This is the letter I sent to both my oncologists yesterday. I think it speaks for itself as to what's going on lately. Thankfully it solicited a response from both and I will meet with one today and the other Tuesday. Life is complicated right now and busier than normal. To those that know me, I'll apologize now for my flakiness. I'm having to cut back commitments that I had hoped to keep, in order to take care of what's necessary. I love you. Thank you for your prayers and support.
Dear [ALLOPATHIC ONCOLOGIST],
I just got off the phone with [MEDICAL ASSISTANT]. She delivered the same exact message I gave you last week. Not a single bit of new information and I told her as much. It's also the same exact message my husband forwarded to you on Monday. Today's call was the first response we've had since then and it is nothing we didn't already know. Might I remind you that they also said they are waiting for a response on November 28th? What is the likelyhood that we will actually get a response on Thanksgiving day?
In addition to all this, I've been waiting for 2 weeks to schedule with [INTEGRATIVE ONCOLOGIST] to see if she has any recommendations for what I can be doing right now. I also hope to find out if with the additional liver tumors and second line of treatment, perhaps I now qualify for the clinical trial in DC that she tried to get me in last spring.
It sure feels like I've fallen between the cracks again with both of my oncologists and I'm not really sure how to proceed. I am fully aware that I am not your only patient, but you are my only oncologist(s) and I am trying to do everything I can to beat this CANCER. Please try and understand where I am coming from.
I have been in continuous pain FROM CANCER for almost 2 years now. I spent 9 months back and forth between you and [INTEGRATIVE ONCOLOGIST] expressing my concerns for my increasing pain before I finally asked for the petscan that showed CANCER all over my bones, every place I was hurting. Why neither of you recommended the petscan sooner, I'll never know or understand but now that's completely beside the point. That petscan, and subsequent bone biopsy, only confirmed what I already knew. The CANCER was back and had spread. "Stage IV", "Metastatic breast cancer", whatever you want to call it, that is the reality I live with every day now.
I was on tamoxifen for 6 months before it was determined it wasn't working. That little suspicious spot on my liver had grown to 10. TEN! Thankfully we've seen a mostly good response with the ribociclib combo, all except for 2 liver tumors and a slew of horrific side effects.
Discovering this week that [RADIOLOGIST]'s office has been lying to me only further complicates this process and adds to my frustration with my care team.
What are my options here? Should I be waiting for this non-expedited appeal or is it as urgent as you told me? My CA 15-3 is on the rise again and it only makes sense that this is a direct result of the active tumors in my liver. I have to believe that because the alternative is that the CANCER has spread again. I don't even know if the tumor markers are an accurate measure of what's going on since we've seen mixed results in the past. Do we schedule the Dec petscan like you mentioned? I truly don't know. All I know right now is that I'm in pain, my body is a wreck, and I'm tired of this battle.
2 weeks ago, I spoke with the nurse navigator to see if she could point me in the direction of a patient advocate or ANYONE that can assist me through this process. She advised me to get an attorney. I have neither the time or money to pursue that avenue and find it absurd that that's my best option.
I am self employed. I already informed you that I am having to shut down my studio due to the effects of CANCER still active in my body. For 2 years I've been pushing through the pain and fatigue and I can't do it anymore. This was a heartbreaking decision but one I found to be necessary. My full time job is advocating for myself as a CANCER PATIENT.
Surely I'm your first patient to have a procedure denied coverage. What am I supposed to do now? This whole thing is incredibly stressful and frustrating.
Thank you for your time,
Tika Weeks
It's been 4 months since I last saw my integrative oncologist. As most of you know, I pay out of pocket to the tune of $600/hr to see her for her invaluable input to customize my care. This summer her rates went up and it has made it more difficult to see her regularly. If you feel so inclined to contribute to this expense and the ones that follow, a GoFundMe account was set up for this purpose by a couple dear friends.
Photo: Me and one of my very best girlfriends last week. She surprised me with a quick trip to LA to see her and rest a bit. So thankful for that time together ❤
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