I cannot believe this day has arrived, I honestly still do not believe it.
Today I had my CT scan. I was so nervous about what the results would mean that I cried immediately afterward. The technician had to console me. Luckily I had an appointment with my social worker immediately after.
So fast forward to later in the day…
I received a text from my chemo nurse asking me to meet her and her friends out at a bar in Providence. She said she had something for me. So naturally because she’s awesome I met her out. When I got there I asked what she had for me. She told me that she had my CT scan results. I figured they must be good if she’s telling me at a bar…
Then she said the sweetest words I could ever imagine hearing:
“Your CT scan results showed no evidence of disease”
I did it.
After all of the tears, the pain, the fear. I have found the light at the end of the chemo tunnel!
This story is not over by any means. The chronicles continue as I head into my next chapter- aftercare. It will still be difficult in its own way and there will still be lingering fear and anxiety but for now I am proud to say that I effing did it! I will keep you posted when I get the OFFICIAL word from my doctor next week of what is to come.
Thank you to everyone that ever reached out, supported me, and sent love in any way. It was that constant stream of optimism and kindness that has gotten me to where I am today.
Tomorrow is my CT scan. Thinking happy, optimistic, glitter and unicorn filled thoughts. I am hoping that all is normal and that I will not have to have a dreaded 7th round of chemo. Today was supposed to be my “chemo graduation” but there are talks of a 7th round as an insurance policy due to the unexpected jump in my CA125 that I talked about last week. My wise mother reminded me that I have done the work and now it is up to tumor board to decide my fate. They meet on Tuesday and I will meet with my oncologist to find out the results a week from tomorrow. DEEP BREATH…
So tonight I’m leaning on the Serenity Prayer for some perspective:
Time to channel some positive energy people!
Love and gratitude always.
(p.s. Thank you Stacey Goldman for taking off of work to come with me to chemo and make sure that I had the BEST day no matter what. I love you girl)
So this wasn’t my best week. In light of the events in Boston, I don’t think this was anyone’s best week. I should first start by stating how impressed I am by the police, SWAT teams, and basically any one else that put their lives on the lines to ensure that the city of Boston was safe. Thank you to those that sacrificed their safety for the safety of others. I am taking a big sigh of relief knowing that my friends and loved ones in Boston and surrounding towns are unharmed. My heart truly goes out to those that were not so lucky. They will never be forgotten.
So as I started to say, this was not my best week. I pictured my last round of chemo going a lot differently. I was just so damn certain that my CA 125 levels would have dropped below 21 by now and I would be more at peace where where I stand prior to moving on to this next chapter of my journey.
Again, my nurses stressed to me that the CA 125 is just a small piece of the picture and that the jump was not high enough to be alarmed at this time. If it doubles or triples or continues on an upward trend, that’s when we should start to worry. I want to make it clear that I trust and believe my medical team. I’m not trying to make a mountain out of a mull hill. I guess what is hard really grasp unless you are going through this first hand is the lingering fears that bubble up unexpectedly when set backs like this occur. This is a journey that is long, drawn out, painful physically/emotionally, it requires extensive short and longterm sacrifices, and constantly challenges your faith. So when a set back occurs, even a minor set back, the thought of possibly having to experience one more ounce of pain a second longer than you have to can really knock the piss out of you.
Thursday sucked so I did what I always do…just carried on. I somehow channeled the energy to go to the gym and put in a serious workout. It felt great to blow off some steam.
Friday didn’t start off much better than Thursday. Back to the infusion center for another treatment. Luckily, this was my last scheduled infusion of Cisplatin (thank the lord!!!). I have a love/hate relationship with Cisplatin. I love it because it is bathing my guts in poison so I don’t die BUT it destroys my body for days after each infusion. This is my longest of the three infusions per cycle and I am typically done within about 5 1/2 to 6 hours. I have absolutely no idea why, maybe my drip was set slower than it normally is but this infusion lasted 9 hours. I was in that damn chair from 9am until just about 6pm. What made it even more intolerable was the acid reflux that it caused. This is partially my fault because I don’t take my acid reflux medication daily (as it impacts bone density which is not looking so good for me either). I try to take it as needed now that I don’t experience it so often since they initially drained all of that tumor fluid from my abdomen. Regardless my chest was in a fiery hell for the last 5 hours of the infusion and I just wanted to go home and go to bed (especially since the steroids from the day before had kept me up almost all night the night before). Needless to say I was kind of a curmudgeon toward the end of the day. A HUGEEEE thank you goes out to Jen for staying with me in the morning an another giant thank you goes out to Susan for picking me up and waiting with me all of those hours that we did not expect to be there.
One highlight of my day was an unexpected visitor during chemo, Dr. Erin Greenberg! Just as a recap, Dr. Greenberg was on my team during my 10 day stint for the bowel obstruction. She also caused the most traumatic experience of my life- getting an NG tube shoved down my nose while I was awake (Sorry Erin! I know you still feel guilty about that). Despite the “NG Trauma”, Erin was amazing the entire time I was there. We honestly became friends and lord only knows that I needed a friend during that awful experience. Erin would come off of long shifts and hang out in my room for an hour or even longer every single day to talk. She constantly reassured me, made me feel comfortable, and helped to take my mind off of the madness that was this hospital stay. I hadn’t seen her since I left the hospital at the end of February so when I saw her walk into the infusion center I nearly jumped out of my recliner. I was thrilled! I guess yesterday wasn’t all bad.
I came home and passed out for a few hours. John and Brian had planned a “Jock Jams” themed party that I was really looking forward to going to. I LOVE theme parties. Come hell or high water I was going to be there whether that be for 30 minutes or all night. So I peeled myself out of bed, put on my ridiculous neon workout outfit and headed over. I must have gotten a second wind because despite not feeling great I was able to enjoy myself with my friends. Must have been all of the awesome people I was surrounded by 🙂
Here are a few highlights (ok maybe more than a few- so sue me):
(Just to point out my commitment to this theme: Please note my matching tube socks, full on neon, light up bicycle pin, and YES that is a bright yellow fanny pack)
Despite not being in college anymore, drinking like a gallon of water instead of booze, and coming off of 9 hours of chemo- I think this party was a success (more like my ability to survive anything outside of my bed was a success). l am SO happy that I got to end this shitty week by dressing up like fools with with some of the greatest people I know.
Special thanks to our handsome hosts, my Providence brothers- John & Brian
To top off a great night, there was present waiting for me at the party:
Daffodils!!!!
John’s parents read my last blog post and sent me 21 daffodils as a reminder of how close I am to that magic number. Thank you for the encouragement Mr. & Mrs. Galiney! That was incredibly thoughtful.
Since I definitely pushed my limits last night I am taking the entirety of today and tomorrow to do absolutely nothing because I feel like I was hit by a truck. Let the Cisplatin side effects begin…
Last night I was all prepared to write an upbeat post about how my CA 125 levels dropped and how well I’m doing and feeling. I was going to knock you on your ass with positive vibes and post fun meme’s like this (inspired by Tony at http://effleukemia.com):
Today is not that kind of post so bear with me.
This morning I started my last round of chemo. I had a blood test yesterday to check my CBC (Complete Blood Count) and CA 125. The CA 125 is what I was really interested in. Because I had made such a significant drop last time I was really thinking that my numbers would have dropped below 21. I was ready to shout good news from the rooftops until my chemo nurse told me that my CA 125 was 42. The only words I could muster were “Wait, that’s up not down?” Way to go genius (when I say things like this I am shocked that I was awarded a masters degree). I just couldn’t effing believe that after EVERYTHING I’ve been through and how well I’ve been feeling that my numbers didn’t reflect that. Of course I cried because that’s what I do (I’d make a killing bottling my tears if there were a market for it).
My chemo nurse Sheila sat down and hugged me. She reassured me that this is a very very very small jump and she would tell me if she was concerned. She said we should be worried if my numbers double or triple but a jump like this is likely a result of inflammation in the body. Basically this is what a few of my nurses and some other medical professionals that were consulted think: Fluid retention in the legs causes inflammation in the body,inflammation impacts CA 125, thus raised numbers. The CA 125 is only ONE tool used to measure progress and is incredibly variable and different from person to person (examples: zero doesn’t mean cancer free, and normal for one person could be 21 while normal for another person could be 5). My trends over time are good so I have that in my favor. So yes, I get it, this isn’t the end of the world. So no big deal right? Ehhhh kind of. I’m still grappling with the news because once again my expectation clashed with the reality of the situation.
Cancer is a very gray disease. There are no black and white quick answers when it comes to cancer. When you live within the gray the uncertainty can be incredibly anxiety provoking. My anxiety is not overwhelming or overpowering. It does not prevent me from doing my job or exercising or anything like that. There are days from time to time where the lingering uncertainties turn into fear. Facing your own mortality is a process. Though I am so appreciative of the support and reassurance from friends and family, it is important to me to acknowledge the fear as it is a very real and raw part of this experience. I am in a position where I am re-learning how to trust my body. Due to the lack of absolutes involved in my disease, all I can do is blindly trust my body. I think we can all agree that it is a difficult task to trust a person that tried to kill you. The reality of the CA125 elevation is minor, I acknowledge this but it’s also important to think about the emotional impact this has on someone with this disease. At this time I have nothing beside my blood tests to gauge how I am responding to treatment. I have no other peace of mind. I acknowledge that the CA125 is only one tool and the CT scan will be more accurate but I’m left with nothing else to give me any peace of mind for a couple weeks. Again, I just need to trust the process.
So where do I stand? I mean, I’m kind of okay. I’m not cancer free nor can I say that I’m cancer free for 5 years. This is a stage that I fondly refer to as Cancer Purgatory. I’m better than I was before but not quite where I hope to be. Cancer Purgatory is another chapter with its own intricacies. Just because chemo is over or almost over, sometime people just assume you’re okay and a shift in support occurs. This is a hard one to explain because of course you just want people to treat you normally because, you’re still you. The twist is that you’re still you but you’ve changed. You need a different kind of support than you did at the beginning of the journey. The truth of the matter is that you will never really feel totally “okay”. You will have strings of great days and weeks but in the back of your mind you have to come to terms with the fact that this disease is part of you and could potentially affect you in the future. I don’t want you to think that I’m being a Debbie Downer because I can assure you that I’ve been pretty darn positive through this whole journey and still am. Accepting these possibilities, in my opinion, is quite different than being negative. When chemo ends I will still be monitored but not as frequently as I am now, that takes away from peace of mind, especially when aftercare ends. Every headache, pain, bump, rash is harder to brush off now that you know that your body is capable of “turning on you”. I’m anticipating the response to this being “don’t go there now”, “take it one day at a time”, “cool your jets brah”, etc. Tell me that all you want, I’ll tell myself that all I want but the fear is very real and must be dealt with.
On a more positive note…
That being said I am forever lucky to have such a tight support system. I talk about this all the time but it is important to acknowledge the people that are in it for the long haul with you. My family, roommate/”husband”, friends, coworkers, and strangers have gone out of their way to make me feel at peace with my situation. I wouldn’t be doing as well as I am if I was doing this in isolation.
Most recently I have found energy and joy in exercise (man I missed being in the gym!). My trainer Matt is an awesome cheerleader and I am leaps and bounds ahead of where we both thought I would be physically. That is encouraging! We decided that our personal challenge is to be doing one handed push ups by the end of the summer. I’ll post a progression video when we get there. I’m committed to this. I also cannot wait until my leg gets strong enough to run again. Brian Eastman- I will be “danger running” with you before you know it :).
Emotionally I have found strength and understanding through a few people that I never expected who I do not even know in real life. I have found my way to two people battling Leukemia and reading about and corresponding with both of these gentlemen have made me feel…understood? Our situations are so drastically different yet there is enough overlap where I feel like we just get each other. Talking to other young people with cancer is pretty helpful. I benefit from that far more than talking to a 60 year old woman that has the same type of cancer as me. Having cancer at any age is beyond difficult but being young adds different complications. Talking to other twenty-somethings and young professionals who just “get it” is really beneficial. I should get more involved with the Stupid Cancer organization. It’s an organization for young people with all types of cancers. I missed the Boston conference a few weeks ago but hopefully there will be other opportunities to make connections with this group.
Other shout outs….
Many of you were very interested in my eyelash/eyebrow situation. Thank you so so much to Carly, Jes, and the woman from Florida that I’ve never met for sending brow makeup false lashes, glue and gift cards for falsies! I cannot wait to use them and bat those baby blues this weekend. (Shocki and Gomez- expect pictures). Thank you to everyone else that reassured me that I look okay no matter what.
Most importantly:
I am praying for Boston. Living where I do, much like the Sandy Hook Shooting, this hits close to home in so many ways. I have many friends living and working in that area and I am incredibly thankful that they are safe. I hope all of your loved ones are safe as well. That being said, there are many people that need help. Many people whose lives are forever changed. I want to help in some way. I don’t think donating blood is an option for me at this time so if anyone knows of a credible fund to donate to please let me know.
Despite the heart wrenching nature of this tragedy, it is also inspiring to see the kindness that has permeated through the city and beyond. Stories of runners finishing the race then running to Mass General to give blood. Strangers allowing runners and spectators into their homes for water , food and to charge cell phones. First responders quickly intervening to protect and reassure terrified victims. A flood of kindness stemming from incomprehensible circumstances. Community will help us heal through tragedy.
I appreciated this video from Stephen Colbert as he says it best with compassion and humor:
Last but not least…
DAFFODILS ARE FINALLY OUT!!!! They have a pretty short window to grow so seeing them is always exciting. Hands down my favorite flower of all time.
Happy Sunday supporters! This is a long one so grab some coffee and get comfy…
I have lots to catch you up on since I last wrote. I see that many of you clicked the link in my last entry and read the article that painted a vivid picture of what it is like to be battling cancer. I thank you for reading it as I found it to be pretty insightful.
Doctor’s Update:
On Friday I went to the doctor for a routine pre-chemo exam. They did a pelvic exam for the first time in a few months and luckily, everything looked normal as far as she could see. Dr. Robison and I discussed the next steps from here and what I can possibly expect:
Next Thursday, April 18th will be the beginning of my last scheduled cycle of chemo (HOLLERRRRR!). I will have chemo on Thursday and Friday of that week and my last scheduled treatment will happen the following Thursday, April 25th. Stacey, one of my long time best friends/she-wolf, is kindly taking the day off from work to share my last treatment with me. Maybe I should bring some benedryl with me so she can take a nap too because lord only knows I will be passed out the minute that Benedryl IV is hung.
On Friday, April 26th I’m scheduled for another CT Scan of my chest, abdomen, and pelvis.
Following my CT scan Dr. Robison will meet with tumor board. They will look at the trends in my CA125 levels, compare my CT scans to make sure nothing new has surfaced, confirm that I do not need any additional chemotherapy, and agree on a course of action for my aftercare.
A week after my CT scan I will again meet with Dr. Robison to review the decisions that tumor board have made and HOPEFULLY if all goes well, schedule a date with the operating room to remove my intraperitoneal port. Normally this can be removed in the office. Because I have had complications with my intestines and scar tissue in the past, she would prefer to do it in the OR to avoid further complications.
I am very excited to see the end of chemotherapy. I know that I am not out of the woods yet and that I cannot even say that I’m cancer free for another 5 years but it is encouraging to even have a glimmer of hope that chemo is done. I am praying that my CA125 levels continue to drop so that tumor board can feel confident about moving me onto aftercare. A positive outlook has carried me through this experience and has worked up to this point. I am still hoping for the best but preparing for the worst. It will be a punch in the gut if my doctor tells me that they found something abnormal in my CT scan but for my sanity, I can’t go there in my head yet. As far as I am concerned at this moment in time I am going to be okay and I WILL move on to aftercare damnit!
So what is aftercare you ask? Great question! The aftercare option that my doctor is going to pitch to tumor board is immunotherapy called Avastin. Research has supported promising results when treating low grade tumors (like mine) in ovarian cancer. In order for cancer to grow and spread, it needs a blood supply and feeds on vascular areas of the body. Avastin is an antibody that targets the protein responsible for facilitating access to the blood supply. Avastin helps prevent this protein from “gettin’ the goods” so to speak. Non-medical translation: if cancer was a vampire trying to suck my blood, Avastin would drive a sharp wooden steak into its heart. My infusions would only be 30 minutes long every third week for a year and it is known to be well tolerated by many patients. Not too shabby.
Gimpy Leg Update:
I’m getting stronger by the day. Just a few months ago my left leg was so messed up that I couldn’t even cross my legs without physically picking up the leg with my arm. Now I am officially walking up and down stairs! A major milestone for me in this portion of my recovery. I bet my occupational therapist would be incredibly proud. At one point in time (even recently) I would step up onto the stair and in my head think “ok, go!” but the message wasn’t making it to the leg. It’s kind of scary when your brain is disconnected from your limbs. I’m happy to see that the message is finally getting there (by Harry Potter owl, naturally).
I have seen my personal trainer twice now and have worked out a handful of times on my own. When we last met and debriefed he told me that he was really blown away by my progress and ability considering the extensive nature of my surgery. He said that he has worked with many women after having C-sections that lack the type of abdominal strength that I have. He thinks that I have the endurance and strength for a single one hour session once per week instead of two half hours. Our goal is to workout together once per week and I am to work out two other days during the week. Eventually we will work up to adding a 4th day where he recommended I do yoga (I miss yoga and love this idea).
I am so happy that I made this investment in myself. It has given me so much more energy and more long and short term goals to work toward. Goal setting is so critical when you have cancer. The smallest of goals can be the most satisfying. A day after my hysterectomy my goal was to take three steps with the help of two nurses, now I’m walking up and down stairs, working out with a personal trainer and on my way to running again eventually. Amazing.
In related news:
In the last few days I have noticed that my ankles are a little swollen. The right slightly more than the left. Both have very small varicose veins forming (I’m too young for this, ugh). Pre-cancer I’d just elevate my feet and think “Whatever, it will work itself out”. Now I can’t help but to agonize over what could possibly be wrong with me. Is it an effect of chemo? Did I mess it up while working out? Are cancer cells causing this to happen? Are they going to have to amputate?! (ok, ok, maybe amputation is a BIT of an exaggeration but you get it). I’m going to show it to my nurse this week and see if I can get some more information. Praying that this is nothing.
In other news:
I’m beginning to lose my eye lashes and eyebrows. I’m not torn up about it but it’s super weird. I looked into fake eyelashes at CVS yesterday for weekend nights that I want to dress up a little. They sell all different varieties, many are far too over the top for my liking, so I haven’t yet decided on a pair that suits me. On top of that- they sell the glue seperately for a whopping 7 bucks! How’s that for some BS? Needless to say I left empty handed while my four remaining eyelashes hanging on for dear life.
In other, other news:
I would like to proudly acknowledge my college friend/former roommate Ashley (Das) Emmanuel for raising a whopping $1650 for St. Baldrick’s Day to benefit children with cancer. She is looking beautiful with her velvety bald head. Her husband Greg even upped the ante by offering to shave his beard in the style of the highest donator’s choice! I love these two and am honored to know them.
That’s all for now, enjoy the rest of your weekend (especially those lucky bastards in Massachusetts that have tomorrow off for Patriots Day. Remind me to rub this in your faces when I have Victory Day off in August and the rest of you non-rhode islanders have to work).
The other night my brother’s friend Tom (currently kicking Leukemia’s ass with style and grace while helping others along the way- http://goteamtom.org/) sent me a link to a post written by a 28 year old Leukemia survivor:
I sat with this piece and read it twice initially and cried both times. I sobbed because it perfectly put my experience into words in a way that I have not been able to summarize myself. From changing relationships to the intense fear of facing my own mortality, this guy covered it all so simply and eloquently. I can’t tell you how many times someone has said: “I can’t even imagine what this is like for you”. If you have ever wondered, please take a minute to read this post.
Here is a little taste-
“You will begin to hear your voice changing. That voice is who you are becoming in the face of mortality. Listen to that voice. It will be the purest, most authentic version of you that you have ever known. Bring that person into the world- strengths and vulnerabilities and everything between. Be that person forever. “-Jeff Tomczek
(^I had to share this little quote said over dinner last night with an old college friend because it made me laugh. Andy- we have bickered like siblings for the past six years and I am pleased to see that nothing has changed.)
Much like my last round of chemo, the past week had some ups and downs. Luckily said “downs” did not include any hospitalizations or deaths this time (I need to keep the Halmark company and pro-flowers humble every few weeks). I was feeling just fine through most of last weekend which was fortunate because I had a special visitor on Saturday night from NYC. We had a blast together. Saturday was gorgeous and we were able to enjoy a relaxing day of nails, park, and lots of culinary adventures. I was excited to actually have an appetite because I was able to eat this heavenly little piece of art:
My glorious weekend was short lived when, like clockwork, the “day 3” symptoms hit me like a Mack truck. I took Jaclyn to Amtrak early Sunday morning then slept all day. I never sleep into the afternoon but my body basically powered down for the day. I know that I have said this before but it pretty much feels like having the worst hangover without any of the fun of drinking the night before (not fair). BUT- my friend Wilson reminded me of this the other day: “it’s good to know that all you’ve been through isn’t in vain”. Truth.
On Monday I showed up for work a hot mess. Chemo day 4 was even worse than day 3. I was sweating, unfocused, nauseated, achey, and probably generally unpleasant to be around. My poor students- I don’t even think that I could form english words half the time. I only made it an hour and a half into the day before I was sent home to recuperate (for once I didn’t fight it). The whole drive home I was disappointed in myself for not even making it through the morning. I finally stopped and had to give myself an attitude adjustment (a mental bitch slap, if you will). I reminded myself that I have CANCER (I’m actually sure that I said “RELAX! You have cancer you idiot!” aloud, in my car, to myself…). I can’t be so hard on myself. I guess the Santoro’s Cleaners work ethic has never left me. You go home when you’re dead- (Lisa/Stack/Jamie/Sam…you know what I’m talking about). Long story short (too late) I went home and slept for many, many, many hours. Tuesday I went back to work with energy. Good to go!
Last night I started personal training with my new trainer Matt at Boston Sports Clubs. We had a great session and I was able to do more with my bum leg than I expected! Matt is incredibly knowledgeable and encouraging. I’m psyched to do this. I’m getting closer and closer to “normalcy”. I don’t think I’ll ever feel totally normal though- let’s just call it schnormalcy.
After PT I had the distinct pleasure of having a RWU reunion with two old friends, Andy and Adam. I’m pretty sure I wanted to choke out both of these gentlemen on a daily basis during our time working for admissions in college. They are like the brothers that I never asked for but got stuck with. Despite that through the years they have oddly remained very close to my heart. Adam was actually my first advisee ever when I did my first advising internship in 2009. In many respects, he served as a catalyst for my career. When he first came to me truth be told (and he knows this) he was a know-it-all, little schmuck. Four years later I am so proud of all that he has accomplished and how much he has grown. Being able to see this growth is a reminder why I love this field so much. Overall it was a nice visit and I left with my heart feeling very full. I need to kick cancer simply so I can continue to see these advisee before and after’s year after year!
Anyway- Sorry that this post is all over the place. I’m choosing to blame it on “chemo-brain”.
Chemo went well today and I’ve even had a little energy to clean up my apartment and grocery shop: Jess-1, Chemo-0. Only one more round to go! Keep praying for “21” and I should finish chemo by April 26th!!!
Thank you for everyone’s continued thoughts, prayers, and well wishes! I am the luckiest girl to be surrounded such genuinely good people.
The Cancer Chronicles 