Monday, May 30, 2016

A Cancer Family

My family is a cancer family now. One day we were normal, the next we were not. I did this to us. By developing breast cancer, I changed my family. I changed my wife, and I changed my kids. We are no longer just a family.

We are now a family who lives with cancer every day. We are a family who functions in the unknown. We are family who lives day to day, not planning for the future. Not thinking too far ahead. We are a family who will take no vacations this summer because mommy can't wander too far from the hospital. We are family who can't go to the park on a whim because mommy is tired. We are a family who structures our activities around chemo days and side effect nights. We are a family who functions at a constant anxiety level that we were certain three months ago would have broken us by now. But we are stronger than we think. More resilient than we ever thought possible. We are no longer just a family.

We are a cancer family.

In every cancer family, there are two opposing forces that are always in conflict - the desire to be careful and the desire to be normal. On any given day, these two desires can wreak havoc. The thing is that there is a never a day when every person in the family is on the same page where these two desires are concerned.

The kids crave normalcy, for the most part. They want go to the park. They want to go the pool. They want mommy to take them to karate. To cheer at their soccer games. To smile proudly as they sing with the choir. They want mommy to help them with their homework. To cook them dinner. To tuck them in at night instead of crawling into my own bed at 7pm. They want to snuggle me. They want to get mad at me. They want the right to hate me at times. How can they hate me when I am laying bald and exhausted on the living room couch? Other kids are allowed to hate their parents. But my kids must take care not to upset mommy. They must take care to ensure mommy gets her rest. They must take care not to tire mommy out. At all times, they must take care. And it is unfair.

My wife wants nothing more than to take care. To be careful. Whereas the kids live in the moment, my wife thinks long-term. Taking care now ensures normalcy later. It is a logical thought process. It makes sense, but there is very little about cancer that is sensical. She begs me to rest. To lay low. She wants me to eat nothing but fruits and vegetables. Lean protein. She wearily watches every morsel of food I put in my mouth. She gets defensive when others ask anything at all of me. She screams with her eyes. She rages with her posture.  Can't you see she has cancer?! Can't you see she is fighting?! She is a lioness. Frightened. Protective. Angry. Dangerous. She thinks I do too much. She thinks I try to hard. Given the choice, I am pretty certain she would encapsulate me in a sanitized bubble until I was healed. Until a cure was certain. Locked away from anything and everything that could harm me.

I fall somewhere in the middle. I know I need to take care. I know I need to rest. To eat healthy. To listen to my body. I know I need to take my medication and heed my oncologist's instruction. I know what I need to do, but I want nothing more than to be normal. I want to scream, "Fuck you, cancer!" I want to do everything I can to spite cancer. To show her  in no uncertain terms that she can't change me. I want to eat my body weight in Mike and Ikes. I want to sit in the sun and absorb every last molecule of UV rays. I want to spend hours perusing the aisles at Target. I want to go to the park. And go to the lake. I want to rip the port-a-cath from my chest and run away. Far away. I want to leave the country. Leave everyone and everything I know. I want to pack up Ruanita and the kids and go somewhere where no one knows us. No one knows we are a cancer family. I want to forget. I just want to be normal again. To be the me I used to be. To be the us we used to be.

But I know that is impossible. I am not the same person. Cancer has changed me no matter how fiercely I grapple for the old me. I know what I need to do. I know I need to stay and fight. To ground myself in the here and now. I need do everything I can to beat this. I have to forgo normalcy. To take care despite every impulse to the contrary. To acknowledge that I can't be everything to my children right now. And that's okay. I need to heed my wife's sometimes less than gentle advice, realizing that it is rooted in both fear and love. I need to do these things to ensure the survival of my family. To ensure my own survival.

We are a cancer family now, and whatever happens, we are in this together.

Friday, May 27, 2016

The Perfect Brazilian


So the fourth cycle of AC chemo has pretty much officially kicked my ass.

I spent most of the day at the hospital yesterday. I've been experiencing a lot of breathlessness lately - even doing tasks as minor as walking upstairs to go to bed - and my heart has been racing a lot. I was concerned because I had not experienced this with previous cycles. So I went in to have a CBC done to check my hemoglobin level. It was low, but not low enough to account for my symptoms. So the doctor wanted to rule out a pulmonary embolism and heart damage (Adriamycin - one of the chemo drugs I am getting - can cause heart damage in some people). I had an EKG done and a CT scan of my lungs. Both came back normal. I am still going to have a echocardiogram done next week to make certain my heart is fine, but I suspect that will come back normal, as well. We have pretty strong tickers in my family.

With all catastrophic causes ruled out, the doctor believes that the breathlessness and elevated pulse are simply a byproduct of four rounds of AC chemo compounded one on top of the other. She said the fourth round is typically pretty hellish - which I can certainly attest to. My doctor explained that AC chemo completely deconditions your body, meaning that it strips your body of any tolerance for exercise you have had in the past. So walking up stairs will feel like the first time you've ever walked up stairs in your life - exhausting.

I would describe the feeling like this:
  1. Imagine yourself the fattest you have ever been in your life. 
  2. Now imagine yourself that fat, and it is Thanksgiving day. You have just inhaled 3 helpings of mashed potatoes, a mound of stuffing, and enough tryptophan to sink a beluga whale. 
  3. Just as you are settling down for a well-earned nap in front of the telly, Jillian Michaels busts in on your delightful family Thanksgiving and forces you (because there's not way to say no to her when she is screaming in your face) to do 100 jumping jacks post-nosh. 
  4. Afterwards, you collapse on the couch - distended and drained and deflated.
That moment of collapse is exactly how chemo has made me feel this time around. Bulky and bloated and breathless and beaten. Needless to say, it's not been a pleasant couple of weeks.

That said, I am starting to feel a tiny bit more energized today. I was able to go out to breakfast with my wife and my mother (my two rocks, by the way) this morning and had a wonderful time laughing and eating. I am finally starting to come out of the fog (though I did stop for an inordinately long time at a stop sign this morning waiting for it to turn green). It's a bit of a late fog emergence, but it is welcome.

That is not to say, though the fog is lifting, that I do not have additional complaints. And, as usual, I am more than willing to share my TMI complaints on this blog.

You've been warned. 

So today I want to share an especially personal and annoying effect of chemotherapy with you. In addition to complete loss of the hair on your head, chemo causes hair loss in other areas. I have no complaints about no longer shaving my legs. It's pretty sweet, actually, since shorts season is quickly approaching. And smooth armpits are definitely a silver lining. But hair loss, ahem, down under is something with which I am not exactly cool.

Initially, I was somewhat excited about this impending inevitability. I thought, People pay big money for Brazilian waxes and here I am, getting one for free! Silver lining! I thought it would be an interesting experiment in extreme grooming.

I was wrong. 

Without hair in certain areas to provide a layer of friction control as God intended, thing chafe. They chafe badly. Now it may be because I am plus-sized down there (yes, I have a fat vagina and I am totally okay with it), but there is some serious chafing going on from underwear friction. And chafing leads to itching. Rather extreme itching in places you simply can't scratch in civilized circles. Just last night, I was laying in bed and I had a serious need to scratch my nether regions. Since I don't consider my bed "civilized circles," I went for it. Ruanita thought I was doing yoga poses in bed. I didn't correct her.  

At breakfast this morning (as proof of how my conversational skills have devolved in recent months), my wife and mother and I came up with a possible solution to my problem. Prosthetic pubes! I am pretty sure someone, somewhere has come up with this idea and is working diligently to fill the public demand. I think I might have even seen it on Shark Tank. If any of you are out and about (at Wal-mart, perhaps?) and see some prosthetic pubes in a size XXL, can you please pick them up for me? Chestnut brown would be the preferable shade, but I will settle for anything that is not white. I am good for the money. Oh, and please make sure they are brand new. No factory refurbished models, please.

Thanks, I really appreciate it!

Sunday, May 22, 2016

A Chemo Week in Review

It's been an uneventful week around here - much like every other chemo week I've had to date. I had hoped this one would be different. I tried to force it to be different, which was a horrible, miserable failure. Apparently, try as I might, I can't will away the effects of chemo. 

Here's a brief glance at my week in review:

Monday - My sister took me to chemo. We had a good time, if a good time can be had at chemo. I came home that night feeling pretty good. Peed on myself three times between 6pm and 8pm.

Tuesday - I waited around all day for the nausea and fatigue to hit. It's not a terribly pleasant feeling waiting to get sick. Being that tuned in to your body can be curse. Every yawn, every stomach gurgle, every twitch had to mean something. The chemo effects came a day early last time, so I was expecting the same. So I waited and listened to by body. Peed in my pants two more times (urinary tract irritation is a very real side effect of AC chemo - or I have an especially namby-pamby, pantywaist of a bladder). Nothing else happened, so the day of waiting was wasted.

Wednesday - The chemo hit me full force on Wednesday. Slept most of the day. Got in a small tiff with Ruanita about bills. We were actually on the same page, but not communicating effectively. There's something innately stressful about receiving bills in the mail that total over $1000 a pop - even if you can pay them. Stopped peeing on myself - once again gained full control of my rogue bladder. Silver lining! Went upstairs to lay down for a bit at 6:30pm. Did not wake up until almost 8:30 the next morning.

Thursday - Woke up and traveled the lengthy distance from the bed to the couch. Sophie was home sick from school, so we laid around and watched Harry Potter movies most of the day. I learned that a good friend of mine who fought breast cancer and won in 2013 (actually, I've never met her because she lives in TX, but she is a fellow [former] writer for The Next Family and someone who has supported me and gave me great advice since my diagnosis) received a new diagnosis of stage 4 breast cancer this week after a routine follow-up. She received the exact same treatment I am currently undergoing in 2013, but the cancer she beat to a bloody pulp has managed to come back. Now it is in her throat. She had her thyroid removed in 2014 and there was an old calcified nodule at the time that was cancerous, but tiny. No further treatment needed. Now it is back. And it's not thyroid cancer. It's metastasized breast cancer. Needless to say, this threw me for a bit of a loop. She won. She's a survivor. No one should have to do this twice! Ever! Cancer is bullshit. Went to bed at 8pm feeling defeated.

Friday - Slept 12 hours and woke determined to feel better, dammit, whether I actually felt better or not. Convinced Ruanita to take me out to lunch. Spent the entire lunch with Ruanita asking me over and over, "Are you okay? Are you alright?" Honestly, I was not, and she knew it. My insides were quivering, but I choked down my lunch nonetheless. Goddammit, chemo was not going to deprive me of a good lunch! Despite my bravado and determination, venturing out was too much, too soon. I think I thoroughly pissed Ruanita off with my desire to push through and speed up the normal process of coming out of the chemo fog. Of course, it didn't work. Spent the remainder of the day on the couch, in and out of consciousness.

Saturday - Woke up to sunshine and high 70s, a gorgeous day just ripe for spending the day exploring the Cities. Planned to go to the park with the kids for our annual neighborhood festival, but it didn't work out. Still lightheaded and exhausted when I tried to get up off the couch, I so wanted to feel better - to feel normal again. I knew in my head that I don't normally start feeling like myself until Monday or Tuesday of the following week after chemo, but I wanted this time to be different. Perhaps because it was the last one - or perhaps because of my friend's recurrence. Whatever the reason, I wanted nothing more than to feel like me. To feel like the me that existed before this whole cancer mess. To be normal again. But it doesn't work that way. Have I mentioned that cancer is bullshit?

Sunday - Ruanita is at work today. I am sitting upright typing this, but the couch is calling my name. There is still a lingering weight in the pit of my stomach. Not nausea, but not exactly normal either. I am still tired and my limbs still feel heavy. There is a fogginess in my brain - a lightheadedness I do not enjoy. I know that it will get better every day from here on out, but I want to go to the park. I want to walk around the lake. It's another beautiful day in the neighborhood and I want to be a part of it. I think that's the worst part about chemo - at least for me. It separates you so completely from the rest of the world. The world goes on while you cling to the couch. While you cleave to delicious consciousness with both fists, everyone goes about their normal activities. There are end of the year field trips, orchestra concerts, trips to the park, dinners out, concerts, parties. Shit, even running out for a cup of coffee seems like an enviable luxury! All the things that make life worth living happen while you lay on the couch. It's really not fair. Cancer is bullshit.

Anyway, that is my week in review. Sorry if I sound rather morose. I don't mean to be a complete and total downer. Ruanita is amazing. The kids are doing really well, considering. I am surrounded by super supportive people who are making this so much easier than it could have been. I feel like I should be celebrating the fact that I am finished with AC chemo - that my treatment is moving forward - but I need to feel like myself again before I can fully celebrate anything. I'm still committed to seeing the silver linings, but they seem to be fainter when I am in the midst of it all.

Tomorrow will be a better day. The day after that, I will feel even more like myself. I just have to get through one day at a time and I will be me again one day soon.

Until then, I will try to keep my morose ass off the internet.

Tuesday, May 17, 2016

Fourth and Final AC Chemo is Done and on the Books!

We've reached an important milestone in my treatment for breast cancer. My fourth and final AC chemo is all done and on the books! This may not seem like a big deal since I have 12 more weeks of chemo ahead of me, but I am officially done with the Red Devil.

That bitch had her way with me, and I survived!

Yesterday went relatively well - as well as a day can go spent getting poison pumped into your vein. My sister, Jennifer, went with me, which was nice. We rarely get to spend time together without a house full of kids, so it was nice to just sit and chat. Jennifer had the brilliant idea to go up to the Gift Shop and buy a deck of cards, so we spent the afternoon playing Tonk and Rummy and calling each other rude names (for the official record, she's a dirty bastard and I'm a cheating whore). It was fun and made the whole time we spent in the infusion center fly by.

It also helped that there were a few cancellations in the infusion center yesterday, so things moved along quite quickly. As a matter of fact, from my blood draw to my final bag of fluids, the whole shebang only took 4 and a half hours. I think that is a new record!

I met with my oncologist again yesterday. All in all, my bloodwork looked good. My white blood count was a little high, but they are only concerned if that is low. I was, however, a little anemic. My hemoglobin was 11 grams per deciliter (11g/dL) when it should have been 12-16g/dL. My heart rate was also at 135, which can be a symptom of anemia. Anemia can cause a rapid heart rate, as well as extreme tiredness and fatigue. It may just explain why I needed a 2-hour nap this past Saturday afternoon, long after the normal chemo fatigue had lifted. At this point, my doctor is going to just monitor the anemia. Typically, they do not get really concerned until the hemoglobin gets closer to 9g/dL. If mine does continue to drop, we will talk about doing a blood transfusion at that point.

We also discussed my upcoming switch to Taxol. I am saying goodbye to the Red Devil and moving on to a new chemo drug, Taxol. Beginning on June 1st (my chemo day is switching to Wednesday due to the Memorial Day holiday mucking things up), I will receive Taxol once a week for 12 weeks. Per my doctor, Taxol is better tolerated by most (but not all) people. It does not cause nausea. (Yay!) It seems to cause a lot less fatigue! (Yay!) It can, however, cause more neuropathy in the hands and feet. (Boo!) And it can cause bone pain that begins a few days after chemo and lasts for a few days. (Boo!). The bone pain can be anywhere from mild to quite debilitating. I am hoping, obviously, that I will end up with the mild version. I will not have to go in the day after chemo anymore for my $21,000 Neulasta shot (seriously, I got an EOB in the mail and that shot alone is $21,000...and I got it 4 times), so that'll be nice. (Yay!) Taxol does have about a 10-15% allergic rate, meaning that 10-15% of the population has an allergic reaction to the drug, so they will be giving me Benedryl prior to chemo rather than the usual pre-chemo nausea meds. There is a very real chance, pumped full of Benedryl, that I may just snooze through the Taxol infusions. All in all, it sounds like something that I will better tolerate than the AC chemo I've been receiving, so I am pumped to get started.

One sad thing I discovered, however, is that favorite beloved oncology nurse, Mary, does not work on Wednesdays. She had given me every one of my chemo treatments so far. I really enjoy chatting with her, so I am going to miss her for the next 12 weeks. When going through intense treatment like this, it is easy to form attachments to people. So I am kind of in mourning a little bit this morning because I am going to miss Mary. I am sure all the other oncology nurses are just as sweet, but I have really become attached to my Mary. (Boo!)

Oh, I do have good news, however! I managed to make it all the way through chemo yesterday without peeing in my pants...

...in the hospital.

When I got home, I peed my pants not once...not twice...but THREE times between 6pm and 8pm. Another record broken! The combination of all of the fluids I receive at chemo and the fact that the AC drugs seriously irritate my bladder is a nothing short of a recipe for disaster on chemo day! I managed to pee all over my favorite jeans AND my favorite pair of pajamas. Grrrrrr. When the urge to pee hits, if I am not standing directly over a toilet at that exact moment, I am screwed. There is no way I can make it the 15 feet from my living room to my bathroom, manage to get my pants unzipped and pulled down, and aim for the general vicinity of the toilet before it is running down my legs in a river of day-glo orange. I hate peeing in my pants. I don't know how I managed to survive doing it every day for the first three years of my life. It is disgusting, people. Dis. Gust. Ing. 

So today I sit waiting for my latest chemo to knock me unconscious as I am sure it will, mourning the loss of my beloved Mary, popping anti-nausea pills like they are candy, looking forward to inevitably peeing on myself today, and preparing to drive to downtown St. Paul for my last Neulasta shot.

It's gonna be a good day!

Sunday, May 15, 2016

Don't Call Me Brave


There's this weird thing that happens when you are diagnosed with cancer. Suddenly, and sort of inexplicably, people begin to call you brave. It's a surprise that you don't really see coming. Sure, I've said it about others, but it's not something I was prepared to hear about myself. BRAVE. It's just weird. People call me courageous. Inspiring, even. People say things to me like, "Your bravery is an inspiration." Or "I'm so impressed by your courage."

These phrases are meant as compliments. The people who say them mean well. "You're so brave" is a phrase that is uttered with affection, but as a person diagnosed with cancer, it strikes me as the oddest thing people say to me. 

Don't get me wrong. It feels nice to be told I am brave or courageous. It's a nice little ego boost. Obviously, it feels good on an interpersonal level to have people saying nice things about me. Like everyone, I want to be liked and admired. I want to be brave.

But the thing is, I know in my heart of hearts that it simply isn't true.

I have done absolutely nothing that would earn me a badge of bravery. Being diagnosed with breast cancer is something that happened to me. It is not something I chose. It is not something I created. Undergoing treatment for cancer is also something that is happening to me. Sure, I could have forgone treatment, but that would have been rather stupid. So really, the best that can really be said about me is that I am not a blubbering imbecile.

When I think of brave people, I think of people who run toward a fire to save others. I think of people who travel halfway around the world to open clinics in under-served third world countries. I think of people who face discrimination and violence to stand up to injustice in the world. These people are brave. These people are heroes. Not me.

All I do is lay on the couch in a stupor and occasionally vomit. I'm just a person with a shitty disease.

I know when people read this, they will say, "But you are fighting so hard. And you have such a good attitude."

Again, not particularly courageous. Survival is a basic human instinct. I am doing nothing more than ensuring my own survival, at this point. Complying with treatment, resting when I am told to rest, taking my medication - these are not courageous acts. They are simply the necessary steps I must take to ensure that I get through this alive. Even my positive attitude in a conscious act of survival. Believe me, the thoughts that go through my head in the dark, alone at night, are not the thoughts of a hero. They are not the reflections of a brave individual. It would be easy to succumb to these thoughts.

There is a song  from the musical Hamilton called It's Quiet Uptown. In it, the characters are singing about the grief of losing their son. There is a lyric that goes, "The moments when you're in so deep, it feels easier to just swim down." That is how cancer treatment can make you feel. On my "bad" days after chemo, I often feel like I am drowning in the sheer exhaustion. I feel like I am physically sinking and my life is no longer my own. And on these days, it seems like it would be so much easier to just swim down than it is to aim for the surface. But swimming down would be admitting defeat. And as a human, survival is my foremost instinct. So every single time, I swim up. I slowly come out of the fog and back into the land of the living. It's not bravery that forces me to do this time and again. It is simply the basic human instinct to survive. 

So I laugh. And I make jokes from my perch on the couch. I write blogs about how ridiculous and foreign and absurd cancer treatment is. And I assure my children that I will be perfectly fine. I push the anxiety and worry to the side - not because I am brave, but because every primitive instinct within me is screaming that these thoughts are not helpful. These thoughts are not beneficial. They will not contribute to my survival.

Tomorrow, I will go for my fourth AC chemo treatment. If the third round is any indicator, it is not going to be fun. But I will swim up. I will come out of the fog. I will laugh. I will play. I will maintain a positive attitude at all costs - I will believe all the way down to the very marrow in my bones that the chemo is working. That the treatment is succeeding. To think otherwise is completely outside of the realm of possibility.

I am not brave. I am not courageous. I am human. And like every single one of us, I will do what it takes to survive. I have no choice - it is ingrained in my DNA to do exactly that.

Trust me. You would all do the exact same in my shoes.

Monday, May 09, 2016

Creepy Shadow Puppets


It's a really weird thing not to recognize your own shadow. 

Your shadow is sort of something you take for granted. It's been with you for decades. You are used to seeing it on the sidewalk when you walk the dog. On the kitchen cabinets when you make your morning coffee. It may be wider  than you'd like. Shorter than you'd like. But it's yours and yours alone. Your shadow is familiar. And friendly. It is your constant companion. Maybe even your friend (if you were a particularly lonely child, perhaps).

Then one day, you end up with cancer. You lose all your hair, and your shadow becomes a stranger.  A foreign creature--both hideous and unexpected--stalking you from room to room.

Making my coffee this morning, I was startled--yet again--by my shadow on the clean slate of my white kitchen cabinets. What the hell IS that thing??

Thick neck. Big ears. Egg-like polished top.

It's Darth Vader without the mask--breathing his creepy asthmatic wheeze in my ear.













It's Sloth from The Goonies--looking like a phlegmy Picasso painting.














It's Verne Troyer flashing jazz hands at me.












It's Seal crooning at me in his generally creepster sort of way.











It's Verys from Game of Thrones, sniggering and planning my inevitable demise.













My shadow has become all five of these men rolled into one and, frankly, it's a wee bit disturbing. Imagine walking into the ladies' room and being followed by Verne Troyer. It's scary as shit! Or having Seal pop up on your bedroom wall as you sit up and rub your eyes first thing in the morning. It's enough to make the faint-hearted scream in terror.

Darth Vader stalks me in my own living room.  Sloth jumps out at me from behind the couch. It's like living in a haunted house, people! No one warned me about this unpleasant phenomenon when I was diagnosed with cancer. Not a single oncology nurse advised me that Seal would follow me home one day and eat my happy-go-lucky, familiar shadow for breakfast. I may have had second thoughts.

Given all of the facts, I may have decided not to have cancer, after all, dammit!

But it's too late, I suppose. Verys brought all his gowns and is apparently here to stay.  I might as well get used to it. I should look for the silver lining in it all, I guess.

Hmmm...

Ummm...

Huh?
 

Tuesday, May 03, 2016

Plugged Ports and Watery Eyes and Ginseng, Oh My!


Yesterday was my 3rd chemo cycle. We had a bit of an issue with a plugged port this time around. My port would give up no blood at all, so I had to get blood drawn in the lab from my arm in order to get the bloodwork going so I could do chemo. Good times. I was then given an anti-clotting medication in my port. We had to sit and wait for 30 minutes for the drug to work. Luckily it worked. If it hadn't, I would have had to go back to outpatient surgery for a dye test to check for kinks in the port. Honestly, I was surprised the medication worked. Frankly, a kinky port sounds just like something that would happen to me. Luckily, it was just a blood clot at the end of my tube and the anti-clotting drug cleared it right up.

I also met with my oncologist yesterday prior to chemo to discuss my progress and treatment plan. He said I was doing beautifully. All my bloodwork looked great. I seem to be managing the chemo side effects better than many of his patients do. Of course, being the obnoxiously competitive overachiever I am, I heard that as, "You are the best cancer patient I have ever had in my entire career!" I blushed. Why, thank you, Dr. Anderson, you blond cutie you!

I did discuss the eye problems I've been having with my doctor. My eyes feel like they are full of sand all the time, and they constantly pour water. It has been so bad in the last few days that I have seriously considered gouging my own eyes out on more than one occasion. It wouldn't be pretty, but it would be effective. The watery eyes seem to be the worst when I try to read. My eyes fill with so much water that I can't even see the page. Unfortunately, this seems to be a not-so-common side effect of chemo that you don't hear much about. AC chemo generally dries out mucous membranes and can also dry out the eyes, as well. I am using over-the-counter moisturizing eye drops, but they don't seem to help. Unfortunately, there is not much else to be done. So far, this has been the most annoying side effect I have encountered. For someone like me who loves to read, this is borderline intolerable.

We also discussed future MRI's. My oncologist was initially going to do an MRI after the AC chemo, and before I started the Taxol chemo, but he is now leaning toward not doing that MRI. He said that nothing that could possibly be seen in the MRI would change anything related to my treatment because there is no oncologist in the world who would look at my situation and not recommend completing ALL of the chemo. So, he indicated he would probably only do the MRI in between if I really pushed to do it. I doubt I will because, if nothing else, I don't want the MRI to show no change and be smacked in the face with disappointment. At this point, I feel positive. And I really need to believe that the chemo is working. So I am leaning toward completing ALL of the chemo before doing the MRI.

Ignorance is bliss, right?

I also discussed the all-encompassing fatigue that hit me the last cycle. I spent a full 5 days completely incapacitated on my living room couch. Unfortunately, there is not really any medication that is used to treat fatigue. He recommended trying to be active--going for short walks--when I feel up to it. Activity helps, apparently. Ugh. But he also told me about a recent study that my clinic did with the Mayo Clinic regarding the use of ginseng to treat fatigue in cancer patients. Here is a link to the press release from Mayo:  Ginseng fights fatigue in cancer patients.

Normally, my doctor said, he is not a big proponent of herbal remedies, simply because the industry is not highly regulated and you never really know what you are getting when you buy an herbal remedy at the drug store. Also, there haven't been many sound scientific studies done of the effectiveness of many of these herbs. One quote in particular from the article struck me as rather scary: "Off-the-shelf ginseng is sometimes processed using ethanol, which can give it estrogen-like properties that may be harmful to breast cancer patients," said Mayo Clinic Cancer Center researcher Debra L. Barton, R.N., Ph.D.  How would I know if I picked up a bottle of ginseng at Target that it could be processed with ethanol? And how would I possibly know that ethanol gave ginseng estrogen-like properties? I am pretty sure this info is not prominently displayed on the bottle. 

My oncologist really liked the Mayo study because it was a nice large sample of patients at 40 different treatment centers. It was a placebo study and 60% of the study participants were diagnosed with breast cancer. The study showed a 20% decrease in fatigue symptoms after 8 weeks in the patients who received the 100% ginseng. That said, he warned me against just picking up a bottle of ginseng at Target. The Mayo press release includes a link to where you can purchase the exact 100% Wisconsin ginseng (no ethanol!) that was used in the study. I ordered an 8-week supply this morning from the Ginseng & Herb Cooperative in Marathon, Wisconsin and I am going to give it a go. I would happily take a 20% decrease in fatigue, so we'll see how it goes.

All that said, my 3rd chemo cycle was pretty uneventful. It's becoming business as usual. I'm not sure if that's a good thing or a bad thing. It's just a thing, I guess.

Onward and upward.  

Sunday, May 01, 2016

Tomorrow is Cycle 3 (Yay! Ugh.)

For those of you keeping track, tomorrow will be my 3rd cycle of AC chemo. To say that I am not looking forward to it would be a gross understatement. That said, I'm not really dreading it either.

It's a weird thing, this knowing that tomorrow will begin another week of almost complete debilitation. I fully expect to spend the next week on the couch with no energy to do much more than walk myself to the bathroom 14 or 15 times a day (because 80-100 ounces of water is a LOT of fluids). It's not something that is fun, but at the same time, I want to get this treatment over with. So I desperately want to go to chemo, too. It's sort of an emotional roller coaster of desires--to want to do something desperately that you totally have no desire to do. This is a new emotion for me. I wonder if it has a name...? Desperanguish? Eageravoidance? Shittypoopooness?

This time, Ruanita is not going with me. My sister, Amy, will be taking me and sitting at the hospital with me for five hours. Lucky girl! Amy is sort of like me in that she has a totally unnatural and borderline freakish interest in all the blood and gore. Whereas Ruanita will never go back with me to have my port hooked up and my blood drawn, Amy is looking forward to seeing me poked and prodded. I am pretty sure she will not look away squeamishly when they pull out the big red syringes. So it might be nice to go to chemo with a kindred spirit who will ooh and aah at all the the gory medical accoutrements right along with me. If nothing else, it will prove interesting.

And there's always the post-chemo McDonalds run to look forward to.

But there are also some definite downsides to chemo this time around. My twins both have their annual Spring school music programs this week--Tuesday and Wednesday. I will not be attending either. I have not missed a Hale Elementary School music program in eight years, so that kind of sucks. Ruanita is going to videotape it for me, but it's not the same. I will also miss my oldest son's annual Spring concert with the Metropolitan Boys' Choir scheduled for Mother's Day. The Sunday after chemo is still an iffy time for me--I am usually still pretty couch-bound on that day.

And the truly sucky part is that I feel SO GOOD today. The sun is shining. All the trees are blooming. My kids are being especially lovely and hilarious this morning. I have two Kentucky Derby pies in the oven making my house smell like a bourbon-soaked Promised Land. I just want to keep this feeling going. I want to be ME for just a little while longer.

You know what I mean?



Friday, April 29, 2016

An Ode to Nasal Hair



Oh, nasal hairs, you lovable lout!
I never once thought of you
until you fell out.
Now I heartily miss you
every day.
I wish I had the
words to say
just how much
you meant to me,
you sadly overlooked
carpenter bee. 
Always working,
always true,
always there for me
when I needed you.
Collecting moisture,
not allowing it to drip
onto my unsuspecting lap
with a slosh and a slip.
Keeping that snot
firmly entrenched in my nose,
and not on my laptop
and not on my clothes. 
Spring is tough
on a nose like mine,
but you always saved the day
working overtime.
I miss you so,
I can't sufficiently express
how you've left a hole in my heart
and my nose under duress.
I hope to see you
once again, one day.
growing healthily and happily
in my nasal passageway.
Until that time,
please know you are missed.
I love you, nasal hairs,
now grow back before I get pissed!


Thursday, April 28, 2016

Speaking Whale and Other Unexpected Cancer Side Effects

Cancer is the great mystery eraser. The great magic killer. If there is anything your partner does not know about your body before your cancer diagnosis, it will be completely out in the open by the end.

Ruanita has watched me poked and prodded. She has watched me drugged and doped. She has watched me puking and peeing on myself. She has sat stoically through numerous breast exams. More people have touched my boobs in the last two months than in my entire previous 43 years of life. There are no more mysteries. I am all out for Ruanita to see. In all my gorgeous glory.

Case in Point: Just yesterday, as we sat in the Mall of America parking lot--on our way to Sears to buy a new dryer to replace the 15-year-old dryer that finally gave up the ghost because major appliances have the nerve to die even when you have cancer--Ruanita reached over to me with a tiny pair of scissors dangling from her keychain and plucked a long white wayward hair from my neck. I could have probably wrapped it around my index finger a few times and plucked it myself. But there was Ruanita with her keen eyesight and her tiny scissors at the ready.

All the mystery is gone, people.

Ruanita and I have been together for 18 and a half years. We have seen a lot of each other at our best and at our worst, but cancer has a special way of erasing the last vestiges of any veil between you and your partner.

Every morning, I sit at the kitchen table and drink a big glass of what I call my "poop juice" (1% milk mixed with Nestle Strawberry Quick and a healthy dose of Miralax--it's the only way I can seem to stomach the Miralax). Constipation is a real (and incredibly painful) concern with the type of chemo I am receiving, so I talk about poop a lot. I thought when my children left diapers behind, I would give up my weird fixation on poop for good. I was wrong.

Chemo also causes a lot of gas issues. Honestly, my stomach pretty much churns all day and all night. I will admit that I fart in bed now. And on the couch. And bending over to feed the dog. Ruanita and I call it "speaking whale" (a throwback to Ellen Degeneres' character in Finding Nemo). It is not ladylike. It is not pretty. My only consolation is that Ruanita is fluent in "whale" as well. And she does not have my chemo excuse.

And today, Ruanita is going to shave my head. My sisters gave me a very tight miltary-style crew cut a few weeks ago, but now even my extremely short SHORT hair is starting to fall out in patches. I look like a dog with mange. And my head itches constantly. So I am biting the bullet and allowing Ruanita to shave me completely bald with a pink Daisy razor today. Yet another veil ripped away.

Cancer is not pretty. It's a fact. But here's the thing...I never aspired to be pretty. Pretty intelligent. Pretty kind. Pretty creative. Pretty fierce. These are my aspirations. And cancer can't take them away no matter how hard it tries. 

Tuesday, April 26, 2016

Get the pot! Get the weed!

When I first announced that I was going to be undergoing chemotherapy for breast cancer, one singular refrain rose up from all of the people in my life who had previously undergone chemo.

Get the pot!
Get the weed!
You MUST get the marijuana!
It's the thing you need!

As someone who is more terrified of nausea than losing any body part in my possession, I listened to the masses. I agreed wholeheartedly that the weed was something I most certainly needed. 

But, believe it or not, I had never smoked pot in my life. I was raised in Kentucky where our drugs of choice are meth and Mountain Dew. I was never really exposed to pot growing up. My friends didn't smoke it. My friends didn't sell it. It was a non-issue.

When I went to college, I am pretty sure it was around. But again, my friends were more concerned with creating the perfect Bourbon Sour than smoking pot. We chose alcohol. We wholeheartedly chose alcohol. Again, pot was really a non-issue.

So here I am...a 43 year old woman who has had a pretty good time in my life, but I have never smoked pot.

Having never smoked it, I had NO CLUE how to get it. I wondered if I should ask my doctor. Some oncologists are all for it, others not so much. Mine had not mentioned it at all. Being a "good girl" by nature, I felt weird going to my handsome blond oncologist with the brilliant white teeth and going, "Yo, dude. Can you give me a script for weed?"

I was kind of at a loss.

(So we've reached the part of our story now where my beloved brother THE COP can stop reading, thank you.)

Luckily for me, a good friend messaged me one day to say, "Yo, I know a guy." That may not have been an exact quote, but pretty close. My friend gave me all the details. This particular person is not actually a guy, but a woman. She sells pot in all its varieties. One of her clients happens to be an epileptic 7-year-old who has fewer seizures when she eats her "special" cookies. She has several chemo clients. So she definitely provides a public service.

I thought long and hard about the options and settled on oatmeal raisin cookies. I have a weird thing about inhaling carcinogens into my lungs--particularly when my chest area is already riddled with cancer cells--so I didn't think I could smoke it in good conscience. I am not a huge chocolate fan, so brownies did not seem all that appealing. There was also Monster cookies as an option. Again, not a fan of chocolate. So oatmeal raisin cookies seemed like the best choice.

I paid $50 for a dozen cookies and had them in my possession in a matter of days. I carefully unwrapped them (they were amazingly, professionally bagged) as the aroma (and I'm not talking raisins) filled my kitchen. I quickly shoved them in a Ziploc freezer bag, wrote a cryptic "DO NOT EAT!!" on the bag with a Sharpie marker, and hid them away in the back of my freezer for another day. I had the cookies in my possession for a full week, too nervous to try them.

As I said in my last blog, I've been better able to control my nausea with medication this cycle. However, for a few days, I do have a constant queasy feeling in the pit of my stomach. It's not enough to send me running to the toilet, but it's enough to be annoying to this nausea-hating girl.

So a couple of days ago, I decided to bite the bullet. And bite the cookie. I placed the cookie on a pretty, appealing dessert plate on my kitchen counter to thaw. (It's all about presentation, right?) Then I sat at the table with a tall glass of water and one rather small cookie.

Remember me saying previously that I have a pretty strong gag reflex? Well, I took one bite of the cookie and obviously, immediately gagged. I quickly ran to the kitchen sink, certain that I would need to spit it out, but somehow, against all odds (and with healthy gulps of cold water), I was able to swallow it.

IMPORTANT NOTE: Oatmeal raisin pot cookies do NOT, in fact, taste like oatmeal raisin cookies. Rather, there is a very slight cinnamony raisiny sweetness followed by the intense flavor of front lawn. Yes, it tastes like I would imagine my lawn would taste if I felt the sudden, unprecedented need to chew some cud.

I was able to choke the small cookie down after about 15 minutes--with a few more gagging episodes in between.

It was a chore, but SO worth it, right?

Yeah...not so much.

I did feel the effects of the pot. I felt a brief sort of lightheaded silliness, followed by an intense desire to eat everything in sight. Considering that I was all alone in the house, the silliness was not particularly enjoyable--to me or my dog. And considering that eating large amounts of food in one sitting contributes to my nausea, that was equally unsatisfying.

Then I fell asleep.

Kind of a non-climactic ending to the story, huh? I thought so, too.

I must say that I do not feel I was really missing anything all those years I opted for Mountain Dew. Perhaps the pot you smoke is more pleasant than the kind you eat in cud form? But again, I don't like to smoke. So maybe I'm just a fuddy-duddy after all. At this point in my life, I am strangely okay with that. I will stick with my Bourbon Sours.

Considering that I really have no trouble sleeping during the week following chemo, I am not sure that the effects of the cookie were worth the effort involved in eating it. That said, I do plan on holding onto the cookies. After the initial 4 cycles of AC chemo, I will start weekly Taxol infusions. There are fewer side effects with the Taxol, I am told, but severe joint pain can be a debilitating side effect.

Those cookies may just come in handy after all...if I can get aboard the cud-chewing train. 

Sunday, April 24, 2016

Holy Fatigue, Batman!

I came to a rather startling conclusion in this, my third week of treatment for breast cancer. You might want to sit down for this one because it certainly took me by complete surprise.

Chemo is NOT fun.

I realize this may sound like an obvious assumption, but look at it from my perspective. A busy mom of three. Always running here or there. Laundry, groceries, karate tournaments, choir concerts, violin recitals. Kids who always expect to eat. Three times a day, even! A few weeks laying on the couch watching Netflix did not sound like an altogether unpleasant notion.

I am here to say right now that I was completely wrong. Stupidly wrong.

This week, I've managed to control the nausea that plagued me during the last chemo cycle much better. I am not a person who likes to take pills. Perhaps because I come from a long and distinguished genetic line of addictive personalities, I am kind of weird about taking pills...drinking too much...gambling...I am weird about all life's exciting vices. BUT, I learned this week that if one DOES take the "as needed for nausea" pills as needed for nausea, they actually work. By taking the as needed pills preemptively, I've managed to really control the nausea this time around. Weird how medicine works, huh?

So with the nausea under control, this week should have been a breeze. But it wasn't. I was hit this week by that ugly fatigue that everyone talks about with chemo.

Let me tell you, this fatigue is like nothing I've ever felt in my life. It's like some sort of weird half-life that you sink into and cannot seem to climb your way out of. It's like a fog that envelops you. You know that life is going on around you, but you are too tired to care. Too tired to take notice, even.

When I was in college, I got really drunk one night on fuzzy navels in my friend's dorm room. It was probably the most I had ever drank in my life (previously or since) and I ended up spending most of the night paying homage to the porcelain gods in the girls' dorm restroom. That same night, I wore a sweatshirt that said DUCKHEAD in large letters across the chest (stylish in the early 90s, believe it or not), and spent the entire night repeating over and over, "It's a D! It's a D!" To this day, my college friends refer to me as Duck. And to this day, I cannot eat or drink anything peach-flavored or scented. Ruanita just went to the grocery yesterday and bought peach-scented face wipes. I may be ill. But that doesn't really matter to this story. The point is that, after being carried to my room by a couple of athletes I had never met and to this day cannot name, I slept until late afternoon the next day in a sort of alcohol-induced, chemically-dehydrated stupor that is the only thing I can think of in my lifetime that comes even close to the chemo fatigue.

It is all-encompassing. The simple act of rolling over in bed is exhausting. And I had no interest whatsoever this week in watching Netflix. Keeping up with the story line of any television show was too taxing to even attempt. Most of the week was spent laying on the couch with my face buried in the cushions and my back to the television (and the world). I could hear what was going on around me, but I couldn't seem to stop myself from drifting in and out of sleep. I was totally checked out.

I did try to get out on Friday. I was hungry (maybe the first sign of digging out of the stupor?), so Ruanita suggested we go to a local burger place near our house and have lunch. I donned my trusty cap and wrapped up in a sweatshirt to head to lunch. Walking in, I was acutely aware that I was not nearly as spritely as Queen Elizabeth, who had celebrated her 90th birthday the day before. I had to ask Ruanita to carry my purse because it was soooooo heavy. I heaved myself into a booth and thought, right then and there, that I would surely pass out from the sheer exhaustive will it took to walk in. Picking my legs up to walk took concerted effort. I had to physically fight the urge to climb up onto the table and lay down. Queen Elizabeth would have been absolutely mortified.

I did manage to order a meal. I took one bite of my burger and immediately gagged on it. I didn't attempt a second bite and it became Ruanita's 2nd lunch later in the day. I managed to choke down a few Jo-Jo potatoes (my personal favorite), so I felt accomplished in that regard. We cut lunch a bit short, and afterwards, I took a completely unconscious 2-hour nap on the couch. I do not think it could quite be called a successful outing. Probably too much, too soon.

Today, I am finally feeling a tiny bit of my normal energy seeping back in. I'm still tired, but today's the first day I've successfully been able to string together a coherent sentence for this blog, so I'll take it. I used to complain about having no energy, but I am so freaking excited to get back even a fraction of my previous sedentary-sit-on-your-ass-lazy-fat-girl energy. I would pay large sums of money for Queen Elizabeth's 90-year-old intensity at this point.

I never believed that the fatigue could quite reach the level of how I had read it described.

I am a firm believer now.