Again, it’s hard to believe it’s been two months since I last posted in my blog. I usually like to post when I have good news or potential solutions to challenges. I currently have challenges without solutions, so I haven’t been thinking of posting.
Georgia, who does the actual posting for me, had to remind me that it is time. A warning that this may be difficult to read since it’s been hard for me to write.
I want to reframe news as neither good nor bad. It’s just what is. I’m sharing with you my current experience without putting a judgement on it. My symptoms of tiredness and shortness of breath have continued, and in addition I have had a cough for at least a month and have an uncomfortable feeling of fullness when I eat or drink. The symptoms seem digestive, but I don’t have nausea; although I frequently feel like throwing up. I have a barf bag in my purse at all times just in case. My doctors have suggested various anti-nausea medication, but nothing has helped.
The current theory is that tumors are pressing on my esophagus and/or stomach, giving me the feeling of fullness and wanting to throw up. A CT scan was done last week to look for the culprit. I don’t understand many of the words in the CT scan report, and I haven’t yet met with my oncologist to interpret it, but there are some things I can understand. It specifies “bilateral pleural thickening with multiple bilateral pleural nodules/masses.” I understand that to mean there are masses in the lining of my lungs.
In my last blog, I was anticipating having my lungs drained again because I assumed there was fluid in the lining of the lungs again. It seems there are tumors rather than fluid. When I saw my pulmonologist a few weeks ago, he did a chest X-ray and compared the fluid in the lining of my lung with what it was two months ago. He said it hadn’t changed, so couldn’t be explaining my worsening symptoms. Draining wouldn’t make a difference. Now that we know there are masses instead of fluid in there, draining isn’t even a possibility.
My naturopathic doctor read the CT scan report and said, “I think there is a good chance that something showing up on imaging is causing irritation and/or pressure that has been contributing to your recent symptoms. When the bronchi, pleura, and/or diaphragm get squeezed or irritated in any way, symptoms like coughing, vomiting, etc., are fairly common symptoms. These are sensitive structures and, when they are irritated, the body’s natural response is to try and expel something.”
So far, the consistent message from my doctors is that my only choice is to learn to live with these symptoms. They seem to be caused by the cancer, and we are already treating that to the best of our ability. My oncologist has ordered another Foundations One test to see if there is any new targeted therapy that my cancer is responsive to. When I had that test done three years ago, there was nothing. But something new may have been developed since then. Worth finding out, but I’m not optimistic.
I’ll repeat what I said in my last blog because it’s still true. I am continuing on the protocol of alternating taking Estradiol and Arimidex (a month or two each). When I’m on the Estradiol my cancer marker numbers go down. When I’m on Arimidex, they go up. One would expect the opposite, but it seems like the Estradiol confuses the cancer enough that it regresses temporarily. I’ve been on this protocol about a year now and we have all been surprised by how effective it seems to be in controlling the growth of my cancer. My oncologist predicted in July 2023, based on PET scans, that I would be dead by January, 2024.
I said in my last blog that I was referred to the heart valve clinic to be evaluated for a procedure because of mitral valve regurgitation. The heart valve clinic did a treadmill stress test and determined that my mitral valve regurgitation wasn’t severe enough to recommend a procedure. A mitral valve procedure is complex and risky, and they didn’t think it would make any difference. They also don’t think it is severe enough to be causing my symptoms. So that option is off the table.
For decades I’ve learned of my cancer growth from blood tests and PET scans. I didn’t have symptoms until now. I was always able to find solutions to stop or reverse any new cancer growth. I knew that couldn’t last forever and it seems like I’ve run into the end of that strategy. Now I have symptoms and the strategy being called for is acceptance.
I’m in a new phase of this 35-year cancer experience. I appreciate a frequent reminder that I’m a spiritual being having a physical experience. Spirit takes precedence over matter, always. That’s why death is not scary and my spirit is thriving. The process of getting from here to death feels a little scary and it helps to not be taking this journey alone. Thank you for loving me enough to walk this journey with me.
Jan, I love the last part of this blog – that you are a spiritual being having a physical experience. That’s my perspective entirely. You also know that I hold you in my heart, and am very glad that we know each other and are walking this journey together, as well.
🙏🏽🫶💕
Roxana!
How are you doing???
We spoke, via text or email, ages ago. I came to know of you through “Cancer Talks” . You were living in New Mexico at the time.
Anyway, I hope you’re doing okay.
Gratefully,
Meg (in Michigan)
And when you think of the 25,000 people whose lives have been touched by you through Cancer as a Turning Point and the life you’ve allowed us to be part of, know that those here and those departed are all with you in spirit as you continue on this journey. You are loved.
Jan, your acceptance with grace and clarity continue to amaze me. You continue to help so many of your followers with your story. Thank you. Blessings!
Dear Jan,
You have done so very much good for so many for so long, more good than any several hundred others in this world. You are a great blessing.
Now I ask God to hold you close, to steady, comfort and encourage you. Of course you are a spiritual being having an earth experience! I, another cancer patient, am, too. And I too do not fear death for the same reason you do. The day will come when, as I’ve experienced being with 3 loved ones through their transitions, your spirit is released by your tired, spent body to soar free. As I witnessed this happening with three loved ones, it was absolutely a sacramental experience for me, and my reaction was not sorrow but euphoria that being trapped in their worn out vessel, given them in which to make their earth voyage, was over and, ageless, wild and free, their spirit soared. May it be so for you as I believe it will be for me.
Love and Blessings,
Norma Jean
Dearest Jan, thank you so much, again, for sharing so openly about this journey you have been on for 35 years. You are a brave and strong warrior soul. Acceptance can be so hard, and sometimes wobbles, but ultimately, it is a relief. You are so right that you are not alone, and though we don’t know each other personally, I feel as though I do know you because you have been so generous about sharing who you are with us. And I am deeply grateful, and your life story has been a great comfort and encouragement to me. I am holding you in my thoughts and prayers, Jan. I hope you can find some relief from the physical discomforts.
Dear Jan-
So many thoughts of gratitude for all you have done & are doing. What a remarkable person you are to share your energy & thoughts all these years. Thank you so much. My love & thoughts are with you as you tread this rocky path. Gather your strength, brave warrior & carry on as you always have. Take advantage of all there will be offered to ease your transition. So many people are loving & supporting you! Wish I could do more to help, but I know you have a strong & capable team to help you. Love never dies.
Dear Jan
Thank you for being so open and candid about your journey.
It is a blessing and a comfort to know we walk together on this path.
Love,
Meg
Jan, I first met you in the late 1990s in Santa Cruz.
I’ve known you for your generous heart, empathy and kind words and that’s what I offer you now.
Your advocate sister
Dear Jan,
Sharing your journey for the past 29 years has been a blessing. Thank you for continuing to share with so many of us these most recent developments. Sending prayers to you for ease and peace. Much love, Marilyn
Dearest Jan,
My life changed in 2010 when I attended my first Cancer as a Turning Point conference at 36 years old. After finishing my cancer treatments the following year, I left a high-level CEO position for a low-paying job in social services. I divorced my husband and began to rediscover my Self. You were, and continue to be, my inspiration. I owe my “new life” to the gift of wisdom and resources you have shared over these many years. I became a therapist and have channeled to countless others the gifts you have given to us; so I can only imagine all the other ripples you have created through the countless others you have touched.
Know that we are infinitely connected with you! Love and appreciation for you and honored to continue to share your journey. Love and positive energy surrounding you!!!
Annie Rosenberg
Dear Jan,
I am deeply moved and touched by your honest and straightforward sharing. And I am even more deeply moved when I remember how many, many years you have been doing exactly this.
I was so fortunate to have been diagnosed 22 years ago and have benefited from all the wonderful offerings that you put out via Healing Journeys, especially the Cancer as a Turning Point workshops. They were wonderful, informative gatherings that enriched my life and gave me courage to keep going.
I cannot thank you enough Jan. You are an extraordinary woman who has given so much for so long and I am so deeply grateful.
May you be held in grace and love through this next period of your life,
With much love and many blessings
Erica