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

(cross posted from Coffee and Chemo)
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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!!

Medical Update -- Doxil, Weight Loss and Herceptin

(cross posted, with a bit of editing, from Coffee and Chemo)
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Started Doxil on Tuesday.

We have not received approval yet, but are optimistic that our supplemental insurance will cover the treatments.

Meanwhile, a few of our many angels covered the cost of today's treatment.

So we wrote a check to the hospital and I received my first treatment.

At one point, I felt a tightness in my chest and midsection.  The nurse slowed down the pace of the IV. The pain lessened, though I still felt a tightness in my chest, in the area of my sternum.

The pressure did not increase when the nurse raised the rate again, but I still feel the tightness in my chest now (almost 7 hours later).

My next dose of Doxil is in a month.

My oncologist advised me not to expect to feel a difference in pain until then.  I hope he is wrong.

Lately, I have had to take half a Percocet at night, in order to alleviate the pain enough for me to fall asleep.  I wake up in the morning, earlier than I want, from pain.  I do not want to take a whole pill, because I do not want to be a zombie in the morning!  I am back to taking pain killers (2 Optalgin & 2 Algolysin) as soon as I get up, and every four hours thereafter. 

My appetite has not yet returned fully.  I only have a few more kilos left to lose (4.7 to be exact).  When I get down to 70 kilos, I will have to do something to make sure that I do not lose too much weight.  I always said:  If I have to eat a high calorie diet, I will just eat ice cream all day.  I might need to stock up soon....

I also need to do some sort of exercise.  I know I do not move enough during the day.  I lost all this weight, yet I still feel like I have to drag myself to go anywhere.

Good news for today:  My health fund approved coverage of Herceptin!



Please pray, or send happy, healing thoughts, for RivkA bat (daughter of) Teirtzel.

With love and optimism,
RivkA

In the Middle of the Night.... (MRI Medical Update... Coming Soon)

(cross posted from Coffee and Chemo)
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Regular MRIs of the brain is somewhat controversial, since constant radiation exposure to the brain can actually cause cancer.  Unfortunately, there is no other way to monitor the cancer we already know is there.  So, I go for a brain MRI every 3-4 months, since I want to know what is going on in my head. (Yes, I know, I just opened the door for all those sarcastic comments from my dear friends and family members....)

Well, due to a technical error (i.e. either the fax never went through or Hadassah lost my papers), the MRI dept. did not schedule an appointment for me for this month.  I finally got through to the manager, who found me an "emergency" appointment for this past motz'ai Shabbat (Saturday night), at 11:30 pm.  I explained that I am on chemo, and the hour is really late for me, but that is all there was, unless I wanted to wait another two months.... NOT.  So, I took the appointment.

I planned to arrive early, but understood that if they did not take me until 11:30, I could easily be there until 1:00 in the morning.  And, if there were any emergencies, I could be there even later!

When we realized that Moshe would not be able to come with me, I again tried to move the appointment, to no avail.  Sunday (today) he attended a full day academic conference at Haifa University, about the Dead Sea Scrolls and the Second Temple Period.  He had to leave early in the morning and he needed to go to sleep early.  He felt bad about not being able to take me (he always takes me for my MRIs), but I pointed out that it did not make sense to lose a day of work and pay for a conference if he was going to sleep through the lectures!  Since I had encouraged him to attend the conference, I certainly was not going to be the cause of him missing it!  (For Moshe, attending these conferences is like letting a little kid loose in a candy shop... he thrives on this stuff!!)

Anyway, for all sorts of reasons, I did not get around to making alternate arrangements.  Saturday night came around and I realized I only had a tentative date, who, it turned out, was available, but preferred to be my "back up," since going out that night was not really great for her.

I have lots of late-night friends.  As I considered who to call, I realized that most of my fellow night-owls live outside of Jerusalem (anywhere between 20 minutes to 2 hours away), do not have cars, and would have no way of getting home afterwards.

So, I called one of my Jerusalem friends.  Jackpot!  She had rested on Shabbat, could stay out as late as necessary, had no plans for Sunday morning, and could pick me up and take me home!  To top it off, she is GREAT COMPANY!  I had so much fun hanging out with her.

But the evening had a few "hitches."  I got there early enough, and was able to take care of all the paperwork with no pressure.  When I went to sit down, I saw that there were no longer cushioned waiting chairs but, rather, hard, wooden chairs. I have cancer in my pelvic area and it is painful for me to sit on hard surfaces for more than a few minutes (especially now that I have less padding).  I wrote a note to the head of the department.

Meanwhile, the technician gave me one of the office chairs.

When the technician finally got around to checking me in, I discovered that my appointment was listed for 12:15 -- 45 minutes LATER than what I was told on the phone!!  I was furious, but there was nothing to do.  The manager does not work at that hour and the technician does not have the authority to shuffle patients around.  I wrote another letter (this one was not so nice).

I had brought three shirts to sew while I waited; they all needed buttons repaired or replaced.  I had just finished the last shirt, when the technician said they could take me next.  It was 12:00 am - midnight.

The doctor who inserted the IV needle was not the one I like, but also not the one I did not like.  She was new (for me).  When she inserted the needle, if hurt for just a few seconds, as she felt around for the vein, but then I felt fine (and I have no residual black and blue marks, so she really was good!).   She also took seriously my concerns about the risk of popping my vein.  When it was time to inject the contrast material, she made sure to inject it slowly.  It did not hurt at all.

Twenty minutes later, I was done.  I waited another 10 minute for the technicians to prepare a CT.  The written report would be sent to my oncologist.  I was free to go.

As we left, I started to feel a bit of anxiety creeping into my head.  Soon, I will not be able to pretend.  I will know how the tumors in my brain are responding to my current treatment.  Hopefully, the news will be good.  But until I read that report, I will not know.

I felt completely worn out.  My friend, God bless her, was wonderfully supportive.  I could have talked with her all night long.  But we both needed to sleep.  It was almost 2:00 am when she dropped me off at my home.

I stumbled into bed.  Moshe reached for my hand. 

Within moments, we both drifted off to sleep, our hands still clasped.



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

With love and optimism,
RivkA

Spreading the Word

Every time I speak, write, or talk about living with Stage IV cancer, it seems I am educating an entire public. This week, I got to go on TV to discuss the cover of my Spring issue, on which I posed nude, revealing my mastectomy scars. We've received LOTS of feedback on it.

Yesterday, I spoke at length to a woman who wants to get a copy to give her daughter, who is a young preteen, perfectly healthy, but struggles with excema scars and thinks she needs to lose weight. I say, let's bring on the REAL cover girls and start to break down the belief systems of glamour and celebrity that damage our senses of self-worth so horribly.

This woman had contacted me because of my interview on a local Denver morning show, in which I talk about balancing on that tightrope wire between life and death, and how it's an untenable place. We all walk it, sometimes pretending its as vast and flat as a sandy desert, other times wobbling precariously as grief, fear, family trauma and reality conspire to knock us off into oblivion. While I'm glad we're mouthy and outspoken, it grieves me, daily, that I've been chosen for such a shitty spokesperson detail.

I struggle, also, daily, with feeling attractive or even feminine. So I got my nose pierced the other day. I'm feeling much better now.

My meditation for this day: May we be given the grace to dwell in the presence of the moment and the insight to find those things that truly bring beauty and hope. I've got an almost-family of robins outside my living room window. For today, I will enjoy the promise of life.

If you'd like to watch what I said about living with cancer, it's here:
 

"Baldilocks"

(Cross posted from Coffee and Chemo -- original post: September 10, 2009)
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Last week, one of my children (Child A), wanted me to move a little faster.

"Come on 'Baldilocks!!'" nudged Child A, spontaneously creating this new appellation.

I might have gotten annoyed, but the nickname was so funny, I burst out laughing!

I immediate asked if I could post it. This was too good not to share.

Child A only agreed if I promised not to reveal said child's identity. Done.

A few days later, I shared this story with another of my children (Child B), who also burst out laughing.

Today, Child B called out to me, "bye Baldilocks!"


Child A overheard and immediately claimed ownership of the clever phrase, "Hey, I made that up!!"