This will be a very, very long post.
On June 30 of last year, I found a secret diary that my late wife Angi kept 13-1/2 years ago (2002) when she was seeking diagnosis and treatment for a difficult, painful and widespread skin condition. She feared it was cancer. Though I knew of her condition, I never knew of her fear.
The diary revealed that one doctor’s diagnosis was that the condition might be melanoma, and of a rare type that often proves fatal. Another doctor disagreed. I didn’t know this, either.
She took light treatments for many years, and the condition improved but never really resolved. We would pray about it together, but she didn’t share the contradictory diagnoses.
All this while our children were 9 and 6 years old, and her career was really taking off.
In the diary, she poured out her heart: her fears, concerns, love for friends and family.
This is what she wrote:
Today marks the fifth week of living with the possibility I may have a rare form of skin cancer — cutaneous t-cell lymphoma. On June 13 I went to my dermatologist, giving one last shot that someone could give me a cream or lotion that could rid me of the unsightly red blotches that had increasingly appeared on my legs over the past 4 years. I thought my worst problem was appearing in public in shorts or a swimsuit. I came away wondering if I will live to raise my children, Matthew, 9, and Laura, 6.
My doctor and I decided that we would wait for the biopsies until I returned from the vacation that started three days after my appointment. He told me not to alarm myself by reading all the stuff on the internet. It’s sobering when you consider yourself a youngish healthy 49-year old to have a disease with a limited life expectancy. If they catch it early, the prognosis is good — 32 years. But stage 2 drops to 12 years — barely enough to see Laura through high school. And if you’re at stage 3 or 4 the numbers drop to 2 or 3 years — scary stuff. It’s amazing how the new knowledge plays with your mind. Only yesterday I felt young and invincible. Now with this new knowledge, I touch a lymph node in my neck. Swelling in lymph nodes is a sign of stage 2 or 3. Is it slightly enlarged? Is that recurring abdominal pain a sign of something? Are there lymph nodes in the abdomen?
Yet with all the uncertainty for five weeks now, I’m amazed how God has responded to my prayers by bringing me a tremendous peace. I don’t know what lies ahead for me, but I’m confident that God will be beside me, and that he will resolve the situation for the best. He can heal me if he chooses to, no matter what stage the disease. There may be some reason I can’t understand now — perhaps knowing they have a shorter time with me will give my children more openness to my influence, or maybe it was never God’s plan for me to take them all the way to adulthood. Maybe that is someone else’s role.
What I fear the most is not the pain of chemotherapy, radiation or bone marrow transplants — all possibilities if the condition is advanced. I fear leaving my family. I love them so much. They are the best part of my life. I fear for Laura. She’s already lost her birthmother through adoption and at some subconscious level that affects her so deeply. Can she recover if she loses another mother? Her little emotional identity is so fragile now. She follows me like my shadow. I am her security, however flawed I am at times. She’s my heart. How can I leave her?
Then there’s Matthew. I’m so proud of the person he’s growing to be. I never thought I could love anyone the way I love him — have from the first moment I saw him when he was 4 weeks old. He is everything I’ve ever wanted.
And Keith — my soul mate & love. We took too long to find one another but have had such a joyous 12 years together. Keith is so strong & so good. I know he would do better than most as a single parent. But he would feel incomplete without me as I would without him. Could he make it without my income? I’ve checked on taking out additional life insurance, but if I get a negative diagnosis it may be too late.
All these imaginations haunt me during the darker hours. Most of the time, however, I’m just leaning on God’s strong arms. He’s prepared me to trust him through so many times in my life when I was helpless — from my divorce to infertility to adoption. God has led me to the point where I know I can just put my life in his hands & lay all my burdens at the cross. After all, Jesus knew the agony of anticipation & uncertainty, praying at Gethsemane for the cup to pass, yet submitting himself to God’s will. I’m trying to do the same.
There have been so many life lessons I’ve drawn over the past weeks of waiting. One is that going in one day from feeling healthy to a painful realization that health may only be an illusion is so much the same reaction as truly confronting our own sinful nature as we stand before the cross. One day we can feel complacent as good-self-sufficient people but confronted with the image of the cross we must acknowledge the disease of our sin and our utter dependence on God.
I think I’ll fast & pray tomorrow. It’s about time to get the biopsy results back. I need the special peace & reliance on God that I feel when fasting to receive the news — whatever it turns out to be.
Funny, I’m having knee surgery day after tomorrow. I would have been dreading the pain & effort of recovery. It seems like a minor interruption now.
Well, it’s several days later and I’m still waiting. I had knee surgery Wednesday and the Lord has blessed me with a good recovery. Still no word from the biopsy. I called last Tuesday, but the advanced tests required for t-cell lymphoma just take longer. There was a time when I would have gone nuts waiting six weeks for such news. I know the peace I’ve experienced has to come from God. Only this morning when preparing to teach 1st grade class, I was led to Matt 6 and the passage on worry. It was a comforting reminder. I cannot control if I have lymphoma or what stage it may be. I can only wait, pray & trust.
I had another startling discovery this week when I found a small lump on my left shin. Could it be a tumor connected with lymphoma? There are so many questions & so few answers right now.
While I wait for the results from my biopsy my doctor has prescribed UVA light therapy. I stand in a big metal light box 3 times a week. It is a recommended treatment for an inflammatory skin condition whether I have lymphoma or not. The first few treatments burned me badly — funny how you have to get worse to get better at times. My skin looked so much worse after the first few treatments it was hard not to become discouraged. Reminds me of our spiritual walk & how we must often be forced to confront how bad our sin is before we seek the healing power of Christ’s blood.
It’s frustrating to me now that my dermatologist in Abilene recommended light treatments 3 years ago. He didn’t say anything about the potential seriousness of the condition & wanted me to come in every day. It didn’t seem as important as the work I’d have to miss. How I wish I had followed through then.
After 3 weeks, I can see the light treatments are helping. I just hope they can help enough.
There’s so much I’m unsure of now. But the important things I know. Christ has won the final battle over death & Satan. God is strong enough to give me & my family the courage to face whatever is ahead. He will never leave me. He can use this challenge for his glory. That is enough.
The results of the biopsy finally came last Thursday. I was sitting in interviews in Benton on the Saline County water study. It was Dr. B——– and the results were positive for CTCL — cutaneous t-cell lymphoma. I had wondered how I would react if the news was bad. I just felt mainly relief to finally have an answer, to finally have a some direction, something to do. I dread what lies ahead, but it feels good to be out of limbo. Dr. B——– suggested I might contact drs. in Houston at M.D. Anderson or drs. at Yale in Connecticut. This is such a rare condition that it’s hard to find drs. with expertise. We decided that I would first see the head of dermatology at UAMS, the local academic medical center & go from there. I was fortunate to get an appt. w/ Dr. T– H— on Monday. We’ll have discussions on follow-up & treatments after that.
God continues to be faithful. I feel hopeful & strong. I am so grateful that somehow I had the urge to see another dermatologist. It was also really providential that I ended up seeing the doctor I did. I was scheduled to see another dr. that specialized in skin allergies, but he wasn’t on my insurance list. I almost didn’t see Dr. B——– — more insurance issues, but he decided to make an exception for me. Going to someone who made me aware of the CTCL possibility may have saved my life.
It is a sobering time, and I know there are hard times ahead. I still feel fortunate. One young man at church is battling terminal cancer. My best friend C—- lost a baby to a chromosomal abnormality. I’m sure either would have chosen to be in my shoes instead. My friend C—- is a physician & has been so encouraging to me. Of course Keith is a rock — so loving, so dependable & so unflappable. I am blessed to have him by my side. God is good.
Yesterday I met with the head of dermatology at UAMS, the state medical school complex to get a second opinion. It was frustrating that none of my medical records or the slides of my biopsies had been sent to him. In many ways he was in the dark, yet on a brief physical exam and my account of the biopsy results, he indicates a real doubt about the diagnosis of CTCL. He is also cautiously critical of my doctor’s decision to do UVA therapy. It means that we can do no further diagnosis because my skin has been treated. He is going to get the biopsy slides, do an independent analysis & let me know what he thinks late next week. My emotions are on a roller coaster again. On one hand, it would be a great relief to learn I do not have a potentially fatal disease. On the other hand, I would be back to uncertainty about my condition. The doctor was encouraging in his assessment that if I have CTCL, it would be extremely early & no aggressive treatment would be indicated. Overall I came away impressed by the knowledge & currency of information of this doctor.
I will make a shift to using him as my dermatologist or “the quarterback directing the game plan,” as he phrased it.
I got really annoyed today reading a column in the newspaper. One of the columnists is getting married this fall & was agonizing ad nauseam because the post office had discontinued the love stamp, leaving her without an appropriate choice to send her wedding invitations. I had the strongest urge to write her & say, “I’ve been wondering for most of the summer whether I’ll live to raise my children. You need to stop wasting time & energy on things so utterly unimportant. Focus on the joy of your wedding and on building your relationship with your future husband.”
I wonder how often God wants to send the same message to me about my anxieties & how I’ve ordered my priorities. If nothing else, I hope this experience produces in me a permanent shift in valuing what matters & treasuring each moment with those I love.
I wonder about how I’ll look back at this summer. Will I be thinking, “That was the summer I thought I was dying” or will I look back at it as the turning point when my perception of myself turned from strength & invincibility to frailty?
I had a moment in Indiana this summer that was so poignant. Keith, the kids and I had gone to Nashville, IN with Keith’s sister and brother-in-law. They decided to ride a “train” that gave a brief tour of the tourist town. I opted out both because I wanted to avoid the sun & I could spend a few moments in artist shops without kids. I stood waving on the sidewalk as the train started off with Keith & the kids accompanied by Aunt Linda and Uncle Dick. A part of me wondered whether I were seeing the future — Keith alone with the kids, supported by his sweet family. It was all I could do to hold back the tears.
Maybe the book hasn’t closed yet. I’m continuing to hope & to trust God.
I stayed with Mom most of last week as she had a procedure to remove basal cell carcinoma from her nose. It was of special concern because she had the same procedure three years ago in Dallas. If this was a recurrence of her previous cancer this was very bad news. Mom told me about her diagnosis just as we were returning from vacation. At the time it felt like the straw that broke the camel’s back. I just didn’t know how much more stress & uncertainty I could stand. In a way hearing about her condition was worse than worrying about my own health. Mom is 84, and I know I won’t have her too many more years. But I love her so much & she has been such a source of strength & inspiration to me, it’s hard to think about. We’ve both really been dreading her surgery for the past month.
Again, God was so good. He gave us both the strength to get through it & the results were good. There were only a few cancer cells — in a spot different from her previous surgery. Because it was such a small spot, the plastic surgeons was able to do a skin graft rather than the more extensive reconstructive surgery we were told to expect. She came through the surgery great & has suffered little pain as she recovers.
It’s amazing how my spirit has lightened this week. I feel like I’m emerging from a long, dark tunnel. There has been so much to dread & fear. As I’m passing each marker, God has shown mercy & has provided strength & courage to meet each challenge. Each challenge has confirmed that as I trust my Father, I have nothing to fear. God will not remove all challenges, but he will give me strength sufficient for each day.
The diary ends there.
To address the obvious question: I do not know if she sought, or received, a final diagnosis on the skin condition from Anderson or Yale or anywhere else. All I know is what you’ve read. I doubt that she did; I certainly wasn’t aware of any travel.
If I were her, I’m not sure I would have asked for one. Without knowing how limited your future is, you are free to live your life as you wish. You don’t have to tell your spouse because you don’t know. You don’t have to face the temptation to lie. You don’t have to endure the looks of pity and the awkward silences from others. You can live, knowing that — just like everyone else — someday you will die, because only God can cheat death, and He only does so on the rarest of occasions. The cost of not knowing is that you live the life of Schroedinger’s cat. You’re alive but you aren’t. But at least in not knowing, you can have a kind of peace.
That’s just the way I feel. I think that’s the way she felt. And I think I know her heart.
Angi continued to take UVA light treatments for many more years. Sometimes the skin condition would flare up a little; most of the time it seemed no more than a slight discoloration.
And so she lived — really lived — for another ten years, until a few months after moving to North Carolina to serve as provost for Western Carolina University, when another kind of cancer reared up within her cells, stage IV pancreatic cancer, which usually snuffs out life using a very short fuse. I suppose it’s possible that the second cancer could have metastasized from the first, but that process usually moves faster than 10 years as I understand it. I’m no doctor.
She passed from this life on May 8, 2013 — our daughter Laura’s 17th birthday.
Today would have been Angi’s birthday. But she still had a few things to share with us and tell us, a gift left behind for us.
This brief diary is something that our children and I can cherish so that we can know how much she loved us.
It also has answered a big big question I’ve had these two-plus years since Angi passed away: How did she face the threat of stage IV pancreatic cancer with such utter calm, grace, and resolve? How did she keep working, decide on the degree of treatment aggression, manage to have so many things prepared ahead of time in case she passed away?
Because she had already faced death and decided on the terms of engagement a decade before.
She left us this final gift, discovered among the work papers and documents that I waited a couple of years longer to examine and sort: her thoughts, her feelings, her decisions about how to face the worst and be stronger in faith even when physical, intellectual and emotional strength can fail.
I am still learning so much from her.
Read Angi’sDiary in her own handwriting.