This past Friday I had an appointment with a genetic counselor at W&I Hospital at the recommendation of my oncologist and the insistence of my mother. A genetic counselor’s job is essentially to help identify genetic disorders and provide guidance to families based on the presence of a genetic disorder.
In my case, we are looking for the presence of the BRCA1 and BRCA2 gene mutations. If I test positive the likelihood of developing other types of cancers are increased. My understanding is that if you are diagnosed with ovarian cancer and carry a harmful gene mutation the chances of developing breast cancer is much higher, about 87%. Carrying the gene has implications for both myself and members of my family.
If I were to test positive, they would then encourage one of my parents to test. Let’s say for example that my mom then tested and tested negative. We would then know that the gene mutation came from my dad. We would then encourage my brother to test for the gene as it could potentially negatively impact him or his future children (particularly if he were to have a daughter). BRCA genes do not skip generations. Although you may carry the gene it does not mean that you will develop cancer. It just leaves you at a higher risk of developing cancer.
When speaking with the genetic counselor my parents and I went through our entire family history to the best of our knowledge. We focused on grandparents, aunts, uncles, cousins etc. We were able to identify two types of cancers on Dad’s side of the family. Only one of the two was a women’s cancer and neither was Ovarian. We are not very close with Dad’s family so I honestly had no idea about any of this history. My parents were kind enough to call a distant relative that they have been estranged from for information. Luckily, this relative was very warm and forthcoming with information.
Even with the small presence of cancer on Dad’s side of the family there were no established patterns. There is also no evidence of breast cancer on either side which is promising. Based on our family history, the genetic counselor is inclined to believe that I do not carry the gene and the cause is not genetic. I did a quick saliva test to be sure. We will know for sure once the test results come back in about five weeks.
I feel very indifferent about the test results. On one hand if I carry the gene that will help to explain the mystery of why I developed cancer. On the other hand it could potentially have implications for my family members. If I do not carry the gene there are other genetic tests that we can do but some of what they are testing for is relatively new in medical science and they do not have enough samples or background to draw conclusions about the “why”. I’m not necessarily anxious about the results. I am happy to test to ensure that we can take preventative measures for my family’s wellbeing.
Bottom line, at this point I have little interest in finding out why I got sick. I knew that I was such a medical enigma that I don’t think I ever really truly worried that much because it was made out to be so rare and complicated. If I test positive for BRCA we will take it form there. If I test negative I am going to keep moving along with my new happy healthy second chance at life.
Rohan is a friend of mine from Australia that was dealt a difficult hand when he was diagnosed with Hodgkins Lymphoma at the age of 24. He underwent aggressive chemo treatment for an inoperable tumor the size of a grapefruit in his chest.
In the present he is engaged to the love of his life and making his dreams a reality by performing as often as possible. His musical ability is turning heads as he also performed at the World Championships of Performing Arts in Hollywood, CA. When I lived in Australia, he always talked about his dream to move to America and perform. It is exciting to watch his dreams become reality over time.
It is incredible to see how far he has come since his diagnosis. He was certainly a role model for my attitude when I was diagnosed with cancer a little over a year later. Watching Rohan go through his cancer experience with such a positive attitude and come out the other end helped me to believe that I could not only be okay, but flourish. Cancer was a mere speed bump for Rohan and if anything, has only encouraged him more to pursue his dreams with passion, sincerity, and optimism. Let this be a lesson for all of us.
As they say in Aus, good on ‘ya Rohan. I am HEAPS proud!
For those who have been following my ramblings over the past few months you know that once I returned to Providence I was committed to getting back to my regular old self as much as possible. At that time I had lost a significant amount of weight. My forced sedentary lifestyle also significantly reduced my muscle mass. To help myself along despite the fatigue (and a ton of vomiting) I forced myself back into the gym. I teamed up with Matt Weese, a master trainer at Boston Sports Clubs on the east side. He is a legitimate miracle worker. I know I have said this before but I am honestly in better shape now than I was BEFORE cancer.
Proof:
April 18, 2013: Still in chemotherapy
5 push-ups on my knees (Jac: please forgive me for referring to these as “girl push-ups”. Totally kidding)
July 2, 2013: Aftercare
30 standard push-ups
My intention here is not to show off (even though I feel totally badass since I could not even come close to doing this before). I’m about to get REAL cheesy but for me each pushup for me symbolizes progress despite adversity. My body started to fail so I built it back up little by little. The payoff has been incredible.
I am fortunate to have found a trainer that has taught me so much and empowered me to exceed what I thought were my limitations. Forever grateful.
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).
(^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.
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.
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.
And of course spend time with my Providence home girls…(clearly I need a new pose)
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!
Hello wonderful readers/supporters/people who were trying to google “male pattern baldness” and accidentally found my blog…
It has been over a week since I have last written because my life has been in a bit of a whirlwind. As you know from my last post, my grandmother passed away. Last week was a difficult week for my family and myself but the funeral was small and beautiful. I wish we could have gotten together under more uplifting circumstances but I am still glad that I had an excuse to be together with my entire family. As always, my superhero big brother dropped everything and flew into RI so that we could drive together to CT. Thank goodness he did because as they say- when it rains, it pours. After picking him up at the airport and getting home at 1:30am the night before the funeral my body decided to say “Oh you’re tired and in mourning? Screw you Jess, here is every side effect of chemo about to hit you riiiiiight NOW.” I was literally awake from 1:30 am to 5am violently ill. I then slept from 5-5:45 am and at 6am we hit the road for CT. Adam, being the best big brother that ever existed, gassed up my car, bought me vitamin water and a granola bar, and drove us both to CT after flying all day the day before. (SIDE NOTE TO ADAM SULTAIRE: Feedback on my blog has shown me that you’re popular in the polls with women. They are loving you to the point of fan club status. If this blog gets popular enough we might be able to score a VH1 style reality dating show)
Anyway- I survived a long and emotional day, as did my wonderful family. We are one less in the physical world but stronger than ever.
Since the funeral I bounced right back into work and chemo. Here I am “happy as a clam” during one of many infusions. I look pretty alert- the benedryl must have not hit me yet:
Aside from some serious fatigue, the last treatment was fairly tolerable and nothing in comparison to the infusion the week before. I was actually feeling well enough to head down to Bristol, RI to attend a benefit for my dear friends the Cavallaro’s. Jen has been one of my biggest supports as she had cancer not too long ago. I am constantly in awe of her spirit and strength. She is a perfect example of someone that just takes what life dishes out and keeps on trucking. During the last blizzard her house burnt down- completely devastating for her family. Instantly her community came together and rallied behind the Cavallaro’s. A beautiful benefit was put together at Linden Place this past Sunday by three rockstars: Eli, Danna and Pam (with the help and donations of countless others!). The feeling of love and community in that room was undeniable. As always it is heartwarming to see people coming together through hard times:
Jen, Chip, and their family have been like family for so many people including myself. They deserve every bit of love and support that they have received in this difficult time. Per usual Jen has a great attitude and is taking this as an opportunity for growth and renewal. We should all take a page out of her book when it comes to having a the right attitude in the face of adversity. Jen, Chip, Davina, Hartley and Pippa…I think of you everyday.
I haven’t talked about my leg in while. I suppose that means that no news is good news. It has come quite a long way in 3 1/2 months and I have almost reached full motor function…ALMOST. I can do everything except for walk up and down stairs. I am somewhat able to pull my body weight up with my bad leg but it requires a bannister and a prayer. I should be able to walk up and down stairs regularly sooner rather than later. Hopefully I will be running 5k’s again in no time…which brings me to my next point- the gym!
Last night I met with my new trainer Matt at Boston Sports Clubs. I am getting really excited about working with him and regaining my strength back. What I really loved about our consultation was that he has taken every piece of my recent medical history into consideration and will not put me on the gym floor until he has spoken with my doctors, previous PT’s and OT’s and has a chemo schedule/other pertinent information in his hands. He gave me a list of questions to bring to my doctor when I see her on Monday, including: “how should Jessica cover her ports/most recent incisions to prevent a Staph infection?” I prefer someone that is cautious over a trainer that just jumps into our partnership head first without getting all of the facts. I think Matt will be a great addition to “Team Sultaire”.
Prior to meeting with Matt, getting ready to go to the gym and physically walking in the door was a pretty anxiety provoking experience. In fact, I almost popped an Ativan before I went because my heart was racing and my hands were shaking. Was it because I haven’t worked out in a while? No. Was it because gyms intimidate me? Nope. Why you ask? My bald little head. You would think by now I would be over the hair issue. Actually, up until yesterday I thought I was at peace with it. Evidently I am not fully over it.
I got dressed for the gym and found a workout top that covered my ports and scars well (phew). I wrapped my head in a scarf and just stared in the mirror. After months of hiding under my wig, I was in a situation where it was impractical to wear it and I had to leave the house without hair. I go bald constantly around my house and even to friends houses. In fact, my close friends John and Brian shaved my head recently and I didn’t have an ounce of stress over it. There is something about going into public in a head scarf that took me back to that moment where I feared the stigmatization of “cancer patient”. When I walked into the gym I had one of those movie-esque fantasy moments where everyone in the gym looks up and glares at me like I’m dead girl walking. My reality is that no one in that gym probably gave the fact that I was wearing a head scarf a second thought. Even though I can seperate my projections from reality, it didn’t make it any easier to do that for the first time in an arena where there are 1.) strangers who may make assumptions about me and 2.) strangers that I will see time and time again.
I better get used to it because I’m signing up for personal training twice a week. After grappling with how stupid this anxiety was overnight I decided that (in true Jessica Sultaire fashion) I can move beyond the anxiety if I can take control of it. So here it goes world: my bald fuzzy head-
I know that no one is REALLY looking at me and thinking that I look like dead girl walking (I prefer to think that I’m just living dangerously- sounds more badass). But anyway if I can expose my George Castanza head in a VERY public forum (granted a forum where I can’t see the people looking at me), I think I’ll be able to wear a scarf to the gym somewhat comfortably.
On a final note-
I had a great day at work. Met with several really amazing students. I’ll leave you with what one of my sophomores said to me today. It was heartwarming and reminded me why I love the work I do: “I know that you leaving to take care of your medical problems is wayyy more important than helping me map out my classes but I just want you to know that I’m really glad you’re back.”
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.
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.
The Cancer Chronicles 