Gift from the Sea

Twenty years or so ago, I was introduced to a book called Gift from the Sea by Anne Morrow Lindbergh. It was intended to open my eyes to the need for solitude and reflection in setting the priorities for my life.

Anne Morrow Lindbergh was the mother of the infamous kidnapped and murdered Lindbergh Baby. She was also the wife of Charles Lindbergh, of aviation fame. She lived a privileged life, but would take time for herself at the beach to re-energize. She wrote this book in 1955. In it, she talks about getting away by herself and each chapter is dedicated to a different seashell that she has found on the beach and how it relates to different aspects of women's lives and challenges.

The book is beautifully written and I have read it numerous times over the past 20 years and found something relevant each time I read it. It is not a self-help book really, but a piece of inspirational literature.

In May I will be going to Florida with my college girlfriends. We decided on Florida vs the Caribbean since the Zika virus scares me with my compromised immune system. My GF Shiela suggested Sanibel Island as she had heard of it and thought it might be a cool place to go. I had also heard of it as it is the Seashelling Capital of the World (not sure if that is proven...LOL) and I love seashells. We decided that we would go there.

I was giving some thought to the trip and remembered Anne Morrow Lindberg's book. I thought maybe I should bring copies of it for the ladies and we could do a scavenger hunt to find the shells listed in the book. I downloaded the book onto my KOBO so I could re-read it and see what shells she made reference to and determine if they were attainable in Sanibel.

There was a new intro by her son and it talked about how his mother loved to go to a little cottage on Captiva-Sanibel Island...and that is where she wrote her book. OMG...I had always assumed her beach vacation was in New England. Imagine my surprise when I discovered we were going to the same small island where she wrote her book!!

It always amazes me how small our world really is. I also believe that things happen for a reason. The universe delivers. I am convinced, more than ever, that our girls' trip to Florida is meant to be. I cannot wait to see what other joyful surprises lie in wait.

Working It Out

Exercise class went very well today. Phew! Finally left a class feeling better, rather than worse!!

As you know, I go to Wellspring Niagara for support on my cancer journey. They offer a lot of programs, and I tried a few last year and the year before, but I just wasn't ready. I joined the Cancer exercise program a few weeks ago. They have a physiotherapist and a kinesiologist who provide an exercise program on-site for 20 sessions and then at a gym for the advanced classes.

I wanted to see if exercise would help with my chemo-induced fatigue. I also needed a program that was geared to my capabilities and constraints. This program was ideal. Everyone is a cancer warrior and we are all battling weakness of some sort. Paul and Candace make sure we only do what we can and they are eager to check in after each exercise station to ensure we don't over-do it.

This is exactly what I needed. I am prone to over-doing it on a regular basis...I have not yet accepted that I cannot do the things I once did. When I feel bad, I rest, but when I feel good I push myself to the limit...then pay for it for days afterwards. I needed to start slowly and very gradually increase my activity.

My first class was a disaster. My first exercise station was a chair. I was to sit down, then stand up, then sit down again ten times. I laughed. Really?! Sit down and stand up?? So I did the first set. Yikes! It was really frickin' hard. 2 more sets. I was exhausted. Sweating and tired. OMG!!

 I was not laughing anymore.

Next was the hand bicycle. Simply put, you pedal with your hands for 3 minutes. No tension on the wheel...just round and round. More sweat. Then tears.

Big uninvited tears of frustration.

I could not believe that I had become so weak and unfit. It was a "reality check" moment. Wow! I was angry. Cancer scores another goal. You f'ing bastard...you win this round...but I will prevail!!!

I persevered. The rest of that class and the next few classes were not much better. I would leave exhausted after a short 30 minute rotation of stations involving simple, easy tasks. Bicep curls with 3 lb weights, recumbent bike for 3 minutes with no tension, sit and stand, etc. It was difficult physically but more difficult mentally. Certainly I laughed at it and joked about it, but it was a hard pill to swallow.

Today was a good day, though.This was my 4th session and it was so much better. I felt stronger and capable. More importantly, I was mentally prepared. I recognized my capability and worked within in. I felt stronger and had more energy after my work out than I did going in. This is what it is supposed to do.

Acceptance. This is my world...these are the parameters...work with it.

When I worked, I often spoke with my teams about "working within your sphere of influence". There are so many aspects of our jobs with the federal government that are frustrating and some are downright ridiculous...but if we cannot change or influence it, there is no sense fretting over it or expending energy trying to change it. I advised to identify the areas you have influence over, (like how to implement it, or how you react to it), and work within those parameters. I am finally taking my own advice. I need to identify what is within my sphere of influence and work within in.

I know I can't run a marathon tomorrow...but I can work slowly at building stamina and strength...and one day, I can run that marathon if I really want to do it. (Not a chance that I would want to...but it was a good analogy...LOL!)

Today is a good day!

Sleepy Sleepy

I had an event to go to on Saturday evening. A house-warming party for my dear friends Roselyn and Earl. They always make an effort to come see Al and I when we have an "event", even though they lived quite far away, (Uxbridge). So, when we got the invitation, I was determined that we would attend.

As I may have mentioned, Al works in Ottawa almost every other week. Every once in a while I go up to Ottawa for the week or part of the week with him. It depends on airfares, train schedules, my appointments, and whether we just need a break from each other. LOL! This weekend, though, I was planning to drive to Ottawa with him, so we just left a day earlier.

In order to have energy for the party, I did not do much during the week. I had 2 appointments and did some laundry. I also did a little shopping...but I did not go to the mall. All in all it was a pretty quiet week from an energy-exertion stand-point. I was tired all week and went to bed early Thursday and Friday nights, sleeping in quite late as well. Saturday morning I rested. Reading the paper and wrapping Roselyn and Earl's gift was the biggest chore I permitted myself.

We left and I put on our John Grisham audiobook. I love listening to books on our drive. Al is not a reader so he gets to unwittingly partake in the savoir vivre of my hobby. :) The only drawback is that I sometimes get a little sleepy after listening to the reader for an hour or so. As usual, I had a little catnap before 5:30, when we arrived at the farm where the party was taking place.

It was not a raucous affair. I walked around for about 20 minutes taking in the sights and admiring the handiwork of Roselyn and Earl on their party barn / aspiring cider pub and dance hall. (Fantastic venue for all types of parties!!) I found a comfy seat on the patio and parked my butt. I got up occasionally for a bite to eat, but for the most part I remained seated and only expended energy in chatting with their new neighbours.

We left early, around 8:00 I think, and got to our hotel in Bowmanville around 9:00. I went to bed early and slept late. (Almost too late for the 7-10 am breakfast!) I then proceeded to nap on and off all the way to Kingston. We stopped for a bio-break at the On-Route in Trenton. When I sat down in the cubicle, I rested my head in my hands. I very nearly fell asleep within those few seconds. I had visions of my husband sending someone in to check on me and finding me snoring away on the potty. OMG! That thought woke me right up!! I was still a little foggy once we were back on the road though, and I managed to dump 1/2 of my Timmies coffee on my crotch. Yup. Also on my white and navy cotton sweater. It soaked up that coffee colour like a sponge!!

When we stopped to do a little shopping at the Outlet Mall off  Division Street, I changed my top in the parking lot and put on the tunic I wore the day before. It was long enough to cover up the brownish stains on my jeans. Yikes!! But I smelt like coffee all day!! (As an aside...later that day, when we were entering our hotel room, Al accidentally spilled some of his coffee into a bag on top of my suitcase that was falling over. Guess what...yup...on my white sweater. I have it soaking, but cotton loves coffee. I may never be white and navy again!)

We went for a bite to eat before heading onward. I was so exhausted that it was difficult to raise the sandwich to my mouth. Although I did wolf it down pretty quickly. Maybe I was worried I would fall asleep before I could eat it. LOL. It does sound a little bit contradictory...but it takes a lot to come between me and my food!! In any event, we thought maybe a Starbucks would wake me up. My Pumpkin Spice Latte was delicious, but I promptly fell back asleep as almost as soon as we got back on the highway.

I woke up as we entered downtown Ottawa and as soon as we checked in I headed for the couch. I was SPENT!! I rallied for a bit for a late dinner - just an order of poutine - mmmm - and then back to the room and back on the couch. A hot shower and bed at 10-ish and then...I could not get to sleep!! OMG! I was tired but my body was just not cooperating. I finally fell asleep around midnight, but did not get up until 10:45 this morning. I am still a little fuzzy headed. I will do nothing today...save for writing this blog posting, and grabbing some lunch shortly. I have to rest up for tomorrow night. We are going out for dinner with some of Al's colleagues to bid adieu to one of his co-workers who has moved on to another position. I need to be rested and polished and full of vim and vigour for that dinner. I am glad it is not tonight. I would have a difficult time mustering up the energy. :(

(This is me after unloading the dishwasher...LOL!!!)

I hope I did not put you to sleep with this boring tale...but I wanted to share my sleepy, sleepy life with you. When I say that I am fatigued...I am not exaggerating. I really cannot function some days.

The Sleeping Beast

After my stem-cell transplant in May 2014, my cancer "beast" went to sleep. Multiple Myeloma is not a curable cancer (yet) so we do what we can to beat it down and keep it down as long as possible. When it awakens, we beat it down again...etc.

Over the last 9 months, I have been a little worried about the subtle rise in my blood protein levels. I won't get into the specifics of the blood work or the tests and what they look for, as it will put you to sleep, but just know that I use the term "protein levels" generically to cover all of the blood work I have. The "protein" is essentially the cancer in my blood. It is not dietary protein and has absolutely nothing to do with that.

Although the increases still left me in the "normal" range, the continuous rise in levels made me very nervous. Was this beast awakening from his slumber? Average first remission time is 18-24 months. I opted to take maintenance chemo - a lower dose of Revlimid daily by pill - to keep the beast knocked out for a longer period of time. My oncologist was cautiously optimistic that it would 4-5 years before I would need aggressive treatment again. So I was scared.

Remission periods are unpredictable. In the case of MM, it is very difficult to predict anything given that every person's cancer is different and reacts differently to the treatments. However, the basic rule of thumb is that your first remission period is the longest. Each one following will likely be 1/2 the length of time of the first one. Soooo....my concern was that if I was coming out of remission at the 2 year mark...my overall life expectancy....well...you do the math. I also want to stress that this is the law of averages...not carved in stone. I am hopeful that I will be one of the few folks with this disease that live for 20 years with it...but I also have to be realistic. Average life expectancy just increased from 4 to 5 years with the drug protocols they have used over the last 5 years. I do not think that I will be average...I have always been an over-achiever!! I am young (in the MM world) and otherwise very healthy. I have responded well to treatment to date. I am 100% confident that I will be alive well past the "average" life expectancy. :)

Anyway, this past week I saw both of my oncologists. We talked about my test results and about my fatigue (see previous posting). My protein levels have stabilized. They indicate that there was some action but it is not continuing to grow. Just a little blip. Last visit we talked about increasing my chemo...now we are talking about trying a little reduction to see if my energy levels come up. Phew!!

One doctor suggested a medication vacation or holiday...this means taking some time off of the meds. The other doctor cautioned me that if I did that, and then decided to go back on the Revlimid, my insurance company many not agree to finance it. What?! Revlimid is $11,000.00 a month. A MONTH! My drug plan agreed to cover 80% and the drug company is subsidizing the other 20% so I pay nothing. I could not possibly take this drug if it was not covered. I am not prepared to roll those dice. I will not come off the chemo. And it has only been 3 months since he wanted to increase the dose by half...so it is not the time to mess around with it.

When you take Rev for treatment purposes, you take it 3 weeks on and one week off. For maintenance, it is a lower dose but taken every day. Both doctors suggested trying a 3on/1off approach for a few months to see if it makes a difference. So that is what I plan to do. Just a few months and then decide to continue or revert back to a daily pill. Wish me luck!!

The added benefit to taking it 3/1 is that my risk of developing a secondary cancer is reduced as well. I was cautioned before taking this drug that it can cause development of secondary cancers -- most commonly treatable cancers, like bladder cancer, thyroid cancer, solid tumours, non-melanoma skin cancers, etc. Apparently that risk is lessened in people taking the drug on a 3/1 cycle. Yay! Winner winner chicken dinner!! An added benefit. I like free bonuses!! I'll take it! LOL!!!!!

Anyway, at the end of the day, I am very relieved that my cancer beast did not wake up. He simply rolled over and farted and went back into a sound slumber. Sleep on, you bastard, sleep on!!

Don't Poke the Bear!

* I published this on Wednesday, September 21st. I used a template from a draft I had started in August, so it shows up in my blog as being posted in August. Since I reference some timelines, I thought it wise to provide an explanation as a preface. :) Sorry for the confusion. Lesson learned!

It has been a tough couple of months. Some of it I blame on the weather. I just can't tolerate the humidity this year. I have so little energy of late...and it is really getting me down. That together with some worry about what is happening within my body, conspire to sink me into a quagmire of self-pity and depression. I say conspire...but not succeed...I have grappled with the black dog and I think I have finally got him back in his damn cage. (For those of you who are unfamiliar with "depression" lingo, this is a common metaphor.)

I am disappointed and angry and sad that I cannot do the things that I would like to do. I know that someone out there will say something like, "hey...we are all getting older and can't do what we would like to do", but I don't mean the little things...I am talking about being able to go shopping for a day, or taking a bike ride, or planning a weekend full of adventure.

When something "big" is coming up I have to plan for it. I have to rest up for it. For DAYS in advance. I also have to schedule downtime afterwards for a few DAYS to recover. This past weekend we had a wedding to attend on Saturday evening and a baby shower the following afternoon. In both cases, it was not an active event. Mostly sitting and eating and talking and laughing. Pretty innocuous. But I had to have quiet days on Thursday, Friday and Saturday morning, leave the wedding at 10ish and sleep in Sunday morning so that I could participate in these events. I then rested most of Monday and most of Tuesday. Today (Wednesday) I am still a little tired, and need to conserve energy for tomorrow as I am attending a retirement lunch. I feel like I am an 80 year old woman, not a 53 year old one.

People are always telling me how great I look. Yah, I do...I have rested up for the event that you see me at. If you could rest as much as I do, you would look great too! LOL!

I bought a bike this year with the intention of getting some exercise. Not riding 20 km or up and down hills, but just a little 5 km here and there around the neighbourhood to keep my legs strong and get a little cardio in. Well, I can't really do that - unless I simply circle the court. I never know when I will hit the wall and become overwhelmingly exhausted. I worry that if I venture too far, I won't have enough energy to be able to get back home.

It is the same with walking in the mall. Contrary to what my hubby might tell you, I don't always break the bank when I go to the mall. I like to walk around and look at things, and get some exercise in at the same time. I am now always conscious of how far away I am parked from where I am in the mall so that I can get back to my car. I take a rest on a bench at each "corner" so that I conserve my energy and increase my stamina. It is very frustrating for me.

Those of you who knew me before, know that I was very energetic. Lots of balls in the air at once. Multi-tasking, list writing, planning and organizing. Not this Linda. She can't do that anymore. Some is the fatigue and some is the change to your brain power after chemo. It is a real thing, this chemo brain...and I have an article in my blog on it specifically if you want more info. 

I am extremely grateful that I am here and able to write this article. Grateful that I wake up each day. Grateful that I have so many wonderful friends and family that care about me and are in my life. Call me selfish, but I wish I had more. I wish I still had that sharp brain and the stamina and energy to do the things I want to do.

I let this get me down this summer. I let it get to me. I don't like it when cancer wins a battle. I felt like it did this summer. But I am determined to exact revenge on this damn beast. I will put on my big girl panties and find a way to either reduce the fatigue or adapt my lifestyle to accommodate it and still accomplish what I want. Fuck you, Cancer. You may have knocked me back a little this summer, but you just poked the fucking bear!!! Look out!!! LOL!!

Feeling a little down...and a little angry...is that Downgry?

I am in a funk. Maybe even a little depressed. Just tired of being tired.

I went camping last week. We used to go every summer with the kids, then as they grew older, we went by ourselves. We had many memorable adventures there!

When my tennis elbow got so bad that I could not easily camp, we stopped going. I was then on a surgery waiting list for 2 years and was disinclined to book a site if it would mean cancelling if an OR opened up. As it turned out the year I had both elbows operated on, I also found out I had cancer...so we have not been in a long, long time.

I decided that this year I felt that I was strong enough to contribute to the camping experience. LOL. I had to curb my enthusiasm and my physical involvement. This also meant relinquishing control of the camp set-up and tear-down processes. It was difficult for me.

I realize that I am impaired by the drugs that I take and the damage they have done to my body. I realize that my family is willing to do whatever they have to to help me. But I don't want this. I am 53 not 83!!

I am angry with Cancer for stealing my energy and my ability to walk, run, bicycle, hike, and party like I used to. What is more disturbing is that this is not going to get better with time. I am having a difficult time accepting this new life.

I know that things could be so much worse...I know people who have battled and lost, and others that are so close that they can see the finish line. I am not one of those..and I am very grateful for the time I have been given. I am angry though, that I have to give up so much.

I try to be positive. I try to think of the wonderful blessings in my life and how lucky I am. I know I am. But I am still allowed to get mad. And I am.

Cancer affects all aspects of your life, and the lives of those around you. It is not fair. It is not logical. It is not discriminatory. And it fucking sucks!

End of rant!!

BTW, I had a shower, dressed up nice, did my makeup, put on a necklace and earrings and went to the mall. The guy at the Apple Store (it is called something else but they are a licensed distributor and I can't remember their name) noticed the effort. He told me that I look like summer personified. He said I look summery and happy!! Pfffttt!! LOL!!  I guess a little effort does go a long way. I did feel better. I also bought a new frying pan at the Kitchen store...retail therapy really does work!!!

I am feeling a little better tonight. A good night's sleep will do me good. The glass of Masi Ripasso is working wonders too! LOL!!

I wrote this yesterday and then had trouble with adding a picture, so I parked it. I looked at it again today and it is not my usual happy-go-lucky posting, but it really does reflect how I am feeling. I am not looking for cheer-leaders to perk me up...I just want to be honest about how it really feels. Cancer sucks, folks. Even when it is in remission.

 


I have a busy week coming up, so I am trying to stay "quiet" and "rest" as much as I can. *sigh*

I learned a lesson (again) last week while in Ottawa. Al told me to do "nothing" on Monday so that I would rest up after our weekend and have energy for the rest of the week in Ottawa. Of course, I did not listen and paid the price. The heat and humidity just did me in on my short walk from Rideau Centre to his office. I was done for the rest of the week.

It is becoming more difficult to bounce back. I am very physically tired but have trouble sleeping. I am immensely frustrated by this and yet grateful for the ability to rest in a beautiful home with a lovely backyard and pool.

When life gives you lemons and you make lemonade, it sometimes still tastes a little bitter. :]

Too busy to write...

Well, it has certainly been a while since I wrote in my blog. I have been quite busy these past several weeks.

Al and I were in Florida in late Feb/early March. When we returned, I went to Calgary for a week to help Kaila set up her new house. In early May, I went to Cuba for a week. I then took a vacation with Al to BC, Alberta and Montana in June. Upon return, my friend Lori from Florida was visiting and Al and I went to Port Elgin for the weekend.

Al is again going to be working every other week in Ottawa and I will travel up there with him from time to time. We have other adventures lined up for this summer as well. All this and the weather is hot and muggy, so my pool is just dreamy!! This is why I have not written a posting for a while. I had lots running around my head...but I just did not get them onto the blog!!

Although I am very busy, I am also being very careful. I rest as often and as much as I can and need to. Sometimes it is several hours a day for several consecutive days, and then I will have bursts of energy and will do too much for a few days...starting the cycle all over again. LOL!!! My mom and my husband are constantly reminding me to slow down...but on the days that I feel good...I want to accomplish things!! I push as hard as I can for as long as I can. :)

I find when I am busy, I don't think about my disease. Not that it consumes me when I am idle, but on a grander scale, I forget I am sick when I am busy. This is good and bad. Bad, because I tend to over-do it!! Oh well. C'est la vie!! I don't think I will change my habits just yet. I will do what I can, when I can...just in case I can't do it again.

Al and I are going camping in August. Camping. Yes...tents, dirt, bugs, camp-fire...camping. We used to take the kids every year and then after the kids grew up and before my tennis elbow issues flared up, we went as a couple. Loved it. Black sky, bright starts, rustling trees, camp-fires.

We missed a few years when my elbows were bad and I was on a waiting list for surgery. Then, in 2013, I finally had my surgeries, and Al had his heart attack and I was diagnosed with multiple myeloma. Great fucking year!!

I think I am finally strong enough to set up camp and deal with a camping lifestyle again. We decided on a week to go and I thought for sure there would be no sites available. Usually, you have to be on the internet at 0700 hrs exactly 4 months prior to the date you want to arrive in order to book a site at The Pinery in Grand Bend. I signed on...just to see. Well, after punching in the dates (4 nights), I looked for availability. There was an indication of availability in Dunes Area 4 (where we usually camped). When I clicked open the map to show the sites, only one was available. It was the same site we stayed in the last time we camped!! It was meant to be!! I booked it right away.

I may not be able to kayak on the river, or body surf for hours in Lake Huron, but I can sit by a camp-fire and toast marshmallows, lean back and take in the stars, and sleep deeply in the fresh air. I am doing it because I can. Next year, maybe I won't be able to...

Carpe Diem! Seize the Day! I don't want to have regrets. If I want to do something, experience something, see something... and it won't kill me or break the bank... I am going to do it! YOLO!!

Banish those demons!!

We all have demons. Unresolved anger, hurt, disappointment, resentment. You have to resolve them in order to live a happy life. It isn't easy, but you need to do it.

Forgiveness is hard. It does not mean that you approve or condone the behaviour that you are forgiving. It means that you acknowledge it and its impact on you and you let it go. You stop lamenting over what could have been or what should have been and accept what is. Today. Move forward.

I had an unresolved issue. It was not something someone did to me...I did something unkind to someone else many, many years ago. It haunted me. I regretted it so much, but did not see a way to let it go and move on. Many triggers reminded me of my actions throughout the years and I decided last year that I had to forgive myself. It was very difficult and very scary, but I opened up a dialogue with the person I hurt and acknowledged that I knew what I had done and the impact it likely had. I acknowledged that I was immature and selfish to say the things I did. I said I was sincerely sorry.

At that point, I resolved the issue for myself. I could move on. I put down the 34 years of guilt I was carrying around. What a relief. I was also very happy and very fortunate to have the person respond that they understood and wanted to move forward as well. That was an added bonus.

The act of forgiving yourself frees you from reliving that moment again and again. It is over, done with, air is cleared. Whether the other person forgives you or not, if you have done all you can to atone, then you need to move on.

There are other pieces of baggage I carried around as well. People who disappointed me. People I felt had abandoned me. I waited many, many years to hear them say they acknowledged how they hurt me...but it never came. I was always prepared to forgive them, had they asked. Then I realized that they did not need to ask me to forgive them. I could just do it. It does not relieve their own guilt, but it lets me move on. I tell them through my thoughts that I have let it go, and the burden is theirs to carry, not mine. Phew! What a relief that is. Again, a huge burden that we carry with us that we can let go.

Do yourself a favour. Atone for your wrongs and forgive those who have wronged you. Don't let them hurt you again, but move forward from this day on.

The lighter we are, the higher we can fly.

Second Wind

I got over my little tantrum...LOL!! Caught my second wind...or at this point it is likely by 200th wind. It was overwhelming to have to deal with so many illnesses and calamities all at once. I don't know if it is our age...50 something...and now everyone's parents are ailing and we are also falling apart...or if it is the internet and the speed with which we hear about what is happening and the sheer volume of info.

25 years ago, we only knew what we were told. People kept illness a secret. Newspapers reported on significant deaths and Joe Blow was only mentioned in the local paper.

We are in touch with so many people through social media that we know immediately what everyone else is going through. It is good and bad. Personally, I would not change a thing. It just sucks when a lot is happening at once.

I have a nice vacation coming up. Spending a week with my daughter and with my dear friend Shiela is something I really need.

Kaila and I can be like oil and water...much like my own mom and I. The perils of the interaction of two strong-willed women. :) Again, I would not change a thing. Kaila and I will have some quality time together and although I have seen more of her this year than her brother who lives 40 minutes away, it is very nice to have this opportunity.

Shiela was my room-mate for one semester in college. I could not find a place to rent, so she invited me to share her basement apartment. Well...that was an education!! I learned to love Backgammon, sang some Scottish ditties, listened to lots of George Jones country songs, and got hooked on the Young and the Restless.

I also learned to appreciate heat. We could see our breath in that apartment!! Shiela became a wonderful friend and although we drifted apart for several years, we have always been there for each other when needed. We have seen each other a handful of times in the past 20 years so I am very excited to spend a week catching up. I am sure there will be some Scottish ditties sung before the end of the week!!

My Auntie Mary had a canary

Up the leg of her drawers

It would'na come doon for half a croon

Or a note from Santy Claus

 

Auntie Mary had a canary
Up the leg of her drawers
When she farted it departed
To a round of applause

Well, I just wanted to check in and let you know how much I appreciate the support and love you have sent my way. We all need a little boost now and then, and you never fail me when I really need it. Thank you. I love you.

Linda xo

Hey Cancer....FUCK YOU!

It has been a tough few weeks.

There are so many people in my life that are having a tough time. It is not fair. Cancer is not fair. Good people should not suffer. Assholes and criminals live their lives illness-free and good people are dealing with crap they should not have to. Arggghhhh!

There are a lot of things going on that I can't talk about here because of confidentiality requests. I can tell you that I have a network of friends and fellow cancer warriors that are very dear to me. We rally each other when we are down. We celebrate small victories and console each other when something goes bad. We support each other. We rely on each other. It is uplifting, empowering, and heart-warming. It is also devastating when one of us loses the battle.

It broke my heart to lose Pat Killingsworth earlier this year. He was a source of inspiration every single day. Throughout his last battle, he posted a short note on FB, almost every day, to say how he was doing and then still posted larger articles on his blog when he could. He always responded to my posts. He fought so damn hard. I miss him.

You might think it a little crazy that I connect so deeply to people I have not seen for many years, or some that I have never even met in person. It is not unlike the sense of loss people felt this past week when they learned of Prince's death...or Robin Williams...or Princess Di. You never met them or knew them, but you felt saddened by their passing because they brought something to your life and you felt a connection.

My cancer warrior friends are like that. We are there for each other. A wonderful man that I met through Wellspring Niagara lost his battle last week. He fought hard and defied so many odds. I met him a few times and heard him speak at the Wellspring Gala last November. He was so inspiring. He had a positive spirit and a desire to live. Now he is gone.

I have another friend who has been fighting breast cancer for a few years now. She has done everything she needed to do...eating healthy, exercising, staying positive, chemo, radiation, surgery...preventative surgeries...test after test...and Bam! It shows up again, somewhere else. Enough! It is not fair. She is a beautiful, strong, and vibrant wife, mother and friend. Fuck off, Cancer. Fuck OFF!

Another close friend is seeing the doctor today about the surgery he had a few weeks ago to remove a tumour from his kidney. My friend in Turkey with lymphoma is coming back to Canada to continue her treatment...she is still not ready for her stem cell transplant due to new lesions that need to be treated first. I have other friends who are in hospital right now fighting non-cancer related battles. One is not likely to make it, or at the very least will lose his legs, and the other has been in the ICU since April 15th.

I am sad. I am frustrated. I am scared. Can we slow down time? Can we pause the program for a bit? I am tired and I need a little breather.

I will be okay. I will find my strength again. That is what we do. We let the sadness wash over us for a while, then we take that deep, cleansing breath and stand up, ready to right the next battle. Sigh. Writing this is my cue to take that breath.

Breathe in....hold...out! Done. Ready. Coming up swinging. Look out Cancer...my friends and I are coming for you!!

Laundry Re-Do

I did laundry on the weekend. The weather was beautiful...sunny and breezy...so I hung most of it outside to dry. Nothing smells as nice as sunshine and wind dried laundry.

This morning I was getting ready to go to my massage appointment and was looking for my blue sweater. I remember hanging it on the back of the chair outside to dry. I remember folding it and putting it in the basket. All the baskets in my room are emptied and contents put away. No basket by the patio doors or at the foot of the stairs...none in the laundry room. Where is my damn sweater??

Then I look outside. There on the fire table is the last basket I took off the line and neatly folded, before I got side-tracked with something else to do. I never brought it in. Not such a big deal...except for the fact that it poured rain and hailed all night long and it was still pouring. OMG!


So now I am re-drying everything in the dryer today. It won't have the outdoorsy smell, but it will still smell nice. I switched to wool dryer balls and essential oils. :) Love lemongrass and the DoTerra Balance blend. And I am doing my part for the environment.




Not sure if my forgetfulness is age, menopause, chemo brain or just a dumb ass move...but it sucks. :)

Why do I write this blog?

I love writing my blog. It is therapeutic for me. A time to collect and analyze my thoughts. Dig deep within to pull out how I really feel. Using my creativity to pull it all together so that it makes sense and it is worth reading. There is another, bigger reason I want to write it. To help others.

Cancer is a really shitty disease. It is a black hole that sucks you, your spouse, your kids, your parents and eventually all your friends and relatives into it. It insinuates itself into every aspect of your life. It is always in the back of your mind. Tick tock, tick tock. Some of the crazy thoughts that come to you are ones that you really can't share with your closest friends or family members. Unless they have been diagnosed with a serious illness like this, they really can't understand how you feel.

When I found out I had MGUS (a benign blood disorder that sometimes develops into a blood cancer like Multiple Myeloma, Lymphoma, or Leukemia), I was scared. My family doctor told me that there was no sense worrying about it until and if it turned into cancer. My parents said the same thing. Many of my friends voiced the same opinion. I got it. I knew that I should not worry until I really needed to worry...but what you know intellectually and what happens emotionally are two different things.

Have you ever had a call-back from a medical test? Have you ever found a lump in your breast, or had a crushing pain in your chest... and your body goes cold. Your heart is in your throat. You bowels turn to water. You get scared. What if someone told you not to worry until you know for sure it is cancer or a heart attack? Would that be helpful? Not likely.

For me it was a year of blood tests every 3 months. Watching my IGG (Immunoglobulin - Gamma) levels rise each time. Knowing that the steady and predicable rate of increase was likely going to result in a cancer diagnosis. Not being able to do anything, but wait and see. Not being able to discuss the growing fear and dread with anyone, (other than my husband, thank god for him, because it would upset them, or elicit a response about how I am worrying for no reason. Better still, to be told that by worrying or talking about it, I am willing it to happen. I kid you not. More than one person.

Turning to the internet for information and answers led me to a few articles and web-sites that spoke to the fears and concerns of people with MGUS. They linked to blog posts and forums where people like me could express their anxieties about watching their body turn against them while they were powerless to do anything about it. It gave me peace to know that others felt as I did and we could discuss it and talk each other off the ledge.

Once I had a diagnosis of Smouldering Myeloma, everyone rose to attention. Now it was real. SM means that your blood protein levels have risen to such a level that it is now classified as cancer, but you don't have any obvious signs of "damage" so it is still wait and see. In some cases, you could smoulder for years.  My hematologist told us that he had 2 patients that were in smouldering stage for 20 years. This was little comfort as you looked around and saw that he had floor to ceiling piles of patient files on each wall of his office, a file room that we could not see, but assumed was full, and he was likely 70+ years old.

I did not have anemia, kidney damage or failure, hyercalcemia, or obvious bone damage or pain. I had chronic neck and back problems, and I did not notice anything different in the level of pain I was used to. So we were back to wait and see.

I couldn't do it. I was an emotional wreck. My kids were in BC and Alberta, my sisters in BC and my parents a 4 hour drive away. My husband was still recovering from his heart attack and cardiac arrest earlier that year. I needed to take action. Do something. Anything.

Over the next few months I had x-rays that indicated some small lesions in my skull and that prompted a reclassification of the disease to active Multiple Myeloma. An MRI indicated lesions throughout my spine. Some "holes" in the vertebrae as large as 1 cm across. The bone marrow biopsy indicated 15% cancerous marrow. Time to rally the troops! Time for ACTION!

In those months from MGUS to finally starting chemotherapy, (19 months), I needed support. I needed to have someone who understood what I was going through. I needed a safe place to share my thoughts and talk to, and listen to others. The various forums and blog posts that I found provided that. As did Wellspring Niagara (I have written about them previously). It became important to me to "give back" to this community and to others who did not know where to turn. Writing was good for my psyche, but if even one person benefited from one of my articles, then it was a win-win!

I have heard from many of you, over the last few years, that you have gotten something out of my blog. A laugh, or a cry. A moan or an eye-roll. But more importantly, I have touched people with cancer and in other cases, family members or friends trying to deal with cancer of a loved one. I have given some clarity to the emotional roller-coaster ride this is. I have given some education about Multiple Myeloma -- a cancer I had never heard of before I got it.

I keep writing for me. But I also keep writing for you and the future readers of this blog. If my writing can help someone that has cancer, or is supporting a loved one who is fighting, then I am happy. I have accomplished something good!

Thank you for reading. Thank you for supporting me in this fight. Thank you.

Don't worry, be happy!

I few months ago I was afraid that my cancer was progressing. I was very, very tired and had been sick with colds, sinusitis, laryngitis and stomach flu for weeks on end. I was reluctant to make plans for the coming year...just in case.

My check ups showed that I was still in remission. The fatigue and illness were just residual and ongoing effects of the poisons I had subjected my body to over the past 2 years...and still do on a daily basis. Phew!

Since then I have been busy getting on with my life. Al and I are leaving soon for a 2.5 week vacation in Florida. When we get back, I am flying to Calgary to help my daughter set up her new house. In May, I am going to Cuba with my daughter and her friends and my dear friend, Shiela. In June, Al and I are gong to Vancouver, Squamish, and Calgary. In October, I am going to Toronto to see the Adele concert with my friends Carm, Shiela and Anne.

Who knows what other adventures I will embark on? I am living my life. I may have days on these adventures when I can only laze around and sleep or read. And that is okay! As long as there is life to live, I am going to live it...Really LIVE IT!!

YeeHaw!!

I hear the train a comin'...

It is so frustrating to slowly lose one's mind...LOL! I haven't lost mine, yet, but I think I have a better understanding of how someone with early stage dementia or Alzheimer's feels. I forget things...sometimes mid-sentence or sometimes it is more significant than that.

Oftentimes, people say...oh ya...that happens to me all the time. It is just part of getting older, or it is part of menopause. Yadda yadda yadda. I agree, some of my forgetfulness is indeed attributable to those things. But it is not the same. I am not telling you this to garner your sympathy. I am telling you this so that you can understand what people with chemo brain are really going through.

I will give you an example. I (finally) got my papers back from the doctor for my CPP Disability application. I was reading through the doctors' progress reports and on the latest one from Dr. H, it said that I was having an MRI. I immediately went into panic mode...heart pumping, sick feeling in my gut, mind racing..."OMG...did I miss my MRI appointment?? Was it yesterday? It was a Thursday and it was a week that Al was in Ottawa....okay..so not this week! Next week?!"  I scurried over to the calendar...nothing for the month of February related to an MRI. I scolded myself for not remembering to put it on the calendar. How could I be so stupid! OMG...when is it?? I checked my printout of doctor's appointments. Nothing regarding an MRI. I checked my day planner...nothing in February. WTF?!? I sat down and tried to calm my nerves and really think this through. I would not have forgotten to write it down somewhere. I would not have missed such an important appointment. Think...think...think... Suddenly, I remembered. I went 2 weeks ago. In January. I ALREADY HAD MY MRI.

This is not typical menopause or 53 year old behaviour. It is chemo brain. It is a compilation of reaction to the myriad of poisons I have swallowed, injected and infused over the past 2 years. It is the underlying dread and stress that comes along with an incurable disease. It is the exhausted body and brain of someone who has been on the brink of death and "rebooted". And it sucks!!!

I recognize it for what it is, though. I joke about it. I scold myself and try to put processes in place to help myself. I openly acknowledge that I cannot remember things.

I do not understand why people with early onset dementia and Alzheimer's do not acknowledge it. They know what is going on, just as I do. They know that they are forgetting things that they should not forget. They know when they find the Kleenex in the fridge that they put it there. Why do they fight so hard to deny it? Why do they argue with their loved ones, who only want to help them, that there is nothing wrong? There are medications, supplements, brain exercises that can help them...yet they refuse to admit they have a problem. Even in the face of irrefutable evidence, they claim it is a conspiracy. OMG! I really don't understand. Is there still such a stigma around mental disorders that people would rather burn down their house, after forgetting the stove is on, than asking their doctor for some help?? I just don't get it!

At least my family and friends know that if I ask them a question that they just answered 3 minutes ago, it is not that I was not interested or engaged in the conversation. I can tell by the look on their face that I said something strange, so I will ask..."You already told me, didn't you?". And then we laugh...and they tell me again.

We were playing cards with my son and his girlfriend a few nights ago. I kept playing the wrong cards. We were playing UNO. As Mark - or maybe it was Al - said, the game is for 8 year olds...and we laughed. We laughed each time I messed up. No judgement. No hurt feelings. No fear of being put into a home somewhere. We laughed.

When you are dealt with a challenge in your life, you cannot change the situation in many cases, but you have the ability to change how you react to it. I choose to look for the silver lining. I choose to look for the funny side of it. I choose to write about it so that others will also understand.

I choose to be vocal about my journey so that it might give others the courage to be open about their own challenges. Acknowledge it. Own it. It gives you back the power.

The train is leaving the station. You can let it go without you, and be alone. You can lay down in front of it and just get it over with once and for all. Or you can jump on board and start a party! JUMP ON BOARD!!! The train is leaving anyway. :)
 

All magic comes with a price, dearie!

I had a check up today. It was the first time I was nervous about what they would tell me. I have been in remission since my stem cell transplant in May, 2014. Lately I have been so very tired all the time and I was worried that this might mean that my cancer beast had awakened.

I worried for no reason. All is good in remission-land! The fatigue is caused by the maintenance chemo drug that I take to keep me in remission longer. I guess I thought that it would get better in time, not worse. <sigh> I have written in previous posts that there is a price to be paid for cancer survival. As Rumpelstiltskin says in the TV series Once Upon a  Time, "Magic comes with a price!" 

Contrary to what some people think, there is a lot of work going on in cancer research. New treatment protocols are being approved all the time. They are releasing them much sooner than in the past. No more are they taking 10 years to fully research long term effects before allowing them into mainstream use. This is a blessing and a curse.

The blessing is that there are drugs that can help right now...and you feel as though you are actually doing something to battle the beast. For those who have relapsed and especially those that are refractory (not responding to therapy) the new drugs offer hope.

The curse part of it is that doctors don't know the long term effects. They can make educated guesses and provide this info to their patients, but ultimately, it is up to the patient to make a decision on their treatment based on very little information. It was this way with my decision to avail myself of Revlimid for maintenance therapy.

Studies have shown that Revlimid will prolong the remission period for Multiple Myeloma patients after stem cell transplant. There is not enough evidence yet to conclude that it will prolong the overall life expectancy, however. There are many possible side effects to this drug, and each patient reacts differently. The decision is left to the patient as to whether they wish to take Rev, and endure the side effects, and increase their "average" remission period from 2 years to 4 or 5; or to forgo the maintenance therapy and live a side-effect-free life for a shorter period. In both cases, the patient goes back into treatment to induce another remission period.

The first question to my oncologist when I was considering my options was, if being on Rev for 3,4, or 5+ years would build a tolerance to the drug, rendering it ineffective when I needed it for treatment purposes. He did not know the answer. There was no answer because they have only recently begun using it for maintenance, so there is no historical data. At that time there were very few choices of treatment aside from Rev. This was a big risk to take.

In the past 6 months there have been 3 new drugs approved for use in relapsed and refractory myeloma in the US. Three!!! It is amazing! This reduces that risk for someone like me, who has chosen to take maintenance therapy.

I also considered the advances being made with immunotherapy. This is amazing stuff. They inject you with a virus or disease -- like common cold, or measles, or polio -- that has been modified to attach itself to the cancer cells. Your immune system will then attack it and kill it. (This is a simplified explanation...for more info just google it.) It will take years to fine-tune this approach and if maintenance therapy can give me several more years, then it gives me hope for a cure within my lifetime! Well worth the risk.

This brings me to the "cost" of this miracle therapy. The side effects have been presented to you in previous blog posts, so I won't belabor it here. The biggest culprit for me is the fatigue. I am so, so tired. I will do 30-60 minutes of housework and then have wave of nausea come over me which is my body's way of saying "whoa!!" and I have to rest. Usually this means an hour of lying down and maybe a nap. This is in addition to the naps and rest periods I already have to take each day.

Is it worth it? Not being able to work, not being dependable or predictable when making plans, unable to do the things I really want to do, feeling lazy. Dealing with pain of peripheral neuropathy every day. Becoming confused and forgetting things or not being able to gather my thoughts sometimes. Is it worth it? YES!


YES IT IS! I may not be at the top of my game, but I feel as though I am fighting this beast with all the weapons available to me. If I can keep it down until the cavalry arrive, then I will be victorious in the end. It is worth it. From time to time I might get frustrated, and a little depressed, about the quality adjustment...but I am entitled. At the end of the day, I can function. I can fulfill my duties as a Mom, Daughter, Sister, Wife, Friend, and Pain-in-the-Ass (to some)! My new normal may not be all I had hoped it would be, but I can live with it. The price of this magic is worth it!