Tuesday, November 25, 2014

Snippets Before the Holiday - Life with Cancer

Have you liked my facebook page?  I've been posting little snippets of my life with cancer there, and here is what you have missed:

November 24, 2014 - Cleaning for Thanksgiving

Why did I spend hours today cleaning my closet when I have guests coming for Thanksgiving? 

ADD, that's why. 

I'd decided to clean off my living room coat rack so people could use it, and one item hanging there was my sweater.  It belonged in my closet, of course, so I took it to my bedroom. I grabbed a hanger, put the sweater on it,  but had to jam it in, there was barely room in the closet, and I realized there were a lot of empty hangers taking up too much space.

Okay, I'll take them out, that'll just take a second. Then I noticed all those sleeveless, sheer things in there.  It's too cold to wear them this time of year even with a sweater so I might as well store them in my summer bin, which has been conveniently left on the floor of my bedroom. I began folding them, neatly. Oh look, so many sweaters are in the closet! I'd forgotten about them. They're all on the top where I can't reach, no wonder I forgot.  Why not move them down so I can access them? Maybe we can lower the heating bill if I have something warmer to wear.   I'll put them down on the low rack and move my skirts and things I wear less frequently up high.

Hmm....I also have more tees than I thought, which I rarely wear,  so I can put them in a dresser drawer to make more room.  Nice.  I have lots of shirts I can layer with the sweaters, but if I'm going to layer, I need to know what color everything is, so I have to organize by shade - which means everything has to be taken out of the closet and rearranged.  So, it all comes out and covers my bed, and since I bought a bunch of flocked hangers, all my clothing can go on those and nothing will fall off, so I take each piece of clothing and give it a new hanger.  Wow, do I have a TON of dry-cleaning hangers leftover!  Well, my husband can take them to the thrift store, I'll just bag them up. 

Suddenly, I realized I've been in here 3 hours and people are coming over and I should work on the living room - one of those people is a crawling baby! I look at the bed, which is completely covered in hangers and clothing and boxes.  I'm married, which means I'm at the point of no return.  I could certainly sleep under this stuff, but sigh, not my husband. 

Or my cat. 

I have to finish.

Five hours later - dust bunnies roam where my guests will be, but my closet is color coded, tops are hung by sleeve length and style, and everything is on the same type of hanger, facing in the same direction.  Scarves, tanks and hats are all in bins, and I found an old Gucci purse I'd forgotten all about. (An ebay purchase I suspect is fake and which seems to be peeling inside, and is that a bug?) 

Maybe I should serve dinner in the clean closet.....once I throw away the purse.

November 22, 2014 - Cancer Rant (edited)

I am feeling annoyed and stressed and it shows up as my being short-tempered with those who seem self-absorbed especially. And yet, here is a self-absorbed post. Go figure!

The pain is bothering me - nothing new there but it's probably because the weather is cold. I'm sick of the game of having to refill meds: call 24 hours in advance, then drive to get them from the doctor's office, take them to the pharmacy, pick them up, sometimes twice a month since they run out at different times.  The holidays make it worse because everybody is closed and you have to time it so you don't run out and the insurance companies don't let you refill even a little early.....it's annoying, but if I don't have my meds I am going to be in pain on a family holiday. Makes me feel like a druggie, thanks Feds.

Also:  I'm sick of being tired ALL.THE.TIME.  I wake up and want a nap.

I'm stressed because there is a lot to do before Thanksgiving with a crawler baby, and not much help. My husband is a very good guy but cleaning is not in his skill-set and he has to be told step-by-step what to do, which is exhausting. He is not a worrier but I am - could there be a pin on the floor the baby could get?  It's been 16 years since I had a crawler.  Plus,  I'm very behind on things I need to do (necklaces people ordered I wasn't ready for, they are 90% made but I'm too busy and behind to get them packaged, how CRUEL of me is that?) and I haven't started my Christmas cards yet,  and not only that....

..... the fact that I am in remission is not comforting me.

It is making me see life as way too long - I'm actually feeling ready for it to be over, like I'm done. Like the best years are over and now it's just difficulty.   I know that's ungrateful.  Am I going to live like this for years? What seemed wonderful and manageable now seems like a long, long road full of discomfort and trouble now that it's not ending quick. I know that won't go over well with many who have cancer and are doing poorly, and why should it?  But it's the way I am feeling on this day.

Yes, I want to see my older son marry and yes, I want to see my other son graduate college and watch my grandson grow up....but the space in between doing those things? Right now, it doesn't seem worth it, because I physically cannot do things to pass the time without pain and needing a nap. It is not fun not being healthy, I guess.  And cold, being cold is hard.

I have a new worry:  my husband's kidney function keeps coming back bad and now he has to see a nephrologist.  Well, that doesn't help me mentally. He is 11 years older than me and at some point, I may need to care for him, we always expected that. And that is going to be a sad story now as I'm not that great at caring for myself.  I know better than to jump ahead from a bad blood test to a serious disease, but because of our age difference, I do wonder what will happen if I don't die and he can't help?  Two sick people is one too many.  Our plan was for him to be sick but it's been me.  That's okay but how can it be both of us?

I guess this type of thinking is the adjustment from terminal illness to chronic illness.  What was joy at the thought that I had life left, years maybe, is turning into the realization that those years might not be great ones.

I should be working every day, we should be going out and enjoying our life, seeing plays and going to dinner, doing some traveling and all of that.  Now that my husband is retired and my son is in college, that was our plan. And, we can't.  Because of me, because I don't feel well, it's entirely my fault.

Don't I know better than most plans are an illusion? I do. But I'm still feeling that loss. It's a new one because I thought the loss was immediate but now it seems a long, slow decline.

This too shall pass.  My guess is it will pass the second daylight savings comes back.

I figure I will post it, as I think some people think I never have these days. And they are wrong. They aren't often; I love life, even diminished, even not the way I'd planned - but these negative days roll around for me as they must for everybody who has been sick for years. I'm not fond of whining but sometimes, you need to get it off your chest.

I KNOW I'm lucky, but I'm human.

November 20th, 2014 - Day after Perjeta/Herceptin Infusion

I'm in bed, bones aching, throbbing. I'm in a weird half place; not tired enough to sleep, not feeling well enough to get up to get to the painkillers. So I sit in bed and just...hurt. I look at my arm next to me and it's glinting. WTF? I have tiny pieces of glitter stuck in the wrinkles of my arm, sprinkled from wrist to shoulder, really, I'm just showered in glitter. It's not a good look. Beautiful, tan, round twenty-year old arms look lovely with glittered mica floating on the skin, but not 56 year old beef jerky skin arms; the glitter settles between mini-folds and the cracks of a hard life. Why glitter? It must have come from a Lush Christmas moisturizer bar that I slathered on last night. I didn't see or know that there was glitter in it, but it's sparkling at me today; winking at me. 

In summation, I'm in bed, sick from cancer treatment, smelling like cotton candy and glittering in the light.

Other Stuff

Don't forget to start here for any Amazon purchases you make this season. I am an Amazon Affiliate, which means I get a small percentage of the things you buy. All you have to do is start your shopping session from my blog and anything you end up checking out, I get 4 to 6% of the price. It has been a great help over the years.  I do have an affiliate box on the right or you can use the link in this post. That's the main way I make "money" from this blog (actually, I get Amazon gift cards that I use on Amazon that my son has access to if he needs anything in college) so it's helpful and costs you nothing.

If you haven't found me on facebook yet, please find me and hit the like button.

If I am not able to post before Thanksgiving, I hope  you have a wonderful day, full of food, family, football and whatever your tradition is.   I know I will - my youngest son comes home from college tomorrow.  I cannot wait, and if allowed, will throw a photo or two on facebook.

Sunday, November 16, 2014

Thanksgiving Cancer Style

I used to be a foodie.  I cooked "gourmet" as it was called then.  Fresh everything, from scratch.  I  grew my own herbs, shopped farmers markets, had boxes from local farmers delivered to my house weekly with unknown goodies in them I'd find recipes for.  I was the first to find a weird and unknown vegetable and figure out how to use it.   I cooked a different, fresh meal every day, simple meals on the weekday and elaborate ones on the weekend.  They were steaming plates of love, and I know my husband married me for my cooking skills.  I was farm to fork before Farm to Fork became a thing.  I enjoyed entertaining (not because of decorating, and my guests had to step over the dust bunnies, but because of food) and loved coming up with epicurean dishes. I know I am responsible for at least one women becoming interested in food. (Hi Colleen!)

Thanksgiving is a foodie's paradise - as well as a foodie's hell. One has to serve traditional, expected dishes otherwise people get upset. But within that, one can become creative.  In year's past, I scoured Bon Apetit and other cooking magazines for unique recipes to make the old.. new. Yes, I made the green bean casserole that everybody makes -  but I would use fresh green beans, picked that day and lightly cooked in salted water.  I'd french my own onions, make my own whitesauce and use portobellos as the mushroom.  My cranberry sauce might have ginger and jalapeno, my stuffing might be rye. Gravy would be made with hand-picked bay leaves and stock I made myself from the innards.   I'd roast root veggies, mash sweet potatoes with cream or chop them with rosemary.  I was creative with new recipes and tried something different every year.  I'd even sometimes go for a theme:  Southern, with blackened turkey and cornbread dressing,  or New American with Smoked Turkey and garlic mash.  I always had 3 pies made with homemade whipped cream, one of them chocolate.

My larder was, to say the least, loaded.  I overcooked, and everybody had full plates, and seconds and thirds.

But then I got sick and started years of chemotherapy.  I slowly stopped cooking, and my youngest son has grown up very differently than my oldest - much more take-out, much less creativity, Dad as the primary (and uninterested) chef.  I kept up the holiday cooking, but it became difficult.   Standing for a long time is painful, a three day cooking marathon exhausting. Shopping with a low white count was dangerous.  I loved my family but it was too much work.  One year, early on in my chemo days, my stepdaughter did the Thanksgiving cooking, which is a fond memory.  The food was delicious (no small feat for somebody not used to my difficult kitchen).  I got to just sit and eat, a real treat, unusual.

Eventually though, years of treatment have dragged on, the visible sign of my illness - my hair - grew back.  I have been in remission for almost a year.  People are naturally weary of my disease and have started to think of me as well again.  I almost do too, sometimes.  I now plan for the future, buy subscription boxes (this time makeup samples) and am even halfway done with Christmas shopping.  I didn't do those things last Thanksgiving, not convinced I'd be around for a month.   But however long this remission lasts, 2 months or 5 years,  I don't think I'll ever be healthy again; years of cancer treatment has left its wretched mark.  I still need 12 hours of sleep, I still have quite a bit of pain and cramping, I can't stand for long nor can I lift my arm above my head.  For crying out loud -  laughing too much sends me into spasms of pain and hiccups!  I can't laugh!   Five years of ongoing chemo and surgeries have left scars, both visible and invisible.

But I'm not complaining.  I'm thrilled every moment that I am here, even the days the dog gets skunked.

It does mean though, that cooking is still hard and to top it off,  I have completely lost my appetite.  I have no interest in eating, which is why my weight is down to the low 90s.  Although I don't recommend this, I've self-diagnosed myself as having Cancer Anorexia-Cachexia Syndrome.  Or at least the Anorexia part. My doctor is very concerned about my weight although hasn't given it a name.  I am not near the end of my life, (I hope) but I do fit the criteria as outlined. I would never eat again if it was up to me, which is sad considering how much I loved food. I wish I could eat, and I do try but it is painful and the thought of food is repulsive (which is why it's hard to cook).  If I get sick and lose more weight, it takes months to get it back.   In the past,  I could never eat a lot and was always thin, but boy did I enjoy good food. Now, about all I can stand is fruit and it has to be perfect, and I also eat Sprees like a child. I had always thought that when my kids were grown and gone my husband and I would go out to eat regularly, brunch on the weekends, dinners out a few nights a week, and we'd try all the new restaurants we could, as a foodie should. There are many good ones in Sacramento.  That would be our hobby together - and now I have no interest at all.  I'm a good girl, knowing I must, I do eat once a day most days, but my caloric intake is pretty low.

Still,  I like nothing better than my family gathered around my table for the holidays, even the food-centered ones.   I have a specCrapular house, old (built in 1947) uncleanable, Mamie pink bathroom, not enough electrical outlets, too many pets.  But it is full of my family and that's what I love.  I want them to keep coming for holidays - and this year I have a grandbaby!

What what does a person with certain former food standards do when they can't cook to entice their family home for the holidays?

I discovered Whole Foods Thanksgiving Meals.  Not only is delicious,  it's really no more expensive than making your own meal.  For $99.00, you get a 12 pound free-range, antibiotic-free turkey with 4 pounds of mashed potatoes, stuffing, cranberry, rolls, 8 gravy, and a Pumpkin Pie.  For an additional 50.00, you can add sweet potato casserole, a potato gratin, more rolls, sausage stuffing, mushroom gravy and a cranberry apple pie.

I ordered them both, as I have for the past 3 years, and I know it's enough to feed 15 people with leftovers.  Now all I have to do is make the green bean casserole for my son (this time with Campbell's soup and French's canned onions), a coleslaw recipe that has been in my family for generations, and a chocolate pie, still with homemade whipped cream.  And, we will feast, and I may have a bite or two myself.

I know many stores sell these Thanksgiving meals, and previously, I could not imagine buying one.  But it has become a yearly necessity, and I'm so thankful that they are available. After having one, even healthy, I can't imagine not purchasing it.  The Whole Foods meal is delicious, richly flavored and healthy.    My table will again be full of delectable, if not exactly home-made food, and I will be celebrating not only another amazing year of life, but my oldest son's recent engagement and watching my new grandson experience his first Thanksgiving.

What could be better than that?

I can't wait.

Monday, November 3, 2014


Michael Davis' tumor

I considered blogging about Brittany Maynard and her compelling right to die story, but I could not bring myself to do it.  I believe that this is each person's decision, and I really have no business weighing in.  We all know what I would have done in her situation:  here I am.  Yet, she has her own value system and her own way of determining what is best for her family and how can I analyze that? I can't.

My only worry is that, should it become law in my state,  insurance companies may possibly start denying care and pushing people into making this decision when they might not have before.  If it could be pure than I could support it but in business and politics there is no purity, and I do believe, if an error is to be made, it should be made on the side of respecting life above all else.  And that is pretty much the extent of my thoughts on this poor woman and this controversy, except that I wish her family peace and comfort during this difficult time.

I know this has been a polarizing story.  I thought this might be the time to show that there are people who want to live on when they have glioma, who chose a different path. My friend Michael is one. I've known him since 2002, before cancer had entered either of our lives.  Last summer, he had surgery to remove his deadly tumor, which you can see above, was nearly half his brain.  He spent four months in a rehab center but recovered enough to be released to his family. He is now doing chemo.

He has had a very tough road, and it is unlikely to get easier for a while. He is a father who can no longer work. He got cancer 8 months before his job would have been saved for him. He is trying to get COBRA.   He's working with the drug companies to try and get his supportive, anti-seizure, anti-nausea meds covered.  He has struggled to relearn many things we take for granted.  Yet he is enjoying his children and appreciating life.

He and his family can use financial support.  Here is his GoFundMe page.  You can read his updates, although they are difficult due to the language processing centers that were damaged.  But you can still see the sense of humor and hope that shine through.

If you can help a guy out, this is the one to help. Even if you can't help by donating, you can help by sharing this with your friends.   The more people who see it, the better. He does not have a professionally done video, or any news media to help get the word out, or a professional writer to help state his case - nothing but his family and his words before he underwent treatment. Of all things, this should go viral. If a guy can get tens of thousands of dollars for making potato salad, then surely people will find it in their hearts to give this family a little security as they deal with this awful situation - one that I understand deeply, can happen to any one of us, at any time.

Those of you who believe that Brittany Maynard did the "wrong" thing, I think you have a responsibility to put your backing behind somebody who is doing what you think is the "right" thing, don't you?  Here is your chance.

Mostly....Thanksgiving is coming. Then Christmas.  Let's buy this family a turkey - and then some! Let's give them some breathing room. Let's make those kids have one less thing to fear.

To donate directly:   First Financial, Michael Davis Medical Fund/#02110099799, 4400 Buffalo Gap Road, Abilene, Texas 79606

Sunday, November 2, 2014

Whew.....We Survived Pink October. On to November!

My goal for pink October was one long post, detailing how egregious the marketing has become.  I have had several people say that seeing it laid out that way opened their eyes.  I do realize it was difficult to read and I apologize, but I do think it was important to have a long, pink line highlighting what has gone so wrong with the month.

Breast cancer does not exist solely in October.  I live with it every day.  While I am lucky enough to be in remission right now, it only takes a small thing to remind me how close to the brink I am.

I had a cold and sore throat, which is no big deal for most people.  I, however, had lost some weight and got down to 94 pounds, which means I don't have reserves of strength to draw on.   Then I went to get my therapy, and that day I crashed, hard.  How I made it home, I am unsure, as I started feeling ill before I left the infusion room.  I was fine when I walked in, and by the time I got home,  I was in bed, vomiting, sweating, weak, shaking.  No fever, but very ill.  I spent 2 full days in bed, trying to eat soup but throwing it up.  On day 3, I recovered, got up, shaky like a new born fawn.  It is Day 5 and I am still weak but I ate eggs yesterday, soup, mashed potatoes and kept it all down.

Small things that for others go unnoticed, for me can cause devastation.

I learned:  don't have a cold and get therapy at the same time.  Next infusion, I will ask for the drip to be slowed, just in case I am starting to react to the meds.

Cancer, for me, is 24/7.   My doctor told me that I am "on the edge" and he is right.

As are many of us who live with metastatic breast cancer.  Our lives will never be normal again.

Next October, if you see this, don't bother dressing up in pink costumes for "breast cancer day" at your workplace.  Find a cancer patient, bring her some soup.  A blanket.  Write her a card.  Do something FOR somebody. Remember, that cancer is all year and for some of us, it is the rest of our lives.

On to November, Thanksgiving and the Holidays!

A favor:  during this shopping season, if you buy things on Amazon, please remember to start your search from the box to your right on my page.  I get 6% of all sales, and you don't have to do anything but start your search from here.  Thank you!