The End of 2009

Many people are anxious to ring in the New Year and put 2009 behind them. “Out with the old, in with the new,” they say. Some people would like to go so far as to forget that this year ever even happened.

Have you heard about the industrial sized shredder placed in Times Square? People can literally shred their bitter memories of the past twelve months. Just toss in momentos from failed relationships, bad choices, missed opportunities ... slips of paper documenting lost employment, financial hardships, medical bills. The idea is all the “bad stuff” goes in the shredder and comes out an unrecognizable heap of trash that gets carted off, never to be seen again. Ram yesterday through a shredder and abracadabra, a fresh start.

The “trash” of our past cannot be made to magically disappear though. It is that very “trash” that shapes us, defines us, makes us who we are.

By some accounts, 2009 wasn’t a very good year for us. But what may not have been taken into consideration was that in 2009 . . .

• We experienced the birth of our incredible baby boy and have watched him in amazement every day since.
• We’ve worked on blending two wonderful families, a continual work in progress of evolving roles and relationships.
• We’ve been surrounded by the love and support of family and friends.
• We sought out and found top medical care, and the insurance allowed us to do so.
• We’ve met remarkably kind people along our many paths who have helped lighten our load.
• We’ve managed to find laughter no matter where we've gone or what we've done.
• We were reminded of what is important in life and to value and treasure those things.
• We were blessed in that we were able to face each challenge and celebrate each victory together. Having each other sometimes makes all the difference in the world.
• We heard the magical words “No Evidence of Disease.”

• While most would agree that the diagnosis of cancer isn’t a good thing (I would concur), without that diagnosis, treatment cannot begin. You can’t treat what you don’t know is there. E. is fighting and E. is winning. And that is nothing but good.

And I don't want any of that to disappear. I want to hold those memories tight . . . they are important to me and part of me. 2009 was, most definitely, monumental. It is with a little bit of sadness that I say goodbye to another year.

Hand in hand, side by side, we are ready for 2010. We know that no matter what happens, we’ll experience it together. We’re ready. It’s going to be another amazing year. I just know it.

Happy New Year!

S.

Cards

We are just about ready to send out our Christmas cards New Year's cards.

There are so many of you that we'd like to send a card to, but we are sorely lacking in the address department. Please drop us a quick e-mail or text with your address. We'd really appreciate it.

Come on . . . help us out. And maybe, just maybe, we can get these cards out before they become Martin Luther King Day cards.

I said maybe.

S.

Snowbaby

Not too thrilled.

Finally a smile.

Waving to his fans.

Live life!

We had our consultation with the surgeon at MD Anderson yesterday.

His first words when he walked into the room were "Looks like you're cancer free." Music to our ears!

He explained that when someone presents with high lymph node involvement (like that right shoulder lymph node of E.'s), surgery is usually never offered. He did say though that they do sometimes still consider surgery for younger otherwise healthy folks like E. What is required is a "period of stability," which means 3 to 6 months of clear scans and no cancer.

He explained that the biggest risk is for the cancer to come back somewhere else, like the liver, lungs, etc. That's where the worry lies. He stated that he was very impressed with how E. responded to the chemotherapy, which was very encouraging.

The plan is to return to Texas in three months. At that time, E. will undergo another Endoscopic Ultrasound as well as another PET/CT scan. If he is still all CLEAR, surgery may be offered!

I asked what E.'s job is for the next three months {anticipating an answer about eating healthy, gaining weight, increasing activity, getting in shape}. He looked at us with a big smile and said, "Live life. Your job is to live life." LOVE IT!

A good reminder for all of us. Our jobs are to LIVE LIFE. So friends . . . go! Go live. Go enjoy. Go make every day count.

Live life!

S.

Amazing

What an amazing day!

First of all, let me explain what happened with the child care situation. One of my best high school buddies (who lives in California) knew someone who once lived in Houston (but no longer does). Anyways, that person still had some connections in Houston, which is how the wonderful Miss Georgia became Peanut's babysitter. She drove AN HOUR to us, battled downtown parking, came to our hotel room, hung out with Peanut and even brought us holiday bread. And she didn't even know us! She's coming back on Wednesday too. Amazing.

Then, one of the above folks put E.'s name on some magical list. He suddenly became some sort of VIP at the hospital worthy of preferential treatment. The usual appointment process takes about 4 hours, the majority of that spent waiting (from the lobby to the waiting room to patient room). This time, we were in and out in 28 minutes. 28 minutes! Amazing.

And finally, E.'s PET scan results are GOOD. The PET was all clear! Even that pesky upper right clavicular lymph node was no longer seen. This means E. gets a well-deserved and much-desired three month break. While he's still "at risk," continuation of the same treatment at this point is not going to give him any advantage. In another three months, we'll return to MD Anderson for another PET and another Endoscopic Ultrasound. What happens at that point will depend on those results. It could mean more "wait and see," additional chemotherapy with the same protocol, new chemotherapy with different medications or possibly surgery. For now, E.'s job is to gain weight (high protein, low-fat and low-carb diet), increase activity and just get generally healthier. Amazing.

A totally amazing day.

It makes me feel warm and fuzzy all over.

S.

King Peanut

Look how big he's gotten!

Remember back in June when he was just a little nut?

On the medical front, today was PET/CT day. These days usually begin with paperwork, followed by a long wait. Then "PET prep," followed by a long wait. Then "injection and localization," followed by a long wait. Then the actual PET, which usually takes about 15 minutes. All in all though, the whole procedure usually takes about 6 hours or so.

Imagine my surprise when I kissed E. good-bye at 9:30am and received a call from him at 11:05am that he was all done! Woohoo!

For some reason, labs can't be done until Sunday. And, of course, we won't find out anything about the PET or the labs until the doctor's appointment on Monday.

In the meantime, we're gonna enjoy our weekend. Hope y'all do too! (Said in my best Texan drawl.)

S.

Who's in charge here?

I'd like to file a complaint with whoever is in charge here.

Whoever thought it would be a great idea to take a direct flight to Houston obviously never considered:

1. that direct does not mean non-stop
2. that stops without changing planes means you stay on the plane (go figure)
3. that staying on the plane means no grabbing a bite to eat (and 12 mini-packages of peanuts do not constitute a meal)
4. that two stops from Reno to Houston makes for a very long time stuck on a plane, especially with a squirmy, active, impatient 9 month old

(On a brighter note, direct flights do guarantee you don't miss any connecting flights . . . which we would have considering the delays we faced today.)


Whoever thought that short-term child care is always available at MD Anderson obviously never considered:

1. that changes to that service would be posted on the website (no need to look when you already know how it works)
2. that the hospital would be totally closed to children under age 12 because of the threat of H1N1 (like they can't even walk in the door)
3. that because of the threat of H1N1, the two short-term child care centers would be closed until further notice


Whoever is in charge needs to be demoted, that's for sure.

Houston Bound

It is time for us to head back to Texas. E. has a series of tests, including a PET/CT, scheduled for Friday. Then, we have appointments with doctors next Monday and again next Wednesday. We're anxious to hear what they have to say.

Aside from the anxiety we're feeling from the pending medical tests and appointments, the weather is also adding a bit more anxiety. Most of our arrangements are contingent upon the weather. If the weather is bad, then our flight might get delayed or cancelled (if E. misses his tests, then the doctor appointments become pointless). On the homefront, bad weather could really wreak havoc on our plans . . . if the weather is bad, there might be a snow day . . . if the weather is bad, our friends might not be able to travel from out of town . . . if the weather is bad, grandma might not be able to drive to our house. All that translates to potential childcare crises as each time slot is scheduled to be covered by a dear friend or family member. IF the weather is bad, things MIGHT happen.

There are many things out of our control in the world. Cancer. PET scans. The weather. (Just to name a few.) We can't stress and worry about all the IFs and the MIGHTs at every turn. So, we'll continue to try to control the one thing we can . . . our attitudes.

So, here's to positive attitudes! And good weather. And clear PET scans. And no cancer.

Yeah, all of that.

S.

Tis the season

Done

Done.
Finished.
Finito.

This was it! The final three chemotherapy pills went down the hatch this morning. And none too soon either!

E. has proclaimed 6 rounds in a row of this chemotherapy protocol as "too much."

He was too tired.
He was too sick.
He was too cold.
He was too crampy.
He was too achy.
He was too miserable.

Now it's time for a well-deserved break! While jetting off to Jamaica isn't on the agenda, a Friday night Christmas party is! It's a good start at least. :)

S.

#12 is Finally Here

E. finished IV chemotherapy #12 today! Woohoo! He is so looking forward to getting a break, re-energizing a bit, and putting some meat back on his bones. He's still got a week's worth of oral chemo to go, but the end is in sight. I can't even begin to tell you how relieved he will be to have it all finished (for now anyways).

E.'s dad came to visit for a few days and hung out with E. in the infusion room today. While probably not as good as a day hunting or fishing, at least it was a day for some father/son time. Time that I think both of them needed. It's good to see them together.

I suggested we postpone Thanksgiving a week or so, but E. wouldn't hear of it. I also suggested that we *gasp* order our Thanksgiving meal from a local grocery store, but E. just rolled his eyes at me. So, tomorrow, one.day.after.chemo., E. will be cooking a complete HOMEMADE Thanksgiving feast. There will be an over-abundance of good food, so if you and yours would like to stop by, consider yourself invited. We would welcome the company.

S.

* Edited to add: I just read the title of this post and chuckled to myself. That'd be chemo #12, not kid #12, We're good with 11 thankyouverymuch. :)

Cutie Patootie

Tired

E. is dead-ass tired.

Wednesday was a typical chemo day. Even Thursday and Friday were pretty much normal, considering they were the two days post-chemo. I was pleasantly surprised, as I had anticipated that this round of chemo might be tougher for E. since he was still battling the flu and pneumonia. All in all, it was better than expected. Things seemed status quo.

Until Friday afternoon.

Then it hit.

Energy sucking fatigue. Overwhelming exhaustion. Extreme tiredness.

Since then, he's slept more than he's been awake. He hasn't gotten out of bed much, although did make it to the couch for a couple of hours. The tv remains on (alternating between sports channels, food channels and the history channel), but he's only watched a few minutes here and there. He's slept, slept, and slept some more.

Obviously, he needs it, right? Sleep, I mean. People always say that sleep is good for healing the body. I sure hope that's the case.

Sweet dreams E.

Chemo's a Go

We met with E.'s oncologist today. While his blood counts aren't wonderful, they aren't horrible either. The doctor felt comfortable with continuing with the scheduled chemotherapy tomorrow.

This came as a great relief to E. If this round of chemo got pushed back, then the next round of chemo would get pushed back too . . . and the follow-up PET scan . . . and the trip to Texas.

E. just really wants to get these last two rounds over and done with.

A visit with E.'s primary care provider yesterday confirmed that E.'s on the right track. The three antibiotics appear to be working. A cough syrup with codeine was prescribed to help with E.'s coughing spells so he can get some sleep at night. E. will continue to take Mucinex during the day to loosen that junk up and get it out of there.

Now we're just hoping that the side effects from chemo aren't going to hit him worse in his weakened state. Healthy vibes and positive thoughts.

S.

Grandpa

Peanut with his Grandpa.

(The ORIGINAL E.)

Moot Point

It's all a moot point.

The doctor came in.

E.'s chest x-ray looks good.

His blood counts are going the right direction.

He is being released.

We are blowing this popsicle stand!

YAY!!!

S.

New Rules

E. called me this morning on my way back to the hospital and informed me that a new nurse had come on shift. With this new nurse, came "new rules." Supposedly, she reviewed the policy and interpreted "isolation" differently.

E. is now confined to his room. He cannot leave. The door must be shut. The nurse will no longer wear a mask, gown and gloves when entering his room, but rather a space suit (SCBA at all!). Visitors will be limited to adult family members. Visiting times will also be limited. And the part that really chapped my hide . . . the nurse would be CALLING HIM ON THE PHONE to check on him! What the ??? If that's the case, think they can just call him at home?

I walked into the hospital ready to scrap. I got to E.'s room, only to find all sorts of new notices and warnings posted all over his door. I grabbed a mask and was about to open the door, when THE NURSE stopped me. She greeted me with, "I was warned you would be coming." Needless to say, we didn't get off to a good start. I bit my tongue although I was really ready to throttle her.

So, here I am, in E's room. Thinking of the various options. Trying to collect some facts. Figuring out who I am going to call. Deciding how I am going to proceed. Reminding myself to be diplomatic and calm. Grrrrr.

S.

Doctor Rounds

The doctor was just in. (A doctor that practiced in Elko for 23 years and that I knew! Small world.)

E. gets to stay another night at the ole Bed and Breakfast.

They'll draw E.'s blood again in the morning. And do another chest x-ray as well. If everything is headed in the right direction, there is a chance he could go home tomorrow.

As everyone knows, sleep is hard to come by at the hospital (aka Bed and Breakfast) so let's hope E. can go home soon. He'd really like to get some sleep in his own bed.

S.

Limo Service

Can you say stubborn???

I nagged. I begged. I pleaded. He refused to go to Urgent Care.

Unfortunately, Peanut is sick too. It was only when I said I was going to take Peanut to Urgent Care so I might as well take him too, that E. reluctantly agreed to go.

E. and Peanut had matching temperatures . . . 102.5.

Matching diarrhea.

Matching vomiting.

Matching all-over-cruddiness.

Peanut was proclaimed to have "the flu" and Tamiflu was prescribed. (As a side note, many, many thanks to Jenn for rescuing Peanut, retrieving his things, filling his prescription and saving the day. She's been pooped on, peed on, and puked on, and she still loves the little guy! Peanut could use your good thoughts too, as he is still super sick. The Tamiflu and the Tylenol won't stay down, so he's simply miserable.)

E.'s case was a little more complicated. He was dehydrated. Because he hasn't been able to take his diabetes medication (since he can't take the meds on an empty stomach and hasn't been able to keep anything down), his blood sugars were out of whack. His oxygen saturation level was poor. He had "tachycardia" (a too fast heartbeat, I am told).

So, he got a limo ride . . .

Oh yes, that is an ambulance you're seeing. Captured on my cell phone.

You can imagine how thrilled E. was.

I will tell you this . . . as he was being loaded on the gurney,

he looked at me and said,

"I guess I should have listened to you, huh?"

Ya think???

After a few hours in the emergency room, this is what we discovered:

* E.'s temperature climbed to 103.4. Tylenol helped.

* A "quick test" for Flu A and Flu B was negative. It is my understanding that that test will be sent out and there is still a possibility that something could come back positive.

* A nasal swap was collected for HINI. (Holy smokes . . . that was not at all like I imagined. I think they were trying to reach the back of his brain with that swab!) It was also sent out and the results won't be available for a couple of days.

* The tests for Flu A, Flu B and H1N1 could all come back negative and he could still have "the flu." Just some other strain.

* His heartrate continues to be fast, so he's on a heart monitor. Other than being too fast though, there's no abnormal activity.

* Blood was collected for cultures. They want to check for other possibilities of infection. Things have to be "grown out" before we'll know anything there.

* A chest x-ray showed the beginnings of a pneumonia.

* A medication called Phenergan really does help with nausea, but it leaves a sore hiney.

* His blood sugar climbed to 212. Then 250. Then 280. They're keeping it stable with insulin now.

* Oxygen has helped with the dizziness and light-headedness.

Then . . . he was admitted. Yup, the stubborn butthead had to spend the night in the hospital.

He's in "isolation." Visitors have to be healthy, over 18, and have to "mask up" to visit.

He's gotten bags of hydration.

He's taken Tamiflu.

He's gotten three different IV anti-biotics.

He's doing breathing treatments.

His blood sugar is being monitored and controlled with insulin.

His heart continues to be monitored, but seems normal.

His fever is being kept down with Tylenol.

He continues to receive oxygen.

He looks waaaay better today (he won't let me post a before and after picture . . . drat). He says he feels a bit better too.

A doctor is supposed to check in on him today, but it's Saturday, so who knows when that will happen. E. did have to submit his meal requests for tomorrow, so that wasn't a good sign for getting out of here today, but we can still hope.

The next time any of you see E. and want to slap some of that stubbornness out of him, feel free.

S.

Sick

E. is sick. Not really sure what it is . . . sore throat? cold? stomach bug? flu? all of the above? He feels like crap. And he doesn't look much better.

I'm worried he will become dehydrated.

I'm worried it will get worse.

I'm worried the chemotherapy schedule will be changed.

I'm thinking a visit to the doctor is definitely in order. I wish I could convince him of that.

He is really sick.

S.

Happy Halloween

Happy 1st Halloween

from the Peanut,

er, the monkey. :)

Double Digits

Chemo Infusion #10 complete.

E. says his body is getting used to some of the poison coursing through his veins.

He may have a point as some of the side effects aren't seeming to hit him as hard this go round. For example, he's actually awake this morning. I can't remember a day after chemo that he didn't sleep all day long. Now, that's not to say he won't take a nap or two throughout the day, but this is the most I've seen him awake already. And he's not nearly as loopy either. While that's not nearly as entertaining, I'll admit . . . it is better. He seems more coherent, more with it, more alert.

On the flip side though, that weird cold side effect is getting worse and worse. I don't think the cold weather is helping in that regards. The cold chills him to the bone and it takes a lot to get him to warm back up. The cold air burns his mouth, his throat, his lungs. His nose tingles as does any exposed skin (not in a funny tingly way either . . . it is almost painful, he says). Room temperature water is too cold. As soon as the warm shower water goes off, his whole body tingles from the wetness. He drops things that are chilly . . . he goes to grab an item, his hand touches the surface, the tingle sensation hits, he loses his grip and the object crashes to the floor.

As for the stomach nausea, the verdict is still out on that one. We'll see if it is better or worse in the days to come.

S.

Just Because

A New Phone

E.'s phone, which he's had since 1982 or somewhere thereabouts, has finally given up the ghost. He actually thought the battery was just dead, but after charging it all weekend and not even getting a blip of power, he conceded that his phone wasn't coming back to life.

It's hard to imagine a time without cell phones. How did we all once survive? It's a convenience we've come to take for granted, but almost can't live without. With that in mind, a trip to the cell phone store was on the agenda for first thing this morning.

E. now has a cell phone in hand. The problem should be solved, right? Life should be back to normal, right? There's a couple of problems though. The first problem is that just because he has a cell phone, doesn't mean he knows how to use it. There will be a learning curved involved, no doubt. The second problem presents even more of dilemma. None of the contacts from E.'s old phone were able to be transferred to E.'s new phone (and without the ability to turn the sucker on, we can't even retrieve them manually).

So, if you'd like to hear from E. ever again, you're gonna have to give him a call or send him a text (and make sure you leave YOUR NAME AND YOUR NUMBER). His cell phone number is still the same, but his contact list is empty. Please help us fix that.

Thanks,

S.

No Clean Teeth

E. had a dentist appointment last week for a simple bi-annual teeth cleaning. When they found out he was still undergoing chemotherapy, they said no go.

After talking to the oncologist, we learned that teeth cleaning needs to be postponed until after chemotherapy. While on chemotherapy, blood counts have a tendency to be out of whack and with a low blood count, there is an increased risk of infection. The inevitable minor bleeding that occurs during cleaning could become serious and bacteria could enter the blood stream as well. There you have it. No clean teeth.

S.

Our request?

As we looked to make the arrangements for our next trip to Texas, we discovered that E.'s next PET scan is scheduled for December 2nd. Since E.'s last oral chemo won't be completed until December 2nd and since we were informed that there needed to be a week in between treatment and scans, that clearly wasn't going to work. Obviously, the earliest E. could have his PET scan would be December 9th. We e-mailed the scheduler to inform her of the conflict and this was the response we received:

"We will take a look at your appts. and try to accomodate (sic) your request."

Huh? "Our request?" What the ??? We're just going off what the medical professionals have repeatedly told us. Our request? Like we're trying to schedule his medical appointments around our tropical vacation or something?

Let's hope they can accommodate "our request." Geesh, we must have some nerve.

S.

Go Vikings!

Kick some Green Bay ass!

Oral Chemo

After IV chemo is done, oral chemo begins . . .

All the meds get sorted for the whole week.

Meds for the a.m. and meds for the p.m.

Now I know why old people use those quirky weekly pill boxes.

How else are you supposed to keep track?

This is one morning's dose.

The six pills on the right are standard issue for the whole week.

Every morning and every night.

The other pills have some variety,

in type and in dose,

depending on the day of the week and the time of the day.

I'm not sure how many pills that is over the course of the week.

But it's a lot.

IV chemo happens on Wednesday.

Oral chemo starts on that same day

and runs to the following Wednesday.

Then there's the week OFF.

S.

Chemo in Pictures

Here we are.

Infusion room.

E.'s port.

Notice how he shaves his chest area on chemo day?

Ripping off the tape is much less painful that way.

That would be the needle they put into the port.

(Numbing cream he puts on his port a couple of hours before

makes it so he can't even feel the needle going in.)

Needle in. Port accessed.

All secured with a bandage so everything stays in place.

A little hydration.

A blood draw.

Right from the port, so no new sticks.

Pre-chemo steroids.

Ondansetron.

Dexamethasone.

Chemo drug #1.

Docetaxel/Taxotere.

Bright neon stickers.

Chemo alert. Chemo alert.

Precautions must be taken when dealing with chemo drugs.

Blue gowns.

Protective eyewear/goggles.

Long thick rubber gloves. (Not the flimsy latex ones.)

Chemo drug #2.

Oxaliplatin.

IV pole hanging with bags.

Chemo drug #3.

Bevacizumab/Avastin.

Almost done.

Flushing the port with some Heparin.

Chemo day is over.

Time to sleep.

Rinse, lather, repeat in two weeks.

Food

I almost forgot to share one other pesky side effect . . . E.'s taste buds seem to have been "damaged." Not sure if it's a temporary or permanent thing, but the chemo has definitely messed with them. He says nothing really tastes as good as it used to. And he really can't taste salt at all. For a gourmet chef like E., you can imagine how annoying that is. I always affectionately call E. a "food snob" since he really does have some strong opinions about food. He's the one who can taste a meal in a restaurant and tell you what spices were used and how it was prepared. As for me, I haven't really met a food I didn't like so I'm not much help when he asks me to taste something. My general response is, "It's good." That's not exactly helpful when the Chef E. is trying to recreate a recipe or wants to know which spices should be added. Anyways, his lack of taste probably effects his appetite too (just like when you have a cold and don't really feel like eating because you can't taste anything).

And just like his daddy, Baby E. seems to be developing some strong opinions about food. We recently began feeding him "real food" and for the most part, he likes almost anything. Sweet potatoes, squash, pears, peaches, apples, bananas, mangos, pumpkin . . . all yummy. And then there are carrots. The first spoonful went in his mouth and his eyebrows immediately went up. Then his nose scrunched. His eyes watered. His mouth curled. Out shot his tongue, covered with pureed carrots. He couldn't get them out of his mouth fast enough. His whole body literally shuddered in disgust. Daddy went back to feeding him peaches and life was good again. Peaches. Peaches. Peaches. And then . . . a sneak attack. Daddy tried to slip in another spoonful of carrots. Baby E. didn't even come close to falling for that trick! Gag. Spit. Sputter. Out came the carrots. Oh well, maybe some other time.

Baby E. finishing off the last of his squash. Delish.

S.

Week on / Week off

It's tough to always know what to write. How much can you hear about chemo and its side effects? Yet, it seems like our lives currently involve around just that . . . chemo and its side effects.

Infusion day was last Wednesday. E. had a nice change of company when a close friend accompanied him and sat with him instead of me. Those IV medications wipe him out though and by the time he got home, he was about falling asleep standing up. It was obvious throughout the night that he wasn't comfortable and at about 3:00 a.m., he could no longer pretend that he was still sleeping. His stomach hurt. Not like nausea. Not like cramps. Just pain. And pain bad enough that he couldn't sleep.

I hate seeing him in pain and suggested pain medication. Our options here at the house include over-the-counter Tylenol or liquid Morphine. Clearly, something in middle of the road there would probably be more appropriate. I highly doubt that Tylenol is going to cut it, but the Morphine might be a little much. It's all a moot point though since E. wouldn't hear of it. There were no calls to the doctor, no prescriptions to be filled, no pain medication to be taken. His answer? He was just "hungry." Those are some mighty big hunger pains there, if I do say so myself.

The pain did eventually subside enough that he was back asleep by 9:00 a.m. and other than a few periodic moments when his eyes fluttered open, he remained asleep until 6:00 p.m. The day after infusion really does seem to be the worst. Total exhaustion. And that dang "chemo brain." He thinks he is lucid, but in actuality, he is far from it. Broken, fragmented conversation. Random, irrelevant comments. It may not seem funny (and I highly doubt he sees any amusement in it), but it really is quite entertaining. Kind of like a drunk guy. When you're sober. Only, E. is always cute and never crosses that oh-my-you're-drunk-and-oh-so-annoying-won't-you-please-shut-up-and-just-pass-out line.

Aside from the intense fatigue and the "few too many" nonsense, E. still experiences that strange cold reaction. He is also still battling sinus "stuff," which drives him crazy. Initially we thought it might be a virus or allergies, but now we're thinking it might just be another bothersome side effect. It just won't let go. And then there is the pain. He seems to be in more pain here and there. With the pain, comes loss of appetite. His tummy hurts and creates some nausea and so he just doesn't feel like eating much. It's not like he doesn't eat, because he does. It is just hit and miss, depending on how he's feeling. Having said that though, I do think he's dropping a bit more weight. Pounds that he can't afford to lose.

Tomorrow he'll take the last of his oral chemo meds and officially finish another round of chemo. He'll meet with his oncologist, who will check to make sure his side effects are manageable, his weight is stable and his blood counts are okay (white blood count, hemoglobin, hematocrit and platelets). Then he'll enjoy a week off, only to have to do it all over again.

Week on. Week off. Wax on. Wax off. (Sorry . . . not only am I dating myself with the "wax on/wax off" comment, I think I'm also showing just exactly how frazzled my pea-brain can get after a long week and few too many sleepless nights.)

G'night all.

S.

More Chemo Awaits

E. has responded magnificently to chemotherapy. Actually, the word "magnificently" is my word choice, and it pretty much summarizes the doctor's medical mumbo-jumbo.

The PET/CT showed "NO UPTAKE." As you might recall in PET scans, rapidly-dividing cells (such as cancer) "take up" the injected radioactive glucose. So, if there is "no uptake," that is a good thing. A very good thing.

Along with the no uptake, concerning lymph nodes have also decreased in size. For instance, the right supraclavicular lymph node last measured at 2.5 cm and now measures at 1.5 cm. The lymph node in the upper abdomen is currently 1.0 cm when it was previously 1.5 cm. Additionally, there were no new lymph nodes that appeared suspicious. Yay!

The esophagus also appears normal, with no masses detected and no abnormal uptake. Yay again!

The Physician's Assistant reviewed the PET/CT results with us, as well as E.'s latest labs. E.'s white blood count continues to be a little low, and a few other numbers were a bit out of the normal range, but overall nothing was worrisome. Another yay!

The doctor was pleased with E.'s response to the latest chemotherapy regimen and wanted E. to continue with the same medications and schedule. "It is good, but you have to continue chemo," he said. He indicated that after 12 or so rounds, E. might possibly get to take a "break." So, it looks like at least another 6 rounds are in E.'s immediate future (having completed 6 so far . . . the initial 2 on the first protocol, followed by 4 on the MD Anderson protocol). We'll then return to Texas again and see what the doctors have to say then.

We inquired about the possibility of surgery and were disappointed when the doctor said, "I personally doubt surgery is going to be an option." He did say that after E.'s next visit in approximately three months, he would present E.'s case to the team again (included on the team is the thoracic surgeon) to see what the team thought would be the best course of action. We trust that they know what is best, but it is still difficult.

E. is not thrilled that he must continue to "have poison running through his body," but agrees that it must be done. We suspected that there would be more chemotherapy, but E. was hoping for more of a break before continuing. His next infusion is already scheduled for Wednesday - less than a week away. Four rounds of chemo stacked right on top of one another took their toll. Like we said previously, the side effects tend to be compounded with each round. Just about the time E. is beginning to feel better, it is time for the next round. And now, on top of the four rounds, there are six more. Ten rounds in a row will not be fun. We all know that E. is a warrior, but a man can only take so much. Keep him in your thoughts and prayers if you will.

S.

HER2+

Today we found out that E.'s cancer is HER2 positive (or HER2+ or HER2 overexpressing).

What's that mean? HER2 is predominantly thought about in regards to breast cancer, but applies to other cancers as well. HER2 stands for Human Epidermal growth factor Receptor 2. (All my HER2 education came from the doctors and the internet, including sites like herceptin.com.)

Normal cells contain HER2 genes, which help normal cells grow and contain information for making HER2 protein (also called HER2 receptors). In normal cells, HER2 proteins help send growth signals which tell the cell to grow and divide.

In HER2+ cancer, the cancer cells have an abnormally high number of HER2 genes per cell. When this happens, there is too much HER2 protein, which is called HER2 protein overexpression. Too much HER2 protein is thought to cause cancer cells to grow and divide more quickly. This is why HER2+ cancers are considered more aggressive forms of cancer.

Herceptin was discovered as a treatment for women with breast cancer whose tumors have too much HER2 protein. Since then, Herceptin was found to also be an effective treatment for other HER2+ cancer patients. But . . . because E. has responded so favorably to the current regimen, his doctor feels like there is no need to add Herceptin at this time. There would be no way to measure if the Herceptin was making a difference or not, since at this point, the PET/CT shows no uptake. Of course, if any future PET/CT shows uptake again, Herceptin would be an additional treatment at that time.

Just thought I'd share what I learned today, as this was all new to me.

S.

Anxiety

Here we are again. In Texas. The route has gotten predictable . . . we have our routine down pat at the airport (I go get the rental car while E. gets the luggage), we know our way to the hotel, we've got the parking figured out, we know our way around the hospital, we know some good places to eat. It is strangely comforting in a way.

There always seems to be a kink or two, no matter how much we think we have everything planned out. We scrambled to make final kid arrangements, thankful to all those willing to help us out (Uncle Kirk, Oma, JenniferRemy, Grandma and Poppy). A couple of prescriptions didn't get filled because of poor planning on my part (darn the three-day weekend) - again, thankful to Jen who came to the rescue. And some things were just out of our control . . . over an hour on the tarmac in a completely full airplane in the Arizona heat wasn't exactly part of the plan. Nor was having to change rental cars after we absolutely could not get Peanut's car seat to fit in the back seat of the first car they gave us.

We made it though. We're sitting in our comfy hotel room, looking out the window at the overcast drizzly sky, appreciative of the lower temperatures the thunderstorms bring. In an hour or so, we'll meander across the sky walk and make our way through the hospital maze to E.'s various appointments . . . including the "big" PET/CT. The day is scheduled minute to minute with appointment after appointment. We won't be done until after 5:00 pm.

And then we won't know a darn thing until we meet with the doctor tomorrow afternoon. As much as we are ready and as hopeful and optimistic we are, our anxiety level is palpable.

S.

Final Round of Chemo

Or actually, I should say "Final Round of Chemo that We Know About Right Now."

We're sitting in the hospital infusion room (aaaah, the beauty of a laptop and WiFi) while bag after bag drips into E. Pre-hydration, followed by two pre-meds, then the three chemo drugs, and finally post-hydration. So, 7 bags in all. Some are pretty quick, while others seem to take forever. These are long days for E. We did have a welcome distraction today though with a cheery visitor who even brought a delicious lunch. (Thanks Mapper!)

E. will take his oral chemo (3 pills in the morning and 3 at night) for the next week and that's as far as the plan goes. For right now. Then it's a matter of E. getting the rest he needs and getting some of his strength and energy back. The side effects seem to be piling up on top of each other with each chemotherapy session back to back. Not fun stuff.

We'll be headed to Texas again on September 8th and the following day, E. will undergo a battery of tests including lab work, CT scans and a PET scan. On the 9th, we'll meet with the doctor to hear how effective this regimen of chemotherapy has been and what the plan is from there. E. knows it may possibly include more chemo, either with this current protocol or maybe even with something different.

Last time we were at MD Anderson, we were told that the earliest surgery could happen would be 8 to 12 months from now, depending on how E. responded to the treatment. Since that is still a long way off, we're assuming there will be continued chemotherapy or something (???) in the interim. Guess we'll wait and see what the doctors have to say.

Also, E.'s platelet count is in the low range again (low platelets can cause excessive bruising and bleeding; really low platelets can cause dangerous internal bleeding). He's back to getting lab work every few days (instead of weekly) to monitor his platelets. According to the doctor, if they get too low, E. will have to have a platelet transfusion.

That's the update for now,

S.

Little Peanut

Just to add a little "charm" . . . a little "warm fuzziness" . . .

How can you not smile when you see that smile? those eyes? those cheeks?

Don't you just want to gobble him up?

(And notice the adorable onesie he's sporting? It doesn't get any cuter than that!)

Flu

Unfortunately I got the flu a few days ago. Knocked me on my butt. I was totally miserable. E. wasn't feeling great either (considering he's in middle of Round #5 of chemo) but being the stud he is, he picked up the pieces. He held the homefront together while I went back and forth from the bed to the toilet.

How did I repay him and his kind deeds? I gave him the flu! How horrible is that? Trust me, I know . . . horribly horrible!

You might guess that he's feeling especially yucky right now. You'd be right.

You might guess that I have some making up to do. You'd be right again.

S.

Chemo After-Effects

E. is just about done with Round #5 of chemo. He seems to be doing better with this round than he has with the prior two rounds. While he's still tired and lethargic, there seems to be much less "chemo brain" going on. Even though he hardly ever complains, E. now admits that those first two rounds of this new regimen were pretty bad. Hindsight is some pretty powerful stuff. Gotta be thankful that the side effects are getting better rather than worse though.

E. is sick of chemo. Sick of meds. Sick of doctor appointments.

Antibiotics

E.'s been really having a time of it with a constant runny nose, lots of coughing, excessive sneezing and a sore throat to boot. Not really sure if the symptoms are side effects of the chemo, if he caught a cold or some other bug, or if he's just experiencing allergies. Any which way you look at it though, he doesn't feel great.

At his weekly check-up with the oncologist today, concern was expressed about a possible sinus infection. The doctor would rather be safe than sorry and didn't want to wait to see if the infection got worse before doing anything, so he prescribed some antibiotics. (And surprise, surprise, we actually filled the prescription and E. is actually TAKING the prescription. It goes to show that he really is feeling like crap.)

And as a side note, I'm not exactly sure how the co-pay for a $2,000 chemo drug was 20 dollars while the co-pay for a simple antibiotic wound up being 40 bucks. Go figure.

E.'s resting up and trying to feel better before Wednesday and the next round of chemo rolls around agin.

S.

Chemo Update

Since we've received a few phone calls wondering how E. was doing, I figured I'd post an update. But there really isn't much of an update. He powered through the last infusion day just like the others and has about wrapped up the oral medications as well. Round #4 almost done.

The side effects have been pretty much the same . . . lots of fatigue, some general discomfort and restlessness, tummy troubles, and that weird cold sensitivity. Even though he dozes on and off all day long, he never gets that feeling of being rested as it is never that deep refreshing sleep. For several days after the IV chemo, he also experiences some "chemo brain" . . . out of whack equilibrium, a bit of confusion, slow reflexes, and an all-around sense of being "off." He has been able to avoid any hand-foot syndrome though and for that we've been thankful (the pictures in the brochure looked grusome).

I told E. that I was posting an update to the blog and asked if there was anything he wanted to add.

"Hi."

Wow. Heartfelt. Moving. After razzing him a bit, he added . . .

"Thanks for all the continued support. Your thoughts and prayers mean a lot."

Awwww.

He's right though. It really does mean a lot.

S.

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.