Though organized in a way that is shamelessly supportive of Democrat presidential hopeful, John Edwards (whose wife’s reoccurring cancer demonstrates a textbook case of the private becoming political,) the article written by Jonathan Alter and entitled “How I Live With Cancer” was mainly a well-written, if not newsy account of Alter’s struggle with mantle cell non-Hodgkins lymphoma.

Despite the politics, Alter’s story of survival resonated often with my fight against Multiple Myeloma (another blood cancer,) except that when Alter discovered his cancer it was already at a deadly stage. As for me, I am only in danger of dying much later in life than sooner; that is, though I do not accept it, my life may be shortened by Multiple Myeloma. For this reason, my prognosis is deemed very good.

My protocol for survival, though not a cure, is clear: three rounds of chemotherapy and steroids, then a transplant or two. After weathering with few side effects the chemo and steroids, it took six weeks in Houston’s MD Anderson to complete the first transplant. I have just completed it, and I’m going home to Frisco the day after Easter. The only reason to return to Houston again: check-ups and, perhaps, an allogeneic transplant.

Alter’s protocol was similar to mine. He, too, went through some rounds of chemotherapy, though at a higher dose. And he, too, went through an autologous transplant with the same high-dose chemo I endured only weeks ago, which left me and Alter (apparently) without an immune system for a while, hairless and wobbly. He was admitted to the hospital, nonetheless, whereas my transplant was done on an outpatient basis. I still must avoid crowds whose minor diseases and infections could sicken or even kill me.

Despite the similarities between Alter’s story and mine, it’s true that his story, as he writes, “…isn’t typical, because none is. Every patient reacts differently, both biologically and psychologically. The only constant in cancer is inconstancy” (32).

For its preponderance of true, I recommend the story. The link for the story will work all this week; it is http://www.msnbc.msn.com/id/17888476/site/newsweek/. I love Alter’s daily recovery plan he calls Herman. It is the same as mine.

H stands for humor.

E stands for exercise.

R stands for religion.

M stands for meditation.

A stands for attitude. (He has a lot to say about this one.)

N stands for niceness to his family (not as easy as it sounds.)

Alter also writes about his decision to be candid about his cancer. “I decided early not to keep my cancer a secret. I felt enough stress already without trying to figure out who knew and who didn’t,” Alter writes (33). I agree that telling others reduces stress, but not for the same reasons Alter states. For me, telling others was a choice inspired by the idea that things brought into the light have less power over me and can, therefore, be defeated. In spite of this openness, Atler decided to keep “the prognosis under wraps for fear that people would pity [him] or write [him] off.” Then he writes of a phenomenon I’ve experienced quite a few times already and even very recently. “…I knew,” writes Alter, “that for all the new openness about cancer, sick people still get sidelined” (33).

“Sidelined” is an excellent word for it. While I know that I am loved by family and friends more than I ever really allowed myself to know before, I have also been sidelined by family and friends. The phenomenon reveals the unpretty, narcissistic and even instinctual underside of human nature that inspires some (and I include my own past behavior) to ignore, marginalize or flee those with cancer or sickness. For, I have been both preyed on and ignored in waiting rooms, classrooms and hallways. And I’ve been told to stay away because my presence, it was reasoned, may bring the spectacle of “crisis”. I am avoided, walked around and seen as symbol of death—even a representative of others who (sadly) died of cancer.

Imbedded in Alter’s article is a reflection by the patron saint of cancer survival, Lance Armstrong. Here, he makes many statements I can agree with, some that I cannot. One I agreed with in particular says something that’s haunted me since I had a steroid-induced experience back in December:

“It’s clear that the way we battle cancer is deeply at odds with our values as a country, and with our common sense. There is a serious gap between what we know and what we do; what we deserve and what we get; what should be and what is” (37).

But that is a topic for another blog. Meanwhile, bless you Jonathan Alter for making me feel less alone. The article helped me to remember my struggle against this thing is not solitary. There are others, and I can gain strength from them just as others have gained strength (I hope) from me.

Comfort

"In a hole in the ground there lived a hobbit. Not a nasty, dirty, wet hole filled with the ends of worms and an oozy smell, nor yet a dry, bare, sandy hole with nothing in it to sit down on or to eat: it was a hobbit-hole and that means comfort."
--The Hobbit by J.R.R. Tolkien

When I was a kid, I found out about something called Southern Comfort. Though it was in a sparkling—princess pretty—decanter, I knew it was only for adults by the smell. Most adults, I noticed, ignored the smell and drank it as if it really was able to bring them something they may or may not have known they needed: Southern Comfort.

I remember imagining what Southern Comfort felt like in comparison with comforts from other places. Clearly, Southern Comfort was the most desirable kind of comfort. And that is because it comes from the South. Not a cold and snowy comfort like from the North; nor a glitzy and suntanned comfort like from the West. But a warm and tropical comfort like the humid salty air near the Galveston Bay where I was raised.

Finding and keeping the right kind of comfort has become important to me since I was diagnosed with cancer in October. Though the Principal of an elementary I once taught at said I was a risk-taker in the best way, I find myself in this season shunning too much excitement and seeking comfort instead. And not really just physical comfort, but emotional comfort.

A good friend and mentor of mine spent years finding comfort for the unexpected death of his son. I don’t even think my friend realized he was doing it. He was just searching for something that would resolve things somehow. I remember sitting in his office only two weeks after my diagnosis and a few years after his son’s death, listening to him tell me of his visits to the places his son had loved and how going there now made him feel close to his son. I was amazed that my friend had found something that could work to ease his pain, then I said, “Now, I’ve got to find comfort and I don’t even know where to start.”

Comfort just isn’t easy to find when you’re suffering. It’s as if everything that worked for you before doesn’t work any more. You try the old ways and nothing sticks. The pain continues. You have to move on and try things that you’ve never thought of or that you rejected long ago as ineffective. It can be a long process, but I found comfort in simple things.

That first night after high dose chemo, when I was throwing up the lining of my stomach (literally) and in terrible pain, Kirk was my main comfort. All night he did whatever he could to ease my physical pain. But he was there for the emotional pain as well. “This is the worst of it,” he said. “You’ll get through and tomorrow will be less hard.” He reminded me that I would live, no matter how much it hurt right then.

I pray everyone going through a night such as I experienced has a Kirk to give them comfort.

But here is my list of comforts that really work for me. Unlike Southern Comfort, they are non-alcoholic; and, though many of them require a “Kirk” or caregiver to work, many of them do not:

--Talking to God alone.

--Praying with Kirk.

--Breathing, meditating, guided imagery.

--Reading Psalm 23.

--Being close to my mother, my father and my sister.

--Feeling the love of friends.

--Writing.

--Hugging my son.

--Getting a neck rub from Kirk.

--Shooting photographs.

--Drawing with colored pencils.

--Time in the sauna or hot tub.

And if I have enough energy:

--Walking outside.

--Dancing to music.

If you are seeking comfort, I hope you find things that work for you. If you haven’t, don’t give up. Try some simple things and see if comfort comes. If not, try something else. Never give up until you find what works.

Numbers and Feelings All in a Pile

In just ten days, my white blood cell count went from .4 to 2.7; hemoglobin 10.0 to 12.3; platelets 89 to 187. The most dramatic is the platelets, since 187 means I'm in the normal range.

The excellence of my counts and other factors mean I'm able now to go home. I've lost 10 pounds since the transplant started, and I'm going to lose more. I'm easily tired as the doctor said I would be, but even that gets better every day.

I have not felt sick for two weeks. I have no hair, but I can feel it starting to grow. I've got on my head what guys call a "five o'clock shadow."

Yet, I struggle still emotionally. In the evenings, I feel angry and sad. I want out of this apartment, but I'm stuck for a few more days. My impatience makes me angry. I'm sad because I've experienced rejection in ways too deep and broad to write about. They are too much for me. My strength for it is just not there.

In the mornings and for most of the day, I feel happy. Happy for the new life I'm starting. Happy for all that I can create in the days and months to come.

I Know Nothing

I don’t know anything more than I did before I got cancer. Nothing about pain. Nothing about suffering. Nothing about forgiveness. Nothing about love.

I simply got cancer. Cancer caused me pain, brought suffering, all those things—even made me forgive and love. But it was no different than the pain, for example, I endured in giving birth to my son. No different than the suffering of abuse I endured as a kid. And as to forgiveness and love, I’ve studied both throughout my life. I did not need necessarily to learn them again in the classroom of cancer.

For cancer is not a classroom. It happens to people no matter how good or bad or rich or poor. No matter what nationality or gender. Cancer happens.

It doesn’t matter that when it happened to me I assumed I deserved it. Just as it doesn’t matter that I figured out a way to have a good attitude about it. None of these things, I see now, can change whether you will live or die after cancer.

I see now that there are no formulas, no assumptions, nothing that changes anything about cancer. Except God. God overrides all. Suffering, pain, love and forgiveness are all part of God’s universe. A universe created by God. In cancer, I can draw near to God. But that does not mean God gets any closer to me than God already was.

That’s because God is inside of me. Whatever I know about anything is because of God. Cancer happened to me, but it didn’t teach me anything God hadn’t already taught me. It simply was a part of God’s plan for me to get cancer—else it wouldn’t have happened.

If I know anything from cancer, it is that it happens, and my mind will not conceive of why it happened to me. At least not now, on earth. For now, I know nothing apart from God.

The Meaning of Life: Penny's Answer

As for the age old question, "The Meaning of Life", well, I don't believe that life needs a meaning to be well lived. I am of the opinion that ultimately, we are the captains of our own souls and we create our own meaning in our lives. Else, life's only meaning is to make more of ourselves, eat food and live long enough to insure the survival of our children. Every effort we do in life should be an expression of what we make to be our own purpose in life. To put that simply, chart your own course and don't let anyone or any thing out there stop you.

Penny is my step-sister. She recently volunteered on the Elyssa at Galveston Island.

Trip to the Hill Country

(These pictures were originally placed on a photo site. Unfortunately, the link was working only about half the time. So I decided to put my favorites here.)

Jacob and Carolyn yucking it up on her recliners.










Jacob luxuriating in wedding clothes on Chuck and Judy's couch.










Chuck in wedding clothes telling a story (no shoes or socks.)