The past two weeks have been a whirlwind (actually cyclone) of tests, biopsy, scans, phone calls and frustrations not to mention the emotional component to all of this very shocking news. Experimenting (per the Dr.s) with different pharmaceutical drugs which do not resonate with my body and mind. The worst was ambian for sleep, OMG, I had a horrible nightmare and will never take it again! The only thing that works for me is ingesting marijuana. Being an NJ resident I can get medical weed!
I have been diagnosed with stage 4 lung cancer. The mass is in my left lung and a tumor is pressing on my vocal chords paralyzing the left side, making it very difficult and exhausting to speak. (Now, mind you, some of you might find that to be a good thing...!!!!!) The lung cancer has also spread to my right hip bone and lumbar vetebrae #1.
I began this sojourn with my family physician Dr. Frances Russo in Lambertville who was very proactive and was the one who immediately ordered the chest and abdominal CT scan and gave me the news. She was very compassionate and professional. From there I went to Hunterdon Community hospital to see pulmonologist who confirmed the results and went over the CT scans and his attitude was rather vague yet grim regarding my destiny. The next procedure was to biopsy my lung which meant outpatient with anesthesia then on to the assigned oncologist.
The oncologist confirmed the findings, told me the cancer was aggressive and that it needed to be treated ASAP and in an aggressive manner. Chemotherapy and 15 minute radiation therapies every day for 30 days for starters. This would mean losing my hair and allot of weight, exhaustion and would affect my capacity to work. He also suggested that my life expectancy would be on lesser side. Definitely not up to NASA standards as far as shelf life goes!!!!
With the help and relentless guidance of my great friend Charlotte she insisted that I see world renowned lung cancer specialist Dr. Cory Langer at the University of Pennsylvania who treated her lung cancer about a year ago. Unfortunately my health insurance doesn't cover this Dr. So I asked them to refer me to another Dr. and we found Dr. Alley at U of P (different division). Apart from some health insurance bureaucracy it appears as though I can be treated by Dr.Alley who is very cool and a brilliant lung cancer specialist who works closely with Dr. Langer. (Charlotte thinks he's cute!!!).
Dr. Alley has an entirely different protocol. There is a test that tests for a genetic receptor (don't fully understand this yet) but I'm operating on about 2 hours of horrid sleep a night so my brain is not computing much these days! Anyway if I have this receptor then (in short) I will take oral medications. No chemo! Even if I do have to have chemo. I will not have to have radiation. I won't lose my hair!!!!!! Although I would totally rock that look!!!
He also recommended that I go to an ears, nose and throat Dr. to they can put silicone on my vocal cord so I can speak again. My voice may never come back fully and I may have to have this procedure a couple times a year. I have an appointment this Monday and I am waiting for the genetic receptor results to come back. I also have to get a brain MRI to make sure the cancer hasn't spread to my brain because we all know I am donating it to science!!!!!!!!!!!
I feel so relieved after meeting Dr. Alley. I really appreciated his attitude; cancer is a disease that is not curable but manageable not unlike other life affecting diseases like Diabetes, HIV, etc. The science and technology is improving exponentially and who knows maybe curable in my lifetime.
The moral of my story is that I didn't pay attention to the symptoms (chronic cough). I didn't have health insurance at the time. I misdiagnosed myself and tried to treat this holistically. I thank God everyday for Obamacare making it possible for me and other self employed people to afford health insurance and not deal with pre-existing conditions or dropping your plan. If I had gone to the Dr. a year ago the tumor may have been removed surgically and I would not be where I am now.
It is imperative that we take advantage of the amazing Dr.s and their knowledge and expertise. Health insurance pays 100% for us to have an annual check up.
The system is not perfect, you have to be proactive, do your research, have your ducks in a row and be on top of both the Dr.s the hospitals, the labs and the health insurance companies. It is allot of work and can be very frustrating. But I am choosing to do the work so I can live a very long and full life.
Keep in mind I do have advanced cancer. I am in pain, I have difficulty breathing, I can't sleep, I am exhausted, it is an effort to take a shower much less go grocery shopping and prepare wholesome food. I can't really eat much solid food as my stomach cramps up and my digestive system is completely thrown off. (I am trying to juice and make green smoothies as much as possible). Working has become almost impossible at this point. Once the actual treatment begins I will be able to resume my lifestyle with good rest and food.
Coconut Bliss ice cream has been a savior along with the Netflix series Orange is the new Black.
My journey will be difficult. I am so grateful for all of the amazing friends, love and support I have in my life. Without all of you I don't know how I could do this.
Lots of love and sincere gratitude,
b~
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