The truth is also that I spoke too soon about the dosage reduction making life so much easier. I'm exhausted so for the time being I'm just going to share here an update I gave to a dear friend:
I'm just really having a hard time with this chemo, unfortunately. It turns out that it's a little bit better with the decreased dosage but just a little. I've still got some significant physical difficulty for about 12 of the 14 days between cycles. (One treatment = one cycle.) The biggest complaints are debilitating fatigue, debilitating headache, and debilitating constipation/crazy bowel issues. Once in a while there's a little projectile vomiting thrown in for excitement, but the accompanying diminished appetite is actually yielding happy results on the scale!
Isn't this a happy response? I just like you too much and feel like you're too much of a friend to put on my breezy, "I can handle it!" voice, so you're ending up with an earful. (Or eyeful, as it were.) The truth is that Lorraine and I are really worried about this chemo regimen, because neither of us can imagine it being sustainable over the longterm. I kept hearing how "well tolerated" it was, but that has just not been my experience. I don't have enough energy to even do laundry or play with my dogs, my head hurts so much we have to speak in hushed tones and I have to stay in bed, and my stomach is always cramping or in a state of flux and great crisis. I haven't lost any hair yet, so that's a great relief, as it could have thinned! We'll talk to my onc this Friday (I see him before each treatment, which is an absolute pleasure, as we adore him and trust him completely.)
Emotionally, we're both quite fragile. Of course, it weighs on everything, and there's never any escaping the reality of it. It's just so heavy. And THERE. I can only assume -- and hope to God -- that it gets easier. Lorraine is absolutely amazing, but she's in such pain. We both are.
I'll post more soon, I promise.
27 comments:
Post as you can, but take care of yourself first.
What an awful place to be in--quality versus quantity plus all the unknowns. i can't imagine thinking of doing this for any length of time. Can't imagine not doing it, either. Thinking of you a lot.
Thanks for the update.
love, love, love you both.
All my love to you and Lorraine both. Mwwwwwwwwwwwwwwwwah!!!
Hi Sarah & Lorraine,
Sue had been checking your blog today.... & told me you had an update.
Geez, those side effects really suck. I don't understand why some people can tolerate this chemo & some can't? Is it because you had so much chemo before? Are you taking any medication to help with the side effects?
Would you ever consider trying to take Vitamin C IV treatments? (You can also do high dose buffered powder orally, but you can't get as high dose as you can by IV).
I have met several people who have benefited from these treatments. It has made them feel so much better, plus it has helped slow down cancer growth. One lady has lung cancer & has received all the traditional treatment she can tolerate ....so now all she does is get Vit. C twice a week...plus of course all her other supplements....she is 70 & told me the other day that she feels so much better & she continues to feel more energy all the time.
Another guy, a bit older than me, has follicular lymphoma, & he has been getting Vit. C IV treatments for 2 years...he swears by them....as when ever he goes off his treatments, his lymph nodes swell...& then when he goes back, they shrink again....though not as small as they were originally. He is trying to hold off having chemo & radiation as long as possible.
Anyway, this is something you may want think about...it may either help tolerate your chemo or help reduce cancer growth....& just help with better quality of life all around.
I have been receiving 1 treatment per week for quite a long time...& I believe it helps my energy level & strengthens my immune system.
I get it through my Naturopath's Office, but I know of some people who have it prescribed by their medical doctors...so as to cut costs.
Well, I hope your visit to the doctor was productive today & that you are able to come up with a solution to help you tolerate your treatments.
I still follow your progress....& still care. I am so sorry that you both have to go through this......it just has to get better.
With luv,
Angie & Sue
Hugs.
We're here when you can update, we're behind you when you can't.
sarah and loraine, blss yuor harrts
thos side efcts blow. i'v held bak frm postng so as not to intrude. ths has brot my beloved suzanne bak to me so vividly tho, i felt i just HAD to rspond. yuor atitude thru owt is tremendusly uplfftng in its REALISM. no 'pretend its all roses' heer. ths is wht it is.
wht ya see is wht ya get. and i love yuo both so mcch for it.
too mny times, we 'put on th smily fase', and do an injusstise. to owrselvs, and to eechotthr.
i am lfftng yuo eech indivduly up eech nite. sarah, for strength to get tthru eech hour. for less side efects so yuo can ENJOY eech momnt. and for HOPE, caus truth, we do NOT no wht is rite arownd th cornr. for loraine, for comfrt for eech momnt....blss yuo. ths is so hard. for pease, to com to terms and to get thru tth tuff momnts, so yuo can enjoy eech moment yuo have. and for strength, to do wht needs to be done.
all my love, girls! TRUTH!
sara
I think of you often -- is there any trial you can go on? I know a company called Seattle Genetics or something like that is in phase 2 of a trial.
Does your onc give you any ideas about possible other trials?
So many people are thinking about you and wishing you well.
Hey Sarah, it's Linda from 3FC (screen name famograham) :)
I was just checking in and wanted to send you some super-duper-ultra-mega-powered LOOOOOVE!!!!!!
I think about you every day, and love you tons. You rock my world, woman!You are one of the strongest women I've ever known.
xoxox
Linda
famograham@hotmail.com
Oh, Sarah, I haven't checked your blog in months, and then I do, and I see your recent few posts, and my heart broke in two. I agree with all of the above posters and while I know there aren't any words to make anything better, I just wanted to let you know that I'm behind you 100% and that I'm thinking of you and sending hugs and positive thoughts your way.
Hey Sarah,
Just checking in. How are you? How are the treatments coming along?
Love,
Duane
Hi, Sarah - I'm just checking on you, too. I actually just wrote chicking on you...had to fix that, though given 3FC, perhaps it's a new word we should use. :) Love you!
Just one more Sarah fan checking in. I think about you often. (((HUGS)))
-Sandi (3FC)
Hey you promised to keep us all updated (read bottom of post ;) Anyways just know we are all thinking of you and would like to know how you are doing. You have a lot of people who love you here, just remember that!!!!
Yup, I second that. Lorraine? Sarah? Could one of you post just a smidgen? We love you!
Sarah - I hope you are doing so well that you just haven't thought about this blog at all! I'm a random person who has been following your story for a good while now and really do hope all is well!
How are you? Thinking of you.
Sarah,
I have been thinking of you and haven't seen you post on the Webmagic site lately so I checked your blog. You have been so strong and and inspiration throughout this entire ordeal and you have helped me tremendously when I was down in the dumps. I just wish that I could do the same for you. Just know that you have touched many people's lives just by being your amazing self:) If there is anything that I can do for you, my phone number is on the webmagic contact list. It just breaks my heart that you are having to go thru all of this - life can be so damn unfair at times.
All my love (and prayers) are being sent your way!
Wobin (Robin)
Hey Sarah, just wanted to know that you're being badly missed on the forum - hope you're doing OK? xx
Sweat Sarah, I just want you to know that you are constantly on my mind, in heart and prayers. Hang in strong - the harder this chemo beats you the more it kicks cancer's butt! So it's all good!!!! HUGS!!!
Thinking of you, Sarah.
Sarah,
I have checked in a couple of times - hope everything is okay.
Heather Z.
Hey, you...Have a space bar yet? We miss you, Sarah of the Big Heart. :) Love,
KImberley & Howie
Sarah, Lorraine...I'm thinking of you every single day.
Please let us know how you are doing...
There are so many people out here in the world, worried sick and wanting to know if you are OK :)
My email is famograham@hotmail.com
xoxoxoxoxoxoxoxoxo
Linda
I'm thinking about you and Lorraine often and hope everything is OK.
Much love,
Denise
An update, please
Sarah...Lorraine...Could one of you drop Howie or me an e-mail? Love you both.
Sarah, I truly hope you don't mind my doing this. I found your posts at the Hodgkins Message Board link you give and read your update from December 28 and the post about the SGN-35 Trial. I know there are so many folks wondering how you're doing, and since those forum posts are public searches, I'm just facilitating...
http://forums.webmagic.com/ubbthreads/showflat.php?Cat=0&Number=616225&page=0&fpart=1&vc=1
http://forums.webmagic.com/ubbthreads/showflat.php?Cat=0&Board=UBB1&Number=618852&Searchpage=1&Main=618852&Words=+SarahSmile&topic=&Search=true#Post618852
Hope these links work!
Post a Comment