Tuesday, July 31, 2012

Fan Fare Please..."Induction" almost complete!

I am two days away from completing the 4 weeks of daily treatment at Lakeridge Health in Oshawa; R.S McLaughlin Cancer Centre.  This portion is referred to as "Induction".   There will be a two week period of no treatment and then the "Maintenance" portion begins.   "Maintenance refers to self injections done 3x per week just before I go to bed each of those nights.
In the beginning this didn't seem so bad but as expected it might has felt worse and worse with each week.   I suppose that's as the medication takes over my body and lets all systems know it is there!!!   I'd have to say too, the meds seem to be in charge of me right now, but when I have a small window of "feel good" I am determined to do something I want to do before the meds find out I'm feeling good and send in the "crappy"!

I feel crappy every day, some more than others but realize it could in fact be even worse!   Headaches are certainly prominent, the fatigue is the worst and my appetite isn't always available!   I don't crave chocolate either...Gaaaaahhh, that is just weird!   I can't say I really CRAVE anything, it's disheartening!  I try to eat a good lunch and breakfast because supper hour arrives and my desire for food seems to have slipped right off the radar!  When I know I just can't seem to stomach much of anything I reach for a BOOST on ice!   The only chocolate I really dig right now!
I am so tired and have the odd noticeable but thankfully brief bouts with feeling down, and have in fact spoken with a social worker at the hospital.  They have every aspect of your treatment covered and someone to help with anything that might come up.   It's a very well run facility and as a friend of mine commented today they are so caring.   She was admiring the way one of the volunteers patted my legs and tucked my feet beneath

I really do hope the maintenance portion of the treatments are not quite so bad, and look forward to the two weeks between induction and maintenance in the hopes that I will feel a little bit of "normal" during that time!?  It's certainly been a very different summer!

 I have just felt so crummy...crappy!   "I feel crappy", the most overstated phrase I use lately!   Well it's 10:00 p.m., way past my general bedtime lately and I have an early appointment for a follow up with my surgeon tomorrow morning.  I sure don't want to look tired when I see him in the morning  ; ]!    After that, off to treatment in the afternoon!   Oh such fun this summer!

Good night!  xo

Saturday, July 28, 2012

'No Cancer' is the best cancer

Education is the key to eliminating both ignorance and insensitivity.
"Melanoma is the best cancer if you're going to get cancer, right?"; a woman suggested to me recently.
Not!...ask someone with cancer if they feel like they got the " best cancer!

Sunday, July 22, 2012

Boston Calling...giving up would be even harder at this point!

Update...Chris continues to hope to make it to Boston Fashion Week, but further bad luck befalls him, but he will not give up.   A friend of his has developed a site where anyone wishing to may donate toward the entrants fee for the big event.   It costs 2200 for him to partake and he's struggling at the best of days of recent, so any amount you may be able to offer will be most helpful and greatly appreciated!  No pressure here, just excited for him to realize a brand new course of success in finding doors open to him!
Please spread the word!!!!

Feeling unexpectedly good...don't tell Crappulous!

Hey!  I just wanted to share that I have (almost) had two full days of actually feeling pretty good! I think Crappulousness has taken a mini vacation or can't find me in my disguise beneath my large brimmed hat and behind my dark shades!!   I haven't felt this good in at least two weeks!   Shhhh, we don't want Crappulous to hear!    We do however return for regular treatment tomorrow morning so I have to take this for all it's worth!  
I do hope this will be what I feel a little more of once injections begin, knowing they are a lesser dose and only every other day three times a week.

Either way I greatly appreciate a little reprieve from feeling so totally run down!   Yay!   I almost feel like me again...like, "normal", whatever that was!
I'm so enjoying the beautiful breezy afternoon and penning letters with quill and ink.  One such letter to our son in Korea, he's sure to get a kick out of the quill penned letter, just as he would write!

Well, I must get back to enjoying this strange but wonderful "feel good" bestowed upon me! xo

Saturday, July 21, 2012

Crappulousness and the pursuit of happy thoughts!

...It's Friday again!   Friday means a very early morning at LHH beginning with blood work, then an 8:30 treatment time which takes about an hour and a half and then a visit with our friendly oncologist.   The morning rolls along well until it comes to the appointment time with our oncologist.   Last week appointments were backed up and again this week, but even more so!   Our appointment was for 10:40 a.m, I was called in at about 11:30 and saw the doctor at 11:50 and was done at noon.   A very long morning.  My Mom had accompanied me Friday and we both enjoyed talking with the nurse in Chemo, they are all wonderful.   I've been writing down each of their names which helps in remembering each of them and being able to call them by name when I see them in the Chemo centre.   We also enjoyed talking with another lady who is just one week ahead of me in the same course of treatment.   We are fast becoming well acquainted.

Every Friday feels the same, with one exception this time, in admitting to feeling a sense of "down", yes, some measure of depression.   I prefer though at this point to refer to it as a realization that "crappy" is just the way it's going to be from here on.   My ESAS; Edmonton Self Assessment Survey, will reflect this new admission and I know they; nurses/doctor, will be keeping track of this.  There is no denying that one has a general feeling of complete "crappiness" or better yet as a friend referred to it, "crappulous(ness)"!   My new favourite word.    Thursday I found myself randomly consumed with a feeling of great woe, tearing up and wondering if I could actually recall how it feels to actually feel "happy" for any length of time at all.    I do have moments of laughter, and try to find humour where possible but it is not fun to wake up and realize no matter how lovely a day weather may offer up, or despite some fabulous events available to enjoy, I am going to feel "crappy"!  There is no desire for any particular activity, no ambition or energy for much beyond a really good sleep!

Being excited because it's the weekend isn't quite what it used to be, while that does mean no treatment for two days, it doesn't really offer anything different in what to expect in how I will feel physically!   I am happy to have John home with me though, he may or may not know just how much comfort his presence alone affords me, even when I have expressed just that sentiment to him.
I think a nice drive, perhaps to Young's Point, to watch boats come and go at the locks while we sit on a blanket and maybe enjoy an ice cream!   Anywhere near the water would be nice, watch the sun dance on the waves and listen as they lap onto the shore...maybe Lakeport?  
I'll do my best to find some "happy" and this afternoon, that is likely to be in the form of some "hammock time" and maybe a new painting!
Whatever I can do to change the title of my "end of summer" blog from "The Summer that Never Was" is a good idea!


Sunday, July 15, 2012

A Good but Crappy Weekend, and still worth celebrating!

I remember last Monday, my first round of Intron/Chemo one of the nurses guaranteed me I'd feel crappy that night and she was right!  Since then it's been an up and down kind of thing and over this weekend, mostly down!

I felt tired yesterday but today I feel VERY tired and Crappy!   Weakness, tired, nauseas and if I have felt sloth like due to the heat, I have felt Super sloth like with the combination of heat and all of these wonderful side effects bombarding my body!

The good news, week one down, only three more to go!!!!
Small triumphs!!!!  : )

Friday, July 13, 2012

A Full Day's Work and it's just noon - pokes, picc's, and warm fuzzies!

Approx. ten years ago I passed out upon arriving at the refreshments table after having donated blood, and that wasn't my first visit.   Today I almost passed out for the first time in all of these ten years since.
Today was PICC day!   It's not a terrible procedure but as the nurse rolled along in the procedure I began to feel very strange and said, "Should I be feeling very funny right about now?".   I feel very strange, dizzy, sick to my stomach and like I'd just like to close my eyes.
She said I might and then asked the other nurse to bring me the oxygen.   I'm working at taking the oxygen in and they work to keep me talking and ask me to keep my eyes open...I really really just want to close them and go to sleep!   They keep me talking and I enjoy the oxygen, but continue to have a great desire to roll onto my side and yes just go to sleep.
They are finally done and I am asked to just lay there a while.   We talk more, about each of my children and soon am told it is alright for me to sit up but not to go anywhere.    I sit up and we talk some more, I apologize because it seems I gave them a little scare.  I scared me too, it's been most unpleasant being reintroduced to near faintness!

Before long they trust I am o.k and permit me to go get changed.   Felicity the nurse follows me out to the waiting room to catch up with John and hands me my package of information and additional goodies.  I can expect a call from Home Care later today!

I thank her; again, and off we go.
I think I feel pretty good, then as we head out on the road to meet my sister I feel "illish" all over.
Upon arriving home I take my next Tylenol and fall asleep for the next 2 hours.

It was a very long morning today!!!   8 a.m.  to just after 12 noon, before we leave the hospital.

I'll sleep well tonight.


Wednesday, July 11, 2012

Picc's Ports and near Ambushes-Day 146 the "c" word

This morning I say to my husband, "Take advantage of me in the morning as much as you can!".   There is an immediate very wide silly grin upon his face!   I should have known how those words would be misconstrued!   Ah, gotta love him!   I was meaning for him to have me cook, do the dishes, etc., whatever I can in the morning because in the late afternoon and throughout the evening the side affects of the Interferon have already begun to stake their claim on my body, effective, day one-Monday July 9, 2012. 

It hasn't been too bad, it could be so much worse and maybe we've only just found ourselves at the tip of the iceberg!   Next week could be a much different story having given the treatment drugs a chance to really take hold!?   We'll just have to wait and see.   Hopefully for those helping with the driving to and from the appointments there won't be any "messy" side effects happening in their company!  

Each day we have been coming home, having lunch and then I head upstairs to my bed for a nap. It is upon waking up that I realize I am drenched in sweat, hot headed with a stabbing headache and feeling completely drained!   "Hello Interferon!"!   I am lucky though that to this point no naueau, if only barely there.  

The Chemo Suite is like a well run ship, extremely well run and everyone attentive to every detail in it's running.   It does to some degree feel like a spa of sorts, with people asking you if you'd like anything to drink, how about a warm blanket, would you like your chair set back?   They are wonderful.   I have learned to say 'Yes' to the warm blanket!   Today I had one initially to warm up my arms in aiding the ease of needle insertion for a new iv line.   Friday I will get a PICC line inserted which will eliminate the need for a new line every three days; as is now.   Without either the temporary port or the Picc line it would be a fresh jab at the ol' veins every day!  I'm not really into that and thankfully it seems the nurses don't like to do that either!

Yesterday I needed to use the washroom some time after my treatment was hooked up and underway so John unplugged me and I headed for the exit to the washrooms down the hall, when I hear a voice shout, "Where are you going?", I look to the left and say, "Oh, just the washroom!"...the nurse; owner of "the voice", says, "Not out there you're not, down the hall to your right!"!   She then laughs and another nurse steps through the doors entering the Chemo Suite and says, "No worries, I was prepared to ambush her!!"!   We laugh!
Note to self: Never try to leave Chemo with your IV hookup!  It could hurt!!!  LOL!  They don't miss a beat!!

Today on arriving this is the first question: 
"Are you a picc or a port?".

"I'm a port but soon to be a picc!", I reply.

It's a silly bit of a thing, but it did make me laugh as I headed to the washroom before hookup.
Not to worry, the washroom within the Chemo Suite, I wasn't about to be ambushed!
'Til next time.  Good night!  xo

Monday, July 9, 2012

The "c" Word Day 143 - Interferon, Let's Get This Party Started!

Hi Ho, Hi Ho, it's off to Chemo we go, tomorrow morning.  Interferon; interferon-alpha2b, IFN, Intron A, similar to but different than Chemo.  I'm a bit scared, just knowing this ride is likely to get a bit bumpy.   I'm also a little worried for John in the anxiety he too must be feeling in not knowing what to expect in how his usually generally easy going wife will handle all said possible side effects!

On Friday we had our visit with our Oncologist and his sentiment was that if I'm not feeling ill, then the dosage is too low.   Interferon is administered to force the immune system into action. Interferon is actually a natural part of our body's immune system, which kicks into action in response to a virus, bacteria or other intruders!   It attaches to other cells and causes changes including slowing down the rate of cell division and reducing cells ability to protect themselves from the immune system.
Wow Interferon does amazing things, unfortunately while doing all of that, will upon being administered and up to 48 hours later, make me sick!!!   Ugh!

My next four weeks involves a daily visit to Lakeridge Health Centre/MacLaughlin Cancer Centre, five days a week.   For an hour or possibly more, I will check in to the Chemotherapy suite every morning for a dose of Interferon and fluids via IV!   I am anxious but at the same time having been introduced to the Cancer Clinic and the nurses there and our Oncologist already realize the care received by these professionals is unmatched!   They are very thorough, attentive and most helpful in assuring each patient the utmost care.   After the four weeks, a two week reprieve then 48 weeks of self injections three times weekly.

Our Oncologist reminds us, that feeling like I have the flu is a good thing, it means the drugs are doing just what they should!   "Feeling ill is good!", it means the dose is strong enough!
I will do my best to try to remember that when flu like symptoms take over my body!  "It's a good thing, it's a good thing, it's a good thing..."!  LOL  Having said that the other most important thing to remember in this treatment, "Hydration, hydration, hydration"!

On our way home from LHC Friday we made a stop at Shopper's for a few items on the list of "Should Have's" in getting through this.   A thermometer, which we have not had in the house since the kiddies were young.   Fever, one of the possible side effects of INTRON.  If my temp spikes above 38 c, we are to go to the nearest Emergency!   Thermometer at the bedside.
Fever accompanied by the chills- blankets on hand.
Boost Nutritional Dietary Supplement on hand in the event I experience loss of appetite, another possible side effect.   Thank you Shopper's for your timely sale, @ 8.99 per six pack instead of 13.99!  YAY!
Tylenol, highly encouraged to help in combatting the "flu like symptoms".   Extra strength and the large bottle!
I will not be dying my hair any longer, not allowed and will most likely get it cut shorter.  I have been assured it is unlikely that I should lose my hair but am prepared thanks to some of the support I have from friends in the know and from the Melanoma Network of Canada discussion forum.   Dr. C said if I should lose my hair it will more likely be due to the added stress I experience in this, than to the effects of the Interferon.  My daughter has kindly offered to shave my head should hair loss beyond keeping it short occur.    She has come a long way from the little girl who broke into tears upon my mentioning that if asked to do just such a thing in support of a fundraiser, I would.   She stands brave ready to take clippers in hand and provide me a new look, completely fresh start!   Should this come to pass and my locks return ala new texture and in a shimmer of silver/gray, I shall proudly sport those natural locks with a new sense of honour!

We are ready!...I think.   Just as with the rest of this adventure, it just doesn't seem like it's real.  I continually just feel like I am "in the role of" a cancer patient.   I mean you always know of someone else who is going through this, it's not supposed to be you...ME!   I don't spend every moment of every day thinking about it, but yes certainly have moments where it's all I can think of.   Tomorrow as we sign in to the Chemo unit, just like at the time of either surgery earlier on in this adventure, it WILL seem real.
I have a good friend who very recently was also diagnosed with cancer.   It's very strange to know I know exactly what she is going through, while our cancer's are different.

Well, a big day tomorrow.  One more 8 oz. of water; meaning at least one or two trips in the middle of the night, and off to bed I go.

Good Night to you!  xo

Monday, July 2, 2012

Cancelling my Donor status- harder to think about than it is to become a donor.

This is so hard to do.
I suspected this might be true but in participating in a discussion forum on the Melanoma Network of Canada site, had the information confirmed today that I may no longer be an organ donor.
It is hard to imagine that while I would want to help someone continue to live on, I can no longer be a donor due to the disease Melanoma.   It would be with additional risk to an already frail body that my organs would be given to someone in need.   Even while I am NED (No Evidence of Disease), melanoma could surface at a later time and attack the body of the unsuspecting host of the gifted organs.
I don't recall, but it may have taken time to decide to become a donor many years ago and talk with my family about it, but knowing I can no longer be one is even harder to think about.
If you are not a donor, please give it some thought.   There are wonderful living reminders of how this changes lives for so many, all around us.   

I had given up donating blood a number of years ago even though while tests at the clinics may have shown my iron up and capable of a donation, I always needed extra time in leaving the gurney's and finally at one clinic passed out as I arrived at the snack table for refreshment; maybe seconds too late!   I was then disappointed also having only returned as a donor a few donations before.  I have remained on iron supplements since then.

I guess I'll stick to doing whatever I can in offering kindness to others, whether that be as simple as holding a door for someone with mobility challenges or volunteering at any number of events/organizations in helping out!  I know having been the recipient of such, even the smallest acts of kindness mean so much.

From the Yard, OH CANADA for 2012!

I was on my way to the top of the ol' sand hill to do my annual singing of the national anthem when I see the silhouette of two people at the bottom of our street; most likely arguing or on the "making up" end of things!  After living here for 26 years we've learned a little about summer love and the chronicles of!   Of course I am not about to head to the hill and force them to move on or listen to what might not be the best rendition of Oh Canada they've never heard!

I stay at my yard and head down to the fire circle hidden by trees and gardens and whilst having a lit sparkler in hand sing in a slightly quieter tone than my usual hilltop rendition do my traditional anthem in honour of this our beautiful country and home, Canada.   I couldn't help but think of our son Alex presently living abroad in South Korea, and missing his first Canada Day while on home soil, but knowing he is having the experience of a lifetime taking in a beautiful new country and it's culture.

Happy Canada Day Canadians and all those embracing our beautiful Glorious country, we have much to celebrate!!  <3

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