Measuring my Growth

Hello everyone! I’m so so SOOO terribly sorry that I’ve been absent from my blog for such a long stretch of time. I just recently started back to work in a new career (woohoo!) but that transition was tough. So I really had to take some time for myself to focus on my career and my future. Delving into a new job is always tiresome, as I’m sure everyone can relate to, and I really needed to focus my efforts in that direction. So I apologize to you all for being MIA!

But starting down this new path was such a relief. Having been so focused on treatment and healing and cancer this and cancer that…I relished the fact that I could take this other path and stray from the one that had been under my feet for so long. It’s nice to pretend to be normal, you know? I get up, go to work, have lots of things to keep me busy during the day and try to avoid thinking about the past.

Like all of this was a bad dream and that I never had cancer. “Mela-what? Not here!! No siree, absolutely no mela-whats-its in THIS neck of the woods!”

But the truth is that cancer has changed my life. No matter how hard I try to pretend like I’m the same ol’ me, I’m a completely different person. I’ve become much more introspective. I care more about people, and I care more than ever before about my patients, family, and friends. I know that every second I’m on this earth is a second to be cherished.

So mentally, I’m very different. But what about physically? Yes, I still have the scars, although I swear they’ve faded dramatically since I’ve been putting a special essential oil mix on them every day. And my leg still has lymphedema so I’m wearing a compression stocking daily. I’m flying a lot for work, and on travel days I wear 2 stockings…not super pleasant, but it sure is better than letting my leg swell up.

And I also have been VERY excited to notice something else that’s been changing.

 

Slowly, every so slooooooowly, my hair has been growing back in!

Look at all that new growth!

 

 

Can I get a HECK YEAH!!

I noticed all these little fuzzies (yes, I call them my fuzzies) when I was blow drying my hair a few weeks ago. I couldn’t get them to sit down – it looked like I had put my finger in an electrical socket. (I think the static electricity of the winter months made it worse, but even today they’re straight up!) And look at all those little baby fuzzies!! It looks like I have a whole new head of hair growing in!

All my new fuzzy buddies

Aren’t they the cutest??

So for all of you out there going through treatment – it gets better. What you’re going through is incredibly hard. I know some days I didn’t make it off the couch. When I had the energy to take a shower, my hair came out like I was molting. I lost so much weight that my husband got super worried and actually talked to the nurse about it.

But after treatment, it gets better. Just hang in there. Your body is an amazing thing. And you WILL heal. You may not ever be the same, but you will heal.

And that which does not kill us can only make us stronger.

Acceptance

WOW. What a summer! I know it has been forever since I have posted, and I’m truly sorry for not keeping everyone up-to-date.

This summer has been filled with LOTS of highs and lows. Lots. My second (and last) infusion of the Ipi/Nivo combo was in May, and holy moly did I have side effects after that infusion. Uncontrollable nausea and vomiting, diarrhea, crazy high liver enzymes, and generally lousy feeling. My weight dropped down to almost 100 lbs because I could’ve keep anything down. They stopped treatment and put me on steroids to get my liver enzymes under control.

While on steroids, I had lots of other (scary) side effects. I developed hand tremors, arm weakness, anxiety swings, heart palpitations, crazy sweating, and really felt like I was jumping out of my skin. We thought maybe my thyroid was being attacked by the immunotherapy. Endocrine labs and MRI all came back negative. So the team figured it must be the steroids, so we should wean at a decent pace.

Once I got off steroids, I felt great! I had gained my weight back and felt totally normal (still with a newly developed caffeine sensitivity, but I can deal with that!) I had my 3 month PET scan, and everything has shrunk dramatically!! WOOHOO!! I was on cloud nine!!

Frankie being embarrassed because he got caught snuggling with his teddy!
Frankie being embarrassed because he got caught snuggling with his teddy!

Then came the conversation with the oncologist…the dreaded “what is the game plan” conversation. I knew the great news that things were looking very positive, but now what? Everything I had read said that the next probable step would be to go back on Nivo alone as maintenance. So I was expecting the conversation to lead that direction.

And I was super surprised when it didn’t. My onc was incredibly honest when he said that my earlier steroid-induced symptoms seemed very much like a central nervous system autoimmune disorder, and he was afraid that if we go down the maintenance path, we could run into some serious side effects. I knew this was a possibility, but that’s when I realized it may be more of a reality, and my mindset changed. Having worked with neurosurgeons, I have also worked with neurologically impaired patients, and that’s a terrifying proposition. I might be cancer free, but at what cost? Will I be able to walk? Feed myself? Will the tremors come back and remain this time? When the side effects were at their peak, I couldn’t hold a cup of coffee without spilling it all over the place…would that remain permanent?

Yes, this is a big gamble. NOT doing maintenance doses might mean that my melanoma comes back, bigger and badder than ever. That’s a possibility. And I’m not taking that lightly…trust me, that’s on my mind during my sleepless nights. But I’ve decided to choose quality over quantity. I’d rather live independently, be able to do the things I love, and not go back to the side effects and the possibility that they remain permanent.

Perhaps I’m also following this path because I have accepted my melanoma diagnosis. I accept I will live a shorter life because the melanoma will come back at some point in time. These are the odds, plain and simple. I have told my husband, I’d be happy to get in another 15 years and make it to his retirement. Just last year I was handed a very poor outlook on 5 years, so 15 looks darn good to me. I’ve had some pretty bad side effects, and the side effects are way worse than the cancer itself…so why push the envelope, just to get rid of some possible crumbs of cancer still hanging out?

It truly is amazing, the ups and downs we go through with treatment. The “what-ifs” we face are truly daunting. I know it’s incredibly difficult, but acceptance of my diagnosis has really helped me face some very difficult decisions. We use words and phrases like “keep fighting” and “win the battle” with our diagnosis. I will always keep fighting for myself and for others, but I must ask you, have YOU fully accepted the consequences if you lose this fight? Every battle has a winner and a loser. There is no guarantee that a valiant fight will win the battle. I’ve accepted that moving forward is the only direction to go, so I will keep fighting, but I also know that my best efforts may not be enough. I’d rather fight melanoma on another date, at another time, than the possibility of more permanent side effects from keeping up the treatment. This battle, for now, has been won. But I know the war is not over.

Joining the Living

WHEW. I can’t believe it’s been so long since I’ve posted!! I had a run-in with some side effects, and man they knocked me down. HARD. I’m just now coming back to life.

I had my second infusion of the Ipi/Nivo combination May 6th, and everything had been smooth sailing. Then I began having mouth sores. Very uncomfortable to eat when your mouth is raw. You find out very quickly what foods are acidic due to the burns they inflict (apparently strawberries are more acidic than I previously thought, for example). This was uncomfortable, but totally do-able. Then came some diarrhea, which was (mostly) controlled with Immodium. Again, not fun, but I could work around it.

The first strawberries from the greenhouse! Hope my mouth is healed before they ripen!
The first strawberries from the greenhouse! Hope my mouth is healed before they ripen!

But then the whammy…nausea. UGH the nausea! It was like what people describe with seasickness, just minus the dizziness. A constant uneasy, stomach churning feeling, and I must have been vomiting or dry heaving 5 times a day. I didn’t want to eat, I couldn’t eat, and everything I ate left my system extremely quickly from all exits. I lost about 7 pounds in a week and a half. I wouldn’t suggest this as a diet, though, unless you want to severely punish yourself. But I trudged onwards.

The final straw was my blood work. My liver enzymes came back as 7x the normal limit. Oops! So FINALLY they decided to delay my 3rd treatment and put me on steroids. 2 weeks of torture, but I made it! And I’m now feeling like a whole new woman. I’m full of energy, hungry for the first time in weeks, and ready to take on the world! This could be the ‘roids talking, but hey, I feel great!!

It’s so hard to be so incredibly sick for an extended timeframe…you feel like you’ll never be healthy again. Your energy drains and your whole body is racked, so tired that your SOUL is tired. So tired you’re not sure how much more you can mentally and physically take, to the point where you contimplate “am I OK with taking a nap and not waking up?” Enduring so much physical hardship is incredibly difficult, and I have a new respect for my body and what it can handle. Cancer is no joke, but the treatments available are even more brutal. If one doesn’t get ya, the other one will.

Frankie helping me heal on the couch
Frankie helping me heal on the couch

So everyone out there – show your cancer buddies some love. You don’t have to understand all of the side effects to understand that your significant other/family member/friend is going through some physically tough times. Bring them soup. Offer to mow their lawn or take care of their pets. Take over funny movies to watch together. Just helping in the tiniest little ways makes a huge difference in their healing process, and that’s what we all want. We just want to heal.

There’s good news and bad news…

Whenever there’s good news, it has to come with bad news. It’s the Ying and Yang of life. One step forward, two steps back. Karma always has a way of showing us what life is all about!

 
So, the good news is my scans were (mostly) clear! Woohoo!! There are 2 questionable in-transits near my primary melanoma, but nothing systemic, so I’ll take it! We are going to watch the 2 spots in the meantime, and if there’s any growth, a biopsy will show us what path to take. But no spread into any organs means I’m still stage IIIC! I’m a happy girl 😄

 
And the bad news. My liver enzymes have skyrocketed with the Sylatron treatment. I’m over 5X the normal range! Yowza! My platelets are down a little, as are my white blood cells, but nothing compared to the changes in my liver. So I have to skip a week to try and bring my enzyme levels down.

Who needs normal liver enzymes?! Seriously...
Who needs normal liver enzymes?! Seriously…

I’m torn as to being glad and upset on skipping a treatment week. I really wanted to push through the tough first two months of the treatment and get the most out of the cancer – killing high dose of immunotherapy. I imagine the Sylatron like a whack-a-mole, killing the cancer cells as they arise. But without the treatment, I imagine the cancer cells popping up with no whacks! There isn’t a mathmatical efficacy calculated for skipping doses, so there’s no telling what skipping a dose means for the cancer returning.

 
Yet, inwardly I’m glad I get a break. I’ve been exausted the past few days and the nausea comes in extreme waves. One second I’m starving, the next I could puke. I have headaches, I cant focus, my teeth hurt, and my jaw gets tired from chewing (I know – weird, right?) My body is tired from its constantly heightened cancer – whacking state. I know I’m stubborn, but I don’t know how much more my body can handle.

 
So I get a break from the immunotherapy for a little while and celebrate my clean scans from the couch with the kitty!

I can only hope to one day strive for this level of contented laziness!
I can only hope to one day strive for this level of contented laziness!

Week 2

This week is going much better than last week!! Hooray!!

No flu-like symptoms. No fever spikes. No feeling gross or being stuck on the couch. I’m sleeping much better at night (thanks to my doctor-prescribed pharmacological help AKA Ativan). And my daytime brain fog has gotten much more tolerable. I’m still forgetful and have to make lists, but I don’t feel like a zombie anymore.

My biggest side effects from the immunotherapy now is the fatigue. The fatigue is for real. My cat Tamarin feels it, too!

Cat nap!
Cat nap!

I’ve been volunteering at the humane society, and on Tuesday I helped clean the dog kennels. It was probably about 15 minutes of low-exertion work. Afterwards, I could have napped with the dogs, I was so tired. And today, just 30 minutes of yoga left my arms and legs burning as though I just ran a marathon. I actually took a 30 minute nap afterward.

My oncologist did mention that fatigue is a major side effect. And I can definitely see now the true definition of fatigue…and it’s for real.

So it looks like I’ll be taking naps for the next 2 months! Here’s to (cat) napping!