PAIN

As most know, I am a cancer patient. This brings with it various other ailments. But what some don’t know is that I also have pain in my arms (not exactly sure what from, *specialist* appointment is in November) that is sometimes just in my arms, sometimes goes down to my hands and into my hands.  When its really special, the pain will travel from shoulders/back (sometimes even neck) down my arm, through the elbow (where it is usually the worst) down the lower arm (where it feels like my arm has been smashed in a car door) into my hands and even my fingers!

I also suffer from migraine headaches, but I am so used to them, I can often ignore them. When I get a migraine I will have a ‘minor’ headache for 3-4 days, Tylenol and such won’t help it, then it will *blossom* into the migraine.

From my chemotherapy I get random stabbing pains in my arms, legs, sides. Since my first lung surgery I will get an odd pain, that to me feels like a serrated knife running along my one rib, like someone is trying to remove it. that pain is random, lasting only seconds, but can come every few minutes, to every few hours; continuously for hours, all day or once every few months!

Right now, I have the arm/shoulder/hand pain on the left the arm/hand pain on the right, a migraine, my toes hurt for some reason, almost every muscle in my body aches, I also have hot flashes. Oh, and to top it off, I am having dizzy spells.

I have no pain medications right now, don’t know what to do about the dizzy spells, not much can be done about the hot flashes … I just want to dig a hole and crawl into it. I want to hide from the world and tell everyone to leave me alone.

Well, that was my rant. I am going to go to bed now… yes, it is only 9:15 am, and I only got out of bed at 8 am, but what else can I do, when I am in pain like this?

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It’s MY journey

Sometimes I feel so bitter about people who show an outpouring of emotion in relation to my cancer journey.

Don’t get me wrong, I appreciate the well wishers and nice thoughts and comments from everyone… but what bothers me is the people who get so distressed, crying any carrying on, because they are so sorry for what I have to go through. BUT these are the people who generally don’t talk to me, don’t know what my daily life is like, and they really have no clue what my cancer life is like.
I don’t understand how they can be so overly emotional about something they don’t know about. I suppose these are the same people who cry over celebrity drama. They have no idea what that person is actually feeling, they don’t even KNOW that person… how can they have such a personally emotional reaction to a stranger’s life?

It also makes me bitter because you don’t see these people very often, you know distant family that you might see once a year. It’s not because they live across the country, its not because they don’t have your email, phone number or are unable to obtain these… its because you are not a part of their daily life, and that’s nothing out of the ordinary.
I am not bitter about not being a part of their lives… its just the way it is. Not that I refuse to be part of their lives, its just how it has happened. (I am sure there are so many reasons that we could pick at, but they don’t really matter, and that’s not what this blog post is about).
Now, these family members, when you see them at a reunion, wedding, funeral, etc see that I am still sick, and gush about how sorry they are, they are so sad for me, they cry whenever they think about how much I have to go through… blah, blah, blah!
Well, excuse me for not believing your sincerity… In my opinion, if you really did care, you might call, you might email, on a regular day… just to say “hi, how are you”… you know what… THAT simple action makes me realize that ‘hey, they do know I exist!’  I really appreciate acknowledgment when I’m not in suffering mode…

Then these people, along with their crying and gushing will almost always say “If there’s anything I can do for you… ” WELL, yea, you know what? Call me! Ask how I’m doing! Send me and email! THAT is what you can do for me! Let me know that you actually care! not that you only care when I’m right in front of you.

I am a fairly independent person, so I do things on my own, even when I’m sick. I walk my dog, even when I feel like shit; I clean the cat litter, even when I feel like shit; I do my laundry & dishes & cook, even when I feel like shit. These are things I could even get a volunteer to come in to help with, because of my health & financial situation, I qualify for these… but I do these things myself. So, I don’t need family to offer to help (they can’t actually come and help anyway — and I’m sure they wouldn’t even if I lived 2 blocks away)… but the offer of an occasional phone call or email to see how I’m doing would be GREATLY appreciated!

I have more online friends who know me and my journey than I have real life friends and family who know what I’m going through… that is sad.
There are people across the USA, who I will NEVER meet, who I only know as a little thumbnail picture, who I feel more support from.

time to go BALD

OK, So here I am again, at the end of the 1st round of this particular Chemotherapy Regime. This regime is called COPP (cyclophosphamide, oncovin, procarbazine and prednisone).It is an older regime used for Hodgkin’s Lymphoma. This is the first time I am doing this one. I have done various others… some of which were study regimes.
Last night, I took my elastic out of my hair, as I normally do to get ready for bed. As I did this, a fair amount of hair came with the elastic. I started stroking my hair, not running my fingers through it, just stroking it… and more hair was coming out. More and more hair, just by stroking my hair. When I ran my fingers through my hair there was that much more coming out… I ended up with a handful of hair, before I stopped. I am quite sure that I could have gone on for so much longer, continually pulling hair out, with little to no effort.
This morning, I was pushing my hair back from my face, as usual, to put it back into the elastic… AGAIN, I come away with a lot of hair… It kept coming out… I created a pile of hair that was larger than the little packet of tea cookies that I get from the volunteers when I’m in for my chemo.

I have asked Anthony to pick up a clipper set, so that I can shave my head this evening. I am hoping that my hair is long enough that I can donate it to the Locks of Love (or other such program). I will be putting an elastic in my hair (pony tail), then clipping as close to the scalp as possible, to make use of as much of the hair as possible… it takes a LOT of hair to make one wig.

I do not need, require or want a wig, but I understand that it is a very emotional thing for others. THIS is why I donate the hair that I have… and hey, if I’m losing it, I might as well make use of it!

I will update this post either this evening or tomorrow, with pictures of the before and after…. stay tuned….

Wrapping up our visit

My daughter arrived in Canada (my kids live with their dad in Kansas) on June 15th. My boyfriend and I picked her up from her grandma’s house. That Friday, we volunteered at the local Relay for Life, we managed to stay on our feet & working for 15 hours!
The following Saturday, we went to the Toronto zoo with my sister, niece & mom. It was a rainy day, but it was a good day. We had a great time, lots of pictures taken.

I have been off work (as some know) for almost 4 years, with my Hodgkin’s Lymphoma. I am on my 3rd bout of cancer in this time. The first time was in 2001; remission until 2006… and here I am, still fighting.
In this time, I have been doing a lot of crocheting. I have given most of these items away as gifts to friends & family. I have donated a lot to various groups as well; some to raise money for Breast Cancer Research, some to help the less fortunate, some to help abandoned cats.

My daughter loves to do arts & crafts. I have a large plastic bin labeled “Craft Supplies“, which she has kept handy in the living room, and has made various crafts. She has used paint, yarn, paper, pencils, canvas, among so many other mediums. I have some of her work hanging in my apartment, from years past, I have used the small hallway leading to her room (which is the craft room, when she’s not here), to display her work.

She is one of my greatest fans. I appreciate the support she shows me. She is also a great caregiver. When I am going through my treatments — and even when I’m not — she keeps an eye on me. She makes sure I’m taking any medications I need; she gets things for me, when I haven’t got the energy. She is still a teenager, and will moan and groan when I ask her to pick up her clothes or put away the dishes; but that is when I’m feeling OK.

This is the end of our visit. She heads back to Kansas August 4th, and will be spending the prior week with extended family. This is when I usually get rather depressed. But this time, I think it won’t bother me as much, because I will be meeting my daughter down there on the 4th. My son didn’t come up this summer, because he wanted to spend more time with his girlfriend, and he was also taking Diver’s Ed. So I get to go down there to spend a week with them.

My kids are what keep me positive in my life, even though I have been off work for almost 4 years (living on a tight budget), I have been battling this cancer for the past 4 years (not including the initial diagnosis), I live alone in a basement apartment, I only get to see the kids twice a year. Things in my life aren’t ideal, but I have learned to make the best of what I have, and appreciate the little things.

Relay #2 of the year

OK, last night, my daughter (T) and I attended and volunteered at Relay for Life. This was my 2nd Relay event of the year, 1st for T.

We arrived, officially, at 1:15pm. Our first task was to assist in setting up the Food & Beverage tent. We got that completed pretty quickly. We did have to wait on the arrival of a few items to really complete the job, but for what we had on site, the job was completed quickly. Then we (along with about 6 other volunteers) rested, while we waited for the arrival of the remainder of the items to set them up.
T’s next job was from 4pm to 7pm to be taking pictures of the Relay teams and various things… Things seemed to be running behind schedule, so she sat with me for most of that time.
I was off duty from Food tent at 5pm. My next job wasn’t until 8:45pm, but we (a couple of us volunteers) re-arranged schedules and I started around 6pm, was selling food & beverage tickets.
T’s next job was from 7pm to 10pm, helping in the Smart Shop tent. They did not need her right away, so she kept going back to see if they had anything for her to do. They eventually found jobs for her, and she was there until about 9:45pm.

From there, we both went back to the Food Tent, and started on the soup & hot water for tea; same job we did last year… Then we had to add in popping popcorn! We were on a roll and were belting out instructions for other volunteers… At about 3am, we decided that if we were to continue, we needed chocolate; she & I went on a chocolate run. It took a bit to find a store open at 3am… we finally stopped at a gas station, then decided that since we weren’t too far from the 24hr grocery store that we would run over there and buy some hot chocolate, since someone seemed to forget that for this year’s food tent.

I bought 6 boxes of 10 envelopes of hot chocolate, and we went back to Relay and within 10 minutes… there was a swarm of people wanting hot chocolate. Apparently, they could SMELL it, when we made ours. We felt good about providing that for the people who don’t drink tea or coffee…

BUT at that point, T decided she was done for the night… so we signed out, piled ourselves into the car, drove home… shower, fresh jammies and then it was time to fall into the bed to drift off….. BUT the drifting part didn’t seem to want to come so easily. So we talked and laughed about Relay. We eventually drifted off, but that wasn’t until about 5am, after I put a pillow in the window to block the rising run….

Here I am now, at 1pm, and T is still sleeping… My body aches all over, but I feel good about the work we did. Of course, we will do it again, next year.

Can’t wait for the email, telling us how much we raised at last night’s event!

Inspiration? I don’t think so, but what do I know.

I had a conversation the other day with the ex-Volunteer Coordinator at the local Canadian Cancer Society office, she told me that I am an inspiration. I feel awkward when people tell me that, because I don’t see the things that I do as anything special. I am a stubborn person, and I rather smile than frown. To me, this seems logical.
She explained to me that for her, seeing me giving back (through my volunteer work) through being sick & doing my Chemo, she re-evaluates the difficulties in her own life that are so much less, than mine. Again, this makes me feel awkward, because, yes, I have cancer, but it isn’t a difficult cancer (in my opinion). I have met SO many people who have had worse cancers than mine, and I can understand when they are depressed or down, to me, I feel like I’m whining about nothing, in comparison, when I do whine and complain.

I feel like I have something to live up to, when people tell me that I am an inspiration or that I am an “amazing woman”. I don’t think I am, I’m just me. I know so many others who deserve the “title” of Inspirational or Amazing. I feel uncomfortable & awkward when people come to me saying these things, but I have learned to graciously say “Thank you”, because I realized that they sometimes need someone else to look at, to compare their problems to, in order to keep them in perspective.

I think everyone has such varying degrees of difficulty in their lives, and as they say, God does not give us more than we can handle. I am not an overly religious person, but I have my beliefs, and they do me well ☺

A couple years ago, I heard the quote from Joan of Arc: “It was for this that I was born!” I believe that we all have a reason for being born, no matter how small or extravagant our purpose. We may go our entire lives never knowing our “reason for being”… but that doesn’t mean we have no reason. Our reason may only be to slightly assist someone else with their purpose, and that is more important than we’ll ever know. The significance of our being may not be made known until years after we no longer exist, but make no mistake, your existence is important — often in more ways that any single person will ever realize.
So maybe, this is for what I was born

Learning Experience

I participated in a craft sale yesterday. Sales, for me, were just as bad as the first one. Obviously, only my stuffed toys sell. Which is a good thing & a bad thing.

Good thing because I can make toys & I enjoy making them! I love the response I get from people who see them.
Bad thing because it hurts my hands to make the tight stitches that work best for the toys…

I have a couple little ‘treasure’ type boxes, that I am thinking of painting to look like ‘old school’ toy boxes, to use for displaying the stuffed toys.

On the up side, I did have one woman come over and tell me I should be selling my toys for more than I am. Personally, I agree, BUT the problem is convincing people who don’t make these things, that my time & effort is worth more than the machine created toys they buy from Walmart…. oh well… Going to work on some toys, and later the toy boxes…

I’ve got a busy month and a half coming up… I’m volunteering at two different Relay for Life events; I have meetings for them, I am volunteering with the Cancer Society, calling other volunteers to confirm their time/assignment.
I have a few appointments for tests & consultation with my oncologist… at which time, we will be deciding on my next possible treatments.

This is the entry that won an Energizer Prize Pack

Last fall, I got a call telling me that I won an Energizer® Prize Pack, for something I wrote as an entry to a contest benefiting Canadian Cancer Society, sponsored by Energizer®
I was thrilled to win because a donation to the Canadian Cancer Society was made in my name, and my story was to be published in a newsletter. Then I learned that I was to also receive the Prize Pack! The Prize pack came in handy to help with Christmas gifts.
Well, here is my entry:

“I have experienced Hodgkin’s lymphoma 3 times! I may possibly be facing a fourth time. I say “experience” because fighting and battling are such harsh words. I believe that my experience has added to my life. I am more patient. I find joy in the simplest things and try to smile more and try to help others smile more! I have taken my time since my second experience to start crocheting again. I crochet gifts for friends and family as well as items to be sold to raise money for breast cancer research. I have also made random gifts to give to people, who just look like they need something to smile about. I love to help others and do so in my own small ways. I am too lazy to walk and I am a poor fundraiser so I crochet and donate those items. I recently volunteered for the first time at Relay For Life and this year my daughter and I were there for 14 hours! We loved almost every minute. It was a bit of a bummer when we had to head indoors due to a thunder and lightning storm. I do not allow my cancer to control my life. It does control my energy level, my ability to fight off a cold and other such things, but that doesn’t mean it controls ME. When I have the energy to do things, I do what I can. After recuperating for a couple days, my daughter and I plan to visit the zoo, which will call for another day or two of recuperating but it will be worth every minute. Because I spend my recuperating time online, finding patterns to crochet and crocheting various gifts for friends and family. YES, we have cancer… but we’re LIVING with cancer… so let’s LIVE!”

Who Am I?

I feel as though I am an almost ‘whole’ person. I feel that I know who I am, and I love who I am. I know that there are so many people in this world who can not say either of those things.

People seem to flounder in their own lives, going along day by day, not learning about themselves, not knowing themselves.  I think this is because in this day and age, we are too busy. Things have been invented and created to make things in our lives easier, but instead of using these tools to enhance our lives, we use them to fill our lives with more stress and chaos. Twenty years ago, no one would have thought that we would have to tell people NOT to talk on the phone while they are driving or crossing a street! This convenience has made us more connected with others around us, and possibly taken us further away from ourselves.
People don’t have the time to be deep in thought or to allow their thoughts to wander. Well, at least not the people who (no offense to anyone, really) have enough intelligence to form meaningful thoughts. I mean that the more intelligent people are doing some fascinating work for others, to make money, to improve the lives of the population… this doesn’t leave much time to concentrate on themselves. The little down time they have they often worry about family, work, money, etc.

Over the past 3 years, I have had extensive time on my hands, due to my cancer and being off work. This has given me A LOT of time to think. This has also given me the time to measure my words, to not make so many snap judgments, to thoroughly think about various problems (either mine or those of the people around me). I have also taken this time to get to know myself. I have become more in tune with my own emotions, thoughts, desires, needs.
I also had time many years ago to think about a lot of things in my life, which resulted in the decision to leave my marriage, among other decisions and realizations.
I have learned a lot about myself. I have realized things about myself that should have been obvious to me, but were not, because I didn’t look at myself the way I look at others, or that others look at me. We don’t often judge ourselves. When we meet a new person, we make a judgment about them; intentional or not. This is based upon our first impression of the person; some of us stick with that first impression, some of us delve a little deeper to amend the judgment made based upon that first impression.
This is what I have been doing to myself. I have been trying to delve deeper into my own thoughts, learning why I do things, how I feel about various topics and occurrences, why I react to various stimulus the way I do, how my life has effected who I am. I haven’t been trying to assess how someone else would see me, rather how I would see me, if I met me. (I hope that makes sense to people).

Some things I have learned:

  • while I may not be ‘book smart’ nor have I had the ability to be accepted to a university, I am a rather intelligent person
  • I am a creative and imaginative being
  • I am a very sexually aware person
  • I am a caring, loving, giving person; even if I don’t broadcast it so that everyone thinks of me this way (I don’t do it for the glory)
  • I am not a religious person, that does not mean I do not believe in God
  • I want to be independent and to be able to depend on someone (I like traditional roles, with room to wiggle)
  • I don’t really associate myself with any particular race, I may ‘technically’ be Caucasian, but I don’t know that that description defines me (or anyone else, for that matter)
  • I am annoyed by ignorant people, and I can be rather harsh when having to deal with an ignorant person.
  • I am bothered by people in general, but would do just about anything for people I consider a friend (I will give few people the title of friend)
  • although ignorant, I will tolerate and do my best to deal with my family, after all, they are my family.

These may be things that many people can say about themselves, but I feel they can accurately define me. I am an odd duck, and I like it that way. Yet, I feel I am also a pretty simple person. I like nice things, but that does NOT mean I am materialistic. I basically want to be comfortable, but a little struggling along the way isn’t a bad thing, I think it has made me who I am, and as I said — I like who I am.

Part of me is still confused about myself; but I will put that into another post, because I am sure not everyone will want to read it, or it may cause some tempers to flare. I really hope it does not offend anyone, or cause problems; but I feel it is something I need to talk about.

Daffodils Save Lives – Buy A Bunch!

I went to the training session tonight for my first Daffodil Days experience. I will be at Metro grocery store at Royal Windsor Drive & Southdown Road on Saturday, March 27th; from 1 – 6 pm.

I invite ANYONE in the Mississauga/Oakville area to come buy your Cancer Society Daffodils from us there, that day.

Daffodils are $7/bunch or $12 for 2 bunches! There are 10 blooms in a bunch. All funds go directly to Cancer Society, all people selling are volunteers & the daffodils are donated. We will accept straight donations as well, for those who do not want to buy flowers.

Daffodil Days are running from March 25th to March 28th; all across Canada, for those not in this immediate area. Keep an eye out for them at malls, grocery stores, etc.

I really look forward to taking part in this fund raising event. I also talked to the volunteer coordinator, briefly, about taking on a larger role for Relay for Life. I am excited to do that as well. I really enjoyed the  work I did last year at Relay for Life, and hope to participate in a more involved capacity.

I will also be cutting my hair to donate this year, for wigs for Chemo patients.
I am very excited about these things.