Lessons Learned: The Doctors

While I really don’t feel like looking back on my visit to the ER, I realized again the value of each doctor encounter. My team of doctors range from the holistic, alternative, way out there, oncologist, internist, and every doctor in between. I have realized some very important tips and tricks about doctors. First, if a doctor isn’t listening, chances are he/she will never hear you. This is case and point from the beginning of my cancer job. If you are afraid to ask a question from any of these doctors, you have the wrong doctor. If you don’t like what a doctor says, you should listen carefully. Most doctors have reasons for saying their messages a certain way. Some are realists, some are optimists, some are just as afraid of the truth as you are and some choose to ignore the negative. I have learned that each doctor has something to offer and each new doctor usually has something to offer too. They all have their expertise. They all have their strengths. Most importantly, they are people too and they are human. They may shed a tear or two or even lose it out of frustration either with you or with your disease. There are always reasons. I will look at this past weekend as another reminder of how fortunate I am with my team. Yes, the ER doctor was a bit freaked out about my blood counts (remember he is not an oncologist), so I did not force the issue, but smiled quietly inside as these were my lucky numbers. This ER doctor did know a lot about peritoneal cancer. He understood how it spreads and how the cancer  formed. He explained things in basic terms about some of the spreading is like a boil on your skin with a bunch of nerve endings. This could explain the misunderstanding that cancer does not hurt.  Yes, my oncologist (although in Europe) was holding my hand virtually through back and forth emails from Europe. It felt as if he was in the room with me. Yes, my internist called to find out what happened the next day and wanted to know if she could help with anything.

I may get frustrated with my team, but have come to understand them for what they each bring to my race to win. I have also come to love each one of them for the reason they do care in their own way. So, I have learned so much from each of my doctors and I hope you have the same type of team for your children and for your family. Not only is medicine a science, but it is a delicate balance of understanding and knowing your patients. It is not an exact science. No one has all the answers. It is a constant puzzle and game which can be frustrating for all involved. As long as your doctors hear you and hear what you are saying, you have the team. I know that without this team and their knowledge, I wouldn’t be able to embark on my adventure knowing that we all need a vacation from cancer.  I am so excited and looking forward to enjoying every single minute (yes, even the hours and hours on the airplane). Enjoy your summer…enjoy your family.

“As a single footstep will not make a path on the earth, so a single thought will not make a pathway in the mind. To make a deep physical path, we walk again and again. To make a deep mental path, we must think over and over the kind of thoughts we wish to dominate our lives.” Henry David Thoreau

I guess it is like childbirth where you block out certain things especially physical pain. I was “high” on my steroids getting myself organized for the trip during the day on Saturday, then during the evening it hit me. The shot that is supposed to stimulate white blood cells started that night with horrible pain. I was in so much pain that I don’t even remember sleeping which meant most likely Jim didn’t sleep at all too. It is all a bit fuzzy, but got some pain pills and slept the day away. I couldn’t eat or drink since the pain was so overwhelming. I did finally get up around 4pm. I cannot explain it, but when I stood up from my bed, the weight of everything inside pushing against my bones caused stabbing pain. Luckily, Jim kept Alex so busy with activities like 2 hour bike rides, so I didn’t see much of Alex (at least I think I didn’t).

Going backwards a bit, the chemo closet was packed due to the holiday. I was told that they were running behind and were short staffed. I had my new haircut which I am still getting used to….short hair makes for cold head at night. At our July 4 th concert, I had to wear Alex’s baseball cap since I was too cold.  Yes, believe or not July 4th was a cold night and we wore sweatshirts and jackets. I even had a scarf! Some of the nurses said that I could be my Doc’s daughter…I told them I could be his sister since he isn’t much older than I am!

My counts were not good and I know that the only thing we changed was the renal cancer pill. I know I am drug sensitive, but they say it takes 4weeks to respond to this drug. They decide to give me the chemo and a shot chaser to boost my counts. I will go on Thursday to have another heart study and blood test. This way I can be ready for the cruise. The reality of the closet is too much to hide from…seeing a young girl with her parents and her mom wanting to hide her emotions, the gray faces, the statistics of the disease, calculating in my head and ignoring the numbers and statistics…it is a silent scream inside my head. I cannot afford to think in any way other than to keep fighting this fight. My rock star husband hears my scream and feels my pain both physical and emotional. As my nurse told me to take a deep breath in, I turned my head towards my dear hubby and he took a deep breath in matching mine. We smiled and as always secretly hope that these routines would end. So, when we began the discussion of our next steps and a mention of weekly chemo was mentioned, we both simultaneously say, “not weekly”.

 

The fog is still present. I had a low grade fever which was to be expected from the shot. Jim said that he keeps telling me the same thing, but I remember nothing. It is as if I am sleeping with my eyes open or sleep walking. I am unable to focus on more than ½ a thing at a time. This has all become so frustrating. I have new rashes and pains in various strange places. I look like I have sunburn on my hips or a lot of dark freckles. Luckily, I am not wearing any bikinis any time soon. So, as I write lists on dozens of scraps of paper, it will be a game of treasure hunt for me to find these scraps and compile a list when the fog clears.

In the meantime, back on the cancer job…if you can recall my lovely car accident in January 26^th where an idiot with a child in the front seat rear ended us on the way to chemo…well, it seems that an easy process is never just that. All the records that I need which are non cancer records have never been input into the system. This has turned into a case of where did the records go…most likely they are sitting with my uterus in a freezer bank (since UCLA seemed to lost that too). (okay sorry to be so gross) Of course, now I have to deal with a flat liner while I have no recall to have her understand the urgency of getting this deal closed. Oh, did I mention I have cancer? She could care less, I could have said, “someone just entered my house and stabbed me”.  The records woman would go through her spiel of HIPAA laws and how long the process takes, blah, blah, blah. It is good to know that there are some people who have zero passion for what they are doing. I decide not to waste my energy and just stick to the facts while gently begging for a solution.

Then, next on the cancer job to do list: the violation of using a pharmacy outside of a specialty pharmacy. This happens with expensive drugs. I begin to get dozens of emergency automated calls except I cannot get out of the automation, so I start speaking a fake language and then I start singing and as a last resort start screaming, “call 911, emergency, emergency, Engine 51”. This only disrupts Alex’s reading and he asks me who I am talking to. I decide to make the effort and dial the real number only to be told that I should have dialed a different number. So, the story goes and with a slap of the wrist, I am in the clear for getting my drugs for August.  This leads me to the need to set up a genetics appointment to solve the mystery with my history. After numerous calls on this, I am told that genetics does not work Mondays which is the only other day I go to UCLA outside of chemo. I start searching for alternatives only to be told that I need to be seen by a professional genetics counselor. Are you kidding me? I have had so many tests and what would the counselor tell me. “Hey, you have some more genetic alterations and there aren’t any drugs that are FDA approved for those.” I am all about not wasting my time any more.  We agree that they should find someone in the OC, so I can get this new test in my own ‘hood and meet with a counselor so that they could bill my insurance for this process. Now, everyone will be happy.

Last on my list for the job was to follow up on the re-reading of my scan from UCLA. The emails come with the information as if it was the same ole’ story! How do I have something on my trachea? Where did that come from? I want all the cancer junk to be in the abdomen or this is the wish of every person who has gynecological cancer. Oh well, another conversation with radiologist and docs and I decide again that it is what it is. There is nothing that I can do about this except try to find those slips of paper around my house which is the magic answers to what I should pack on our trip.  As we say in our house on a daily basis, “it is what it is”. Let’s try to get through today and hope the fog clears to sunny skies. I am hoping to remember what I was supposed to be doing today.  The last minute is never the best minute, but it may be the only minute where my head will be clear enough to think for myself and possibly my family.  Hope!