CT -- Medical Update

The CT report was short and to the point:  no change.

No change = stable = good news.



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

With love and optimism,
RivkA

It's Nice When It All Works Out -- friends, Xeloda, PET scans, & Disney

I need to do a PET scan, to see how I am doing.

All the imaging techniques (CT, MRI, PET) scan our bodies in different ways and provide different information.

With a PET, you have to be off chemo for at least two weeks before the scan, otherwise the chemo can influence the results, causing inaccuracies.

So, I am going to be off chemo when we go to Disney!!

Not only will that mean that I will have a bit more energy (I hope!), but I will also be able to eat more, at least by the end of our visit!

We will be spending our last Shabbat with very close friends, who also love food and are amazing cooks!  I am so looking forward to fabulous food!! Not to mention, really good company!

We were not planning on seeing anyone during this visit, besides my parents.  Our focus is 100% on spending quality family time together.

But, because we want to get back to Israel as soon as possible, we will be flying out of Orlando on a Friday and spending Shabbat in NJ.  This way, we can take a motza"sh (Saturday night) flight back home, and arrive on Sunday afternoon.  The kids will have plenty of time to sleep, so they can get back to school on Monday.

My friend was going to come visit me in Florida, until we decided against it. We were both disappointed that we would be "so close and, yet, so far away."  Then the flights, not only made a visit possible, but, made it necessary!

Things really seemed to be falling into place!

When I return to Israel, I will do an MRI of my head and a PET CT of my body.  I always get a bit anxious when I do tests.  I have learned, the hard way, that the results can surprise you, not necessarily in a good way.  Our last head MRI certainly surprised us, davka (on the contrary) in a very positive way.  So, you never know.  Still, until we get the "all clear," there is definitely a cloud of tension and anxiety.

But that is not where my head needs to be now.  (I mean, let's be honest.  My head is always in the clouds.... it just does not have to be in those clouds!)

I am going on vacation!!

We are going to have so much fun living in our fantasy world!!

I am so unbelievably psyched that it will be a chemo-free vacation!!



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

With love and optimism,
RivkA

CT & Ultrasound -- Medical Update

I have been so overwhelmed with the flu, that I realize I forgot to update you about the important stuff. (Actually, I did not realize it, until a million people kept asking me about the results!)

The CT did not reveal any new developments. The radiologist did see a "hint" of something on the liver, so we checked that out.

I did an ultrasound. The radiologist did not see anything worrisome.

So, for now, I seem to be doing well.

Recently, my pain seems to have gone down a bit, so that is also a good sign that the new chemo is working.

The oncologist wants to do a PET scan, eventually, but not now. Apparently, you have to be off chemo for at least 2-3 weeks before doing a PET. The oncologist does not want to stop treatment at this point.

I just started my fifth cycle of treatment with the Xeloda and Tykerb.



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

With love and optimism,
RivkA

CT -- Medical Update

On Sunday, I did a CT of my head, neck, chest, adbodment, and pelvis.

There is no written report yet, but it seems as if everything is ok -- meaning there is nothing new.

The CT is done without contrast, however, which means we do not see everything so clearly.

The radiologist did see a "hint of something" on my liver. My oncologist does not think it is something to worry about, but he is sending me for tests, just to be sure. I have to do an ultrasound this week.

Meanwhile, there are also tumors on my lungs. Apparently they have been there all along.

They are tiny, about the size of an "o" but they are there, and there are almost ten of them. I thought the tumors on my lungs were gone.

Apparently, the Navelbine (first chemo I took) shrunk them, but did not eliminate them.

My oncologist says that tumors shrinking to that size, and staying that size, is practically the same as if they are gone. It does not feel the same to me.

"Good as gone" is not "gone."

I want the tumors to be gone.

I hate cancer.



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

With love and optimism,
RivkA

Just Awful - Medical Update

Sometimes I worry that I am whitewashing the cancer experience.

After all, I don't want to post every day how tired I feel, how my stomach is upset, how much I hate taking pills/going to the hospital/doing tests, etc. Yet these are feelings I have all the time.

It takes constant effort to keep my mood up and my attitude positive. That is so much harder to do when I am sick!

Yesterday, things reached an all-time low.

Two weeks ago, my oncologist wanted me to do a CT (head, neck, chest, abdomen and pelvis), to get a full picture (more or less) of how I am doing now.

I put it off a week, because I did not want to lose family time during Succot. Then, on the day of the CT, I felt too sick (with the flu) to get out of bed. I hoped I would feel better on Sunday (yesterday), and be able to go then.

Well, Sunday morning I was still sick and feeling lousy, but I knew that the radiologists review the CTs on Monday morning, so if I did not want to lose another week; I needed to go.

I had to fast for this CT (no food, but I could drink water until an hour before the test), so I fasted all morning, in the hopes that I could get an appointment that day. It took a bit of negotiating, but the secretary, who knows me by now (me being a "frequent flyer," and all that), managed to get me an appointment for 2:30.

On the way to the hospital, I joked with my friend that the reason they don't let you drink for that last hour is so that you will be so thirsty when you get there that you won't mind drinking the disgusting Barium solution required for abdominal scans.

Seriously, between the heat wave and the Xeloda (which makes me thirty all the time), by the time I got to the hospital, I was so desperate to drink, I was actually grateful for the liquid they gave me. Not for long. By the third cup, the drink was no longer the least bit appealing, even with the added lemon-aide syrup. By the sixth cup, I did not know how I would manage to drink any more!

In the past, I just drank each cup as fast as I could. (You have to drink two cups at the start, then one cup every 5-10 minutes, until you are finished with the pitcher)

I did not understand why it seemed so difficult for some people to finish the solution (besides the disgusting taste, which did not seem to bother others as much as me).

Well, with my current lack of appetite, I just did not know how I would manage to squeeze more liquid into my tummy.

I approached one of the assistant secretaries, to ask if it was really necessary for me to finish the entire solution. She checked, and was told that I should take my time....

It took half an hour to drink another two cups. I felt bloated and and nauseas.

I was miserable.

I wanted to cry.

I felt really, really sorry for myself.

I asked again. I know that once, in the past, they called me in when I still had some drink left.

Thankfully, they told me that I did not have to finish the last two cups and I would be called in soon.

The CT took all of five minutes.

I could not wait to get out of there.

The ride home was awful. I prayed that I would get home before I needed to either throw up or go to the bathroom.

When I got home, I went straight to bed. (do not pass GO, do not collect $200)

I felt so awful, I could not even fall asleep.

Poor me.


----------------------------------------------------------------------------------
Just so you know (and don't worry), I'm better now (though I still have the flu).



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

With love and optimism,
RivkA

Medical Update

So, my doc does not see any change in my CT or in my bone scans, though the images of the tumors seem more "prominant."

He wants me to get a PET scan.

He also wants me to go for a second opinion.

He is perplexed (by the combo of clean liver and lungs, rising markers, prominant bone tumors, and increasing pain) -- he wants a "fresh" opinion, from someone from a different hospital.

It is totally cool that he has no ego about this thing, and is actually eager for a second opinion.

We'll see how quickly I can make all these appointments, and how much I have to "fight" with my kupah (health fund) to cover the PET scan.

Oh, the fun that awaits me!



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

With love and optimism,
RivkA

Medical Update -- Bone Scan, CT, & Chemo

And now for our weekly edition.....

(for those who just want to read the "bottom line", feel free to skip to the end)

Wednesday, 8:30: (accompanied by mom)
1. Arrived at SZ (Sha'are Zedek) for bone scan.

2. Got the shot that makes me glow, and waited two hours for the scan.

3. In a brilliant, last minute coup, (if I do say so myself) while waiting, I went for a follow up visit to the ENT -- I was supposed to go a month ago, but since my ear was no longer killing me, I had not found the time to get around to it... (missed that exciting saga? see here, here, here, here, here, here, here, here, here, and here).

4. I finished my follow up ENT visit (everything is fine), just in time to go for the scan.

5. Results of the scan would be available on Thursday.

6. I was wiped out! On our way out of the hospital, my mom wanted to stop by and say "hi" to her friend's son, TZ, who runs the ER. I was too tired.

7. We went home and I crashed!
(Just before I fell into bed, I told my mom "Hospitals are no place for healthy people!")


Thursday, 8:30:
1. Went to oncology to open my port and get a blood test.

2. My doctor whizzed by, and called out to me: "bone scan - no change."

3. Went down to get my CT.

4. Gave the secretary my referral, and happened to notice that the referral was only for a "chest/stomach/pelvis" CT. It was missing only one, very important word: "head." I had requested that we also CT my head, in case there was some cancer activity sneaking around my brain (which might explain the rising markers).

5. Went back up to oncology, in search of my oncologist, to add the missing link.

6. 45 minutes later, mission accomplished, I returned for the CT.

7. The secretary gave me a plastic "jerrycan" of DISGUSTING liquid to drink. I added two full cups of artificial juice concentrate (lots of sugar and food coloring, no nutritional value!). It did not help much.

8. I had to drink two cups to start, and then a cup every ten minutes. Much to the amusement of all present, when I drank, I held my nose and gulped down the liquid. Then I shivered in disgust. (it makes me shiver, just thinking about it). YUCK!

9. I learned, from M, the woman sitting next to me (whom I recognized from chemo), that there is a video camera focused on the CT waiting area. Apparently, she once dumped several cups of her drink in the garbage bin and planters in the waiting area. The CT staff showed her the video of her crime, asking her to refrain, in the future, from "watering the plants!"

10. Two hours later, I finished the drink and had the CT.

11. Went back to oncology, to find out if I would get chemo. The doctor did not know yet. It was 12:10 and I had been fasting all morning (beside that "CT special," Barium drink). I went off in search of food, knowing that as soon as I sat down to eat, I would get the call to come back for chemo.

12. The oncologist called, I would get chemo... today (for details of the call, see below)

13. Back up to oncology, with my food, to get chemo, and the bone drugs (oops! forgot about that! good thing I showed up for regular chemo!)

14. It was after 4:00 when we finally finished!

15. On our way out, we visited with TZ, who is a very interesting, and very nice person.

16. As we were leaving, my oncologist passed by. This month, in addition to his regular responsibilities, he is overseeing "intake" in the oncology ward (the regular ward, not the day ward). This makes him less available to his normal patients (well, I am not sure you could describe me as "normal," but you know what I mean). Despite his outward calm, I can see that this additional job is streching him to the limit.


Bottom Line:
* My oncologist told me that he wants to "sit" on those images for a few days. He wants to examine the images, bone by bone, which will take a while. And he wants to discuss my case in a staff meeting.

He is also considering sending the images for an outside opinion, from someone not connected to the hospital (it was unclear if he had someone specific in mind, though I know that he consults with an oncologist at Sloan Kettering).

Thursday evening, Moshe and I read the report from the bone scan. It does not look good to me. I will try to stay calm, until we talk with my oncologist on Tuesday.

A few weeks ago, I asked my oncologist where, exactly, is the cancer in my bones. He answered that it's all over my skeleton and that there is not enough time to go bone by bone.

Well, the bone scan report pretty much spelled it out for me:

"... in the shoulders, sternum, the entire length of the spinal column, both sides of the ribs, both sides of the pelvis, hip joints, and femurs."

Meanwhile, I will breathe slowly, and try not to focus on this stuff.



Shabbat Shalom!

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

With love and optimism,
RivkA

BAMM! BOOM! CRASH!

This post was supposed to be a really positive post, all about the first day of Chol HaMoed (visiting the Shomronim on Har Grizim, then going to Giv'ot Olam, an organic communal farm, between Yitzhar and Itamar), and the second day (at Tel Shilo).

Somewhere along the way, I was also going to mention how I seem to be out of my slump.

But, today, at Tel Shilo, right as we were walking around the area where most archeologists agree that the Mishkan stood, my oncologist called me up.

"Where are you?" he asked.

"I'm at Tel Shilo; where are you?" I responded, trying to be light-hearted.

"I'm at the office. When will you be back in Jerusalem?" he responded, no-nonsense all the way.

"Tonight. Why?" I finally realized this was not simply a friendly call.

"I want you to do a CT on Sunday." BAMM!

"Why?"

"Your markers are still rising...." BOOM!

I look around me, at the serene archaeological site. I want to hang up the phone, but I cannot. CRASH!

"I would really rather not come in on Sunday..." I say, thinking about our plans to spend the day with family and friends.

"We need to get the CT results before you receive your next treatment." He says, slowly, making sure I understand.

I do not understand. Well, I do, but I do not want to...

"I am not scheduled for chemo on Sunday," I remind him.

I suggest doing the CT on Wednesday. He agrees. I mention that I have to come in anyway, for a bone scan. He tells me that I can't schedule them for the same time. My bone scan is at 8:30/9:00. He suggests scheduling the CT for noon. Then I remember that I might need to fast for the CT (I do), and that I need to drink for the bone scan (I think). So we agree that I'll get the CT on Thursday, before chemo....

No pressure there. Can't get chemo until I get the CT. Might not even get chemo, depending on the results of the CT. Gotta go for the CT on the same morning as I am supposted to get chemo, if I even get it....

This is crazy.

Our group is moving on. I do not want to miss the explanations of the site. I get off the phone.

Moshe has questions for me.

I have no answers.

I am all rattled.

My cancer world just crashed down on my every day world -- you know, the one where I ignore the cancer, and just have fun with my family....

I pull myself together.

"Let's deal with this later," I suggest to my husband. He agrees, even though it is hard for both of us.

We gather the kids, and rejoin the group, as if nothing happened....



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

Medical Update -- CT results

My doctor sat up straight. He had "that look." My stomach dropped.

He chose his words carefully. There is a "minor level suspicion" that the situation with my bones is worse.

I thought we eliminated suspicion with the last CT of my bones.

I guess not.

This past Sunday, Isru Chag, instead of sleeping in and hanging out with my kids (or putting away my Pesach dishes), I woke up early for a MUGA scan (to make sure the Herceptin is not damaging my heart too much). After that, I had my regularly scheduled CT. (Have I mentioned how DISGUSTING I find the Barium drink for the CT??)

The tests are slightly stressful. (Hence the need to rest when I got home, even though I did "nothing" all morning) But I did not worry too much. I expected everything to be the same as last time. Stable.

Silly me.

Of course, everything is probably OK.

Even in the worst case, my prognosis is still the same (good). I would just have to change the companion drug (i.e. the chemo: Vinorelbine, a.k.a. Vanilla Bean). Hopefully, that will not be necessary.

I am taking a drug (either Zomera or Denosumab, not sure which, since I am in a double-blind study) to strengthen my bones. The drug creates dense bone tissue around the tumors, causing the borders to appear larger. So, while the results appear to be scelrosis, we want to make sure.

The good news is that my heart is just fine, thank-you-very-much. And my liver and lungs appear stable. Though, since I cannot use contrast (since I am now allergic to iodine), it is more difficult to examine the CT and compare results.... However, apparently there is no immediate concern regarding my organs.

So, I just need to do a Bone Scan (Hebrew: Mipui Atzamot).

It is no big deal. Just another test.


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

With love and optimism,
RivkA

Medical Update -- CT

CT results are good.

The tumors are stable.

It doesn't look like anything got smaller, but nothing got bigger either.


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

With love and optimism,
RivkA

Coffee Klatch (read: Chemo Klatch) -- Final Chapter

I went for a CT today.

I don't get the iodine injection, since I am now allergic to iodine. And, half-way through the disgusting barium drink, I was told that it wasn't necessary to drink any more. So, the process was much easier than in the past.

My mom kept me company, which was nice.

We finished so early, we decided to go visit our friend, in the oncology ward.

We went up to her room and she wasn't there.

Her bed was empty (without sheets, even) and there did not seem to be any personal effects.

I went to the nurse's desk. "Where's S?" I asked, uncertain if she had changed rooms or if the family had decided to take her home.

"Who are you?" asked the nurse.

"Friends," I answered.

"You'd better speak with her daughters," the nurse answered.

I asked another question, and the nurse repeated: "you should speak with her daughters."

I thought to myself, she must have gotten worse, so they decided to take her home.

On our way out, I met someone else who works there, and knows me as well.

She told me directly.

S passed away this morning, a few hours earlier.

It was so fast. Her diagnosis, her deterioration, her death.

Cancer is really a horrible disease.


I am different.

I have a different type of cancer.

My cancer is responding to treatment.

I am young.

I am strong.

I have a great attitude.

Blah, blah, blah....


Cancer Sucks.


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

With love and optimism,
RivkA