Time to be Merry

Hiya Everyone!

So I figure I owe you all an apology as I haven’t been on my blog like I would have liked. I have been having a rough time the last couple of weeks. It’s been rather difficult as I am beginning to feel more and more like a cancer patient. Literally I have no energy whatsoever and I am not really eating all that much – my appetite is really off. And my stomach is terribly unsettled.

When I feel like this, I begin to think that this may be my last Christmas and it terrifies me. I feel as if the cancer is winning. And I can’t have that happen.  I have been feeling much more emotional lately. I can’t even make it through that damn “Christmas Shoes” song without balling. And I have been dropping the f-bomb more frequently for some reason too. I guess cancer is making me a bit of a hick. Need to figure out a wiser way to channel all of my rage.

Christmas time is my favourite time of year. I love everything about this season (okay maybe not so much the frigid weather). So it saddens me when I can’t participate in Christmas activities.  No energy for baking or shopping which are two of my favourite past times. My oncologist said I should take a wheelchair with me to the mall but I choose to walk for a bit, then I sit on a bench for a bit, and so on.  I tend to get winded very easily now. How sad is it when here I am sitting on a bench resting while some grandma zooms by me with 50 gifts in hand. Oh well.

Not sure if I updated you all on my current state. So essentially that “polyp” that was removed from my stomach was indeed cancer. Some sort of sarcoma. Go figure. Everyone seemed shocked as this particular cancer is so rare and it’s even unheard of in the Li Fraumeni world so I must truly be some sort of mutant. I lost count……cancer #7?

Anyhow I was booked for a CT scan of the abdomen to see if there is anymore nasty cancer in the stomach to deal with. I had to drink some foul liquid plus I was given some sort of injection on top of contrast dye. Awful. Since that test, I haven’t been the same. Luckily the test didn’t seem to detect more cancer though I will require another endoscopy a couple days before Christmas where the doctor will attempt to see if he can remove or burn the base of the tumor, which is still inside me. Fun stuff.

It’s been quite the bumpy ride but being slightly stubborn I refuse to believe that my expiry date is up soon so I am continuing to be hopeful despite the statistics. But I am not going to lie, it’s been challenging. My oncologist doesn’t think people come out of this when they get to this stage of the disease. But she also doesn’t think I am the typical patient, so who knows what’s in store.

I definitely don’t feel like myself.  I have lost weight as well as muscle and can even feel my bones in certain places. And my poor boobies are suffering too. There are even days where I am so frail and weak that I can actually feel my body breaking down on me. I am desperately trying to reverse this so I can start getting back to feeling healthy again. Hopefully I can still turn it around.

It also makes me feel sad that I can’t really enjoy the season the way I would have liked. I love eating and sharing dinners with friends and family but now eating feels like a chore due to my lack of appetite. And I don’t feel fun. I feel as though I am the sad cancer girl who is depressing to be around. And no one wants to feel like the person that people just pity.

But then the other day it hit me. When you feel lousy and sick you tend to feel angry, depressed, isolated and easily  irritated. However thinking back on all those who lost their lives to this treacherous disease as well as all of the adults and children that are currently in hospital or very sick I become much more thankful.  I have lost people to this disease and I am sure they would be thrilled to be alive. So as frustrated as I may become, I will always be thankful for my life and for everything I do have.

As a society we are so consumed with ourselves and we have such a sense of entitlement as to what we think we deserve. No one takes the time to slow down and appreciate what they have already been given. It i quite easy to take everything for granted and always look to those that have more. But it takes  strength of character to look at those that are less fortunate and be thankful for what we have. We need to look around us and be grateful especially during this season.

Despite the aches and pains, the upset stomach, the lack of energy, the diarrhea, the lack of appetite, the fluid around my lungs, the shortness of breath, and the coughing, I still have so much to be happy about and live for.

So regardless if I am being naive or not, I cannot give up. I have too much to live for. I can still get out of bed and I can still sit and enjoy Christmas carols while I slowly work on some Christmas stuff. I can also still enjoy snuggling up on the sofa and watching Christmas movies or stare at the laser lights that my amazing husband put up to make me feel a bit more festive. I love that man.

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I think the main point I want to make from this post is that for all those brave children and adults battling cancer, especially an advanced or late stage cancer, they cannot give up. It’s rather easy to become obsessed with death when you see yourself slowly deteriorating right before your eyes. You begin to panic that this is it. You begin to recall all those around you that passed away from this disease and  how you are starting to look like what they looked like. And it’s really scary sh@t.

I just want all of you to know that no matter what people say, it is really difficult to focus on the good when you feel so bad and so scared. But cancer is no dummy, unfortunately cancer cells are quite intelligent and they will take over, especially if we make it easy for them.  As difficult as it is we have to focus on the positive and this will allow us the opportunity to try to get better. In the end life will play out as it is supposed to. All we can do is try our best. And that is exactly what I am doing.

Health, love and tis the season 🙂
Xo

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Hoping to be Chronic, not Terminal

Naturally I would love to consider myself cured. I would love to be given an N.E.D. (no evidence of disease) determination on my next CT scan. I would love the cancer to just disappear and never return. I also wish for a cure for each and every individual that suffers through this torturous disease.

Although I hope and pray for such “miracles” each day, the harsh reality of the matter is that this is not the case. At least not at the moment.

So the next best thing for me to hold onto right now is that my cancer will become chronic as opposed to terminal.

Essentially, there is a distinction between cancer survivors, terminal cancer patients, and those with chronic cancer. The definition of a cancer survivor seems pretty self-explanatory. You have cancer and you survive it. Plain and simple. I myself was a previous five-time cancer survivor. The more difficult concepts are the latter two: the terminal cancer patient and the chronic cancer patient.

There are different factors involved when labeling someone as having “terminal cancer.” Some of which are that the person is given only weeks or months to live, that the cancer is progressing and cannot be arrested, that the cancer does not respond to any given treatment, that there has been secondary metastases (for example, the cancer metastasizes to the lungs and then to the bones), or the cancer causes the compression of vital structures or organs, etc.

The more elusive concept is that of the chronic cancer patient. For these individuals the disease will never go away completely but it can be controlled. In effect, the cancer can be arrested, not eradicated. This is what is generally known as stable disease, whereby the cancer can be kept in abeyance. These are the stories we hear of patients who live many years with certain types of cancers. In most cases the cancer will eventually kill these patients, but this may take longer than statistically predicted. Chronic cancer patients typically engage in countless therapies. One combination of drugs may fail while another may work. Sometimes this lifestyle can take a toll on chronic cancer patients and wear them down. Imagine an arduous schedule of clinical trials, targeted drug therapies, follow-up appointments while all the while trying to maintain a positive attitude with the hope that the cancer will not begin to spread again. This can gnaw away at someone’s spirit, destroying the indivdiual little by little.

However, as difficult as it may be to live with chronic cancer it still remains superior to the alternative, which is terminal cancer.

It is extremely difficult to stop my mind from wandering into dangerous territory. I have to consciously distract my brain from the negative thoughts.

I begin to think that perhaps I will have to endure treatments as I did as a child that will cause hair loss, weight loss, loss of appetite, nausea, fatigue, etc.

Perhaps the cancer will continue to further spread to places that will cause debilitating pain, seizures, blackouts, or organ failure.

Perhaps I will become terminally ill and will wither away in a hospital bed like so many brave individuals before me.

Perhaps my lungs will collapse.

Perhaps I will be faced with pulmonary effusion (fluid in the lungs), which can cause a number of complications.

Perhaps these are all likely realities in the near or distant future.

Perhaps this dreadful day will come, hopefully it won’t.

So today I find solace in hoping that my cancer will stabilize and that I too can consider myself chronic, not terminal.

Sadly metastatic cancer patients must content themselves with little milestones, knowing that their cancer cannot be cured but can be controlled. Seems pretty boring, I know. But nowadays I’m loving the idea of being boring.

As these demoralizing thoughts take over, I begin to visualize my meditation instructor’s voice telling us to retrain our brains into thinking that we are healthy and healed.

At this very moment I say to myself that I am fortunate that my cancer has not spread to other organs other than my lungs. I am extremely thankful for not being deemed terminal right now. I am very lucky that all of my organs are doing exactly what they are supposed to be doing, and my body is functioning as good as it can with these nasty little tumors trying tirelessly to slow it down. So ha cancer, take that! And yes, it’s very mature of me to taunt my cancer.

I pray that all those facing metastatic cancer will never have to face a terminal diagnosis, and for those facing one, I pray for a cure.

Today I find myself as healthy and healed as I can be at this very moment in time.

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Love, health, and the hope of tomorrow.
xo