Chemo Day -- Herception, Doxil, Blood & More

I knew today would be a bit crazy, I just did not realized how crazy it would get.

The day started out in a fairly benign way.  There was some crisis at the hospital, earlier this morning, so my meeting with the oncologist began an hour late.  But the meeting itself was fairly straightforward. We addressed my long list of questions, scheduled a bunch of tests, and had a physical exam.

During the meeting, one of the nurses came in and hooked me up to the Herceptin.  And so the day began....

On my way to relax in the day room, Moshe approached me in a panic.

"They can't find it," he told me, with a worried look on his face.

The insurance company, which provides the actual Doxil for me, had called yesterday to inform Moshe that the Doxil was at the hospital since Tuesday. 

Only, it turns out that they, in fact, had not delivered the Doxil on Tuesday, nor on Wedneday, nor today.

God bless my husband, he stressed out about the problem, but he fixed it all on his own, which was not quick or simple.  I did not have to worry about anything, because he took care of me.

I do not tell him often enough how much I value and appreciate the way he looks after me.  On the flip side, I am quick to comment when he falls short, which is just not a good attribute on my part.  I am working on changing this, but the change is slow.

Once everything fell into place, Moshe hurried off to work, much later than he expected.

To my great surprise and pleasure, LS, who had to do something that morning at the hospital, came to visit me and ended up spending the day with me.  The day ended up being much longer than I expected, and she helped me with all sorts of little details and necessary errands.  Moreover, she provided wonderful company, and made the time pass much more pleasantly.

Moshe had fixed the glitch so well, that I was able to start the Doxil as soon as I finished receiving the Herceptin.  In theory, I could have gotten out of the hospital at a decent hour. In practice, there is always someone who throws a wrench into the works... One of the nurses told me that my counts were low again and I would need to come in next week to receive another portion of blood.

I really did not want to come in next week.  I asked to get the blood today, but the nurse insisted there would not be enough time today.

Never someone to take "no" for an answer without trying to find a way around it, I asked (read: begged) one of the other nurses to help see if I could get the blood today.

As is, next week I have an MRI of my head on Tuesday, an MRI of my right hip on Wednesday (if I get approval from my health fund in time), and my bone drug on Thursday.  Three days at the hospital is enough for one week!

Also, though the promise that the blood will help with my energy level did not pan out the last time, I really hoped that this time the blood would help restore some of my energy,

With the help of this other nurse, and of my friend, LS, who ran around the hospital helping the process move along, we managed to get the blood in time.

The infusion finally finished around 4:15.

I walked out of the hospital at 4:30.

I had accomplished quite a bit. In addition to the chemo and the socializing, I mended two pairs of pants for Moshe, and a handbag for me.

I also drank two cups of pea soup, a cup and a half of iced coffee, at least a liter of water, downed several Percocets, and found a friend to pick me up and take me home.

Not bad, for a 7 ½ hour day at the hospital!

I was ready for a nap!

However, after being out all day, my youngest, who had been home, on her own, for several hours, needed some attention.  So, I kept her company while she ate.  To her chagrin, while I sat with her, I also helped eat most of her mango.... (she offered to share with me, but had not intended to share quite that much.)

After lunch, we sat on the couch and, in response to her lunchtime request, I told her the story of how Moshe and I got married. She knew most of the story, but wanted to hear it again.  I think she appreciated the story even more, this time around.

Afterwards, I headed towards my room, and my bed.  Somehow, I got distracted along the way, and got sidetracked sorting through school books.

Eventually, I could not stand on my feet any longer.  I headed off to bed.

I am beat!



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 -- Doxil, Weight Loss and Herceptin

Started Doxil today.

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

With love and optimism,
RivkA

Medical Update (Doxil + Herceptin)

Between trying to manage my health and trying to plan a simcha (celebration), we are all at our wits end!

We have had lengthy discussions with three oncologists regarding my upcoming treatment.

My main oncologist recommends Doxil.*

The oncologist with whom we had a phone consultation made several recommendations, all involving Herceptin.

And our semi-local "second opinion" oncologist (who is in the Tel Aviv area), with whom Moshe always insists we meet before beginning any new treatment, agreed that I should switch to Doxil + Herceptin. 

She also said that, according to the current (and new) laws, both should be covered by our health fund.

We are not finding the health fund so forthcoming.  We are challenging the health fun.  At the same time, we are applying to our supplemental insurance for coverage of the Doxil.  The supplemental insurance won't cover Herceptin, because I took that drug before I signed up for coverage.

Meanwhile, my markers are shooting through the roof, but we know there is progression, so no one is getting all excited about that.... except Moshe and me.  And I am so scared about what has been going on inside my body since my last tests showed progression. 

We just cannot play this waiting game.  So, we are looking into funding the first few treatments on our own (with help, of course).

Once we get approved for funding, we should be reimbursed.... ("should" being the operative word)

Meanwhile, I am in pain, and sometimes the pain can get quite serious.

Like now, when my hip hurts so much that I cannot sit, or lie, comfortably, and my thigh muscle is having some sort of electric spasm!

My head is exploding with all the things I have to do tomorrow!!!

Our daughter's Bat Mitzvah is THIS SHABBAT!!

She will be reading ALL of Parhsat Balak at our women's Tefillah group! 

I am so proud of her!!!



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

With love and optimism,
RivkA

* Doxil was developed in Israel, by Prof. Alberto (Avraham) Gabizon, who is currently the head of oncology at Sha'are Zedek.  (See # 69 and # 70 in this list of Gabizon's professional publications)

Medical Update -- Side Effects of Taxotere

This past Thursday, I got the Herceptin but no Taxotere, to give my GI (gastrointestinal) track a rest.

Next week, I will resume the Taxotere, but in a lower dose. Hopefully, the lower dose will resolve, or at least dramatically reduce, the GI upset (read: diarrhea).

The previous week, I took Loperamide (Imodium) almost daily to resolve the upset. It worked, but it would be better not to have any stomach upset. Apparently, in addition to the dangers of dehydration, there is some risk of infection associated with diarrhea.

I guess I expected this week to pass smoothly without the Taxotere. Unfortunately, this morning (day 3) I had an upset stomach again. I immediately took two Loperamide tablets.

I really feel rather sorry for myself about the upset stomach thing.

Isn't it funny the things that bother us?


Meanwhile, the neuropathy caused by the Taxol seems to have disappeared from my feet. I am not sure what is happening with my hands. My right hand feels ok, but my left hand feels sluggish. I cannot tell whether it is leftover neuropathy caused by the Taxol, or new neuropathy caused by the Taxotere. I think it is getting worse, which makes me think it is the latter.

With the Taxol, my fingers felt "pudgy." Now the whole hand just feels like it is not working right, like it is "slow" or "sleepy."

I think there is something wrong with my sense of touch.

In addition to the loss of dexterity, especially in my left hand, I have also lost strength in my hands (both of them). I still find it difficult to open bottles and often need to ask for help.


It took over two weeks for the cuts on my tongue to heal after I stopped the Taxol. The sensation has returned, though much milder. I drank lemonade and the acid did not make my tongue burn.


So far, none of these symptoms is enough to stop the Taxotere.


Meanwhile, I just submitted a request to the kupah (health fund) for a PET scan (PET CT). It has been six months since we last did a full scan to see what is going on inside my body.



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

With love and optimism,
RivkA

Only Because I Love You (i.e. why I posted instead of going to sleep)..... Medical Update: Taxotere (and Herceptin) -- The Next Chapter

I thought it would be simple.

I was wrong. Again.

But I am jumping ahead….

****WARNING: LONG POST****
(feel free to just skip straight to Part II)

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

PART I -- Herceptin

Because new drugs are usually given a bit slower than normal, the nurses were anxious about finishing the Herceptin early so that I could start the Taxoter as soon as possible. Now, having been around the chemo block one or two times already, I already figured this out on my own. So when D came in and suggested we up the rate of my IV drip to 130 (instead of 120), I immediately agreed.

A few minutes later, my oncologist came into the day room... to talk to me.

“What’s wrong?” I asked, since he does not usually pop in to chat.

With a very serious face, he told me how important it was to finish the Herceptin on time, otherwise I would have to come in another day for the Taxotere. He knows how much I dread coming in another day. Then he suggested that I follow D’s recommendations for how fast to administer the Herceptin.

Since I was doing that already, I saw no reason to argue.

After he left, I realized I neglected to mention that I already felt some mild chest pain, which is the reason I get Herceptin slowly in the first place.

I was a little nervous, but I figured I would mention the discomfort to D if/when she came in to up the rate. Since the Herceptin was almost finished, I suspected this might not even be an issue. I have already learned not to make a fuss out of something that might not even happen.

And, in fact, neither D nor anyone else suggested raising the rate in the few minutes that were left before the Herceptin finished, sometime between 12:30 and 1:00.

THAT was the easy part of the morning.

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

PART II -- Taxotere

I already knew that I would need to wear special “freezer” gloves and slippers during the Taxotere treatments, to prevent my fingernails and toenails from turning blue.

I was not prepared for how FREAKING COLD they would be!!! (…trying to keep my blog family friendly here….)

At first, the tip of one of my left fingers started tingling. I wondered if it was from:
1. neuropathy
2. Taxotere
3. the FREAKING cold gloves

Then the fingers on my right hand started burning.

I ruled out neuropathy, but I still was not sure which caused the burning sensation, the Taxotere or frostbite.

Finally, it was so painful, I called a nurse. The FREAKING gloves were FREEZING my fingers!

The nurse offered this simple advice: when my fingers get too cold, remove them from the gloves until they warm up.

She added another suggestion: only stick my fingertips in the gloves; keep the rest of my hands and fingers outside.

I asked if it was absolutely necessary to keep my fingers in the gloves. The nurse said that I had a choice: cold fingers or blue nails.

Now, I have never been particular about the way I look. I do not use make-up, I wear simple and comfortable clothes, and even now I walk around my house with my thinning hair out in the open. But to openly choose to have ugly blue fingernails was too much. I took a deep breath, held back my tears, and accepted that I would just have to learn to accept the freezer gloves.

It took TEN MINUTES to warm up my fingers enough to stick them back in the gloves!

My trials and tribulations were far from over.

A few minutes later, my chest started hurting. At least, I thought it did. I was not sure. I thought I felt pressure on my sternum. But maybe I was imagining it. Or maybe it was the same pressure I felt earlier from the Herceptin. I could not tell.

So, I waited.

A while later, I thought the pressure felt a little worse. But I still was not sure.

So, I waited.

Meanwhile, my chemo date valiantly tried to entertain me. Luckily, she is one of the most positive and good natured people I know, so she did a great job of distracting me.

Still, I felt the pressure getting stronger. And yet, maybe it was all in my head.

So, I waited some more.

Eventually, the pressure was downright uncomfortable.

However, I still was not sure whether the pressure was from:
1. the Herceptin
2. the Taxotere
3. my mind (perhaps stress related)

I did not want to make a fuss. (I know this is surprising for those who know me well, but I have long since discovered that I become rather weak-kneed when having to confront members of the medical community)

Finally, I could not take the pain!

I felt like an elephant was sitting on my sternum!

My wonderful chemo date told me I looked green. She kept reminding me to keep breathing. I had not even realized I was holding my breath (to try to alleviate the pain).

I called the nurse, who stopped the IV and went to consult my oncologist.

For the second time that day, my oncologist came to see me in the day ward. He asked me a few questions and turned around to go.

“Wait,” I called after him, “What’s the plan?”

“I am not sure;” he responded, “I think I want to do an Echo and check your heart.”

Not what I wanted to hear.

He decided on an EKG.

With time, the pain lessened. The EKG was normal. The oncologist determined I was good to go.

Chemo resumed.

So did the pressure in my chest.

This time I did not wait before telling the nurse. She slowed down the drip. I felt mild relief.

Periodically, different nurses came in to check on me. I answered them all the same: the pressure is unpleasant, but I can manage.

Meanwhile, I switched the freezer gloves and slippers at least twice, carefully making sure that I did not freeze my fingers off.

I cannot begin to tell you how relieved I was when the Taxotere finally finished.

This was NOT a fun chemo day.

Next time, I will know a bit more about what to expect. That should make it easier, even if I have the same symptoms (I sure hope I won’t).

I still feel pressure in my chest, but not so bad.

I have slight itching, but nothing too severe.

I am exhausted!

This stuff better work!!



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

With love and optimism,
RivkA

Medical Update -- Xeloda vs. Taxotere

I tried to bypass the trip to Tel Aviv.

I emailed the oncologist and received an answer from her. She recommends Xeloda and Herceptin.

Because Moshe wanted an uninfluenced opinion, I sent her the minimal amount of information necessary to form an independent opinion. But now I had more specific questions.

I emailed her again, but did not receive an answer. So I called her with several follow up questions.

She was in the middle of seeing patients, so she was not available for a lengthy discussion. I managed to ask about Taxotere, and she repeated her recommendation to switch to Xeloda.

I wanted to ask her more questions, but she did not have the time or the patience. I asked if there was another time that I could call her. She was noncommital.

That is the only thing that I do not like about this doctor. The only way to consult with her is to come in person. It seems to me that we should be able to have a short phone consultation for relatively simple questions or, at least, a short correspondence via email.

It is clear that the only way we are going to receive satisfactory answers to all our (read: Moshe's) questions is to go in for a consult.

Moshe really wants to do this. I really do not want to. This is so ironic. I am going for him, and he is going for me.

Either way, we are both going to Tel Aviv tonight.

All I want to do is sleep. I forced myself to stay awake to call the oncologist when the secretaries said to call. (Then I had to argue with the secretary until she put me through, and then the doctor did not even really have time to talk with me!)

Now I can't sleep because I have to get ready to go see the doctor, because she did not have time to answer my questions over the phone, and she would not commit to talking with me later.

Oh, yeah, and did I mention that we had an appointment for 8:30 pm, but they moved us up to 7:30, which is NOT a good time for us?!?! (I hope I can sleep in the car!)

I am really trying to stay focussed on how important this is to Moshe.

I wish my two doctors would just talk directly with each other.

I am really inclined to take the Taxotere, for all the reasons I wrote in my previous post.

Moshe asked that I do not decide anything until I speak with the other oncologist. I am trying, but it is difficult.

Now, in addition to not wanting to spend the time or money getting this second opinion, I am worried that it will cause even more strife if Moshe and I do not agree on the next course of treatment.

...as if I did not already have enough stress in my life!

I HATE having cancer!



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

With love and optimism,
RivkA

Medical Update -- Doctor's Recommendations & Second Opinions

My oncologist recommending continuing with the Herceptin and switching from Taxol to Taxotere (rather than Xeloda) for two main reasons:

1. Taxol and Taxotere are both taxanes. Since Taxol was effective, it is reasonable to expect Taxotere to have similar results. Stick with what works.


2. Save Xeloda for when there is progression. Then we can use Xeloda in combination with Tykerb. Studies show those to be an effective combination.

This all makes a lot of sense to me.

Moshe wants a second opinion.

We have consulted several times with one of Israel's top oncologists, who specializes in breast cancer. Unfortunately, she is located in Tel Aviv and we can only see her privately.

I do not expect her to disagree with my oncologist. Even if she might suggest a different chemotherapy, I doubt she would advise against Taxotere. Taxotere makes so much sense as the next course of treatment.

I have been so tired since Pesach. I really do not want to schlep (drag myself) to Tel Aviv, not to mention shell out all that money. Each consultation with this oncologist costs 1,100 NIS! (I get half back from the kupah (health fund), but it is still a sizable chunk of money)

For his part, my oncologist is completely backing up my husband. Though he does not think a second opinion is necessary, he does think it is completely reasonable.

My doctor constantly emphasizes that "this is a couple's disease." He maintains that it would be wrong for me to have the attitude that "this is my body" and do just what I want. It is important that Moshe also feel comfortable and confident that we are doing the best we can to treat this disease.

Over the last few days, Moshe has read many articles about these drugs, and he has many questions. Not only is he interested in Taxotere vs. Xeloda, he is also interested in the combination of Taxotere and Xeloda. (thanks to A for sending us several relevant links, including this article).

Moshe, God bless him, is taking this decision very seriously. He does not want to be at all casual about my life.

I am not being casual about my life. I just know what I want to do.



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

With love and optimism,
RivkA

Chemo Day -- Herceptin: YES, Taxol: NO

Apparently, a "little break" is one week.

I received Herceptin today, but no Taxol. My next Taxol treatment will be next Thursday.

I was a little nervous about skipping the treatment, but my oncologist was pretty insistent. When I pressed him about it, he offered to give it to me if I was willing to sign a waver, taking full responsibility for any possible complications. I politely declined, to which he responded "I thought that's what you'd say."

So, I will focus on kicking this cold, which is pretty much taking up all my energy and then some.

I felt a bit better this morning, but by the time I got home I was wiped. I went straight to bed and slept for three hours!

At least I got the Herceptin. (This dose was the free dose provided by Roche)

We still hope to make an evaluation before I am due for my next dose, in three weeks.



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

With love and optimism,
RivkA

Cancer vs. The Common Cold

It occurred to me that having a cold might affect my ability to receive chemo tomorrow.

I emailed my oncologist, who wrote back: "come and we will decide tomorrow--sounds like you will get a little break"

What does that mean?

Do I have the nurses open my port as usual?

I am scheduled to receive both Taxol and Herceptin. If "we" (and by "we," I mean "he") decide to postpone treatments, do we postpone both medications? By how long? A few days? A week? What is a "little break?" (To me, a "break" would be at least a month! We know that is not happening, as we have already established (here) that we can not postpone the Herceptin by more than a week)

Last week, my doctor told me that we would evaluate the efficacy of my treatments in the next two weeks. How does postponing treatment affect our ability to evaluate if the drugs are working?

All these questions, just because of a stupid cold, from which, we agreed last year (see here), cancer patients should be exempt!

It seems that when push comes to shove, the common cold trumps the cancer card!



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

With love and optimism,
RivkA

The Power of Appreciation

Last week, I was due to receive all three of my treatments on Hanukah: Herceptin, Taxol (plus four premedications), and Zomera/Denosumab. Though I let everyone know that I did not want to come for chemo two days running during Hanukkah, I knew that possibility existed.

When I found out that I also needed to do a full body X-ray (which is done every 25 weeks for the Zomera/Denosumab study and takes around 20-minutes) my hopes for one chemo day flickered, then waned.

But, it was Hanukah, after all.

My hope flickered again, then got stronger, as I noticed that everyone was doing their best to try and help me finish all my treatments in time.

In the end, I finished all of my treatments in one day!

When I got home and hugged my kids, I was overwhelmed by gratitude.

I wanted to do something to show my appreciation to the oncology staff.

I decided to make a "Certificate of Appreciation." It was a bit challenging for me to make it in Hebrew, especially since I wanted the wording to be an accurate reflection of how I felt. But I did it.

Then, I left it at home this Tuesday, when I went in for my next treatment (just Taxol).

I thought I would at least say thank you to the staff, but I got caught up in the details of the day and did not remember until I was finished and on my way out. I realized that I could not leave without expressing my thanks.

By this point, I know that things don't happen on their own in the chemo ward. There is so much that goes on "behind the scenes." The nurses work especially hard to make sure that we receive our treatments and the care that we need.

So I went back, and found the four nurses who helped me so much the week before. One by one, I told each nurse how much I appreciated the efforts that she made to ensure that I finished in one day.

Two of the nurses were clearly moved, much more than I expected. Their reaction made me realize how powerful appreciation can be.

I have been in chemotherapy for almost a year and a half now. Most of these nurses have been my health care providers and support team for the entire time. I was not always appreciative of their efforts or their bedside manner.

In the beginning, I was confused by often contradictory behavior. I could not understand why the same nurse could be so kind one moment and so impatient the next.

Over time, I learned to recognize when the nurses were busy, rushed or pulled in a thousand different directions. I learned to ask questions during the quieter moments, like when the nurse is opening my port (and only the two of us are in the room), or at the end of the day, when most of the patients have already left, and the ward is calmer and quieter.

I also learned that the nurses know all about us. They do their homework, they talk to the doctors, and they make sure that we get what we need, even when they are understaffed, overworked, and underpaid.

And they are a tremendous source of knowledge and support.

Most days, I just take it for granted that they will do what they need to do. But, last Tuesday, I could not help but notice that every one of them was really trying to accommodate my needs. I felt like I had an entire support staff taking care of me.

One of the nurses, when I thanked her, looked at me blankly at first. "For what?" she asked. When I told her, she laughed and said, "That's history; it's already forgotten." After all, they have done so much more since then.

"Well, I did not forget," I answered back, laughing along with her, "For me, it was a big deal."



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

With love and optimism,
RivkA

"Losing It" or "Do You Love Me Enough to Drive Me in the Morning?"

Today, for the second time since I started the new chemo regimen, I was scheduled to receive both Herceptin and Taxol and the bone drugs. The last two weeks, I only got Taxol, and I finished really late both times. I did not want to come twice to the hospital, like I did the first time I got both treatments (and I did not need to get the bone drugs then).

So I told everyone (my doctor, the nurses, the research staff) how important it was for me to get both treatments today, so that I would not have to come in a second day during Chanukah. My kids are home from school and I want the time with them!

Everyone helped. I can't begin to list all the people who went above and beyond the "call of duty" to make it work.

I arrived at 8:40 (early for me), and I finished chemo around 4:40. Most of the staff left by 3:00 (it is Chanukah, after all). Even the nurse who was on duty until the end was patient and pleasant.

I got home after 5:00 and I was exhausted! (Also still a little woozy from the antihistamine) I wanted to eat a bit, light candles and go to sleep. Ha!

My eldest daughter wanted my help; so I dropped everything to help her. What I thought would take just a few minutes of problem solving, revealed a much greater problem (which she had created during a "teenage moment" yesterday). Though I was still upset with her about that particular "teenage moment," I tried to help solve the current crises. However, in the middle, as I was asking for her help to solve her problem, she had another "teenage moment." I had already solved the major problem and was now working on the original, relatively minor, problem (she really wanted a ride in the morning, at 7:00).

At first, I handled myself well. I stopped what I was doing and calmly told her that she behaved inappropriately to me and I would no longer be helping her to solve this particular problem (it's not like there was no way for her to get where she needed to go; she could take a bus).

Had I stopped there, she would have been upset, but I would have done the right thing.

Unfortunately, my kids know how to "suck me in!" Within seconds, I was dealing with a whiny and demanding child.

That is when I lost it.

Boy, did I yell at her! All my frustrations about yesterday's incident, combined with today's incident, combined with the fact that I was exhausted and still taking care of her even when she deserved to learn her lesson the hard way, and I was just fed up with her attitude!

My friend, who was in the other room, heard me shouting and high tailed it out of there! Oops.
Well, now she knows I'm human, and yell at my kids sometimes. (I know it might be hard to believe, especially for all you perfect parents out there, but I can be pretty scary when I am a raging lunatic mom)

I tried to regain my composure and talk reasonably with my daughter, but everything that came out of her mouth just agitated me further! Finally, Moshe came out and sent her to her room.

Later, much later, he went in to talk with her.

Then she came out to talk with me.

We were both much calmer and had a really productive conversation. Every time my daughter slipped into "teenage mode," I miraculously managed to maintain my poise and refocus her attention on the main issues at hand.

When we finished, she went off to do the things she had to do. I promised her that when she was done, we could spend a few moments together.

When she came back, she was affectionate, but still a little irritating. Eventually, I got her to smile and even to laugh.

"Why won't you drive me in the morning?" She asked, for the umpteenth time, looking up at me with her puppy eyes.

"Because I do not love you enough," I answered, exasperated.

"Can you love me more," she implored.

"I already do," I answered, kissing her on her forehead.

Y: "A hundred times?"

Me: "A million times"

Y: "A googol?"

Me: "A googol of googols."

Y: "Enough to take me in the morning?"

Me: "No."

Y: "Can you love me more?"

Me: "Yes."

Y: "A lot more?"

Me: "To the moon and back!"

Y: "Enough to take me in the morning?"

Me: "No."


Suddenly Moshe's voice interrupted us: "Doesn't she have to get up in the morning?"

I looked at Y with "that look" that said "you are getting me in trouble with your Abba again!" Then I mouthed to her "get into bed" and called back to him: "she's already in bed."

"No I'm not" she called back, laughing, as she ran to her room.

Then she stopped, turned to me and asked “Will you sing to me?”

I was so tired. But, how could I say "no?" We had had two very bad fights in as many days, and now she was asking me to sing to her, something I have not done for a very long time.

I got up and accompanied her to her room. Then she crawled under the covers and stuck her hand out, for me to hold.

As I sang to her, she closed her eyes and smiled that peaceful, beautiful smiling of sleeping children.

When I finished, we hugged each other.

"I love you," she said quietly.

"I love you so much," I whispered back.

Then, just before I walked out the door, I paused. "No," I answered the unasked question one final time.

"What...?" she started to ask.... then.... "Oh....."

She giggled.

"I love you, mommy."

"I love you too sweetheart."





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

With love and optimism,
RivkA

Today's Outrageous News

So, I contacted Roche and it is true -- they provide the fourth bottle for free.

Not only that, but if I purchase the Herceptin from Roche, it costs 10,895 NIS per bottle (saving 326.85 NIS per bottle).

BUT, this afternoon, Roche called and told me that the head of the pharmacy department at Sha'are Zedek will not allow Roche to supply the Herceptin without charging an additional fee.

The Roche representative informed me that this has been the policy at Sha’are Zedek for years, leaving me with two options: either purchase the Herceptin at the higher rate, or switch hospitals (other hospitals do not impose an extra fee on patients who are purchasing their medication privately).

Switching hospitals is obviously not an option.

Before I take any further action, I want to verify this outrageous allegation. If true, it is absolutely immoral.

Meanwhile, I am in a lot of pain and seriously tired.

I think the new chemo is catching up to me...



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

With love and optimism,
RivkA

Crazy Days

So, I got the Herceptin today.

Even though my port was still open from yesterday, it was still a long day. I waited almost an hour for the Herceptin to arrive in the department, and then it took almost four hours to receive the dose. When I tried a faster drip, I had chest pains, so I had to slow it down. (I wanted to see if I could take the drip faster, so I would not have to come in twice on Hanukkah -- which is the next time I am due for both Taxol and Herceptin)

Anyway, I was definitely more relaxed than I was yesterday!

Later in the day (after I got home), I heard that if you purchase the Herceptin directly from Roche Pharmaceuticals, they provide the fourth dose free. I hope to confirm this tomorrow.

Why is it so difficult to find out this information in advance???

I was so tired when I got home, but I could not rest. I had to feed my kids, then take my son to an appointment. Then, when we got back home, I had to feed my kids dinner and get them ready for bed.

Moshe was still at work, because he is putting together a file of my medical records in digital form.

My son went to bed early. When he realized how early it was, he wanted to get up. I suggested that maybe, if he was already reading in bed, he was tired and needed to rest. He said he wanted to make use of his time. I said, "that's a great idea, you can clean your room." He answered "I want to go on the computer." (surprise, surprise). I reminded him that he was not allowed on the computer at this time, and suggested, again, that he could use this time to clean his room. You never saw a kid pick up a book so fast!

I tucked in my son and... left for a Va'ad Horim (PTA) meeting at my daughter's high school. I felt a little more ba'inyanim (on top of things) at this meeting. (I know it's hard to imagine, but I was a little overwhelmed by the powerful presense of the other parents at the first meeting)

By the way, my late night talk with my daughter last night was mostly about how she LOVES her high school. She's been there for only a few months and already feels like she can do ANYTHING she wants! It is absolutely wonderful for me to see her so happy.

Even though I was tired, I had a really nice chat with one of the moms after the meeting.

I finally arrived at home at close to midnight. Moshe was (is) still working on my medical file. I made sure my kids were all tucked in and kissed them goodnight. They are so beautiful when they are sleeping!!

A few moments spent blogging and... I'm off to sleep!

I really do lead an insane lifestyle!



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

With love and optimism,
RivkA

Anonymous Angels

Tomorrow, I start Taxol.

I am anxious about the side affects. But there is no way to know how I will react.

I am trying to remain open-minded and relaxed. Easier said than done.

Nevertheless, what will be, will be.

I will also be receiving Herceptin. Tomorrow is the latest that I can continue taking Herceptin, without needing a "loading dose." My health fund, Maccabi, denied our initial request for coverage.

I am putting together an appeal, which we will send to the ombudsmen of Maccabi and the Health Ministry.

Meanwhile, some anonymous angels are taking care of me, and making sure that I get what I need.

My regular dose is 570 mg, and Herceptin comes in 440 mg bottles. So I need two bottles tomorrow. Leftover Herceptin can be used for up to 4 weeks. So, in three weeks, I will need only one more bottle. Essentially, I need 3 bottles, for every 2 treatments. Each bottle costs 11,221.85 NIS (approx $2,805). (Herceptin costs even more at this government approved pharmacy, which sells drugs that are not covered by the health funds)

Several years ago, when I had the opportunity to purchase private insurance covering medications, I decided to forego that added expense. After all, I thought, how expensive can medications be?

Little did I know....



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

With love and optimism,
RivkA

Know Anyone High Up in Maccabi?

My health fund (Maccabi) denied me coverage of the Herceptin.

Before we go any further (and before anyone suggests we try to pay for it ourselves, or with donations), Herceptin costs 170,000 NIS per year.

The fund claims that
1. the "progression of disease" shows that the Herceptin stopped working, and
2. I am no different from all the other patients in my situation

However, there are two senior oncologists whose clinical experience leads them to believe that the Herceptin is still a valuable component of my treatment, and there is a research study going on right now to prove just that. Not to mention, most other patients in my situation are eligible to participate in this study, providing them with a means of receiving treatment, where I have none.

So, tomorrow I will start writing letters....

Meanwhile, anyone have any "protectzia"?



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

With love and optimism,
RivkA

Medical Update -- changing meds

Well, it is official. I am definitely switching chemos.

My markers have bounced back up and they are higher than ever.

I will definitely be getting Taxol.

If my health fund (Maccabi) approves, I will also continue with the Herceptin.

The health fund might deny coverage, due to lack of "evidence" that continuing Herceptin with a different chemo is effective. The research, that I cannot join, due to the cancer only being in my bones, is to prove what the doctors suspect, that it is beneficial to continue treating with Herceptin.

Unless, I get the Herceptin within the next 7 days, even if it is approved, I will have to get another "loading dose." That means another major chemo day from hell.....



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

With love and optimism,
RivkA

Uncertainty

So, if there is one thing that I am learning as a cancer patient, it is to recognize that I cannot control everything.

For the past 6 months, my markers have been steadily rising and my pain has been increasing.

After months of tests, scans, deliberations, and sending me for a second opinion, my oncologist has determined that this particular drug combo is no longer working.

I went in for chemo last Sunday, and my oncologist sent me home.

Well, not right away. After my blood test, we sat with my oncologist for about half an hour, discussing options. Both he and my second opinion oncologist (SOO) recommend staying with Herceptin and switching to Taxol. There is uncertainly about whether or not the health fund will approve the change (Herceptin is very expensive, and the health fund might insist a change of both treatments).

Xeloda, which is similar to Taxol, but less toxic, might be a "nicer" drug for me, but both doctors recommended "using up" Taxol first. My SOO suggested saving the Xeloda for use with the drug we will use when the Herceptin stops working. And my oncologist pointed out that I am only available for a particular study if I have already used Taxol. Moreover, the health fund will not approve the use of Xeloda before Taxol has been used.

My oncologist suggested I try to get into a study that would fund Herceptin and Taxol. But that study would make me ineligible to continue with the bone drug study, and I want to stay with the bone drug study.*

We also discussed the side effects of Taxol. I will probably lose my hair. (Want to know how I feel about my hair? Read this) I must admit, I have grown accustomed to having chemo and hair. I do not really want to start down that road now. I do not want to look sick. I will also probably suffer from neuropathy (a tingling of the fingers and toes, sometimes accompanied by a loss of dexterity). That really frightens me. And I might become very tired again. That does not excite me either. I took some deep breathes, and tried very hard to stay calm (read: not cry).

We walked out of his office with a letter to "send immediately" to my health fund, requesting the new chemo (Taxol).

I updated one of the nurses, with whom I am particularly friendly. She informed me that if you have to drop out of a study, sometimes the company will still pay for you to continue receiving the trial drugs. So that, if I need to enter a new study, perhaps I can still receive the bone drugs. (good to know). After she removed my "port" (the needle and tubing that connects my port to the IV), she suggested that I ask the secretary to fax the letter to my health fund, and wished me luck.

I faxed the letter, then my friend drove me home.

A few hours later, my oncologist called.

"Don't send the letter yet," he instructed.

"Too late," I told him, explaining that we had faxed the letter before we left the oncology ward.

"What's going on?" I asked, perplexed.

"Your marker are down," he answered, just as perplexed.

After rising around 20 points every month, for the past six months, my CA-125 marker suddenly dropped 54 points (from 170 to 116). My CEA marker also dropped (from 3.6 to 2.6).

"What does that mean?" I asked, searching for understanding.

"I don't know," he answered honestly, "I wanted some extra time to think."

So, we waited for the PET scan results, hoping they might shed some light on my situation.

He got the report yesterday (Sunday). There is nothing new on the PET scan, it only shows bone lesions. GOOD NEWS for me!! But not at all helpful in determining treatment (though now I am ineligible for that new study, since bone lesions are too difficult to measure, and no other tumors are evident at this time).

I went in on Sunday to test my markers again. No further news yet.

So, here I am, the night before chemo, and I do not know what chemo I might be getting or if I am getting chemo at all.



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

With love and optimism,
RivkA

*I am either getting Zomera or a new drug called Denosumab. Participating in the trial is a win-win for me. The Zomera is the next generation drug of its kind, and is not covered by the health funds. And the Denosumab is a new drug which is not even available on the market. So, either way, I'm getting a better drug than I would have gotten had I not been in the study.

Chemo Day

On Tuesday, Sept 22, I came late to chemo. My friend had a son, and the brit was that morning.

I called in advance, and both my doctor and the head nurse approved the late arrival.

We agreed that I would arrive by 11:00 am, and that I would call earlier in the morning, to remind them to prepare my prescription.

I forgot.

Well, I remembered at 7:30 (too early to call), and forgot at 9:00 (the right time to call).

It happens.

So, they ordered my prescription when I arrived, at a quarter to 11:00.

The delay might not have made a difference. That day, there were several prescriptions which were delayed for unknown reasons.

Unfortunately for me, the delay would have significant repurcussions. I was scheduled to get all three drugs that day: Herceptin, Navalbine, and Zomera/Denosumab.

I was also scheduled to get a full-body x-ray for the bone drug study, but that was not such a big deal. I was able to get the x-ray while I was hooked up to the Herceptin IV.

The Herceptin took a long time. If the drip is too fast, I have an allergic reaction (pain in my chest, as if someone is squeezing my sternum).

At 3:30, one of the nurses informed that if I did not finish by 4:00, I would have to return the following day, for the remainder of my treatments.

On several occasions, over the past few months, I finished receiving my treatments around 5:00 pm. So I did not understand why she insisted I return, when I would be finished by 4:15 or 4:30.

The doctor on duty approached me, and explained (rather harshly) that it was her responsibility to be there while patients received their treatments, and she had to leave by 4:00 (since she had a clinic across town).

I was quite taken aback by the hostile way she spoke to me.

Though I was not the only patient still receiving treatment, she scolded me, saying "because of you, I cannot leave, and all the patients at my clinic will be treated late!"

I understood her time constraints, and appreciated the fact that she did not want to keep her patients waiting.

Still, she could have said "I understand that it is disappointing, and inconvenient. I am sorry, but there really is no other choice."

She was completely insensitive and unsympathetic.

The nurse on duty saw that I was distressed, and offered to leave my port open, so that I could come to the hospital in the morning, get hooked up right away, and finish quickly.

I appreciated her attentiveness and consideration.

The next day, I discovered that there were further consequences from the delay.

I would not be able to have my next treatment the following Sunday, before Rosh HaShanah, as originally planned.

I dreaded the thought of coming in on the Thursday after Rosh HaShanah. I knew the ward would be swamped after being closed for three days. Moreover, I would be anxious about finishing in time to teach swimming. And, I did not know if I would be able to teach, since I am extremely tired and worn out by the time I get home from chemo.

My doctor, and the head nurse, agreed that I could come in on Sunday (today) for the next treatment.

Well, if I thought the ward would be any less crowded, I was sorely mistaken!

This time, I was instructed to arrive late. I was only getting Navalbine, so it would not take that long.

Hah!

I arrived around 10:30 (instead of the usual 9:00).

It was a madhouse!

It took almost three hours for the pharmacy to deliver the drugs and for the nurses to hook me up. It usually takes one hour; on rare occasions, an hour and a half. But never THREE hours!

By the time I finished, I was completely finished!

I really wanted to go straight to sleep when I got home, but Moshe had to work late, and I had to be around for the kids.

It ended up being a late night for all sorts of reasons....

At 10:00 pm, my phone rang.

"Why are you up?" asked the caller.

I was not certain how to answer him, since I was exhausted and wondering the same thing myself!

My doctor, God bless him, was calling to check up on me.

He had sent me, via email, a referral for a bone scan, and he wanted to be certain I received it.

10:00 pm and he was still working!

Have I mentioned recently that I really appreciate my doctor?

Anyway, now, finally, at 11:30 pm, the house is quiet and I can go to bed.

I am nauseous and itchy, thanks to the chemo. Hopefully, that will pass.

Meanwhile, I am not looking forward to my next chemo day... next Sunday.

As one of the nurses said "days like today make one wonder if the chagim (holidays) are worth it!"



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

With love and optimism,
RivkA

Perspective

Even when I was a teenager, my face did not "break out."

Over the years, sun exposure has roughened my skin a bit. But, besides the freckles that I hated as a kid, my skin suited me just fine. Until now.

Every three weeks, before I get the Herceptin, I get a dose of hydrocortisone. Without the hydrocortisone, the Herceptin makes me itch... a lot. But the hydrocortisone makes my face break out... a lot.

So, when I met with my oncologist this past Tuesday, I asked if I could try skipping the hydrocortisone.

There was not much of a discussion. I am sensitive to the Herceptin, and the doctor thinks the hydrocortisone is absolutely necessary.

The fact that it makes my face break out is, relatively, insignificant. (to him)

As we were walking out of his office, my doctor joked about "writing on his blog": "I have a patient with metastatic breast cancer and she's worried about acne..."


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

With love and optimism,
RivkA