Hiding From The Sun

CoppertoneI love the sun. I (like most in my generation), was a sun worshiper when I was a kid. Remember when a bad sunburn was a badge of honor? Remember using baby oil to make sure you soaked up every last ray of sun and being appalled when “sun screen” was introduced? Why would anyone block the sun if they were trying to get a rockin’ suntan for the Summer? And later on in life, when you were too busy to “lay out,” remember how easy it was to cough up some dough and bake yourself every day in a tanning bed?

To be honest, especially lately, I long for the innocence of those days. Ignorance was truly bliss. Because the reality of what all of that sun exposure costs has hit home in such a personal and devastating way in the past year that I wish I didn’t know now what I didn’t know then.

The sun exposure John had as a kid growing up on a Burbank, Washington farm wearing as little as possible and then all of his life working outside is what caused his Melanoma. It always starts with the sun. That’s what his oncologist told us. Even though John has what they call an “unknown primary,” meaning they never found the original lesion that caused his cancer, it was there originally. And the sun put it there.

And now we’re faced with truly hiding from the sun as he begins a new drug called Zelboraf within the next few weeks. The biggest side effect of this drug is extreme photosensitivity (meaning he can get a blistering sunburn in less than 10 minutes if he’s not protected). So we’ve stocked up on Columbia long sleeve shirts with SPF 50 build right in (who knew they made those?) and SPF 90+ (who knew they made that?).

BRAF DiagramZelboraf is a drug that address the BRAF mutation John has. Basically, this genetic mutation switches off the reproduction “brakes” in a cell so the cancer grows more quickly. Zelboraf re-connects that brake and slows down (even stops) cell growth. We’ve been told that his tumor could completely disappear within two weeks. That’s the good news. The not-so-great news is that the effect only lasts about six to nine months, until his extremely intelligent body figures out what’s going on and finds a work around to switch off the brakes again. Then we’re back where we started.

But it buys us time, which is the best resource we have at present. The longer he hangs in there, the better the chances that science will figure out how to cure him.

We’re also hoping that the PD1 inhibitor drug (the one in the trial he was on that WASN’T making him sick) will be approved by the FDA by the end of October and he can get back onto that before the end of the year.

That’s where we are at present. We’re heading out on the boat tomorrow for our first (and last) outing this summer, while he can still tolerate the sun. It will be a normal Sunday Summer day for us, the kind we enjoyed routinely prior to this Summer. Finding normal moments in the midst of this situation that has completely changed our lives is our best survival mechanism.

So the next time you step outside (wearing AT LEAST SPF 30, PLEASE!!), stop and thank your lucky stars that you’re still able to turn your face to the sun and drink it in without worrying about anything. And savor those moments of normalcy in your day. You never know when they’ll seem like a sweet, distant memory.

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Back to Square One

step backwardWe got bad news about John yesterday. He’s stepping down off of the steroids too fast and the colitis is coming back. The doctor told us after he got out of the hospital that was a danger since he was putting him on an accelerated step down of 4 weeks instead of 6 in an attempt to keep him in the trial. Now they have to slow down the step down process, increase his dosage of the steroids again, and he won’t be able to continue with the trial next week. He’s not feeling sick, but the symptoms are coming back and we can’t risk that because if the colitis comes back full steam, it’s much harder to treat and can be extremely serious.

There were 2 drugs in the trial when he started and the one that caused the colitis was being discontinued if he had stayed on the trial. The PD1 drug that he was going to continue with should be FDA approved by October so hopefully he’ll be able to continue on it and his gut will be all healed up. Also, after shrinking to almost half it’s original size on the trial, the tumor on his leg has grown again and is bigger than it was when he started the trial.

I’m in Baltimore working with my partner Nancy this week and I won’t be home until Sunday. It’s been emotionally challenging for me to be away from home the past few days through this news, even though he doesn’t need me to take care of him. I’m focused on working this week and checking in with him a few times a day. My boys are keeping an eye on him for me as well. We’ll see his doctor on Monday in Seattle and find out what our next steps are.

All of this is disappointing to say the least. We’re focusing on what we can control and the options that are still available to us and taking things one day at a time. I’m fighting to stay positive because I know the alternative won’t support him or me. This is just a really big setback and frankly, it sucks. We were so hopeful that he’d be able to continue in and complete the trial and that he’d get great results from that. Now we’re back to square one.

The Puritan Approach to Cancer Treatment

Puritan-stocks-sqAfter a super harrowing week filled with cancer drama (in case you missed it you can read all about it here), I took my much-better-but-still-pretty-weak-and-pale husband in for his mandatory weekly clinical trial checkup with his Oncologist yesterday before we headed home to Walla Walla. We were anxious to find out what his recent health issues and hospitalization meant to his participation in the clinical trial and whether or not he would be allowed to continue.

After making sure we knew the current protocol for weaning John off of the steroids that are healing his gut (and this has to be done slowly enough so that the auto-immune colitis the trial drugs caused doesn’t come back, because if it does, it’s much harder to treat), his doctor told us John would be taking a 4 week break from the treatment. Once he’s off the steroids and assuming he’s back to normal with no signs of colitis, he’ll be resuming the trial for the final 4 treatments. He’s been on two different drugs and the one that’s likely responsible for the colitis won’t be continued. If he’s all well, he will get the final four doses of the PD1 inhibitor starting in mid August and continuing every three weeks until he’s done.

Here’s what we learned about the study and how it pertains to John so far:

  • It’s working. The lump in his groin has shrunk to almost half the size it was just two weeks ago (from almost 9 cm to just barely 5 cm). Needless to say, we were doing the happy dance over that (well, I was. John’s still pretty tired, but he was dancing on the inside, I promise).
  • There are six people in the study at Seattle Cancer Care Alliance and three of them (including John) have had severe colitis attacks brought on by the trial drug requiring hospitalization.
  • The three people who’ve gotten sick are having the greatest results as far as decreased cancer symptoms and the three people who haven’t gotten sick are not getting results from the trial. So sick is good.
  • Even if he can’t get back into the trial in four weeks, the PD1 inhibitor drug that is still in the trial is on the verge of being approved by the FDA so John could get it in the future if he needed it.
  • His doctor told us that it often only takes one dose of these meds to create a positive outcome, and John’s had two doses so far.

So, all in all, even though it was an awful week and we never want him to go through it again, if it’s killing the cancer, it’s worth it. It reminds me of a conversation I had with my brother Mark in the middle of his radiation treatment for stage IV throat cancer a few years ago (which he survived – he’s cancer free as of today). I asked him how he could keep going through the horrific side effects of the head and neck radiation he was getting and he said simply, “This is the treatment for throat cancer and the alternative is sort of final.” Well said.

So, as John’s doctor said on his way out of the room yesterday, “This is the Puritan approach to cancer treatment. The more you suffer, the greater the results.” We’ll take that, especially now that we’re (hopefully) on the other side of the worst of it.

Our Crazy Cancer Week (& By Crazy I Mean CRAPPY)

10525823_10152144181562657_8160840997533713494_nWe’ve had one hellofa week, and not in a good way. We came to Seattle on Monday night and John was feeling okay. Not great, but good enough to split a hamburger with me on the trip over and drive over the pass. His doctor was impressed with his improved health at his appointment on Tuesday and he seemed to be feeling pretty good so we headed down to Pike Place Market and walked around for about an hour (that’s us on the left). We sat down for lunch and about 1/2 way through it I literally saw him hit a wall. We paid, got in the car, and headed to Queen Anne Hill to our Hotel to check in. I watched him fade before my eyes and when we hit the room he laid down for “a 40 minute nap” and pretty much never got up.

We spent Wednesday in the room with increasing diarrhea and vomiting and me trying to find something I could feed him that would stay down. By Thursday, I called Seattle Cancer Care Alliance and they told me to bring him in. He saw the Oncologist on call and got an Johninfusion of fluids and some prescription anti-nausea meds to take with us. I had to be in Vancouver, B.C. by Thursday night for an all day speaking engagement at a convention on Friday and he wanted to come with me. It was a long drive up that night and once we go to our room, he collapsed on the bed and was pretty much out. He never left the room until we checked out Saturday morning, and then it was in a hotel supplied wheelchair because, after almost 5 days with virtually no food or nutrition, he was too weak to walk.

We had a very long, very challenging drive back to Seattle, including an almost hour-long wait at the border. We arrived back in Seattle and went straight to SCCA for another infusion and to see the doctor on call. His potassium, electrolytes, and sodium were all very low and he was severely dehydrated. At that point, I started posting more regular updates on Facebook.

Here’s that series of updates:

Saturday, July 19th, 2:00 pm Made it to SCCA. John is worse than ever. Very weak, disoriented, and almost panicked he’s so uncomfortable. My mama bear is taking over when we see the physician on call today & we’re not leaving here today unless it’s to go get a feeding tube or check into the hospital. I am not capable of taking care of him when he’s in this condition and we’re not spending one more night like last night. 

Saturday, July 19th, 10:00 pm John was admitted to the hospital at around 6:00 tonight. He’s severely dehydrated and they’re still not positive it’s the trial drugs that are causing it so they’re running tests. He’s on fluids and potassium (his levels of that were extremely low) and IV antibiotics. He’s been in and out but mostly asleep since we hit SCCA this afternoon at 2:00 and not real coherent. The plan is to get him hydrated first and then assess the nutrition issue (probably tomorrow). Their hope is that he can start eating on his own once he’s feeling better and won’t need a feeding tube or PIC line.

I’m just relieved that he’s in the hospital and getting the care he needs. I’ve felt so helpless the last few days. His daughter Chelsey Marie is in town and was a huge support today and his twin brother will be here tomorrow. I’ll sleep on a cot next to his bed tonight. Hopefully we’ll both (finally) get some rest. I know I sound like a broken record, but I so appreciate all of your support, prayers, and comments of strength and encouragement. Every single one means so much to me. I’ll post an update once we know more.

Sunday, July 20th, 10:00 am IVGood morning from the University of Washington Medical Center. I wish I could say there’s been a huge improvement overnight, but unfortunately John is still having very severe cramps and diarrhea. He was up about every hour or so last night but we did manage to get some sleep. He’s still running a fever of over 100 but Tylenol is helping with that. The Oncologist on call was in this morning and said she suspects these are, indeed, side effects from the clinical trial. Once they rule out other infection today they’ll start him on steroids to calm down his colon and try to get him back on track so he can begin to eat. He’s still not feeling like eating anything and the 2 bites of banana he did manage to choke down this morning came back up about an hour later.

It looks like we’ll be here until at least Tuesday and they’ve assured me they won’t discharge him until he’s eating solid food and keeping it down. My main job now is to keep his spirits up. He doesn’t want to lose his spot in this clinical trial and if we can’t get him well, he won’t be able to continue. He’s only had 2 infusions and has 4 more to go, so we’re not even 1/2 way through it. He’s obviously exhausted and feeling defeated. My personal focus is on getting through each hour of the day, one minute at a time. Posting these updates is therapeutic for me and the easiest way to keep everyone up to date on what’s going on.

That said, I’m looking forward to the time when I can post about mundane and humorous stuff about my life again, when every day isn’t a mini drama. I’m definitely longing for the life that cancer has stolen from us. I’m tired and frightened and honestly, just want my boring life back.

Sunday, July 20th, 8:00 pm Steroids started and John is much more awake and alert. The cramps are subsiding but he’s still pretty nauseas. We’re hoping to see a big change over night. He’s still far from back on his feet, but this is the first positive sign we’ve had for almost a week. The “official” diagnosis is auto-immune Colitis brought on by the clinical trial drugs and they hope to be able to control it with steroids. We won’t know what this means for his continued participation in the clinical trail until we meet with his oncologist but at least we’re getting his symptoms under control.

I took a break today while his brother and son were here and went with my step-daughter Chelsey Marie and her future mother-in-law to see her wedding dress, so that was a bright spot in my weekend for sure. It looks like we’re shooting for Wednesday as a discharge day, so please hold that vision for us. We’re both looking forward to getting home but know we need him to be eating and keeping down solids and feeling much more like himself before we can go home. I’ll update this post as I get more information but thought this would be an easy way to keep the updates chronological and easy to read. Thanks for all of your prayers and support. They mean the world to us and I, especially, feel more supported and loved every time I hear from one of you.

Feeling-better-july-2014Monday, July 21 9:15 am John is much more himself this morning. Talking and even joking with the doctors and nurses. His cramps have slowed way down. They’re doing a shallow endoscopy today and will do a biopsy if they need to. They just want to take a look and make sure everything is okay. We’re still looking at probably Wednesday as a discharge day. He needs to be eating solids and have some of his energy back before we leave. I’m just relieved to have him getting back to himself a bit.

I’ve definitely missed my best friend this past week! Luckily they have great internet here at the hospital and I have my laptop so I’ll be working today as I can and focusing on taking care of him as he moves toward recovery. Thanks for having our back through this and your continued positive thoughts and prayers. They are felt and appreciated.

Tuesday, July 22nd, 10:00 am Things are definitely looking up this morning. Johnny is back to normal, chatting, joking, even feeling like working on his computer a little this morning. His docs have cleared him for discharge later today as long and nothing changes for the worse. IV is disconnected and he’s on oral steroids as of today. He just walked out of the room with the physical therapist to show her he’s strong enough to go home and as they left I heard him say, “Want to hear some farm stories?” We have an appointment with his oncologist Dr. Thompson at Seattle Cancer Care Alliance tomorrow (his routine clinical trial checkup), and then we get to head home.

I am ready to get the heck out of here, sleep in my own bed, hug my kids and my dog, and cook dinner tomorrow night. Fingers crossed!

Tuesday, July 22nd, 4:00 pm Buh-bye University of Washington Medical Center. We’re outta here! Off to SCCA House for the night and home tomorrow after the doctor’s appointment. Can’t wait for that “Welcome to Walla Walla” sign.

The Side Effects of Hope

IMG_1822My husband John’s mom always says that he wouldn’t say shit if he had a mouthful. It’s honestly one of the things I love most about him. He’s an optimist at heart and rarely ever complains. Even through his diagnosis and the twists and turns our lives have taken since we got it, he’s remained his grounded, happy, non-complaining self. That’s how I know that the toll the side effects from this clinical trial are taking on him is really big. Because it’s affected him so deeply.

They didn’t tell us when he started the trial three weeks ago about the crippling fatigue, which hit him, right on schedule based on what I’ve heard from others in cancer treatment, on day three after his last infusion. We also weren’t expecting the drenching night sweats or severe sores on his tongue which made it virtually impossible for him to eat for several days. We had hoped that at least the fatigue would subside after a week or so, but it hasn’t. He’s pretty much tired all of the time and has pushed himself to work through it (because we don’t have the luxury of him being able to take a leave of absence from his job – when you’re self employed, that’s not usually an option). On the 4th of July, every time he sat down, from our local concert in the park celebration to the fireworks display, he pretty much instantly fell asleep.

They did tell us that the biggest issue with the drugs in this trial was possible Colitis and severe intestinal issues. We thought we’d dodged a bullet or possibly that the cannabis oil he’s been using had helped with that because he hadn’t experienced any intestinal issues, but out of the blue last weekend, it hit him really hard. This isn’t just run-of-the-mill diarrhea, but gut wrenching cramps that literally brought him down yesterday, when I came home from errands in the middle of the day to find him asleep on our bed.

That was a wakeup call for me. This is a man who normally goes 90 miles an hour from the moment his feet hit the floor early in the morning to the moment he drops into bed late at night. I’m the same way. It’s one of the reasons we’re so well suited. So for him to be napping in the middle of a busy day when I know he’s got 100 other things he’s worried about getting done, it’s got to be pretty bad.

And today is infusion number two. I’m praying that the current symptoms don’t get any worse and that he doesn’t develop any new ones (since the list is pretty long and nasty). This trial is his best hope for any sort of remission. His doctor told him last week that the results they’ve seen so far are very promising and that they’re actually noticing a 30 – 60% remission rate. For metastatic melanoma, that’s almost like a miracle. We’d obviously rather have him living with what could be the long term (even permanent) side effects from such a promising trial than the alternative, but damn. It’s still not easy to watch him go through this.

Your continued prayers and positive thoughts and energy are appreciated beyond belief. Our community is our strength and if you’re reading this, you’re a part of it. We are humbled and grateful for the size of that community. Thanks for sharing our journey.

The Uninvited Guest

Uninvited-guestCancer comes into your life like an uninvited guest.

It takes up residence, stealing the Master Suite for it’s own, whether you like it or not.

An extremely needy and impolite guest, it invades your space, your thoughts, your time, and your daily existence.

It decides how your day goes, how your week goes, how your month goes.

It demands that you change your plans at the drop of a hat and decides whether or not you work that day.

It doesn’t care if your kids are sick, your parents need your support, or your boss or client is expecting you to finish a job by a deadline.

It’s selfish. It doesn’t care. And you can’t circle a date on the calendar, looking forward to it’s departure. It may never leave.

Worst of all, it removes your core stability, making the ground beneath your feet that was once solid and firm movable and mushy.

“Just try to get your footing,” it taunts.

Feeling a little too comfortable with your life? Settling into a new “normal?” No worries. Cancer takes care of that for you.

You better learn to dance through the chaos, because there’s gonna be chaos. In the blink of an eye, things will change again, you’ll have to adapt to a new set of challenges, your life will turn.

Surviving an uninvited guest requires a sense of humor. And diligence, as you pay attention to the rare times when the guest is out or sleeping and you can reclaim your space for a little while.

This new, constant presence that may never go away requires every coping tool you’ve ever learned.

And some days, just making it through the day as you navigate around this uninvited guest is the best you can hope for.

 

Cancer is Boring…And Brutal

IMG_1733When you have Cancer, there’s a lot of waiting. Get a scan. Wait for the results. Show up on time for your doctor’s appointments. Wait for your doctors. Head to the lab. Wait for the lab tech. On Wednesday, as we were sitting in our third waiting room of the day waiting for the CT scan, I looked at John and said, “You know, cancer is boring.” That’s not the only adjective I’d use to describe it, but it was one of the most accurate this week. Boring and brutal.

There’s been a lot happening all at once with John’s cancer. Now that the dust has settled a bit, let me fill you in. We’ve been on a bit of a roller coaster and I don’t see this ride ending anytime soon.

Here’s the Reader’s Digest version:

He had a PET scan two weeks ago and on Monday our local oncologist said, while the results still indicate spread and growth and Stage IV, it looked much better than he was expecting based on the CT scan from last month, so that was a glimmer of hope. In the meantime, we got a call from Seattle Cancer Care Alliance telling us that a spot in the clinical trial we’ve been trying to get into had opened up and John is a perfect fit. We headed to Seattle Tuesday night and spent the better part of the day Wednesday on intake for that, signing forms and getting an EKG, blood drawn, and a new CT scan (boring!).

We also met with John’s oncologist at SCCA as part of the intake. The lump in his groin has grown significantly and a little more rapidly than we’d hoped it would. He also identified a spot that we saw on the PET scan in his left collarbone area as a new affected lymph node. In short, it’s in his blood and moving (which is what metastatic means, so I don’t know why those words seemed so hard to hear. It’s not like they were a surprise. It just felt brutal). He’s hopeful that the trial, which is a combination of PD1 (and you can watch a quick, super informative video here that tells you what the heck PD1 receptors are and how immunotherapy can help) and Ipilimumab (which I not only know how to spell, but can also pronounce now, even though I didn’t even know what it was a month ago) will slow or even shrink the affected areas and keep the melanoma from spreading any more. The affects are working short term for patients in trials so far, but there is no evidence regarding how long they last.

There are no short term bad effects from the drugs (no hair loss, nausea, etc.), but the long term effects can be very serious. Colitis, pancreatitis, lung infections, neuropathy, and liver problems. None of these sound fun so we’ve decided we’ll pass on them and just get the good effects from the drug. He’ll be in the trial through the beginning of October, heading to Seattle every week for the first 6 weeks for monitoring between infusions, and then every 3 weeks after that.

It’s about 600 miles round trip to SCCA from our home in Walla Walla. Good thing those Reinkens boys like to drive!

His doctor did not tell us this trial would cure him. Nothing can do that at present. We’re hopeful that if we continue doing everything humanly possible to slow down the spread and growth, he’ll still be around when they do make a significant medical discovery that could cure him.

John also tested positive for the BRAF mutation (similar to the BRAC in women with a history of breast cancer), which means the part of the cell that’s supposed to tell it to stop multiplying is being overridden by this mutation. The doctor said that’s probably why the lump is growing so fast. There are drugs he can give John that can slow down the mutation and re-activate the “stop multiplying” message once the clinical trial is over if we don’t get the result we want, but it’s a short term fix. After about 9 months of those drugs, John’s body will get wise to the ruse, override the drugs, and the mutation will kick back in.

So basically our life just became about living with cancer indefinitely, hoping something we’re doing, from the herbs to the essential oils, the cannabis oil to the daily juicing and dietary changes, will create a miracle.

As for me…I’m struggling a lot more than I thought I would. I’ve honestly never been through anything like this and I don’t know how to “be” this person who seems to have lost her drive and ambition and succumbs to uncontrollable waves of sadness multiple times throughout the day. Actually, it’s not just sadness. It’s fear at the deepest level and on so many levels, and frustration that my default positive attitude seems to have gone on an extended vacation with no expected return date. The things I’ve always done (and teach others to do) to lift my mood and change the present “space” I’m in just aren’t working. I’m seeking out a support group for caregivers at our local cancer center and have an appointment to start chatting with a counselor next week. I’m hoping that will help and that, as we move through this, I can begin to savor more moments in my day than I dread. It’s definitely brutal but I have the best support system in the world and I’m learning to lean on them a lot, so that’s certainly a positive that’s come from this situation.

We should be starting the trial next week so I’ll update you on that adventure as it unfolds.

The Cure for “Atlas Syndrome”? Gratitude.

Screen Shot 2014-06-04 at 2.42.48 PMI have a pretty blessed life. At least I felt like I did until a few weeks ago. First we got John’s diagnosis and all of the changes, decisions, and worry that cancer has brought back into our lives. On that same day, a close family friend was, at 34 years old, diagnosed with a very aggressive form of breast cancer. Then my dad was hospitalized, the inevitability of putting him into an assisted living home became urgent, and supporting my mom through that took priority as well.

The following weekend, three kids from our high school where killed in a car accident and my youngest Eli (a sophomore there) was struggling to deal with that. Then Sam (my oldest and just home from college) got sick with what we thought was strep throat and just found out is Mono. In the midst of this, my personal business and my role in my partnership business all must go on. This week that meant attending the Direct Selling Association’s National Convention in Orlando, Florida. Needless to say, the timing wasn’t great for me to leave home for an entire week.

So last Friday, as I drove up the Columbia River Gorge to Portland to catch my flight after a crazy, stressful day of getting everyone situated while I was gone, I was feeling like I had the weight of the world on my shoulders and with every mile that passed, it got heavier and my anxiety level seemed to grow. I knew I had to make a shift in my thinking or it was going to be a long, painful week. So I started focusing on everything for which I’m grateful. I took out my phone and recorded a stream of consciousness voice memo, continually repeating the words “I’m grateful for…” and waiting to receive the answer. It was tearful at times, but went on for an amazing 8 minutes or so. And when I was done, I had a beautiful, impressive list and the pity party was pretty much over.

Here’s what I came up with:

I’m grateful for my amazing husband who is always supportive & positive and makes me feel like there is nothing really wrong and like he will and truly can fix everything.

I’m grateful for my two happy, funny, inspiring boys Sam & Eli, for hugs when I need them and knowing when to give me space when that’s more appropriate, and for understanding when I’m in a bad mood that it has nothing to do with them.

I’m grateful for my step daughter Chelsey who is one of the strongest young women I know, for reaching out and asking me never to sugar-coat anything or protect her, to keep her in the loop, and reminding me that she’s a grown woman who can take care of herself and wants to take care of us.

I’m grateful for a family who gathers around me and offers love and support. For my sister, with whom I haven’t always had the greatest relationship but who always seems to be there for me when the chips are down and who has, once again, proven that history doesn’t matter and family is everything.

I’m grateful for my mom, one of the strongest women I know, who, even at 81, carries what often seems like a huge burden with grace and love, for all that she’s always been to me and the constant love that she gives to me.

I’m grateful for a growing network of friends, both old and new, local and far-flung, who are there for me, reaching out for me, supporting me,  & lifting me up at the times when I feel like I need it the most. I’m especially grateful to the beautiful women who stepped up without hesitation and fed John healthy meals this week while I had to be away.

I’m grateful for my business partner (who is so much more than that) Nancy for being my friend through the best and worst times in my life and who, as she herself told me a few weeks ago, always has my back. I cannot imagine running my business through this without her help and strength.

And for my beautiful, amazing friend, yoga teacher, and spiritual advisor Mattie, for all of the insight she’s offered me about my body, my soul, and my spirit. I am a person who is much more capable of dealing with all that I have on my plate today because of the work we’ve done together and I’m grateful every day for her calm, loving, insightful support of me.

I’m grateful for exercise & my new trainer Alyssa because she’s kicking my butt, making me sweat, & helping me feel strong even on days when I’m weak.

I’m grateful for time, even when it feels like I don’t have enough, and for the heightened realization of the priceless value of every single day, hour, moment, and experience.

I’m grateful for music because it allows me to escape my problems, express myself, and feel the sheer joy of lifting my voice in song, both alone and with others. I’m beyond grateful for the amazing family of other beautiful women with whom I sing in the Pride of Portland Chorus, and to our sweet, talented, truly incredible director Ryan, whom I’m also blessed to call my friend. They have wrapped their collective arms around me, given me a place where I completely feel I belong, and made me feel supported and loved.

I’m grateful for Facebook because it’s connected me to literally thousands of people, most of whom I’ve never met, but with whom I feel a sense of community. These inspiring “friends” have embraced me with virtual arms and let me know that they are there for me, praying for me, and holding my husband, my family, and me up in prayer. We feel the positive energy and rest in the knowledge that literally thousands of people are praying for us and for John’s healing every day.

At the end of the day, as the incredibly resilient Lena Horne once said, “It’s not the load that breaks you down, it’s the way you carry it.” Being the one who loves someone with cancer may be harder than having it yourself. I can’t say for sure because I’ve never been diagnosed, but I’ve loved three very important people in my life through it and it sucks. It’s scary and hard and all-encompassing. If I’m totally honest, most days what I really want to do the minute I wake up to the reality that the beautiful, perfect-for-me man lying next to me in bed has terminal cancer, is pull the sheets up over my head and go back to sleep so it all goes away.

The reality of my life is that lots of people rely on me and I can’t afford to give in (or give up).

So every day I’m choosing to carry what feels like a very heavy load with gratitude and grace and as much strength as I can draw from all of the incredible blessings in my life. It’s a daily choice, and one I’m making today.

Things may change tomorrow, but for today, I choose gratitude.

 

 

The Elephant In The Living Room

10344402_10152045908662657_8245746782060224256_oA lot has happened in the week since we got the news about John’s cancer being back and spreading. Of course, it’s been a roller coaster of emotions for us and we’ve been inundated with offers of support, prayers, love, and ways to treat and/or cure his cancer.

To be honest, it’s been a little overwhelming. I have so many links to click on and so much research to do and I feel like I want to get it all figured out right now. Mostly because of the elephant in the living room.

On Monday, as we discussed all of the treatment options and how the holistic approach fits in with the medical/clinical trial approach, John said, “You know, there’s an elephant in the living room here. I really need to know what my prognosis is.”

Never ask the question, “How long do I have, doc?” unless you’re prepared for the answer. On Tuesday, John got a call from his oncologist at Seattle Cancer Care Alliance, telling him there’s not a current spot in the clinical trial for him. John asked him about his specific case and what he was probably looking at as far as long term survival.

The answer was blunt and scary.

12 months.

Now, let me just say right off the bat that we have no intention of accepting that. I told him on Tuesday evening, after he called the boys and me into the living room to tell us what he’d learned, that I didn’t sign up for just 1 more year when I married him 3 1/2 years ago. I won’t settle for less than 30 more years, so if he comes to me at 80 and says he has 12 months, so be it. Otherwise, that’s not gonna fly with me. He totally agreed, so we’re definitely on the same page there. We plan to prove the medical doctors wrong, since they’re basically telling us that, even with traditional treatment, this is a terminal diagnosis and not a curable cancer.

That leads us to the decisions we’ve been looking at this week. First of all, we’re agreed that we’re willing to put anything “natural” into his body that won’t hurt him if we feel that it could help him. Right now that includes essential oils, juice from the most fresh, organic greens we can find (in the slick new juicer I just bought), a healing combination of teas that’s supposed to cure cancer called Jason Winters Tea, and medical grade cannabis oil therapy (there’s actually some pretty compelling proof that cannabis kills cancer cells – you can check it out here). It’s a lot to absorb and we’re trying to change a lot of habits all at once, especially when it comes to nutrition. We’re still looking into other traditional medical options for him as well and will be meeting with his oncologist next week to explore what’s next there.

We’re looking for the joy in every day things and laughing as often as we can. John’s identical twin brother Tony came for the weekend to help him with the plumbing and wiring in the basement, which is phase 2 of our recent remodeling project. Since John feels perfectly healthy, he’s been insistent that we carry on with our plans and that he do the work he’d planned on doing. I’m blessed that I have a network of amazing friends here locally and spread all over the country, as well as a huge support system through my online community (most of whom I’ve never even met in person). The prayers and support are felt by us so deeply and we are truly blessed to have so many who are caring for and worried about us.

The bottom line is this…statistics are just that…numbers on a page. They don’t define our individual experience and this particular number (12 months), has given us even more fuel to become a medical anomaly and prove traditional medicine wrong. Bring it on. We’re ready for the fight of our lives and we know that our love and the love that others have for us will win this war.

This Is A Post I Never Wanted to Write

NCISIt’s been almost five months since I’ve posted here, mostly because there’s been blissfully nothing to report. John has been healthy and sailed through his 3 month checkup in March with flying, cancer-free colors. We’ve been living our lives, remodeling our house, and making plans for a fun, busy summer.

Until the lump started growing.

At first he thought it was scar tissue because it’s in the exact site from which they removed the original lymph node that lead to the malignant Melanoma diagnosis last October. Since he had 33 more nodes surgically removed from that same area in December, it seemed plausible that it certainly could be scar tissue.

Except it wasn’t.

After a visit to his regular doctor a few weeks ago, he was sent straight to the hospital for a CT scan that day, and they called that night and told him they were referring him back to his Melanoma oncologist at Seattle Cancer Care Alliance. We had to wait a week for that appointment. They did a needle biopsy and said they were alarmed at the rate of growth of the lump. After nearly another week, we got the call we’d been dreading.

The biopsy came back positive for Melanoma, indicating that the cancer is back and spreading. There are several other spots on the CT scan he had last week in his abdominal and renal area that they now assume are cancer. They have changed his diagnosis from stage III to stage IV Melanoma. This is a very serious diagnosis and according to his doctor, not curable with traditional medicine. There is a clinical trial they’re trying to get him into and a drug called Ipilimumab (which was still experimental and in trial back in October when he was diagnosed) is now FDA approved and available to him. Even with these drugs, his chances of survival only increase about 20%.

We are looking into alternative forms of treatment as well. The learning curve is steep and we’ll be navigating a lot over the next several weeks and months. John is the most positive person I know and looking at this as a challenge to be overcome, not a death sentence. He is my rock and I’m doing my best to stay positive and not to let the fear take over. It’s an hourly, sometimes minute-by-minute struggle and I’m using all of the tools and skill that I teach others, but I’m managing.

As we reluctantly climb back onto this roller coaster and strap ourselves in, I’ll begin updating this blog again for those who are praying for us and interested in John’s progress. We want to thank you in advance for your positive thoughts and prayers. We do believe that they have power and we don’t take a single one for granted. As I’ve said in the past, above all, we’d like to encourage you to appreciate all that you have, hug those whom you love often, and never, ever forget how precious and fragile life is.

Yours can change in a heartbeat. Our certainly did.