Surgery is a go. Dr. Javle signed off on it and we are back in Austin prepping for surgery this Monday, August 17. The kids and I got home on Thursday the 13th. I drove to Houston for the day on Friday to do all my pre-op prep. I met with my surgeon Dr. Curley and we went over the plan. He expects I will be at St. Luke’s Hospital for 4-5 days and surgery will last 1-3 hours or so depending on how much scar tissue there is once he opens me up. SWEET! He will use the same incision he used before and the surgery itself will be just like it was last time. The main difference this time around is he will only be taking a small part of my liver out instead of the 66% he took out last time. He will check while he’s in there for any other areas of concern and remove them.

Recovery this time will be far easier. Last time I ended up needing 2 blood transfusions after the operation because my blood wasn’t clotting. This time that shouldn’t be an issue since less liver is being removed. I also won’t have that adorable little drain that nearly brought me to my knees last time because it was both disgusting and annoying and attached to me for 3 weeks. I won’t have nearly the fatigue I had last time either since I won’t have to re-grow most of a major organ. Once the little offender is taken out it will be sent to pathology to determine what exactly it is. The results take a few weeks as I recall or maybe less. Dr. Curley says he’d say there’s an 80% chance it’s cancer. You all know how I feel about statistics, I didn’t like them in college and I still don’t like them. I am assuming it’s cancer which is why I am opting for removal via surgery instead of a nice out patient procedure that would burn it out of me. We want the data so we can know what’s going on in there.

I’m not looking forward to the pain after surgery and being in the hospital. Major surgery is no fun. Period. Ever. However, we are talking about one spot hopefully and prior to this there were many spots so I am feeling grateful I can get this procedure done and feeling very supported by my rock star surgeon. He is my kind of guy. As he said to me, he’s been aggressive with my treatment from the beginning and will continue to do so. That’s what I want.

My fabulous mother-in-law is en route to Austin from PA as I type and will be staying with the kids until next Saturday. We are so thankful she offered to be here and we promise Granddaddy we’ll have her back to the Farm in a jiffy. My Mom and sister will be on hand to help and we thank all the friends that have offered to cook a meal or have the kids over while we are in Houston. Charles will come to the hospital with me and will update the blog so stay tuned.

Phin is all the way better. One spinal tap, 2 ER visits and eight days of headaches was not fun. Despite his feeling pretty awful we did get in 2 boat rides on Lake Champlain on Paige and John’s boat and a girl dinner one night in Shelburne with me, Paige, Dana and Jenny. On the day we left we had breakfast at friend Roxanne and Russ’s restaurant, The Spot with Jenny and her kids Sophie and Lily, Paige and her daughter Caroline, Dana’s kids Phoebe, Leo and Lulu and my two kids. It was Leo’s 12th birthday and special to be there with our Godson on his day.

So people, life is going on. I am eager to get this dog and pony show done as it were and get on to more interesting things. It’s been a wonderful summer and it has gone by faster than any other I can remember. I am so happy in the after-glow of spending time in Vermont with the 3 friends I’ve known longest in my life and who have shaped me, loved me and given me some of the best moments in my life. Their husbands and children are all family to me and I know that I am blessed to know such riches. We also got to swing through Acton, MA en route to Logan Airport to see Sam and Erin Nichols and their 3 hooligans. They are family too and although the visit was too short it was worth every moment and all 50 mosquito bites I got sitting on their deck into the evening.

I am eager to catch up with all my Austin friends, many of whom I haven’t seen since June! I will be sending an email to some of you that have offered to send a meal our way or entertain a kid of ours this week. I have loved all the emails, texts and phone calls I have gotten from you near and far as I navigate this next bump. Please know I smile with each message and want to get back to all of you but I’ve been treading water mainly and haven’t been able to catch up yet.

Gran has arrived safely since I started typing. My niece Zoe has gone off to Colgate today for her freshman year so I am thinking of her and her family as they embrace the seismic shift that occurs when a chickadee leaves the nest. GO ZOE! We are so proud of you as you launch into this chapter. Happy 11th Birthday to Niko Muller today too!

I’m much too tired now to think anymore about what else I should be sharing so I’m off to bed. Here are a few photos from Vermont.

Nite Nite,
xoxo Hilary

Paige, John and I thought this was fitting while we were in the throws of Phin’s illness. We sent it to Charles at work.

On Lake Champlain – Charlotte, Leo and Lulu

Paige, Hilary, Dana, Jenny

Charlotte,Leo, Phin, Lulu, Phoebe, Sophie, Caroline and Lily

My Godchildren: Leo, Sophie and Caroline

Hi Everyone,
My apologies for taking so long to update you all on the results of my PET. I got the results Monday and spent that day trying to make plans. First things first. The PET did show uptake in the 1.1 cm area on my liver we were concerned about based on the CT I had last week. The SUV number (amount of metabolic activity measured) was low, but higher than normal. This was enough of a concern that it’s cancer that my surgeon wants to go ahead and surgically remove it. I have yet to get my MDA doc, Dr. Javle to weigh in on this plan but I have gone ahead and booked surgery for August 17th in Houston with Dr. Curley.

The kids and I are currently in Vermont and had planned to stay here through the 12 then head to Nantucket until the 20th. Sadly we won’t make it to Nantucket with the Cullen’s and the Flatow’s. I am sad because I was really looking forward to being with good friends and spending a week in one of my favorite places. My soul could really use that salt air and that beautiful wind blown landscape. However, I am taking in all the gorgeous green grass and blue mountains of Vermont and loving being here with Dana, Paige and Jenny and their families. It’s a pretty magical place and the kids and I are lucky to be here with friends that are really family. So I am not complaining.

We’ve had a few bumps this week. After the news on Monday that the the PET was not clean, Monday night at 2:30 am Phin came into my room sobbing that he had the worst headache of his life. I drove him to the ER In Burlington at 3:00 am and he spent the next 5 hours sobbing from head pain. He had a CAT scan that was clear and then they did a spinal tap and finally diagnosed him with viral Menangitis – specifically Cocksakie. This is a viral infection that settles into the fluid around your brain and spine, which explained the headache. We finally left the hospital at 5:00pm Tuesday night. Wednesday brought severe back pain and today Phin went back to the windsurfing camp he had started on Monday with my Godson Leo and the headache came back. So he is sleeping as I type. He’s not having quite the vacation he was hoping for but he has had a fun summer so all is not lost.

On the bright side, we did have some fun last night at the Addison country fair where we watched demolition derby and rode rides and generally enjoyed a beautiful Vermont evening. I have to mention how wonderful friends Dana, Todd and Paige have been. Lending cars, feeding us meals, taking care of Charlotte and lending support as we’ve sorted out this mess with Phin. Poor Charles gets my news over the phone followed by news that Phin’s in the ER 24 hours later. It hasn’t been a week without drama!

Where am I with all this? I do believe life is tapping me on the shoulder ever so slightly with some sort of message but I haven’t yet deciphered what it all means. I am pissed really that there seems to be more cancer yet I’m not scared. It’s an inconvienence. I don’t want to have surgery again. I don’t want another scar to add to the mounting number of cancer inflicted slashes to my body. I don’t want to be the patient and have to ask people to help me. I’m tired of talking about me and cancer. It’s starting to define me in ways I’m not digging. As I said though, there’s a message in all of this and I’m curious about the meaning. I have been feeling untethered; a bit of a bystander in my life and I’m looking for some good foot holds. Everything is murky right now and I can’t say it feels very satisfying. It’s up to me to find my groove so that’s what I’m trying to do. There’s work to be done for me, that’s obvious!

So that’s the latest and the greatest. My kids know what’s going on. Cancer is becoming routine in some ways although I’m sure their radar is back on high alert with this set back. They are wonderful people Phin and Char and I am so grateful they continue to thrive despite shaky ground.

Enjoy the waning days of summer.

xoxo Hilary

PET scan is scheduled for tomorrow morning at 8:30am.
I’m glad I could get it this week, I don’t know when I will have results, most likely the earlier part of next week.
I am grateful I could get in tomorrow as I leave with the kids for Vermont this Sunday and needed to get this done before we leave.
So, yeah!
xoxo

I’ve had some requests for an update. No scan scheduled yet. Insurance has yet to approve the scan request. They technically have 7 days to do this but hopefully it will happen by tomorrow. My local oncologist’s office has made a few calls to my insurance and I have spoken to them as well to try to speed things along but it’s insurance so…
Oh the joy joy joy of cancer and insurance!
xoxo

Scan results are in and they are a bit of a mixed bag this time. A small 1.1 cm something was seen on the liver right at the site of the resection (surgery). Three possible scenarios: 1- it’s a benign cyst 2- it’s a reaction to the surgical sutures which can appear a year or so post surgery (the time frame I am currently in) 3- it’s a very small cancer growth. It doesn’t look like my other tumors, it’s less dense. This could be because it’s not a tumor or because it’s such a small tumor. What next? A PET scan in Austin hopefully in the next few days. If the PET lights up in that area, we know it’s cancer and Dr. Curley (my surgeon) wants to do the same surgery I did a year ago, only it would be on a smaller scale. If nothing lights up on the PET I will do a scan in 2 months to see if it’s still there. There were no other areas of concern, lungs, lymph nodes pelvis area were all clear. So not the clean scan we were hoping for and more waiting to see what we can piece together but even worst case scenario seems manageable. Not desirable but manageable!
Stay tuned.
xoxo
Hilary

It’s been a long time since I’ve written. Three months since my last post. It’s 5:15 am and Charles and I are on the road to Houston for scans. To use a word my father-in-law favors to describe umbearable situations, it is a wretched process. Always. The people we encounter are kind, Charles is always with me which is deeply appreciated and much needed for both of us yet the weight of it crushing. Will this be the day that everything changes? Are we driving towards doom? What secrets is my body harboring?

Getting scans is like taking that little pesky worry/fear voice and treating it to an amusement park. It gets to run wild from thought to thought at warp speed like a sugar, adrenaline high, spinning and doing loops making your stomach drop. This would be fun if your thoughts were light fun ones but you do not want fear of death ricocheting like an amped up 3 year old all through your mind.
The takeaway here friends is that scans don’t get easier, at least that has not been my experience thus far. As my dear friend Martin, a fellow cancer outlier said to me the other day, scans actually seem to get harder. The more good ones you have, the more you are temping fate. This kind of thinking is not in line with the grace that comes with feeling grateful for where I am today. Scans turn me into the the wiped out 3 year old that doesn’t want to leave the amusement park and pleads with her parents not to make her go. She just can’t do it. It’s too hard.
Well I don’t want to do this, it’s too hard. I don’t want my life hanging in the balance every 3 months. I don’t want to watch my husband wrestle with it either. Last night after telling Charles through my tears that I don’t want to have to do this cancer thing anymore I said to him, you’re not the person that faces your own death, and he answered back, yes but I am the person who would have to live with it. Contrary to what it sounds like, we were not trying to one up each other. We were acknowleding that the stakes are equally high for us.
Scan time is the bitch slap that reminds us that life is precarious. As if we need this reminder…Maybe we do. My sister said early on in those dark days, knowledge is power. My friend, cheerleader and next door neighbor Julie says the same thing to me. I know my body is trying to heal. I have faith in it’s ability to do so fully. Whether or not something shows up today my job remains the same, keep reaching for grace. I love this quote by Jim Carrey, it speaks to me. “Take a chance on faith. Not religion, faith. Not hope, faith. Hope is a beggar. Hope walks through the fire and faith leaps over it.”
I like the idea of leaping!

Thank you for your continued prayers and love. I have been humbled really by the generosity of spirit you and those you keep in your circles have shown me and my family. Kris Soffa, a family friend whom I’ve known since I was 5 and her yoga group have kept me in their prayers when they get together to practice. Charlotte Hardwick has dedicated her yoga teaching classes to me many times and I know my mom has been on her knees in prayer for my well being. My name has been spoken in churches here in Austin, Vermont and Pennsylvania and those are just the ones I know about. My college friend Heather and her husband Jon (remember the boat created out of Christmas lights last Christmas in my honor?) designed their summer trip with their two daughters to launch here in Austin so they could spend some time with me and my family. There are too many ways all of you have continued to rally around us to list here, just know that these acts of love are fueling me every day.

Please keep my friend Susannah’s 12 year old niece Lily and her parents Lecia and Rick and Lily’s brother RJ and the entire Stanley and Jordan families in your prayers. Lily was diagnosed a few weeks ago with bone cancer. She has had her first round of chemo and it was rough but she’s already shown tremendous strength and wit that far exceeds her youth. Susannah and I grew up together in Chestnut Hill and I know our community has already rallied around Lily and her family. The Jordan’s are in those first initial weeks after diagnosis which are so tough. If you would like to follow Lily’s progress, here is where you can find updates. Their family asks that you use this site to keep informed so they are not inundated with other means of communication.

http://lilyjordanlove.wordpress.com/

I have 2 scans today (double the fun!) one is at 9:40 and one at 11:40 and we meet with Dr. Curley at 1:30 for preliminary results. We are doing it all in one day today so the radiology report won’t be in yet. Thank you Lisa Belcher and Mom for helping with the kids!!

I hope you are all enjoying the longer sunny days and remembering the power of love.

xoxo Hilary

I peed my pants, thoroughly but it was worth it because the scans are clean.

Grateful.

Incredibly.

Grateful.

It’s been a while…3 months to be exact. How did 3 months go by so quickly? Usually the 3 months I have between scans seem like a good amount of time, but not this time. I think it’s because I have so much scanxiety. Oh, not familiar with that term? I wish I wasn’t either. It is the gripping fear you have before going in for regularly scheduled scans. The incessant thoughts and physical sensations that loop through your meditated, bath salt soaked, yoga stretched, green juiced mind and body that something will show up that will blow the pants off your life once again.

I will not lie, it is crippling. It is the proverbial “waiting for the other shoe to drop”. Oddly, during chemo I had these same scans every 3 months and although they were terrifying they lacked the intensity I feel now. There’s a simple explanation for that. During treatment I knew I had cancer. When I got scans I never expected for it to be gone because I was told this doesn’t happen with my particular breed of cancer. The best and most I hoped for was shrinkage. So good scan news still included cancer. Now when I scan we are monitoring my body to see if the cancer is going to “come back”. Good scan news no longer involves cancer. Much different. Better, yes, most definitely. Not, I repeat, NOT easier. This doesn’t mean I am not grateful for where I am today. I am; truly, deeply, ugly cry, crawl on the floor and kiss the ground grateful to be alive and doing well. After doing all that climbing to reach this point I am teetering at the top, the feel good rush of having accomplished the goal vanishing like vapors before I even got a chance to relish them. There is so little oxygen here at the top. Everyone is so far away and now I am worried about blazing a trail back down to my new existence. The path I journeyed on to the top was the path of the innocent. The Before. I am not that same girl. Except I kinda am.

I asked someone I respect very much about how to handle this post cancer treatment stage. She’s a stage IV Colon Cancer survivor whom I have mentioned before in other musings. Her name is Tara and she told me based on her now 3 years of living this way and on the other survivors she knows that this doesn’t go away, you just get better at managing it. As I sit here typing at my dining room table with my beautiful 7 year old daughter eating her dinner next to me and meal preparation clanking noises in the kitchen from husband I am trying to appreciate this normalcy, these blessings. My ribcage hurts on both sides, I have pain in my chest and upper back and I fear it is cancer in my lungs. It sucks. Then I chastise myself for thinking negative thoughts and giving my cells the idea that they get to misbehave.

Friends, this is really fucking hard. There is no pretty way of saying it. Tara sent me a great article on this stage which the writer refers to as the Fifth Stage of cancer. It is where I am living now. Here it is if you want to read it. I think there is a real need to focus on this stage of cancer treatment and it certainly makes me feel better that I am not alone in facing these challenges.

http://m.huffpost.com/us/entry/6574712

Switching gears I hope you all had a lovely Mother’s Day weekend. I felt very honored and loved by my people. I just tucked my sweets into bed and went over the plans for the next two days. They know the drill now and it’s less traumatic for them because this is our normal now, us going to Houston overnight every 3 months. It doesn’t sound like a big deal but obviously this trip is loaded and although our children don’t know the extent of the load they sense it’s importance. They want us home, under the same roof, close by. Bless them and all their childhood neediness. It is good to be needed. I am grateful. I am determined to be here under the same roof for a long long time.

Please continue to send prayers my direction. I scan tomorrow at 1:30 at Baylor this time instead of MDA followed by an 8:30 appointment with Dr. Curley, my surgeon on Tuesday morning. Dr. Javle, my MDA doctor suggested I do scans this time at Baylor with Dr. Curley and then see him at MDA for the next 3 month interval in August.

We had a really lovely trip to North Carolina’s Outer Banks 2 weeks ago. Here are a few pictures. Thank you Dana, Todd, Jenny, Jim, Roxanne, Russ, Lindsay, Jeff, Shanley and Gary for another memorable week with you and all your sweet kiddos. Dana and Jenny – being with you is like getting oxygen at the tippy top of that mountain. Thank you for 40 years of friendship, for your awesome husbands and amazing children.

Big hugs to all of you out there that continue to keep us in your prayers and hearts. Thank you.

Time for bed. Nite, Nite.
xoxo Hilary

Phin and my Godson Leo

Dana and daughter Lulu, Charlotte, Hilary and Jim, Hilary and Todd

Phoebe, Charlotte, Sophie, Lulu, Lily and most of our crew on the beach

Driving home from Houston right now. Scans are all clear. Happy day!
xoxo Hilary

This is how we do cards, my husband and I, always.

Initials on the card, placed on the pillow usually in the evening of the special occasion. It’s one of our rituals. I know from my masters program in marriage and family therapy that rituals are important in a marriage. They bond us, remind of us that we’re special to one another and bring us security. I love a hand written card, it is truly a gift. Hand written words on paper never ever fail to nourish my soul. Seeing an envelope on my pillow with my initials (all 3 letters no less, now that I’m married and get to have 3 instead of 2, having grown up with no middle name) from my husband makes me deliriously happy. This is our thing. My husband also happens to write lovely notes to me and these are gifts I treasure.
Whatever you’ve done today, I hope you did something nice for someone else or that you’ve been on the receiving end of someone’s kindness. Most of all, I hope you take any ordinary day, and show someone your love, share your spirit and drink in the small moments because every day is a blessing and we all need to feel loved.
I head to Houston on Wednesday the 18 for scans- it’s been 3 months since the last ones and I will go every 3 months for the foreseeable future. I meet with Dr. Javle on the 19th to get the results. I have major worry. This scan seems pivotal for some reason. I guess since I’ve been off chemo for 6 months, I am nervous to see if my body is able to stand on it’s own in health or not. I would prefer to have someone drug me, do the scan, get the results then have Charles give me the info. Alas, that isn’t how it will go down.
I will update the blog as soon as I know the results. Prayers are always welcome.
That’s it for tonight! Nite, nite.
xoxo
Hilary