Generally, I'm Not Afraid

I am a Stage 0 Breast Cancer survivor,

but I was diagnosed with Breast Cancer when I was already a Stage 3 Colorectal Cancer patient. I can’t really attest to the fear that goes with a Breast Cancer diagnosis, because I had already jumped 3 steps ahead of that in a separate cancer arena.

For me, being Stage 3 was terrifying. I kept waiting for the other shoe to drop and when it did, 8 months after my CRC diagnosis, I can honestly say there was a smidgen of relief.

Maybe even more than a smidgen, maybe even a tad. 

Anxiously waiting for something horrible to happen is, in my mind, worse than having it happen. And so here I am. 2+ years into this Stage 4 CRC diagnosis, surgery not an option, already using up second line chemo and generally, I’m not afraid.

Don’t get me wrong, there are those moments of fear- how bad will the treatments get?  How much will my liver swell and my lungs clog up?  How painful will things be?

Will my kids remember me as I was before I became a burden to them? Does my husband ever see me as more than a cancer patient? Will his memories of me be only that of disease?

I wonder what my grand kids would look like. I wonder if my kids will even have kids. 

-Now look, I realize no one knows their expiration date, but let’s be honest here,  a diagnosis of Stage 4 cancer definitely puts things in a different light to say the least.

That bus you could  get hit by?

My bus is charging full speed ahead AT me and it doesn’t give a damn about stop signs!-

So tell me, who's going to replace the La Croix in the fridge when the last one’s gone? Who’s going to buy the Christmas presents and make sure my adult children still get Easter baskets and Valentine’s Day cards? 

Wait! 

Who’s going to marry my kids? 

Better yet! 

Who’s going to marry my husband?! 

(She better be far less attractive than me and good to my kids is all I have to say on that one.)

See? Things can get pretty hairy in here, but like I said-generally, I’m not afraid. 

Generally, I have way more than a smidgen or even a tad of hope.

I have a big life that’s worth living now.

I have family and friends and enough health, right now, to fully enjoy them. I

have friends in the CRC community that I rely on and that can rely on me.

I look for ways to engage and inform and advocate whether through social media or in the cancer center or even the grocery store and that gives me power over this mess and a feeling of accomplishment over this thing that’s trying it’s damndest to take me down. 

Educating those without a clue about this disease and advocating for those with it, is treatment for body, mind and soul and let me tell you I feel the benefits of that everyday. 

And so, it’s true, I have Stage IV Colorectal Cancer, 

BUT

I also have an enormous heap of hope. 

And generally?

I am not afraid.

And most assuredly, 

I AM ALIVE!

If you can't walk the walk....

I've been on maintenance chemo now for 3 months. My last scan made it look like I may have new lung developments, but my oncologist is not convinced. My pelvic issues have remained stable from their initial decrease from the FOLFIRI. It was that decrease that had me ask to go on maintenance. I do not want to use up all my chemo options just yet. I was hoping the break from Irinotican would make it so that I could use it again if need be. I won't know more until my next scan in December. In the meantime I'm in the process of getting a second opinion from Cleveland Clinic. Although I trust my team implicitly, I just need peace of mind that other specialists would agree we're on the right track.

My summer started out with a bang with a birthday party thrown for me complete with dancing, drinking and drag queens. We spent a weekend in my happy place. We saw concerts and art show openings. We did a river cruise and ate brunch on the top of the Hancock. We went to Georgia to watch our youngest compete in a national barrel racing championship. We went to hot dog festivals and market days. We went to the theater and had pool parties.
And finally I went to Italy.
For 2 1/2 weeks I roamed the streets of Rome, Florence, Lucca, Tuscany, Sorrento and Venice. It was a dream vacation and a another bucket list item checked.  While in Italy 3 members of my CRC support group passed. And once I returned home it became clear several others were nearing their time. This is one of the heartaches you experience being a member of a group like this, but I need this group and so I deal.

I returned home from Italy depressed. I don't know if checking items off my list makes me feel closer to death or just hearing about others passing is what brings it so close to home. I'm sure it's a combination of the two, but it's almost mid-October and I'm only now hoping that I'm seeing a bit of light from the dark, dark tunnel I've been in.

A couple weekends ago we did a colon cancer benefit walk. Last year, a couple months after my liver resection we did the same, but these 2 events were completely different on a personal note. That first event brought about tons of family and friends, this one not so much. I couldn't help but think perhaps I've overstayed my welcome, perhaps my disease has become boring. Was I not expected to make another year? Are folks wondering "Oh geez, how many more of these will we have to do?!'.

I don't think I've touched on here about my BFF that disappeared. I knew this woman for well over 20 years. She was at the births of 2 of my 3 children and as soon as I got diagnosed, she became less and less a part of my life. I eventually gave her the chance to turn things around. Cancer is scary, I get it. I'll help her through my diagnosis I thought, I'll help her be a better friend. She did not take me up on that offer and for months I cringed as I saw all her happy-go-lucky Facebook and Instagram posts. I wanted to delete her from life entirely as time wore on, but didn't have the courage. It's strange, I'm assuming she didn't remove me from her social media, because who could do that? But I also strongly believe there is a curiosity to peoples' illnesses. Like that car wreck you just can't help but look at. I have  acquaintances from my past try to friend me on social media just because they found out I was ill. I've had old friends of friends try to friend them so they could glean information about my illness. Is it a feeling of keeping it near will keep you safe? Like there's my 1 in 20, now I won't get cancer! I'm not entirely sure, but I don't like it.

(So this next bit may come across a little crazy, or too worked up. I promise you I am neither of the two. I request that you read it with humor in your heart because it is funny. Know that I am fine and not angry. And remember, it's funny because it's true.)

After this last walk, when I realized many of my family and friends could not be bothered with joining us for, or even at the very least donating a little something to, this cause, I quit. I quit caring that, from this specific group of people, I never got a call, a card, or even a mother fucking Facebook message or phone text.

I lost a dear friend from cancer. Although I'm 100% sure I did not do all I could have for her, I am also 100% sure I tried. When I have people I've never even met in person paying more attention than people I've known for at least half my life, well, that's a real eye opener.

The walk was the last straw. I've had this disease since 2015, if you haven't stepped up yet, you're probably not going to. Or if you're just waiting for the shit to hit the fan, then fuck you. You suck. I finally decided I could cut them free and I would be so less annoyed and so less hurt. So I did.

I deleted them. No wait, actually I BLOCKED them because damn if I'm going to let them "share" in my experience. Damn if I'm going to let them think this thing is transferable. Damn if I'm going to let them think they are a part of this. And there's absolutely no fucking way am I going to satisfy their curiosity.

And since that day I've been feeling better. Less depressed. And let me tell you, the actual act of BLOCKING was more than cathartic, it was empowering. I went through my friends lists several times to make sure I got rid of all of them. And the more times I went through, the more people I found to block.
Hey lady from the horse barn, how come whenever you ask anyone a question you appear as if you don't really have the time to listen to the answer? And why on earth would you wish someone (not even me) a happy birthday on Facebook without any capital letters or punctuation marks?! Are you seriously just saying "happy birthday"? What is that?! BLOCK.
And hey, ex-neighbor, the one I gave all my kids' mini-boden clothes to when they outgrew them, the one I got a job for, who did nothing ever that I can remember that wasn't mostly shitty to me and mine, I'm sick of you. Plain and simple. You bore me and I don't want to look at your face anymore. BLOCK.
Hey wife of that super nice guy that's in my friend's husband's band. Shut up. Just please shut up. You say stupid shit and make people uncomfortable. BLOCK (but not your husband).

I'll bet I sound like a petty bitch right now, but boy-oh-boy, do I sound like I care? I didn't think so.

And hey, all you BLOCKED people, this is not just a social media block. You are banned. You are done. You are outta here! I will be planning my Celebration  of Life party (and I plan a real good party, by the way) and my dear, sweet and obliging husband has been specifically instructed to kick your asses to the curb if you even think about coming  and to happily say with a smile, while kicking your asses, "I'm really, really sorry. Lari's making me do this."

Stage Four Forever More

December-time for my last appointment with my oncologist before she moved! She relocated to Colorado pretty much after this visit. I went in and did the usual and was about to leave after a nice long hug when I remembered to ask "Did you take a CEA?". I hadn't had a CEA since after my colon resection because this onc (and many others) believe them to give off false results during treatment that  just create undue anxiety and stress. She remarked that she was sure they had taken one and so I was on my way. I was almost out the door when I was called back by the nurse. "We didn't get your CEA! Come on back and we'll do it now."
Next morning, sound asleep, dreaming of how I'll spend my cancer free years, my cell phone rings and my oncologist's name glows on it's screen. I thought maybe I forgot something there or maybe she had a different referral, but no. She said "Your CEA is up. I want to do a CT." I was shocked. I asked 'How up?" and she said "22.4". My CEA was just 2.4 with a 3 cm tumor in my colon. This couldn't be good.
I immediately scheduled a CT which suggested a 3 cm lesion in my liver and then sometime later I had a PET which confirmed it. Christmas came and went and surgery was scheduled for shortly after bringing in the new year.
It was devastating, but there was a glimmer of hope. Many folks had had a single liver met and had passed the magical 5 year mark scot free. And I was lucky that I was able to have surgery in the first place.

The liver resection recovery was very difficult and there are all sorts of memories I could share that took place during my 7 week recovery, but I won't. I found my own new oncologist, scanned and did blood work every three months. We bought an Audi, put in a pool and decided to live every minute to its absolute fullest!  I lived a life of NED for the next 11 months until November rolled around (what is it with these holiday months?) and my CEA started to creep up. First to 5.6, then  December's was 7.8 and finally January's scan and 13.8 CEA confirmed the cancer was back. I knew it was back from the first 5.6 reading. I had pain around my liver and was convinced I had a met there even though the scans kept coming back NED. It turns out we were both wrong, those earlier scans and I, not only did I have 2 new mets in my liver measuring 1.1 and 0.7 cm, but also an increase in size of an iliac chain lymph node last measuring 0.6 cm now measuring 1 cm, some perirectal soft tissue nodules were new or increased in size, representative measuring approximately 1.9 cm and last but not least, nodularity along the dorsal surface of the uterus had progressively increased in size. Sounds deadly doesn't it? I thought so too rereading it on the floor of some hotel lobby that was next to the coffee shop I just ordered from. But over the next few days I started thinking about the lymph node, the soft tissue nodules and the uterine nodularity - and  just wasn't convinced. Nothing seemed very specific on the CT and none of these things had ever been mentioned before. I demanded a PET which confirmed the findings of the CT, but never listed SUV numbers which left me still unconvinced. But the decision was made to start chemo straight away because if indeed those other things were mets, we didn't want to wait to recover from surgery and give them the chance to grow.My new onc says I have what they call "a low tumor burden". This is good news and means I might get a few years out of this mess. My new nurse practitioner envisions me on a maintenance regimen for years demanding breaks here and there so that I can feel good when I travel. I hope they're right.
I had to have  a new port put in because mine was removed during my double mastectomy, but demanded they knock me out this time. And they did. I demand a lot these days. You have to.

So this brings us up to date. I'm currently working off my third treatment of FOLFIRI (aka FOLFURY by those in the know) and my second with Avastin. I am hoping beyond hope that this will shrink something and other options will come along. It is rough going and when I'm in the middle of it I wonder if its worth it. I got a second opinion from an aggressive surgeon at UCSD who agrees with the plan for now-get 4 treatments in, scan and see where we are. As far as this blog goes-from here on out we should be talking in real time. I'm losing hair again , but that's ok. I'm alive and feel well most of the month. My middle child has been accepted to college and my youngest is driving. Life is good. And I'll rise up.

Happy No Mo Chemo

We celebrated the end of chemo with a trip to Vegas. Not our first choice, but there was a business conference so much of the celebrating could be considered an expense. I had shaved my head the night before my final chemo when I watched a video of myself dancing under lights that somehow were able to show how much hair I had actually lost during the past 6 months far better than my own bathroom lights could. My double mastectomy was scheduled for shortly after our return and so we tried to fill in as much fun as possible.
I managed a few pretty full days as long as I had a complete day of rest in-between. I scheduled a mani, a pedi and a massage; we ate at the best restaurants and talked about paying as much attention to my soon to be gone breasts as possible.
The day we returned I cried. I was just not able to keep up with Jim and the luggage. I remember the transport driver yelling at me to hurry up. And then I remember crying from the pure exhaustion of it all. Something so simple as scurrying through an airport, or going to lunch, or making it to the party the final night of the conference had done me in. I was a shell of my former self and the thought of more surgery just made me all the weaker.

I cannot even tell you the date of my double mastectomy. I know it was in November. I think it was after Thanksgiving, but I'm not sure. That is how inconsequential it became to me. I still mourn the loss of my breasts to this day and the trauma I went through losing them, but it compared in no way to what was to come next.


 . 

No, Thank You. I'm Not Thirsty.

This is me clowning around with my friend the mammographer-you can't see her in this pic, but I promise you she was there. There are things you want to get done when you have to have chemo. I got my teeth cleaned, had a pap smear and colored my hair all before chemo started because those are things you don't want to do during your 6 month stint. My onc said I could do the mammogram later with no worries so I waited a couple months.

I have a friend that worked in the breast center at the hospital where I was receiving my care so I decided to have her do it instead of where I usually go. I've been getting mammograms since the age of 32 because my sister was diagnosed with Stage I breast cancer at the age of 36. The type of mammogram I was to receive this time however was called a diagnostic mammogram, you see you get special treatment when you already have cancer.

Things went as expected. I couldn't much tell the difference. The only real difference was the fact that when my friend left to have the doctor look at my pictures she came back and said the doctor wanted to speak with me. As it turns out my pictures showed something unexpected.
Because the mammographer is my friend I was able to see the doctor that day, because the mammographer is my friend the doctor scheduled a biopsy for the following day and because I am your friend I am going to spare you the details of that biopsy.
I will say I absolutely hope you never have the pleasure.

Turns out you can have 2 primary cancers at the ripe old age of 47. And I did. Turns out I had what's called DCIS. AKA Stage 0 breast cancer. Turns out the type of DCIS I had was aggressive and with a family history and high tumor grade it was strongly suggested that I have a double mastectomy. Turns out I had that mastectomy in November after I competed chemotherapy for Stage 3 Colon Cancer. Turns out life can sometimes keep giving you lemons even when you've had your fill of fucking lemonade.

What a Pain in the Neck

It was June and we went for a walk. I'd been experiencing some pain in my neck. Just bothersome, but noticeable. Earlier in the day I had had a nose bleed. My nose bled a lot because of the chemo, but this one was hard to stop. Later that night I couldn't sleep. The pain had become unbearable. My husband woke up around 1:00AM and noticed me missing. When he came out of the bedroom he asked if I was ever going to go to bed. "I can't sleep" I said. The pain was too much. It had been gradually increasing to the point where now I was unable to move my neck much. He insisted on calling the doctor. I told him I thought I probably had a blood clot. I'd been googling my symptoms and that's what it appeared to be. Once the doctor learned I had a significant bloody nose earlier in the day she insisted we get to the emergency room and about 7 1/2 hours later I was finally getting an ultrasound which confirmed I did indeed  have a blood clot. In my jugular. A result of my port. I was then prescribed Lovenox injections, which once brave enough, I injected myself , 2 times a day. I did these shots for 5 months. Sometimes I cried. But usually I went about what ever business was ahead of me. I've given myself shots in hotel conference rooms, at a dinner table in a crowded restaurant, in a car, on a plane, in a bar, you name it. What once seemed impossible, to point a sharp needle at my abdomen, push it through my skin and inject myself became old hat. Like everything else when dealing with cancer. You do what you have to do.

Ketchup with Billy Idol and a Side of Lobster Claws (Also Known as Not Your Neighbor's Chemo Part II)

I had sometimes forgotten about this blog. I had definitely given up on this blog. It wasn't doing for me what I had hoped it would. Reading other people's blogs was doing more, so I quit. I'm back now, but can't say for how long. I noticed I last left you hanging on what could have possibly happened at my 2nd chemo. I think I will play catch up slowly, because it is one year and a couple of months after my diagnosis and you would not believe what can happen in a year.

Chemo #2 started with .05 Xanax and a positive attitude. Having gotten through the first round I was ready to move on. But let's cut to the chase, we already know this isn't going to end well- this time with 8 minutes left in the bag  the vomiting began. As I tried to leave the facility my calves cramped to the point in which I could not stand or walk and my hands cramped into a clawed position. I was again wheeled out of treatment.
When I finally made it home, I slept for a couple hours and woke up feeling less nauseous, but I was still claw handed.

The next 2 days consisted of tingling, clawing, and leg cramping so severe I had to be carried to the bathroom 100 yards away. The cramping in my calves made me look like An American Werewolf in Paris, my muscles stiffening and undulating to the point they looked as if they may burst out of my skin. And the pain. It was unbearable.  All symptoms continued through the week and by the end of the week, although I was finally able to walk unassisted, the pain that resulted from the cramping had made it almost impossible. Things were so bad we videotaped them, just to be sure it was all normal and to be expected, because at one point when I suggested to Jim these drugs were going to kill me, I wasn't kidding.

A variation of these symptoms and many more continued up until right before my next scheduled infusion 2 weeks away. And so at that visit, with video in hand and many stories of what had happened over the past 2 weeks, stories like how my lip curled up all on it's own like Billy Idol's and STAYED THAT WAY, or how the muscles in my calves cramped visibly (not too mention incredibly painfully) for hours on end, or how walking was something I could not do on my own until about a week and a half past treatment..., my onc said I was done. No more. No more Oxaliplatin (the wonder drug, the golden standard!). She said that what I had experienced was more than unusual, that it was in fact, deadly. She said that this drug would not do me any good if it killed me first.

What?! The golden standard gone?! No discussion?! No adjustments?! That's it? I'm out?

I begged for a a couple more rounds. Or how about reducing the dose? What about supplements to help with the side effects? No, no, no.

You have to understand that cancer patients want it all. No matter what they've gone through they'll go through more if it means even just a 2% increase in survival, but she wasn't having it. After viewing the video, the only word that came out of her mouth was "Scary.".

And so, relieved, but scared shitless to be letting go of any part of my treatment, I continued chemo with just 2 of the recommended drug protocols. 5FU and leucovorin. I got through the next 10 rounds with side effects, but side effects I could handle. The next 6 months should have been a cancer patient's version of a walk in the park-also known as torture, humiliation, disappointment, pain, (which is still far less than most cancer patients experience) you get the picture, but in reality it was actually quite worse than that.