Chemo Day

Round #4

(or Round #2b if you subscribe to E.'s theory)

Crown

What girl doesn't want a crown?  You know, a shiny gold crown fit for a queen?

I guess E. didn't get that memo when he dropped a crown into my hand last night at dinner.  Well, it was gold and it was a crown, but . . . it came off his tooth!!!

Looks like we'll be calling the dentist first thing in the morning.

What is it with this guy?  :)

S.

Just some snapshots

Stones

I'm not talking about the Rolling Stones.  And I'm not talking about gem stones.

Kidney stones.

That's what we think E. had/has.

When E. got home from the ball game last night, he was walking kind of "funny."  He explained that his back was sore . . . maybe because the seats were uncomfortable or maybe because he got in and out of the back of a truck or maybe because he pulled something.  Whatever the cause, the pain was getting worse.  By the time he tried to climb into bed, he was in agony.  

No matter what position his was in, the pain continued.  Laying didn't help.  Sitting didn't help.  Standing didn't help.  I offered some over-the-counter pain medication, which of course, the macho man refused.  Then, being the kind and compassionate sort I am, I fell asleep.

I awoke to find E. standing next to my side of the bed at 4:00 a.m.  Maybe it wouldn't be such a bad idea to take some medication after all.  Ya think?  He finally popped a pill . . . a very controversial, potent, scary IBUPROFEN.  Meanwhile, I was on the computer trying to figure out what was going on.  Was the pain related to the cancer?  Was it related to the chemotherapy?  Was it something totally new?

I strongly suggested that we take a trip to the emergency room.  E. assured me that he could make it until 8:00 a.m. when we could call the doctor's office.  I wasn't sure what the point of that would be as I assumed the doctor would recommend that we go to the emergency room anyways.  I'm not sure if E. was so miserable that he finally agreed or if he just wanted me to shut up, but we were headed to the E.R. by 4:45 a.m. (after making childcare arrangements at that fun hour, which is a story in itself).

The Ibuprofen seemed to take some of the edge off and by the time we got to triage, E. could actually hold a conversation without stopping for the pain.  Miraculously, after giving a urine sample, E. was "better."  The assumption is that he passed a kidney stone.  Aahhhh . . . big sigh of relief.

They sent us out the door with a prescription for Vicodin (which is sitting unfilled on the dining room table) and some discharge instructions.  Turns out, once you experience a kidney stone, you're susceptible to more kidney stones.  And, often times, where there is one kidney stone, there are more.

E. is now in bed.  Sleeping on and off, between the spasms of pain.  The pain has crept back up to a 6 on the pain scale, but according to him, is still not high enough to warrant pain medication.  

Feel free to stop by and beat some sense into him.

S.

Edited to add:  I just read this blog post to E. and he sheepishly went and took another Ibuprofen.  I guess he didn't want that butt-kickin.

Chemo break

Round #3 of chemo is done.  Or, alternatively (in E.'s eyes), Round #2a of chemo is done.  You see, E. went through two rounds of chemo under that first regimen (Cisplatin/5-FU) . . . but because they were the same drugs, E. considers those Round #1a and Round #1b.  Now, that he's under a different regimen (Oxaliplatin/Avastin/Taxotere/Xeloda), it is his perception that he just now beginning Round #2 . . . completing Round #2a and heading to Round #2b, then Round #2c and so forth.  Of course, the doctors don't see it that way, but let's just indulge E. for the time being and agree with him.  :)

E. once again tolerated the chemo better than expected.  He did experience a variety of side effects, but after many of the horror stories we heard, we really did expect many more difficulties.  He's now got a week off before he begins Round #2b (or, um, Round #4).  There is high probability that the side effects will get worse as treatment continues.  Hopefully this week will give him time to regain some strength and energy.  

S.

New Chemotherapy and potential side effects

For those of you interested, the new chemotherapy protocol consists of the following:

1.  Docetaxel/Taxotere (IV every two weeks)

2.  Oxaliplatin/Eloxatin (IV every two weeks)

3.  Bevacizumab/Avastin (IV every two weeks)

4.  Capecitabine/Xeloda (3 pills in the morning/3 pills in the evening for 7 days)

Because of the Xeloda given in pill form, a round of chemotherapy will take a full week to complete.  E. will then have a week off before he begins the next round.  He will have four rounds of chemotherapy using this new protocol before he has another check-up at MD Anderson to see how things are working.

As for side effects, they can vary by individual of course.  Some of the side effects are compounded when given in conjunction with multiple medications.  We are crossing our fingers that E. has minimal side effects and does as well as he did during his first two rounds of chemotherapy using the other protocol.

Side effects mentioned include:

Docetaxel/Taxotere:  low blood counts, hair loss, neuropathy (loss of feeling in hands and feet), mouth sores, diarrhea, nausea, hand-foot syndrome, muscle aches, fatigue, changes in nails

Oxaliplatin/Eloxatin:  neuropathy, nausea, low blood counts, diarrhea, sensitivity to cold

Bevacizumab/Avastin:  high blood-pressure, headaches, fatigue, low blood counts, diarrhea, kidney damage, risk of blood clots

Capecitabine/Xeloda:  hand-foot syndrome, diarrhea, mouth ulcers, nausea, low blood counts, sensitivity to sunlight, changes in nails, fatigue, dry skin

The biggest issue with nausea, diarrhea, and vomiting is the risk of dehydration.  It is important for E. to remain well hydrated.

Hand foot syndrome and dry skin may also be an issue since E. already has especially dry skin.  The symptoms of hand foot syndrome vary in severity but can be extreme . . . purple and red blistering, peeling, painful skin on the palms of his hands and the soles of his feet.  In an effort to keep his skin well moisturized, he is using some thick lotions and I'm making him slather it on heavy at night (holding it in by wearing moisturizing socks and gloves . . . you can imagine how well that goes over).

E.'s blood counts will be monitored weekly and hopefully none of the counts go too low, or there can be other complications if that happens.

One of the most frustrating side effects for E. last time were the mouth sores/ulcers.  The sores not only appeared in his mouth, but also in his throat.  It made eating difficult and also created an uncomfortable chalky film.  He is gargling with baking soda as well as a special mouthwash to hopefully keep the sores/ulcers to a minimum.

The doctors will be watching closely for neuropathy.  If E. begins to feel tingling or numbness in his hands and/or feet, chemotherapy may have to be discontinued or altered.  The sensitivity to cold has been an interesting side effect already.  We had read that E. should not eat or drink cold things, and that he should use gloves while removing things from the refrigerator!  It seemed a little bizarre to us at the time, but makes sense already.  E. can't even get the gallon of milk out of the fridge!  He describes it like this . . . touching cold makes his hands feel tingly . . . like they are asleep, but ten times worse . . . and the cold goes all the way to the bone.  Cold drinks are out.  Heck, even cool drinks are out.  Things have to be lukewarm or his throat reacts in the same extreme way.  (Even the baby wipes are too cold to touch, so E. just got out of changing the baby diapers too  . . . at least temporarily.  LOL)

And of course, there's the fatigue.  Chemotherapy makes E. tired.  In spite of the tiredness though, he's not sleeping great at night.  Which makes for more tiredness.  He dozes on and off throughout the day, but still tries to do way too much.  His independent streak is alive and well and he's reluctant to let others do much for him.  

Other than all that, E.'s attitude continues to be extraordinary.  He is ornery as all get out . . . just the way we like him.  :)

S.

More details

Now for more of the nitty-gritty.

As we explained before, E.'s new chemotherapy protocol consists of four different medications this time. Three are given via IV and one is taken orally via a pill. The doctor explained to us that the oral medication is typically denied by the insurance company, only to be eventually approved once everyone jumps through certain hoops. It seems the game is played like this . . . we take the prescription to the pharmacy . . . the pharmacy contacts the insurance company . . . the insurance company denies the prescription . . . the insurance company contacts the doctor . . . the doctor uses the denial code from the pharmacy and has to justify the necessity of the prescription . . . the insurance company gives its blessing and approval . . . and we finally get the prescription. I may have missed a few steps in there, but essentially, it's a big circle jerk. The end result though, after a week of going round in circles, was that we had the prescription in hand and chemotherapy could begin. Turns out, that particular prescription costs in excess of $2,000, which is probably why the insurance company balks at approving it.

Meanwhile, we received a call from the doctor's office on Monday afternoon informing us that E. had an appointment on Tuesday at the hospital to have a central port surgically installed. (We had specifically asked the week before if he was going to require a PICC line or a port and were repeatedly told it was not going to be necessary. Grrrr.) And an allegedly quick 30 minute procedure turned into an all-afternoon affair. You may remember that E. had a PICC line for his two previous rounds of chemotherapy . . . a long catheter inserted in a vein in his arm to make receiving IV's or drawing blood much easier. A port is a similar concept but in the chest rather in the arm. The "port" is a sealed chamber covered by a rubber disc that is surgically placed in a pocket under the skin on the chest. This chamber connects to a flexible tube that goes into a large vein in the neck. The tip of the tube rests in a large blood vessel in or near the heart. The port provides direct access to the bloodstream and can be used much the same way as the PICC, such as for drawing blood or infusing intravenous fluids and medications. The advantage of the port is that it is under the skin and so activities are not limited, including showering or swimming. If you feel the area on E.'s upper right chest, you can actually feel the triangular shape of the hard plastic port. If you run your fingers over the skin, you can feel three raised bumps arranged in a triangle. Hopefully the port will work as easily and as smoothly as it should. (This is a picture of the Power Port that is just like the one E. has, courtesy of Bard Access Systems.)

So, with the needed prescription in hand and the port in place, E. was ready to begin chemotherapy again.

S.

A Quickie

After nursing my old and feeble computer along for years, it has finally bit the dust. Unfortunately, no computer means no internet and no blog updates. Grrrr . . . it's as frustrating for me as it is for you. Hopefully I'll be able to remedy that situation soon.

Once I actually have some time to sit in front of a computer (keeping my fingers crossed that it will be in front of MY computer), I'll try to give a more detailed update. In the meantime, here is the quick summary . . .

* We met with E.'s local oncologist and provided the recommendations/instructions that we brought with us from MD Anderson.

* We jumped through insurance hoops to get E.'s chemo medications approved. This chemotherapy protocol consists of three IV drugs (given every two weeks) and one oral drug (taken 7 days on/7 days off). More about that, as well as the potentially awful side effects, later.

* E. had a central port installed in his chest. More about that later too.

* This round of chemotherapy begins tomorrow, Wednesday, July 15th. We'll spend the day at the hospital, similar to his previous chemotherapy sessions - where he'll be connected to an IV pole all day long. We'll say a prayer that each drip of the potent medicine finds it's mark and destroys the cancer, drip by drip, cell by cell. And since we're praying, we might as well throw in a few others too . . . continued strength, good blood counts and minimal side effects.

If you're feeling up to it, send an e-mail or a text message (I can access both via my phone). If you're in the area, pop your head in and share a quick joke or two. Friends and laughter makes this journey so much more bearable.

S.

E3

Full of smiles and laughs

Drooling up a storm

Gotta keep fighting

I've been sitting in front of this computer screen all morning. I'm having difficulty finding the right words. My fingers type out a few sentences, but nothing is coming out right. Type. Delete. Type. Delete. How do I convey all the emotions of it? How do I share our experiences so that others might understand? How do I explain the seriousness of it all without making it sound all gloom and doom? How do I express our determination and our hopes without minimizing what we are dealing with?

E. walks by and rolls his eyes at me, wondering what is possibly taking me so long. "Want me to do it?" he asks.

"There's more cancer. Gotta keep fighting." Done. All in E.'s words.

If you're like me though, that doesn't tell enough of the story. For those of you that want more, here it goes . . .

On Wednesday, we received a message that we had an appointment with the medical oncologist the following morning. It wasn't tough to figure out how the biopsy results came back since we were meeting with the oncologist and not the surgeon. While we knew this was a distinct possibility, it still came as a blow. It was a huge let-down, a major disappointment. All the possible 'what if' scenarios raced through our minds which can be a tad bit overwhelming as you might imagine.

By the time we met with the doctor though, we were ready to fight again. Ready to face the latest challenges head-on. Ready to do what needs to be done.

There is no beating around the bush with these doctors. They lay it out there. At the same time though, they are not discouraged or discouraging. Dr. A. showed us the results of E.'s latest PET/CT scan on the computer. The injected radioactive glucose is taken up by cancer cells (which are rapidly dividing cells and need energy for growth) and shows up as a yellow/gold color on the scan. Red = good; yellow = bad. The lymph node by his right clavicle glowed yellow like a beacon in the night. Why this didn't show up or was never seen on the PET/CT done in Reno we do not know. It was pretty tough to miss, even for two folks who had never even seen a PET before. There was also speckles of yellow in the radiated area of the originating tumor. AND yellow in the polyps in the stomach. All cancer.

The doctor explained that the big issue is that E. has already had chemotherapy and radiation, and he still has cancer. Specifically, he still has cancer where the radiation was given. Because the cancer survived the chemotherapy and radiation, it was described as a "tough" cancer. Technically, one would think, "Why can't you just remove the esophagus, the stomach and the cancerous lymph nodes?" Dr. A. explained . . . Because the cancer went to the shoulder region, it knows how to travel. We don't know if it is anywhere else, but we have to assume it is. If E. were to undergo this intensive surgery, it would take a long while for him to recover and during that recovery, the cancer could grow and spread. His weakened body wouldn't be able to fight off the cancer or handle the chemotherapy drugs. So, surgery could actually make things worse at this point.

At the recommendation of his team at MD Anderson, E. now faces a new chemotherapy protocol of four different drugs. We'll meet with the local oncologist in Reno and E. will hopefully be able to get all his treatment in Reno, where he can sleep in his own bed every night. E.'s then scheduled to go back to MD Anderson at the beginning of September for PET/CT scans to see if the selected treatment is working.

I guess E.'s words really did summarize it all . . . There's more cancer. Gotta keep fighting.

S.