Thursday, June 19, 2014

New Oncologist-eventually

TDM1 is a wonderful drug in terms of side-effects. I feel great!

Monday, I sat down for infusion #20. Before any nurse approached me, I heard voices several stations away. The voices were singing in unison a song that I have heard once before while there; a song that will never be sung to me.

I find this practice of singing about someone's last day of chemo with "Don't ya come back, no more, no more, no more, no more" somehow disrespectful to the many patients like myself that will never get this fun farewell. The tradition is of course nice for the patient free now to live their life without chemo, but is it really the best idea in a room full of people where some are terminally ill? It just seems . . . thoughtless. 

In 2010, the place where I received my chemo for my stage 1 diagnosis didn't sing. I received hugs from the nurses and was on my way. The place where I received radiation therapy did end my treatment by giving me a balloon. Not so bad when radiation is something that cannot go on indefinitely no matter what your prognosis. When I arrived home, I promptly let it go gently into the blue sky above hoping that I was through with treatments forever. 

But . . .  there I was on Monday receiving an infusion. 

My nurse has let me down again -- or perhaps it was my doctor-- really it was both of them. Six weeks ago I requested to have some of my treatments in Wilmington. My nurse was supposed to contact a new doctor for me, one that we had discussed, and have my records transferred. After not hearing from her for one week, I telephoned her. She replied that she had contacted a doctor, and she was surprised to hear they had not called me. Another week passed. I decided it was time for me to contact the potential new doctor. I called and to my utter disbelief I was told that since I was established with another doctor in their practice, Dr. A., I could not change doctors. Does that not scream a lack of taking care of a patient or what! I brought this to the attention of my doctor at my appointment 3 weeks ago. She assured me that I would hear from someone from her office about a new oncologist in the next two weeks. I waited. Nothing. One morning I awoke thinking about this. I became a bit perturbed by the whole thing and decided to send my oncologist an email. She responded almost immediately, apologizing in her response. That very day, the nurse called with two doctors for me to consider outside of the practice of my former oncologist. She too apologized.  I wish she would quit apologizing and do her job. She admitted she should have followed-up. This is the same person who decided she couldn't call me about my last scan because she "chickened-out" because the news was not good.

I did not see my oncologist as I thought would happen at my appointment on Monday. One of the PA's took her place. She was warm, friendly, and absolutely seemed to care about me -- a nice change. We discussed the next steps. I am to contact one of the two doctors recommended and if it is a seemingly good fit then I can request that the new doctor have my records sent to them. From that point I can receive all my treatments there. Whenever needed, I can return to Chapel Hill. My plan is to only go to Chapel Hill if I need to make a new decision about a change in treatment. Wow, this could have been so much simpler.

Then on Tuesday I received an unexpected call from my nurse. She wanted to call the doctor I had chosen and schedule an appointment for me. Sure seems to be a lack of communication between the people involved in my care since I understood that I was to call. Nevertheless I was grateful and hopefully she will call me by this week's end with a time and date to meet my new oncologist.

I also get frustrated with my having to remind my doctor that it is time for me to have a MUGA scan or some other important test I need. I am after all paying them to manage my care. Or, maybe I am only paying doctors for sharing their knowledge instead of them trying to not harm me during treatment. At this appointment I asked about my liver function. It seems my liver function had not been checked through a blood test the last time I received treatment. When blood was taken the morning of my treatment, no liver function blood work was requested either. The PA ordered this test and commented this was a necessary test for me because the drug I am on can affect the liver. Again I ask . . . why am I making sure my treatments don't kill me? Shouldn't that be what I am paying them to do. Frustrating . . . 

Number 20 is done. Now it is time to get ready for my sister's visit from Kentucky. I have been preparing for her and her family to come for a few weeks now. A little more cleaning and some grocery shopping to complete then all my work will be done. It will then be time for some reminiscing and relaxation.

Sunday, June 15, 2014

Good Attitude, Stay Positive?

Keep a good attitude and stay positive - those words are probably heard by every cancer patient throughout this country.  I hear it. I read it on blogs and on forums. Those words are not merely words of hopefulness, though. They are words that promise a power beyond our simple thoughts. 

I am guilty of being influenced by the possibility of my mind’s power. I have chanted the mantra "kill the cancer, kill the cancer" in hopes of giving power to the drugs entering my body. My rational mind knew it really wouldn’t work, but I did it anyway. 

Perhaps the idea of the healing power of the mind began when people first believed they could communicate with their god(s) by sending their thoughts through prayer. Then somewhere along the way people bypassed the deity and went straight to using mind-over-matter thoughts sent directly to whatever the person desired to change. Sometimes it seemed to work so the possibility indeed seemed possible. To present day, this belief still persists despite any scientific evidence of proof. 

Stories of people living longer with claims their positive thoughts played a part likely lead many people to believe being positive is synonymous with living longer. But, curmudgeons with life-threatening diseases can and do live as long as positive people with the same disease. It is quite evident to me that in our think-positive-thoughts only society, no one wants to hear the stories with any type of negativity. Therefore, why wouldn't people believe that positive thoughts could actually give us the ability to produce physical changes within our body if the good-outcome tales were the only ones people heard or wanted to hear. Think thoughts of eradicating cancer, and we can heal ourselves. It gives us so much control over our individual circumstances.

Unfortunately for all of us, cancer does not have a brain. It doesn't care how strongly we desire to live. Plus, we can't command our white blood cells to attack something it can't detect. Even if we could, cancer cells are our own cells, not a foreign invader, so the immune system wouldn't know what we were telling it to attack. Instead of actually healing us, I believe the stay positive philosophy simply makes everyone involved feel better. That alone is one reason this myth continues since no one I know wants to be around someone who is sad, angry and miserable. 

I think it is a shame that our society deems it not ok to be sad. I know what it is like to see the end of my life and to face having to leave everything and everyone I love sooner than I had imagined. I have been angry, depressed and sad beyond consolation. It was necessary for me to go through all those emotions. If I had stifled them I may not have come to the happier me of today. Besides, what is wrong with some good mad as hell negativity anyway? Yeah, it makes people uncomfortable.  Cancer is uncomfortable. If more people were freer to express their emotional distress, perhaps there would be less people on anxiety medications. I did take Ativan in the beginning of my diagnosis because I was told to do so by my oncologist. I did stop crying, but it made me numb emotionally. Actually, I really didn't feel much of anything including pain when I fell in the middle of the night. Had I kept taking it, I don't believe I would have come to terms with reality.

Obviously, if our mind is able to control our insides, it can control our external circumstances as well.  Engage the mind to visualize what we desire, and we can have great wealth, a great job, and great friends. This idea is so powerful. Simply go into a bookstore and you can see how taken people are with this potential. There are numerous self-help books to guide people to tap into their minds and get what they want- all at a price of course. That $20,000 a year job could become a $100,000 a year job just by thinking it. Are you having trouble finding someone to spend your life with? - change your attitude. And, that incurable disease you have, simply visualize the cancer disappearing and it will. Or, maybe if you thought about it the right way you could win the lottery. Anything is possible with our minds. If it doesn’t work . . . well, you must not have thought the right thoughts, and you should try again.

I believe positive thinking can allow for hopeful thoughts to enter the mind, but it cannot make cancer go away nor can it change life circumstances. Action is necessary for those kinds of changes. The mind just does not have that kind of power. If it did, my life would be a lot different because I sure have wished hard enough to be free of this horrendous disease. Certainly there are millions of people like me that have wished for the same freedom for themselves and their loved ones. But, they still died sooner than they would have without the disease. 

I am not opposed to hopeful thoughts or even cheerfulness. Laughter does indeed initiate smiling causing the release of feel-good hormones that just - well . . . makes us feel good. This could be the reason why we have the saying "laughter is the best medicine". What I am opposed to is someone trying to convince another person that they can beat their cancer by having a good attitude and staying positive. Or, a person telling someone that good things don't happen to them because they didn't think the right thoughts. As long as no one can prove or disprove the mind has such an ability, this kind of thinking will continue. None of us, no matter how hard we wish it to be true, is capable of performing that kind of magic.

Tuesday, June 3, 2014

Treatment 19, #2 TDM1

Treatment May 28th-Wednesday

Changing my treatment to a facility closer to home has turned out to be more difficult than I expected. My nurse navigator claims she called to arrange my care with a new oncologist, but they never called her back. Because of her lack of urgency, I decided to call the potential oncologist's office to see if I could get things moving along.  This was not to happen as easily as one might assume. The person who took my call stated that since I had already been established with a doctor within their practice, in my case I had been seeing Dr. A. before he sent me to Chapel Hill, the patient CANNOT switch to another doctor. Have any of you ever heard of such disturbing customer service? I really did not want to go back to Dr. A., so I took this battle back to Dr. R. in Chapel Hill in hopes that somehow she could handle the situation. Well, she handed it back to my nurse navigator. It was last Wednesday that I had treatment. Today is Tuesday. I will wait patiently till the end of this week before I start making some noise. 

My treatment went well. I had a few large bubbles in the tubing carrying the fluid to my port that made me anxious. The nurse treating me was eventually able to get that under control. 

If this drug works, I will be so incredibly excited. I feel great! The chemotherapy is delivered directly to the cancer by hitching a ride on the drug Herceptin. It is supposed to be pretty powerful. I feel far better than I did a year ago. Honestly, if I wasn't suffering from acid reflux right now--possibly unrelated to treatment, still could be though--I would not know I was being treated with chemotherapy.  I do have some neuropathy in my finger tips, but I must be getting quite used to it because I wasn't thinking about it until just this moment.

My children are keeping me busy now that the three oldest are home from school.  Two of them are transferring from one college to another for the 2014-2015 school year. This takes a lot of work. One thing I have learned about colleges is don't hesitate in letting your child apply to a big university. Just because a school is cheaper in price doesn't mean your financial obligation will be less than a more expensive school. For us, the bigger schools have offered university grants that far exceed anything offered by the smaller colleges. 

My husband and I celebrated 21 years of marriage on the 28th. And, maybe you noticed my treatment occurred on this day. Not really a great way to be celebrating, but in a strange way it was the best way since the goal is to keep me around for future anniversaries. How fortunate I am to have someone who is willing to help me hold onto life. I feel very thankful.