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. :]