The Hole

Tomorrow will mark the second anniversary of my mother's death.

It seems there should be something else to say about that.

There isn't.

Oddly, in a way, I'm glad she is gone and not having to deal with my illness and treatment. What a horrible thing to say, but also what a horrible thing to experience, watching your child being ill, unable to make it better, being restricted by your own illness, and having no assurance of a positive outcome.

She would want to be here to help, but due to her own illness, which she battled quite bravely and successfully for more years than anticipated, she wouldn't have the strength to really help run this family. In good health, she was a whirlwind. But her last two or three years were different, and she tired quickly.

The boys loved her. She was a great cook. As Aidan said at her funeral, "She out jammed Smucker's."

As a family, we are working to incorporate bits and pieces of her into our present lives. We've a few select pieces of furniture that were special to her that we are making work with out stuff; I have some of her kitchen utensils that have been in my life as long as I can remember.

The hole her passing left in my life is not nearly as gaping as it was two, even one, year ago. Clearly, healing is taking place.

There are days when I really want my mommy. But more so now, it's a relief to know that my illness and treatment won't cause her any suffering.

In her honor, the boys and I will be making "grandma food" for dinner tomorrow. The specifics haven't been worked out. She wasn't a gourmet cook. Her food was every-day, down home cooking. We all loved it. Wish I could find her recipe for Swedish Tea Ring. How could that just disappear?

I think the vote is tied for "Burger Bean Cups" and "Hamburger Stroganoff." Like I said, nothing fancy. But her love language sure was food. And her famous coffee cake, which I won't try to make more healthy. If I had rhubarb, I'd make a rhubarb pie. Maybe Aidan and I will make some strawberry jam, just a little batch, this weekend. Of course, buying strawberries out of season will cause her to turn in her grave (or churn her ashes).

One skill I wish I'd learned from her is the ability to open a cupboard, fridge, freezer, or pantry and immediately know what can be made from the odd ingredients in there. Heck, just being able to remember what is behind closed doors would be a good place to start. I don't ever remember her saying, "I have to run to the store to get...X...so I can make...Y...." She'd just make do and it would work out. Not quite so much for me. I can barely remember what we have in the house, what I'd planned to make with it, and I almost always am missing some ingredient.

Meanwhile, we just keep plugging along, missing her, and making do without her in other ways.

I love and miss you, Mom.

Obnoxious favor to ask

I've been slacker mom this school year. In fact, before the first day, I wrote an email to Tynan's teachers basically saying, "He's in your hands this year. Don't screw him up too much."

Now, his school is doing a jump rope marathon to raise funds for Haiti relief efforts. Usually this February event is to raise funds for the American Heart Association.

Anyway, the whole jump rope thing has been quite traumatic for Tynan, who has never learned to jump rope. I know he's not alone in this, as at least two of his close relatives can't either. For the record, I am not one of them, and this challenge seems to come from the last half of his last name.....

Anyway, after being humiliated in school, a gnarly email exchange between me and his gym teacher, and quite a few hours in the cold garage with a sometimes less than sympathetic older brother (one of which CAN jump rope), he's gotten up his nerve to do the dang marathon (I was just going to take him out of school, since the gym teacher said he couldn't hoola-hoop for Haiti--which I, personally, think has a better ring to it).

So, if anyone would like to sponsor him, let me know. It would be greatly appreciated. He has shed more tears over this damn jump roping requirement than anything else involved with school, and believe me, he has tears a-plenty where school is concerned.

Round 2, session 2, day 4

Hair is starting to fall out. Maybe this time I'll just pull it all out in anger? Or should I be more dignified?

Round 2, session 2, day 2

Hangover has begun. The only thing that helps is protein. But nothing sounds good except for bacon and sausage patties. I need to make something for the fam to take to a Superbowl party.

Louis can't help. He's doing taxes. Must get our refund before money runs out. Yes, he's back at work, but his paychecks will be less than 1/2 of what his previous paychecks were. My take home pay is significantly less, due to increased health insurance and vastly increased flex funds taken out.

So much for remodelling the bathroom (have I spoken here as to how stupid the layout in our otherwise large bathroom is?) and getting replacement windows upstairs and some more electrical outlets.


Allow me to digress about our bathroom. We only have one. Mostly, that's not a problem. Maybe, someday, when we remodel the garage into "basement replacement living space", we'll put another bathroom in out there. But maybe not. It's not like people are knocking down the doors to clean bathrooms here, so I see no real need to have more than one. It's not like the boys are fighting over who needs the mirror. And, the people who lived here before had 3 girls and 2 boys, and they managed with the extra sink in the laundry room.

But the layout is stupid. There's a tub. And a toilet right next to it! So, when one takes a bath, one's head is mere inches from the toilet seat. Not too bad since I figured out how to use the steamer with some bleach to clean around the toilet, but really, not a good configuration for a house with 4 males. I mitigate the potential smell by candles. But still, it's not what I would choose. Then there's the shower stall. It's tiny. It's old. I've always hated shower stalls. It's tiny. People over a certain height can't bend over and wash their feet. It's tiny. There's no place to really put shampoo or anything, except these handrails that run around the sides. I hate it. I hate cleaning it. The kids hate cleaning it. It's just stupid. But we couldn't put a large one in because the sink is next to it.

In my dream, and with money not an option, I''d replace the tub and add in a shower, but still manage to keep the window over the tub. The tub would be insulated so the bathwater stays warm much longer. Maybe I'd get one of those walk in tubs for the elderly that doubles as a shower stall. Then, I'd put the toilet over where the shower stall is now, maybe with some sort of little half wall to block it from view.

and I'd get rid of the mirror on the back of the door that is directly across from the tub. Right now, I hand a sheet over it. Who wants to look at themselves in a full length mirror while they bathe? Certainly not I.

Now back to food for the superbowl party....

Louis can't help, he's doing taxes. Aidan can't help, he's puking. Nathan is still in bed at 1:08 pm. I like to let him sleep some times. I firmly believe that nature has designed teen boys to sleep during the day and be up at night. Plus, I think he's growing again.

Since Aidan is puking, we've asked the friends where Tynan spent the night if he could stay there longer today. So, Tynan can't help.

So, it's up to me. Maybe a coffee cake.

Need ideas for blog entries

What to write about...I'm feeling blank.....what do you want to hear about? How can I amuse you?

Round 2, session 2, day 1

Good infusion today. Got to watch two episodes of Big Love and came home to a wonderfully tidy and clean house. I love the three friends who have helped with that through all of this more than Reese's Peanut Butter cups. (More evidence polygamy would work for me. And I really truly do appreciate them and would make sure they knew it...)

My blood counts were "good." My hemoglobin was lower than last time around. It's already dropped to 9.2. If I start to feel bad, there are orders written for an "iron shot."

The infusion nurse told me to expect to feel much worse this time around. Last round, different cocktail, the first two sessions left me feeling the crappiest. The last two left me the most fatigued. The two in the middle were ::meh::. Not too much hangover feeling, tolerable fatigue, mostly just bone and joint pain and neuropathy. This time, I guess all the effects accumulate. It'll all be over sooner rather than later--I'm almost halfway. This was my second of two infusions, but until the crappy stage passes, I won't consider it half over. I'll still have those crappy days after the last infusion, and last time around, I felt crappy longer after the last than after the first and second.

Gotta love pharmaceuticals. Although the cost can be exorbitant at times, they make life pretty damn good. I no longer can remember why I didn't used to like them...

Why I like my kids' friends

Teen age boys frequently get a bad rap. Some days, it would be really easy to not have much good to say about them. They tend to smell, although that lessens the older they get. They can certainly be noisy. And sometimes they can act brain damaged. Although their bodies may look adult and mature, and although they verbalize that they are mature and ready to take on the world, as the author of this website points out, adolescence is "a time when brain changes can result in high risk behaviors, addiction, vulnerability, and mental illness." So, yes, teens are a little crazy. Teen boys have their own type of craziness. Seeing as there is a preponderance of males in my family, things get a little crazy here at times. Add in other people's teen boys and crazy just might not be the most precise word. Lunatic? Demented? Maniacal?

Yet, in general, these are wonderful people.

One thing about adolescents is that they sometimes have a harder time than adults stifling that voice in their head. Oops! Out pop things that adults might never say. Oh, we'd think it, but we've learned (mostly) to keep those ideas in our heads. Some of us are better at this than others. I am particularly challenged in this realm, but I still do a better job than most teens.

So why do I like my kids' friends so much? Because they are honestly good people. And also because they joke with me about cancer...."Oh, yeh, cancer lady says we have to...how can we say no?"

I also like them because they aren't freaked out by my baldness or my being in bed or in pajamas in the middle of the day. If my bedroom door is open, some of them will even just waltz right in, sit on the foot of the bed, and start talking. They are willing to be around us, which is more than I can say about a handful of my adult friends (only a small handful....but still).

I like them because they laugh. A lot.

I like them because they are smart and capable critical thinkers. They have fixed more than one computer issue for me, as well as helped figure out car troubles and solve other problems.

I like them because they are capable of interesting conversations. Sure, a lot of their talk centers on girls and sports, but given the opportunity, they also have a lot to say about life, love, family, politics, the future, religion, literature, film, and society in general.

I like them because they are strong. There's nothing like having strong people around to do things that require strength;)

I like them because they take out the trash.

I like them because they are competitive. They push each other to greater heights (sometimes greater heights of stupidity).

I like them because they are good friends. For the most part, my boys have been friends with their friends for quite a few years. We were looking at soccer pictures as we were packing to move in April and May of last year, and the same faces kept popping up over and over. Nathan has played soccer with some of his friends since he was 7. Aidan used to nap with one of his friends when they were toddlers and I babysat the other boy.

I like them because even when they've been in trouble with the law, it's all been in the name of good fun. Pardon me for thinking getting arrested for a snowball fight or skateboarding in the university library aren't significant crimes.

I like them because they are willing to hang out in our less than luxurious home.

I like them because, for the most part, they treat Tynan pretty well and let him hang out with them. In fact, most of them probably treat him better than his own brothers do. This is a mixed blessing. See above about that inability to filter what they are thinking from what they are saying. Hence, Tynan has had an education many grade school age kids haven't had.

I like them because they don't smoke and drink. Let's face it kids, we can smell the smoke on you. I don't smell it on these kids.

I like them because they like good music. I like (some) of them because they like less popular, more traditional music.

I like them because they play games. Most of the games are video games, but on occasion, I find the board games have been rearranged, which indicates they had them out. See above about competitiveness.

I like them because they were so very supportive and concerned about Aidan when he got hurt. Phone calls, text messages, rides. One was even so kind that he rode his bike to the hospital and then came home with us, staying by Aidan's side for a day and a half, tending to his every need.

I like them because they infuse energy into our home. Unless they are asleep, the house vibrates with their energy.

I like them because they will also hang out with the rest of the family, watching a movie, instead of isolating themselves in the family room.

I like them because they have household skillz are aren't afraid to use them. I never have to ask twice to get the table set, laundry switched over, dishwasher emptied.

I especially like them because they've been such good support for my boys while I've been in treatment. They've been good support for me, too.

Heck, I like them almost as much as I like my own kids. It's because my kids are so likable that they've chosen such good friends.

Neuropathy

Since Amy (Pancake Goddess, not my BG Homie Amy) asked....Neuropathy is nerve damage. There are many causes of neuropathy, but in the case of cancer, most people who undergo chemo experience it to one degree or another. There is no one experience that is exactly like another, although it is my understanding that some chemo cocktails share similarities. Many people complain about numbness in their toes. Some equate it to being wrapped in bubble wrap. I don't experience that analogy so much. I do have numbness in my toes, but now it feels more like they have string wrapped around their bases. A friend who has neuropathy in her hands says it feels like she's typing with her toes. I had some hand neuropathy last time around with chemo. It tended not to stay...it would decrease over the three week cycle. It made for clumsy typing, difficulty with zippers, and I was constantly having the dry erase markers fly out of my hand while teaching.

Numbness is an annoyance, especially for people whose immune systems are already compromised due to chemo. After all, we are supposed to know when we injure ourselves, which isn't always possible when you aren't able to feel 100% of sensations. Midway through my last rounds of chemo, I got a hangnail on one of my fingers, and it was red, swollen, and pus filled before I even noticed anything was wrong. That was a good 10 days on antibiotics.

However, neuropathic pain, in my experience, is much, much worse. There is no good way to treat nerve pain, especially if it doesn't stay localized. One of my friends says the bottoms of her feet are so sensitive that she can feel each fiber in the carpet. My toes get so sensitive to pressure that there are only certain types of socks I can wear. At times, my bedding is so uncomfortable, I can't sleep. At other times, my feet feel ice cold. So cold they are almost burning, yet to the touch, they are perfectly fine and normally warm. Right now, I'm wearing wool socks, have my feet under a mound of blankets, yet my feet feel as cold as if I were standing in snow. The only thing that warms them up is hot water. Even using my electric blanket doesn't help. Maybe a heating pad would, but since I also have numbness, that might not be such a great idea.

When I was taking taxotere as part of my cocktail, the pain was quite intense. I likened to to "pain socks." It was as if I were wearing socks of pain...just in that area, pain like my ankles and feet were being crushed. Taxotere also causes muscle pain, and of course, I had that, too. I wasn't really able to distinguish between muscle and bone pain. At times it felt like someone was crushing my long bones of the leg with those crushers used for eating crab legs. I don't think I'll ever be able to eat crab legs again. My joints felt swollen. I'd look at my knees expecting to see them red and swollen, but no. When I'd sit, for instance while driving, the pressure on the backs of my thighs would make my legs hurt like the blood wasn't circulating correctly. My hips have hurt every single day, multiple times. I can't get comfortable. It's like there's always too much pressure somewhere and I can feel my hip bones grinding.

Now, though, with my new cocktail, some of that is decreasing (mostly it's just hip pain now), but now I have the sensation of being stabbed with a large flat head screwdriver...heated to glowing red. These sensations come and go. But they are strong enough to make me gasp. I certainly can't sit still through them. This is just from mid shin down.

Or sometimes, it feels like there's a vibration inside me. Last night, I could have sworn I was standing on my cell phone set to vibrate...and it was vibrating. However, I wasn't standing. And I was talking on my phone at the time.

Another aspect of neuropathy is weakness. Hand weakness is the most irritating for me. Having to have my nine year old open a jar for me is unheard of! I couldn't pull the white plastic pull tab off the frozen orange juice concentrate the other day. Last semester, my hand would get so tired when I was grading that I couldn't write. It would burn. Let's think about that...there isn't much actually writing involved in commenting on a paper at any one time...at least the way I do it. Five or six words, then read more, one more five or six word comment....rarely more than a few sentences at the end. Sometimes I'll be standing, talking to someone who has come to drop off a meal or in line at the grocery store, and suddenly I'll realize my legs are starting to shake. It's a sweeping feeling of weakness. The closest I can compare it to is sometimes when I've had a cold or other minor illness, maybe a little feverish, and ignored it. Then suddenly I just feel like I can't go on and I just need to sit down. Only then I know I can continue. Now, I'm not so sure.

What can be done? Hot baths helped a lot (and now I've been told I can't take them). Codeine helps, somewhat. Vicodin sometimes helps. Tylenol helps more than Motrin. Daylight helps. Somehow, my body knows that it is evening and night. Right now, at 1:30 in the afternoon, I have that annoying cold sensation in my feet, but that's all. By 9:00 this evening, I'll have pain. However, it rarely bothers me after I've managed to get to sleep. If I can sleep, if I wake up in the middle of the night, I rarely have pain. If I don't sleep, it hurts all night. I don't think there has been one pain free day since the second week of August when I got my first infusion. I was still having significant taxotere pain until the end of the steroids from my last infusion. Then the red-hot screwdrivers started. However, I'd take them over the taxotere crab leg utensil pain.

Does this answer your question, Amy?

Side Effects Be Damned

One potential side effect of having lymph nodes removed is a condition known as lymphedema. It can effect anywhere from 10-20% of patients. Radiation treatments increase the risk of lymphedema. I'm not sure, so don't cite me, but either up to 40% of patients get it or the risk of getting it is increased by 40% or something like that...the number 40 is involved.

One of the side effects of certain chemotherapy treatments is also lymphedema.

There doesn't seem to be consensus as to what determines a true diagnosis of lymphedema....2 cm difference in circumference between the limbs? 4 cm? 2 inches?

My left arm, the one that had lymph nodes removed, is today 3-4 cm larger than my right. This is sucky news. Here I sit with my arm wrapped in compression bandages, padding, a special cotton sleeve thingie like one would put under a cast....

I was expecting to get a compression sleeve, standard fare given to breast cancer patients. I even knew what color I wanted. I'd researched some super cool ones on line and found a distributor in Findlay.

The OT I saw today, supposedly one of the best in the area, thinks my swelling is probably caused by my chemo and should go away, but that in all likelihood it will first get worse, so no compression sleeve for me. Instead, I get these cool bandages that make me look like a burn victim or injury patient.

She also gave me some lymph draining massage techniques and exercises to do....daily, several times, for the rest of my life.

And that's the kicker. Cancer never quits. Like so many chronic conditions, it's a "for the rest of your life" thing.

For the rest of my life, I have to be concerned with injury to my left arm and hand. I have to be concerned about mosquito bites for god's sake. Even a paper cut could be problematic. This is all sort of just hitting me now. I'm supposed to carry band aids and antibiotic ointment with me in case I nick a cuticle or get a paper cut. Some therapists even recommend avoiding hot showers, hot baths, the sun (because it is warming)....I love the warmth of the sun. I detest cold. I meditate in my bath. I doubt I will ever be good enough at meditating to do it in a cool bath. Hell no, not an option. I don't do cool baths. I'd rather not bathe. I'd rather not shower.

This is all rather depressing. Highly depressing. The most depressed I've been since finding out I had to do extra chemo. Don't want to get out of bed depressing. Want to eat Pringles and Lawson's Chip Dip depressing.

Hopefully the OT is right and the swelling will resolve itself when I'm finished with chemo because I'm pissed again.

Good Beyond Words

I get fixated on certain foods and can't get enough of them. Right now, those foods are Naslada Bistro's Shopska salad and Layered Tomato. I could eat the Layered Tomato all day, every day.

In fact, I think I shall go to the store and make both right now, even though I had both for lunch.