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|Tuesday, November 29, 2016, 2:27:15 AM- Yeah, so the count down. 1... or not|
It has taken me a while to wrap my head around all of this and I have not been a very happy camper. I should have been thrilled but as is often the case life is imperfect.
Last Tuesday I was back at the Dr and the good news from the recent CT is "complete response" The last node that was being a bit of a bitch is back to normal for now. I should have been celebrating again but this issue of the blood thinners came up.
I was initially told that I would have to inject myself for 6 months and as you know I have been counting down like a kid looking forward to Christmas.
I was told that I would have to have them forever. When I said I was hoping for a break I was given the option of Warfarin, weekly blood tests the possibility of never being stable with it and nixed that.
I was offered the option of low dose aspirin and was told that IF I am going to take a break now is the time to do it BUT it is only 40% as effective as the Fragmin. I jumped on it. I went out and bought it.
I am now paranoid as hell. 40% as effective does not give good odds. I have been in a funk all week.
I wanted that break I was promised. I feel like I physically need the break. I am not really supposed to take that break because "You have cancer! You are at a high risk of another clot!"
The Doctors words.
I thought I could deal with the uncertainty. I quickly realised I can't.
I am going to call tomorrow and ask for my prescription to be renewed and I will panic until it is in. I will jab myself forever because a few seconds each day and a few bruises beat the hell out of wondering about every little ache and pain which I was told to be hyper vigilant about because they could be another clot.
I have been feeling really, really sorry for myself,
|Tuesday, November 8, 2016, 1:47:48 AM- God damn|
I am out of shape!
I had planed to go for a short walk today, just to get back into it. When K1 suggested I go along with her and the dog, I got to the let him off the leash, chase the ball place and had to bail. I felt good, really good and the weather was more like late September than early November but looking at the rest of the planned route had to bail.
By the time I got home and did a few chores I was toast.
I hate it. I really, really hate feeling so exhausted.
I know I should give myself a break but it is so hard especially when we are having such awesome late fall weather.
Fall is my absolute fave.
I want to fully enjoy it.
I can't and it is frustrating the hell out of me.
|Wednesday, November 2, 2016, 12:43:22 AM- 28 days|
Another count down from me but you have been here for most of it I am going to take you with me for the rest.
28 is the number of needles I have left to jab into my belly.
28 is the number of days that I have to look at myself daily in the mirror and see new bruises appear.
28 is the number of days before I start to see an improvement and can think of posting again!
I have missed posting. I have missed the challenge of getting a half decent pic and I have missed the rush that votes and comments bring.
28 days, 28 needles, 28 alcohol swabs. 28 days till I can get rid of the sharps container living on top of my fridge.
CT on the 14th, blood and Dr on the 22nd but in 28 days and I am done with the nightmare of injecting myself that brought me to tears when I found out this was something I had to do for the next 6 months.
Just 28 days and I can turn the alarm on my phone off.
I think I just may celebrate this :)
|Sunday, October 16, 2016, 4:51:20 AM- Something I want you to rethink...|
This has been on my mind for the past few months. Actually since I started this journey you have to be sick of hearing about. I will not say this is the final thing you will hear me say on the subject but it is one that has had me alternately stewing about and becoming very angry with.
It was brought back to the forefront the other night by a comment that was left on my status post.
I want you to rethink the next time you chose to say some one is "battling with cancer"
It is not a battle. That implies that you have chosen sides. You have taken up a cause that you feel strongly about. It implies competition.
In reality nothing is further from the truth. From the moment you are diagnosed you submit. You have no choice. You submit to tests. surgeries, treatments. You submit to the very diagnosis itself. You submit to the drugs, the side effects and a reality you had no idea existed. You submit to needles being stuck in your veins over and over and are grateful if you are lucky enough to get away without a picc line or port and if you have to have those you are grateful to escape the pain that was being caused by those needles.
You become accustomed to the indignities your body endures because your body has betrayed you and all you want is to feel normal. You submit because there is always someone who is submitting to much worse than what you are dealing with.
You submit because someone tells you they are sending their best wishes and you wish you were in a position to do the same.
There is no battle about it.
What may be perceived as a battle is submission. The willingness to accept at this point inevitable and to deal with it as positively as possible. That positive attitude may be inherent or it maybe a result of the now massive medical team that surrounds and treats you as not a mystery but as a sentient being that deserves to understand exactly what is going on.
What you may think is a battle is actually a very long series of times when you just have to say I can get thru this. It will only take 15 mins, 4 hrs, a week, 2 weeks or longer then I can be myself or a close proximity of.
You submit because you do not want to let the people around you who are staring at you like you are a bomb about ready to go off fall apart. You submit because damn it no matter how shitty things may have seemed they weren't all that bad and you just want to live for just a lil bit longer to see...to do. You submit and you tell others that are just starting on their journey not to worry because worrying is a waste of time.
Right now I am lucky. Very incredibly fucking lucky.
But I want you to understand. There is no battle. That is a misnomer. What there really are a bunch of bewildered people just trying to figure out what the hell just happened and making the best of it in many cases just so you do not fall apart.
Brave. Yes! Warriors probably not. Adaptable. Definitely.
Cancer is not the only disease that affects lives so drastically.It just happens to be the one that strikes the most fear possible because there are so many variables to the disease but there are so many others that are living, yes living with a disease that is just as confusing that deserve the same kind of respect.
I had to get this out.
|Tuesday, September 6, 2016, 11:30:22 PM- I got the job!|
It is going to be more hours than I had anticipated but with the way things are, treatment and camping plans, I am going to be weaned into it. I have 2 shifts this week, 2 the next and then a week off before I get back in the full swing of things. First impression...they seem nice.
Now I can start thinking about making those nebulous travel plans a reality.
Looking forward to being back in the saddle,
|Friday, September 2, 2016, 1:13:12 AM- The more things change|
The more they remain the same. Some smart ass said that.
When it rains it pours. Another smart ass said that.
In the past week I have gotten visits, texts and calls from people I have not heard from in weeks, even months.
For the most part that has been a good thing. We all have those friends that it matters not how much time passes, we pick up right where we left off. They are to be treasured. The others well I suppose we can call them the detritus of life.
I have been wanting to make some changes and have even been anxious to do so even with the limitations I have or perhaps because of them.
I got a text this morning.
I have been unemployed for almost a year now. Something that turned out to be good timing. I have been thinking about it and have been talking to those in my group of contacts about employment. I am not in a rush, I still have 2 more rounds of chemo to go. I know how it makes me feel. I know how much time it takes and have been fully prepared to wait it out.
I got a text this morning. I was told that I was wanted. I was asked to make a call.
I made that call and I have an appointment to speak to the person that could be my future boss. It is not by any stretch a glamour position but it is one that I have much experience doing.
I want this job. It is perfect for me in every way. I was asked for because of my experience and I am hoping that once I lay it on the line about all the time I will not be able to work, the advantages of hiring me will still out weigh the time I will require off.
This new boss hasn't got a clue about anything about me other than my years of experience.
Cross your fingers n shit that he realises the time I have to take off is worth more than the time it would take to train someone who hasn't got a clue.
|Thursday, August 4, 2016, 8:57:09 PM- The BEST news|
I had my pre chemo Dr. appointment today and got the results from my last biopsy, finally, and my recent CT scan. The biopsy results were yup Lymphoma which is great because I don't have to worry about it anymore. It is being treated appropriately.
The best news is the results from the CT scan.
Everything came back normal!!! :)
The grapefruit sized tumour is gone!
The Dr. was beaming when he arrived. Everything is going exactly the way it should. He told me I was doing very well! He has rescheduled my next treatment so I can camp (all we have to do is find a car now) He told me to drink a bunch of beer and put my feet up in front of the fire and gave me a fist bump :)
I still have 3 more of the monthly treatments and the every 3 months for 2 years maintenance with the resulting side effects but lemme tell ya, I am doing my happy dance.
|Saturday, July 16, 2016, 2:52:07 AM- My strongest allies|
are the ones I hate the most at times.
They are the ones that know me the best. They are always there for me. They are the ones that I can not live without but at the same time they are the ones that remind me the most of who and what I am.
I always love them as I know they love me but at times they are so fucking annoying.
Every now and then I want to be without them for just a few minutes but those would be the loneliest minutes of my life.
I am lucky to be stuck with such assholes even though I wish they would just fuck off for about 30 seconds and then come back as if nothing ever happened.
I want to not be me but I want nothing to change.
It has been a long week,
|Thursday, July 7, 2016, 8:57:04 PM- I am so bloody excited!!|
I already had to cancel one trip this year. I was to go to Florida for 2 weeks at the beginning of June but that was shoved aside rather unceremoniously with my diagnosis.
I have another trip planned for the beginning of September to go to my favourite place on the entire planet for a few days of camping. I have not been there for a few years and have missed it terribly. My kids basically grew up there. It is the place I feel most at home and I refused to admit I may not be able to go.
Given treatment schedules, chair bookings, blood work, CTs, Dr. appointments and the inevitable shitty side effects, time is flying. So while I was in there today knowing after this cycle there is only one more until I run smack dab into the next and the trip. I asked the Dr. about it.
I knew my Dr. would help me figure something out. She has been totally amazing but she is on maternity leave now for a few months and I had no clue what this new guy was going to be like. It turns out he is awesome :) He reiterated that my lymphoma is a very slow growing one and not as time sensitive as some others and told me he would make sure I was able to camp and feel as well as possible while doing it :)
I know I am going to be tired. I know I will have to rely on the others to be my pack horses and do some of my share of the work but I get to go!!!
Looking forward to watching the sunsets over the water from my rock,
|Sunday, June 26, 2016, 1:19:35 AM- Life. The awkward side.|
I have been mulling this over for quite a while now and just couldn't figure out how to say what I wanted to without it sounding accusatory which was not at all what I intended.
Having an amazing sounding board has enabled me to gather my thoughts.
We have all had that moment when we are confronted with something that shocks/surprises/confounds us and we really haven't got a clue how to react. I have been there. We all have.
Some chose to ignore the news. Others decide the best thing to do is boost morale by telling a story they have either heard or have been part of first hand.
Neither of those reactions are going to be appreciated by the person that is going through what ever it is. Remember to them this is all new too and they are for the very first time sailing uncharted waters. They are not going to be appreciative of a long story about how so and so dealt with it because they are at the beginning of their journey. Save those stories for later when comparing battle scars. Ignoring the situation just conveys that you don't give a shit.
If you find yourself in an awkward situation like this the best thing you can do is either say point blank "I don't know what to say" or "what can I do?"
Generally you don't actually have to do anything. This isn't your journey remember? But it gives the person going through it the sense that they are not alone.
That kind of support is invaluable. I know because I have been lucky enough to have been the recipient.
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