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Orencia, After three months

I knew Orencia was working for me one week after my first infusion. Swelling in my hands, ankles and feet gradually disappeared until at three months I only have minor swelling in my hands. My daily dose of  RA(RD) pain has subsided to mostly feet pain, occasionally hand pain and spine pain. My improvement is amazing and  feels like a miracle.

It feels like a miracle because I had been in uncontrolled RA pain since the Fall of 2012. Now in the Fall of 2015, the pain is almost gone. Thanks to Orencia my RA fog is lifting. I have more energy. And I will have a lot more energy as I move more.

I am still on other medications for my RA(RD)*. I am also on Methotrexate injections. I take Plaquenil,  meloxicam, gabapentin.  My prednisone is 2/3 of original dose and decreasing.

I go to the infusion center once a month. Time is about one hour. Occasionally, I have what feels like a rebound effect. About a week after the infusion, I have a day or two of inflamed joints. Then it’s gone.  Then it’s good.

Orencia is expensive. My insurance co-pays maxed out so I have no more co-pays until the beginning of next year. I have had local financial assistance this year.  I do have an Advantage medicare  insurance program so am not eligible for financial assistance from drug assistance programs.

I had the expectation that this drug would work. I have no idea why except that nothing had worked up until  this medication. I am glad it works.

Hopefully, my experience will give you a little optimism. Eventually, you will find something that will work for you too.


*RA is rheumatoid arthritis; RD is rheumatoid disease and a preferred name.  RA or RD is a systemic disease, not to be confused by osteoarthritis which is a wear and tear joint disease.

Test Week

Since my Rheumatoid Arthritis and my two cancers were diagnosed in the same year, it is logical that  milestones occur the same way.  In one week I had  tests for my two cancers.

On Monday I had a Thyrogen shot in the butt. The medication  acts like TSH, a hormone  that  normally stimulates your thyroid. ( $1400 each without insurance, $135 each with). Tuesday I repeated Monday with another shot.

On Wednesday I went to nuclear med for a radioactive pill.  I am not radioactive. I feel like I am. I am also given two containers of MOM. The tech said it was a mild laxative. One tonight. One Thursday night. it wasn’t mild. I was also instructed to eat lightly.

On Thursday I went to Radiology Associates of NM for a diagnostic mammogram. I do love this place. Friendly people. Coffee. Special cute patient gowns.  I felt that I would be fine, but I had the vivid memories of when I was not. So I still worried. Lucky me!  There was no sign of cancer. A big relief.

Friday I had a body scan at 10 am.  Nothing to eat or drink for four hours.  The scan is done differently than other scanning devices. It is not a closed tube although the scanner is close to your body. There is not the claustrophobic feeling.

They also make changes with the equipment  by taking something off and adding something else. Finally done with this, I am sent to the lab for a critical thyroglobulin test. That done I have an ultrasound of my thyroid.

Finally, test week is done.

There is no thyroid cancer in my body. I am cancer free! It is an amazing feeling. A big relief. I feel like I can go on with my life. That I have a life.

Yes, I do have RA. From the initial thyroid radiation, I do have  salivary gland and dental complications.   I have a degenerating spine due in part to the medications I am on for the RA and the breast cancer. All these things can be managed. So all in all I do see myself as lucky.

During the last few years I have had the pleasure of meeting people who have a life long struggle with cancer. They have amazing perseverance through incredible difficulties. I am fortunate to end my journey with cancer for the time being.


Walking with Wisdom Woman

Walking with Wisdom Woman

After an MRI of my lumbar spine. Seeing the bad news. Being sent to yet another specialist. Spine and Pain Clinic. I was totally discouraged. In the same small office complex, I visit my rheumatologist, my neurologist, my oncologist, my palliative care nurse and now a pain doc. And this is just one of the office buildings I visit.

I was discouraged because I could see it as another proof that my body was falling apart. Am I on a steep slippery slope looking downwards? Scary.

I was scared. Then, as if by magic, my Irish-French Canadian genes kick in.

What to do?

A long time ago I had come to the conclusion that I needed to keep my primary focus on the activities of my life.  My writing. My family. My friends. My Hobbit House Projects.

I would not ignore my medical issues. I would care for them well. And then I would bring my focus back to the activities of my life. Sometimes I could do more and sometimes less. It worked for a while.

The next step in managing my situation was to realize that in spite of not feeling well, I still needed to carry on. My new norm is disability and a worsening prognosis. So I decided it was time to learn to live with it, put it in its place and keep going.

I am in a physical therapy program for my spine and am going to warm water arthritis classes for my RA. I have even started the long requested CSN blog for the board.

People I know continue to carry on with their projects. Their brain cancer, stage 4 breast cancer, kidney cancer doesn’t stop them. I see pain in their eyes sometimes. They continue on. They are role models for me.  They motivate me to carry on with my projects and my life. If they can do it, so can I.