Cancer Purgatory: Not Out of the Woods Quite Yet

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):

terminalcancer

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. 

daffodils

“Geez, you get a LITTLE cancer and suddenly it’s allllll about you” -Andy

(^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:

7938_869727731841_2051571275_n580228_869773569981_582613333_n

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.

Have a great weekend supporters!

Things are shaping up for old Liz Lemon

To continue my streak of positive energy, I have some great news to share! When I arrived at chemo this morning, my kickass chemo nurse Sheila couldn’t contain herself. Before I walked into the room she told me that she had just checked my tumor marker and my CA125 levels had come down from 60 to 34!!!! That’s major. Especially considering that I need to get  below 21 and have two full cycles left. I’m making giant steps in the right direction. This is a huge relief considering last time it only went down from 64 to 60. Even though it went down I was disappointed and worried that this great new treatment wasn’t working. All of the nasty side effects are worth this type of news. In other news, I gained 5 lbs wooo! I also start with my trainer next week.

all good things 🙂

“Sorry for eating all of your cancer snacks” -Meesh

I had the best weekend. I adore my chemo off-week. It makes me feel like a “normal” human being again (for a few days at least). As the weeks go on as much as the effects of chemo are cumulative and become more intense with each cycle, I am still somehow energized during my off weeks. It’s better to just roll with it and not question where this magical energy is coming from. I took it as a golden opportunity to have some fun. One of my best friends that I grew up with visited from NYC (Michelle to my right). Since one of my other best friends (Stacey to my left) now lives in Little Rhodey, we were able to have a Torrington reunion.

bests funny

And of course spend time with my Providence home girls…(clearly I need a new pose)

photo-27 mejacque

On Friday night we went out and met up with the rest of my “providence family” and a few other wonderful friends and headed downtown to the bar. There was a live band and my leg has improved enough that I was finally able to dance without fear of tipping over. Per usual I was the most hydrated girl at the bar. Despite not being able to drink, I was still able to have a great time. It wasn’t too crowded, no one got too drunk, everyone was having a great time. I loved it.

Small nice moment in the RiRa bathroom: I was talking to Michelle and Stack about my wig and a girl waiting in line at the bathroom said “I was just about to comment on what nice hair you have! I would have never known that was a wig”. I guess my wig stylist was right- NAILED IT.

Yesterday I continued the T-town reunion and overall we had some good food and I pretty much laughed all day. This visit was good for the soul. OH and I had an unexpected huge appetite. I basically cleaned my plate at every meal (So Jeannette- if you’re reading this, I hope you’re proud since second to my mother you are most concerned about plumping me up).

Anyway- just thought I’d highlight a few good days in the midst of this cancer chaos.

Gearing up for round FIVE (home stretch!) of chemo this coming week. Cross your fingers for some favorable blood test results. I will accept any and all prayers to any deity! If you need to pray to a golden calf in order to get my CA125 levels below 21, do it (but don’t tell my Rabbi).

I hope everyone had a lovely weekend. Thank you for the continued support!

Chemo Round 4: 2 treatments down, 1 to go

I have so far survived that past two days of chemo without nausea or vomiting (knock on wood). I have had IV nausea meds that will stay in my system for three days and they have allowed me to take a lovely little drug called Phenergan which worked really well to curb my nausea when I was in the hospital. Yesterday I pretty much slept all day through treatment and again when I got home but because of the steroids I was up all night. Luckily the steroids really make you feel invigorated (a nicer way of saying they turn you into an insomniac). As a result my room is now clean and organized. Chemo silver linings?

Yesterday I shared a room with a woman with breast cancer. The Benedryl knocked us both out for it generally made for a quiet chemo experience. The funniest part of the day was when it was time to leave. I didn’t have a ride home so the nurse was kind enough to call me a cab. For those of you familiar with Providence cabs you will chuckle to know that she called Big Daddy Taxi. Yup, the one that takes you to the Cadillac Lounge and to the Foxy Lady (Free admission to both if you use Big Daddy!). You better believe that the cab had a pegasus spray painted on the side of it when it rolled up to the infusion center. For a shady cab company, I must say that they are always prompt and friendly! Gotta love strip club owned cabs. I made it home safe for 7 bucks. I’ll take it.

Today was much more comfortable.  My friend Jen was kind enough to stay with me today (owner of the Bee Hive Cafe in Bristol. Eat there, it’s life changing). She was also kind enough to pick up Olga’s for lunch. It was most definitely a huge incentive to eat despite not having a big appetite these days. YUM.

photo-25 My chemo nurse was moving this week so I had a lovely nurse named Rosa. It worked out great because she was Jen’s chemo nurse during her battle with breast cancer. Rosa was very sweet and thrilled to see Jen. We even scored a great infusion room. I had a room to myself that not only had a window but a bed too!!! The chemo recliners are horrendous. Not to sound ungrateful but when you have to sit in one place for 6 hours to get poison pumped into you, you at least want to be comfortable. The bed was a pleasant surprise.

This weekend I’ll be focusing on no nausea, continued strength, and CA125 levels dropping. Remember 21 is the magic number. Pray for 21. As my friend Katie reminded me last night: “We’re not 21 but the sooner we are, the sooner the fun will begin” -Brand New. I thought at age 25 that I outgrew those lyrics but in this case- still relevant! Throwback Brand New for the win.

I’m back home now and looking forward to a low key, lazy weekend so that I can come back to work Monday full force.

Love & Gratitude ❤

“You’re doing a good job at having cancer” -Big Brother

Some days Most days, I feel like my life is spinning out of control and I would like nothing more than to hide under the covers until its all over. Today is not one of those days. Today I feel strong, optimistic, and oh so grateful. So yes Adam, I agree that I am doing a DAMN good job. I mean look at me- rocking the shit out of that wig for my beautiful roomie’s 25th birthday this past weekend. Not bad for a “make a wish kid” (as one of my best friends so eloquently puts it).

150424_859634818121_147420498_n

Today I had my scheduled pre-chemo exam with Dr. Robison. I am happy to report that she gave me nothing but optimistic news. She examined my abdomen and told me that she heard good bowel sounds and that it looked soft and normal. I haven’t had any abdominal pain since I left the hospital so it looks like the obstruction has resolved itself for the time being. I also asked her about my chemo schedule. If my CA125 levels continue to go down like they have been, normalize, and don’t start to creep back up there shouldn’t be any reason that we need to continue chemo beyond the scheduled 6 cycles. The goal is to get my CA125 levels below 21. Right now I’m down to 64 from 1600- woo-hoo! If I am able to stay on track with chemo as planned, I will finish chemo the last week of April. AMAZING. In terms of aftercare there are a few options but the one that Dr. Robison is leaning toward is a monthly injection that would help prevent a reoccurrence. The plan would be to have this treatment for the next year. This means that my abdominal port would come out at the end of chemo but my other port would need to stay in for a year. A small price to pay to be cancer free.

Due to the unpredictability of this disease I have learned that I can’t count on anything so I have to be prepared for everything. So much can happen in the next few months but after talking to my oncologist about where we are headed, I am truly starting to see the light at the end of the chemo tunnel. I still have three more, achey, pukey, cranky, miserable rounds but in a few days I will be more than halfway done! (At least it gives me an excuse to curl up on the couch with my amazing roommate and watch more Lifetime movies than we’re both willing to admit)

I don’t know how I would make it this far without the support and faith of everyone in my life right now (especially the Kaplan Clan this week 😉 You know what’s up). Cancer has taken away my ovaries, many organs, the ability to bear children, and my hair. Cancer has not and will never be able to take away the love and warmth that has surrounded me by family, friends, co-workers, acquaintances, and complete strangers. If I don’t acknowledge you in this particular post please know that you are NOT forgotten. The gifts, cards, messages and loving gestures will stay with me eternally.

I feel compelled to highlight my colleagues this time around because they have been so essential in this recovery process. I feel normal at work. I come alive at work. I’m pretty sure I smile more and worry less between the hours of 8:30 and 4:30 Monday through Friday. I am incredibly lucky to work where I do simply because I work amongst such thoughtful, understanding and inspiring people.This is a group that I have only known since July of this year yet without a second thought they have met with my students, run my reports, covered my presentations, fed me, made me laugh, hugged me when I needed to cry, visited me in the hospital, driven me to work, driven me to support groups, and in return I have driven them crazy 🙂 kidding! I think? I hope? Right guys? Guys…?

(I hope I am not embarrassing my office by posting this picture. Steph made it the Advising Office cover photo on facebook so blame her! Sidenote- The fine people of Academic Records, The Registrar and Study Abroad are not pictured but equally loved and adored)
bryant

Sorry for all of the rambling (not actually sorry) but I want to share one more story while I continue my gratitude kick:

Since my diagnosis I feel like I have connected with people on a more intimate level. For example today I went back to my gym to reactivate my membership and inquire about personal training (It’s time to get jacked!!! Ok maybe not but some light exercise couldn’t kill me). I explained to the BSC staff member why I had to freeze my membership and that lead to me to spilling my guts about whole saga. It must have been fate that brought me to my gym on this particular night, at this particular time, to speak with THIS particular person because we instantly connected. It turns out that this girl has been through a series of unimaginable life challenges herself. Even though our experiences were very different from one another, it was as if our struggles granted us permission to open up and have a very human moment in a very unlikely setting.

The next time you open a newspaper and read about a shooting or international conflict remember that in the midst of such chaos this is still a kind and gentle world. I know this because I wouldn’t have come so far in this disease had I not been on the receiving end of infinite love and compassion on a daily basis.