Testing Testing 1 - 2 - 3

Last week I shuffled off to my scheduled battery of blood tests to try to get some help with how crappy I have been feeling.  I have now processed and can put into layman's terms the conversations I had with my doctors, and I thought I would share these results here so as to shed some light on the mysterious "blood work" I often mention.  

Commonplace in western medicine is to draw blood and analyze the particles within to learn valuable information about a patient.  Anyone with a disease or health issues being monitored by a medical professional is familiar with The Lab Visit.   Even when doctored by a Naturopath there are quite often blood tests recommended or requested to help determine health dilemmas, and that blood work is done in the mainstream hospital or laboratory as well.   

 

<---  That's me.  When I register for my bloodwork at Odette(Sunnybrook) I get a baggie of vials to hang onto until it's my turn.  Those vials are special for the trial and are in addition to the usual seven more vials chosen in the lab.  My record is 23 vials of blood drawn at one visit!

 

As a stage IIIB cancer patient I have blood taken at MINIMUM every six weeks, to monitor my health but also as stipulated by the clinical trial to treat melanoma in which I am participating.  They check for many different things including general information such as pregnancy, HIV, anemia, high blood sugar, bad cholesterol - all of which I consistently test negative for thank you very much.  They also watch closely many other factors including electrolytes, liver profile, cortisol, hormone stuff, and a bunch of things ending in "-cytes."

For the post-thyroidectomy papillary thyroid cancer side of my journey, I also have blood tests every three months plus at random times if needed, based on my feeling of "general well-being."  They check my TSH, Free T4, and Thyroglobulin, which apparently indicate whether or not I am taking an appropriate dose of that thyroid hormone replacement medication every morning an HOUR BEFORE my morning coffee.  Based on that and my general yuck feeling and weight gain, we decided last week to increase my thyroid hormone replacement pill.  Because I had two of four parathyroid removed they also have to watch my calcium levels so they check calcium and albumin regularly, to check on my calcium supplement intake.  

One nice thing about these tests is that I can see them all and understand where I am with them.  Sunnybrook posts them all on my online chart thingy I can log into, and my family physician explains them to me as well and shows me cool graphs of my results.  These tools help paint more of the picture of where I am at, how my history has been, and how I may expect to feel if any of these things change in the future.  

Who wants to know all of this stuff if they are not a doctor?  Some do, some don't.... I do, when it comes to feeling ill and/or fatigued.  I can watch trends and learn about how my body functions. Or doesn't.  

I want to detail some of my results for those who may experience the same things but without the benefit of the amazing doctors I have the privilege of working with.  In all of my charts of results it shows what my blood value is, and it shows the optimal range of where it should be.  Here are some of my favourites:

• Ca (Calcium)  - mine is at 2.11, optimal range is 2.10 - 2.55 mmol/L

• Albumin - mine is at 43, optimal range is 35 - 50 g/L

If calcium is too low (hypocalcemia) then there is risk of seizures, muscle spasms and paresthaesia.  When I get cramps and tingling pins and needles in my hands then I hurry up and take an extra dose of calcium and the accompanying fancy vitamin D thingy I receive by prescription. 

• Fe (Iron) - mine is at 29, optimal range is 7.5 - 32.2 umol/L  

This one is unrelated to my cancer, but I find it interesting because for years after a period of vegetarianism I struggled with low iron, to the point that I was unable to donate blood. I took iron supplements and BBQ'd lots of steak and I am now happy to report this is one that I don't have to worry about.  

• Platelets - 177, optimal 150 - 400 x10E9/L

• White Blood Count - 4.6, optimal 4.0 - 11.0 x10E9/L

• Auto Lymphocytes Abs 0.9 (LOW), optimal 1.5 - 4.0 x10E9/L

I'm unclear as to the details of these results, they are on the low side, but I am told this is normal for someone receiving the type of immunotherapy treatment that I am. Doesn't directly relate to how I am feeling, just internal mumbo-jumbo.

• Free T4 (Partial) - Thyroxine, Free - mine is at 15.4, optimal range 7.5 - 21.1 pmol/L

• Thyroglobulin, mine is undetectable, which is a good thing.   

Thyroid levels seem to be okay, we have increased my daily dose and will check again in September to see how I am feeling, but otherwise we await the thyroid ultrasound in October to check for recurrence.  Sadly there is not a blood test for that.  Nor for melanoma, check for recurrence is by CT scan.

Well if you're still with me after all that, thank you. LOL  If you found that interesting in any way then thank you also, bravo!  

To me it is strange how it all works - sometimes I feel like a guinea pig, sometimes like a science experiment, and sometimes like a sick person who doesn't care about these details I just want my life back.  Regardless, we press on, doing what we can to figure out whatever we can, and we use tools such as these blood tests to make educated guesses about what decisions to make in my health care.   

Support Group - Coping with Cancer

Again last week I checked myself into the comfortable seat across from my therapist at the RVH Cancer Centre, at the urging of my loved ones: perhaps time for a little check-in with the outside (trained!) party who helped me through some very dark days this past winter.  

I have had therapy/social work off and on since I was eight years old, for an assortment of reasons (primarily for grief of fluctuating degrees, and divorce - my parents', and then many moons later, my own), so I am comfortable with the scenario.  

I appreciate receiving the opinion of someone who does not know me outside of that room.  Someone who can focus on what I am saying or portraying, based on my words, and not on their conceived notions of my whims over the course of knowing me prior.  Prior to cancer?  Prior to being smarter than I was when I was a teenager? 

Anyway... I opened the conversation with a glib "You know how you see your medical people regularly and everything seems great so you reduce your number of appointments and then the wheels fall off the cart? Well - my wheels have fallen off and I need your help."  

Hey, we only have an hour, I need to cut to the chase. 

We had a good discussion about my current state of treatment and health level - physical, mental and emotional - and I left with a couple of new tools in my repertoire to take to my family and discuss with them. (enter yawns here)   Please remind me I need to book another appointment to check in again in the fall as I should not leave it so long until next time.  

The support programs available at cancer centres are wonderful, accessible, life-changing for many.  Even though my employer benefits can augment emotional support with my diagnosis, I have not yet had to tap into that resource as OHIP/the cancer centre has it covered.  I am truly grateful for the support and I am glad I pursued this part of my therapy (couldn't procrastinate like I have with my lymphedema therapy).

I was invited to a relatively new support group they have started at Royal Victoria Hospital in Barrie, "Coping with Cancer."  Again, cutting to the chase, I immediately jumped at the chance, as I truly enjoyed and deeply benefited from the Support Group in which I participated in February, the "Legacy Group."  I got to discuss various highlights of my life span with an amazing group of women, and I feel I gained experience and friendship from them that I will cherish for the remainder of my life.

Today my daughters hung out at Gilda's Club next door to RVH while I met some new people with varying degrees of cancer-coping, and I left with new experience already, and a renewed sense of hope for my future, regardless of how immediate.  I even connected with a fellow melanoma patient, and a couple of people from closer to Meaford than Barrie.  I look forward to the chance that I may see these folks again and have the opportunity to share with them in the coming weeks.  

This small ray of hope may seem silly to people who know me (or do not know me) but have not experienced cancer, but I know you will trust me to say it is helpful. It is helpful.  

Even if it is only one hour every two weeks that I can sit in a room with people who share the same fear, anger, grief, sadness, or pain that I do, then it is one hour in which I can deal with my fear, anger, grief, sadness and pain.  I can just be me.  And who knows, maybe a better me will emerge from all of it.    

Reminds me of a blog post I wrote in April as a guest writer for saveyourskin.ca - Save Your Skin Foundation, a melanoma-awareness group from Vancouver with whom I am happy to have made a connection and hope to further build a relationship with in the near future. 

It was called One Melanoma Patient's Need for Community    At the risk of boring those who have already read it, I am re-posting it here, as it is still valuable to me, four fast months later.    

Today I am reminded of the feeling of relief I experienced this past winter, when I found a safe environment and the common ground I need.  This stupid sunny scorchingly hot summer I feel the same way:

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

One Melanoma Patient's Need for Community

I find it comforting to meet or speak with others surviving the melanoma maze. Visiting my cancer centre on a regular basis for all of my appointments and treatments, I sit quietly with my peers awaiting theirs, but I almost eagerly strike up conversation if someone even glances my way. I must startle some of these unknown strangers, likely appearing like some overzealous puppy jumping up to make friends, panting all over the place. I have plenty of wonderful friends already, but I seem to crave new friends. I want cancer friends, I need common ground.

Since my diagnosis and countless consultations with medical professionals of all types, I still find the greatest comfort speaking with others in the same boat as I am. We compare facilities and oncologists, pain levels, side effects, and remedies for improvement of our symptoms.

We are all there for the same reason, and we seem keen to exchange stories and curious questions about clinical trials and treatment options and number of surgeries under our belts. It is a strange language, one I have learned a lot about in the past year, but one that I believe I will never fully understand.

I have happened to have met three people with melanoma, but that's it. It is not the most common ailment along my traveled path. All cancer cases are personal of course, but I quickly learned that melanoma is even more a mysterious beast.

Melanoma patients are a unique breed, fighting a unique battle, and we need comrades on our side. Talking it out with someone with the same type of metastatic cells not only eases our psychological burden, but it lends hope to the fight. It reinforces in our minds and bodies that we may have other options to explore or other questions to ask our oncologists. There are other people ALIVE coping with what we are coping with, and they may be able to help.

Life raft thrown out! Even if for just one day, that is one day's worth of hope that I may not have had if I hadn't spoken with my comrade.

Online resources are a huge help also - when first diagnosed I was banned by my doctor from the internet, but now that I have learned more and I am more comfortable with the way things seem to work, I feel less panic about reading things online about my disease. Even the venting of fellow bloggers is comforting, I feel relief when reading their words and knowing that I am not the only one who is afraid or discouraged or angry.

I can sift through the medical terms and look past the statistics, and every now and then I find a nugget of information that sends me in an entirely different direction, usually uncovering another piece of my puzzle. Whether about melanoma or the likes of a new meditation technique, it gives me the feeling that there is something I can do about my situation, and that there are others who are doing the same.

I remember feeling when I was first diagnosed that I was walking around with a giant digital clock above my head, with large green numbers counting down to my expiry date. I felt I stuck out like a sore thumb, wore that clock around like a black cloud, wondering how to get it away from me. I ducked and dodged and denied until I was blue in the face, now I focus my energy on positive action, namely, writing or talking with anyone willing to show their community flag.

The clock seems to have faded this year later, but it is not gone. That is in part due to those that I have connected with, in person or online, that have said the same things I have felt, or that have experienced the situation I am in. Venting, learning, sharing: all coping mechanisms.

I trust my oncologists, but I gain extra strength when I speak to people who have walked the same steps I am being directed to take. I hear it repeated and think it is a good sign that I am not some entirely solitary being receiving a mystical treatment unknown to anyone outside of the chemical laboratory that mixes up my IV bag of potion.

Every day I push on, hanging out with my family and friends, going to my appointments, resting with my cat, and seeking the additional community that I need in order to properly fulfill my ambition to fight melanoma. I have to fight my individual battle my way, but I am also content to share that fight with others, either gaining from their perspective, or being able to help someone else in some small way. We are all neighbours on this ship, and I think we can paddle together to keep it afloat.

Natalie Richardson

www.impatientpatientmomma.blogspot.ca

Week 53

I think I got my grumps out in my last pity-party blog post, perhaps that was a little case of writer's block?  Thinking if I get that out of the way, I can write about the good stuff again.  The fact that I have gotten away from my writing hobby is an example of how disconnected I have been feeling from everything.  

I have mentioned before that I don't feel well, I am not myself.  I am not as quick or as clever as I was before, but, having said that I want to describe what other things I have been up to.  

As a typical Gemini personality I seem to be able to function on both sides of the happiness spectrum?  Comparable to a "functional alcoholic" perhaps, I maintain a "functional cancer patient" lifestyle.  I go out in public and people compliment my "healthy" appearance, but inside I am screaming UGH!!! I feel YUCK.  I cook meals and drive my kids places and do my errands, but I also go to my appointments and consume my prescriptions and bear countless needle pokes.  I should be grateful for all of it, and I know somewhere inside I really am.  

Until I am able to truly embrace that gratitude my plan is to keep busy with the stuff I have always wanted or needed to do.  Plan for the worst, hope for the best.

I have been busy indeed, trying to just live the life I keep complaining that I am missing out on.  Obviously I am not yet back to work, that is still a long way off.  I do not even complete this clinical trial until November, and there will still be plenty of physical and (obviously) mental work for me to do after that.  

I often fantasize about being back at work and happily greeting my old customers and then I turn around, visualizing the complicated weekly cashier schedule it is my responsibility to write, and I cringe... I know my co-workers would have a field day with my dim nature these days and my forgetfulness, and the debilitating fatigue which habitually turns to outrageous irritability.  hhmmm... I don't think I would last long back at the office, not ready yet. LOL They would eat me alive!!  Or I would eat them  Aaarrrghhhhhh!  ;-) 

I have been trying to think of how to explain the type of fatigue I am experiencing... cancer friends please feel free to comment!  It is some unique heavy-in-the-bones feeling that just stops me in my tracks at any moment.  I DO push myself all the time - I am more active now (especially with puppy and kid on crutches!?) than I have been in a year.  But there are days when there is just not a drop of energy left in any single one of my cells. At noon!!

It is physical but also mental, it is what makes me shy away from visiting at this time.  It is not that I don't WANT to visit my friends I haven't seen in forever... it's just that I CAN'T.  Yes, there is such a thing as can't, I know, because I am living it.  
I am easily (unexpectedly!) overwhelmed, especially by noise and commotion.  And usually I hide it, but suffer over it later. 
I DO push myself all the time, and it barely covers the bases.  I have to pace my activities and my timelines. If I had a full staff of housecleaner, cook, gardener, chauffeur, timekeeper, executive assistant, problem-solving Mother bandaid-applying stand-ins then I'd be laughing!  Yes please sign me up for visits in between my naps and lymphedema massages.  hey...this actually doesn't sound like a bad idea........

At the end of June I had my seventh of eight pacmen (ipilimumab) treatments, and at the time I had planned to write a blog post about how quickly time had flown.  I was being hard on myself for all of the things I had not accomplished that I thought I should have in that three month time span.  

Instead I turned my attention to all of the things I HAD accomplished, namely adopting our lovely chocolate lab puppers, getting some work done on my little house, and getting the girls through their very difficult school year of the awful grade seven. 

I had planned to list them but never did write it, somewhere between the insomnia and the broken ankle (Cassie's, not mine!) I have lost track of time and I am now closer to my next treatment than my previous one?  And my NEXT dose of CT scan water stuff.... bleccchhhhhhhh

 





<--- This is them, "encouraging" me to drink my huge bottle of hateful CT stuff while they drink their Pellegrino. *sigh*  ;-)











In any case, I have plenty of photos of what I have been spending my precious time on.  I hope you enjoy it as much as I have:

First off - hummingbirds!  I have never had a hummingbird feeder of my own, and one item on my summer bucket list was to get one, and more importantly, host a birdie at it.  Sure enough.. a few short days after I hung it for the first time, I got one!  We have a little hummingbird that visits every morning and every night (as long as I keep the liquid inside clean and fresh).  I managed to snap a little pic of him the other evening - not great quality but still, my first and happiest bucket list item - check! 

In May I had the electrical work done in my house that I have wanted to do for 12 years.  New electrical panel and all matching outlets all operational, modern, and safety-approved.  Happy camper!  

We did get away for a tiny camping trip, courtesy of Grandma and Grandpa Richardson we loaded up 3 kids, one dog, and all of our gear into 1.5 vehicles and took off to the land of no cell service.  It was great while it lasted...

Sadly this is where Cass had her longboarding accident and broke her leg, ending the trip in an operating room in Owen Sound.  

I have been teaching the girls Ukrainian, reading writing and spoken.  They are taking to it like fish to water.  :-)

I have been planning for a little renovation of our kitchen, including new cabinetry with drawers that will be easier for me to use, and new flooring without the grooves in it that trip up my heavy leg.  That should be happening in early Fall so stay tuned LOL  Here is a teaser of the flooring, cabinetry and countertop:

The girls had a little yard sale and lemonade stand one Saturday morning.  Went well and they did a great job!  Even got up at ssiixxxx  aaaaa mmmmmmmmm to set up.  Needless to say we did all nap in the afternoon that day. 

The other day I had an Arborist/crew in to properly prune the big trees on my property.  Another job that has been waiting for 12 years!  I am so excited to report that the trees are properly trimmed and are forecasted to continued healthy growth into the future.  Take a look at the before and after pics of our back yard-maker:

Oh and another bit of excitement here, Claire went on a trip out west with Scott!  They left last Sunday all loaded for deliveries in Winnipeg, Regina, and Saskatoon, then they loaded cattle in Alberta and they are now on their way home. She seems to be having a great time, Cassie and I have received countless giggly phone calls at all times of the day.  Scott may be ready for a break from pop music by the time they get home tomorrow? ;-)  

<---- I'm told she was allowed to get actually IN the truck LOL

Off they go!  --->

It has been an excellent experience for her, I have dubbed her the world-traveller and told her she now understands Canadian time zone changes better than I do (Saskatchewan is different in summer and winter apparently?). 

I have had a glorious (quiet) few days with Cass all on my own - the longest Claire and Cassie have ever been apart!  Our stress levels have decreased a bit, we have been able to bond with each other and the dog and cat, only having to agree with each other about our dinner menu (no three other bodies to interfere!) 

Just kidding... but we have had fun, and though I wasn't able to slip away on a little holiday this weekend I do not regret it, as I have been able to soak up my Cassandra.  We have had a couple days of movie marathons as well, she is a horror film buff, and TRULY one now that she has seen The Shining and Psycho! We watched those and then cleansed our scared souls with 80's comedies and romantic French films.

   

It will be nice to have everyone back under one roof next week... thankfully I go to Toronto and Barrie!!  ;-)   

The rest of the summer should be quieter..?  But we shall see.  Above all I hope to get to some writing.  And get Cass back on her feet, and keep from going broke with back to school shopping, and get some visiting in...  And and and...  

Two months away from blogging...

...and all I can come up with is I HATE CANCER.  I am so sick of it, and it is pissing me off! I seem to be stuck in some purgatory juggling fear, guilt, and treatment side effects with the need to accomplish everyday tasks in a busy family household.  

I haven't been communicating very much, as many friends have asked me about, and I have the same answer for everyone: It's not you, it's ME.  

I am busy, tired, and grumpy, and I do not want to continuously burden my friends with that negative energy.  It's been more than a year now for pete's sake!! Will it ever end?? I am pretty open about my feelings and I am decent at being bitchy when required, but it is not my preference to stomp around cranky 24-7, though, as my family can attest, that is typically how it has been these days.  

As I have mentioned before, I try to live by the old adage "If you have nothing good to say, say nothing at all."  But I have also been encouraged recently by friends and loved ones to express my emotions, and acknowledge them and request that others acknowledge them. 

Harder than it sounds.  

Every fibre in my body just wants to take off for parts unknown, start fresh, forget this whole cancer thing and MOVE ON.  

It is NOT a reflection on those around me, it is simply where I'm at right now.  To look at me you would not know that I am in treatment for cancer and struggling with every detail that entails (or at least that's what everyone says when they see me). 

Thyroid cancer has left me with symptoms that slam me in the face daily, and melanoma haunts my every thought and ambition. I can't even move without these reminders, and I am having trouble accepting that that is it, this is the rest of my life.  Pity party perhaps, but reality for me nonetheless.  

I don't want to talk about it, and I try not to, but I find I just carry this cloak with me everywhere I go and share this cloud with anyone who dares to ask me how I am feeling.  

I want to hear how you are doing too!  But I am afraid I can't contain my crap and absorb your good stuff.  I am tired.

My friend reminded me the other day that summer vacations tend to have this effect on me, and I suppose that is true.  I love spending time with my kiddos, but the disruption in our daily/weekly routine with 2.5 teenagers and their friends daily take its toll on my nerves.  LOL  

I seem to be back in the stay-at-home-Mom role at this point in my life, and I appreciate that opportunity of course, but the career-woman in me balks at the daily sink full of dishes.  Mothers of young families have no time to themselves.  At least the school year brings a six hour per day reprieve, or going to work brings a change of scenery and pace.  Of course I am not making an official complaint - my disclaimer is that yes yes I am happy to have a healthy happy loving family blah blah blah. Thank you.  ;-)

Speaking of healthy, or UNhealthy rather... Cassie broke her leg and ankle while we were away camping three weeks ago.  She crashed her longboard and snapped her tib and fib, foot hanging at a weird angle, and required surgery in Owen Sound to repair it with a plate and several screws. 

Her Dad stayed with her overnight in hospital so that Claire and I could get our camping gear home and cleaned up, crutch-proof the house and stock up on the likes of ginger ale to soothe Cassie's post-anesthesia upset tummy.  She is now starting to feel a bit better and is getting around more.  She had her cast removed and is in an air-boot now (conveniently we had one from Claire's ankle break last fall!?) so she can try to move the ankle a bit, although she is still three weeks away from attempting weight-bearing.  

Health-wise for me there is not much news.  I have had my regular bloodwork checkups and I have more this coming week.  I don't know why I ever worried about not being able to be a blood donor anymore, plenty of my precious blood seems to be finding it's way into other people's hands.  I had my seventh ipilimumab treatment in June as scheduled, and my CT scan reports came back with no new metastasis(spread) which is good news. That's my three month pass.  That's all I get, three months at a time. 

Bloodwork has been okay, at one point I dabbled in dangerously low calcium levels but remedied that quickly with an adjustment in prescription. Otherwise thyroid levels are okay, but given my fatigue and weight gain I feel there is still some adjusting to do to the medication, I will see doc this week after bloodwork to keep working on it.  Eight months since thyroidectomy, one would expect to still be having problems? 

Melanoma-wise my last treatment is in September, wow time flies.  I will write more about that in another post.  But medically-speaking not much new to report. My side-effects have varied with each treatment, and this round the tummy trouble isn't as bad but the insomnia is crazy.  Like Chinese water torture I imagine, not being able to sleep when you really want to is unbearable.  It affects everything, including what I suspect encompasses my mood and emotional and mental symptoms.  

I have read that depression and stress disorders are common alongside melanoma diagnosis, but I'm not sure if I am ready to talk about that or explore it on this blog.  I know I am "not myself these days," and I know "I have so much going on in my body" and I have "to be gentle with myself" and "take one day at a time"   I assure you, I am trying. 

Thanks for listening and for bearing with my dark cloud cloak and constant "Shhh" sign on my door and rejection of invitations to socialize.  I hope to return to normal or adjust to "my new normal" soon, and in the meantime I spend all of the energy I do have on the bare necessities. And getting out of bed in the morning.   

Article & Photos © Natalie Richardson