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The waiting game never gets easier

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

The last two weeks have not been the easiest.  Two weeks Tuesday I ended up in the ER with severe chest pain on my left side.  After many tests for a heart problem, they sent me for a CT scan to rule out a blood clot.  That came back with the news that a tumor that I have had beneath my breastbone for quite awhile and that had been dormant, had decided to grow.  The ER Dr and the radiologist both thought that the pain was from that.  The ER Dr. Called my oncologist'S office to tell them and they called back later that day.  I saw him last Monday at my regular visit and we went over the CT scans.  I was hoping that maybe since it had been two people that. Had never seen me before looking, that maybe they had mixed something up.. but Oh No.  this once peaceful tumor had wrappped itself around my esophagus and my Aorta.  It is too close to to many important parts of me for surgery.    My oncologist had already been lookiing at options.  Radiation is a posibllity, if the growth is just the one tumor, but if the other two have also grown, chemo will need to go first.  Had a CT scan on Friday to try and figure that out.  Since I have used up all of my normal chemo options And probably can't use Keytruda anymore, this is a puzzle.  My oncologist did find one treatment that has been through phase II Endometrial cancer with some success with keeping tumors stable.  It is called Temsirolimus and is not exactly a chemo.  My insurance has approved it  I will see him again on Thursday to go over everything.  He seems in a hurry to get starte.  He called me a miracle and a tough cookie.  It sure does answer the question has to what is causing the pain in my chest and upper back.

on a happier side my new orthopedist was able to do the radio frequency ablation on my lower spin.  Maybe I won't have Pain there anymore.

i am so thankful tha I have A doctor that is willing to keep looking and not ready  to stamp me expired.  There is always hope.

Hugs and prayers, Lou Ann

henhill's picture
henhill
Posts: 123
Joined: Aug 2016

Lou Ann- You definitely are a trooper.  I had a similar summer and I feel you.  I am on Taxol/Avastin every week and on my knees from it.  I am soooo tired all the time.  I had a golf ball tumor on my neck and a couple in my abdomen hurting 24/7 all summer.  Now, my mother is out in Nashville passing and I absoluteky cannot travel.  I am heartbroken about it,  Cancer sucks all of the time!

I pray that your new treatment will keep you well.  Stay strong.

 

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

imhad a tumor in my neck about that size or a little larger

  the radiologist was able to able to radiate it and it has all but disappeare, at least for now,  I had a terrible time on Avastin. Don't know how you handle it with Taxol.  So sorry to hear about your mother.  We have a similar situation with my mother in law in St. Louis.  I can't travel and my husband won't leave me and  go himself.

Hugs and prayers, Lou Ann

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2803
Joined: Mar 2013

Lou Ann - you are a true inspiration and definitely one of the strongest people I know.  Please keep us posted on the new drug possibilities and it sounds like you have a wonderful medical team.

henhill, my heart is breaking for you.  I just lost my mother and understand your pain.  

MAbound
Posts: 1086
Joined: Jun 2016

It sounds like it's just been that kind of year for a lot of us hasn't it? I didn't get to see my father before he passed in January because my WBCs were too low after radiation to travel. He had succumbed to norovirus sweeping through the nursing home he lived in. My dear son and daughter were able to jump on planes to be there holding his hand as he left and I take comfort from him not being alone, but I so get how it hurts to not be able to say good-bye ourselves.

Then my mother-in-law had a massive stroke in July and left us a few weeks later, just shortly after my husband had a bad fall and fractured a vertebra in his lower back. It all just complicates an already complicated life, but we keep on telling ourselves we'll get through it, afterall, what other choice do we have?

My love to all with whatever you're having to cope with whether it's this stupid cancer, family crisises, disasterous weather (anybody know how Abbeycat is doing?), or a down mood. We all have our crosses to bear, but we hang in there for those good days!

EZLiving66's picture
EZLiving66
Posts: 1436
Joined: Oct 2015

I am so sorry for you two wonderfu ladies.  But I am also amazed by your spirit and determination.  All my love and good thoughts go out to you.

Love,

Eldri

ConnieSW
Posts: 1506
Joined: Jun 2012

you definitely are a miracle and a tough cookie.  I'm keeping you and Henhill in my thoughts. 

Nellasing
Posts: 529
Joined: Oct 2016

You two are really really going through it!!!  I'm so sorry to hear this and my prayers are with each of you and your families.  I know there are no words- know we are all drawing near and sending love <3  ((((HUGS))))

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1687
Joined: Jun 2015

Lou Ann and Henhill,

I just wanted to thank you both for continuing to post your journey for us. It is through this that we all learn what to look for, what to ask our doctors, what to expect and it gives us the opportunity to hold you close. I'm so sorry you are having to deal with it (Nella is right, no right words!) and I hope and pray that things get better sooner than later.

Love and Hugs,

Cindi

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

Prayers for all of you. 

Amatullah
Posts: 36
Joined: Jun 2017

My heart goes out to you who are struggling so much, but determined to fight cancer with everything that can be used to fight it.  I'm too new to this battle to know real success or failure, but I find comfort in the indomitable spirit so many of you show when fighting this terrible disease.  I do worry that I'm not as strong as many of you, especially since they had to lower the strength of my chemo in the second round.  But I know we never know how strong we can be until we need that strength.  My prayers are with you all.

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

You are strong.  I had to have my chemo reduces a number of times.  Strong is making it through the day and getting up the next day to start all over again. Lou Ann

Amatullah
Posts: 36
Joined: Jun 2017

I'm doing radiation for six weeks and then chemo again and this everday, 5 days a week is almost harder than the chemo.  I've got 2 weeks down, then the internal stuff that I refuse to think about and then I'll be back to chemo for Thanksgiving, sigh.  I don't know which thing I want to whine about more, lol!!

henhill's picture
henhill
Posts: 123
Joined: Aug 2016

Thanks also to everyone for their kind words.  

BTW-  I am finding the routine gets a bit easier each time,  I am less yired and nauseous each week.  My hair is starting to fall out though, my worst fear about this treatment and its winter coming,  no less.

.  

Amatullah
Posts: 36
Joined: Jun 2017

It was kind of a big deal to think about losing my hair right in the beginning, but once I did my sense of humor kicked in.  I still have enough hair to have a short spikey look and it makes me laugh.  Just wear beautiful or bright and happy looking scarves or caps and people will complement you on them and not even think about hair.  Wear knit caps when it's cold.  Pretty comes from our spirit and shows in our eyes.  I'm glad your chemo isn't as hard!!  

henhill's picture
henhill
Posts: 123
Joined: Aug 2016

This isn't my first "hair rodeo',. i lost it before and iust hate the whole thing!  Now I am sick as  dog all the time and I look like Beetlejuice!  Grrrrrrrrrrrr

Soup52's picture
Soup52
Posts: 903
Joined: Jan 2016

Lou Ann and Henhill my heart goes out to both of you! I send hugs and love! You are two determined ladies.

oldbeauty
Posts: 277
Joined: May 2012

LouAnn, I am sorry to learn of your latest trial.  You are so courageous and thoughtful to share so much information with us.  It is so useful.  It would seem that you are one of those "good responders" that doctors talk about.  High praise to your doctor for doing his research and coming up with a new drug for you to try.  Best wishes as you negotiate this new course.  And best wishes to your great family that is with you on your journey.  Oldbeauty.

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

LouAnn, you give us hope in how you deal with every up and down that this diagnosis has thrown your way. Thank you for that and for sharing your experiences with us. I'll be sending you out positive thoughts and vibes on Thursday. Keep us updated on how you are doing. Kim

pinky104
Posts: 574
Joined: Feb 2013

Wow, I thought I was bad off with my tumor wrapping itself around my ascending colon last March.  You definitely have it worse.  My prayers are with you.

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