Medical Update -- Markers & Pain

My apologies for not providing this update sooner.

My markers are down!

Really down.

For months, my markers were on the rise. And they were climbing high! That, combined with a significant and steady increase in pain, was the main indicator that my previous chemo regimen was not working.

Almost as soon as I started on Taxol (in December), my markers started coming down.

About a month ago, they finally reentered the "normal" range.

The most recent tests indicated that they were still in the normal range, and even lower than the previous results.

This is great!

Regarding pain, things are a little less clear cut. At first, the Taxol seemed to have a substantial effect on my pain as well. For a brief period, I stopped taking pain killers regularly. The respite did not last long. Significantly, when I did need pain killers, I still needed to take both Optalgin and Algolysin.

These days, in addition to back and hip pain, I have pain in my lower rib cage, increased sensitivity in both shoulders, and pain in my neck.

Currently, I take pain medication 2-4 times a day. Occasionally, I need to augment the pain meds. Usually, half a Percocet is enough.

I still do not like taking drugs.



Please daven (or send happy, healing thoughts) for RivkA bat Teirtzel.

With love and optimism,
RivkA

Less Pain

For the first time in six month, I am taking less pain killers than I was a week ago.

I find myself going for hours at a time with no medication. That hasn't happened for the longest time.

As of a week ago, I was taking two Optalgins and two Algolysins every four hours, and I could barely wait for the next dose. I knew that it would not be much longer before I had to move up to the next level in the world of pain killers (from Algolysin to Percocet).

When I need to take pain killers, I still need two Optalgins and one Algolysin, but even that is less than I was taking a week ago.

I have had only two doses of Taxol, so this is certainly not a definitive indication that the chemo is working.

Still, it is encouraging.



Please daven (or send happy, healing thoughts) for RivkA bat Teirtzel.

With love and optimism,
RivkA

Medical Update -- CT, Bone Scan & My Annoying Ear

CT -- shows no signs of cancer spreading

Bone Scan -- ditto

MRI -- LONG story! (maybe I'll write about it tomorrow) Short version: still waiting for an earlier appointment.

Ear --
1. woke up this morning after my first good night's sleep in days; noticed a slight decrease in pain.
2.went to the dentist, to eliminate my teeth as a source of the pain. My teeth are fine.
3. went back to the ENT clinic at SZ for follow up. The doctors noted that there is less pain, less redness & less swelling. I stressed, again, that I am still in significant pain, not to mention the incessant ringing, the relentless pressure, and the pain in my jaw, which makes it painful to talk and eat (two of my most favorite activities!). The very sympathetic and kind doctors again said "those" words: "It takes time. Let's give it a few more days..."
4. I made another follow up appointment for next week.
5. last night I was able to go to sleep without the Percocet (I did take Cod Acamol), and I did not take either of those drugs this morning. (I did continue to suplement the Optalgin with Ibuprofen).
6. the pain is worse now (though not as bad as Sun/Mon). I will take a Percocet soon and go to sleep.


GOOD/HAPPY Stuff:

I did teach swimming today (with the doctor's permission) (I did not put my head in the water)

I went to this month's Laughter Workshop and my daughter, A, came with me!


Chodesh Tov!! ("A Good and Blessed Month")



Please daven (or send happy, healing thoughts) for RivkA bat Teirtzel.

With love and optimism,
RivkA

Too Much Pain, For Too Long

I am off to the emergency room to see an ENT (ear, nose & throat doctor).

I did not fall asleep until almost two in the morning (maybe later). By 4:30 in the morning, I was awake and unable to fall back asleep. The pain and the ringing is worse. The antibiotics are not working.

I've been on antibiotics for 48 hours. I've been taking a combination of Optalgin, Cod Acamol and Ibuprofen to compat the pain. None of these drugs has alleviated the pain.

I've been in constant and increasing pain for three days and nights.

I can't take it anymore!



Please daven (or send happy, healing thoughts) for RivkA bat Teirtzel.

With love and optimism,
RivkA

Say "YES" to Drugs

Why Optalgin (generic name: Dipyrone) is banned in the US and UK:

1. In rare cases, Optalgin causes life threatening illnesses, like aplastic anemia and agranulocytosis.
2. Risk is not related to dosage or duration of drug use.
3. Risk varies geographically.
4. Less people develop life threatening diseases in Israel than in other countries.

I decided to check out other options.

--------------------------------------------------------

There is a nurse in the oncology ward who specializes in pain management. I asked her about alternatives to Optalgin and narcotics.

The first thing she asked me was why I do not want to take narcotics.

What a strange question.

I grew up with the slogan: "Say NO to drugs!"

Now I'm being asked "Why are you saying no to drugs?"

Shouldn't the answer be obvious??

I guess not.

I told her:
1. I want to drive
2. I do not want to sleep
and...
3. I do not want to get addicted to drugs

I have taken opioids (opiates) before. After surgery, I was on a morphine drip and, later, I took Percocet (oxycodon combined with acetaminophen).

This stuff puts me to sleep!

I stopped taking the drugs as soon as I could bear the pain.

Truth be told, I do not want to take narcotics.

I also do not want to be in pain.

So I took a very small dose of Tramadex (generic name: Tamadol), in addition to Optalgin.

It made me nauseous.

Apparently, you need to get used to these things.

So I will try again... later.


Please daven (or send happy, healing thoughts) for RivkA bat Teirtzel.

With love and optimism,
RivkA

Drugs

It took a while, but I am finally listening.

My oncologist kept telling me to take drugs. But I did not take them.

It's not that I liked the pain. It's just that I did not want to take pain killers.

I was intimidated by Optalgin. (If it is banned in the US, I did not want to be taking it in Israel)

But the pain was making it difficult to fall asleep.

So I started taking Optalgin at night.

My doctor insisted that I also take at least one a day, to get rid of the pain.

So I took one, and the pain went away.

So I took another one.

Soon, I was taking one or two at a time, up to four times a day.

Once I entered the mindset that I should not be in pain, I no longer wanted to be in any pain.

I needed more Optalgin.

If I take two pills, four times a day, that is: 8 (pills a day) x 7 (days a week) x 4.5 (weeks in a month) -- i.e. 252 pills a month.

I went to the pharmacy with my prescription.

The pharmacist could not believe I wanted 12 boxes (21 pills/box) of Optalgin.

"Do you suffer from migraines?" The pharmacist politely inquired.

I smiled and replied "No, cancer."


Please daven (or send happy, healing thoughts) for RivkA bat Teirtzel.

With love and optimism,
RivkA