alascerca

Hello All, I came here and received such wonderful support when I was initially home after a partial lobectomy (Oct. 2021) and a bit afterward. I feel as though I have taken much more than I have given, and am uneasy about coming back for more, but life has thrown at me many challenges and you have been valuable in my self-advocating with doctors. Not that I have been successful, but that's another story. Backgound: 2001 bladder, stage III; (dismissed and "run off" as dramatic, for over a year) 2005 colorectal, stage III; and (dismissed and "run off" as dramatic, for over 18 months) 2021 lung (adenocarcinoma, stage I (self advocated for biopsy after a PET discovered a nodule; partial lobectomy done 19 October 2021 (an aside: My sister died of her lung cancer Dec. 2021). Kaiser, my health care plan, has not seen it necessary that I have an oncologist. The "go-to" is the icy, indifferent surgeon who did the lobectomy. They let me call oncologist, but even said "I really can't see why you should need an oncologist." So, I am afloat, without a place to seek caring response. In the last month I did message the surgeon, my only cancer touch-point (just writing it underscores the absurdity of this) about feeling a "very heavy chest (don't know how else to describe it). He said, "It's not time for a scan yet. If you are having these problems in your chest, see me or your primary care provider. " WHAT!? Wasn't that was what I was doing!? I finally got in with an available doctor, whom I do not know, who did an EKG and a chest x-ray, which came out fine. She said to me, "You know, you are doing a lot better than you think you are." This is the story of my life: minimization -- and I am so desperately frustrated today. I have had COVID and am on the tail end of it. However, it did NOT make me cough, so "excessive coughing that has irritated the lungs" is not the source of this blood. Situation now: As of three days ago. I began to cough up bright red, fresh blood. Not a lot, but alarming the same. If I added it altogether, over the three days, it would probably be about a tablespoon. Still alarming. Today the blood is scant, as though whatever lesion it might be is healing. I e-mailed my doctor Friday (three days ago), who did not respond. I called the advice nurse to help facilitate my being seen. The nurse called back, and said, "We have an appointment for you to see an available doctor on September 20th. That is over a week away. I balked. She said that I could also go to the ER, and in that way my basic vitals and other tests might be started ASAP. Then they in ER will decide whether or not I need further tests. I detest going to the ER, and am frightened of reinfection with COVID. or worse, some bacterial scourge found in ER's -- MERSA, CDiff, etc.. For several other illnesses, my immune system is almost non-existent. I am thinking that since the bleeding seems to be resolving itself today, I might wait until the 20th, though simply being in a doctor's office (the appointment on the 20th) will not connect me to immediate machinery for a PET or a CT. Alas, I am at sea, and an oncologist would be the one to help me navigate this. My husband and I, absurdly, are doing this navigation, and prioritizing by sheer guessing; we are not physicians. All providers are indifferent to me, and well, I am utterly at sea. Do I go to the ER? Do I wait it out? If I had my old oncologist, I would be seen and scanned immediately. She took me seriously. Now, it's advice nurses, and office medical assistants I am dealing with; all unknown to me. My PCP didn't even bother to call me; she told the advice nurse to tell me to go to the ER. The surgeon (again, my "cancer touch stone," sheesh) wants to do a simple CT. I am thinking that with my history, I need a PET. Providers balk at this. It was the only thing that showed the original cancer, which was detected by sheer accident. Once more, I am being tossed from person to person, all of whom do not know me at all. Questions: 1. Do you agree that a PET is what I should get? If so, how do I articulately advocate for this? I thought of saying this...is it correct/ good? : "I would like a PET scan because of my history and high risk health status, because I would like to know that any potential growth at a metabolic level might be caught, and the CT doesn't do that." 2. If they refuse me (which I assume they will do), how do I most successfully push for it? I am so sorry to be just "bugging" and that this is so long. You are the only people, though, that came to mind on feeling, desperately, that I need somebody who knows about these fears and illnesses, and gives a damn, which you have previously shown me quite robustly. I appreciate it so. It feels so terrible to be neglected. Thank you in advance, and SIGH! ~ Joana

This is wonderful. I'm now reading your story. So appreciated. Thank you. ~ joana OK, just finished your story. Wonderful. I will be checking out this site on which you have t published. You are an inspiration and your work is so, so valuable. Thank you. ❤️

Wow, congratulations! It's always great to see referrals to helpful places. (My cancer is different, but once I began reading your post I kept going. Inspirational!) Wishing the continuation of everything good! ~joana

Thank you so much for putting this together! I find it interesting -- I am a counselor for children and adults with cancer, and many of the things that you have advised are the same things I regularly write to patients and their families. Now, though, the shoe is (once again, SIGH) on the other foot, and this time, with major cancer #3, I need to truly learn to practice what I preach. I am an infamous "over-doer" and suffer from the common long-term patient's inclination to over-do when feeling slightly better. That, I believe will be my hardest and most important job post-surgery. Thank you for guiding me here; I needed to see this information aimed at ME, not the other way around this time. Much, much appreciated! I am happy to have found and joined you here. Thank you. I send warm greetings from the coastal forests of northern California. ❤️ ~ joana