Wednesday, July 27, 2011

Wednesday at Chemo Clinic

I'm going to try to make these letters bigger. Is this working?

Bill saw the onco today, and failed his blood test, so he had to get a nice long drip, but only of magnesium. Still, it took most of the day.

He feels a little tired right now, but nothing worse than normal. So that's good.

Only worry I have right now is that his blood urea nitrogen (BUN) scores have continued to climb over the last month. I am wondering if that is connected to the new itching, as his BUN was at an all-time high today. Well over the limit for normal. One of the first signs of BUN disorder can be itching.

Well, I thought Miss Oncology would think of THAT, but no, she didn't. And why didn't she?

Because she thought it would be a better use of her time to yell at me for mentioning Bill's itching problem. I'm not kidding!


I am SO MAD!

Scolded for CONTRIBUTING information that Bill ASKED ME FOR while he was listing his issues, and darned if, as soon as I said one thing, that oncologist didn't suddenly say to me in a stern voice (as stern as you can sound when you're a 4-foot-tall 23-year old oncologist), "MA'AM, YOU NEED TO CALM DOWN. REALLY!"


Even Bill was dumbfounded. I had done nothing whatever to elicit being talked to like that! I couldn't believe it!

Well, in fine form, I instantly shut my mouth, and started silently perusing the posters on the wall and never looked at her again, never talked, never acted like I knew anyone else was in the room for the rest of the time.

She never made the connection between the BUN score and the itching, and she did not take the itching seriously.

"Oh, really, fooooo?" I thought. "If that BUN score is related to that itching, and you didn't do anything about it, except tell me to shut up, I hope you can spell m-a-l-p-r-a-c-t-i-c-e."

So after being unimpressed with everything else Bill said was wrong with him, she said, at the very end, "Anything else?" and Bill looked at me and said, "I don't think so. Anything else?" and I just shrugged, like "Don't ask me; I'm just his CAREGIVER who spends 40 hours a week learning about his health. Why would *I* have anything to contribute, Miss Impudent Hussy?" No, I didn't say that, but I thought it. And a lot more besides.

After she left, Bill said he couldn't believe she had done that, and that he wished he had said something smart-aleck back to her, but I said, "No, it wouldn't enlighten her AND we have no power in this situation. If she's that weird, she could mess with us if we really made a stink out of it."

Luckily, we didn't have to behold Her Royal Oncologism any more after that. We went into the hands of the nurses there, who are really nice, respectful, kind--even to the lowly caregiver.


Tuesday, July 26, 2011

The Bad Blogstress Still Reigns

Maintaining my well-deserved title of "Bad Blogstress" I hereby write my paltry update on Young William, only 3 days late!

Hmmmm. Well, in SOME ways, he is better, but he is having some weird side problems.

Our next appointment is tomorrow, Wednesday, July 26th, with the Boone Oncologist and then, soon after, but no date set at this point, we go to Wake Forest for The Scan. Which we dread, of course, but face with optimism!

His new issues are REALLY new. He is having a big itching problem, all over his body, worst on his feet, legs, arms, and face. It's even keeping him awake at night. And he takes Benadryl already, so there is some antihistamine working, but still he itches.

He is also still having REALLY bad acid reflux feelings in his esophagus, and occasional strong pain in the center of his breastbone. Not his heart, but lower. That one really kind of upsets him.

But then again, any of you who've had experience with cancer in yourself or a loved one, know that once you've had cancer, everything is scary! Every little thing, you wonder. Especially if you're me! The hypochondriac of the universe! And now my hypochondria can work by proxy on the cowboy! If he says, oh, I have a paper cut, first I FEEL a paper cut on myself, and then I'm GOOGLING for hidden dangers! hahah

I know better; yes I do.

So I'll write again (don't listen to promises of bad blogstresses!) after tomorrow, to tell you what the Onco says, and then I'll TRY to remember to post next Sunday, just a weekly update.

Thank you for keepin' on caring allllllllllll this time!


Monday, July 18, 2011

Billybob is FINE!

Oh, I'm a horrible blogstress! I forgot Sunday AGAIN! It was because we were having TOO MUCH FUN with a visitor who stopped over and made us laugh a LOT and who brought us handwritten letters from the children in Uganda who/whom we are sending to school for a second year, since the last time we helped with it, we went into such an ecstatic state that we thought someone had slipped us a mickey! (Wow. I have been listening to too many of Bill's 1940s radio shows on the computer, that I would be familiar with the phrase "slipped us a mickey.")

Okay, now de-convoluting the above paragraph, what was I saying?

Oh, yeah.

Bill is doing very well!

He is better each day, stronger, fewer weird symptoms. His nausea is almost gone, for example.

On Thursday of last week, he got a blood test, and his magnesium had flown the coop, so he got hooked up to an IV for a big drip of that. This coming Wednesday (in two days), he gets another test and will meet with the Boone Oncologist for the last time this summer! Kind of a celebrational moment.

We thought we knew when his scan would be, but now we don't know. So we are trying not to think about that scan.

However, we did get some good news via Google research, that fewer than three percent of people with bladder cancer as severe as Bill's (especially having spread to the liver) EVER achieve remission! So the fact that he is in remission right now is certainly something of a miracle! I actually think the stats were worse than "three percent," but I don't wanna freak Bill out when he reads this. The actual text was more like, "It is generally impossible to achieve remission after bladder cancer has spread to a distant organ such as the liver or lungs." But, the reality is, that makes the greatness of his remission that much greater!

We are grateful, and I'm thanking the Author of the Storyline for this undeserved blessing, and this summer!

Thank you for the prayers you sent up. Certainly looks like they registered! Actually, I don't know how to draw the connection between prayers and answered prayers, as it seems rude to gloat when some prayers appear to be answered and some don't seem to be, so rather than sound like I'm into the Gospel of Prosperity, which I ain't!!!!, I am wording this carefully. I do believe that ALL good things come from God, but that some things don't look "good" when you first open the package. Yet the message of the Resurrection is that we don't know how it all turns out till later, and we're given a message that we WILL like the ending...which happens on the other side...and is going to be as big of a surprise as, oh, I don't know, say......someone rising from the dead?

Thank you, God...

Sunday, July 10, 2011

A Student's Perspective

This post, for Bill and for me, is a tear-jerker.

No, wait! Nothing bad has happened! Rather, it's a SWEET kind of tear-jerker.

One day this week, we unexpectedly received the following letter from Kristen, one of Bill's students of last semester at App State. We were so terrifically moved, and its meaningfulness was so intense for us, given the context of Bill's illness and struggles to teach last semester, and the question of his future ability to teach, that we....well....we were deeply moved, to say the least...

I wrote back to this student (she mailed her message to me, not to Bill), and after trying to put into words for her how much this had meant to us just now, I also asked her for permission to reprint her letter and name, and she granted it.

In order to make sure that YOU, the blog reader, know what Kristen's letter meant to us, AND in order to let Kristen's letter be the last part of this blog entry, as its grand finale, I will first post, below, part of my response to Kristen. Finally, you will see Kristen's letter in full.

Here is my response to her:


You can't possibly imagine how much this meant to me and to him to have a letter like this at this exact time in his life. Your beautiful message reflects to him something he has spent his life working for, even praying for--to have really made heart-to-heart contact with a student--because, believe me, he loves his students, and his sharing of his beloved literature with them, as much as he loves his own family, and he cares SO much about really reaching you. And here, he gets a letter like this, proving that he has, at least with you, achieved his life's wish. It is just beyond the pale, that you took the time to let us know this, and to share the beauty and sweetness of your heart with me, and with him.

And here, at last, is the letter Kristen sent to us, to which the above note from me was a reply:

Dear Beth,
I’ve been meaning to email you for some time now, but I didn’t really know what I was going to say once I did. I had professor Drennan’s English class this past spring, and on one of the days he notified us about canceling class, I think he used your email account (which you hopefully still use or I'm out of luck with this message) to send the email. And later on, for whatever reason, I was randomly Googling names as I am wont to do and upon entering yours I surreptitiously came across your blog. It was such a random occurrence that I guess I was meant to find it, and I’m really glad I did. It’s not only wonderfully well written and sad and funny rolled into one, but it gave me a glimpse into the life of my professor that we as students could only guess at. It was really difficult to read much of the time, knowing how sick he was and that he was there in front of me teaching every day through it all. And I would go back to my dorm or get online between classes and get the latest updates. I remember in your post from the last day of classes, you said that he’d said he didn't figure we knew the full extent of what he was going through, and I agree. What we saw in class never equaled what I was reading in the posts, his love for the subject keeping him smiling throughout each period, looking very tired at times but cheerful and passionate about teaching us. He’s really my hero at this point. I was thrilled to read that it’s all over now. Keep writing! You have a wonderful, strong husband and I feel honored to have taken his class.

Kristen Fox

Monday, July 4, 2011

Happy 4th of July from Cowboy Bill and Diamond Lil

We're having a wonderful 4th of July. Our cowboy is slowly but definitely getting a little bit stronger each day. His appetite has increased a tiny smidgeon, too. We've cooked out ribs and chicken (I'm the BBQ cook; Bill is the appreciative audience), and we've entertained a little visitor one day, named Koko, the white wonder poodle, and we both love the books we're reading, and there's golf and baseball on TV. This is Billybob's idea of heaven on earth.

I'm having a blast reconnecting with all my friends from high school this summer. There were 1,049 students JUST in our graduating class--3,500 in the high school. It was like a complete city! Many of us have now found our way onto Facebook and have our own reunion page, and it's one of the funnest things I've ever experienced.

Now that my caregiver role is greatly diminished by our cowboy's delightful remission, I'm returning to the activities I enjoyed before The Great Interruption occurred in Billybob in January 2009. I'm walking, gardening, weight lifting, interval training on the treadmill, and hiding behind the hedge throwing eggplants at strangers who walk past our house. JUST WANTED TO SEE IF YOU WERE PAYING ATTENTION. Of course I don't throw eggplants. Cucumbers* are much cheaper. [*Can you tell I'm reading Nicholas Nickleby, with the vegetables flying over the hedge? GOG AND MAGOG! GOG AND MAGOG! Funniest scene in all of literature.]

The cowpoke still has trouble with aspects of his body: lots of nausea, metal taste in his mouth, fatigue, breathlessness, turning white, almost fainting, sudden drenching sweats, little fun things like that. But he bought a bag of used golf balls, and every day he drives to the end of the cul de sac and hits a few into the woods. He SO hopes to golf this summer.

Nothing scheduled medically for this week. So I'll write again on Sunday for the holding pattern plan. You know by now that "Sunday" might mean "Monday." oops!

Love to you all and thank you for reading this.

And before I forget: now that your prayers for Bill can relax a little, if YOU have any prayers you'd like prayed, please email them to us. Bill is an incredible pray-er. He prays a long time for his list of names every SINGLE day of his life, and loves to add things to the list. I try to be good about praying, too, but no one could keep up with him! (He's a saint, like, I think, really! In addition to being the nicest, kindest, sweetest, funniest, smartest person I've ever known in my whole life. But don't get me started. I love him too much!)