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Hello strangers...I'm going to write an update here...Gird your loins!

KarenMG's picture
KarenMG
Posts: 67
Joined: Jun 2017

I hope everyone is doing well, I wish I had the guts to come here and read everyday and be more supportive to you all but I am so weak now, mostly emotionally but certainly physically!

If anyone reading this has experienced the joys of the Y90 please enlighten me! I read that the fatigue lasts for weeks, it's now been 32 days since my first treatment. I still feel very, very fatigued all the time. Doing any activity knocks me out. Also the Friday before my treatment I had to go to the dentist for an emergency severely painful tooth. Started antibiotics and was able to go through with the Y 90 on Monday. It went like a textbook case and was evidently successful which is great. My CEA dropped almost 100 points last week. That is all fabulous so why do I feel like I'm dying, just to the core bad feelings? I went to a Broadway play one night, not good timing but I could hardly skip it, was a early Christmas present. I really couldn't enjoy it for the fatigue and the nice special new pain I am having down my legs constantly and in my back. Oh and the antibiotics completely wiped out my normal flora bacteria so red mouth and non stop diarrhea for 3 weeks. My eyes even got weak and fuzzy! All this is much improved too, so I trudge on. That was strange!

I drag around like I am 102 years old. Meanwhile, had to go for a root canal last week. Well, it was a fail because of a crack way high into the tooth. It was like the straw that broke the camel's back. I broke down and couldn't stop crying in the dentist office. Oh boy! However, It's all better now because I did get a crown on another tooth and am to get this bad one extracted and have a implant put in, then I'll be like new, in my mouth at least. Several thousand dollars and 5 visits later!!! One day at a time, one day at a time. So by March, I should have my new prettier teeth that don't hurt, I will have had my second Y90 and can hopefully do a bucket list trip to Hawaii or Tokyo or maybe both!!! That is positive thinking...that's all I've got going for me right now, and my few friends here that love me.

Yes, I have and you ALL have been through so much that it's unbelievable. My oncologist (Dr Death) and his nurse both look at me like, "why are you still here?" Seriously. Well I might look good but make up does wonders.

I would love to hear from you all and how it's going with you. You might notice I'm a true night owl. That's not going to change. I've had 2 oxycodones and several mg of Ativan, yet here I am wide awake. My weird brain!

So that's enough of all my misery, let me hear from y'all. Yes I am a southern belle for sure.

Love and hugs,

Karen

Kazenmax's picture
Kazenmax
Posts: 188
Joined: Feb 2016

The same here. I'm 66 and I feel like I'm 90. I'm on Xeloda and Avastin. Nothing near as tough as you and I'm dragging. I just said To my husband last night that I don't feel as though I will ever be the same. It takes everything to get through the day. I'm so bloody tired all the time and I do NOTHING!

today I have an appointment at the hair dresser for a cut. I can t wait! Looking forward to actually getting out of the house.

Hang in there, sweetie. We are all doing the best we can. Know that we are with you.

K

KarenMG's picture
KarenMG
Posts: 67
Joined: Jun 2017

Hi Kaz,

How did the hair cut go? I want to go get a decent cut and some color. The gray seems to have come back with a vengeance. Time flies when you're having fun right? It's been too long since my last one. I decided I wanted a different hair stylist and finding one in my town ain't easy. They're either cheap and crappy or super expensive in the elusive "downtown" Greenville. It's gotten a bit big for it's britches, lol.

Don't under rate the chemo you are taking, it's all nasty stuff. Most anything that works was too much for me! I haven't done any chemo for over a year. It may not be the right decision but I'm doing what I can live with!

Thanks for your support and you hang in there too! We're all in this together!

Happy Sunday! Karen

Kazenmax's picture
Kazenmax
Posts: 188
Joined: Feb 2016

Scalped! I wear hair short but it's really short now. Lol. Sheer even got the clippers out! Hopefully when I'm done this chemo it will grow.

Peter_S's picture
Peter_S
Posts: 189
Joined: Oct 2018

The title of your post made me immediately que up Barbara Lewis "Hello Stranger" speaking of which Karen, hello stranger it seems like a mighty long time and it's good to see you back again. Exhausted or not you sound and seem pretty good to me, a welcome sight for sore eyes. Which is true except I think my eyes are the only part left on me that isn't sore. I can't offer any insight about the Y90 treatment except that I've read about it from many people right here on this forum who have benefited from it. Dental work is another story, I started having root canals when I was in my early 20's my teeth need a lot of help and right before cancer tapped my on the shoulder I was planning out a years worth of reconstruction, well, time for that later I keep telling myself as I whittle a pair of new choppers from a solid block of Pine. As awful as it is think how even more dazzling you're going to be with those new pearly whites.

 
I am sorry, truly sorry that you've been feeling poorly and a little jealous as hell that you got to see Hamilton, I couldn't get tickets let alone afford them so had to settle instead bu going to see the lesser known "Agnew" it was to say the least, disappointing. I give you so much credit, because you're out in the world, doing the best you can and that says so much about who you are and how strong and how inspirational you are, to me and to so many others. So you feel like you're 102, when I turned 60 people told me it was the new 40 I told them not for me, for me it's the new 109 and this was before cancer. So how about a race? you'll be the one ahead with the million dollar smile and I'll be the guy limping along far behind, trying to gum down a corn dog. I say it's a date and that bucket list dream trip of yours I'm glad to see that hasn't changed - because there's nothing like having a dream and getting as close to it as you can - and knowing you as I do at least a little bit now if anyone on this rock we live on can make their dreams come true, it's you, you Southern Belle you. It was the accent and the mint julep clutched in your hand at 9 AM that gave you away. Your fellow Night Owl is always thinking of you and wishing you only the best. You're doing great Karen - don't let em' fool you not even for a second. Peter
KarenMG's picture
KarenMG
Posts: 67
Joined: Jun 2017

Truly I am a modern day Miss Scarlet! I don't come here a lot because I say her famous line to myself, " I'm not going to think about that today, I'll think about it tomorrow!" That's me all day long. I've had a couple of days of unwanted, unsolicited drama. The difference this time is that since my breakdown at the dentist, I've decided that I'm not putting up with anybody else's shite, they can shove that garbage where the sun don't shine. So one long lost relative and one too close by got a good tongue lashing via texts and internet chat places. One apologized profusely and I forgave her. The other is as stubborn as a mule so when I told her that I would not be talking to her for a while, I got silence. Love hurts right? She's never ever been prone to apologize or admit fault...EVER, NEVER. At this point in my life, I see no reason for unnecessary suffering inflicted on me by a callus closed minded person. So there, I am spreading joy before noon! That's pretty phenomenal for me.

Need that mint julep already! Do you realize how strong that drink is? I've honestly never had one but when I read the ingredients, I laughed thinking about southern belles in the old days on their big front porches getting sauced up to deal with all their many children, nannys and mostly husbands! Hilarious!

Well Peter, I certainly wish you all the luck in the world with your surgery tomorrow. If I could I would take your place on that table, I think they left a few too many parts in me that should probably come out! I told my son that I wish they had taken the whole mess out! Be careful what you wish for though right?

I know that you will sail through this with flying colors. Just try to be nice to the nurses or those Beatches will turn on you and you will be lucky to get a pain pill every 12 hours! Trust me, I know! So not knowing if you will read this, I will write you a PM today. I think I need to go eat a bite of breakfast.

You know, you might not want to stand naked in front of a bright silver Christmas tree at the window. You might attract some strange new friends that might not be what you're looking for!!! hahahaha.

Hang in there, love you buddy! Karen

Trubrit's picture
Trubrit
Posts: 4517
Joined: Jan 2013

It is good to see you, though saddened to know you are having such a hard run of it. 

I have heard that Y90 can be a real trial. I almost had that done, when my insurance tried to scupper my liver ablation. Reading your posts, now makes me feel very happy that the ablation went ahead.

I admire you for going to a Broadway show. I remember the fatigue, when I had chemo. When I had to use a zimmer frame, and looked and felt like I was 100.  I'm glad you went, though you know you could have skipped, and people would have understood. 

I'm up for my routine blood work, and hope that the rise in CEA dropped.  I'm also about to turn 60 this month, and intend to celebrate, because statistics said I wouldn't make it. 

Take wonderfully good care of yourself. Plan those trips and fight the good fight. 

Tru

SandiaBuddy's picture
SandiaBuddy
Posts: 558
Joined: Apr 2017

There has been a theme in several of these postings lately about fatigue and depression during and after treatment.  No matter what the course, it is like getting run over by a steamroller for almost everyone.  For me, it accellerated the aging process.  But, I keep telling myself, it beats the alternative.  The only thing I can offer is hope.  Now, 15 months after chemo, my life is very near what it was like before chemo.  Yes, I have aged and I am more frail, but I have resumed normal activities and I find good in every day.  However, the adjustment is not immediate.  It takes some time.

Joan M's picture
Joan M
Posts: 309
Joined: Oct 2016

I recovered from that rather quickly, the pain in groin lasted about a week, and the tiredness/sick feeling lasted a couple of weeks.  I believe I responded to your posts when you were considering the procedure.  But just to let you know if you don't remember my post, I had 20 tumors in the right lobe of my liver and was inoperable.  The good news is that the Y90 cleared my liver of those 20 tumors!  It would still be clear if I hadn't had those nasty gallbladder problems that required me to be off chemo waiting for surgery that failed, and then again after the surgery and then for related procedures.  But even after being off chemo for 6 months [had one treatment in January 2018 that put me in the hospital, and then off chemo again for another 6 months for ERCP procedures in March 2018, and colon resection in Arpil 2018], the radiologist saw only one supspected tumor in the right lobe of my liver that turned out to be a small pocket of fluid.  Although a couple of my doctors think the Y90 caused my gallbladder problems, I think it was the microwave ablation that was done on the left lobe of my liver in January 2017.  I would definitely do the Y90 again if I need it.   

It's really crazy to hear about your dental problems after a medical procedure.  I got an infected tooth last October after being in the hospital for gallbladder surgery.  I bet the combined problems with the antibiotics and pain killers is making your recovery more difficult.  I get sick from antibiotics and really hate taking them.

Hope you feel better soon!  

Joan  

Annabelle41415's picture
Annabelle41415
Posts: 5810
Joined: Feb 2009

So glad to see your post and the great attitude you have toward everything you've been through.  Yup been there crying in the dentist chair just two weeks ago so know exactly where you are coming from.  Sometimes you just get to a breaking point thinking "what next".  So glad you have a plan to get your tooth fixed and feeling better about yourself.  I'm thinking that treatment itself just takes a lot out of you period even after you are finished with it.  You just find what is a normal schedule and pace for you and go with the flow. 

Hugs back!  Kim

KarenMG's picture
KarenMG
Posts: 67
Joined: Jun 2017

I've never been a fan of dental work, who is? It's just like one more thing that I just do not want to deal with anymore but avoiding it has it not so great rewards!

I've just had enough of all the treatments for sure. Feeling tired!

You are so kind and encouraging! Thanks for that so much, you are way better than me at that.

Take care Kim!

Trubrit's picture
Trubrit
Posts: 4517
Joined: Jan 2013

At one of my post treatment appointments with my Radiation Oncologist, he handed me the gown and told me to prepare for an exam - a rectal exam, which he does at every appointment. I didn't realize it until my husbnad told me later, but I shouted 'No!' I literally shouted at him. He and his assistant just stood there a minute.  Then he asked me why, so I told him that I was fed up with getting my backside poked around by at every visit, and was it really necesarry. He told me he believed that it was, and I replied that I had had enough. 

The exam didn't happen.  

Anyway, to make a long stroy no shorter; at a later appointment, while waiting for him in the exam room, I read my records, as I am want to do.  On the occasion of my refusal, he recorded 'Patient refused rectal exam due to exam fatigue'.

Exam fatigue. Treatment fatigue. Scan fatigue. Cancer fatigue.  We just get so fed up with the constant appointments, always something on the horizon.

Crying is good for you, so don't ever be ashamed. 

Tru

ron50's picture
ron50
Posts: 1697
Joined: Nov 2001

 I eally wish you the very best of luck with your latest treatment and really hope the the breaks start coming your way. Luck is the only thing that keeps me going after 20+ years of survival. Everything else has been cut out , fallen off or just stopped working , hugs and lotsa luck . Ron.   

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