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Stay focused

9/6/2012

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Hello Everyone,
I am so sorry it has been so long since I posted.  It has been a year filled with ups and downs and triumphs and falls and I would like to share them all with you. 
My last dose of chemotherapy was at the end of January of 2012.  That dose seemed to be the start of a few new symptoms that included what I can only describe as internal shaking that would sometimes force external movements or shaking.  At that time I was also dealing with some shortness of breath and chest pain as well as some difficulty climbing stairs.  None of the last three symptoms were new, all of them I have had some issues with in the past, but somehow they were worse.  In March after a month of feeling worse I went to a pulmonology appointment and was taken straight from there to the ER where I was admitted to the critical care unit for 5 days.  While I was their I was diagnosed with a heart issue called Postural orthostatic tachycardic syndrome which basically means my body could not regulate my heart correctly and that was causing me all these heart symptoms.  Well I left the hospital devastated and unable to walk 5 feet without gasping for air.  March was definitely a low point for me.  My cardiologist suggested exercise (even though he knew it would be difficult for me since I was so short of breath and in so much pain) but I said that if it would help I would suck it up and do it.  During this same time I was also diagnosed with immunodeficiency syndrome (which I've probably had for years and may explain why I have acquired so many health issues).  I struggled through April and May but seemed to be getting better and by June I knew I was better.  I am now feeling like a new person.  I am able to walk and even jog some and I am cancer free!  I am not in pain often and I am feeling quite well for someone with so many health problems.  My scleroderma seems to be behaving and so does my other health issues.  Could I actually be on the mend?!?  I really, really hope so.  This has been such a journey and I know that I have some things that I have to take care of like my eyes (I have glaucoma and cataracts although neither is bad enough to recquire surgery or anything serious), and I need to take care of me, but maybe I am on the mend.  The only lasting issue from the IPT that I seem to have is some aversion to food, but I was aversive to food before I got sick, so maybe that symptom is just a part of my personality. 
I also want to add that I really enjoy hearing from you if you are reading my site.
Good luck to
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Week 7 ends

6/11/2011

1 Comment

 
I apologize for not posting sooner.  Life has been so hectic lately.  I finally started once a week IPT sessions last week and being able to stay in my own bed in my own house every night has helped.  It is exhausting flying out to New York and home in the same day, and it makes for a really long day, but at least I am home at night.  I haven't had any more complications from treatment thankfully.  Week 3-Week 6 were really intense for me.  I experienced many side effects from the chemo and I generally just didn't feel well.  I stopped running for those weeks and couldn't even get motivated to walk, which is so unlike me.  However Week 6 I took a turn for the better.  The random vomiting stopped and the nausea supsided.  The neuropathy is still present, and my eyes do still occasionally throb and hurt, but all in all I feel better.
   
My IPT doctor thinks that maybe the Gc MAF has finally kicked in, and I think that maybe the autohemologous injections are helping as well.  I have started running again, although I am still having some chest pain during my runs, it seems to be residual from the damage that was done by the Doxyrubicin.  I wish I had never taken that drug.  I hope that someday with all the detox I am doing that the damage from the Doxy can be reversed.  

I should be getting my PET scan either next week or the week after.  I am a little nervous about the scan.  The last time I had one I thought I was getting better, when I was actually getting worse.  Although this time I can see how I was in denial before, am I in denial now?  I really hope not.  I don't think I can handle bad news.  I really need this to be working.  We have put so much time and energy into this treatment not to mention the huge amount of debt we have accrued in hopes that this treatment will work. 

I long to have my life back.  I wish we could go back to a world where cancer was not a part of our life.  Unfortunately cancer has changed my life forever.  The fear of cancer will always be in the backs of our minds, even if I beat it this time.  How do you live life knowing the cancer might come back?  Do you go back to school and finish your master's?  Do you stay at home and try to enjoy every moment of life?  Do you live in fear?  Or are you fearless?  I don't know where you go from here.  I have so many books on cancer, but maybe what I really need is a book on how to live your life after cancer. 

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Tired Today

4/19/2011

2 Comments

 
I am feeling tired and sore today.  My joints are aching and my feet are swollen.  I had another "attack" of sweating.  I never know when it is going to start and before I know it my hair is soaked and my clothes are drenched.  I REALLY dislike this side effect of the Lymphoma.  Sometimes I have to shower several times a day.  I guess it may be a good thing though, since there are no blood markers for Lymphoma I may be able to gauge how much better/worse I am getting by how much/often I am sweating. 

I am getting nervous about going to New York.  I was joking with Jack that if I had to choose between dying on a plane and dying of cancer I'd rather it be the cancer although 50 years from now (I HATE to fly, I am scared of flying and I will be flying every week!) 

I took the Gc MAF the other day and I don't really feel different, although I am worried that I wasted the dose because I took the heparin too close to the medicine. 
2 Comments

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    Jennifer C.

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