Agony

I think I must have forgotten to switch my pain patch.

I usually record the change in my yoman (diary), but I did not record anything on Monday, when I should have put on a new patch.

Last night, I had to take two Percocets, so that I could fall asleep, and today, I have taken two Percocets another two or three times.  I have lost count.

Meanwhile, I put on a new pain patch.  They take about 12 hours to "kick in."

I am in such excruciating pain. I just want to crawl out of my body!

I have so much to do today, for my kids, and I cannot do anything.  I hurt so much that my brain is fuzzy -- not drugged out, just overwhelmed by pain.  I just want to cry.  I need to escape from this pain. It is so debilitating!

I do not even feel like talking, and I always feel like talking!

I used to think I was so tough, but I have such a hard time tolerating pain.

I am not so tough.

I want my mommy.



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

With love and optimism,
RivkA

Missing Patch

Last Tuesday night, I had an awful night, waking up constantly from pain and finding it difficult to fall back asleep.  Early Wednesday morning, I woke up in excruciating pain.  It took over an hour, and several pain killers, until I managed to return to a fitful sleep.

I could barely move on Wednesday;  I felt so weak.

I had planned on spending the day doing fun things with my youngest daughter.  Instead, I spent the day in bed.  We were both very disappointed.

Thursday morning, I went to switch my pain patch (the patch slowly releases pain medication and needs to be switched every three days) and discovered that the 50 mg pain patch had fallen off.  Patches come in different sizes and strengths and I am currently wearing a 50 mg patch and a 12.5 mg patch.

No wonder I felt such pain!

I was not receiving most of my pain medication!

I put on the new patches and took a Percocet.

What a difference!

The patches are these small see-through stickers that you stick on your body (I put it in on my upper arm).  They look so benign, I wondered how much pain relief they actually provide.

Apparently, the effect of the pain relief patches is quite signifcant!
 


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

With love and optimism,
RivkA

Not So Fun and Relaxing

Today, my plan had been to go to my art class, get a massage, then come home and rest for a few hours before going out to speak to the women's Rosh Chodesh group in Elazar.

Instead, I spent the entire day at the hospital! 

To begin with, even though I am wearing THREE pain patches (12 mg each) and took a Percocet as soon as I woke up, the first thing the pain specialist in the oncology ward had me do was take two more Percocets.  It did shoot me into La-La-Land, but I could finally bare the pain! 

Then, after a brief consult and exam by my oncologist, he sent me for a CT.  After which he invited an amazing (and very nice) oncological orthopedic surgeon for an additional evaluation.  I need to do an MRI of my hip, to make sure I have no fracture, but that will wait for another day.

After I finally got out of the hospital, I had to go to the pharmacy for more pain meds, but they did not have the higher dose pain patches, that the doctor wants me to try.  My mom drove me to another pharmacy, but they did not have the patches either!  I was too tired to make another stop, so we just gave up and will go tomorrow.

By the time I got home, just a few minutes ago, I only had (have) an hour and a half to rest before leaving to speak this evening.

I am so damn tired!

I am counting on the fact that being around people energizes me.  So, I am not too concerned about my ability to give a good presentation.

That said, I am pretty sure I will crash afterwards.  Thankfully, I do not have anything planned for tomorrow, so I can rest.  Though I would really like to do something fun with my mom, who is leaving in two days. 

Being in all this pain has really cramped my style! 

I had planned on doing all these fun things with my mom.  In the end, I did not feel up to doing anything fun!  I am really hoping that we will manage to fit in at least a few fun things during the next two days!

I wanted today to be fun and relaxing.  It really was not!

--------------------------------------------------------------------------------
Anyway, if any of you women live in the Gush, you are certainly welcome to come here me speak this evening at the moadon in Elazar at 8:00 pm.

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

With love and optimism,
RivkA

Upping the Ante -- Moving On To Stronger Pain Meds (Medical Update)

Today, I began treatment with Herceptin again.  Since I have not received Herceptin in a long time, I needed to receive a "loading" dose.  Beforehand, I agreed to take hydrocortisone, to reduce the chances of an adverse reaction.  I did not really want to receive more steroids, but I also did not want to have to stop treatment in the middle.  Thankfully, I did not have an adverse reaction this time.

Also today, thanks to Moshe's gentle persistance, I chose to switch my method of pain management.  I got a patch which releases pain medication on a steady basis, over the course of three days. I am starting with the lowest dose patch, because I do not want to be all woozy.  I had to upgrade to something a bit stronger, becaue my previous regimen no longer kept the pain at bay.  I am hoping that this low dose is enough to do the trick.  One of the nurses warned me that I might experience some wooziness initially, but encouraged me to keep the patch on for several days, to give my body time to adjust and get over the wooziness.

So far, I am not feeling particularly woozy.  I still have some mild pain, but it really is mild.  We will see how I am feeling tomorrow.

My mom kept me company at the hospital today, which was really nice.  We ended up being at the hospital for a really long time (I arrived at 9:00 am and we did not get out until 4:30 pm). 

I would have liked to go home and rest, but God had other plans for me.  My son, who got himself a job working as a junior counselor this summer, had a field trip with his camp today.  He called me as soon as he learned that they would not be getting back in time for him to catch the bus to Tekoa for his horseback riding group.  I offered to take him by car today as well (I drove him and one of his friends yesterday, for their first lesson, so I could see the stables, meet the owner, and provide the boys with some sort of orientation so they would be able to come and go on their own).

Once I was driving in anyway, I decided to hang out in Tekoa with my friend, KAA, and just drive the boys home after their horseback riding session. I did not mind the wait, but I needed ice cream.  KAA and I went to the Makolet and I bought myself a tub of Ben & Jerry's Chunky Monkey ice cream. Despite the hot weather (and the steroids coursing through my system), I exhibited exemplary self control and did not eat the entire tub of ice cream.  I used a trick my father taught me and wrapped the left over ice cream in multiple layers of plastic bags.  I used a LOT of plastic bags and the ice cream was still frozen when I got home, almost an hour later (Thanks Dad!).

Tonight, Moshe, my mom, and I, watched several episodes of The Big Bang Theory. (Thanks, LWG!)  If you are a geeky type, or even just married to one, you have to watch this!  You will laugh!!



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

With love and optimism,
RivkA

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

Medical Update -- pain, markers, & mets

Remember the old days, when Mets was just a baseball team?

(not mine, of course. I'm a Yankees fan!)

Welcome to my world, where mets is slang for metastasis.

:-}

(my attempt at lightening things up a bit)


I feel a little bad that my posts have been a bit down lately. It's not so interesting to read, day after day, about pain, and feeling sad. It's not so great to be feeling that way either.

Oh well, welcome to my world. (staaaaam*, it's not that bad....)


So, here's what's new.

I asked my doctor how high the markers have to get before we really start to worry.

To my chagrin, he answered: "we're there already."

Between the increase in my markers and in my pain, he is concerned (and has been, for some time).

He's going to look over my CTs again.

From CT to CT, there is no apparent change in my bones. However, perhaps, over time, there might be some evidence of progression of disease. There do not appear to be new tumors. But it is possible that existing tumors have been growing very slowly. Because of the bone drug that I take, it is difficult to tell.

The problem is, if the cancer has been growing in my bones, how should this affect my treatment?

The cancer in my liver and lungs has responded WELL to treatment. As of now, there is no longer any evidence of disease in either my liver or lungs. That is amazing.

If we alter treatments, there are no guarantees.

Maybe another drug will be better for my bones. Maybe not. Maybe another drug will also be effective on my organs. Maybe not. There is no way of knowing in advance.

But we won't deal with this dilemma until we know the facts.

So, for now, I have to wait.

And, as we all know, the waiting is the hardest part. (dating myself with this link!)

"You take it on faith.

You take it to the heart.

The waiting is the hardest part."

(Tom Petty And The Heartbreakers - The Waiting, 1981)



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

With love and optimism,
RivkA

* stam (loosely translates as "just kidding")

ANGER

Just when I thought I was coming out of my slump....

I don't seem to be overwhelmingly sad these days.

Nope.

I seem to be angry.

I am easily agitated.

I have no patience.

I can be in a good mood one minute, and ready to scream the next.

I am volatile and unpredictable.

I am bitter.

I hate being in pain.

I hate having to take drugs.

I hate having cancer.



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

With love and optimism,
RivkA

Pain in the Neck

OK, I do not actually have pain in my neck, it's more like stiffness and discomfort, but "pain in the neck" is such a great blog title... (well, at least I amuse myself....)

Anyway.....

Lately, I've noticed that I do not turn my head so much.

I first noticed this new phenomena while driving.

I discovered that I was avoiding changing lanes, because that required me to turn around and look behind me.

A while later, I realized that if my kids were talking to me from behind, I would ignore them. When I started making an effort to pay attention, I had to ask them to move into my line of vision, because it was painful to turn around to face them.

I think the discomfort stems from two sources:
1. my neck
2. my back

Twisting puts stress on both parts of my body.

This came up today, when friends stopped by to visit in the afternoon.

I needed to put up my legs, because my ankles felt swollen and painful (not related to cancer; probably related to arthritis, but I don't know).

Anyway, by raising my feet, I ended up with my back to one of my guests.

Everyone had to move around (think: musical chairs), so that my guests and I could all be in comfortable eye contact.

It's not like it was such a big deal, but all these little things add up.

I wonder if anyone is doing the math...



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

With love and optimism,
RivkA

Pain in my back

Last night, it was difficult to fall asleep.

Sleep has always been one of my brachot (blessings). I am a deep sleeper. I fall asleep quickly (thanks to chronic exhaustion) and I stay asleep.

Even when my kids were babies, and sleeping right next to me, Moshe had to shake me awake, because their cries (right next to my ears) did not penetrate my slumber.

Even now, if you call me and I am asleep, it is as if the call never happened. I might say anything, but nothing I say is reliable. Most likely, I will not remember the converstation, or even that you called!

But I digress...

Recently, I have had a few nights with severe back pain. The pain has made it difficult to fall asleep.

If this happens more frequently, I will need to take stronger pain killers.

I am distressed at that thought, but that is the way it is.

I'd rather be cheery after a full night's sleep, than a "grumpy-head" because I could not fall asleep.



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

With love and optimism,
RivkA

Sha'are Zedek Marathon (10 Days and counting...)

Prologue:

Saturday, June 28: The Ear Pain begins

Saturday night: Began using Ear Drops (Desoren)

Sunday, June 29: Went to GP, began antibiotics (Augmentin/Amoxicillin)

Sunday, June 29 - Monday, June 30: Pain so bad, I stay in bed


The Sha'are Zedek Marathon Begins:

Tuesdays, July 1, 6:00 am -- 8:30 pm: Sha'are Zedek:
1. Emergency Room/ENT clinic (excruciating Ear PAIN!!)
2. Oncology Day Ward: meet doctor, open port, take blood tests
3. ENT clinic: consult with senior physician (new ear drops)
4. Oncology Day Ward: Chemo
5. CT: head, neck, chest, abdomen, pelvis

Wednesday, July 2: Bone Scan at SZ

Thursday, July 3: ENT clinic (follow up) at SZ: Come back Sunday

Friday, July 4 - Saturday, July 5: break for Shabbat (still in pain!)

Sunday, July 6: ENT clinic (follow up) at SZ: Come back Monday

Monday, July 7: ENT clinic (follow up) at SZ:
1. Hearing Test: hearing damage (some might be permanent)
2 Poke hole in ear drum (ouch! -- pain is less now)
3. Snake miniature camera up nose (yuch!)
4. Come back in two days (?אלא מה)

Tuesday, July 8: Oncology Day Ward at SZ: Chemo PLUS
X-Ray at SZ: head to toe (almost), part of bone drug study

Wednesday, July 9: ENT clinic at SZ: technical mix-up: the doctor I needed was not there; Come back tomorrow
(Then, off to Hadassah Har HaTzofim to meet a gyno-oncologist for another opinion about my markers -- I waited over two hours; but the doctor was very nice. He does not seem concerned. Still, I have to repeat some tests and come back in 6 weeks.)

Thursday, July 10: ENT clinic at SZ


Epilogue:

?????????



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

Ear Infection and Cancer -- What Fun!

The emergency room was quiet, when we arrived, around 6:00 in the morning.

During intake, the triage nurse brought me a Percocet. I don't know if the Percocet made the pain go away, but it certainly made me care less!

Percocet really spaces me out. (and I'm already pretty far out there...)

The ENT on duty peered into my ear with some really fancy equipment; then he said those infamous words: "keep taking the antibiotics and you should feel better in another day or two."

Not this time!

"I have been taking antibiotics for 48 hours, and the pain is WORSE." I said, in a strong voice, belied by the tears visibly welling in my eyes.

"The senior doctors will be in at 9:00," said the kind, young doctor sympathetically, "You can come back then for another opinion."

It was 7:00.

I had plenty of time to go to the oncology ward, open my port, and get my blood tests.

We went up to oncology.... apparently the ward opens at 7:30.

There were two chairs in the hallway, outside the locked doors. Moshe and I sat down. I closed my eyes. Between the two and a half hours of sleep and the Percocet, I could have fallen asleep standing up!

At 7:15 my oncologist came strolling down the hallway.

"What are you doing here?" he asked, shocked to find us at the hospital so early in the morning. "I'm glad I got here early," he continued, inviting us into his office.

We had a comprehensive visit. I left with referrals for a CT, a bone scan, and an MRI. My markers are creeping up (more on that another time) and we want to identify what, if anything, is changing.

Then I went to have my port opened -- I was the first one in line! (will wonders never cease!)

And then, back to the ENT.

The senior ENT diagnosed an outer ear infection, and prescribed a different set of ear drops. He disagreed with the younger doctor's evaluation that the infection was also in the inner ear, yet suggested that I continue taking the Augmentin (amoxicillin), since I had already started.

"This way, you are covered from all angles," summed up the young doctor. "Come back in two days."

Without further ado, I was dismissed (and discharged).

Alas, my day was far from over.... I returned to the chemo ward, where my day was just beginning!



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

With love and optimism,
RivkA

Chasing the Pain

When I remember, I take pain killers before I feel the pain. When I forget, my back reminds me. When I am tired, I forget more often.

It is truly amazing how much pain influences our daily lives. I have a fairly high tolerance for pain. That just means that I can manage without pain killers. But I have less patience and less energy.

As my friend SM, an oncology nurse, explained to me:
"Chasing pain" means that people wait too long to take medication and then it takes longer and higher doses to be effective. If you are able to anticipate the need (prior to increased activity or change in routine) and medicate before you find yourself in trouble, you avoid chasing the pain. It's one of those delicate balancing acts.

Recently, I have been waiting too long.

Yesterday my oncologist asked how many pain killers I take. I told him 6-8 a day. Usually 6.

If I stay on top of things, I take at least 6.

If I take less, it does not indicate that I am in less pain. It just means that I forgot and suffered in silence. (sometimes I am not so silent in my suffering)

My kids know where my pain killers are. I often have my kids bring me my pills, because I do not want to move.

I have boxes scattered all over the house. That way, if I am in pain, I don't have to walk far to get my pills. I have pills by my bedside, by my computer, in the medicine drawer, on the medicine drawer, and in my handbag. I even have a box in my overnight bag, so I don't go away by mistake without any pain medication.

When I take my pain medication on time, I am much more active. I feel great.

Since my activities are limited to begin with, it is important for me to be as active as possible.

This means that I have to remember to take my pain medication BEFORE my back starts hurting.

I have got to develop a system to remember!

Not surprisingly, when I am in the pool, my back pain goes away. I do not know if the pain goes away because I am having such a good time, or if the water alleviates the pressure. Probably both.

Yet another reason to live in the water!

(those childhood fantasies of becoming a mermaid never did quite fade away...)

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