Go easy, kid.

All too often I find myself trying to figure out what this whole cancer journey is supposed to mean. What it means to Jeff, his family, the kids, our friends, to me… It’s like sitting through a bad philosophy class in college where you’re desperately trying to follow along and understand, to make sense of it and then eventually some of the students just give up. Today I gave up. The past two weeks were excruciatingly long. At the end of it all, we are grateful and relieved, and we feel beyond blessed. This weekend we celebrated with family and friends who we hadn’t seen for far too long. Today I woke up like I do everyday to the sound of Fin crying (the little man, well, big man wakes up ready to eat!). Jeff got up with him and I slept in for the first time in months…maybe a year even. It felt great. As the day went on and Fin went down for naps, I laid back down too. I had no problem falling asleep. I realized I was tired like I used to be when I went home on spring break. It reminded me of those first couple of days in your own bed feeling so happy and secure, easily sleeping past the noon hour… Except today was a little different, I felt an incredible amount of guilt for sleeping as much as I did. It was a mix of feeling the tug of chores going undone, being absent from the boys’ stay, and realizing I was void of the energy I thought I should have after Jeff’s good news.

Even writing this post, I feel like I should be full of hope and happiness. It’s not that I’m not. In fact Jeff and I watched a great piece on 60 Minutes tonight about miraculous strides being made in the treatment of cancers using Polio. We were nearly brought to tears sitting there, being reminded of the reality of his disease, but even more so realizing the possibilities that lie ahead in treating it. Maybe curing it. All really positive things these last couple of weeks. All things I’m internally jumping for joy over. And yet, I know when I close my laptop I will be asleep in minutes.

I guess we’re all allowed a day here and there to give up, to give in. Maybe this will all make perfect sense tomorrow.  🙂

Much love and much hope! xo.

Scan week.

On Friday morning Jeff called me to say that his online medical chart updated and unfortunately his liver enzymes were still high. We were both anticipating all would be well and Friday would be the day he’d go  back on his treatment, but no such luck. I went into a bit of a panic mode and immediately called Strong. It took several calls to the cancer center before our team nurse finally called back (she made sure to tell me that they received ALL of my messages….sorry, Joyce, ever heard of “medicine of the highest order”?? this is not it!!). As we already knew, Jeff’s oncologist was not about to let Jeff get back on his treatment with the liver still healing. So, the plan is for him to have a full body PET scan this Wednesday. He hasn’t had one since his initial diagnosis (aka “Dx” if you’re Tweeting with  your cancer peeps) in November 2013. So…..we’re a little nervous about what the scan might reveal, but are also hopeful it could look ok. Jeff has been feeling mostly good, so hopefully that counts for something. We will get the PET scan results Friday morning. The next morning, Saturday, Jeff will go for a brain MRI. That will give a better image than the PET so we can see how things are looking in the ole’ noggin.

No matter how you slice it (scan humor anyone?), scan week is really stressful. Frankly, it sucks. If you think of it and could send a couple of extra prayers up to the big guy, we would really really appreciate it.

Much love and much hope! xo.

For every storm, a rainbow.

March is here and that means two things…the snow will start melting soon and St. Patrick’s Day is coming! Both events are very exciting around here. It’s been a very long winter in WNY and in the Clark house. Like I’m sure for many of us, it’s been one cold after another (after an ear infection, followed by a double ear infection, after stomach virus…). Fingers crossed we’re on the tail end of all that now. In spite of all that and the harsh winter, we’ve faired pretty well! The three boys are all doing well at school and daycare respectively. Work is busy for Jeff and I, but good things are happening and it’s keeping our minds busy and off of other distractions (more on that in a second).   Fin started taking swimming lessons and is a little over a month away from his first birthday! It’s hard to believe. And to kick the month off, a bunch of our favorite people came to a Charity by  Design event at our local Alex + Ani to raise money for the Bonnie Addario Lung Cancer Foundation. I’m still waiting to hear what the total was that we raised and will share soon. It was a lovely turnout, and a reminder that Jeff and I are tremendously fortunate for all of the love and support we continue to have.

So a quick update on Jeff, it’s long overdue. Since the last post in January, Jeff went back on Zykadia (aka Ceritinib) at a lower dose. The first couple of weeks he felt great and his blood work and EKGs were looking pretty good. By about the third week his liver enzymes spiked and he had to come off the treatment again. We have since been waiting for the enzymes to normalize so that he can go back on the lowest dose that is allowable with the drug. So he’s been off the treatment for about three and a half weeks now. Of course there are many things we worry about with him not being on Zykadia this length of time. I was able to consult with two oncologists (one of them thanks to help from the Bonnie Addario Foundation – thanks, Danielle!) who don’t seem overly concerned with him being on a break. So, that offers some peace of mind. We’re praying hard that his enzymes will be normal sometime this week so we can get back on track.

Maybe a little Irish luck will come our way this month…and your way too! Much love and much hope! xo!

May God give you…

For every storm, a rainbow,

For every tear, a smile,

For every care, a promise,

And a blessing in each trial.

For every problem life sends,

A faithful friend to share,

For every sigh, a sweet song,

And an answer for each prayer.

Tell me how you really feel.

Jeff and I have not taken a vacation, like a real week-long vacation since early in 2013. My best friend decided it was time for me to get the hell out of Dodge and planned a four-day, three night getaway for just me and her. I looked forward to it for weeks. We went, we conquered (aka we shopped, drank and danced), we relaxed, we had a blast. Before we had left for our little vacay I was feeling myself reaching my limit amidst what feels like limitless responsibilities. I was maxed out and it was starting to show. Our girls’ trip was my chance to have some fun, go to the spa and return renewed and ready to resume my life’s duties refreshed and better than (n)ever!

While away, Jeff’s treatment side effects took on a life of their own. When we talked on the phone I got the feeling he was downplaying how he was feeling so as not to worry me. Fortunately his family was helping out all week so I knew if anything was really serious someone would be there to help. (Thanks, guys!)

After a long day of flying we arrived back in Rochester, greeted by freezing winds and snow. Great to be back?! Regardless, I was excited to get home to the Clark boys and was quietly hoping Finley wouldn’t sleep through the night so I could pick him up and give him a million kisses. When I walked upstairs someone was up, but it wasn’t Fin. I arrived home to find Jeff sitting up in bed in a great deal of pain and his heart beating erratically. I immediately suggested that we call the on-call oncologist. When he didn’t refuse this idea I knew he was feeling awful. And frankly, I was scared. The on-call doctor spent about 20 minutes on the phone with Jeff, by now it was about 1:30am. Based on his symptoms she was not concerned about a heart attack and advised he take ibuprofen for the pain and try to get some rest.

The next morning came quick even though neither one of us really slept. Jeff went to his already-scheduled oncology appointment to review his blood work and get yet another EKG (man, if we had a nickel…). An emergency CT scan was conducted to rule out a blood clot as cause for all of his chest pain. No clot and *bonus* no new cancer showed up on the scan! The blood work was a bit shaky, however. Liver counts were up and the decision was made to take Jeff off his treatment. The hope is that his side effects will subside and the liver will regulate (Warren G style…what?) itself over the next one to two weeks. If that happens, he’ll go back on the treatment at a reduced dosage. Fingers crossed, friends.

I’m not exactly sure why I felt the need to recount this whole ordeal other than to get it off my chest and to share a day-in-the-life scenario of lung cancer patients and their caregivers. We are incredibly fortunate that there are even drugs available to combat this disease, but sometimes behind our smiles and positive outlook, there are some shitty days, sometimes weeks. Please share this post and spread the word that lung cancer needs more attention and more funding. And oh yeah, fuck cancer.

[Shout out to our dear friend Abbey who crafted this Fuck Cancer cross-stitch piece for us. It hangs proudly in Jeff’s man cave. Sick of reading about cancer? Me too. Check out Abbey’s blog Aesthetic Outburst for some good ole’ fashioned fun and fabulous art + crafts.]

Have no fear, the new year is here :)

It’s been quite a while since I’ve sat down to write or even just to provide a quick update. Partly because of the holiday hustle and bustle. Partly because all three of us have been all sorts of sick the last couple of weeks. And mostly because I just haven’t wanted to. This was our second holiday season since Jeff’s diagnosis. There were many reminders of last year, many moments of reliving the diagnosis over again. Switching to his new treatment just a month ago also packed a punch. The unknowns with starting a cancer treatment bubbled up again… That said, we did have a lot of fun with the kids and made new memories with our families. Fin’s first Christmas was a blast…he was swimming in gifts and like all babies really could have made due with a shiny bow and some paper to chew on. 🙂

Our favorite Irishman is holding his own! His new targeted drug is much more intense than the last, but they don’t call ’em the fighting Irish for nothing. We are gradually figuring out how to manage this one and the side effects are becoming more predictable and slightly more tolerable. There’s been some back and forth with some of his blood tests and dosage. Last week we thought they were going to increase his dose, that’s on hold as we continue to watch his liver function. GREAT news is that his most recent brain MRI shows that those nasty brain mets they zapped in October are all shrinking AND there are no new ones. The key being that there aren’t any new mets. That’s hopefully a good indication that this new treatment is working its magic!

NYE 2014 was quiet here in the Clark house. Jeff is still recovering from a nasty virus, I’m on the tail end of a cold as well. So we stayed in, had half a beer and called it a night around 9:30pm. How times have changed! We actually really enjoyed our night and would gladly take many more NYEs like it (minus the cold/virus thing and maybe with a full beer next time…)

Jeff and I send everyone wishes for a very happy and super healthy 2015! Much love and much hope! xoxo.

Last year was like getting a subscription to the Jelly of the Month club…

It’s hard to believe the holidays are upon us. What have been, in previous years, really special times that I’ve looked forward to are now slightly (ok, like really) tainted with the memories of last year  –  our first holidays with cancer. Merry Cancer everyone!

Now, I will say the second time around already feels a little easier, more manageable emotionally. I’m excited to decorate the house and to get things feeling cozy for the kids and for Jeff. I feel like I can handle the stresses that come with the holiday season because this year I’m not going to let it take over. If there’s one thing cancer has taught me is to not sweat the small stuff. And hitting the mall and buying gifts is small stuff. Baking and cooking and running around like a crazy woman trying to get “it all” done is small stuff. I plan on doing what I can, when I can and that’s it (my apologies to the half of you who do not get a card from us this year).

Tomorrow is the first appointment of two in our holiday series of cancer check-ups. We meet with our oncologist to review scans of Jeff’s lung and liver. He feels good, so we just hope that the scans reveal to us that the treatment he’s on is still working. While I know we could handle a treatment shift (we know someday it will happen), it’s not at the top of our Christmas list if you know what I mean. In December Jeff is scheduled for a brain MRI to confirm that the SRS treatment took care of those nasty brain mets and to see if any new ones have popped up.

Santa, if you’re listening, we’d really like good news from the doctor this holiday season. And if there’s room we’ll take a remote car starter too. 🙂

xoxo!

High score.

Jeff did it. He set the record for the most brain mets radiated and longest time on the table at Strong in one session. Turns out there were 7 mets in total (one could have been a blood vessel, but they weren’t certain so it was zapped to be safe). The doctor treated three, they took a break and then did the other four. Fin and I arrived at Strong just after Jeff went back to the treatment room. We found a seat in the waiting area. Before I knew it, the cancer center had completely cleared out. The hospital is kind of a cold and lonely place. Remove all of the living, breathing beings and it gets downright creepy. Luckily Fin’s been working on his bi’s and tri’s so we were covered if someone came at us from behind the shadows. Two and a half hours later, Jeff was done and our little family was happily reunited. I’m so proud of my husband. Tonight’s therapy was scary and intense, it required him to dig deep. As always, he came out with a smile. And tonight with the high score.

We may be low on funding, but we’re big on community.

For those out there who don’t know, when it comes to cancer research dollars Lung Cancer is grossly underfunded. I wont go into all the stats or post a bar chart (see Google for those) on how it compares to other cancers. Long story short, the funding to patient ratio for LC is hardly worth mentioning. That said, our community of patients, caregivers and advocates is second to none. After all of our appointments on Thursday we had a plan in place for Jeff that we felt pretty comfortable with. I did put a call into our doctor at Dana-Farber Thursday afternoon to run it by him. Friday morning he called me back. I explained to him what the latest scans show and what our plan of attack is. To my surprise he does not agree with the course of action. He said, “it’s unconventional.” What the?  Now, Jeff and I love our oncologist at D-F. However, I was shocked to hear him even mutter the word “unconventional.” He said standard of care would either be WBR (whole brain radiation) or to switch treatments entirely. By the time I hung up the phone I didn’t know what to do. We had two very different opinions and to my surprise, our local doctors were taking the less conventional approach. I was so bewildered I thought about calling Aidan and Noah to ask them if 10/17 was opposite day or something!

With just a few business days until Jeff’s first scheduled treatment I suddenly felt a lot of pressure to get another opinion on the matter. By that time, I had received several messages via the blog, Facebook and email about what other patients and caregivers’ loved ones had done in similar situations. All really good information, and more ammunition to help us make a decision now and to help guide us in the future. At this point I knew I needed to speak with one more trusted professional to discuss the scans and vet out the options. Who could get me in touch with someone quickly? Arash of course! Before I knew it, I was on a conference call with him and Danielle Hicks from the Bonnie J Addario Lung Cancer Foundation. Danielle knew just who to talk to, Dr. Camidge, an ALK expert out of Denver. Dr. Camidge however, was at an event in Australia, but it was worth a shot. Danielle reached out to him and by Saturday morning my phone was ringing. My Caller ID flashed a California number. Yes! I knew it was her. Danielle apologized for calling me on a Saturday. (Danielle, if you’re reading this, you can call me anytime!) She let me know that Dr. Camidge supported our decision to use SRS. I hung up the phone and was finally able to relax.

In about a 24 hour timeframe friends and acquaintances from around the world (literally) came together to provide Jeff and I support in the form of medical opinions, advocacy, personal experiences, and plain old love. With a community like this I have a feeling those bar graphs that I didn’t share with you are going to change dramatically in the very near future.

Bad news, you have brain mets. Have a great day!

I don’t know about you, but I’m ready to get off this ride that is lung cancer. Today was a mess. It started out with our oncology appointment. Fin joined us. Thank God we brought him because he truly was a bright spot. He brought a lot of joy to other patients and the staff at the cancer center. Our doctor doted over him for a few minutes after entering the exam room and then abruptly changed the mood when she said, “So I have bad news.” Shit. Shit. Shit. Seriously? What could it be? Our hearts sank. Fin got quiet. I’ll spare you all the details and medical jargon. Bottom line Jeff had one brain met (metastasis) at the end of July that was only 2 mm and he now has 6 mets ranging in size, but none larger than 0.8 cm. So what now? All of the research I’ve been conducting in preparation for this very moment was swirling around in my head. Our oncologist said she already met with the radiologist and they were leaning towards whole brain radiation. HOLD. THE. PHONE. This kind of treatment is usually reserved as a last resort. It comes with a laundry list of side effects. We asked about targeted radiation (aka SSR or Gamma Knife) and that was an option if we wanted to push for it. The good news that did come out of the appointment was that it appears Jeff is still responding to his current treatment everywhere else. Most everything else in his body is either stable or still shrinking. There are two little spots that look a tiny bit larger, but could just be skewed due to the scan image. We’ll go back before Thanksgiving for another round of CT scans to confirm.

By the end of the appointment we had laughed, we had cried, we had cried again. We were exhausted. But wait, there’s more! We took the elevator down to the ground floor to meet with the radiologist and this semester’s resident. The resident was so sweet and taken with Finley. The radiologist who I’m sure is talented and is also very nice had a very dry personality (think day-old toast with no butter). He started by saying how sorry he was to meet with us under these circumstances and then went on to describe the risks of SSR, the benefits and so on. Fin fell asleep in my arms as Jeff signed his consent form for treatment which will be scheduled for next week.

And finally, we drove over to another medical building to meet with the neurosurgeon who works with the radiologist. His bedside manner was more our speed. He described the procedure as “spot welding” (a term we’ve heard before) and said that he’s treated many patients with lung and breast cancer very successfully. He said if more mets crop up, we just zap ’em again. Just when I thought we’d end the day on a high note (I’m using this term in the loosest possible sense), the surgeon said that he’d like to send his nurse in to speak with us. Apparently the nurse’s sister had lung cancer and worked with Dana-Farber just like we have been. Side note, the sister just died last fall. Um? So the doctor leaves, the nurse comes in. She sits down next to us. She struck me immediately as a very caring and sweet woman. And she was. But boy, we were not on the same page. When she started to speak about her sister she immediately started to cry. My heart went out to her. When she composed herself she told us how her sister was ALK positive (like Jeff) and how she was always so sure that she’d beat her lung cancer (ding ding ding) and she continued to work all through her treatment (check) and that her disease progressed rapidly at the end and she died quickly (fuck).

I told a few people at work about our experience today. Almost all of them asked me how we were at work…WHY we were at work and how we were even functioning with everything we have going on. I’m not sure I can answer that other than to say that the show must go on. Jeff and I realize that getting today’s news while extremely difficult and tough to process is the reality of our situation. Those brain mets were there on Monday and we didn’t know about them. Today we know. And now we can do something about it.

Old pros.

Life has been particularly hectic these past couple of weeks. Jeff started his grad class and was away several nights on a business trip. I’ve been busy at work with the new gig and with Jeff away have been flying solo more than usual with the little dude. Needless to say it’s been more stressful than usual and our threshold for dealing with the looming scans is being tested. I will say, I think we are both fairing pretty well. As Jeff said to my Mom on the phone last night, “We’re becoming old pros at this.” While I’d much rather be a pro at something like shopping or spa-ing (you with me, ladies?), it’s true that this process somehow feels more doable each time it comes around.

Remind me of this Thursday morning before our appointment, would you?

Much love and much hope! xo.