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Brain and spine MRI results and more ...

10/8/2016

12 Comments

 
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I managed to get a bit of rest.
PictureMy view from the back of the ambulance.
I went in to the clinic on Tuesday (as usual) and I received the results from my brain and spine MRIs.

1.  THE BRAIN MRI REFLECTS GOOD TREATMENT RESPONSE WITH A TINY RESIDUAL FOCUS LEFT BEHIND!!!!!  Everyone is very pleased with this result.

2.  The spine MRI reflects almost every other scan I've had done in the past two years.  There was nothing alarming about the report in that there was nothing new.  Lots of metastatic disease with complete bone marrow replacement in the lumbar and lower thoracic spine.

So why did it take so long to write about this?

I gained ten pounds in one week.  I had called in about this over the weekend, but the on-call doctor brushed my concerns off, saying that with cancer, it was to be expected.  When I got to the clinic on Tuesday, we found that he didn't leave any notes that I had called in.  The answering service had records, but nothing from the doctor himself.

I did not receive chemo due to the weight/water gain.  An emergency ultrasound was scheduled so that fluid could be drained.  Unfortunately, it was a rush and wait kind of day and by the time I had an ultrasound done, no one in interventional radiology was available to read it.  I was requested to come back on Wednesday.

On Wednesday, about halfway through my drive, I started to experience severe pain in my back.  I've felt the pain a couple of times before, but this was building in intensity.  I even cried while driving as the pain was quite bad.

I started the day with an appointment to get fluid drained from my abdomen.  With the ten pound weight gain, we expected a lot of fluid to be extracted, but believe it or not, there was none.  We were rather stunned.  I do have a lot of swelling in my legs, that probably explains a lot of things.

By the time I arrived at the infusion room, I was doubled over in pain.  It started in the back and moved to the front.  The back pain was more muscular and the front pain was more nerve related (a perfect horseshoe from front to back).  The nurse practitioner said that in all the years I've been going there that she's never seen me complain of pain and that she was sending me to the emergency room.  She moved me to a room with a bed, hoping I'd find relief laying down, but it wasn't to be so.  I tried to lay down on my side and an electrical bolt of nerve pain shot through my body so intensely that I screamed ... probably loud enough for the entire floor to hear me.  I was beside myself with pain.

I called Art and told him I would be unable to drive home.  While we were waiting for him to come up, they started giving me morphine every 30 minutes.  I responded well enough to sit upright, but I was still being sent to the ER for pain management and for a CT scan and MRI.  There was obviously something different happening in my body since Friday's scans.

A first for me ... an ambulance drove me to the ER.  This meant an immediate admittance and probably cut an hour off the wait time.

I got the CT scan, but with great difficulty as it was so painful to lay down.  The poor technician couldn't understand why I could remain flat for two minutes while we waiting for the nurse to come, but it was physically impossible for me to do so.  I had to stand beside the table until she got there, and then had to grit my teeth through the very fast CT scan.

Next up was the MRI.  A spine MRI takes an hour and I could not remain flat for that amount of time.  They kept giving me narcotics and they were not making a dent in the pain.  I either stood or walked the entire time I was waiting for the drugs to kick in.  When 9:00 rolled around, the decision was made to stop the drugs and admit me to the hospital.  I asked them if I could go home instead because I knew I'd possibly get more sleep at home than in a hospital.  They agreed, as long as I promised I would call in and come in the next day.

By the time I got home, all the drugs finally kicked in and I was able to sleep.  I actually slept about eight hours, which is always a good thing.  However, waking up was quite the painful ordeal.  This time, it was my legs that were in excruciating pain, with severe aches and with lots of buckling.  This is most likely due to all the walking and standing I did the day before.

A pain management plan had been put in place with my taking narcotics twice a day rather than just once.  That was already taking effect and my pain levels were much lower.

However, as promised, I called in and gave a report and the team requested that I come in right away. They were fearful of a fracture.  I wasn't  in the same pain I had the day before, so the trip was easier.  Art and I were immediately settled into a room and the MRI was ordered.  I was instantly started on some drugs and I fell asleep right away. I had the MRI and returned to the room to wait for the results.

The results are confusing.  There is no fracture and there is no spinal cord infringement.  There are no real answers, either.  In short, my spine is riddled with cancer and that cancer is triggering something resulting in extreme pain.

The current plan is to continue the pain management and go from there.  I can't drive for a while as I need to adjust to the heavy drugs.  I'm hoping that mid-week will be the magic point.  I have to wait until I can make it through a day without falling asleep without notice.

Thanks for the ongoing support and for being patient waiting for news.  It's not been an easy week at all, but hopefully, it will continue to improve.  My next appointments are on Tuesday.

On a side note ... I wrote an article that was published on Monday.  You can find it here: It's About Time MBC.


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I started to feel better, so the mischievous face came out for a while.
12 Comments

Where should my money go?

10/2/2016

3 Comments

 
Please consider these organizations as recipients for your donations.  While they are primarily located in the San Francisco/San Jose area, two of them are national research groups and one is a teaching hospital in San Francisco who specializes in metastatic breast cancer.  Dr. Hope Rugo is my treating oncologist and she is one of the leading oncologists in the US.  She is highly sought after and her research is often ground-breaking.
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3 Comments

Think before you pink

10/1/2016

0 Comments

 
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The pink month of October is upon us. THINK BEFORE YOU PINK!!! When you consider buying a product with that ubiquitous pink ribbon, ask yourself the following questions:

1. Does any money from this purchase go to support breast cancer programs? How much?

2. What organization will get the money? What will they do with the funds, and how do these programs turn the tide of the breast cancer epidemic?

3. Is there a “cap” on the amount the company will donate? Has this maximum donation already been met? Can you tell?

4. Does this purchase put you or someone you love at risk for exposure to toxins linked to breast cancer? What is the company doing to ensure that its products are not contributing to the breast cancer epidemic?

5. Is the product merely being sold to make money off of breast cancer? Anyone can slap a ribbon on an item and claim it's for "breast cancer awareness. Anyone can make a product pink and sell it in the name of "breast cancer." Don't fall for it. Do not buy a pink product just to "support" someone who has had or currently has breast cancer. Do not allow corporations to make money off the disease that is killing me.

If you cannot get the answers to these questions based on information on the product label, then walk away from it until you can find out.


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    God's Story

    _I believe we all have a story. This blog records my story and how I've lived with breast cancer both as a primary disease and a terminal disease.  I believe this is all a part of God's story for my life. This blog unapologetically includes all areas of my life: my faith, my family and my advocacy for change in the metastatic breast cancer world.

      

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