So... After all the testing we have a diagnosis. I am not sure it reflects what was originally wrong as that was a lingering problem that went on for months and even a year or two, however we now have something to call it..
LYMPHANGITIC CARCINOMATOSIS
On the Wednesday before Thanksgiving I got another bronchoscopy and biopsy. Because of issues with putting me under anesthesia, they were only able to test one mediastinal lymph node in my lung, but it tested positive for metastatic breast cancer.
Lymphangitic Carcinomatosis has a very poor prognosis. Typically the life expectancy is between 3-6 months which is why I don't believe it is what was wrong initially, because I have been dealing with the symptoms for longer than that. However it is the official diagnosis now.
I received the news on the phone from the pulmonologist at the UofU. He called, told me the results and then told me he knew nothing about the treatment, just that the prognosis is not good. He then told me to follow up with my Oncologist. So in the mean time I did a lot of Googling.
I met with my Oncologist on Monday (Dec 6). I have begun a new form of Chemotherapy pills that hopefully will extend my life a bit longer...the doctor says maybe a year to 18 months. To tell you the truth, I was relieved to hear it, because before I met with him, I kept thinking I only had a couple of months and I just couldn't imagine "wrapping up" my life in a month or two. I mean, I guess the world will keep turning whether or not I get it "all done once and for all". But I kind of want to leave "my house" tidy when I go. So at least now, I hopefully have a little bit more time.
I don't know how long I have, it may be a month or two, or it may be a year or two, or maybe some new treatment will come out and I will live a long time. My health is not good. I require an oxygen compressor pretty much all the time. It is still hard for me to sleep, because I cannot lie down and must sleep sitting up. Some days I feel relatively good and think this is not so bad, and others I am so miserable I don't want to keep living. The evenings are often the worst especially if I have overdone for the day...overdoing being something like going out to dinner.
I think of so many people I would like to see and spend time with before I die, but unfortunately do not have the health or energy to do so. I have many good friends, that I love with all my heart that I am sad to leave behind. Thank you my friends for being my friends. Whether you know it or not, I have learned so much from ALL of you.
I am sad to leave my family. They are among my best friends, and I love them very much. We have so many fun and funny memories together. I wish I was going to be around to make more of them with them.
I am sad I won't get to watch my grandchildren grow up. Some of whom I am only beginning to know and others that have not been born yet.
I am terribly sad to leave my husband. How I have enjoyed our 9+ years together. What a blessing he has been to me. I wish were going to have more time. But I am grateful to know we will have eternity to spend together. How I love him.
I am not afraid of dying, that is something I came to terms with when I
was first diagnosed with Breast Cancer, and then again in 2019 when I
was diagnosed with Metastatic Breast Cancer. This kind of blind sided
me, because for some reason, I strangely never even considered cancer.
What makes me sad is leaving the people I love. I wanted to be a part
of their lives. Once I die, life will go on as it should, only I just
won't be there.
.....the words are inadequate. I rejoice in returning to live with my Heavenly Father and I know this time on earth is such a short time in comparison to eternity. I am kind of glad I will get to miss the upcoming APOCALYPSE 😅 But I did want to enjoy more time here with the people I love.
To quote Forrest Gump... "Mama always said dying was a part of life. I sure wish it wasn't"
"....And that's all I have to say about that."
