Time Warped - December 15, 2013

It was the same crisp, clear beautiful October air… and it was just as sudden that I found myself helplessly resisting comparisons to October of 2011 but here I was again, almost exactly two years later in my doctor’s office with an enlarged lymph node. Always holding onto hope, I shared with her my recent activities – I had been feeling better in my recovery so I began gentle yoga classes and began trying to get in shape again by doing some floor exercises. Did I twist my neck while working out? Even after only two short years after the diagnosis of Lymphoma, I still didn’t want to think history was repeating but one thing after another this past October cruelly reminded me of that time – not just October and that beautiful autumn weather but other, seemingly crazy things mimicked that time.  My doctor running blood work and scheduling an ultrasound – well, of course, that’s routine and that makes sense but the results were similar – blood showed possible mild infection and then it was Columbus Day weekend and my doctor was away for the long weekend and her doctor on-call – the same doctor that filled in for her two years ago – was the one to deliver the news about my tests. That means nothing, I know. But when anyone has experienced any kind of traumatic life event whether it be a health issue for oneself or a loved one, losing someone, getting a divorce, whatever it may be, the dates, the season, the time of year stick with you for a bit – time lessens that but you can’t help but reflect back – “a year ago this time I was….” Marking that date, getting past it is a milestone – you feel if you can get past that, you are a bit closer to the removal of that bad memory, a bit closer to healing.

I have learned through my experience with Lymphoma and joining support pages and meeting others who have gone through this, that you can’t help but mark those dates or times. I haven’t blogged in far too long but I will say that I approached fall of 2013 with a great, positive attitude. I finally ditched my cane, I started those aforementioned yoga classes and it made me feel happy and joyful. I affirmed beginning the first day of fall that I was going to start to make changes in my life – physically, emotionally, spiritually – I even started a wellness/health log to track what I was doing. It consisted of writing down all my exercises I did that day – not much, mind you, my body still isn’t there but I’d walk around with my pedometer to make sure I walked AT LEAST a mile a day or that I did my stretches, PT exercises, etc. I would begin my day in prayer including reading Daily Word – a little magazine I’ve subscribed to for years that offers a theme/reading for the day with a quote from the Bible – I used to read that faithfully every day and slacked – even through the roughest times two years ago when you’d think I’d be reading that every day, I didn’t (though continued my subscription) so I made sure I’d start each day with prayer and that reading and I’d end each day with meditation and nighttime yoga. I felt happy inside and committed to this – and I’d log it all in to this journal – how I felt, what I did (including what I ate). Three weeks later this lump in my neck appeared.

Two years ago I had plans to see one of my favorite writers at the Boston Book Festival – I didn’t go because my neck was enlarged and I didn’t know why or if I had an infection so I missed it. Boston Book Festival 2013, that same writer, Chuck Klosterman returned – I didn’t go because of my neck…again. Two years ago, I bought tickets to see one of my favorite singers Amos Lee perform in Boston. I didn’t go because I didn’t think standing up all night in a crowded House of Blues with a potential infection was a smart idea (this is before the diagnoses). This year I saw that Amos Lee was returning to Boston and I didn’t bother getting tickets because I wasn’t sure – and good thing because by the time he played here, I was in the midst of round two of this flare-up. Two years ago I was about to begin a freelance assignment at an ad agency in Boston and I had to call my recruiter at the agency that placed it to tell her I couldn’t do it because I was admitted to the hospital with the blood clot. This fall, that very same recruiter called me to see if I wanted to take on my first off-site freelance assignment at an ad agency (just a few days filling in but I was excited and nervous to get back to working onsite somewhere – first time in two years). I took the assignment, happily worked two days, that weekend felt sick, day later my lymph nodes flared up even worse than the first flare-up Columbus Day weekend. All of these things mean nothing – it’s the fall, the weather is supposed to be this way; the Boston Book Festival is always in the autumn; Amos Lee tours here all the time; I had been looking for freelance work, etc., but all those things triggered in me where I was two years ago.

So it feels like a cruel mind game right now but I am determined not to allow this to fuel my anxiety. This time around the doctors are hyper aware of me and my puzzling health and they are taking everything seriously (not that they didn’t before but there is a different level of seriousness this time around) – they are still confused and right now after several doctor visits, a CT scan (including a separate CT scan for a small node that lit up in my groin my PET CT of August – that one came back fine), appointments with two different oncology surgeons, it has come down to that I have to have a surgical biopsy to get to the bottom of this. They watched, they waited, it was bad, seemed to be getting better, then got bad again and along with these lumps in my lymph nodes (including this prominent one), I haven’t been feeling well and my fatigue that I’ve had since two years ago has increased. It’s an unsettling feeling. I am trying to stay positive and strong but I am struggling because I am flashing back to two years ago and it feels like too much time between seeing medical professionals even though since October I’ve pretty much had at least one visit a week for either a test or a doctors appointment but between those visits, I feel confused and anxious – nighttime is the worst both mentally and physically. But where is my faith? It’s right there – I trust God, I pray about it, He keeps telling me in His own, and often unexpected, ways to stay faithful. Is it being tested – my faith, that is? I’m feeling very challenged – I know that much; but I also know that I learned two years ago that I was a lot stronger than I even knew. I think part of what is consuming me is the thought of putting my family through this nightmare again so my prayers are also that they won’t have to go through this again – I know myself, I know I’ll deal because I did before but why should they have to? With all my heart, I hope they won’t.

This is not my most eloquent blog post and I realize it’s long; I don’t even know who is reading it but I know my writing is long overdue and I needed to do this for me. I have many other blog topic ideas to write about besides this and I’m annoyed that this is still something that IS a topic but one day at a time…not a cliché, fact of life that DOES help – helped me before, it’s what I did to get through, what I have been doing since then, and what I will still do. The biopsy is next week, December 18. Whatever the results, I will approach the first day of winter like I did for the first day of fall - with new hopes, faith, and the desire to get on track… again.

Written Monday, April 22, 2013

A week ago today I awoke to a beautifully clear and cool spring day.

A week ago today, I headed into Boston to my hospital, Mass General Hospital, with my parents (who have become my partners in crime with all these medical visits the past year) for my 3:00 p.m. echocardiogram.

A week ago today was Patriot’s Day in Boston and the Boston Marathon – a happy, spring holiday and tradition.

A week ago today thousands of lives changed beginning at 2:50 p.m……

Who would have known when I entered those hospital doors that a mere two hours later, we would be leaving both swiftly and with stunned confusion amidst Boston Police, hospital security, television news crews. Escaping my city – my beloved Boston because we had no idea whether more explosions were to follow.

Out the same building that innocent victims to a senseless violence would then be entering.

Leaving a building that runners were now racing to help and offer blood to their own.

A week ago today thousands of people awoke to a beautifully clear and cool spring day to run a Marathon for which they had trained, dreamed, planned…

A week ago today thousands of people planned their day around celebrating a tradition, cheering on a family member or friend, enjoying a day off, waiting at a finish line….

A week ago today, anyone who needed their faith restored in humanity saw it even amongst the rubble of sick, twisted, violent minds because love and unselfishness and courage shone brightly through and beyond hate and acrid smoke.

A week ago today lives ended, hearts broke, sleepless nights began but also a week ago today people faced fear and shock and destruction with immense strength and grace.

So yes, a week ago today, a horrific event happened at the Boston Marathon, and though it’s very hard to wrap one’s head around it, I am emotionally overcome with the stories of bravery and of people who ran toward the danger to help others in need. No one knew if more explosions were to follow but that didn’t deter them from doing what they could; and this isn’t just about Bostonians – there were people from all over the world at this event. This was about humans helping humans. This was also about medical staff, first responders, police, firefighters, EMTs who have to push aside the shock and do what they’re trained to do. I am also incredibly affected by the generosity and care extended from people here in New England as well as across the United States and the world. Each day I’ve cried tears of shock and sadness or on the good side, tears from an overwhelming touched heart. And though the pain for multitudes is so deep that I wouldn’t dare try to stitch up a nicely woven conclusion with even the most exquisite of words, I need to believe that the events of a week ago today are going to somehow beget a light that will lead to overcoming. Overcoming the results of hatred with the light of selflessness and unconditional love.

Milestones - February 16, 2013

A year ago today I had my last chemo session – I didn’t know at the time that it was going to be my last because I was scheduled for one more and then was to have a stem cell transplant. But then when things toppled over a bit and the doctors and pathologists got confused by my pathology (see “The Original Blog” post dated July 24, 2012 for more on this), the sixth chemo was cancelled and the SCT put on hold. So I didn’t get to celebrate my last chemo, I didn’t get to say goodbye to my nurses there, and due to this questionable nature of my entire illness, those little milestones that help the mind and soul, I seem miss out on. When I see photos on the Lymphoma Club page and community that I’m a part of on Facebook as well as other cancer pages of people ringing their final chemo bell (I don’t think they had that at my cancer center but nonetheless…!) or holding signs or getting to celebrate that was the last chemo and now on to the next step, I wish I got to have that moment. Because they have been utterly confused by why my pathology presented the way it did, I haven’t heard the words, “you’re in remission” – another celebratory milestone. Maybe to most people that sounds strange or silly but when you are in a battle for your life, you NEED those milestones – you need to mark your progress and battle rounds. It really is a big deal. That’s why those dates are embedded in our brains. That’s why I’ll always remember the date I was admitted to the hospital, the date of my biopsy and hearing the diagnosis, the week of my first chemo, the date of my first PET scan, the date of my last chemo. And actually now due to a beautiful coincidence, I’ll remember the date my baby stem cells were collected at the hospital. I’ll never forget that date because that was the day my friends had a baby girl! I remember scrolling through Facebook on my phone that day in the hospital and seeing the joyful news. When I saw them write about her birthday this year on Facebook, it reminded me of that day. Okay, so it probably would be a cooler story if I DID have that stem cell transplant instead of that just being the day they were collected but that’s a big deal too – it’s a big, draining process (no pun intended!) and it marks the beginning of a procedure that can save your life. So, no, it turns out after all that they didn’t need to do the transplant but my stem cells are frozen there in that big Boston hospital for the next 13 or 15 years so if I need them, they’re there and therefore, February 6 IS an important day for me. You know, it’s so cute because my friends’ daughter who now just turned one, in a strange way I relate to her because I feel like I’m starting over and in physical therapy trying to get my mobility back (so, am off balance like a child learning to walk) and I see her hair growing and it’s growing like my hair – only better – she just got her first ponytail and I still don’t have enough for that yet! LOL

But back to the milestones… so instead of hearing the labels many hear where they are in this part of the journey, what I have heard is that I have a higher chance of getting Lymphoma; I have heard that my auto-immune issues (I have had Scleroderma for about nine years now – well, officially seven years but very manageable) have complicated my case or possibly confused it; but I did hear that my first post-treatment PET CT scan didn’t have any lymph node activity and thankfully, I can report here per my last blog post that this most recent PET CT scan also didn’t show lymph node activity. After feeling like I was holding my breath for a week, I finally felt I could exhale! But I am cautiously relieved – they did see activity in my thymus gland and again in the salivary gland area and they can’t tell me exactly why but they again attribute it to the auto-immune condition – but really, they don’t know. They tell me it’s not cancer and as hard as it is to trust, I have to believe them. I do feel better – despite this lymph node flare-up I’ve been experiencing. They gave me a copy of the radiology report and it states they believe the thymus “uptake” is due to a “thymic rebound.” I didn’t read that until later so I didn’t get to ask my oncologist what that meant so I reached out to good ol’ Google and learned that while in chemo, your thymus gland can shrink and often while it’s recovering it can rebound and show up in a scan. Sometimes it’s mistaken for a relapse but my doctor never even said that. I wish he explained further what that all meant but I intend on asking him at my next appointment - but I'm glad I found that online. As far as this pain and sensation goes in my neck, I think about the beating my body took between the illness and chemo and I think my lymph nodes are now susceptible?

Anyway, I have to keep an eye on my lymph nodes and call my doctor if it gets worse or bigger and in the meantime I see him next in three months and have my next PET CT scan in six months. So as I have been doing, I will continue to work on my strength and recovery and continuing on this one day at a time thing because it really is working for me. :-) As far as milestones go, really every day is a milestone, isn’t it? Every day IS a gift.

 Bracelet that my parents gave me a few years ago, which I wore the day I saw my doc, shot while waiting to meet with him to go over results. Reminder of my faith and to believe.

Suspension - February 12, 2013

I feel like I’ve been holding my breath for an entire week. It’s suffocating… I had my second post-treatment PET CT scan last Wednesday and have to wait until tomorrow, a full week after, for the results. This is how it was in August and I blogged about it then – “Writing To Quell Anxiety” – and I thought I was anxious then but for some reason I feel more anxious now. In some ways I feel more anxiety within me than I did a year ago when I was in full-fledged battle mode. Maybe that’s why? The focus on fighting deters you from other emotions – it’s a focus and a numbness all at once. So it could be that I’m past the numbness and though I always will fight, it’s different when you don’t have the constant support or medical team around you.

It also may be because my lymph nodes in my neck haven’t been feeling right – I referenced a couple blog posts ago feeling a “fullness” on my right side, which in the past year I have felt before. It went away and it recently returned along with some pain. So that is weighing heavy on my mind. I am hoping it is just my still-recovering immune system and my lymph nodes being susceptible and flaring up. But here I go again trying to explain my anxiety. Why do I need to explain? It’s there, it’s understandable and normal and like I tell others in challenging times, I need to be easy on myself.

It’s not pleasant feeling this way. I don’t want to complain to family or friends because you either stir up that worry in others or you appear to be something you’re not so I try not go on and on about it but in my mind, everything feels suspended along with my breath…I try to distract myself but I can’t focus right…I put off making plans until I know my results…I am hanging in a thick fog of fear and worry and distrust and it’s rotten but like all the fogs that float my way, I will get through.

This is not lack of positivity. It’s not lack of faith or strength. It just goes with the program so to speak. I’ll be okay. I hope and pray that it will be alright. I just re-read my post from August of 2012 where I was in the same boat – day before finding out results and oddly it helped me a bit! I spoke of whatever the results are, I will don my armor for battle like before. That’s right! Okay, deep breath, Debbie…!

Facebook Break Days 6 - 8 - Mission Accomplished?!

I have become so bored with my own experiment that I am assuming anyone reading this would be bored as well. This has become so uneventful that I can really just sum up the last three days of Facebook Freedom in one post.

 

I hopped on on Day 6 because I got a notice that a friend tagged me in a post – he’s doing a great thing where he writes something nice about one of his Facebook friends each day. And he really puts sincere thought into each post – well this week, wouldn’t you know in my Facebook-free week, it was my turn so I wanted to go on and respond to it because he took the time to write a really beautiful statement. But again, after I wrote him, I had no problem logging off.

 

On Day 7, I again found myself not missing it. This is great because I know now when I return on Monday that yes, I will scroll and see what I’ve missed in my friends’ lives and I genuinely am concerned that I have missed important events but I know after I have done that that my Facebook habit will have changed. I don’t need to be constantly on there; I don’t need  it to be the first thing I do when I get up and the last thing I do before I go to bed – isn’t that supposed to be reserved for more important things? Healthier balance that’s all – that’s what one needs for everything in life. Too much of one thing just throws everything else off balance and I realized that letting something like a social networking site taking control of my emotions like it did just isn’t right. Oh it probably will still happen – I’ll see things that will annoy or bug me, I’ll still be posting my nonsense stuff (and some not-so-nonsense), but at the same time I’ll still enjoy what I always have with Facebook, which is that sense of being in a big room with all my friends every day. I love seeing vacation pictures or wedding and baby photos; I love seeing where they’ve gone in check-ins to see if it’s somewhere I’d like to go; I still need the support that I fortunately still receive from some friends; and generally I love scrolling through the News Feed to see what’s going on with everybody. None of that has changed but what has changed is the time, energy, and emotions I’ve let it consume. The moment I feel that negativity, I’m recognizing it and letting it go – and/or I’ll change settings – the beauty of Facebook…privacy settings!

Now what about that original post that I did a week ago (it feels like so long ago now!) where I talked about the new moon in Leo and what I should during my step-away time? Well, it mentioned taking time to get the creative juices flowing and I think I did. I worked on this idea that I’m brewing now, I finished that crocheted bag that I mentioned and nearly finished my second knitted hat (I just started learning how to knit hats). I pretty much made myself write every day here and that in general is a good thing for a writer to do. I also spent time on looking for work that I can do with my present situation.

Oh that Leo thing mentioned love and romance – hmmm…well, nothing there – at least nothing I’m aware of! Ah, well, that’s okay. I haven’t been out much and I’ve been “off the grid” so to speak and this time was really meant for me to step off and take a breather. Isn’t it still that moon until the next new moon…maybe there’s still a chance ;-) lol

 Anyway, I began this post the beginning of the day of Day 8 and finishing it now at 9:30 p.m. the evening of Day 8 because I spent the day with my family celebrating my niece’s birthday. What a fun day and not once did a feel a pull toward Facebook or any social networking site for that matter. Tomorrow I’ll return and things will be as they were and I’m sure no one will even have noticed my absence for a week or lack of “likes” but I know I’m the better for this break and that I shall do it again!

Facebook Break Day 5 – Uninteresting

Facebook Break Day 5 – Uninteresting

Well, I think I’ve become bored today with my Facebook vacation. I didn’t go on for any birthday wishes or anything, didn’t feel withdrawals, overall didn’t care. I think it’s because I’m feeling out of sorts and not well today. Also perhaps watching several episodes of “Nurse Jackie” a night is too much as I found myself feeling sad about missing my nurses and medical staff from last year and after a restless night of little sleep, had dreams of being in a hospital for my physical therapy sessions – which are not in a hospital, though affiliated with my original hospital. Dang – did I replace one daily ritual with another?!

Later after physical therapy, I started feeling that weird full feeling I have felt in my right lymph node on my neck (the one I mentioned in November) and though it’s a familiar feeling and possibly indicating I’m fighting something, it worries and depresses me.

So to make this post not such a gloomy one, I am posting my little crocheted bag that I finished today – which did make me feel happy and accomplished. :-) 

FaceBreak Days 2 - 4

(See previous post for beginning of this "series"!)

 

Facebook Break Day 2 – Oddly Enlightening

I start every morning logging onto Facebook and my regular e-mail and scrolling through the News Feed – before I even get out of bed. This morning, after reading my e-mail, it felt almost strange to not linger in bed catching up on my friends’ activities!

Today I learned how much time I actually do spend on Facebook (and we’re talking the jobless Debbie right now – when I’m working, of course, that’s a different scale of measurement) because I found myself with extra time! It’s enlightening and a bit disturbing at the same time. So how did I spend that time? Well, since I am in need of freelance or part-time work, I decided to spend that social networking time on LinkedIn – something a bit more productive. I also cleaned out another e-mail account that had accumulated way too many e-mails about sales and so forth – that’s the e-mail address I give for retail, etc. I spent time knitting and due to some sudden pain in my low back, I took it easy. To my surprise, I did not miss Facebook at all and in fact, I felt a bit liberated. This could sound silly but honestly when I think about how I lost sleep the other night over a foolish Facebook-related thing, I realize that was a huge wake-up call for me. When something takes THAT much control of your emotions, that’s a sign to step back and do something about it. I’m glad I did and I think I’m going to make this a regular thing. I don’t want to be ensnared by this site – ah, perhaps that word is too dramatic so let’s say I don’t need for Facebook to suck my emotions and energy on a daily basis. After my little experimental break this week, I’m going to regularly scale down.

Facebook Break Day 3 – Withdrawals Begin

I wish I felt like yesterday but strangely today after logging in to FB solely to send a birthday wish to someone, I found it difficult to sign off after catching a glimpse of a few status posts. In that glimpse I caught two posts that warranted a “like” just to support those friends. I mean, really, that’s one of the GOOD things about Facebook so I don’t feel I betrayed my break by doing that. However, when I signed off, I felt anxious. It really is like a dumb addiction and it’s like I got a taste of it and wanted more. So ridiculous. I’m embarrassed to even be writing this but I am one that believes self-awareness is the first step in correcting negative behavior or behavior we simply want to change.

As I mentioned in the initial blog post about this, I was reluctant to miss the posts on the Lymphoma page but I discovered today that I can access that page without actually logging into Facebook as that page is a public one so in essence that just makes it like any other web page. No little red flag of notifications, no temptation to scroll through the News Feed, and though I can’t write any notes of advice or support, I can at least just see the articles or uplifting notes that are shared and really with my PET CT scan next week and the anxiety building toward that, I need that page.

So other than the aforementioned, what was my Facebook-less Day 3 like today? Well, I had physical therapy but today it was just to address this strange low back ache I’ve been experiencing – again with fears of it being lymph node-related. My therapist alleviated those fears a bit with some of her tests but unfortunately that thought is always in the back of the mind. I wonder when that will finally stop or at least taper down…or will it ever?

I’ve also been spending my time watching “Nurse Jackie” on Showtime. I’ve always wanted to check out that show but never took the time and yay – all the seasons are On Demand! So I started Season 1, which began in 2009, a couple nights ago and now am so hooked, I’ve been watching several episodes a night. I’m already nearly finished with Season 1 and I’m wondering if I’ll be all caught up to the present by the time this Facebook experiment is done!

Facebook Break Day 4 – I’m Fine

I am fine – no biggie. No anxiety or withdrawals – went on today to wish two friends Happy Birthday and signed off. I don’t know what yesterday was about but I’m halfway through this break and today wasn’t really missing it.

I also want to do what that original Full Moon in Leo article said – about “getting the creative juices flowing.” Writing this little blog is one way just because it gets me writing. I also am spending time knitting this hat and today I turned what was supposed to be a crocheted hat into a little bag! LOL I have to laugh – I had attempted to follow a YouTube instructional video on how to crochet a hat and I thought I followed the instructions correctly but at some point I realized that hat could only fit a little head and because once crocheted, the “hat” really wasn’t soft or comfy but rather on the tough side, I decided not to make it a children’s hat. I’m nearly done with this bag and will post a pic next time.

So that’s it – knitting, sewing, finished Season 1 of “Nurse Jackie” and began Season 2, updated my resume and LinkedIn profile and looked for some leads.

Thanks for indulging me in these silly posts!