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Chillin’ in Central Park

Not feeling so good these days. My body has taken a turn for the worse. And I’m not sure which direction to go next.

I am in pain pretty much around-the-clock. My neck. My shoulders. My back. My arm. My hand. An ongoing ache that prevents me from standing  too long, or walking too long, or doing any activity for too long. Instead, I need to sit. Preferably in a comfy chair with back support. And then there’s the shooting pains in my hand from the nerve damage that come and go at random times day and night.

At least we finally have consensus on the cause of my nerve pain. The neurologist said it is likely complex regional pain syndrome. A result of cancer and inflammation pressing on the nerves and blood vessels in the brachial plexus area of my left shoulder. Which means in order for it to get better I need to reduce the cancer (like I haven’t been trying to do that for the last 3 years!!).

In the meantime, I found an amazing physical therapist who is helping me keep the muscles moving and reminding my hand of what it is capable of doing. For the nerve pain I was given Cymbalta and for the other pains I was given Tramadol.  Unfortunately, I just read that these two drugs taken together can cause severe reactions including seizures. So I stopped the Cymbalta (which was making me drowsy 24/7 and decreasing my appetite – neither side effect something I need right now).  Plus, I’ve noticed that high doses of vitamin B seem to relieve even my most severe nerve pains – without side effects.

In terms of treatment decisions, I need to figure out my next steps quickly.  Because the cancer is HER2 positive it is really aggressive.  I can feel new tumors growing every week.  I have one remaining approved drug combination that I can take: Tykerb (a HER2 targeted drug similar to Herceptin and Pertuzamaub) along with the chemo drug Capecitabine (otherwise known as Xeloda).  Capecitabine was the one chemo drug my mom tried.  It likely contributed to her kidney failure – which was the beginning of the end for her.  I’m on the fence about taking these drugs but am realizing my options are quickly dwindling.

Otherwise, I continue to explore alternative treatments including high dose vitamin C infusions, hyperbaric oxygen chambers, cannabis oil, cancer vaccines, immunotherapy, and clinical trials among others.  And I continue to do acupuncture, reflexology, energy healing, and lymphatic massage to ease my symptoms.  To add insult to injury Hubby and I are spending upwards of $1000 each week on medical treatment.  And that’s with a good insurance plan.  Being sick is expensive!!!

Mentally I’m a bit of a hot mess.  Being in constant debilitating pain sucks.  Not being able to do what I used to be able to do is depressing.  Having only one functioning hand makes my every-day tasks frustrating and draining.  I spend a lot of time crying.  Sad that I can’t be the mom I want to be.  That I can’t live the life I want to live.  That my days are spent going from one medical appointment to another.  Trying not to focus on the pain and limitations.  Trying not to obsess over the fact that I may be dying.  Trying to accept that this is my life.  Clinging to the hope contained in messages from the Long Island Medium and other medical intuitives that tell me it is not my time yet.  Praying for divine intervention.  Praying for a miracle.

But I have to say that amidst all the pain and sadness I still manage to have some moments of joy and laughter and peace.  Last week my BFF Auntie ‘Cole came to town and we had 2 glorious days in NYC with my cousin J – shopping, people watching, laughing hysterically…  Followed by more quality girl time in Connecticut with my aunties and their girlfriends…  Hubby and I made it out to see a movie…  And the whole family made it to church last Sunday.

In the end, I know this is what matters most.  Finding moments of joy and happiness amongst the suffering.  It is possible.  But some days are easier than others.  So please send some prayers and positive energy my way.  I need it.  I’m at a crossroads.

Peace and love to all.  -T


Fun with my aunties

Fun with my aunties

Me and Auntie 'Cole

Me and Auntie ‘Cole

Me and Cousin J enjoying some of the family's home brew

Me and Cousin J enjoying some of the family’s home brew

31 Responses

  1. Holding you in my prayers as I type this, Terri. What you are going through is ghastly in so many ways — but the name Graceful Woman Warrior was not chosen for you in vain. About Marisa as daughter or you as mother *never* entertain the smallest doubt, the tiniest peradventure — whatever her actions or understanding of this all may be, no matter what *yours* may be at any particular moment or period of time — all that is transitory. In Eternity and in your hearts of hearts you are both all the magnificent aspects and attributes your best selves have demonstrated to anyone and everyone who cares to observe — again and again and again. A little passage from Mary Renault’s novel The Mask of Apollo has come to me just now: “I remember thinking, ‘This is just how one feels when acting badly.’ However, when I got to the lines where Achilles chooses glory before length of days, suddenly a burst of applause broke out and stopped the play.” Hear the applause that surrounds you even as you read this — LOVE, John

  2. I am praying that this is only a big bump in the road for you…I know too well how debilitating being in pain all the time can be,and how exhausted you must be feeling.I’m hoping that they can find you a chemo that will reduce the tumors and leave you with some space to feel like yourself so that you can be the you that you want to be…changes this large are REALLY hard to navigate.As always,I am sending much love and wishing you peace and strength.

  3. Dear T,
    you’ve got a place on my distant reiki healing, girl! it seems things have lifted for you periodically.., so hope you get a break from these awful symps soon! so hard to be in the thick of it.
    otherwise, i have a friend who got her hyperbaric treatments greatly reduced by having more of them. so it was almost the same price in the end. but they are in WA state where there may be more commonly other options. Then her husband found a used not-working one on ebay! does that sound weird or what?! it needed a compressor.., and they were able to go pick it up. and he is able to fix it. but who woulda thunk! they are in Olympia WA, or would likely share it w/ you;-) but if you want ot know more about their experience w/ the hyperbaric tx and machine, let me know, and i will make that happen.
    sending love from out here in cyberspace,
    susan-who-you-don’t-know, but i found you through elyn jacobs;-)

  4. Trying to find the words, but I’m rendered speechless. Your strength & courage astound me. Prayers, positive energy, love, hope, faith, direction, and answers… they all are heading your way! You are insanely brave – may your pain soon subside for you to be able to realize which road to take.

  5. 20 years ago, my wife tried the mega dose vitamin C treatment. Her oncologist (one of the best in the field) said it wouldn’t help, but that there was no reason not to try since it was harmless and did not interfere with the chemo. Anecdotal, totally, but the cancer that eventually took her was in check for 5 years until she stopped taking the vitamin C (she hated the side effect—gave her gas). Might be worth trying.

    My very best hopes and wishes to you.

  6. Sending it out so blazingly brightly for you! It’s been really horrible before and it got better. You can totally do it again. <3

  7. Teri, you are in my prayers. I hope they can get rid of the cancer and your pain! I was on Xeloda for almost a year and I did not have terrible side effects. Just the hand/foot syndrome, which requires a lot of lotion and cream! I know everyone is different, but hope it’s easy on you as it was for me.

  8. Terri, I am HER 2 neu + also and am being treated with T-DM1. On your treatment timeline, I don’t see this drug. The side-effects for me are practically non-existent. There is evidence that it works better than the regimen of Taxotere and Herceptin and may become first-line treatment in the future. I would definitely try it before I went to Xeloda and Tykerb. Please talk to your doctor about it.

  9. Oh my dear friend, do not despair. YOU HAVE KICKED THE SNOT out of cancer before, YOU CAN DO IT AGAIN. Do not let this s*#t get to you, you know that keeping up good spirits is half the battle! We are ALL here for you! We may not be living just down the street from you, but so many of us are sending you energies and positive thoughts daily- there is so much love for you, and just please know that whatever you need, whenever you need it- just ask! I love you so, please, KEEP ON KEEPIN’ ON!

  10. Dear Graceful Warrior Woman,
    Sending you our prayers and positive thoughts. P.S. read recently about the positive effects of Chi Kung on the immune system – just in case you have any interest in trying it!

  11. So happy to have finally met you. I am here to support you in any way I can. Will be retiring soon and would love to be available for appointments, hugs, and every kind of support I can possibly provide, any time. Love, Christa

  12. Graceful Woman Warrior

    I am one of your anonymous followers. I have read your blog from the very start. Don’t know why, but your story about life touched my heart. You have been in my daily prayers. You have shown how one can live well while overcoming great challenges. I pray that you will find a treatment that will bring healing and a return of your health. I pray that your daughter will find comfort and strength during this stressful time.

    Mike Grainger

  13. Oh, my dear… Holding you close in my heart and sending as much healing as I can manage! I understand too well what constant pain and debility does, but just when I was accepting my own end, my docs had a breakthrough and guarantee I’ll soon be much better. Hang in; I hope you will turn your own corner now, and have some more rollicking good times!

  14. Teri – I don’t know you. I stumbled upon your blog well over a year ago while I was reading blog entries for Bridget Mooney Spence. Somewhere along the line, your link showed up – I clicked on it and have been an avid follower ever since.
    I am sending you my prayers and know that I think of you often.

    You are the bravest woman I know.


  15. Dear Luannna-Terri, Heartfelt love & strength are being sent from Halifax. You are fighting a battle that noone should have to endure and you have fought it with such grace & determination that I pray this is just another bump in the road. I continue to send positive energy and hugs to you and your family.
    Margaret x

  16. Please check into the Bill Henderson protocol. I believe you can do it along with conventional treatment if that is what you are comfortable with. Bill’s protocol costs $200 a month. Also over 90% of breast cancer is related to either root canals, dental amalgams or cavitations. You want to see a biological dentist and not a regular dentist (this is very important!!!). Bill coaches people and if you are interested his website is beating-cancer-gently. Keeping you in my prayers.

  17. Saying lots of prayers for you and your family!!! You are an amazing woman with a tremendous amount of strength!!!! I think with your positive attitude(& some good drugs!), you will kick cancers ass!!!!

  18. I’ve been reading your blog for a while now but have never commented before. Please know that I will be sending good thoughts your way and know that you are an inspiration to so many. Praying for your peace and the peace of your family.

  19. Keeping you in my prayers. Joy, laughter, and sharing your daily trials are all very healing. May you continue to do so with your warrior heart. Hugs!

    • Dear Terri : I am praying for you. There is a man in my church that has the gift of healing . If you want to speak to him , email me and I will arrange for him to talk to you.Blessings and strength ,

  20. Terri, I’m sending you prayers and white healing light. You’re in my thoughts frequently, and I send prayers each time. You are a real inspiration to me! I truly admire your courage, determination and strength. Hang in there! The Long Island Medium just can’t be wrong!! Hugs!

  21. I am so moved by your strength. You are truly a woman warrior: fierce, courageous, honest, and indefatigable. I am pulling for you and praying for you. Hang in there fierce warrior. You are one spirit that cancer cannot beat.
    – Melissa, Erika’s sister

  22. Terri,
    I wish we could each take away a bit of your pain so that you wouldn’t have to bear it all on your own. Your grace, bravery, generosity and centeredness are a formidable force. The cancer must not know what hit it. Sending you love and light and reinforcement troops for your mission of healing.

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