Tag Archives: Support

New to Me…

When you are little, everything is a new experience. The first time you (insert pretty much any activity here). The difference is that the majority of people don’t necessarily remember those new experiences if they occurred within their first three and half years. The inability to remember things prior to around this age is called childhood amnesia by scientists, and thought to be the result of the absence of language skills. According to studies, females tend to have an easier time recollecting earlier memories than their male counterparts. The gender difference often lies in communication skills that develop early on, females tend to tell elaborate stories about their days beginning early on allowing them to make connections to their memories. I know I was definitely one of those girls that would recap every part of the day at the dinner table and can generally remember the details of my younger years. My ‘sort of’ brother/ oldest friend always states that he has virtually no recollection of our childhood years. So maybe there is some accuracy to the study. Regardless, right now everything seems new to me. After all if we go by age of my stem cells they are only fourteen days old, which is definitely new to me.

This stem cell transplant experience has been an interesting one and not at all as I expected. I’m not really sure what I thought it would be like, but I anticipated a more caught somewhere between ‘hope and hell’ kind of thing. So much of what I read, heard from my support group or came as a disclaimer from my doctors made this experience sound overall horrific. Now I’m not saying it has been easy in any way but it has not been horrific either. I managed to keep myself occupied and make some new friends along the way. I have also begun an exercise routine in hopes of maintaining strength and shifting my new stem cells to a healthier lifestyle. I started off walking a mile and have since gone to two miles out in the pod. Walking in the pod isn’t exactly scenic so I requested a stationary bike to add to my new routine. I met with PT and was off and peddling. This new level of dedication and consistency is certainly new to me. And I like it, also new. It has been a long time since I can sincerely say that I enjoyed exercise, not since Steph and I took up running one Fall several years ago.

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This new experience has also led me down a path of relaxation, albeit forced, that I am unaccustomed to. I tend to be a bit of a workaholic and have primarily focused on that over the past twelve years, so this forced break is both new and a little scary for me. In the last three weeks I have watched countless hours of Home and Garden TV, movies, a whole Netflix season, read a whole book in a day, scrapbooked and colored. I have to say though that I don not find coloring all that relaxing despite the hype it has gotten over the years. I find that I get stressed out if my picture isn’t perfect. So I may need to practice “letting it go” and “coloring outside the lines”.  I think finding new hobbies and ways to focus my attention on other things may be rejuvenating and actually help me reenergize for work when I can return next year. I may also need to get accustomed to napping, because on days like today I’m exhausted.

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All of the medical ‘stuff’ is new to me as well. It may feel like I’ve been working on my med degree for the last three years, but this experience has led to many firsts. I needed platelets for the first time and they look like orange juice. Creepy and interesting. Apparently they can also have a green tinge if a female on birth control donated them. Again creepy and interesting. I have learned all about cell growth and their functions. My waiting game has officially ended. My cells began engrafting yesterday and by today I had 110 neutrophils or new cells created by my new stem cells that will contribute to my new immune system. I have to say that I am very excited about it. I’m still treading lightly and am cautiously optimistic because there could be snags related to gvhd or graft versus host disease along the way, but for now so far so good. I’m hoping to be home sometime next week as a result of my new cell growth. But before I get to leave, I have to undergo a series of classes with the PAs, nurses, and nutritionist to learn how to get back to life as an allo transplant patient. In many ways I’m excited about this new phase and am truly blessed to have the opportunity to get a chance to start new and the support of so many to help along the way! Only this time I’ll be able to remember all of these new things, even in the next three and half years of my infant stem cell life.

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So it’s been awhile…

I recently came to the realization that I write to process my life. And not that my life has significantly changed since October, but I guess it kind of has. I’m sure that’s true for everyone, that the only constant in life is change. Now don’t get me wrong many things have stayed the same. Josh is still around (my steroid crazies didn’t send him running for the hills or convince me to get ‘rid’ of him in one way or another), my parents continue to be my biggest cheerleaders (a terrifying description of my dad), Jax still persistently shoves a ball in my direction for the sole purpose of play, and Z still likes to see my face monthly. In all sincerity, he really has been my longest relationship (since March of 2014). My visits with him however, are less about my cancer and more about this obnoxious autoimmune lung disease and steroid side effects.

So as a quick update, since it has been awhile, I am the fortunate benefactor of a weird side effect of my clinical trial. I have reoccurring pneumonitis. Left untreated it can function a little like cystic fibrosis, creating scar tissue in your lungs and sucking the air out of your lungs. Luckily for me, mine has never left any permanent damage thanks to steroids and now a Cellcept (a med usually given to organ transplant patients to prevent rejections). In February, I could barely walk 10 feet without telling people I had just run the Boston marathon, because that’s how I imagine it would have felt. So after a pesky bronchoscopy and new course of steroids, my lungs returned to normal. It was also at this time, they added Cellcept and hoped it would eventually replace the Prednisone (thank God). May was when I could finally taper off the steroids (which I had been on off and on for a little over a year). They had already wreaked havoc on my mind and body. I gained 47 pounds and was pretty sure I was going crazy. In June, there was some concern that the Cellcept was not quite as effective as the steroids and that maybe they needed to be reintroduced. I was not about to let that happen and for the first time in two and half years, I lost it in the doctor’s office. My poor pulminologist. I told him I couldn’t, more importantly, wouldn’t go back on steroids. That I would take my chances with slightly decreased lung function as long as I could get back to my life. And that’s where I am now, in a cycle of change to get back to my life.

Ok. Great. Except the life I had before Hodge is not the life I have now. I never realized that even when you no longer have cancer, cancer still has you. It is indefinitely a part of your past, present and future. Someone in my support group asked what was the hardest thing about your experience and while most people think it’s the treatments, it isn’t for most of us. I think the hardest part for me was watching everyone else move on with their lives (getting married, having babies, buying houses, taking trips) all while I felt like I was standing still, stuck in a rut with Hodge. And it didn’t matter when I had good days, great days even, they somehow felt less than. And even now that I’ve been in remission for about a year, the reminders are there. I think in some ways it’s like being in an abusive relationship. When it’s over you have to start over and figure out who you are now. Good thing for me I like change and the notion that you can always reinvent yourself. So that’s where I am…in the process of figuring out what makes up the best version of me. So I’ll keep the constants, accept the changes, and pursue new things to figure it all out.

So rather than being pretty, witty and cancerous, I’m going to try for pretty, witty and happy and healthy in my own body.

 

 

It Takes a Village…

I have heard the expression “it takes a village to raise a child” countless times, probably more so as a result of my occupation. It is true in the sense that as a teacher you partake in the raising of children and often wear many ‘hats’ in order to do so. But aside from acknowledging that sentiment, I never really gave it much thought until recently. The second I was diagnosed with cancer, a village magically appeared – rising from the abyss and settling in around me (or something to that effect). This village consists of my parents, Jax (my sweet Golden Retriever), family, friends, next door neighbors, colleagues, doctors, nurses, Hillcresters (people at the cancer center), former and current students, and members of my community.

If one were to conduct an anthropological study, each villager would assume a unique role in the overall well being of the ‘child’ – in this case me, the cancer patient. Anthropologists study kinship which is the relationship between people based on family, marriage, or other cultural arrangements. These studies conclude that in many cultures children are not raised by their parents alone, but that the community in which the family resides also takes some responsibility for that child’s upbringing. However in the modern era, the extended family tradition was replaced by the nuclear family model, leaving parents the sole responsibility for their dependent children. Illness changes that regardless of the age of the ailing party. People graciously rally and offer support for the sick individual as well as the frantic immediate family and thus a village is born. 

Admittedly, this village model has taken some getting used to for me. As a very independent young adult (early thirties), it has been trying at times to accept the help and sometimes watchful eye of my parents. I have a very close relationship with both of my parents and have always spent a considerable amount of time with them. My mom and I sort of have that Lorelei and Rory Gilmore Girls thing happening. For example when I moved off on my own, we created a Friday night dinner and a movie night to ensure that we always had one night a week to really catch up. And my dad and I are very similar so we sometimes butt heads, but are still very close. As an only child, I have always had the full attention of my parents and have always been their sole focus. I think in some ways that may have been the result of my shocking entry into the world, two months early, causing them to fear for my life almost immediately. They had to be watchful over the incubator for nearly two months after I was born. My mom claims that she bargained with God to let me live and she would never ask for anything again. And well it worked with the help of modern medicine and apparently it will have to work again as I fight my Hodgkin’s Lymphoma nearly 32 years later on the dot (my first treatment was the week of my birthday).  Since my treatment started my parents have been there every step of the way- doctors’ appointments, treatments, etc. My mom stays with me during treatment, for me and for her own peace of mind. Once we got into the routine of the regularly scheduled programming it was easy, but now with my new refractory status, intense treatment and soon to be followed transplant, everything seems magnified. My mom has to move in with me for the 100 days and while I love being with her I also love my independence. And I think as a young adult this is the hardest part. You have to accept the fact that to your parents you are a child, their child. So we all try to compromise some and it works. After all, they are the center and foundation of my village.

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My village is also made up of my family, both blood related and life related. My grandparents, aunt, uncle, and cousin have been incredibly supportive. In some ways, this has been a blessing because we all make more of a concentrated effort to see one another. I now have monthly luncheons with my aunt and cousin, when before it seemed we only got together on birthdays or holidays. My second mom, Nancy, has also been a Godsend throughout this. She is a constant support for both myself and my mom. She too has been with me since day one, she and my mom have been best friends for over 50 years, so she is most definitely part of my family and so is her son. He is the closest thing to a brother that I’ll ever have and I am his daughter’s godmother, an honor I cannot even begin to explain. I just love that little girl to pieces. I love spending time with my ‘brother’ and his amazing wife. This experience has led us to also spend more time together. In many ways having cancer has reset my priorities, I work less and spend more time with my family and friends. I have to admit that I think I enjoy my life now more than I ever have.

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My best friend Steph has also been an instrumental member of my village, she has been my support system through all of it. I consider her family as well. When I was diagnosed, she ran the gamut of emotions that I did. After her google search on what to do when your best friend has cancer, she vowed never to treat me differently or force me to take walks in nature (which the website) and everyone else suggested. She stayed true to her word. We do what we always have and have tons of fun in the process. Every once in awhile sh” gets real when we have heavy conversations about the reality of all of this, but it’s nice to have that person to go to with the heavy stuff too. In some ways, I feel worse for her because everyone we knows asks her how I am or what I need. Takes some of the pressure off of me, but she ends up having to field a lot of questions and navigate the offerings of support. I greatly appreciate her taking one for the team (or our really small gang of two).

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My other friends have been equally amazing in a variety of ways. Tammy and I keep our monthly get togethers, which we started one New Years several years ago. She is also my fashion consultant. My friend Jaime, both friend and colleague have fabulous dinner dates. Matt sporadically pops in to harass me as he has done since I was 13. My high school and college friends have been awesome and offer unconditional support anytime and all the time. We go to painting parties, have kitchen table talks, and catch up for old time sake. Some of my high school friends have taken my diagnosis harder than others because back in September we lost one of our closest friends (he was more like an overprotective brother to me) to Stage 4 Melanoma. That unbearable loss led some of us to try harder to reconnect and stay connected and with my diagnosis too, it feels even more imperative that we do so. I have to admit that having all of these people in my corner has helped me stay positive throughout. 

 

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My colleagues and administration at school have been wonderful in supporting me in whatever I need. I couldn’t ask for a better school community to be a part of. I am fortunate in so many ways. You also realize the impact you have had on your students over the years. Some of my former students check in frequently over coffee, dinner, or skype (now that they are all in college) and my current students ask how I’m doing when they see me. These relationships have also been a motivating force behind staying positive. 

The part of the village that one never expects is your team of doctors and nurses and other personnel. Prior to this experience, I liked my doctors but not enough to commit to seeing them weekly. Z changed all that. As my oncologist, he has to see me and treat me, but he is not forced to invest in me personally. But he is invested and he does this with all of his patients. He takes an interest in truly getting to know you. He even reads this blog and comments on my fashion sense and just randomly checks in. I knew he was part of my village without a doubt when I saw him in attendance at a memorial race for the friend of mine that passed away in September. All I can say is he really shows up and that is so important! He isn’t the only one, the oncology and IV nurses I have met are equally as incredible. In many ways they have become my actual friends. Some on facebook, some via texting and phone calls, others just when I see them. They know about your life and you about theirs. They cheer when your blood counts are good and they are just as disappointed when things go awry. Julie may have been more upset about my refractory status and stem cell plan than I was. I can’t even tell you how much that means to me that I feel so comfortable with all of them and know that having them in my village gets me through this. And the doormen who claim I make their day with my smile also make mine. It’s the little things. 

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My community overall has offered support and words of encouragement that are appreciated more than they know! 

And lastly one of the most important members of my village is my Golden, Jax. I got Jax three years ago as a way to curb my workaholic mentality. He is my first dog and my first real commitment. For the most part it is just he and I in the house, so we have to take care of each other. I admittedly was more worried when I thought Jax had a cancerous tumor recently than I was about my own cancer status. Luckily his was a rare benign tumor, thankfully. He is like my child and to my parents a grandchild. So I can’t even express how thankful I was when the stem cell transplant coordinator told me I could keep him in the house during my 100 days of house arrest. He may not be the type of dog that picks up on the fact that I am sick, but in many ways his energy makes me better. So I’m glad to have him running around in my village. 

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From anthropological stand point, my village is pretty impressive and has certainly helped me get this far!! So thank you villagers! 

 

Front of the Class: Q and A

Being a high school teacher is a lot like being in high school in general. When you make the slightest change in appearance or attitude, the faculty speculates and the students comment. These little known facts are why I avoided telling either until I had all the details. So I adorned pretty much every outfit with a scarf to hide the very visible three inch lymph node biopsy scar that was just to the right of the center of my throat. I didn’t think telling my students I was in a gang fight was quite appropriate, so I covered it up for the time being. Once I finally had some definitives like when chemo was going to begin, the duration of my treatment, and potential issues; I felt as though I could finally tell my students why all the scarves and my suddenly trendy chic new short hair cut.

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I spoke with my administrative team about how to best approach this difficult subject with my students ranging from eighth to twelfth grade. I was most concerned with my seniors because they lost a dear friend to a form of brain cancer (Gliomatosis Cerebri) the previous winter. She had fought long and hard for the majority of their high school career and the word cancer alone dredged up awful memories and raw emotions for her closest friends, all of which presently sat in my Advanced Placement European History class. I knew I needed to tell them first, so the news would not leak out to them before they heard it from me. Administration agreed that this particular group needed to be the first ones told and they thought it would be better if the conversation also included the guidance counselor – Jaime, who happens to be one of my dear friends. I spoke with her as well as the adjustment counselor as to how to proceed, but in the end I chose to to tell them the way I would tell them anything- straight forward and direct. I am not one for sugar coating anything and this bombshell would be no different. Once I told them my other classes would be easy, after all my other classes hadn’t developed a relationship with me over the past four years.

I sat down at the back table, where we always sit, and waited for everyone to arrive. They exchanged confused looks because normally Jaime was not part of class. I explained that I needed to tell them something rather important and she was here to support both me and them. They were aware of my absences as of late and were smart enough to connect the dots of how the remainder of this conversation was going to go. I explained to them that I was diagnosed with Hodgkins Lymphoma a few weeks ago and would need to undergo chemotherapy treatments that may have an impact on my physical, emotional, and mental state. I joked that I didn’t want them to think I had a Britney Spears moment and just shaved my head for no reason or that I decided to try some new fad diet, etc. I wanted to be as honest and as positive with them as possible. I was very optimistic about my situation and was determined not to let my cancer dictate my life. I explained that I fully intended to continue working and that I would still be their teacher. Nothing would change other than that I would have to miss class on Wednesday every other week and potentially some other days. They looked at each other with wide eyes, the ones I expected to cry -cried, one of the boys acted distracted and the other was not impressed by my humor; but all in all it went very well. They didn’t ask any specific questions, so I assumed they were all set and began class as usual. Apparently they waited until next period to flood guidance and talk about it with Jaime.

After I told my seniors, I felt much more comfortable giving a similar spiel to my eighth and ninth graders. I opened the floor for questions. I wanted all of my students to know that they could ask anything they wanted pertaining to my cancer and how this may impact them. I saw this as an opportunity to be completely transparent and to show them that how you react to the bad things that happen in your life makes all the difference. It was one of those rare teachable moments, the kind you always hear about on television but rarely have in the actual classroom – at least on this level anyhow. I refused to let my cancer diagnosis disrupt my life or my otherwise cheerful demeanor. Some asked how I could possibly be so optimistic. Others asked specifics about Hodgkins and the treatment. They asked some really good questions, all of which I tried my best to answer for them.

I have to admit the two days that it took to tell all of my classes were the hardest days of my teaching career. It was like being in the hot seat at the front of the room. I was unsure of their reactions and they were equally as unsure of what I intended to tell them. I also found it difficult because I have spent the duration of my ten year career keeping the details of my life private and for the first time that was not possible. It was as if my teacher self collided into my ‘real’ self in front of an audience. And once it was over, it was a huge relief. I could stop hiding behind my scarves for a little while at least until my hair fell out.

On a side note for those of you wondering, my news had absolutely no impact on their behavior or their expectations. They treated me no differently than prior to my cancer confession. And I am so grateful for it!