Life Lessons from a Cancer Fighter!

Thanks for the update, Joe.
Thanks for the update, Joe. I have been wondering how you've been tolerating the treatments.

Steve and I agree 100%. The last thing he wants is to be treated like someone who is sick. As a couple, we don't want people to approach us like we have a problem. Hate the sympathy in peoples eyes. I find a lot of this depends on how Steve looks. If he is recovering from surgery or a complication and looks sick, then people treat him like he's going to drop at any second. It's annoying. It makes me think back to all the dumb things I've likely said to people. Back before I knew any better.

Steve also does not respond well to the smothering/motherly approach. Sometimes he will catch me staring at him, wondering how he is feeling. This bugs him too.

Hang in there Joe. Only 6 more to go! I've always enjoyed your posts. Nice to hear from you.

Chelsea

jen2012 said:

Me again...as a spouse i find
Me again...as a spouse i find it strange the things people say to me that they wouldnt say to him. Or the questions they ask...like since he just had surgery the question is "did they get all the cancer" or "is he cured" ive been able to put it off for now by saying we havent heard the path report yet....but how awkward. I do know i would never ask that question...and dont really know how to respond. But the too positive people..."oh he'll be fine" gets to me too. Hard to please maybe..

Sometimes people that I don't
Sometimes people that I don't even know that well will ask me, "I heard your husband has cancer. What stage is he?". Any question about the stage seems rude to me.

Great post

When I was first diagnosed, EVERYBODY looked at me like I was dying.  It got the point one day, when a sweet aquaintance burst out crying when she saw me, I just blurted out "I'm not dead yet'.  

At church people either avoid me or come up with either the 'you're dying' look, or stories about their aunt 'Who died of that'. 

In the end, I got up in front of the congregation, laid it out, told them I'm not dying (we're all dying of course), I'm not contagious, and all I needed from them were prayres and positive thoughts. 

I'm heading towards radiation (beginning of June). Whats it like to lay there? Does it hurt? 

db8ne1 said:

Radiation

I had radiation and chem prior to my resection surgery.  It obliterated the malignant tumor (radiologist and surgeon referred to it as an "ulcer" rather than a "tumor" once chemoradiation was through - as that's what it looked like on the post therapy endoscopic ultrasound). Further, there appeared to be at least one lymph node involved prior to therapy - which disappeared post therapy, as well.  Post surgery, pathology came back that all was benign.  So, the chemoradiation appeared to have done its job well. (I hope!).

As for the radiation - I received it 5 times a week for 6 weeks.  To enhance the radiation I received 5FU 5 days a week, as well.  I wore a pump attached to my power port. The radiation is not painful - you don't even feel it.  It lasts like 5-10 minutes.  Prior to receiving radiation you will spend about 1 1/2 - 2 hours in the "staging" process where they do scans and calculations to ensure they are fousing on the correct areas.  They will make a mold of your legs to make sure you are placed in the exact same position for each radiation session.  They told me to make sure I maintained by weight - so that they wouldn't have to "re-stage" during the process.  (REALLY?  That was the ONLY light at the end of the tunnel for me: potential weight loss!!!).  They will also give you a "dot" tatoo on your belly and each hip for the same purpose.

I believe that people that are heavier (I am) can get radiation burns more easily - as the rads have to penetrate more layers.  However, I had NO burns.  I used Aloe Vera and Aquafore religiously - to help prevent the burns and relieve the skin of any irritations.  I covered all areas from my hips to my pelvic area daily.  I got "boy briefs" for women to wear and pretty much covered any area that the briefs covered.  IMPORTANT:  Make sure your skin is clean, dry, and free of any products BEFORE each radiation session.  Apply products only AFTER radiation.

Also, when showering - use only basic soaps.  I used Ivory - as it was recommended.  Also, don't RUB dry.  Use a towel to pat dry and then either air dry or use a hair dryer (NO HEAT - AIR ONLY).  No heat or cold on radiated areas.

The last week they changed the radiation a bit so it was even more focused on the tumor. It was intense and I got very bad diahhrea - and subsequently a sore bottom.  I took advantage of sitz baths, vitamin e oil, A&D ointment, moist wipes, etc.

Radiation keeps working for weeks/months after they stop the actual therapy.  So, it took a few weeks for me to get back to "normal" after the radiation therapy stopped.  (Last day of chemoradiation was 2/13. Surgery was 4/11).

I hope all goes well for you.

Let me know if you have any other questions!

J

WOW!

Great advice and thank you so very much. 

I'm dong the 5FU for six weeks too. 

I've copied it and emailed it to myself.

I just posted this in a chat...

My beau and I plan things to do in spite of what the future may bring....

 

Wasted effort to worry about it...thumb your nose at it.  That isn't to say you should not acknowlege the reality of your fight, but after all is planned, etc, go for the joy!  (IMHO).

 

I asked to postpone one treatment, I remember, so that I could stay and extra 4 days in The Netherlands.  I still look at that pic (me, bundled up, standing in front of an historic tower in Amsterdam) snow all around me FREEZING my butt...but the biggest SMILE on my face!!!  And, I chuckle when I remember the plane ride to Holland....mask in place because the gal next to me was sick and kept sneezing and coughing.  Just after my meal arrived, she coughed in it.  I, being the sweet person I am (REALLY angry at this point), put my attendant call button on, and demanded a new meal, explaining that I was in treatment for cancer, with a weakened immune system, and what my seat mate (I didn't know her) had done.  

The gal left, and I didn't see her again until the seatbelt sign was lit for landing.

As you said, dearest....don't treat me as if I'm dying....I might just surprise you and survive!!!

 

BIG hugs, Kathi

Love your post!  Luckily

Love your post!  Luckily where I go to get treatments, the nurses are very positive.  Makes a huge difference in one's attitude.

Deena11 said:

Yep

I know what you mean about people saying things unintentionally that seem kind of uncaring.  I also had a "friend" who told me her friend had colon cancer and died.  This was right after I found out I had colon cancer.  I was already pretty terrified and her comment scared the poop (no pun intended) out of me.  I'm sure she didn't mean to scare me but I stopped talking to her after that.  I needed cheerleaders and fortunately most of my friends were very positive.  My nurses at the infusion center were also very cheerful and upbeat. 

Not sure why but almost the whole time I was going through chemo, I was always on the verge of tears.  I broke down at the drop of a hat.   When people were unusually kind, I'd start crying.  One time some little girls were in the lobby of the cancer center handing out goody bags to the chemo patients.  The bag had crossword puzzle books, little bottles of lotions, mints, a hand knit cap, and a hand knit blanket in them.  When I looked in the bag, I was so touched, I burst into tears.  I think it may have upset some of the girls but their thoughtfulness just made me bawl like a baby.

 

Emotions

My emotions are also close (if not on top of ) the surface. 

Part of my problem I believe is hormonal. I'm 54, and was having regualr periods until the FOLFOX started. Then it seems I whipped into the old menopause symptoms, crying at the drop of a hat, hot flashes, luckily no mood swings. 

As you know, you're not alone. 

Joe

Joe,

You're just great!  Thank you for a well thought out post.  You are one heck of a postive guy!

 

Aloha,

Kathleen

Great Attitude Joe

I know what you mean about people starting those "I had an uncle who was DX with blah, blah, blah... and yada, yada, yada he died a horrible death". I've found that often people know what to do when they hear someone has cancer so they come up with what might have been their only contact with cancer.

I noticed that I sort of "size-up" who's asking me about cancer or who I'm talking with and tell them what I think they can handle. Often I give the doing great, good, not bad, or a meh. I feel fairly normal. I know I won't feel like I did pre-cancer. Just saying...

:-)