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.