I have quite a story to tell about my visit to the clinic today but I’ll save it for tomorrow when hopefully I’ll have more energy.

Since I couldn’t get ahold of any of my regular ride-offering people, Honey dropped everything and came right home to take me to the clinic this afternoon. He sounded somewhat eager to leave the office, if I do say so myself!

I may have a mild infection but it’s not strep. My WBC are low low so they gave me a neupagen shot. I will need two more these next two days but we got them to call our insurance company who approved sending me home with them. That means I get to give them to myself! Not a big deal, they don’t really hurt and draw no blood. A pretty big copay on them but we got 12 shots…that’s enough for four more rounds.

They took me off Xeloda for the rest of the week. Apparently, while the brown spots and some pain in my hands and feet are somewhat normal, the redness and swelling in my hands and knuckles is a sign of toxicity. So I’m off it till I go back Friday and then they’ll determine whether or not I should go back on it on a lower dosage or what.

The soreness in my throat should subside as my WBC increase. But, as I’ve hinted here before, it tends to get worse before it gets better. So tonight’s shot and probably tomorrow too. More resting for me. Getting used to it.

I may need to take a couple of these shots while on vacation the first couple of days next week. That’s inconvenient but not impossible. Honey suspects I’m supposed to stay out of direct sunlight after chemo so we’re talking about renting a cabana or large umbrella or something for me when I’m on the beach.

NOTHING IS PREVENTING ME FROM GOING ON THIS TRIP NEXT WEEK!!!! (Unless I’m throwing up and running a fever, of course.)

More tomorrow. Just wanted to let you know I’m A-OK.

it all falls apart again.

The toilet got clogged this morning and still won’t succumb to my frantic plunging efforts.

My post from yesterday has mysteriously disappeared and I can’t seem to get it back nor figure out what the heck happened to it (and Maggie hasn’t even read it yet!).

I called Nurse Skippy to see what he can offer me to help soothe my extremely sore throat and swollen lymph nodes. Guess what he said? Dr. Kane was sitting right next to him so he relayed all that I said to her. Go ahead. Guess! I bet you guessed that he offered me another prescription, eh? Well, you’re wrong. It’s even BETTER THAN THAT! I get to drop everything and get my butt to the clinic this afternoon and every day this week for more of those DELIGHTFUL neupagen shots! LUCKY FREAKIN’ ME!

Do you think they can give me a big fat shot of PATIENCE while I’m there? I seem to be running low lately…

I had a great week off from chemo last week! I went to see Sex in the City with a girlfriend of mine (LOVED IT!) and enjoyed a margarita with my Honey at the Rio on our anniversary! I made scarves, drove myself to ShrinkyDink, visited with friends and family…it was lovely. Saturday night we enjoyed a huge steak dinner at my dad’s house for Father’s Day and then had dinner at a nice chinese restaurant with the Kellers on Sunday night. Friday’s chemo knocked me on my booty though…the first dose of a new cycle always does. I slept during the treatment, all the way home, and all afternoon and into the evening, waking up only to eat and drag myself to bed. Saturday and Sunday during the daytime I spent rest on the couch with NO energy at all. And this week, the fun is over…I have to go to the clinic every day this week for Neupagen shots (to keep my white blood cells pumping) and then chemo again on Friday. Ugh. At least I’ve got rides arranged from various friends and family members which always proves to be fun visiting times!

Three of the past four chemo cycles have resulted in a severe acne breakout only on the right side of my face. (That fourth one I had clear skin b/c of my visit to the spa and the bog mud mask I indulged in whilst there!). Since I’ve been shaving my head though, I just discovered that the acne does not end where my face ends…rather, it continues on up and around the side of my scalp, too. It’s totally disgusting. It looks like I have a disease (which I do! HA!). Plus my scalp is still on the WHITE side while my face has a subtle tan to it. The white backdrop lightly covered with splotches of stubble and red explosions of acne makes for a damn good excuse to wear a scarf 24/7!

Actually, I only wear the scarf when I go out. Sure, I can be proud and think that ‘bald is beautiful’ (still working on believing that but loving that I don’t have to do my hair everyday!) but I detest the staring of the small children who don’t understand why I am a girl with no hair but my husband next to me is a boy with enough hair on his head for a small country. The staring is unbearable. Plus the scarves I’ve made, purchased or received as gifts are gorgeous and soft and fun to wear. I find myself selecting my daily outfits based on which scarf I want to wear that day. I promise I’ll get some pictures up of my scarves soon…I just did not feel much like anything this past weekend when we had time to play modeling.

As you may have noticed, every few weeks we have new decisions to make as far as my treatment goes: which chemo drugs to try next (like we know anything!), when to do a CT scan, whether or not to do chemoembolization again, etc. This past Friday, several new opportunities presented themselves to us and now we find ourselves in limbo again as to what to do about it. After talking to my onc in detail about it all, I had to draw up a diagram of steps to follow in order to help us make a decision. Here’s a summary of what’s new:

1) A friend of Frank’s has successfully cured himself of Hepatitis C with the help of a Liver Transplant Specialist at my hospital. This doctor, Dr. E we’ll call him for now, is helping this guy write a book about his success in order to help other people with the disease. In the meantime, they both heard my story from Frank and Dr. E met with my oncologist (Kane) and the head of surgery at UCH. Upon initially looking at my records and before meeting with the two other doctors, Dr. E didn’t think I would be a candidate for a liver transplant. Apparently, though, something transpired in that meeting that made him change his mind. Basically, as long as the cancer has not spread to any other place in my body, then I would be a candidate for transplantation from a live donor. However, there has always been some question as to the health of a couple of lymph nodes near my liver: they are swollen and look inflamed which could be a sign of malignancy or it could just be irritation from the nearby tumors. We won’t know without a biopsy and and PET scan (which is just a big CT scan from the base of the brain to the mid-thigh area). We haven’t done these tests on the lymph nodes yet b/c Kane says we’ve been treating the tumors systemically and we wouldn’t treat me any different if they were cancerous. So I guess there just wasn’t a need to know before now.
When we return from our travels in mid-July, I’ll have a PET and CT scan done. If they reveal questionable information, then we’ll go in either laproscopically or endoscopically to biopsy a sample from the lymph nodes. If they come back as cancerous, I won’t be a candidate for transplantation and we’ll skip on ahead to option number 2 below. If they aren’t cancerous, then I’ll meet with Everson and pursue the transplantation option further. S C A R Y! But as Honey always says, “don’t worry about it until we have something to worry about.” AKA: cross that bridge when/if we come to it.

2. Frank and Carolyn are friends with a couple in Hilton Head who have been affected by cancer. Not just any cancer, mind you. The wife has cholangiocarcinoma just like me! SMALL WORLD! Apparently, she’s had some success in killing her tumor (not shrinking or removing it) with radiation. I am in the process of swapping emails with her to learn more about her story. In the meantime, we are looking into trying some radiation in the foreseeable future. We may end up going back to MD Anderson in Houston b/c they have a proton radiation machine which is one of maybe three in the whole country. I’m not sure how it’s so special but I’ve got my Number One Researcher (Frank) investigating that for us. Yes, we could essentially do radiation and then a transplant later on if it comes to that. But we’re not making any decisions until we return from our vacation.

3. Chemoembolization is on hold now as we explore these other two options some more. I want to see a new image of my tumors. I’m not convinced that the previous procedure did anything productive to them. I’m willing to give it another chance but the side effects and recovery were terrible last time and may not be worth it if there are alternatives.

4. In the meantime, I am getting in touch with the Integrative Medicine department at UCH to explore complimentary (commonly referred to alternative, but for me it’s not a matter of “instead of…” it’s a matter of “along with…”) techniques such as acupuncture, nutrition/dietary changes, chinese herbs, massage therapy, etc. I’ve heard a lot of success stories associated with these types of treatments and I think I’ve reached a point where it can only HELP and not hurt my efforts.

As I was tooling around on the American Cancer Society’s webpage today, looking mostly for information on head scarves and where to find a free pattern (I got lots of cool fabrics yesterday!), I stumbled across a whole page outlining the details of a rarely-discussed side effect I’ve been experiencing called CHEMOBRAIN. It’s such a relief to discover that it is real, that I’m not going crazy, and that I really am getting dumber by the minute! I’ve always been a fairly intelligent person but the past few months my mind’s been slipping! My great memory has failed me time and again. Like last night I was trying desperately to remember the explaination my doctor gave me three months ago about what a PET scan is and why I haven’t had or don’t need one. Usually, err…pre-cancer, that’s a detail I would’ve remembered with extreme clarity. Of course, Honey couldn’t remember the answer either but his excuse runs deeper in his chromosomes: he can’t help it — he’s a man!

So here’re some of the highlights on chemobrain from the ACS webby:

Here are just a few examples of what patients have experienced and defined as chemobrain:
* memory lapses (check!)
* trouble concentrating (ADD, anyone?!)
* being unable to remember details (Did I remember to put on pants today?)
* changes in the ability to do more than one thing at a time (check!)
* having trouble remembering common words. (”onomono-wha?“)

Doctors and researchers call chemobrain “mild cognitive impairment” and define it as the inability to remember certain things, complete certain tasks, or learn new skills.

Yes, chemobrain is real, but its cause is unknown. How often it happens, what may trigger it, or what can be done to prevent it, is also unknown.

At this time, medical professionals do not know what causes chemobrain. It could be any of these things:
* the cancer itself
* chemotherapy drugs
* other drugs used as part of treatment (such as anti-nausea or pain medicines)
* patient age
* stress
* low blood counts
* depression
* fatigue
* hormone changes
(Well, at least they’ve got it narrowed down!)

The website further suggests doing word puzzles, memory games or taking a class to keep the brain stimulated (does watching 10 straight hours of TV help?). Furthermore, they suggest eating veggies, getting exercise, get adequate rest and don’t try to multi-task. One of the most important pieces of advice they offer is to keep a detailed dayplanner. So tonight, when I go to WalMart to get some more fabric and thread so I can start stitching together my own head scarves, I think I’ll swing by the fancy dayplanner section to get a big fat dealy to help me keep everything straight. I have a palm pilot but I have trouble keeping it updated and synced with what I add to my laptop every day so I think I’ll just revert to the ol’ paper standard.

In the meantime, if I forget simple things or you see me jump from task to task in the middle of them, please excuse me. It’s just the chemobrain talking!

I’ve begun taking showers at night before bed now, to help my scalp shed all the loose bits that have detatched from my scalp throughout the day. Despite my uber-short new cut, last night I lost enough hair in the shower to clog up the drain. It sort of freaked me out. I used to think that people going through chemo who end up completely bald must be really very sick and/or very near the end of their lives. But as I started losing my hair, I realized that’s not true. The baldness is just a side effect of drugs that are working hard on kicking the cancer’s butt. That helped me switch my attitude from “woe is me, I’m losing my hair so I must be really sick” to “this is just an outward sign to people that I’m fighting for my life.” And then I thought of our trip to the south east coast in July and how hot and sweaty I would be with my full head of thick hair. That’s the silver lining I thought of as I cleaned out the drain from what felt like a half pound of 1/2″ long hairs. I think I might have Honey shave me shorter tonight so I don’t keep experiencing that (not to mention the hairs that, no matter how hard or long I rinse, I cannot get off my body! Yuck!).

I’d like to have a couple wigs, though. Maybe one or two “for real” wigs that look like normal hair and then maybe a sassy blue one or a funky purple just for fun. But I don’t know where to start or how to shop for a wig. Any survivors out there have any suggestions or advise for me? Of course I googled “wigs” but was overwhelmed by the plethora of options available to me! So far, it seems that Racquel Welch has usurped the wig industry.

Yesterday, I went to a hot rod car show with Honey and his dad. We did a lot of walking out side and I really enjoyed myself. But by the time I got home, my hand-foot-syndrome returned in full force. You can read all the details of this delightfully painful side effect here or check out the summary below:

Palmar-Plantar Erythrodysesthesia is a side effect, which can occur with several types of chemotherapy or biologic therapy drugs used to treat cancer…Following administration of chemotherapy, small amounts of drug leak out of very small blood vessels called capillaries in the palms of the hands and soles of the feet. Exposure of your hands and feet to heat as well as friction on your palms and soles increases the amount of drug in the capillaries and increases the amount of drug leakage. This leakage of drug results in redness, tenderness, and possibly peeling of the palms and soles…Hand-foot syndrome can be uncomfortable and can interfere with your ability to carry out normal activities.

Thankfully, I’m not red and peeling on my hands or feet but my feet feel like they are on fire and rubbing on sand paper with every step I take while my hands really hurt when I grab hold or try to turn something like a bottle cap or whatnot. I guess all the walking yesterday aggravated my feet and today I am really paying for it. It’s a day on the sofa for me. I’d really rather be out in my garden, putting my new butternut squash plant in the ground. Maybe tomorrow.