God's Sense of Humor

My radiation treatments are going well and I think my hip is already getting stronger. I couldn't start my Xeloda chemo pills this morning as planned because you have to take them on a full stomach, and I haven't been able to eat in two days. I wasn't even able to look at my protein smoothie this morning. Then there was "miscommunication" between one of the clinics here at the CTCA and the one in LA. Then I started feeling sorry for myself because I am here all alone (by my choice). By the time my radiation treatment was over I had worked myself up into such a state that I just wanted to go to the chapel and be by myself to have a good cry.

When I got to the chapel, another lady and the chaplain were already there having a discussion and asked me to join them. The topic they were discussing was trusting in God. The Lord has such a great sense of humor. He had just been waiting for me to show up for this discussion. He wanted to make sure that I realized that He knew how my day was going and He was there with me to help me through. I am so in awe of His timing.

I still cried when I was alone in the chapel, but for a different reason. I cried for my lack of faith.

Of course I would love everything to go back to normal. I would love to be able to wear my flip flops without tripping. I would love to be able to do step box arobics again. I would love to experience spontaneous remission. I would love to throw away all my pills. But more importantly I would love to have the faith of Abraham that would unquestionly accept whatever the day brings because I know that God loves me. I am not there yet, but at least I know what the goal is. I know that there will be days, like today, when I will miss the mark.

But those who wait for the Lord [who expect, look for, and hope in Him] shall change and renew their strength and power; they shall lift their wings and mount up [close to God] as eagles [mount up to the sun]; they shall run and not be weary, they shall walk and not faint or become tired. (Hebrews 40:31)

Traveling Alone

Since last November most of the things I have done outside of my house have been with a caregiver. But this time when I returned to Tulsa, I decided that I wanted to make the trip back alone. I know that this doesn't seem like a huge deal if you have never have two good feet, but for me it was a major accomplishment to make the 1200 mile trip by myself.

Let me put the situation into perspective. Last year I was able to walk a mile in about 15 minutes; now it takes me about 45 minutes. So I was a little nervous about sprinting through the airport trying to make it to another terminal.

The American Airline staff was excellent. Because I was in a wheelchair, I was allowed to go to the front of the security line. The guy wheeling me around LAX was running people over right and left, and I was holding on tight. (Can you imagine this picture?) I also got to board first with the "children flying alone" which is a another perk. You have to look for the silver linings.

The Dallas/Ft. Worth airport is great for people with mobility problems. They have electric trams going up and down the different terminals, so it's easy to catch a ride. Unfortunately, I missed my connecting flight, and by the time I arrived in Dallas the trams had shut down for the night. The poor attendent had to push me in a wheel chair for what seemed liked ten miles. He wasn't in the best of shape, and I was more worried for him than I was about my getting to the departure gate.

I have to say that I was kind of proud of myself for getting to Tulsa without any major problems. My sister will be here next week, and I am looking forward to her company. I am also looking forward to her helping me through the cafeteria line. It's really tricky trying to balance a full tray and manage a cane at the same time.

Turning Myself In

Last Friday I finally "turned myself in" to the DMV. When people have a brain trauma, their doctor is supposed to inform the DMV who in turn suspends their driver's license. For some reason my license was never suspended, so technically it is still legal for me to drive. However, if I am involved in an accident (even if it the accident isn't my fault), my family could be sued and our insurance company wouldn't have to pay for any damages. So the only way to get the ball rolling for re-evaluation ask for my own license to be suspended.

Now within 3 to 6 weeks the DMV will notify me that they have suspended my license and send me a five page medical form that has to be completed by my neurologist. The neurologist might require that I first take an OT evaluation before he will sign the form. This OT evaluation costs $400 which is not covered by insurance.

Once I take the OT evaluation and have the signed medical form, I can have a hearing with a judge. The judge will then decide if I can be reevaluated by the DMV. If the judge says "yes,"I can make an appointment with the DMV. The DMV must decide if I have to take the written and driving exam. You would be amazed at the large number of people with brain issues that never bother to go through this procedure are still driving- isn't that a comforting thought?

If I pass the driver's test, I'm back behind the wheel.

The Blessing of the Hands

The day before we left CTCA, I went into the chapel to pray for wisdom about staying in Tulsa for treatment or going home. I just "happened" to come into the chapel during the Blessing of the Hands ceremony. Once a year on May 12, Florence Nightingale's birthday, members of the CTCA medical community have the opportunity to have their hands anointed with oil and prayed over in recognition of their ministry of healing.

During this ceremony, the chaplain prays that the hands of the doctor, nurse, technician, or volunteer will be led by the power of the Holy Spirit to bring comfort, kindness, and medical skill to their patients. Who wouldn't want to be in a cancer center where the people treating you actually want to be led by God while they are treating you?

After observing this Blessing of the Hands ceremony, I felt an absolute peace in my spirit. I knew I had come to the right place for treatment.

Caregivers

I have always been very independent, and it is much easier for me to give help to other people than to accept help for myself. The past six months have taught me than this attitude has really been a pride issue, and I am now getting a crash course in humility. Humility is not something I am acquiring overnight, and I still struggle everyday.

Since I was diagnosed with the brain tumor my life has been turned upside down. I can't drive anymore. I am not working at my job. I can't work in my garden. I can't do my own housework. I have to stop worrying about the dirty windows. Some days I can do the laundry; other days I can't. I can't carry things upstairs. I can't walk 10,000 steps a day. Many people don't treat me like an adult anymore. These are huge changes to process in such a short amount of time.

I have had to concede that I need caregivers to help me get through this time in my life. In some ways I think it is harder for my caregivers to cope with the cancer than it is for me. The caregivers have to cope with feeling guilty about doing what they have to do to maintain their normal lives and meet other necessary obligations and still have time to worry about me.

For example, my husband still has to keep his job while at the same time has taken on a lot of the household duties and drives me to the endless doctors' appointments I have each week. He is often late for work. He took a week off to go to Tulsa with me when he had a ton of work to finish. I know he worries about meeting deadlines for his job, but doesn't want me to know he is worried. I pray for him daily that he doesn't crack up (or run away from me when he has to put up with my mood swings). He is so strong and makes me feel safe no matter what happens.

My daughter Becca doesn't treat me with kid gloves - and this is important in a caregiver too.

My sister Judith gave up her spring break to hang out with me, and I ended up yelling at her because I still had to prove to her how capable I was of taking care of myself. Luckily, she forgave me and is coming from Florida to stay with me in Tulsa while I have radiation treatments.

My brother David gave me the push I needed to get a second opinion from Cancer Treatment Center of America.

My niece Jordan and nephew Adam came from Florida and helped me through my wheelchair days in the hospital. Their professional expertise, youthful humor, and honesty were exactly what I needed.

My brother-in-law Ian can relate to my disabilities and distrust of the medical community.

From the first minute I knew I had a brain tumor Angela and Velma have been more like daughters to me than friends. At Christmas they came and decorated my hospital room. Their love and kindness has touched me more than they know.

Maria prays for me "without ceasing." In fact the first thing I saw when I got out of surgery was a sticky note on my pillow that said: "Maria called."

My supervisors and friends at CTEC have been fantastic. They all know me from "before," and it is essential for me to know that they still believe in me.

My friends and therapists at TRS have become a second family to me. Not only did they help me physically to get better, they helped me maintain my dignity. They were a built in support group. I miss them very much, and look forward to visiting soon.

My family and friends continue to call and e-mail me their encouragement and love- even after six months.

I found these Caregiving Tips: Advice from Patients in CURE magazine that I thought were great:

1. I will take as much attention as you'll give me. Don't always fall for it.
2. It's OK to still get mad at me for not doing the dishes or forgetting to pay the mortgage.
3. Sometimes your positive energy has to be enough for both of us.
4. Respect my self-esteem. It's hard to accept the fact that I need to be cared for.
5. I don't want to feel fragile and helpless, so respect my need for independence. Let me do as much for myself as possible.
6. Touch me. Cancer isn't contagious.
7. If you think I am overexerting myself, check with my doctor before trying to keep me from living as normally as possible.
8. Forgive me if, in my fear of the unknown, I am difficult or unkind.
9. Remember to laugh and cry with me.
10. Be honest with me.

I came to the end of what I can do in my own strength a long time ago. God's grace is the only thing that keeps me from bitterness and despair. Knowing that God has a plan for my life is what gives me continued hope. I have to stop thinking about "what if..." and trust in God's love and protection. I am so blessed that the Lord has put my family and so many good friends in my life to help me through the cancer.

Two are better than one, because they have a good return for their work: If one falls down, his friend can help him up.
But pity the man who falls and has no one to help him up!
Also, if two lie down together, they will keep warm. But how can one keep warm alone?
Though one may be overpowered, two can defend themselves.
A cord of three strands is not quickly broken. (Ecclesiastes 9-12)

The Treatment Plan

Carroll and I returned to Long Beach Friday afternoon. I will begin taking my chemo pills on Monday - 5 of Tykerb and 6 of Xeloda each day. The Tykerb is a 30-day course of treatment and Xeloda goes for two weeks at a time. I won't know how many courses of treatment I will need until we see how the cancer is responding.

I saw the naturopathic doctor again and he gave me a ton of natural supplements to help me build my bones back up, work with the traditional cancer treatments, and lessen the side effects of the chemo (and I preparing an Excel spreadsheet to help me manage all of these meds and supplements.):

• whey protein powder to put in my smoothies


• Vitamin D3 (2000 units) - anti-cancer effect and strengthens bones


• Vitamin B6 - to reduce neuropathy and protect the nerves


• Similase - to enhance digestion and absorption of nutrients


• Osteo Nutrients PRO - to protect and strengthen bones


• L-Glutamine Powder - to protect the GI tract, nerves, and muscles


• Melatonin - anti-cancer effect, decreases chemotherapy side effects, acts as a natural sleep aid


• EPAmax - natural anti-inflammatory, anti-cancer effect, benefits the skin, digestive tract, and cardiovascular system


• Culterelle Lacto GG - to prevent diarrhea associated with chemotherapy


• ground flax seed to increase fiber


• pomegranate juice for extra anti-oxidants

I have to admit that my biggest worry now is how I am going to react to the chemo pills. Hopefully the natural supplements will reduce the side effects. Again this situation calls for faith. Either I trust that Jesus loves me enough to get me through this, or my faith is worthless.

Mother Angelica on Stress and Tension
If your experiencing stress or tension give it to Jesus. Tell Him, "I feel like crawling the wall, but I love You and I want to give this to You." Do you think our Lord wasn't tense living with those twelve screwball apostles?

I spent an hour in patient education before I left CTCA. The nurse went over what to expect and gave me a little chemo "emergency" bag that I can carry around with me. These folks think of everything.

The pain management doctor I saw is also the chief anesthesiologist for the center. The 72 hr. patch he prescribed is fantastic. I was so afraid of being overly medicated and turning into an addict that I hadn't realized that I my body was spending so much time fighting the pain that it didn't have time to fight the cancer. This patch slowly releases the pain medication over a three-day period. I am not "doped up" or even sleepy, just free from pain. The doctor told me that this patch often enables cancer patients to go back to work.

I am feeling the best I have felt in months. I am back to doing my own laundry and getting in a lot more walking time during the day.

The doctors at CTCA told me to go back home for two weeks so I could keep my MRI followup at Hoag for the gamma knife radiation and my second zometa IV infusion which is building my bones back up.

I fly back to Tulsa June 1 and begin my three weeks of radiation treatment on my hip June 2. I will be staying on site this time which will make things easier with my mobility issues. After that we will see how I am responding to the oral chemo. If everything is OK, I will be able to go back to work soon after I return home!

Additional Amenities

I have to admit that when Carroll and I first came here we were skeptical. The claims seemed like marketing hype - just too good to be true. However, as each day passes I am becoming more and more convinced that CTCA actually lives up to the advertising. Everything here is first rate.

Even before you get to the center, they are on the job. They handled getting together all my medical records, scans, lab work, mammograms etc. going all the way back to my first diagnosis of cancer in 1998. That was a MAJOR burden that I didn't have to deal with.

The transportation is all taken care of. A driver meets you at the airport and makes sure your arrival at the Tulsa airport and your check in to the center is stress free. We are staying off-site at the Raddison, so a shuttle is provided every 30 minutes to take you to the center. If the shuttle doesn't fit into your schedule, they will send a private car. They also provide free transportation to the movie theaters, restaurants, church, and shopping (including Whole Foods). Every day they have outings scheduled to different points of interest in Tulsa. So far I have been too busy with my scheduled evaluations, but if I stay, it will be interesting to visit the museums.

CTCA believes that patient education is an important part of the treatment plan. Every day there are lectures you can attend on topics such as nutrition and the immune system, handling the stress of cancer, imagery and visualization, humor as part of cancer treatment, and naturopathic medicine. CTCA also provides support groups for patients and caregivers.

The center provides live music throughout the day to help the patients relax. There is a grand piano in the main hall, and other pianos are located throughout the building. The patients are invited to use the pianos as part of their therapy.

But the greatest thing is that the only thing CTCA does is treat cancer patients. I feel like I have a built-in support group. It is fantastic to be around folks who are going through the same experience as I am. And if people are willing to travel away from home for treatment, they are hopeful, not just coming here to die. It is a very upbeat group.

Being here is like being at a cancer spa - and the cost is no more than conventional treatment in your hometown. Instead of focusing just on radiation or chemo, their goal is to treat the entire patient.