Cancerversary: Year 2 in Review

It is difficult for me to wrap my head around the fact that exactly two years ago today I was sitting in a hospital bed and a doctor was telling me that I had cancer. In some respects it feels like it just happened, in others it seems lightyears away from where I am now. Two years later I still have cancer and two years later I am still thriving.

This year was so much different than my first year with cancer.

1.) I think the most obvious difference is the course of treatment and the physical impact it had on me. In year one I had dropped down to 85 pounds, I lost my hair, and walked with a cane. This year, despite having ANOTHER major invasive surgery and undergoing a different kind of chemo, my illness was not as obvious to others that did not know me. My hair is back, my weight is normal, and despite being constantly pale (I think I would have been anyway) I look like any other person.

2.) This experience was more solitary in nature. I wouldn’t say that it was private as I clearly spill my guts to the world in the blog, but it was different. I take my drugs at home, I am at the hospital less frequently, and my reactions to the drugs typically happen pretty privately (except for that time I threw up on the side of the road on Gano St. after the NOCC walk. That was super public.).

At the beginning of my trial I felt really alone. I didn’t know anyone that was doing this trial so I couldn’t really find anyone to relate to. I was transitioning away from Women and Infant’s, an institution so dear to me, and it was hard not constantly seeing Dr. Robison, Sheila, or my social workers. Between getting used to this trial drug and navigating my  new-new-normal, I felt pretty lost for a few months.

3.) I experienced survivor’s guilt for the first time. There is a young woman with OC that touched my life in a significant way this past spring. Her influence is a major reason that I chose this trial. Currently, I am living quite happily and semi-normally while she has just been moved into hospice. It’s not fair and that has really bothered me.

4.) I have the ability to give back to a community that has served me with such love and compassion. This year has consisted of fundraisers, a service trip in DC, and joining the Women and Infants Oncology Patient & Family Advisory Council. I couldn’t ask for better opportunities to serve the cancer community and beyond.

5.) I have bought into the notion that cancer is not black and white. It is possible that illness could be part of my life for a long time. Regardless, I know and believe that I will continue to have a very fulfilling life.

What hasn’t changed? I still have the greatest friends and family of all time!

There were plenty of hardships and I even considered posting some of the pictures that I have taken to document the more difficult times but I when I look back on the past year, it was still so rich with fun, love, and great memories that I think that deserves to be highlighted most.

I have said time and time again, I am not afraid to die but my greatest fear is a life unfulfilled. After looking back on these joyous moments, I can say that my family and friends certainly ensure a fulfilling life.

Cheers to many more years.

Broke the curse

The long anticipated CT scan results are in (as of Tuesday, sorry). As I discussed in my previous post I was feeling a bit of anxiety surrounding this scan. Considering that each winter since 2012 I have been told that I have cancer (or cancer, again) I could not stop myself from thinking that perhaps I had fallen into the depths of a bad health curse. This curse surfaces every November and plagues every winter. This is a piss poor attitude to go into a doctor’s appointment with because it is based on something as imaginary as unicorns. My circumstances are different, I’m under different treatment, and everything leading up to the CT has showed positive trends.

My CT scan results showed that even with the dose reduction, the tumors have reduced in size by a total of 27% since we have started the trial.

Cue celebration:

jay-z-and-kanye-west-new-years-eve

Recap:

CT scan #1- August: 5%

CT scan #2- September: 18%

CT scan #3- November: 27% 

I am 3% away from what is considered a partial response. Dr. Birrer said that he was pretty confident that by my next visit in January, we would hit a major milestone. He also said that at some point it will taper off likely around 50%. The impression that I got is that (although we can hope!) I should not set my expectation for 100% shrinkage. BUT for now let’s keep celebrating every victory.

SO, that’s good.

This past week was all over the place. Last weekend Cory and I took a trip to Portland, Maine. It was absolutely beautiful.

portlandbikepath portlandart

 

meadtastingsign mead

On Saturday we spent the day taking a walk along the bike path, going to a mead tasting, annnnnnnd watching tv in the hotel as I violently vomited for 8 hours. Yep not all roses. Little did I know that this was the beginning of a virus. We had just waited an hour to get into a restaurant called Duck Fat (holy-overindulgence Batman).

duckfat

We ordered our food and sadly I only had 3 fries and 2 bites of soup before I agreed we had to pack up our food to go and head back to the hotel. I was in so much pain that I thought I was having another bowel obstruction but it was just my guts twisting and turning as I vomited every ounce of anything that was in my system at the time. Per usual Cory was a champ and took care of me. I had forgotten to pack pj’s so he even surprised me with fun jammies when he went out to get himself some dinner.

jammies

The next day I woke up and felt much better so our Portland adventure lived on! We walked all around old Portland and went into some very interesting and adorable shops. We stumbled upon a fence where people have attached locks with their initials or names. Very similar to what can be found in other cities and parts of the world. It just so happened that I carry around a lock in my purse for the gym so I had one on hand! We awkwardly hijacked a sharpie from a Starbucks barista across the street and initialed the lock to add to the fence. Next time I should get an engraved one that says: “I came, I puked, I conquered”.

portlandlocks

After a full day of wandering around historic Portland we couldn’t leave without doing two things:

1.) Eating a lobster roll

lobsterroll

2.) Checking out the lighthouse:

coryjess lighthouse

Despite getting really, alarmingly, sick…it was a solid weekend get-away. We didn’t make it to any of the breweries but perhaps next time.

So after feeling generally well on Sunday (minus some stomach discomfort later that night) one can imagine my surprise when I woke up on Monday with a 102.6 temperature. I was so delirious that I couldn’t even drive myself to the walk-in clinic (let alone walk in a straight line). Thank you to Tom Tom Blythe for picking me up and Katie for arranging it! After 3 hours of testing and waiting they were able to rule out the flu, mono, and strep. They chalked it up to “some sort of virus” and sent me home with the recommendation of Motrin or Tylenol. My poor parents canceled their plans, drove up 2 1/2 hours to pick me up from the walk-in and take care of me. When we got home to my apartment, they cooked for me, did my dishes, and made sure I was okay. What good sports! They even came back the next day and took me to Boston for my doctor’s appointment. THANK-YOU Mom and Dad! I really needed them there so it was nice to have the support as well as share the good news from MGH in person.

I am bouncing back quickly from the virus and feel just fine now! Thank goodness.

On a final note, I would like to congratulate my homegirl Jaclyn Munson on her acceptance to law school!

jaclyn

May you give hundreds of side-eye looks of death to your peers on the road to a JD!

Cheers.

 

 

 

Diagnostic Imaging Jitters

Considering that I have a 7am CT scan tomorrow, I should really be asleep right now. It just hit me that I’m a tiny bit nervous. I’m not concerned about the CT scan itself, I’ve had more than I can count. Generally it’s a pretty straight forward event: 1.) Change into gown 2.) Drink two cups of water 3.) Have nurse access chest port 4.) Pump blue contrast dye through port (EDIT: not blue and not sure why I assumed that) 5.) Lay down (and always accept the warm blanket when offered) 6.) Listen to the robot voice cues: “BREATHE. IN. HOLD. YOUR. BREATH. (pause) BREATHE.” 7.) Glamour shots.

Truth be told it’s the third most relaxing test behind echocardiogram and ultrasound (if you don’t count the needle part). Or perhaps I’m ranking it third because the technicians in the Women and Infant’s Radiology department are some of the nicest people ever so all in all it has become tolerable.

Anyway, the reason I am feeling a little nervous is because I’ve seen great progress since I have started the trial when I was on the max dose. I would hate for that progress to lose its momentum. This will be the first CT scan since the dose reduction so I am not sure what to expect. The obvious best case scenario would be that there is continued tumor reduction and a less favorable but still acceptable outcome would be no change. I doubt that there will be growth considering that my chemo dosage is still considerably high. Despite the outcome, I know in my heart that dose reducing was the best option and I regret nothing.

The most control I have over this situation is to just keep choking down the pills. The outcome is out of my hands so these butterflies in my stomach need to calm the hell down so I can get some sleep.

On a positive note:

MGH ordered an ultrasound on my right leg due to the excessive swelling. As I suspected the ultrasound showed no signs of a blood clot so I was pleased with this news. The last thing I need is a surprise case of deep vein thrombosis. Even the name of the condition sounds painful. Anyway, the jury is still out on my right cankle but it’s nothing serious.

But really this time- SLEEP.

Goodnight moon.

“Are you tired? Rundown? Listless? Do you poop out at parties?”

Homegirl needs some Vitameatavegamin. Vitameatvegamin

I’m running on fumes here. I had an oddly energetic day on Monday but other than that I am pretty beat.

Seriously, I don’t know if the fatigue is caused by the trial or because your late 20’s equates to traveling at warp speed into full-on chronic exhaustion. If I feel this crappy now, I am doomed when I start pushing 90.

Work as of late has been demanding (as I anticipated). This time of year brings in a high volume of students which means little down time, some late nights, and the constant feeling that you are forgetting something… DAMNIT what am I forgetting?! Luckily we have a really great staff that collectively does an excellent job during this high-stress time of year. This busy period lasts from about early October to late November. Come December 5th-ish I think I’ll finally be able to breathe.

In the interest of self-care I have been making it a point to take a full lunch hour as often as possible or at the very least close the door to my office during lunch and quietly answer some emails. At minimum I make myself take 30 minutes to clear my head. On my worst days I have even sprawled out under my desk with the lights off. You do what you have to do, right?

I sent myself home from work last Thursday on a morning that followed the pattern of : student, vomit, student, vomit, etc.  I can be a little stubborn when it comes to going home sick. Perhaps it’s the “Santoro girl” in me or the self-imposed guilt but I rarely send myself home. This time I knew that a fully booked afternoon of student appointments would not be productive, fair to my students, and certainly not fair to me ailing body. The afternoon in bed did me well and I was back to work the next day.

As I have reported previously the side effects of the chemo trial have curtailed a bit:

  • My stomach still isn’t right but with some powerful medication I can keep it under control more often than not.
  • Nausea/vomiting still happens but not as often
  • My face, chest, and back is no longer covered in a rash and pimples (THANK THE LAWWWWD)
  • Appetite has improved but I’m still rarely in the mood to stuff my face. Somehow that does not stop me from housing slices from Pizzeria Gusto on the late night (I have a problem).
  • Swelling of the legs is still an issue. My feet and ankles are constantly swollen. Sometimes I cannot fit my feet into certain shoes. I flipped over my recycling bin at work to elevate the more swollen foot but it doesn’t help too much. I just try to elevate as much as possible when I get home.

Since I only go to the doctor every other month now this is what you can look forward to in November:

November 12th, 7am CT Scan (Please join me in thinking positively that my tumors are continuing to shrink. Stable is fine but a decrease in tumor mass would be just lovely)

-November 18th, full day in Boston. Battery of eye exams, echocardiogram, pre-dose and post-dose EKG, bloodwork, and review of my CT scan.

November 23rd, my TWO year anniversary of being diagnosed with cancer. Well, time flies when you’re crushing a chronic disease huh? I have a lot of mixed emotions this time around so you can certainly expect a “year in review”

I hope everyone is having a great week! Stay tuned…