How We Find Ourselves When Given a Cancer Diagnosis

Off and on I participate in surveys concerning lung cancer. Often the questions spark old memories, as they are supposed to. Sometimes the stars align and a comrade in arms ( another cancer patient) and my participation may go along the same subject matter. This happened recently when I was asked what I would have rather had happen in an 'ideal world' when I was first given my initial diagnosis. The following is a note I wrote to the person who wrote the description of the John Hopkins approach. Yesterday I was involved in a telephone interview concerning my diagnosis of lung cancer in 2012. One of the questions was how in 'an ideal world' I would have preferred my diagnosis to be given. After reading your description of the John Hopkins approach, that would have been close. As it has all turned out I have gotten almost all of that care and information over a three year period and am now in a clinical trial for Nivolumab. Every two weeks for the past ten months I have participated and my scans have showed stable with some improvement. I live in the second largest city in my state but at the time of my diagnosis there was no lung cancer specialist close to me. I ended up going for two separate opinions besides the initial diagnosis. I have had more luck than sense in my journey- and I wish all those who receive a lung cancer diagnosis would be able to take advantage or have at their disposal the attention and care that is provided by a team like the one at John Hopkins. I believe in clinical trials for all of us because of the advances that can take place when we do participate or can participate. I was so impressed by your description that I wanted to say so and share the description with others if that is all right with you. Here is the description and it is wonderful and ideal. Lung Cancer Multidisciplinary Clinic

"No one wants to hear that they have lung cancer. But if that is the diagnosis, then getting immediate, expert, coordinated treatment is key to the best possible prognosis. Whether a patient has been recently diagnosed and/or is seeking a second opinion, the Lung Cancer Multidisciplinary Clinic at Johns Hopkins offers access to a team of lung cancer experts who can review the diagnosis and create a lung treatment plan in one day. Typically, the process of diagnosing and developing a treatment plan can take weeks, maybe months, as the patient meets with each doctor separately and the doctors confer about treatment. In the multidisciplinary clinic, patients meet with a nurse practitioner, a palliative care specialist, and a medical informaticist in the morning. In the afternoon, patients meet with the team of lung cancer medical specialists, leaving with a treatment plan and the peace of mind that comes from having and understanding their diagnosis and a plan for treatment at a medical center considered among the best in the country for treating cancer. The day at the clinic includes: A lung cancer education session An opportunity to meet with a medical informaticist to learn about resources for lung cancer An opportunity to meet with palliative care specialists An medical evaluation with a resident or nurse practitioner Individual consultations with lung cancer experts, including a medical oncologist, radiation oncologist, interventional pulmonologist, thoracic surgeon, and radiologist, depending on the specifics of the patient’s health status and status of lung cancer A treatment plan meeting with everyone present to present the treatment recommendation. Prior to the clinic, patients receive all the tests they need for an accurate diagnosis and to create a treatment plan."

20th Infusion of Nivolumab & Counting

I began my clinical trial in October of 2014. Every two weeks my son drops me off at the infusion center, I have my blood drawn, and then I see a nurse who takes my vitals, a research coordinator who asks me questions about side effects (I have had little to none- but there have been challenges) and then the doctor comes in who has always told me I am doing great. And, I am! I have been stable with some improvement for almost ten months on Nivolumab – a new immunotherapy drug. Here have been the side effects. Rash in the beginning that slowly receded, a cough that has receded, shortness of breath, not as bad, runny nose. In the beginning I had slight flu like symptoms- but that didn’t last at all. All in all pretty good quality of life for a Stage IV lung cancer patient. I have frequent CT scans so that I am monitored on a regular basis for progression. There has been none. After my infusion is over, my daughter comes to pick me, we drive over to Wendy’s and I get a hamburger and fries, sometimes a Frosty. Then I go home and fall asleep. The next day I feel pretty good. And life goes on.

“Cancer is a word, not a sentence.” – John Diamon

Last night I made sure I was sitting in front of the television at 9 p.m. to watch Ken Burns, Cancer:  The Emperor of all Maladies.

I thought it was important that I watch this program.  After all, I have been in a battle with cancer for over two years and want to be informed about the disease.

After the first terrible scenes about the little girl and her parents fighting, crying and suffering from a disease that can only destroy, I turned the TV off.

And then, I thought of a time in my life when I was in a different kind of battle and a great old man gave me sound advice.

As a young woman (late teens) I drank a lot- and after I was married I began to drink more (good sign that I should never have gotten married) - so I became a member of a twelve step program that wishes to remain anonymous.   Now, I was not forced to do this, no court sent me there.  I just knew that drinking and I weren’t good pals.   At that time (March 11, 1974) I was the youngest person in the area in the program and I learned a lot, and met people from every background from rich to poor, Democrat, Republican, black, white, fat, skinny and everything in between.   It was a hard knocks learning experience. 

The experience of spending hours in these meetings enriched my life and as I entered the end of my twenties I was in college and thought it might be good to go into social work and specialize in substance abuse.  After all, I had spent almost a decade in and around this challenge. 

I went to talk to a man named Jack B.  who at that time was the director of a substance abuse program here in my hometown.  I had gotten to know Jack over the years and he had become a friend.  I told him my ideas and what I thought I could accomplish.

He listened attentively and then said something that has informed my life and every challenge that I have faced since.   

“Don’t make your illness your life, if you do there will have been no point in recovery.”

That helped me make my decision and it has also helped me make many decisions since then.  

I approach this diagnosis of cancer differently- but I approach it with hope- and on most days refuse to even let the monster in.  I find from reading posts that this is what most people who are living with cancer do- they approach the day with a positive spin and refuse to let cancer dictate their days. 

In the back of all of our minds is that beast lurking, wanting to destroy us, always the fear of death, of recurrence, of horrible side effects from treatments, the fear of the day when to doctors says, ‘we really have no other options.”  

I write about my thoughts on cancer daily- and then I lift up my pen to write about other things, and enjoy my life, my house, my family, my good old dog, and on this day, the sunshine.

We carry on, tending to our everyday lives and squeeze out every bit of joy we can- and neglect the word cancer as much as possible.  

“Courage is not the absence of fear, but rather the judgment that something else is more important than fear.” – Ambrose Redmoon

Periodically, I go back and re-read those posts I wrote in the beginning, when I was first diagnosed with cancer.   I also read posts at What Next in the early times, or Inspire.com.   

Yesterday, I was reading a post I had written about how scared I was to get a PET scan- and that I needed courage to do it.   I know now that emotions run wild during the time between diagnosis and finding the right treatment plan and the most comfortable health care team.  I didn’t know that then and so I was flailing, asking for help.

Most of the people at the sites that I visit and involve myself in are supportive and kind- but then there are always those that rub a person the wrong way.  Here is a statement that I received from someone when I described how I felt about getting a PET scan.

“I understand that you are upset, but I guess I don't understand what your questions are or what decisions you need to make. If you didn't have the PET scan and your doctor didn't know if the path report from your biopsy was available, what is his diagnosis based on? Decision making requires information, not courage. Ask for a copy of your pathology report from you biopsy and get your PET scan. Until then you are needlessly scaring yourself by assuming the worst without any information to back it up.” –Crabby Person who had not read any of my prior posts.

If she had she would have known that the oncologist (as inept as he was) had gotten the biopsy and that I had been diagnosed with Stage IV lung cancer because the cancer was in both lungs.   The PET scan was to see if the cancer had spread.  Lucky for me, after I finally did go ahead and get the PET, it had not.  

I am a big fan of getting help online.  If I had not found WhatNext.com I would never have known to go to IU Simon Cancer Care in Indianapolis and I would have never gotten to be under the care of Dr. Einhorn- which eventually led me to a clinical trial that I am now participating in.  

However, when we are dealing with cancer our own judgement and the judgement of those who care for us become paramount.   We need all the information we can get, and one skill that is needed is the ability to be able to tell the difference between flowers and weeds.   There are lots of weeds online- lots of people giving opinions- and in many ways that’s ok. 

In the end, though it does take courage to move ahead in treatment.   Should I go ahead with chemotherapy or not?  Should I get a port or not?  Should I tell my story or not?  Is it necessary for others to know about this battle?   Should I try to find financial assistance?  Should I participate in a clinical trial?  

Will I survive?   Am I a burden to my loved ones?   Do I want to be?

All of these questions and so many more are part of the cancer roller coaster- and it all ends with you.

The Day before Cancer Treatment

The Day before Cancer Treatment

When I began treatment for lung cancer in January of 2013, I had a whole crew of people in line to drive me to Indianapolis.  It took six hours for the treatment alone.  That did not count the period of time it took to get blood drawn and the visit with the oncologist that always took place before treatment could occur.  The day before was a flurry of logistical arrangements.   My daughter or son or both would go with me and my grandsons often went too. 

My grandsons went along because there was no one to take them to school or to watch them when they got out of school.  One time, my old friend, Rita and my daughter Rita took me down to Indy.  That was a looooong day.    They spent their time looking over the many caps and turbans on display at the IU Simon Cancer Care Center while I spent six hours being infused with carboplatin, taxol and avastin.   

Physically, I would feel fairly good after three weeks of nausea, leg problems (I would eventually develop neuropathy) fatigue, headaches and dehydration.   It seemed that I would just begin to feel good again and it was time for another treatment and the YUCKS would begin again.  

That was when I was on chemotherapy and had to be driven 3 hours each way to Indianapolis.  Lucky for me that only went on for four cycles.  I then went into remission.

Tomorrow I have treatment here in Fort Wayne.   The treatment takes place every two weeks.   I am now on the drug Nivolumab, an immunotherapy drug that causes few side effects.  Note, that I wrote few- not any.   I do get dehydrated- I do feel tired and lethargic- it is not a picnic, but it isn’t the onslaught of chemo either and I am grateful for that.  

I decided to write about this because yesterday I read a comment on Facebook about an old friend of mine.  His wife was also a neighbor and the best childhood friend of one of my sisters.   My friend has cancer and their days are long and arduous.   I don’t think many people really understand how difficult the logistics of cancer treatment can be and how little support there is for that.   Family is wonderful, and mine are great, but the overload cannot be overstated.  

I am happy that now I can have my son drop me off for my treatment and have my daughter pick me up when I am done.   I am still in good enough shape to have this luxury.   I wanted to drive myself, but since I have to take Benadryl with my treatment I am not allowed to- very aggravating.  At point’s friends and even people I have never met have offered to help me – and Cancer Services of Northeast Indiana  and the American Cancer Society   both provide transportation for those who cannot get to treatments on their own- but again much goes into working out those details.

I know that anyone who deals with a serious illness confronts these obstacles- and as time wears on those involved in helping survivors of any type often become burdened and worn out. 

 

The mechanics of cancer is just another spoke in the wheel of surviving.

Two Years Ago Today- On My Cancer Journey -March 25, 2013

Snowed Under with a Cold- What the Hell!!! 

Am I unlucky? Believe me I am not one to think I would get through chemo easy. When I read a post on one of the cancer sites where a cancer fighter said she experienced chemo as if it were a ‘slight hangover’ I just knew she was lying! And, then of course after my first chemo treatment I found out for myself after the urinary tract infection, root canal, and varied other not so sweet ailments that chemo was not like a ‘slight hangover’ or any kind of hangover, for heaven’s sake! What was she thinking??? Anyway, this time around after the initial first three days after chemo when I dropped off the steroid high and crashed – I began to get a little cold. At first, it was just that- a little cold or should I say a ‘slight cold’. ;-) Soon, I was coughing, hacking, wheezing, and blowing my nose at enormous rates of speed. I was filling up baskets of Kleenex and waking up in the middle of the night having to blow, blow, and then blow my nose. It was and has been horrible. I finally went to see my primary care doctor here in Fort Wayne, who pronounced that I had a bronchial infection. Wow! He also said I was weird, but I didn’t see this as a professional diagnosis and went on my merry way with a fistful of antibiotics in my hands and the remembered horrified looks of the receptionist and nurse when I mentioned how much my medical bills were for chemo. LOL! A true Kodak moment (if those still exist in this digital age). This morning I woke up about 4am and wasn’t coughing. I got up to see if the weatherman had been right- and yep- there is a ton of snow outside. Betty, my dog, is soooo happy. She loves the snow. << Yeah, I used to love the snow too, when I was eight and got out of school for a snow day. Now, I like it if I don’t have to leave the house, which will probably be the case today.

At a Crossroads

As I noted in my last blog post, I found out about my clinical trial because I was connected to the IU Simon Cancer Care Center (IU Simon Cancer Care Center- Indianapolis).   Because IU Simon is a teaching hospital clinical trials are a well-known source of care.  That is not always the case with community hospitals.  

 

One of my challenges when diagnosed in 2012 with lung cancer was the lack of specialists in the field of lung cancer in my city.   The oncologist I initially saw (and who gave me my diagnosis) was inexperienced and made me so angry that I decided to seek a second opinion.  I ended up seeking three.   Because I was lucky enough to come into quick contact with WhatNext.com (an online cancer support group of peers) I found support and information there and was led to IU Simon, Indianapolis- one of the leading medical facilities in the nation.  

However, throughout my first round of opinions, I did talk to one other cancer facility about 45 minutes from my home town.   After talking to their oncologist (too gloomy) naturopaths, mind-body specialist, and some other specialist in their multidisciplinary foursome I never heard the word survivorship.  I was given the option of a clinical trial they were running. 

The first words out of the mouth of the nurse running this program were, “Just to be frank, I want you to know that the minute you become involved in this clinical trial we will own you.”   She also called me a cougar because she mistakenly thought my 38 year old son was my boyfriend.  That was so much for the personality of one nurse who seemed quite beleaguered.  Needless to say I had no interest in participating in that clinical trial.

I decided to go ahead and go through chemo with Dr. Einhorn at IU Simon Cancer Care.  

As anyone knows who has been involved in cancer treatment, as a patient or caregiver, cancer is a mind game and will take you to places in your head that no one really wants to imagine. 

After chemo put me into remission, and I had a good long period without cancer drugs at all, the news of progression was disappointing, but not unexpected. 

I was at a crossroads- I felt that if I went the chemo route I would go into remission again, but had been told by my oncologist that it would not last as long as the last remission.   I knew I could try another type of chemo- but that is always a toss-up.   Why not try a clinical trial with a drug that had promising results so far and would use my own immune system to fight the cancer.  

 

I had read about immunotherapy quite a bit after my diagnosis, but it was not yet available when I was diagnosed and still isn’t for most cancer patients.  

The involvement in a clinical trial was a chance for me to utilize this promising drug.  Because the hospital I lived close to (a community hospital) was participating in the trial I was given the access I needed to be able to participate.  Many cancer patients do not take part in clinical trials because of the travel involved.    The benefits to patients and community hospitals are significant when the hospital is equipped to play a part in a clinical trial.

When I was first approached about taking part in the clinical trial I am now involved in with Nivolumab, I set about finding out all I could about the drug.   My peer counselor at Lungevity, Jill Feldman, put me in touch with a man from Baltimore who had been involved in the first Phase I clinical trial for the drug in 2008.   When I spoke to him on the phone, he was excited about the drug, and told me that when he decided to go ahead with the trial his thoughts had been, “What do I have to lose?”   

He is still kicking and in great shape.  

Unlike my friend in Baltimore, my thought process did not work along the same lines as his did when making my decision.   My thoughts were more like, “What do I have to gain?” 

Frankly, I had everything to gain- and I will tell you why in a later post.