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.

The CTCA Cafeteria

One of the outstanding CTCA amenities is the organic cafeteria, and one of the most popular treats in the cafeteria is the soft serve frozen yogurt. For those of you in California who go to Golden Spoon, let me tell you that the yogurt here is just as delicious as well as being sugar and fat free (and only costs fifty cents for as much as you want).

It is often difficult for many of the patients here taking chemo and radiation treatments to eat regular food, so frozen yogurt is all they can manage. Well for some mysterious reason, over the weekend the frozen yogurt machine broke down. I thought we were going to have a riot. People were not going to tolerate missing the one thing they are able to eat. It is very interesting what becomes an issue in your life.

The smoothie/shake bar is also popular with the CTCA residents. Yesterday I had my first prescription protein smoothie. It was definitely a taste treat. One scoop of this protein powder contains 25 grams of protien which goes a long way in helping me reach my goal of 60 grams of protein a day. You can select from a base of water, organic fruit juice, or organic milk depending on whether you want a smoothie or a shake. To the base you can add an array of fresh fruit or even a scoop of ice cream (organic of course).

The salad bar is amazing. You can select from an generous list of organic vegetables, artichoke hearts, pasta salads (today we had a wonderful blend of whole grain pasta mixed with shrimp and chicken), tabouleeh, seeds, nuts, cheeses, cottage cheese - and the selections go on! The grilled sandwiches and wraps are amazing. The entrees are not only scrumptious, but they are also building up my immune system.

What puzzles me is why with my doctor's in Long Beach diet isn't really discussed. The nutritionist at St. Mary's thought a balanced diet for a cancer patient included a huge piece of chocolate cake. Isn't it strange that I had to come 1200 miles to find a treatment plan that included organic/whole food as a critical component?

Good News

Today was my second day at CTCA, and the news has been encouraging. I have had non-stop appointments with doctors from the various disciplines.

The radiologist thinks we can knock out the cancer in my hip socket in 15 days. I also met with the pain management doctor today and got started on a three-day patch. I feel better today than I have in weeks. I am walking all over the place. The naturopathic doctor was outstanding. He had so many natural alterntives for reducing the side effects of the radiation and chemo. With the team approach they practice here, every member of your team knows what the other members are doing so your care is coordinated.

Transportation Dilemma

One of the most difficult aspects of having a brain trauma is having your driver's license suspended. You can't image how hard it is to have to wait to have other people drive you everywhere you need to go. The first few weeks everyone is very sympathetic, but after five months you can hear the silent sighs of even your family members as they surreptitiously look at their watches. As my daughter put it,"Mom you are on disability, and Dad and I are going to be on unemployment if we keep taking off from work." And she is right. Life must go on for everyone; people have obligations at work they must keep. I have to find ways to solve my own transportation problems.

At first I hired a driver to take me home from rehab and to doctor's appointments. However, when my driver got her car stolen (she later recovered it), I figured it was a good time for me to come up with a cheaper solution. So I started riding the public bus, which was a strange but interesting experience. With the help of my cool "Dr. House-like" cane I walked the few blocks to the bus stop near the rehab center. Then I would walk the mile home from my bus stop.

You soon learn there is a definite pecking order in the world of disabilities on the bus. I always prayed that a wheelchair person wouldn't get on because then I had to move out of the disabled seat area and find something in the back before the bus driver pulled away and I fell over. One day I couldn't get my left leg over fast enough when I sat down, and the lady next to me started to yell at me. "What's wrong with you?' she demanded. I explained that I had a brain tumor removed and that my left side was a little slow. She decided to announce to the entire bus that I had had a brain tumor. My physical disability has admitted me into a very unique subculture that I never imagined I would be part of. You cannot image this world if you haven't been part of it.

Now that I can't walk the mile home from the bus stop, I applied for Access transportation. Access is the Americans with Disabilities Act (ADA) mandated paratransit transportation program for Los Angeles County. On the day of my evaluation, the Access van picked me up and took me to the evaluation center. The driver got a little confused and went back to my house after he picked me up to pick me up again. I found myself in this van surrounded by other people with mobility challenges. I think I have been in denial up until now and have pretended to myself that I am perfectly normal. I think sitting in the van finally made me face the fact that I am not exactly the same as I used to be.

A strange aspect of the disabled subculture is that the folks on the "other side" think that just because you can't walk you must also have mental problems. Medical and social workers often speak to me in slow, soft voices using simple vocabulary just in case I can't follow the conversation. It is kind of funny (sometimes).

Anyhow, I arrived at the evaluation center which was ten times stranger than the DMV. I sat in a huge waiting room where everyone was watching reruns of Gilligan's Island with no sound on an old television that showed the images in purple. The evaluation process itself was highly efficient, and I soon found myself telling my story to a case worker who would decide if I am eligible for disability transportation services. It is kind of weird having to share the intimate details of having breast cancer with someone so you can call a cab.

On the way home we drove all over Southern California in an Access van dropping folks off along the way. It was very surreal. One man in an electric wheelchair got dropped off at a cool chicken diner. The other people in the van were writing down the address so they could return later for a snack. Another rider had been a trial lawyer in Long Beach for 48 years. He had flunked his driver's test three times and was also trying to get approved for Access. This has got to be material for a book.

Finally at 5:30 I arrived home. Hopefully, I will get my license back by June. In the meantime, I will enjoy the folks the Lord has given me the opportunity to meet, minister to, and pray for. Without my disability I would never have know they existed.

First Day at CTCA

Friday was nonstop as Carroll and I met with my case manager, patient educator, oncologist, and nutritionist. Everyone is very friendly here and you know that you aren't just a number. The best part is I don't have to do a thing. All my appointments are coordinated, and I know that everyone on my team is getting the SAME information they need. I don't know if it's part of CTCA employee training or maybe the folks in Oklahoma are just naturally friendly - like they are in North Carolina.

The cafeteria (they call it a cafe) here is incredible. Everything is organic and designed to repair the immune system. The food is actually delicious even if it is healthy. Yesterderday for lunch I had a grilled portobello mushroom sandwich, sweet potato fries, and cream of sweet potato soup for $2.00! The green tea is free. There is one area of the cafe where you can order all types of custom protein shakes and smoothies. I got a "prescription" for my protein shake from the nutritionist yesterday. I need 60 grams of protein a day which is kind of hard to manage when I am trying to keep the calories down since it's difficult for me to exercise right now.

We still haven't made a final decision about whether I will stay here for treatment or go back to Long Beach. I have a lot of tests to take on Monday and Tuesday, and I still have to meet the homeopathic doctor. Once we get all this information, it will be clearer which way God wants me to go.

Handling Dark Days

I have to admit that I have a very low tolerance for pain. But for the two months I was in St. Mary's Hospital, I was very blessed that I miraculously experienced almost no pain. After a five and a half hour crainiotomy, I didn't even have a headache. I didn't even take aspirin after the gamma knife radiation. I thought I was going to be able to just cruise through brain cancer. I just knew God had no intention of introducing suffering into this scenario.

Then I was discharged from the hospital. Up until then I was with patients who were all in the rehab department. When I got home, and was back in the "normal" world, I had to admit that I have physical disabilities. That was really, really hard. It was a blow to my pride and independence. There are several dents in my bedroom wall that remind me of thrown pill bottles and cell phones when the reality of my life became too much to live with.

I am still struggling with the physical changes in my life - and I have good days and bad days, but never despairing days. I heard the coolest thing at church last Sunday: there is a time for remorse. People have to be allowed time to process the bad things that happen to them and feel sad. It irritates me when well-intentioned people expect that a simple Bible verse is going to make me feel better about having cancer. Of course I know that all things work together for good, but I also believe the Lord allows us time to grieve.

BUT the important thing is that I can't stay in the grief. If I stay in the sadness I become bitter and depressed. I have to keep reaching out in faith knowing that God truly loves me. The joy is getting easier to find.

Just yesterday I thanked God for all the time He has given me to pray, read, and watch EWTN. I thank Him for all the time I have to sleep. I can now thank Him (this took months) that someone else has to clean the house and do the laundry. I haven't felt this rested in decades. I am SLOWLY learning that I can ask people for help, but this is still difficult.

Now about handling the pain. Just last month I was walking home the mile from the bus stop to my house. I felt very proud that I could do this even if it took 45 minutes. Then three weeks ago I found out the breast cancer had spread to the bone. It seemed like overnight the pain in my right hip became unbearable at times. I am learning how much I can walk without putting too much stress on my hip socket, and am devouring Tylenol throughout the day. Carroll came up with the great idea of using Aspercream topically. His remedy is working well. I'll find out next week if I am going to need further radiation to the hip.

Instead of sitting in bed crying about the pain, I am now trying to offer it up as a sacrifice to the Lord. I continue to pray for a healing from the cancer, but I am beginning to see that the pain I am experiencing is not necessarily I bad thing; it has spiritual value. Below you can read some of Mother Angelica's thoughts on pain and suffering:

Wasted Pain
Suffering in itself does not make us holy. It is only when we unite it, out of love to the suffering of Christ that it has meaning. Suffering without love is wasted pain.

Prayer When in Pain
Lord, I attach my pain to all of Your pain. I do not understand the mystery of pain, nor do I grasp the power of it to change a stubborn will like mine. Though I do not understand your plan, my Lord, I accept it. I trust Your love and give You mine in the hope of being lost in Your embrace. Amen.

Eternal Words on Suffering
Think of what Christ suffered in this life; and then arm yourselves with the same resolution that He had: anyone who in this life has bodily suffering has broken with sin, because for the rest of his life on earth he is not ruled by human passions, but only by the will of God. (1 Peter 4: 1-2)

My dear people, you must not think it unaccountable that you should be tested by fire. There is nothing extraordinary in what has happened to you. If you can have some share in the sufferings of Christ, be glad, because you will enjoy much greater gladness when His glory is revealed. (1 Peter 4: 12-13)

Living in the Present Moment

By studying the writings of St. Faustina and Mother Angelica, I am learning how important it is to "live in the Present Moment." Instead of feeling sorry for myself and wishing my life could go back to before November 15 or stressing about what decisions I have to make next week to treat the breast cancer that has metastisized to my brain and bone, I am learning (after 55 years) that I can more easily handle what is happening to me moment by moment.

By nature I am not a patient person. I like to have my life planned out months in advance. I like everything to be perfect. I like to post "to-do" lists all around my house. I like to be in control of what is happening to me (and other people). It is impossible to have this philosophy and also follow God's will for my life.

I am including some of Mother Angelica's thoughts that that are helping me to more purposefully live through this adventure.

Starting Over
Very few people live in the Present Moment. It's like a new sheet of paper. Did you ever wish you could start all over again? Well, you can. That's what the Present Moment is. It's God giving you a brand-new sheet to begin again. But some people keep scribbling the same miserable thing on it.

God's Love/God's Will
Do you really believe God loves you? If you do, you know everything that happens in your life is for your good. And it isn't always a peaceful experience.

Praying in Darkness
Sometimes I am so cold and in such darkness that I merely look to Heaven and plead for light. That's a prayer of faith. A lot of people think faith is all joy. Well, I don't. Faith is sometimes scary. There are many moments in life where you are uncertain about which way to go. That kind of faith is hard. There's a type of darkness in Faith, not the darkness that comes from sin, but the darkness that necessitates trust.

The Preparation of Pain
As I look back, pain was always a preparation for me. The Lord allowed pain before accomplishing anything He asked me to do. It made me more aware of my own weaknesses, my own faults, my own incompetence, my own lack of knowledge...it made me appreciate the fact that God must do everything.

Second Opinion

I will be leaving for Tulsa, OK on Thursday to go to the Cancer Treatment Center of America (CTCA) for a second opinion. My evaluation will begin on Friday and last until the following Wednesday. I can't thank my brother David enough for making the initial contact with CTCA and encouraging my following up.

Carroll thought is was strange that I wanted to go to Oklahoma for a second opinion when we are living in Southern California. He thought I should go to UCLA or City of Hope, but to me going to these places was just more of the same traditional philosophy for treating cancer -- radiation, chemo, surgery, and toxic meds. At CTCA I will have the additional components of homeopathic and nutritional treatment combined with the traditional. CTCA also has PT and OT which I still need for my left side. That's what I call one-stop shopping. It is really difficult to try to coordinate all of these different treatment components myself.

My oncologist in Long Beach wanted me to start the first course of Tykerb chemo pills on Friday. Unfortunately, if I start the chemo treatment now, I have to wait two months to be evaluated at CTCA. I have decided to wait until I go to Tulsa to decide on a final course of treatment.

As most of you know I found out three weeks ago that the breast cancer had spread to the bone. I am trying to keep the meds to a minimum, but Tylenol isn't quite doing the trick anymore. So the oncologist asked me if I wanted morphine. I am sticking with the Tylenol as long as I can!