Chin Up, Spirits High

Posted on October 16, 2015 by jsultaire

The “busy season” in advising is both exciting and draining leaving me pretty pooped by the end of the week. Today at chemo I will typically fall asleep through most of it once the Benadryl hits my veins. This time I totally passed out BEFORE the pharmacy even approved my blood work. Legitimately I arrived, got situated, Rosa accessed my port and hooked me up to saline while we waited for the green light from pharmacy to let us proceed with pre-drugs/chemo and I was totally out.

It’s just as well since the cable at he hospital has switched up their programming from Law and Order SVU to Law and Order Criminal Intent on not one, but TWO channels. I might need to write an angry letter. Scratch that, write a kind letter and play the cancer card. If there is a time to use the c-card, this is it!

It’s okay detective Tutuola, I’ll forgive.

Anyway, the infusion went fine and I just slept and slept. I actually slept so much I forgot to ask Rosa what my new CA-125 results were!

When I got home I crawled into bed and texted the ever reliable Sheila: “I was such a sleepy head today I didn’t even ask Rosa about my blood work. What’s the verdict dude?” I dropped my phone onto the bed next to me, buried my head in pillows and blankets and proceeded to pass out for another hour.

I awoke to about 14 missed texts, mainly from an excitable Sheila Enderby.

It turns out that my CA-125 has DECREASED from 742 to 455!!!

I haven’t had a CA-125 this low in well over a year and half or more. In fact I never had a CA-125 below 995 through the duration of the MEK inhibitor clinical trial at Mass General.

Here is a nice little recap, thank you Roger Williams for the 8 am required “Intro to Excel” course that made this half-assed graph possible:

I have had so many days where I have had doubts and concerns. Perhaps in the future I will pursue a revolutionary new treatment that could obliterate the existing cancer but for now I am so pleased to see some REAL progress. Numbers that may reflect moving in a more positive direction.

I am so grateful to start off this next cycle with a bang. If you work at Women and Infants hospital and reading this- be forewarned that you’re going to be getting mega hugs (Heather- I already told Sheila that you get TWO, just ’cause).

Also- this is kind of an after thought but for my friends undergoing Taxol treatment PLEASE listen to your nutritionist and take L-Glutamine 3x per day. I started to feel some neuropathy come on (loss of feeling in hands/feet/fingers/toes) and since starting Glutamine I can already feel the impact! If this is a healthy choice for your body and approved by your doctor/nutritionist please go for it.

Anyway, that is all I have got for today.

Have a great weekend everyone!

Tired & Wired

Posted on October 7, 2015 by jsultaire

It’s possible that I’m still recovering from the excitement of the Izzy Gala and NOCC walk and that was almost two weeks ago. I don’t think my body has quite caught up. I have had another round of chemo since and feel perpetually tired and amped up all at the same time.

Sleeping well has been challenging for a combination of reasons. I lay in bed thinking about what I need to do that next day at work, what chores sit undone, what I’m going to eat, treatment schedules, how the new season of Empire will unfold, my hopes, my dreams, my goals… Over and over and over I have these rapid fire thoughts until I finally fall asleep. My weird dreams take over from this point. It’s as if there is a dreamland director saying: “Okay folks, I’ll take it from here. Okay Sam and Diane from Cheers, are you here? GOOD. I need you to make an unexplained appearance in the chemo unit while Jess panics to review a degree audit for a student before the Hamburglar enters the room to stuff Pad Thai in her socks.”

Okay, that’s totally made up but if you’ve ever had a stress dream you get the gist of how you feel when you wake up- totally and utterly unrested.I t’s not that I am even “stressed” in a negative sense, just rapidly thinking. On top of the endless thoughts, eternal acid reflux wakes me up roughly 3-4 times per night.

The reflux should subside soon because Dr. Robison agreed to switch me back to Omeprazole. If anyone reading this suffers from chronic heart burn listen up. YOU NEED THIS IN YOUR LIFE. Omeprazole is a medication that has been sent down from the heavens on a silver platter by actual angels. Your life will change and soon mine will too. If I’m going to have insane stress dreams, without reflux I’ll at least be more likely to ride out the madness until morning.

It is clear that I have quite a bit going on and need to work on quieting my mind before bed. I know what works for me: Hot shower/bath + chamomile tea + no electronics at least 30 minutes before bed + a Sleep Sonic CD to drift off to = Slam dunk. The key is doing this every night. I’ve had my tea so far tonight so it’s a start.

Aside from regulating sleep and managing fatigue, things are actually pretty good right now. Actually, being the medical anomaly that I am, some odd things are happening to my benefit…

Despite lingering soreness, I am pretty sure that my fingernails have stopped lifting. There was a point over the summer where I couldn’t even scratch my head for fear of losing a nail. Despite the discoloration (they’ve turned blue/black/green/gross) they feel stronger. Why? No effing clue. Not questioning it. Additionally, my hair is growing back! All of it! Even the chunks that totally fell out earlier in the summer. I’m looking forward to growing out my locks again. Hopefully in a few weeks I’ll feel comfortable enough go sans hat to work!

Over dinner last night I told Sheila about these strange occurrences and half-jokingly asked her if they are swapping out Taxol with a placebo. That was answered with an emphatic “NO”. So again, I’ll just be happy that my hair and nails are pulling through and not ask questions.

Final report of the evening is my personal favorite!

At work I have the great fortune of interacting with college students every single day. Every one of them unique, passionate, and engaged in their own way. It is my greatest joy to see students develop as each semester passes. It’s nearly impossible not to feel connected to many of these young adults as their undergraduate advisor.

As of this week, I get to experience that connectedness in a different capacity (don’t worry I’m not changing jobs!). Bryant’s Colleges Against Cancer has approached me to co-advise their club with the magnificent Amanda McGrath. I couldn’t be more excited to use this crummy experience and channel that energy into a campus community that has served me so well through this difficult time.

I’ll chalk that up to another cancer silver lining 🙂

I hope everyone is having a wonderful week. I’m off to fend off some more stress dreams. G’night and continued gratitude.

THANK-YOU

Posted on September 29, 2015 by jsultaire

After working on this blog for the vast majority of the time I have had cancer I have documented dismal, hopeful, and the mundane days alike. If nothing else, this particular post is meant to express the pure joy and gratitude I have in reflection of this past weekend’s activities: The Izzy Gala and the 2015 NOCC Walk to Break the Silence on Ovarian Cancer.

The entire weekend was tied to cancer in some way, shape or form, yet none of it was dark or dismal. It screamed community and comfort.

I had been looking forward to this weekend for weeks now and it delivered in every way. In light of finding out that my CA-125 had decreased a smidgen from 777 to 742 I was already elated going into the weekend. I just needed one little decrease to reinvigorate me and damnnit I got it!

Here is a reenactment of what I felt just in case the 600 gif’s from the last post weren’t enough to express myself:

Even with a Taxol and Avastin infusion on Friday, nothing was going to kill my vibe.

The 4th Annual Izzy Gala:

Many of you know that an organization that is very special to me is The Izzy Foundation. It is special for a number of reasons but mainly because it operates in memory of Dr. Tina Robison’s daughter Isabelle, who “earned her angel wings” at 3 years old after battling Stage 4 Rhabdomyosarcoma. In spite of Izzy leaving the physical world far too soon, the Izzy Foundation has grown to support other children facing debilitating illness and their families.

One of the highlights of the gala is when they award scholarships to children with illness, child survivors and their siblings! This year $21,000 in scholarships were awarded to amazing young people from coast to coast. Many of them were able to attend the gala and be honored in person.

The night consisted of a live and silent auction, dinner, and dancing. It certainly is not a stuffy event. It is “purple tie” which means black tie “with an Izzy twist” so everyone is draped in purple, her favorite color.

(oh and yes, ever the gentleman, my handsome date brought me purple flowers to highlight the occasion)

When I walked into the ballroom that night the first person I spotted was Dr. Robison and her husband Kyle. She looked stunning per usual. I swear she must have made some sort of deal with Ursula the sea witch to look THAT good all the time AND be an amazing gyn oncologist AND run a baller non-profit.

Dr. Robison caught my eye and ran right over to Cory and I greeting us with giant hugs. She was genuinely happy to see us and as always, I was just as happy to see her. She mentioned her excitement over the lowered CA-125 then said: “You will always be my guest at the Izzy Gala and there will be many, many, more Izzy Gala’s in your future.” It was sweet and reassuring as if to suggest: “We’re in this together and I’ve got your back”.

(^I wish this came out a tad more clearly. I snuck this shot right before Tina and Kyle went on stage to make their speeches. Just a sweet little moment between husband and wife)

Overall it was a beautiful night. It’s always great to have an excuse to throw on a gown and get dolled up.

Shout out to Danielle at Ky Michaels Salon for doing such a faboosh job on my make up! She really nailed my only instructions: “glammed up but not drag queen”.

Giant thank-you to Cory for getting dressed up with me and making sure that it was the most beautiful evening. I couldn’t ask for a better boyfriend.

Oh you thought the weekend ended there? OH no. Sunday was just as great.

The 2015 NOCC Walk to Break the Silence on Ovarian Cancer:

After I had recurred at the end of 2013, I was feeling a whole mess of emotions. Partially I was desperately seeking out community from others that could relate to my challenges. The other part was a desire to “pay it forward” for all of the care and support I had received to that point. That is really when I discovered the RI chapter of the National Ovarian Cancer Coalition.

Since stumbling across this organization I’ve raised money for them on three separate occasions. I find comfort in knowing that this money is going toward research efforts, education, and support for women and families facing OC. Beyond the actual function of the RI NOCC, I found a group of people with such heart. President of the RI chapter, Donna Ricci, as well as the Morris and O’Donnell families have not only made me feel part of something greater than myself, but also truly loved and encouraged as I have gone through treatment. Whenever I see any one of them, I am made to feel like part of their family.

As a result of participating in the NOCC walk two years consecutively, I have also had the pleasure of meeting other OC cancer crushers. This year one of my favorite new faces was Dorinda, one of Sheila’s favorites. She was stunning and sweet. It was no surprise to me why Sheila adores her.

Last year as the survivors lined up to be recognized on stage I had the great fortune of meeting Judy, a woman TWELVE years cancer free and her daughter Marybeth. They were probably the nicest people I’ve ever met so naturally when we saw each other this year it was a giant love fest. (Judy- Next year I am mandating that you wear a tutu. Don’t make me pull the cancer card on this one!).

Aside from other survivors it was nice to see my girl Sheila amongst other friendly faces from the infusion center. They are always a ray of sunshine. Plus what screams dedication to the job more than using your day off to STILL support your patients?

Now onto my DREAM team: Teal All Your Friends…

(^ Missing Monica, Kerri, and Diane here 😦 )

Collectively my team raised $4215! We actually ranked third for team donations behind #1 Dorinda’s Diva’s (wooo!) and #2 BankRI. Not too shabby! We couldn’t have done it without your love and genorosity. If you donated, shared the donation page or simply sent me a few words of encouragement, THANK-YOU! Perhaps your donations will lead to a revolutionary treatment or an early detection tool. The possibilities are endless but exist because you cared.

Shout outs to this year’s team: Cory Tysoe, Stacey Goldman, Michelle Fabiaschi, Sarah Breen, Emily Nason, Matt Weese, Monica Houde, Kerri Forbes, Diane Ruotolo, Johanna Fleisher, Kelly Blessing, Mrs. Blessing, Eileen “Killer” McKinney, Charles “The King” Ransom, Anne “Rockin” Ransom, & our furry mascots Austen and Brick (oh and Brian Eastman even though he ditched us to oogle Tom Brady at Gillette).

To the team- your energy, enthusiasm, and endless supply of humor made this walk beyond special and memorable.

‘Twas a great day to celebrate with great people and honor equally great people that have left us after their fight with OC.

In reflection of a weekend full of light and positivity, it’s hard to believe that the reason everyone had come together for each event was because of cancer. Cancer so frequently brings about distress and heartache, fear, turmoil- but for one weekend we could laugh in the face of disease and lift each other up in the name of community.

Cheers to everyone near and far that played a role in making this weekend one for the books.

A Glimmer of Progress

Posted on September 24, 2015 by jsultaire

I walked into my blood draw this morning, told Leah (the phlebotomist) to cross her fingers for improvement, went to work, and carried on with my day. On the heels of a steadily rising CA-125, I wasn’t expecting miracles. I had mentally prepared myself for the possibility that the CA-125 could increase again, warrant a CT scan, and we would just have to go from there.

As I mentioned in my last post, I was feeling at peace knowing that we have multiple contingency plans in place should the number continue to climb. I can say that since then, I’ve had a truly great week. Although nothing was certain, I had a stronger feeling of security moving forward. I cannot quite articulate why this week was different but I just felt like I was in a better place. I was able to have a fun filled weekend with friends and Cory. I generally felt focused and on point at work. Despite the never ending fatigue I felt a renewed energy that was certainly more mental than physical. I grocery shopped and prepared healthy meals full of fruits and veggies for the week. I did laundry and really cleaned the apartment (dish mountain was conquered…finally). I was even able to get a couple small work outs in.

It’s not perfect, I was at peace with what is.

Going into the blood test I had high hopes but was not totally fixated on the outcome.

Well guess what?

MY CA-125 DECREASED BY 35!!!!!!! It’s a small improvement but it’s something. I would have been amped for a 5 point decrease at this rate. I haven’t seen a decrease in weeks. Maybe it’s a fluke but for today and the next three weeks, it feels like progress.

So with that I leave you with all the feels…

Contingency Plans

Posted on September 18, 2015 by jsultaire

Little by little I am starting to get a sense of where this treatment plan is going. Baby steps.

I saw my oncologist, Dr. Robison, early this morning before chemo. I had approached this check-up with no expectations. Quite frankly I just assumed it would be a quickie visit: Listen to lungs, feel my belly, take notes on the extent of the side effects, girl talk for a bit, then send me on my way. I was partly right but we did have a productive conversation about future treatment.

In more recent previous posts I had talked a little bit about the frustration I was feeling over not feeling like I was progressing. There is no finish line, no end date, no goal to strive for other than keeping my chin up and staying the course. After my visit with Dr. Robison I left feeling relieved and at ease with what may come even though it is still very uncertain.

I am generally a planner. I like to have an idea of what is to come. With that in mind, I am also fairly adaptable and as long as some sort of plan is in place I can roll with that plan being altered. Bottom line, I do not want to feel stuck or stagnant.

We spoke openly about what tricks she may have up her sleeve for me in the event that the Taxol/Avastin combination is no longer best the course of treatment. In a nutshell this is a tentative plan of attack:

Scenario #1: We take a CA-125 bloodtest next week and the results show a decrease

Stay the course with Taxol/Avastin.

Scenario #2: We take a CA-125 blood test next week and the results are unchanged/slightly increase (ex: by 20 or so)

Still stable, stay the course with Taxol/Avastin.

Scenario #3: We take a CA-125 blood test next week and the results increase by about 50 or more –> Conduct a CT scan to get a visual on what is actually happening. Is the disease unchanged or progressive?

If we do a CT scan and the imaging shows that the tumors are unchanged and there is no new progressive disease we would be inclined to still stay the course with Taxol/Avastin as stable (no new growth = good)
If we do a CT scan and the imaging shows progressive disease (new tumors/growth) we may move to a different type of chemotherapy called Doxil.

So what is Doxil you ask?

Doxil is a platinum based chemotherapy called an anthracycline used commonly in recurring low grade ovarian cancer. The American Cancer Society was kind enough to explain this online in plain English for me. This just means that the drug targets enzymes involved in the replication of DNA. Its job is to destroy the cancer cells formed by the botched DNA. Like Taxol, it is not exactly a targeted therapy so it can also destroy normal tissue. One of the benefits of this drug is that it stays in your system a little longer because it is designed to go almost undetected by the immune system. This allows the drug more time to do its job. Or so I read…I am no means an expert on this drug aside from a basic google search.

Based on what I have been told by Dr. Robison and Rosa, my nurse, Doxil is also pretty tolerable. The most common side effects are skin rash (tinging/burning/flaking of the skin on palms of hands and bottoms of feet) and mouth sores. These side effects worry me because I have had variations of both in the past and it is not pleasant. BUT there are always risks with any medication.

IF we decided that a switch to Doxil would be the next step, and it may not need to be, the infusions would only last about an hour once per month. The only other downside is that I would need to be the most patient patient. I was told that they do not typically see any immediate impact on the tumor marker for the first few cycles. It would be another exercise in trust.

The other option that I inquired about is immunotherapy since it is being discussed at length in health media as of late. There is an immunotherapy trial going on at WIH currently but Dr. Robison did not feel that this particular trial is my best next step just yet. She is not ruling it out for the future if it is appropriate for my circumstances down the line.

A lot of information to take in, right? Remember, the plan may not even change! I am just relieved to know what my options are and how I can mentally/physically prepare for what is to come. I really appreciate that my doctor is always one step ahead of me, keeps me informed, doesn’t dismiss my concerns, and is honest with me. That is so important in a doctor/patient relationship.

After the appointment I headed over to the infusion center to see my girl Rosa for Taxol. One of my cancer crushing buddies was kind enough to come by with a HALF DOZEN Allie’s Donuts. If you are from the Rhode Island area- you know what I’m talking about. It’s sugar crack amazing heaven in a box.

Thank you for the visit and treats Jocelyne!

All in all I am feeling ready to move forward no matter what is to come. I find comfort in knowing I have options. Stay tuned for my create your own cancer adventure as we will know more next week.

Vacations & Expectations

Posted on August 27, 2015 by jsultaire

*Blows dust off of keyboard*

I have been slacking on the entries this month. Not for lack of interest or not having any thoughts to share but every time I sat down to articulate them I just couldn’t. But here I am- on a plane with several hours to go. I might as well use this time to collect my thoughts.

Right now I am en route to beautiful San Jose, California for a real, much needed, vacation. I will be visiting my brother and hoping so see some of the friendly faces that make up his adopted “west coast family”. I already told Adam that since my appetite is in working order that an In N’ Out Burger (animal style of course) was a necessity.

I opted for the cheapest flight through Southwest and was blown away by the affordability. To no one’s surprise that means flying from Providence to Baltimore to San Diego THEN San Jose. Despite a long day of flying I have been fortunate to be seated next to some lovely people (and avoid the Detroit airport for once).

As I lined up to board my first flight, distracted by matching up ‘B17’ with the appropriate place in line, I hear a familar voice in front of me say “oh hi!”. It was Erin, a resident at Women and Infants.

If anyone is new to the blog or needs a refresher, Erin was the doctor that was responsible for inserting an NG tube into me during the first intestinal obstruction. It was traumatizing for all parties involved. She felt so badly about it that she visited me in the hospital after her shift every single day. In fact, she always seems to find me when I am inpatient which brings a smile to my (often delirious) face. In short, a surprise catch-up with Erin on our way to Baltimore was beyond exciting.

With the exception of a surprise plane ride alongside Erin, I am free of the hospital for this week. My oncologist kindly granted me a week off to travel. Actually, Dr. Robison mandated that since I am in California I must eat a burrito, like a good one. Welp, doctor’s orders.

A week off from treatment couldn’t have come at a better time. The time I would have spent this morning getting blood drawn and rushing to work was spent entirely in bed easing into the day. Bliss.

Over the past few weeks I have gone through periods of feeling a little deflated. I recently had a discussion with my oncologist about expectations. Dr. Robison can see that I am disappointed that there is no established “end date” for when the taxol (chemo part) might end. We had a healthy discussion about, based on what we know, what this means for my immediate and long-term future.

From a clinical perspective, the goal is treat to prevent new tumors. From a patient perspective, my perfect-world scenario would be to treat to prevent new tumors and get rid of the ones I already have lurking around my abdominal cavity. I constantly toggle between feeling wildly optimistic that I can achieve a cancer free life (someday) and settling with the fact that the cancer may never entirely leave me but with treatment/maintenance I could still live with a pretty good quality of life.

After I left treatment last week I was frustrated, I didn’t want to be made to reconsider my expectations. After a week of sulking, crying, writing and rewriting I think the only conclusion that I can draw is that it is important that I recognize that this process is going to continue to be long term. It is important that I dig deep and accept that if these tumors are going to be freeloaders and live inside of me for the long haul but aren’t growing, I am still winning. Most critically, it is essential that in accepting these realities I still allow myself to believe in a world where I no longer have cancer.

No one knows the outcome of this story. Establishing realistic expectations and dreaming do not necessarily negate one another. So I choose to accept and believe simultaneously to the best of my ability.

I know it sounds like I have this all figured out in a nutshell but I assure you that I will continue to grapple with it until the cows come home. Friends and family are ever important in maintaining the balance. Strangers too…

I am currently sitting next to a woman on the second leg of this journey (Baltimore –> San Diego). It feels like a chance encounter where we just happened to be in the right place at the right time. This woman noticed that I was drafting a blog entry and asked: “are you a blogger?” from there we discussed blogging, writing, etc. Naturally it came out that I write about living with cancer to which she responded: “I am a cancer survivor too, breast.” Her name is Billie and she is a minister. She is returning from a trip visiting her grandchildren in Virginia. She has overcome many devastating tragedies in her life, yet maintains such honest and positive perspective.

We spoke a lot about our common thread, cancer. Treatments, surgeries, being bald, confronting changes in the body, menopause, relationships evolving and dissipating. We also chatted about books, goals, and bucket lists. Billie is the type of person that has a lot to say, but no words are wasteful. She opened herself up to me in a way that was not imposing and I found her to be most insightful. She is a walking, talking, breathing reminder to keep living and finding comfort and joy in the simple pleasures.

Thank you Southwest, you’ve nailed this trip thus far.

Speaking of thank-you’s I would like to thank everyone that has donated to the 2015 National Ovarian Cancer Coalition Walk to Break the Silence. On Sunday, September 27th I will be joining the Rhode Island chapter of the NOCC for their annual walk. I created my fundraising page just two or three days ago and already donations are pouring in! I am in awe of your generosity and support.

I would also like to thank Miss Stacey Applesauce Goldman and Emily Nason for registering as team members. In speaking with other friends, it sounds like we are going to have a solid posse on the day of! If you would like to join this team, Teal All Your Friends, you can do so through my donation page in the top right corner.

Seriously though…

“…good news and bad news are often relative to your expectations”

Posted on August 8, 2015 by jsultaire

*Dramatic SIGH* I won’t lie to you friends, I have been having a tough couple of weeks. Part physical, part emotional, there has been a fair bit of annoyances/disappointments to process. Yesterday I went in for my weekly treatment. This … Continue reading →

You bleed it, you bought it

Posted on July 29, 2015 by jsultaire

(PREFACE: Earlier I accidentally published a draft of this entry and quickly deleted it. For subscribers- please ignore the first email you received and read this new, improved, polished version. Thanks! -The Management)

Over course of the past year I spent some time on the Women and Infant’s Hospital Family and Patient Advocacy Council (it’s a mouthful…thank goodness we didn’t get business cards). In that time I had the great pleasure of meeting a few other patients as well as connecting with staff and administrators of the hospital. There was one ovarian cancer patient that stood out to me, Rhonda. This woman is kind, honest, and upfront with her ideas and experiences.

There was one day several months ago when I was at the point in my clinical trial treatment where I just had enough. I hadn’t vocalized it to my medical team yet and it was causing me a great deal of anxiety. After the PFAC meeting I happened to pass Rhonda in the hallway on the way to the bathroom. Now keep in mind that outside of this group, I really didn’t know her at all. She asked how I was doing and often times those words are just enough to drive an overly emotional person like myself into a tear fueled tizzy.

I divulged to her the inner conflict that I was having about my treatment options and the fear that I was making the wrong choice in light of how high the stakes are. She listened intently, not breaking eye contact. You can really see it in someone’s eyes when they understand your fear and struggle. She knew well. Despite having high stakes challenges of her own, Rhonda was reassuring and purely optimistic without being dismissive. I felt so understood by someone that didn’t have to understand me. I felt so cared for by someone that didn’t have to care- but she did. That interaction stayed with me.

As time went on and transitioned into new treatment I felt that it was best to take some time away from the council. That being said I haven’t seen Rhonda but through a very sweet oncology nurse, more recently we were able to keep up with one another.

I received news that Rhonda left the physical world yesterday morning. I am heartbroken but glad to know that she was at home, surrounded by her loved ones.

Despite our limited interactions, this woman had such a profound impact on me. When I learned of her passing it felt like a punch in the gut. Part sadness for the suffering she and her family endured, especially in her final weeks. Part fear over the grim reality of this disease and how quickly things can change. I am fully aware that we have different bodies, different circumstances, but regardless it hit close to home.

My sincerest condolences go out to anyone that had the pleasure of knowing, treating, or loving this woman. I know she was a fan favorite at WIH.

The last two days since finding out about Rhonda has left me feeling a bit out of sorts. After work today I was sitting in my apartment trying to distract myself with Netflix but I was just too antsy. After running an errand I ended up at my Mecca, the book store. I am the child of two voracious readers so it is only appropriate that in times of inner turmoil, I turn to the bookstore for distraction and clarity.There is a little book shop in Wayland Square called Books on the Square that I absolutely love.

(Don’t worry this is where the story takes an entertaining turn)

So I’m browsing the latest selections and pick up a book off of the Biography shelf purely for its eye catching title (and NYT Best Seller Status)

I like to open to a random page and read a paragraph out of context to get a feel for a book when I’m browsing. I crack the book open (honestly thinking that I’ll just read a few lines, say ehhh, and return it to its standard, upright position). Before I can read a single word- DRIP. DROP. Captain we have a nosebleed.

I BLED into this book. Seriously…

It also seeped into the page before and after it. Whoops.

I did have that momentary: “I could probably just put this back…” thought but in good conscience I couldn’t possibly re-shelve a book that I just BLED into.

The bookstore clerk was kind enough to provide me with some tissues as I continued to gush blood into my hand. I politely tried not to leave my DNA all over the store and quickly excused myself to the bathroom to clean myself up. When the pipelines dried up, I returned to the counter and sheepishly shrugged: “ummm so I guess I’m buying this now?” The clerk must have felt bad for me because she gave me a 30% discount ( I mean after all, there was blood in my book. No need to point fingers as to how it got there…).

Well my friends, there are no accidents. I think I was destined to read this book that I was going to carelessly return to the shelf (pre-Bloodkstock ’15). It turns out that The End of Your Life Book Club recounts a man’s experience of his mother’s pancreatic cancer treatment and the bond that they shared over trading and discussing literature. From what I have read so far, it brings to light how powerful the written word can be as a common thread between individuals facing great upheaval.

I am only 45 pages in but perhaps there is something to be learned from this book. If there is, I will be sure to report back! One of the book’s themes deals with issues of mortality. If anything it will force me to really process Rhonda’s passing and not internalize it from a place of fear but more from a place of acceptance and understanding.

Well friends, read on (but don’t bleed all over the merchandise, it’s frowned upon)

Rhonda- keep shining 🙂

“She is BALD, Jerry”

Posted on July 24, 2015 by jsultaire

I will preface this entry by saying that I am fresh off of chemo this morning and still feeling the Benadryl haze. I typically try not write the same day I receive chemo. My fear is perceiving that I am … Continue reading →

“Your stars will realign and things will get a little bit better”

Posted on July 18, 2015 by jsultaire

I read this article in Cosmopolitan a few days ago (thanks Mom!): I Have Cancer…And It Sucks by 25-year old Deanna Pai, Cosmo Beauty Editor. Go ahead, it’s a quick read. I’ll wait… Crib notes for lazy bones: Deanna is young, has … Continue reading →

The Cancer Chronicles

My account of the bold, bald, battle

Tag Archives: cancer

Chin Up, Spirits High

It turns out that my CA-125 has DECREASED from 742 to 455!!!

Tired & Wired

THANK-YOU

A Glimmer of Progress

Contingency Plans

Vacations & Expectations

“…good news and bad news are often relative to your expectations”

You bleed it, you bought it

“She is BALD, Jerry”

“Your stars will realign and things will get a little bit better”

It turns out that my CA-125 has DECREASED from 742 to 455!!!

Share this:

Share this:

Share this:

Share this:

Share this:

Share this:

Share this:

Share this:

Share this:

Share this: