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