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Oct 27, 2017 07:52AM
hi, I am still kicking after treatment 10 of 16, but have had a few setbacks that really knocked me down and it's been hard to cope with it all.
I had a bad reaction to Benadryl with my taxol treatment that I had to endure for 3 weeks because of the respiratory risk with the drug. During this time I picked up a cold and despite clearing 2 chest X-rays and not missing a single treatment but I bruised my ribs on my left side from coughing!
I was adamant before we started my treatments that we avoid as many narcotics as possible because I was concerned about side effects and dependence being much greater for me living with ptsd during this health crisis.
After every alternative failed, I had to use narco 5 mg and 325 acetaminophen to maintain self care. After about a week the pain level continues to get worse and the narco does nothing to improve my quality of life at all now.
I have found that sea salt baths are most helpful and aromatherapy helps me stay calm as I pray for help and patience to make it through my endless days of therapy.
My therapist is very concerned that the recent opioid crisis is greatly changing how cancer pain is being handled and treated by doctors.
Having a ptsd diagnosis to start off my stage 3 breast cancer left me trusting on blind faith that all my hard work for years of documented therapy and medical records to confirm my repeated denial of narcotics for other medical options would be taken seriously and I would not be denied pain relief if I said it was too much to handle with any other alternative.
Last week I was, and with tears in my mothers eyes we sat together bewildered at the response we got after I was cleared for treatment. If my blood tests still look as good as they tell us, how can I be falling apart physically and emotionally this severe?
I am reporting my side effects and clearly showing my entire prescription history of every dose and duration to every specialty team I work with and I cannot help but to feel punished for being transparent and asking for help with severe breakthrough pain.
I have never displayed any drug seeking behavior despite multiple surgeries and trauma injuries in my medical history, and I was left feeling like a junky begging for relief because every last non narcotic option had been tried and failed to control my pain so I could even care for myself.
I felt ashamed that I could not just "suck it up" or that my ptsd was not even considered in the decision of how to address my pain and fear during treatment.
My therapist and I agree that I am not asking for anything unreasonable and the manner that my request was handled brings to sharp focus the need for sensitivity training in the medical community for mental health rights and patients with combined chronic diagnosis having treatments that disrupt prior mental health treatments already being used at the time of additional diagnosis to be treated for the entire prognosis simultaneously.
This issue is very personal for me, I am a very strong advocate for mental health and very dedicated to making this an opportunity to start some important discussions about the critical issue of how to handle being put in severe pain after being told you cannot have relief provided by the very doctor that promised to protect you from that breaking point.
After all the pain fear shame and guilt I have had to endure in my life, nothing broke me more than being made to feel that for being honest about what I am feeling and asking my doctor that I trusted to save my life for help and being denied without explanation or a word face to face.
It's very fortunate that I have a great therapist to help me through this crisis, but I felt this was important enough to share with you all so together we can change the standard of care for anyone who feels that they are not receiving the quality of care they deserve because of combined diagnosis.
I will try to stay strong and let you all know how surgery goes once I find the right team of doctors to use for my double mastectomy and reconstruction but after my first appointment went so awful I can hardly bring myself to think about that yet.
I don't have the strength to tell that tale now, and until I find any good from it to share I will keep it to myself and pray nobody ever has to be made to feel the way I was by being given incorrect information in such a manner by a doctor claiming to have had breast cancer
6/25/2017, IDC, Both breasts, Stage IIIC, ER+, HER2-
7/13/2017 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide), Doxil (doxorubicin), Methotrexate (Amethopterin, Mexate, Folex), Taxol (paclitaxel), Taxotere (docetaxel)
9/1/2017 AC + T (Taxol)
1/8/2018 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
1/8/2018 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left, Right; Reconstruction (left): Nipple reconstruction, Tissue expander placement; Reconstruction (right): Nipple reconstruction, Tissue expander placement