Never Mind Doc

Everything about my infusion last Monday, July 7th, went smoothly.  I saw the PA, and we discussed my two concerns. One, my acid reflux is back full force. It really can make my days miserable. She said I could up the dose of the current over-the-counter remedy that I have been taking. The statistics show that 9% of patients on TDM1 experience reflux. Since I have had this in the past, I can't say for sure my treatment is causing this, but I did not have this problem with the other treatment. On the 25th, I have an appointment with a gastroenterologist. Hopefully, he will be able to prescribe something to help relieve it. Second, I had her check two little red spots on my neck and one on my chest. Those spots were worrying me because, believe it or not, breast cancer can metastasize to the skin. The more I read the more I find this disease has no boundaries. The verdict for the red spots was not cancer, whew! What they are is still unclear. For now I am not going to worry about them.

On Thursday, I met a new oncologist. This doctor was to be a new member of my team, one that would be able to order the drugs necessary for my treatments in Wilmington. While speaking with him, I asked how often he does brain scans. His answer made me remember my understanding that insurance companies, not the doctor, make the decisions about what tests I can have and what drugs I can take. Most tests are only allowed when there are symptoms -- unless it is an approved age-related screening like a colonoscopy or a mammogram. Once you have been diagnosed with cancer it seems to me screenings for metastases should be mandatory, but they are not. That may be because of the desire to limit radiation exposure, or perhaps there just isn't enough money available from the insurance company to pay for additional diagnostics. Since my disease, the HER 2 neu kind, tends to metastasize to the brain more often than other types, it seems only logical to have brain scans at least yearly whether or not there are symptoms. Treating a small tumor usually has a more favorable outcome for length of survival than does treating a large or numerous tumors. But, no, finding cancer when it is small is not the goal, so no brain scan for me right now. Sure, I could make up some symptoms, but I don't want to do that.

After three hours of mostly waiting for my blood tests, CT scan, MUGA scan, and next infusion to be scheduled, I finally felt that I had accomplished the goal of changing treatments to a facility closer to home.

On Friday that all changed. The nurse from the new oncologist's office called and said, "Your insurance is terminating on August 1st. If your insurance is to continue under the same plan or if you change insurance companies, we will need your deductible paid in full prior to any treatments." Our insurance is being renewed -- thankfully -- but and it is a big BUT, our deductible is $10,000! Nope, that amount of money doesn't exist in any of my bank accounts right now. The hospital in Chapel Hill has never asked for a lump sum payment of our deductible. Instead, they set-up a payment plan which is allowing us to manage the huge amount of debt we incur each year I live. The final words the woman said to me before ending our phone call haunts me still. I said to her, "I guess I will have to continue treatments in Chapel Hill." She said, ". . . if they will take you back." Good grief, I am at the mercy of so many people.

Today is Tuesday, one week and one day after my infusion. I spoke with the nurse navigator in Chapel Hill yesterday, and my treatments can continue as usual. It is disappointing after the many weeks it has taken to try to be treated closer to home to have it all fall apart because of our inability to pay for the switch. At least, the up-side is my daughter will be attending UNC-Chapel Hill in the fall which means I will be able to see her every time I have an appointment. I am happy about that.

Next appointment, scans will be reviewed. NERVOUS

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.

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.

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.

Beginning TDM1 (Kadcyla)

TDM1-Kadcyla

My cancer has progressed.  The progression actually was noted in the last scan from January, but no one was alarmed by it --nor did they tell me -- because it was only one lung nodule that had enlarged and that was only very slightly. This last scan showed that same nodule had increased 3 mm -- still slight, but definitely an increase. Also noted on this last scan were some shadows called groundglass opacities indicative of new nodules in the bottom lobe of that same lung. Although the progression is considered small, it is significant enough to warrant changing treatments.  The new drug I am beginning today is TDM-1. It is a chemotherapy drug attached to a targeted therapy. The side-effects are minimal--unless I am one of those unusual cases. Severe side-effects could include bleeding gums, nose bleeds, and bruising from low blood platelets. I will take this drug through my IV port every 3 weeks.  Twelve (12 ) weeks from now I will have another scan. It sure would be nice to have a good report.  Good reports are happy days indeed.

Am I scared that this drug might not work? Absolutely. Everything with cancer is scary. Living is scary. Cancer is scarier because I know what is going to kill me,  and it will kill me sooner than I would like. Ok, people, I know I could die from a car accident instead. Chances are the cancer will get me first.

I am adding another oncologist to my team. Finally, I am taking the necessary steps to get treatment in Wilmington. My three oldest children who are in college will be home for the summer. My not missing full days away from home because of treatment will allow me to handle all their different schedules more easily.

So, the me of today is sad, but I am climbing back out of the fog. 

Possible Progression

Possible Progression

I knew this day would come. 

There was a difference in the way my oncologist entered the room.  Her face told me the news. She walked over to the sink and began washing her hands as she always does. This time, though, she didn’t immediately jump into I know you are anxious to hear. Your scans look good.  Today, as the water washed over her hands, she turned to look at me and asked how I was.  I responded, “It seems I am not doing that well.”  She said, “Well . . . there is what appears to be a slight progression.”  She dried her hands and sat down and began to review what was reported about my CAT scan.

I had tried to prepare myself for this moment.  For days I have been going over the scenario of how I would react if told the cancer had progressed.  I remember thinking there is nothing I can do about it.  I will not die today and not even tomorrow.  Along with possible bad news, I also kept hoping that I would once again have the good news of stable disease.  Then I could relax and enjoy life for another three months.

The report stated that there were numerous nodules in the upper lobe of my right lung and in fact those appeared to have increased in number. This is completely different than the last several CT reports.  Matter-of-fact, my last few scan reports have not mentioned the lung nodules at all.  Since there had been none reported, I believed that none were visible.  My oncologist had not reviewed the scans herself, so she could not comment. Since the nodules were now noted, this seemed to me to be a definite indication of progression. But, my oncologist wanted a radiologist from her department to review the scan and give his report before a new treatment was started.  One report of slight progression from one radiologist may not be the conclusion from another radiologist, apparently. 

    

The other concern was a fluid-filled mass in my throat that my oncologist wanted examined by an Ear, Nose, and Throat Specialist.  I would need to have this 1 cm mass investigated before I received my next treatment.  My oncologist did not believe that the mass was cancerous, but it was possible.   More crap to deal with – what fun!

Soon we were discussing the next treatment option.  This would be a drug called ado-trastuzumab emtansine (Kadcyla), previously referred to as T-DM1.  This drug was FDA approved in March of 2013, so it is a very new drug for people like me.  It is a chemotherapy agent, but it is attached to a targeted therapy (trastuzumab called Herceptin) so it targets the cancer cells.  Most Her 2 neu targeted cancer drug treatments include Herceptin. The cost is estimated to be around $9,800 per month and is given through IV infusion.

If I am given this new drug, I will have thoughts of worry for the next three months until the next scan.  The new drug may not work.  Maybe it will.  And so there go my thoughts, bouncing back and forth from bad to good, and good to bad.

I almost lost control of my emotions as we talked about changing treatment.  When I thought about possibly losing my hair again, I could feel my body begin to shake.  My hair, to have it, makes me feel more like the old me.  Losing it is quite devastating and ridiculous at the same time.  It is just hair, but it gives the illusion that I am just as healthy as I was before April 1, 2013.  Fortunately, the side-effects of T-DM1 don’t include hair loss.  

After my initial shock, I regained my composure and looked down at my notes.  I was curious if my moving on to a new drug would disqualify me for any existing clinical trials.  Trials sometimes don’t take people if they have been given certain drugs.  Dr. R. said that there were no trials on-going that would offer any drugs any better than this new option. 

Genomic Profile

Also, I inquired about having a genomic profile done of my cancer in case certain characteristics of my cancer could be matched to particular drugs.  My oncologist said yes this could be done.  At UNC there is research program called UNCSEQ .  A sample of a person’s blood and a sample of a person’s cancer cells are taken.  My previously taken cancer cells are in storage so no need to go through another biopsy. Then DNA sequencing is done of the cells from both samples.  Those are then compared looking for differences and similarities in the genetic codes. There would be no cost to me.  The results would be reported to my oncologist including any particular results showing a genetic component that could affect my children.  The entrance into the research program was simple.  I signed some papers and blood was taken from me. I was told that results could take as long as 3 to 6 months.  At least something productive did come from today.

Receptor Status Change

The last of my questions asked of Dr. R. was about testing my tumor to see if there had been any changes in the receptor status of my cancer.  Currently, I am Her 2 neu receptor positive.  There are an abnormal amount of receptors on the outside of my cancer cells.  Because of this, the cell gets its signal to divide and grow from these receptors.  This over-abundance has caused these cells to act abnormally.  Other receptor positive cancers involve the hormones estrogen and progesterone.  Their mutation causes them to behave abnormally when these hormones are present.  There can be any combination, positive or negative, of these three receptors. I discovered something from her explanation of my not needing this testing now that I had not known.  All breast cancers change in various ways overtime – I knew that. That is why treatments must change.  I learned that breast cancers that are positive for a particular receptor can lose these receptors and receive their growth and dividing signals through another pathway.  They can lose these receptors, but the interesting part is once they are negative for a receptor they cannot become positive.  Since I am negative for the estrogen and progesterone receptors, I will never be positive and never have the option of being treated with the drugs used against it.  After thinking about it, I realized this new knowledge has brought me a new layer of fear.  Dr. R. said that if she noticed my cancer becoming highly active, she might suggest testing for the receptor status. If there was a change, my cancer would be TNBC or Triple Negative Breast Cancer.  That has fewer options for treatment. Yup, a new layer of fear added to the mountain of layers already within me.        

My Nurse

Interesting incident occurred as the nurse was trying to organize my appointment with the ENT and to plan for my treatment the following Monday.  Before she spoke to my husband and me, she closed the door of the room then proceeded to tell me she had known on Friday the results of my scan.  (I had requested at my last appointment that as soon as the results were known that she call me.)  She apologized to me, and said she had “chickened-out”.  She did not want to give me the bad news.  I really wasn’t sure how to take this nor do I still. While I do appreciate her thinking enough of me to not want to tell me unpleasant news, I feel that she neglected to do this part of her job.  It really isn’t a question of whether she wants to give the news or not.  If she had not told me, I never would have known.  For that, I appreciate her honesty.  If not for her guilty conscience, I would have continued to believe that the results had not been received until today.  In the future, I will just wait until my appointment to receive news.  It won’t change anything anyway.  

My Rant

I need to rant for a moment . . . I should have been called by phone by someone.  At the very least to readjust my appointment until all the facts were available.  If my treatment was to be changed, I wouldn’t have received treatment on this day anyway.  The insurance company has to approve the new treatment.  Seems it would be more efficient to call me, let me know that the results of the CT scan needed a second opinion, and call me back to schedule a new date for treatment.  Instead, I drove those 2 ½ hours, had my port accessed, only to find out that I have to return a week later.  Time is important no matter who you are, but when you know for sure that you only have a short amount of time left as a breathing/thinking human being, the more important time becomes.  Yeah, I know, my visit allowed people to be paid today allowing them to feed their families. I just hate to think that money is more important than implementing the best and most efficient method of handling a patient’s time.   

The Unexplained Mass

Tuesday, I went to the Ear, Nose, and Throat Specialist.  He examined my scans for the questionable area and read the part of the report that described the fluid-filled mass.  A long tube was placed down the left side of my nose so he could view the mass.  It was located at the base of my tongue within the curve that becomes the epiglottis.  After viewing the area with the scope, he put a glove on his hand and put two fingers down my throat and pressed on the area.  The procedure wasn’t so bad.  He had numbed my sinus passageway.  Amazingly, I did not gag as much as I thought I should have.  In the end, he called the mass a Vallecular benign cyst.  Whew, I can push that worry to the side.

The Second Opinion

This Thursday, the radiologist in Chapel Hill will review my CT scan comparing it to the scan from January.  Then, probably, Friday, I should get a call (or maybe not) to let me know if in fact there has been progression.  It would be nice to hear that there is not enough evidence to say for sure it is progression and that I can remain on my current treatment. I feel really good physically right now and I really hate to see that change.  Plus, I was so hopeful that Perjeta and Herceptin would keep me stable for a long time.  It has been 12 weeks without the Taxotere.  If there is progression, it makes me think the Taxotere was doing all the work to keep the cancer stable.  My doctor said there was no way to prove this.  I think trying Taxotere would prove it, but no! I do not want to do that. Still, I have to wonder if I had not asked to try just the targeted therapies, would I possibly be changing drugs this Monday.  At least my chest tumor pressing on my vocal nerve is still stable.

So, I may be moving on to a new treatment.  Not the kind of news I wanted to hear. 

My next appointment is Monday, May 5^th.  I will post about it next week.

Lisa   

Supernatural or Coincidence

The drugs Perjeta and Herceptin are a wonderful combination in terms of side-effects. I am hopeful this combination will last for some time because I really feel quite well in all things cancer related. Years would be ideal. I have heard for some people, this is their reality.  Maybe it will be for me too.

Supernatural or Coincidence?

In the last two weeks I have had two interesting experiences that caused me to ponder, as I often do, the “whys” of the world. For me, there is either a scientific explanation for the reason something happened or there is no reason at all – it just happened.

I don’t believe in anything supernatural. Well . . . except the supernatural event that made those three guys on the left so darn appealing.  Wait a minute . . . it's not supernatural – it's in their genes.  For those of you who don't know who those guys are, they are actors from a TV show called Supernatural.

Black holes I cannot explain.  My 10-year-old daughter (oops, April 6th she turned 11) can explain it and so can an astrophysicist.  Even though I can’t explain it, I know there is science behind a black hole's creation. It is not supernatural. 

There are some medical events that seem supernatural.  Why does one person survive but someone else with the same treatment and seemingly the same cancer does not.  I would even refer to those instances as miracles although really they are not.  There is a scientific reason found in a cell’s biology. It is not supernatural.                            

The two events that happened to me recently made me pause, for just a brief second, and think -- hmm, that’s interesting. When events happen that seem so out-of-the-ordinary, I can understand how someone might believe a supernatural intervention must have caused it to happen. But, I am too logical. My brain brought me back to my reality that explains these events as nothing other than pure coincidence – happenstance.

One week and three days ago I received flowers.  One week and four days ago I answered my cell phone even though the number was unknown to me, not something I usually do.  The person on the other end said, “You may not remember me”.  Though I had not seen this person since maybe as long ago as 2005, I remembered him immediately. 

On April 1^st it had been one year since I heard my oncologist give me the news that my disease had progressed beyond the breast.  I was receiving the call because word of my illness was reaching people I have not seen in years.  That is pretty amazing really because I don’t go out that much.  I assume someone must have seen me in some store wearing my head covering which doesn’t really conceal what is happening to me.  

Earlier in the day that I received the phone call, my mind had wandered back to the years that I was a member of a dog club, a dog club with individuals that taught me so much about training dogs.  I was a member for 5 years, taught some classes and was on the club’s board as their secretary for 3 of those years.  I had such a great deal of fun training my rescued border collie.  At 8 weeks of age that bundle of fur and I became a team.  Jet and I eventually entered 7 agility competitions and came home with 6 first place blue ribbons. But, then my children became heavily involved in extra-curricular activities so I resigned from my volunteer work with the club.

There are a few not so great memories too. Jet, my canine partner, had some fear aggression issues toward some dogs. His aggression would be a quick lunge toward a dog, and then it would be over. I felt like it made people uncomfortable to bring their dogs around me for fear that the lunge could turn into something far greater -- understandably so. It could have, if not for human intervention.  This was a source of frustration and sadness for me. In Jet’s youth we owned two other dogs so it was possible for him to experience social harmony with other canines. This was again proven over the years with our adoption of 4 other dogs. His unfriendly behavior toward some dogs did not offer me complete social harmony with the club, though.  I always had to be aware of what he was doing. 

As I thought about the club, I also remembered an incident that occurred with one of the members and his dog.  I thought about what I might have said differently to some of the members in that person’s defense. His dog had misbehaved, he reacted.  I certainly was no stranger to having a dog that misbehaved. A few hours later the phone call came.  What a surprise! It was the person I had been thinking about. It was so good to hear that he was doing well along with other members that were still part of the group.  Though this event did seem to exhibit supernatural tendencies with an out-of-the-blue phone call from someone I was just thinking about that I haven’t seen in years.  But it wasn’t, nope, just a simple random coincidence.

Then today, in the waiting area at UNC hospitals, I was forced to sit in a seat I would not otherwise have placed myself simply because I like to sit in places away from other people.  The only seat available was between a woman and a man.  As I sat down the man’s face became familiar to me.  I recognized him immediately. At our initial meeting, I had a conversation with his wife, but today I spoke only to him since she happened to stay at home on this day. In my post of July 29^th, 2013, I referred to his wife as the Godly woman because she spoke mostly of how good God is.  Rengate Austin, I discovered, is doing very well. We had a great conversation only to be ended by the summoning of him to an infusion chair.  I am pretty confident he didn't remember me, but I don't care. It was just nice to see and hear that another cancer patient was doing well in this path in life we did not expect to take. As we talked, he said that we are no different than anyone else in this world because the end result is the same.  We all die.  No guarantees of tomorrows for anyone.  I agreed.  I also learned that he is still in the same clinical trial that he had begun when I first met him. He is paving the way for a new treatment for some lung cancer patients.  Was this a supernatural encounter – an encounter that put this person in the same place as me on this particular day with only one seat available for me to sit in? Honestly, the odds of this event occurring are not very good.  But, no, it was just another simple coincidence. 

Side-Note

My pulmonologist told me just last week when I saw him for my allergy symptoms that when he graduated from college there were 6 different types of lung cancer. Now, there are many many more. That is why it is so difficult to find a cure for any type of cancer.  So many cancers; so many subtypes; so complicated . . .

The Infusion

Once a chair was available for me, it still took a while for the infusion to actually take place.  I was weighed, asked if any of my medicines had changed, my port was accessed, blood drawn, medicines ordered, and food, drink and a warm blanket offered and provided. Today a new question was asked.  Do you feel safe in your home?  I learned that the staff is now required to ask each patient this every time they are seen at the hospital.  That question will be asked along with have you ever smoked?  I was told by a nurse once that the smoking question was asked for governmental statistics.  Why?, she didn't know.  Of course I don't want domestic violence in anyone's home, but somehow such a question seems odd - just a little artificial- or perhaps, I thought, the people running the government must be trying to make sure their programs continue to be operational. In the future who knows what questions will be asked; questions such as are you practicing safe sex, are you eating 2 servings of vegetables each day, do you wear sunscreen when in the sun, do you have guns in your home (my kids’ pediatrician asked that one), and finally do you have alcohol in your home? Well, we have a program for that. Could more questions soon be coming my way before my cancer treatment can even begin?  I know people need or want help for variety of reasons.  A hospital can feel safe, but is this question or better yet is the service necessary?  Aren't programs already available to help in these situations? A scared person could reach out for help and social services could be called without actually having to ask the question. What would the hospital do anyway if I had said No, I do not feel safe?

These questions swirling around in my mind prompted me to ask my nurse.  She was happy to explain.  Apparently it has been protocol to ask all in-house patients this question. Now that the in-house and out-of-house patient clinics are using the same electronic records system, all patients are now asked that question including me, an out-patient. If someone said yes to the question then Beakon would be called. At first I thought Beakon might be the government agency I referred to earlier. The internet educated me.  Beakon is a service provided by UNC Hospitals. They would be called and would come and evaluate what kind of threat the person was experiencing. 

After digesting the nurse’s comment about family members being asked to leave so the person could respond without any inhibition, I began to realize that maybe the abuser, never wanting the secret of what they are doing to be known, may not ever let the person being abused go out into society alone. The hospital might be the first and only opportunity that someone could ask for help. Other questions kept entering my mind.  What are the statistics of how many people are actually helped by this service?  And, once Beakon is called, do they bill your insurance for the service?  Also, if the threat is severe enough, do they immediately prevent you from going home when released?  Is the hospital now a safe-house for people trying to get away from domestic violence?  Is this another way for the hospital to dig into your pockets or at least your insurance company’s or is it a service provided for free by the hospital?  Well, nothing is free. I did see on the UNC Hospitals website that Beakon accepts donations so maybe the money to run the program does not come directly from the people in need of help. But if my treatments are higher than they should cost because it is helping to fund the programs offered by the hospital then that is the point where I say enough is enough. I am not against people looking for ways to make money nor am I against my giving monetary donations, but I don't want to pay for it unless I know about it. Hopefully it is simply a great service that is needed and used by many to prevent abuse and to help people of domestic violence.   

So there you have it.  Infusion #17 is history!

Next time will be scan review time. 

Oh, and I also started going without a head cover around the house.  Eyelashes are starting to appear too, very thin tiny little hairs though.  I can’t wait to put on mascara again.  No eyelashes -- not a good look for me.