If I've been quiet lately it's because the last few days have been emotionally more difficult. You know when you hear about someone fighting Cancer, it's not just about the physical challenges that it entails but it is also mentally very challenging.
For the most part you try to keep a brave face, you try to find distractions and sometimes you even manage to joke about it but whatever you do the reality of things is always somewhere at the back of your mind.
It's a constant mental battle, a gnawing fear that you have to keep under control the best you can, because you can't let it take over, I don't know how long I have but I need to fight myself mentally in order to make what little time there is one to remember.
Usually you manage to feel almost normal for a few days and then something either said or read, a passing emotion, a stranger's happiness, acts as a trigger and the fear comes back.
When I went to see my surgeon last Tuesday he admitted that they couldn't compare my case to any other as no one had ever presented that way before. He also explained that if the Chemo failed to reduce the tumors, they wouldn't operate as it would be pointless. So I guess if the Chemo doesn't work, then they may try a different regimen and if that doesn't work...well I'd be looking at palliative care.
Certainly hearing him saying that they wouldn't operate brought everything back up but I feel that I need to ask those questions even if I don't particularly like to hear the answers. Knowing what to expect is helping me gaining a little control of whatever is left.
I had nightmares two nights in a row after this appointment, the first one I woke up both Vee and I as I screamed aloud during my sleep. I vaguely remember being alone in this dark house and hearing voices coming from the different rooms. The second dream I was a soldier during WWII and a German soldier was approaching towards me, I aimed my gun and fired but the barrel was empty, I fumbled into my pockets and finally found the cartridges but I couldn't load them into the gun, my hands were shaking, I was terrified, when I woke up, I was cowering under the blanket.
Everything you do in life is geared towards learning to live, death is not only a taboo subject but it's something we tend to associate with old age. There are plenty of people who can give you advice on how to live your life but there's no course out there teaching you about dying young.
How can one's mind come into term with witnessing one's own demise ? Of course we all need to accept it at some stage, as that is the only absolute truth in life but It would have been nice to have more time to think about it.
I was only joking last week how I still had all my hair and felt almost cheated but this morning Vee found a few patches missing at the back of my neck and then when I had a shower I noticed a bigger patch above my ear....
Vee also found more hair in the bed on my pillow...I didn't feel like joking for the first few hours after that....
Now I feel a bit better but the patchy hair definitively gives me a poxy look, It's kind of weird, I mean, you look sick but it's not the sickness that makes you look sick it's the so called antidote !
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- Alex
- Diagnosed with Leiomyosarcoma, a rare soft tissue cancer on Friday the 28th of March 2008, this blog is about my ups and downs, some random thoughts and dealing with the many challenges ahead.
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5 comments:
I'm not sure what to say. I imagine when you see the evidence on your pillow of what the drugs are doing to your body it kind of brings things home. Also sounds like a pretty scary consult. I can only hope when the chemo is over, the drugs have done a damn good job.
In the meantime, hoping you can get some good rest.
Bea
I've always found that one of the scariest things about cancer - that the treatment is so difficult. I would find that hard to reconcile, too, I think.
I think you are very right, too, about how we treat death, espcially for young people. There is so much denial around it and it seems to me that just makes it all more painful. In my meditation practice, there is a lot of instruction about turning towards the feelings and thoughts that scare us instead of turning away as is the usual habit. It is so very hard to do, but in a strange way is much more peaceful and even joyful because it makes space where there is no struggle. Even if that space only lasts a few breaths. But we are not taught to do that in our culture, with all its focus on thinking postive and not taking no for an answer and overcoming and individual struggle and eventual triumph. Which I think is a load of bunk, most of the time. Not to say those things don't happen and individuals don't persevere and triumph, but I think the truth is that most people don't have the kind of faith in a positive outcome as we romanticize them to have.
All of this is a long way of saying: it sounds like you are doing what you need to do, in your heart, so keep up the good work.
I hope that you are not feeling alone in this and that your thoughts and fears are being truly heard. And I am wishing you much space and much peace. Plus some good dreams for a change.
When I was first diagnosed with "Testicular Cancer", my GP tried to reassure me by mentioning how Lance Armstrong not only beat his cancer but also how he went on winning the Tour de France. Vee bought me Lance Armstrong's book "it's not about the bike" and I read it whilst in hospital waiting to get correctly diagnosed. I guess most would think that his story is inspirational but personally I found the book to be quite frank and raw. It didn't embellish anything and I sure as hell didn't feel inspired when I finished reading, I felt sad and depressed if anything. I probably learned more about the effects of Chemo and living with cancer in Armstrong's book than I did reading the information provided by the hospital.
I think that cancer is misrepresented in the media, all that they show on TV are bald kids in their hospital beds with big smile on their faces, I'm sure those kids only smile for the camera also cancer affects people of all ages and I'm yet to see TV shows about young adults dealing with cancer. They only show people after their hair has fallen but it's not representing of the actual shedding of your hair, how traumatic this can be for some...The media have made cancer into this clean disease, I don't think that the average person has any idea about how destructive the so called treatment is from both a physical and mental point of view.
I also think that no one truly triumphs over cancer, those whose cancer is cured will always carry at least mental scars and for the others they pray everyday that their cancer doesn't come back.
Hi Alex,
Inoperable is something that a lot of us hear with LMS.
One friend of mine in particular, Kim, has heard that over and over and has persevered in finding a doctor who would not say it is inoperable. She even went to a doc in Germany (Dr Rolle) to have some cutting edge lung surgery that no one in the US could do, when every doc in the US told her it was inoperable. That was about 2 1/2 to 3 years ago. She has had other surgeries since then on inoperable tumors because she won't give up. She wants so badly to see her kids grow up.
There are at least three times that I know of where she has done this, getting successful surgeries on inoperable tumors. In addition to the months in Germany she has spent a lot of time at memorial Sloan Kettering in New York City and MD Anderson in Texas. She is not a wealthy woman with unlimited resources either. She just goes for it and so far it has worked. She will not live forever, but she will live as long as she can and she doesn’t believe it when a doc tells her it is inoperable. That only means that this doc thinks it is. There are plenty of docs in the world with lots of different kinds of expertise. You can probably tell by the way I talk about it that I really admire Kim. I do not know if I have it in me personally to do what she has done, but I am quite a bit older and have some other pretty intense health issues to deal with besides LMS.
The Sarcoma Alliance is a good place to go for some financial assistance when it is needed. They have a well-known second opinion program where they reimburse some of the costs of seeking that second opinion, for those who need financial resources. There are free or low cost lodgings near a lot of the major cancer centers that deal with rare cancers because it isn’t always possible to get the care needed close to home. There are treatments available in other countries that are unique and not locally available. That is especially true here where getting things past the FDA is so expensive and time consuming that a lot of worthy treatments never make it this far.
The bottom line for you Alex is that you do not have to give up until you are ready to give up.
Even palliative care has degrees. Back to my friend Kim again, all of the care she has had could be considered palliative as she is stage 4 and there is no cure for LMS. It is possible to live a long time with stage 4 cancer. It is also possible to have a reasonable quality of life while pursuing treatments for stage 4 cancer. You don’t have to look at the bright side; I just wanted you to know that there is one in case you do.
If you want to talk about death, I understand. Most people who are not facing what we are do not understand that there isn’t anything wrong with that when we are facing all of this. It is their attitudes that are unrealistic, not ours. We face the fire breathing dragon and walk away as much as we possibly can. Every time we walk away it is a small victory, but we still know what we are facing and what our chances are of surviving dragon breath forever.
Sorry I went on so long here. You take this however you need to, but I am here and I will entertain discussions of death if that is what you need to talk about at any given time. OK?
Always, Carole
Thanks Carole, I'll keep that in mind....
To be realistic I think I need to see through the treatment first and then have the scans and see how this is developing...surgery can be quite drastic in some cases but may not suit all LMS patients.
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