Symptoms, The Rundown, Goodness, Bananas

Ten days have passed since my first chemo infusion. I have struggled with the motivation to update the blog because of how very un-entertaining my post-chemo days have been. But one reader said that my honesty was demystifying canser, so I guess that can serve as my goal.

Unfortunately for the modern blog reader, there really aren't any pictures to share. If there were pictures to share, they would be of me staying in my pajamas all day and in general looking urpy.

urp·y

[ur-pee] 

adjective, urp·i·er, urp·i·est. Informal.

1. what one feels prior to spewing the contents of one's stomach into the toilet or other receptacle: Raw fish and metamucil make me urpy.              

verb, to urpy. Also informal.
2. short for urpylala, the actual spewing of the contents of one's stomach into the toilet or other receptacle: Quick, hand me that crockery before I urpy.

In one post, I listed not having a job as a blessing, and I still feel that way to an extent. But before, when I heard stories of canser patients who worked every day all through chemo, I couldn't understand how it would ever be the preferred arrangement. Now I do. At this point, I would gladly welcome a distraction from self, sloth and urpiness, in whatever form.

I had to give up my volunteer duties at the reds' school because of the germiness of kindergarteners. So I just signed up to be a volunteer for the Senior Mission Training Center. Senior couples who are learning Italian will call and skype me to practice their language and teaching skills. It is a wonderful way for me to get outside myself without having to get outside my house! I'm really looking forward to it!

Symptom Watch (for the Just the Facts, Ma'am Reader):

• deeply satisfying sleep with crazy dreams 
• sudden onset severe sleepiness followed by utter insomnia 
• joint pain 
• loose joints 
• flesh tenderness to the touch
• bone pain---like having a throbbing headache, but in the spine or shin
• inexplicably watery eyes 
• periods of wigged out vision 
• loss of appetite and weight loss 
• return of appetite and weight gain 
• being out of breath for no reason 
• compromised sweet tooth (sweet things don't taste as good anymore) 
• frequent urination 
• infrequent and debilitating bowel activity 
• mouth sores 
• nausea and general urpiness 

The Complete Rundown (for the Gimme All the Dirt Reader)
My first dose of chemo, described in my previous post, was on Wednesday February 20th. Although I was told I would feel fine on Wednesday and Thursday, and that Friday and Saturday would be my tough days, the opposite was true for me. I relied heavily on anti-nausea meds as early as a few hours after chemo. I still did my things though. Play practice in the afternoon and YW in the evening.

Thursday I went to Enloe and got an injection of something called Neulasta, right into my belly. I wondered why they didn't inject it into my port. The nurse, Bev, said it is supposed to go into your fat tissues because it expands there and more effectively ends up in your bone marrow, where it then stimulates the production of white blood cells, the very things depleted by chemo. The Scoobs met me at the appointment so she could introduce me to Bev, who had been her nurse, too. Bev has an LDS background, is the mother of adult children, lives in Magalia and commutes down to Chico. I'll be seeing her for my Neulasta fix the day after every dose of chemo, and I look forward to getting to know her better. The main side effect of the injection is bone pain, which I first experienced as all the flesh of my back being extremely tender to the touch, but later morphed into the headache-in-my-spine phenomenon. That night I felt well enough to go to Sierra's basket ball game, root like a banshee for the team, and give the refs heck.

Friday I felt just well enough to attend a dinner put on by my school board to show appreciation for staff. It was fun to spruce up, show off my new hair cut, and socialize with the good people in charge of educating my reds. I find I am more bold with my fashion and accessory choices now that I have pink hair.

Saturday I felt great. I woke up early, cleaned, puttered in the yard, napped, watched movies with the kids. It seemed just like a Saturday should: equal parts productivity and recreation.

Sunday we had ward conference. Many people had seen my article in the paper and expressed condolences, congratulations and so forth. I was especially struck by the words of my stake president, Drake Brown, whose wife Cindy also has breast canser. I remarked that my experience so far has opened my eyes to the amazing goodness in others. He said, "Yes, Cindy calls it 'the best club you'd never want to join.' I see a book title in this. Feel free to submit logo and cover art for consideration!

Monday, I read the book that was to be discussed in my book club on Thursday. It is Corrie Ten Boom's The Hiding Place, "The extraordinary adventure of one courageous Christian woman who became a militant heroine of the anti-Nazi underground." It was incredibly inspirational. Click here to learn more about her and the miracles that attended her work. I literally read all day, eating little and never getting dressed. Although the book itself was a boon, that behavior was not, and I felt terribly guilty for not accomplishing anything of value for the family.

Tuesday I set out to Do More, Be More! So I went to the mall to buy a purse. Before you laugh, know this: When I graduated from a diaper bag three years ago or so, I rebelled against purses in general and used only a wristlet large enough for my license, debit card and phone. But now I find myself in need of portable water, lotion, hand sanitizer, kleenex, gum/mints, and occasional medications. So it really was on my to-do list to get a purse at the mall---serious as canser. I found a great one, and did lots of other browsing as well. Next stop was Wally World for other necessities. There too I meandered, only to realize that as soon as I got home it was time to go to my board meeting. After the board meeting, I tried to help Sierra with her Algebra, only to find my vision was such that, although I could see just fine looking around the room, I couldn't decipher the problems on the page. I ended up shipping her off to my good friend Julie, who speaks fluent math. Thank you, Julie! Anyway, that was the first day I didn't nap, and I paid a price for it. I ended up crashing and burning with headache, nausea and extreme yet sleepless fatigue.

Wednesday I got an organization itch and totally overhauled our downstairs bathroom, complete with labels for every drawer and compartment. I knew to take it easy afterward. When I went to get the kids from the bus, Sophie complained of feeling bad, turned down my offer of a cookie at Great Harvest, and sprouted a fever. I held her close and tended her in the way a mother does, until it occurred to me I am immuno-suppressed and probably should keep my distance. I texted the Scoobs:

In lieu of a grandparent, I have my sister Stacy close by, and she responded immediately to my fearful plea. I felt horrible "pawning off" Sophie, but that's just what I did. I hope she saw it as a special sleepover with Aunt Stacy rather than categorical rejection from her mother. Amazingly, Stacy was able to take the day off work Thursday, take Sophie to the doctor and get her safely dosed up with antibiotics before returning her to us. In the mean time, Dr. Mazj put me on an antibiotic as well, and I really am relying on these miracle drugs to handle the germs that are no doubt being shared, despite Sophie's best efforts to cough into her elbow.

The protocol if I develop a fever of even 100 degrees is to report immediately to the nearest ER for admittance. Go antibiotics, go!

Despite being Sophieless and paranoid Wednesday, I did take Knox to play practice, take Sierra to the high school for a test to get into honors English next year, and attend my boy's first court of honor, which was nothing short of awesome. Knox received his scout badge, we played a family feud style quiz game where parents tested their knowledge of the scout handbook against that of the scouts (the scouts won), and watched a video of the last few months' adventures in scout activities. Knox has great things to look forward to as a scout!

At some point in the middle of all that, I went to CVS to get masks like the ones they hand out in doctor's waiting rooms. There was only one kind available, so I bought it. When I got to the van and tried it on, it covered nearly my entire face. This mask was intended for burly dry-wallers, I think, not declining canser patients. Not only would it have prevented me from catching Sophie's air born germs, it would've prevented me from seeing her altogether!

Thursday I had the first of many dentist appointments at a very impressive facility to which Dr. Mazj referred me. (Incidentally, the facility was teeming with available germ masks, so I now have a hefty supply that are vision friendly.) I have a missing crown, and Dr. Mazj considers it a medical necessity to tidy up the inside of my mouth in preparation for the onset of mouth sores. I have only had two very mild mouth sores so far. Although the facility was modern and beautiful and the dental workers lovely, it did take a very long time for this initial exam, and I ended up curiously exhausted, considering all I had done was sit in a chair and visit with Shannon, the dental assistant who lives in Yuba City, commutes to Paradise and mothers a sixteen year old who is "finally starting to be nice again" (there is hope for all of us!).

On the way home, I stopped at the pharmacy to pick up the antibiotic Dr. Mazj wanted me to begin immediately, only to learn that I have a six prescription limit per month. I was amazed to realize I have indeed filled six prescriptions in one calendar month---more than the last 20 years combined, I'm sure. In the end, they made an exception because the next day (today) was the start of a new month and after all, I couldn't get my child out of hock until we both had our first high doses of the wonder drug. When I got home, I collapsed immediately, and did not attend Sierra's basketball game, which I later learned was a real nail-biter that they ended up winning by a nose! I also did not attend the "Hiding Place" book group that I'd been so looking forward to. :(

Friday (today) I was again still pajama clad until it was time to pick up the big kids. I rested much and cared for my Soph, who was still too sick to be at school, but apparently not too sick to play at the park with friends, which was what rounded out our afternoon. I then attended a baby shower for our YW President, which was also attended by The Scoobs and Shannon Guadagnin, yet another beautiful person with canser. In what I'm sure was a first for a baby shower game, the three of us stood and displayed our port sites for comparison.


Goodness Watch (though I can't possibly track all the kind acts, here are some that stick in mind):

• My husband has created a new category of amazing. He has been the one to get the kids ready for school each morning, making sure to cook them breakfast first. He has been making healthful, delicious and beautifully presented dinners. He has been making sure the dishes are done each morning before he leaves for work. He has been running errands. He has been taking Sierra to her singing lessons and Knox to Jiu-jitzu. He has been forgiving my lack in productivity. And all this, in addition to keeping up with his many professional and scholarly responsibilities. He is due to send off his Master's project by April 8th. He has MUCH on his plate, and is speaking my love language in spades. I cannot express how grateful I am that I have him by my side on this journey.
• Cindy Brown, the aforementioned stake president's wife, called and expressed her love and strength and tenderness. It is a fine club indeed that we belong to. She is wonderful!
• A random Chico Enterprise-Record reader sent me a letter in the mail, wishing me the best, recounting her east coast son's journey with canser, and telling me that I will be in her prayers morning and night, which touched me deeply. I have decided I would like to carry on a correspondence with this sweet 70something woman. She has beautiful, curling cursive, and has refreshed my love of the 'old fashioned' communication that is letter writing. I've also decided I better change my byline picture. She said, "From your picture, you look to be about my son's age. He's fifty-two." Ha!
• Another treat in the mail was a set of pictures and scrawls made by my two grand nieces, ages 3 and 1, with encouraging translations by their awesome mom. Also enclosed was a monetary gift from said mom (my niece) and her husband. They said they discussed how they might be able to help from afar, and decided gas money for the yellow brick road to the Wizard of Mazj was just the ticket. And it was! Thank you!
• The Young Women, who were having a slumber party at the aforementioned pregnant YW president's house, heart attacked me! They put heart decals all over my van and left a tub of goodies---a beautiful scarf, a couple of magazines, a luxurious lip balm among them---on my porch. How spoiled I felt!
• Stacy! My incredibly generous, family-first sister has a job that I like to call 'big and important.' She's the principal for several special education schools and programs in the county. That she was willing and able to take off work at a moment's notice to not just care for my fevered and coughing Sophie, but also take her to the doctor and pick up her prescriptions, is awe-inspiring to say the least. I don't know what I would have done without her.
• My dear friend Suzie swung by late-ish one night with the crazy notion she could whisk me off to Jon and Bon's for our favorite fro-yo. She was right!
• I got a visit from sweet Lynn Powell just tonight. She brought goodies and a book of inspirational quotes and heart felt card and more than one warm hug. 
• And for the last one, I need more than just a bullet point . . . 

As I was getting ready to leave the park this afternoon, my friend Robin said very casually, "Hey before you go . . . a bunch of us chipped in and bought you a freezer for your garage so we have a place to put all the freezer meals we'll be providing."

What?! I couldn't even process this. I have been shaking my head in disbelief each time I have thought of it since that moment. Imagine! My existing freezer is not of a capacity great enough to accommodate the provisions of my friends. They saw this as a need worth fulfilling. I can't even begin to express my incredulity at being the object of such over the top generosity. I honestly don't understand it.

I could think of nothing appropriate to say, so I said, "Man, I should've gotten canser a long time ago!"

And then there's this: Something I remember about my Grandpa Call is that, having come up through the Depression, he considered having bananas a sign of bounty. In his golden age, he always kept plenty of bananas on hand, not just because he liked their taste, but because they were a sign of his prosperity---he had arrived! I can't remember if I've ever shared this with my friends, but I feel about a freezer in the garage the same way my grandpa felt about bananas. So my task for tomorrow is to clear a space in the garage, because apparently I, too, have arrived.

I once remarked that I don't say about canser "Why me?" But I do say about this benevolence "Why me?" 

My stated goal for this post was to demystify canser. Perhaps my ramblings about symptoms and other hullabaloo made strides toward that end. But there is no demystifying the Goodness of the people in my world. I don't know how to thank them. I don't know how to graciously receive such a magnanimous gift. I don't know how to make sense of their generosity. But I am grateful and amazed.