survivorThis weekend the boys and I, along with a few friends, will be participating in the Leukemia & Lymphoma’s Society’s (LLS) Light the Night Walk – Taking Steps to Cure Cancer at Cal Babtist University in Riverside, CA.  At the same time, my family – including my nieces, nephew, brother Mark and his wife Denise – will be participating in the same walk in Pennsylvania, near where I grew up.   (The name of their team is Team Dryjowicz East!)  Very cool and not surprising because it is the same long-distance, support system that stood by me this past year as I traveled my journey.

It is also exactly one year since the date of my diagnoses.  I’m fortunate that I had great care and was able to knock cancer on its butt!  Others, however, still face the battle.  For that reason, on Saturday night I will get to walk as a SURVIVOR while keeping in mind the battle that still rages for all those others with Lymphoma and all the other types of cancer.  This is my way of giving back and I hope you will join me in that effort:

Making a donation is easy! Please visit our fundraising Web site by going to:

http://pages.lightthenight.org/ocie/InlandEm13/TeamDryjowiczYou will get a receipt back immediately for your tax deductible donation!  

 Thanks all!  (Pictures to come!)

Recently I saw an interview with Hoda Kotb of the TODAY show.  She is a breast cancer survivor and she said someone gave her this advice, as she was going through her ordeal, “Don’t Hog The Journey”.  How apropos I thought.  I titled my blog “The Journey” without giving it much thought and have come to realize how sharing truly is helpful for me and apparently for others as well.  So, it is in the spirit continuing to share and “not hogging the journey” that I write this post tonight!  It’s taken me awhile to get this one on paper because these days I write from a different vantage point….

I recently reread all of the blog posts of the last year. (Yes, it has been almost a year!  Can you believe it?!)  Those posts were, for the most part, purely updates.  They served their purpose – informing friends & family, near and far, about the steps in the process of diagnoses, treatment, etc.  They were “moment in time” updates.  Here is what is happening today or my next appointment or with my physical welfare.  Makes sense – during that time we were “living in the moment”.  Doing what we needed to survive each day, each hour, each moment.  We were in survival mode – exactly as we needed to be.   To some of you, this sounds a little melodramatic.  Some of you (you know who you are!) didn’t even believe “she was that sick”.  Yep, I’ve been prone to induce a little drama in my lifetime especially when I’m passionate about something!  However, trust me when I say, I have no intention of lending any more credence or drama to cancer than necessary!  It sucked, we survived, end of story.

I also noticed how often those previous updates, and even now, I refer to “we”.  Interesting, but not altogether surprising.  I had Non-Hodgkin’s Lymphoma – the actual disease and subsequent ill-effects of treatment, HOWEVER, the four of us, WE survived cancer.  John and the boys survived a different type of “cancer” that spread through the house -  the type that has no name.  The type that you cannot necessarily provide a quick treatment for.  The emotional type – fear, anxiety, anger, helplessness, frustration and sadness.  In some ways they were in a tougher position than I was.  I KNEW what physical and mental  limits I could handle.  My tolerance for pain – physical and mental -is high.  On the days when I couldn’t handle it, yes, I unfortunately had to resort to drugs and slept the day(s) away.  Are they stronger for surviving this other “cancer”?  My guess is yes and I surely hope so as I would like there to be some positive that comes out of all of this on their behalf.  Why am I guessing?  Because they are boys/men – they do not talk about their feelings!  It is too early to say how their experience will manifest itself, only time will tell, but I will be on the lookout for these manifestations in the future, that’s for sure!  (Here’s an update – they have no tolerance for their ailing Mom anymore regardless of how I feel physically.  “You are cancer-free, you have hair, you look fine – now get back to work and let’s get on with it”.  This can be frustrating at times as I don’t always feel as good as I may look.  In the opposite regard it keeps me on my toes and moving!)  Hmm…I wonder where they get that?!

As for me, I’m in the “what the hell caused this cancer, how the hell can I avoid it in the future and while I’m at it, how the hell can I avoid it for my family and the rest of my loved ones too” mode!  Yep, you know what that means – I’m now a crusader!  I’ve started reading again and my reading materials include books about preventing and curing cancer which leads me to researching organic foods, pesticides, chemicals, diet, doctors, pharmaceutical companies, long-term chemotherapy effects, etc, etc, etc!!  Truth be told, the way I look at it, I’m allowed to be a little fanatical and if that means making some individual changes that aren’t always popular with the mainstream, my doctors (or my boys) then so be it.  I am now a firm believer that what we are ingesting – food, drugs, pollutants -  is at the heart of the matter.  Therefore, we should not be surprised that so many people  are getting cancer  -  and at younger ages.  It’s an epidemic that has roots in many areas – politics, big business and money to name a few.    Additionally, the engine can’t run if you don’t treat it properly.   Unfortunately, we take our body for granted and do not give it the priority  status it needs and requires. 

Okay, now all that being said, let’s be a little realistic – I still have an addiction to chocolate and sweets.  Surviving cancer did not preclude me from taking the boys on a “let’s visit every cupcake bakery in Southern California” tour this Summer.  We called it the “Summer of Sleeping Late & Eating Cupcakes”!  And we threw in a few Krispy Cremes and ice cream sundae’s along the way!   No, I’m not perfect.  Yes, I still have a lot work to do, therefore this journey (and personal crusade) continues.  Stay tuned!

 

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So I’ve been asked to keep writing….what was originally truly helpful for me (to brain dump), apparently has been helpful for others as well.  Who knew?!  If I can help others, then I’m all about it!

Speaking of helping others, I recently signed up and was chosen to become an “Imerman Angel”!  Essentially, I will be a support mentor to others facing the same diagnoses and treatment.  I will go through “training” and be matched with a person in need of support.  Of course, as you would expect these days, all of this will be done virtually, using email and/or telephone.   It was important for me to take what I’ve learned and be able to share in some positive way.  Once my “training” is complete, I hope to be matched quickly so I can be of assistance where needed.  Cool, right?!  If you are interested in finding out more about this non-profit organization, check out Imermanangels.org.  Yep, I’ve been called a lot of things, “angel” probably ain’t one of them – ha, ha about to change that!

So….mentally I’m doing great.  It’s like a big, dark cloud has been lifted from over the Dryjowicz household!  Everyone, including the boys, has been able to breathe a little easier.  Of course, I don’t think any of us realized how dark the cloud was until it wasn’t there anymore!   When people ask me these days how I’m doing, my honest answer is “I’m happy to be alive”.   Actually, I’m ecstatic and still living somewhat in a state of euphoria.  Not sure it this “state” will continue, but I’ll take it for now.  (And, I get a little peeved when people mess with my good karma state of mind!)

For various reasons, I still go to the hospital a few times a month.  It’s interesting that I still get nauseous when I’m in certain parts of the hospital.  The good news is that I can make it through the parking lot and into the hospital these days!  Apparently this is a learned behavior that will take some time to reverse – UNLEARN!  It’s a survival mechanism for my body.  My body associates certain smells with poison/chemo and does what it can to eliminate the impending doom; and here I just thought I was crazy!

Physically, I’m still fighting a battle.   Most difficult is the stiffness in my muscles/joints and everyday exhaustion as a result of months of chemo and steroids.    Walking, stretching , some basic yoga and lots of LONG naps seem to help!   Additionally, I forget that my immune system is still very compromised.  Last week, I apparently tested my limits and was probably “out in public” (Apple Store, baseball game, movie) a little too much and paid the price by catching a nasty stomach flu.  (The week before that it was a sore throat.)  Therefore, unfortunately, it’s back to rigorous hand-washing, use of hand-sanitizer and not so much out and about!

Ugh – recovery is a process, for sure – I’m learning!

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I learned that just like no two humans are alike, no two cancers are alike and therefore no two treatments are alike either.  Although we don’t often hear about it, a lot of strides have been made in identifying and treating cancer. (Still a long way to go in getting to a cure, however.)   Some cancers are now treated like a chronic disease – similar to high blood pressure or diabetes.  It is the “watch and wait” approach and treat as necessary.  Other cancers can be treated by targeting only the specific area of the body that is affected.  Additionally, chemotherapies have evolved so that there are many different approaches depending on the type of cancer cells.  It is no longer a “one size fits all”  approach which can mean less side effects,  no hair loss, etc. 

I learned last week that my cancer was stage 4.  (Up until then, we never asked the question!).   Diffused, large, b-cell non-Hodgkin lymphoma (DLBCL) is fairly aggressive which is why my chemo was also very aggressive.  Diffused – meaning “spread out” and in my case, spread to the fluid that was in my lungs – hence stage 4.   Due to the placement of the “mass”, too close to my heart, I was unable to have surgery.   Unfortunately, aggressive chemotherapy treatment was the most sensible option.

I learned many other things – big and small – over the past year.  For whatever reason, the day after I found out I was cancer-free, I started reviewing those things.   I thought I better write them down.  There are the 46 things I came up with – in no particular order.  Some are “life-lessons” that will most likely alter the way I live moving forward, many are purely related to treatment.  Perhaps the list will help someone else facing a similar predicament!  Here goes: 

  1. You absolutely must be your own best advocate
  2. All hospitals stink – literally
  3. When you can’t sleep at night, open the window and just listen, don’t think, listen
  4. Remember to thank your Champions
  5. The Millennials get it – they may only text you, but who cares?
  6. Make friends with your pharmacist(s) and staff – they know a lot
  7. Step outside – even if it is just to get the mail
  8. Recognize your irritability and attempt to stop it
  9. Don’t answer the phone if you don’t feel like it (even if it is your Mother!)
  10. Kids are resilient and realistic
  11. Alert the teachers – they are another set of eyes and ears who spend many hours with your kids
  12. Eat when you feel like it – mashed potatoes at midnight?  You bet!
  13. Ginger ale helps – I don’t care what anyone says
  14. It’s a marathon, not a sprint
  15. Eyebrows and eyelashes are the last to go and the first to come back
  16. Go sit on “the couch” with a psychologist, psychiatrist, hypnotist, stylist– anyone not related but who will listen and not judge
  17. Teens are embarrassed by you – with or without hair
  18. Listen to your chemo nurses – they’ve seen it all
  19. Stay present – one day at a time– don’t dwell on the past, don’t look too far in the future
  20. Have patience with your body– it’s confused!  poison tends to do that to it!
  21. You will get sick of talking about yourself – hide in the outfield (or wherever you need to where there are no people!)
  22. Don’t wear your favorite perfume, hand lotion, etc. during treatment – you will never be able to wear it again without getting nauseous
  23. Clean the refrigerator during a hot flash
  24. Steroids are a blessing and a curse
  25. It’s ok to play the “cancer card” every now and then
  26. Use the wipes on your grocery cart to avoid germs
  27. Get a second opinion – find the doctor(s), hospital, etc. that makes you most comfortable
  28. It’s true – the “crazies” are in the ER on Friday nights!
  29. Use the internet to your advantage – Google, Facebook, YouTube
  30. Stay on top of your nausea medication; don’t wait until it is too late
  31. Carry tissues – your nose will drip because there are no little hairs in there
  32. Know that you will inevitably miss out on things – like your son hitting his one and only Grand Slam in Little League
  33. Get a pair of glasses/sunglasses that look good while you are bald
  34. Drink Senna tea for constipation
  35. Find some little kids to hang with – they don’t recognize you look different and they don’t talk about cancer (they talk about themselves!
  36. Accentuate the positive (people), eliminate the negative (people)
  37. No overnight guests, I don’t care what holiday it is
  38. Use valet parking at hospital appointments
  39. Chemo-brain is real
  40. Anticipatory nausea is also real!
  41. Always take the “warm” blankets when the nurses offer
  42. Absolutely have general anesthesia if you have a bone marrow biopsy – it is a MUST!
  43. “Every step counts, even those we take to the trash can.”  (D. Lebo)
  44. “You just have to adjust yourself each day, put your big girl panties on and get through it.” (J. Day Moyer)
  45. Find something for people to do for you – they want to help, let them
  46. Be ready for a “NEW normal”, there’s no going back to “normal”  (What’s “normal” anyway?!)

 

It’s good news….today I got the results of my most recent scans and they showed no cancer.  My instincts told me it would be good news, but it was a relief to hear it from my oncologist.   I forgot to ask her what this is called – “Cancer-Free”?, “In Remission”?  I’m not really sure, but it doesn’t really matter!  The journey is not yet complete as there is still much recovery to come due to chemo, steroids, port removal, etc. but I can certainly deal with that.  I will be checked every three months for the next year and periodically after that for five years.

Thank you to so many of your for the words of encouragement, texts, instant messages, cards, meals, soup (!), flowers, Facebook posts, phone calls, and prayers.   They made the journey that much easier.   I plan to remember all of those positive things and forget the “bad days”. 

I will keep you updated on my further RECOVERY!!

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Last week I had what was hopefully the last chemo session EVER – treatment number 8.  Now it is a waiting game – wait a month then have CT and PET scans to determine results.  In the meantime, I’m learning to “be present in the moment”.   I know,  sounds a little “new age-y”, but I’ve been working with the psychologist on my team of doctors in order to not dwell on the past or the future.  Stay focused on the immediate present – listen, breathe.  One of the best things about our discussions is that she is a four-time cancer survivor.  Besides the “be present” techniques we are working on, the greatest thing she promised me is that one day I will wake up with no aches, pains, nausea, etc., etc. and will feel normal – of course, it is the “new normal” but still some semblance of normal.  Whew – I really needed to hear that from someone who has been there!

During this upcoming waiting for results period, I will also be having outpatient surgery to remove several kidney stones in my left kidney.  Unfortunately this is something I’ve suffered from since my 20’s.  In my previous PET and CT scans the stones showed up and have been causing me some pain lately.  The lymphoma was the priority, however, but now is as good a time as any to deal with this too.  Again, being in good hands at City of Hope, the decision was made to be proactive and have the stones removed and analyzed (via scope & laser surgery).  The good news is all of my pre-op procedures are already completed since those tests have been run every couple of weeks since my diagnoses anyway.  Once the stones are analyzed, these days, apparently there may even be preventative measures I can take to prevent stones from forming in the future.  Awesome!  One less thing to worry about!

In the meantime, I will also begin working on getting my strength back – both in my brain and my body.  Chemo-brain is a real thing as my kids are so happy to frequently point out every time I forget one little thing!  Again, working with my psychologist, we are starting s-l-o-w on getting back my concentration.  Last week I started doing some word-find puzzles and most impressively, I read “People” magazine from cover to cover.  Yahoo – it’s a start!  Being an avid reader prior to six months ago, I hope to start reading again everyday by the end of the month.  (Books  – not “People”!)

I will need to do the same with my body.  Unfortunately, I have what is called chemo-induced peripheral neuropathy (CIPN) meaning that the nerve endings in my fingers/hands and toes/feet are numb.  It started in the tips of my fingers/toes and during treatment has crept higher which makes my forearms and ankles/calves very weak.  Most times this will be reversed but can take anywhere from 6 months to a year or longer.  Once we get through all cancer results, I will most likely work with the doctors on a physical therapy plan.

So the journey continues.  As my friend Meg recently reminded me: “it’s a marathon, not a sprint”!  So true and exactly what I needed to hear.  Ironically enough, I’ve used these same words many times in the past when dealing with employees at work.  I never thought to apply to my own situation!  I’m used to making a list and checking things off quickly:  diagnoses – check; find a Dr. – check;  tests – check; chemo – check!!    I assumed I was at the end of the checklist, however that is not yet to be the case.  So, while the finish line is not yet in sight, I know it is getting close!  Still more to come….

On occasion I do have moments of clarity (and humor).  Today was one of them.   As you might imagine, when I look in the mirror these days – mostly when I wake up in the morning – I do not recognize myself.  Bald, pale, dark circles, eye sunk in my head, wrinkles (ok – wrinkles I probably would have regardless!) – unfortunately, it is in these moments that I am reminded that I have cancer.

Several months ago, right after my first chemo treatment, I attended a class at the City of Hope.  It was entitled “Look Good…Feel Better”.  It was sponsored by the American Cancer Society and the National Cosmetology Association.  The purpose was to learn how to put on makeup (sans eyelashes, eyebrows, etc.)  and how to wear wigs and scarves.  The class was fine, really nothing I hadn’t heard before, but the real benefit was I got to leave with about $200 in free loot – cosmetics from Revlon, MAC, Avon, Dior and more!!  The other benefit was meeting other women in the same “predicament” and to share stories.  For instance, that was where I learned that your eyebrows and eyelashes are the last to fall out, but the first to grow back!  It was good to hear about others’ and their coping strategies.

So, today as I was using these cosmetics to transform my face into somewhat of a “normal” state, it dawned on me.  I was drawing in my eyebrows and thought,

“Hmmm, today I should draw ‘mean’ eyebrows and scare my kids!”  YES- JUST LIKE PLAYING WITH MR POTATO HEAD!  Everyday, like Potato Head, I start with a blank potato, add “stuff”, and you never quite know how it is going to turn out.  Some days I wear glasses, some days I have pouty lips, some days I wear a hat, some days my eyes are crossed, some days my ears stick out (of my hat!).  How funny to think I have something in common with Mr. Potato Head!  This made me laugh – good to know I still have a sense of humor somewhere inside!

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My birthday is this week and for the first time ever, I actually feel my age – or worse.  I’m turning 46, but I feel like I’m 86!  (And I look like I’m 96! No hair, no eyelashes, no eyebrows and a whole lot of stress has a tendency to do that to you. )  I told my oncology nurse this.  She laughed and mentioned something I hadn’t given much thought to – she talked about my “new normal” post-treatment.  What?  I’m dreaming of everything going back to “plain old normal”.  I’ve even written about it a few times,   What is this “new normal” business all about? 

Ironically, that very same day, as I was waiting in the City of Hope library for my drugs to be delivered, there was an article written by a woman a few years older than me.  She had lymphoma also and the article was all about surviving and living her “new normal”.  She talked about the lessons learned and how she views each day differently.  This was terminology I was unfamiliar with and then to hear it twice in one day.  Huh!

Apparently it will take months, maybe even a year or more for my body to recover physically.  Even then, my body will not be the same and will need to get used to this “new normal”.   Mentally there will be some challenges too; partly from the chemo (a.k.a “Chemo Brain”), partly from the life altering event.  Not to mention the stress of CT Scans, check-ups, etc. over the next five years.  Honestly, I hadn’t given any thought to this, but it makes sense.

Right now we are dealing with the “current normal” which essentially means there is no normal at all.   I open my eyes in the morning (provided I’ve gotten any sleep at all due to drug-induced insomnia) and never know what to expect,  Lately, that “daily process” has gotten harder and not one to tell a lie, I’ve had enough already!  I just completed chemo #6 and unfortunately the side effects seem to appear quicker and linger longer.  I guess this is so be expected given the build-up of cancer-fighting drugs in my system.  Feeling useless is the worst part for me – I’m not one to lay around in bed all day, especially for several days in a row.  (It is also not the kind of role model I want to be for my boys.)  Tonight I took three trips to the trash can in the side yard, just to feel useful AND to get outside for several minutes.   In order to complete that menial task, I was in bed most of the day building up some energy!

I’m hopeful that by next year’s birthday, I will be attuned to whatever this “new normal” brings both physically and mentally.  I guess I look at it this way, anything is going to be better than a day with nothing but three trips to the trash can, right?!

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Chemo treatment #5 is tomorrow.  I have come to dread these days.  Well, not actually the day itself as I sleep through most of the day.  (Yes, there are drugs in my “cocktail” that make me sleepy!)  It is the days following chemo that are not fun.  

 

There is good news, however.  Last week I had my mid-point CT scan.  The tumor has shrunk by half, possibly a little more!   I was not surprised to hear this news as I knew chemo was working.  I don’t have the symptoms (in my chest) like I used to.  No more pain or burning and no more coughing from fluid in my lungs.  Chemo certainly takes its toll, but obviously does the job.

 

Bad news – a new chemo side effect has taken hold – I’ve officially entered menopause! Well, at least that is what we think is now causing hot flashes and other not-so-pleasant symptoms.  It is hard to tell exactly because of chemo and so many other medications that I take that have their own side effects.  Menopause was to be expected, I suppose, but it feels like adding unnecessary fuel to an already raging fire.  What next?  UGH!

 

The second piece of good news is that I am halfway done the chemo treatments and all of us are surviving.  (Ok – some days it feels like we are barely surviving, but surviving we are. )  We’ve pretty much gotten used to the schedule and can plan around the appointments and the “ugly” days.   The kids are cute – before going out the door to school, they will ask “what appointments do you have today, Mom”.   They have certainly adapted!  That said, it will be nice to put all of this behind us and get on with our “normal” lives!

 

So, that is the bad news sandwich!  Let’s hope that is the end of any more bad news.  Only good news from now on!

 

This week I will go in for chemo treatment number four – I am scheduled for eight treatments, which means I am almost halfway there – YAHOO!  So far, I’ve been lucky.  Other than “normal” chemo side effects, I’ve not had any other major complications.  The latest is losing my eyelashes – they are just about gone.  Still have eyebrows though – that’s a plus!

So what have I learned so far at the halfway point through this journey?  I guess it is more of what I’ve observed than learned.  I’ve come to realize that most of my friends and acquaintances apparently are not used to knowing someone “my age” (young that is!) who has cancer.  They may have known an older grandparent or relative who had cancer, but not anyone their own age or close to their age.  So, what does that mean?  Well, it means they are somewhat uncomfortable around me.  Some have come right out and told me they don’t know what to say.  It is the “elephant in the room” – perhaps if they pretend it is not there and just ignore it, it will go away.  (In my own experience unfortunately, I’ve known several people my age who’ve had to battle this beast.  It is from them, that I draw some of my own strength.)

I’m here to tell you, “the elephant in the room” does not just go away if you ignore it!  Therefore, my advice is this, don’t ignore it.  I have cancer – that’s it.  I’m still the same person – just going through a weird time.  Still the same Mother, Wife, Neighbor, Friend, Co-Worker, etc, etc, etc.  Don’t know what to say to me?  Well, I’m here to help you out.  Here are some examples: “Hey – how’s the cancer going?;  “How bad are the chemo treatments?”; “How is City of Hope?”; “I like/hate your hat!”; “Hey – your hat/wig/beanie is on crooked!”;  “Does your bald head ever get cold?”; “Do you puke a lot?”;  “Got any weed I can buy?”.  You get the idea – pick one – just say something that is relevant!!!  Do not ignore “the elephant in the room”.  Trust me, I will have an answer for you!

On a related, positive note, I’m happy to say I have a new appreciation for the “millennials” – the younger generation. – when it comes to this topic.   I have five nieces and nephews all in their early 20’s.  I hear from four of them regularly – through text, instant message or Facebook.  They shoot me short notes:  “how are you feeling”; “how was treatment today”; or just plain old, “I love you”.  They are not afraid to address the issue (elephant in the room!)  head-on.  I don’t care that it is through text message – that is the world they know.   Hey – at least they are not ignoring the situation and they are communicating.

I had a visit from the young neighbor down the street – also in her 20’s.  I hadn’t seen her in months and she showed up one evening at the door with flowers!   She’d heard I was “sick” and just wanted to drop by.   She stayed about 40 minutes just to chat.  She wasn’t afraid to see me.  Impressive!

I was  waiting in the car at  Cam’s practice one night when there was a knock on the window.  It was the two older, teenage brothers of one of Cam’s friends.  They wanted to say “hi” and see how I was doing.  They gave me big hugs and we chatted for a few minutes.  They could have just as easily walked on by and ignored the old, bald lady with cancer!  They also chose not to ignore the situation.   Kudos to these guys and probably bigger kudos to their parents who are raising thoughtful, well-mannered children.  Again, very impressive.

Why is this group of “millennials” better at not ignoring “the elephant in the room”?  Why are they not afraid to address the situation (or person)?  Let’s face it, in some respects these kids handled the situation better than some adults I know!  My guess is it’s because they’ve been exposed to the “cancer” word and what it means since an early age.  I know with my own boys, they were well aware of “cancer” before I was ever diagnosed.  Hearing the word “cancer” was not scary for them.  They hear about it on TV.  They know October is  Breast Cancer Awareness month.  They are familiar with the pink ribbon. (Cam wanted to know what color the Lymphoma ribbon is!)   I participated in a 60 mile Breast Cancer walk when they were 5 and 6.  They watched me train and came out to support me.  For better or worse, this generation has definitely been exposed. 

Unfortunately, at some point, you will most likely know another person who is battling cancer.  Take a lesson from this younger generation and say or do something.  Be thoughtful and don’t ignore “the elephant in the room”!  I promise you, it will be better than saying nothing at all.

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