Ch 11 – The Big Decision

Original post 5/12/08

December 26th we dropped off the pile of paperwork I filled out for Dr. Powers, at his office.

As we headed for my appointment with Dr. Patel December 28th, we didn’t know we had a BIG DECISION to make.

Dave & Lisa are going with us to meet with Dr. Patel. The 4 of us are praying that God will give Dr. Patel the wisdom to choose the form of treatment that is right for me. We are prepared for the appointment, with a list of questions.

I introduce Dr. Patel to Dave & Lisa. Then I ask if Dr. Khalil called; he had. We are very anxious to hear about their conversation. Dr. Patel tells us that at the beginning of the conversation Dr. Khalil explained his recommendation of hormonal therapy & his reason for making it was his concern over my compromised immune system, which he did not think would handle chemotherapy, due to my ulcerative colitis. From his description, I would say, Dr. Patel listened respectfully before he responded. He can see his point; however, he explains his reason for advising me to go the route of chemotherapy is based upon the metastases to a vital organ – the lungs. Dr. Patel says they spoke at some length, & by the end of the conversation, they switched positions so that each was arguing for the position opposite of the one he held at the beginning of the call. This makes us think back to what Dr. Khalil told us Monday. Dr. Patel repeats the same statement. “There is no standard of care for stage III or stage IV cancer.”

Dr. Khalil also told us there is not a right or wrong approach, just different approaches to treatment. We are glad we prayed for God to give Dr. Patel wisdom to choose the right treatment. He then tells us the pros & cons of the 2 options, which I will try to summarize.

Chemotherapy of 8 cycles, with a PET scan every 6 weeks, to monitor the progress of the chemotherapy. This means 6 months of chemotherapy. If we go with chemotherapy, it can make a big difference, very quickly, in terms of killing the cancer, but it also has many nasty side effects. I lose my hair, which is usually most traumatic for females. I get sick with each treatment, but there are drugs to control the illness. Blood cell counts are checked prior to administering each chemotherapy treatment. If my white blood cell count drops too low, treatment is delayed, this extends the total treatment time. In addition, there is a lifetime limit of both chemotherapy drugs & radiation treatments that can be administered. When I reach my limits, no more can be given.

I tell Dr. Patel I am not worried about losing my hair. I’ve already talked with my stylist about shaving my hair off when it starts to fall out & getting a good quality wig, while I can match it to my hair. I already voluntarily had my hair shaved off, after my auto accident, in 1999. Due to lacerations to my head that required stitches & surgery to reconstruct the bones in my face, which required an incision that was within an inch of ear to ear, across the top of my head, the doctors had chopped off so many chunks of hair that it was better to have the stylist shave it all off than to have her shave off the front half & live with a mullet for the next year & a half. My major concern is how sick I may get from the chemotherapy. I am so concerned; I wonder if it can nearly take my life. Dr. Khalil’s concern reinforced my anxiety. Dr. Patel tells us that he has had chemotherapy patients who have ulcerative colitis, but he cannot tell us the severity of the disease, in any of these cases.

Hormone, or endocrine therapy, as it is also known, requires that I take a pill every day. A PET scan will be done in 6 weeks as a baseline scan & every 3 months afterward, to monitor progress. The baseline scan is not expected to show any improvement over the PET scan completed in early December. In fact, it may be the same or even a little worse. If we use a hormone blocker or an AI (aromatase inhibitor), it will take longer to see results, but it won’t have the side effects of chemotherapy. Dr. Patel warns us that it takes 1 month for the AI to be effective, then it usually takes at least 3 months to see any improvement on the PET scan. He informs us that the side effects are the same as menopause – hot flashes, joint pain, possible personality changes, possibly depression, 10% weight gain, & osteoporosis. Dr. Patel clarifies for us that personality changes will not be major changes. (That’s a relief! I put Ed through enough to adjust to my personality changes resulting from the brain injury sustained in the auto accident, in 1999; I couldn’t bear the thought of putting him through that again. I just praise God for a wonderful husband who loves me despite the fact that I am not exactly the same woman he married.) Dr. Patel indicates that, with this option, we will still have our “ace in the hole” (chemotherapy) or the “big guns” (chemotherapy & radiation), if we need them, in the future. He uses both terms, in the course of our conversation.

As Dr. Patel is talking I am thinking. We had our hearts set on getting results quickly, but the side effects of the hormone therapy cause me less concern than those associated with chemotherapy. I am already dealing with hot flashes, due to stopping the HRT; however, Dr. Patel says they will get worse. I am already at least 10 pounds overweight, & I don’t look forward to further weight gain. Dr. Patel tells me that I am not to go on a diet to lose weight; it is too important that I eat a well-balanced diet to keep my immune system as healthy as possible. If this is the route he recommends, it will take some time for me to mentally adjust to the idea of accepting myself weighing 10% more. God knows how my brain is wired. He will have to help me with this one. Perhaps there is a solution. I’m not prone to depression; I can trust God to help me with this, if it should happen. I take a good quality multivitamin & calcium supplement that I trust will help to protect my bones against osteoporosis.

Ed, Lisa & I ask our questions, during Dr. Patel’s descriptions of the 2 options, to get additional information, as needed. Dr. Patel is very thorough when he describes complicated processes; we are amazed at how easy he makes it to understand them. He explains that the hormone therapy he is referring to is called an AI (aromatase inhibitor). It inhibits my body’s ability to produce estrogen.

At one point, I brought up the fact that my mastectomy surgery was canceled & wonder if it will be rescheduled for a later date, after some treatment has taken place.

He states that I can only have surgery if it is possible to remove all of the cancer. My cancer is too advanced for that to be possible. Having any major surgery would be, to any cancer cells not removed, like pouring gasoline on a fire; it would cause those cancer cells to multiply & spread much more quickly! I was wrong about why surgery causes cancer to rapidly multiply & spread. Dr. Patel addresses this by telling us that most people think the exposure of the cancer cells to oxygen causes this rapid growth. Actually, when the body recovers from surgery it produces chemicals that stimulate the natural healing process, but these same chemicals stimulate the rate of growth of cancer cells.

After telling us about his conversation with Dr, Khalil, the details of both forms of treatment & answering our questions, Dr. Patel explains that my opinion of & attitude toward the form of treatment chosen is crucial to its success. He says if I don’t think chemotherapy or hormone therapy will work, it won’t work. Then he turns to me & asks me which one is my choice. It is really scary to unexpectedly have that much responsibility dropped in my lap! I quickly look at Ed & Lisa & then back at Dr. Patel; I see the same look on their faces as I think is on mine – a big fat question mark. I tell Dr. Patel that we prayed for God to give him the wisdom to choose the treatment that is right for me. Ed & Lisa agree. I did tell him that it is especially hard for me, due to the brain injury, to be put on the spot to answer such a question. I need more time to process what I just heard before I could react with a decision.
Ed asks Dr. Patel what he thinks we should do. He is very evasive.
Dr. Patel explains that he knows we take an active role in educating ourselves about the various aspects of what I am facing; so, he knows we are capable of making the decision. He points out that he is impressed by our supportive family, which he often does not see. Every appointment I bring at least one family member with me, & I always bring a list of questions.

At some point, Lisa asks him what my chances are. He is hesitant to answer but does respond with, “Your mom has a very good chance of living more than 5 years.” He has known me longer & knows me a little better than Dr. Khalil, but I think his positive response is interesting. Dr. Patel has a positive outlook, & I believe he will do everything he knows to do to help me live as long as possible. However, I don’t think he is the kind of person to give false hope either. He is aware of my faith & has heard me state that God told me that this is not a death sentence. Perhaps this is also confirmation that he believes what I have said is true.

Ed finally asks Dr. Patel what he would do if it were his wife or mother, to try to pin him down for a recommendation. After he & Ed go back & forth for some time, Dr. Patel finally says he would choose the hormone therapy.

As I sit there listening, it gives me time to process everything & to pray, so I can feel comfortable making a decision. I realize that Dr. Patel told us his decision when he told us about his phone call with Dr. Khalil. He is now confirming it.

Dr. Patel asks me again if I am able to make a decision or if I want to go home & let him know later what I want to do. I tell him, “I want to go with the hormone therapy.” I look at Ed, & he nods in agreement. I look at Lisa, & she nods in agreement. Dr. Patel asks if we are sure. We look at each other again, & say we are sure. None of us feels any hesitation. It feels right. There is no unrest. I am not nervous. Dr. Patel seems a bit surprised by our sudden ability to be so sure about our decision. He reminds us that it will take longer to see results with hormone therapy. In fact, he reminds us that the first baseline PET scan may even be a little worse than the one in early December. It takes a full month for the AI to be effective in inhibiting the production of estrogen, & I will only be on the AI for 6 weeks when I have the PET scan in February. There usually isn’t any noticeable improvement on a PET scan until an individual is on an AI for 3 months.

We acknowledge that we are aware of these facts, but we are still comfortable with moving in this direction.

After the fact, we realize another reason why Dr. Patel asks us to make THE BIG DECISION. He knew we were in a hurry to get to treatment & to get results quickly. If he made the decision & told us he was recommending hormone therapy, which was going to take one month to begin to work & then another 3 months to show a noticeable difference, he ran the risk of upsetting us due to a further delay. By involving us in the decision-making, he gains our full support. Because we take an active role in educating ourselves, he knows we can analyze the situation. One thing Dr. Patel didn’t count on was our reliance on God’s peace to guide us, & God’s peace was unmistakably present!

Because we have such peace about this choice, we believe it is God’s choice to go with the hormone therapy. Thank you God for your peace that transcends all understanding!