My Wife tells our story from her perspective, On October 4th 2004 my husband John was diagnosed with stage 4 Cancer and was given 4 months to live. As a Hospice worker, I have seen all kinds of Cancer and cared for Patients. I had never seen such radical aggressive treatment offered to a human. The amount of surgeries, 2 types of chemo, the one I recall was 5FU which he wore a pump for 5 days straight and then off for some time and then back on along with Cisplatin but before all of that he under went a full modified radical neck dissection where they removed his jugular vain and most of the muscle in his neck and shoulder. The Radiation peeled the flesh off his neck and inside his throat, his pain level was off the charts. Seems he was cut down in the prime of his life at age 44. I often prayed to God to please take him. I watched my husband go through the darkest days of his life with pain beyond what most of us can’t begin to understand. Lets not forget the feeding tube he had put in because the flesh in his throat was fried off from Radiation. He also spent 30 days in Portland Oregon going through Hyperbaric chamber in order to save his jaw bone, but he ended up losing 30 % of. He can no longer work and is on SSD at age 49. I started this post off thinking about my Mother’s death and ended up writing about my husband, I guess the emotional scares are very much still alive for me. This post was really going to be about me losing my Mother 1 year after my husband’s diagnoses, she died after a short battle of Lung Cancer. She fought so hard and was so brave. I held her hand as she took her last breath. I felt that Cancer was slowing taking everyone I had loved so much. Now days, when my husband gets a lump or a rash, seems the old nightmares try to come back. I feel so blessed that God didn’t listen to me and take him when I begged him to. I look back at all of the pain in the past and feel we both have grown so much spiritually. Today we know without a shadow of a doubt that God was with us the whole time, even though I was sure he looked away and left us. Boy has our lives changed because of Cancer, today we can honestly say, it turned out to be a huge blessing for our family and our faith.

Thanks again for your terrific encouragement! You are my guiding light through all of this.
Hugs
Anna

Thanks for your commenton mucus. I don’t know if I really expected to find a miracle cure or releif but I thought I’d try. A friend (& a dr)said lemon breaks it up; add lemon to my water. That would rip up by throat. I e-mailed her back and asked if adding it to juice through the peg tube would help. She said ‘but if you have it in your throat, it will be down further also. The body is trying to protect itself by forming the mucus from an invasion. It will not hurt to put it in tube.’ And to use real lemons.
Thanks again, Sandy

Heidi, thank you for your comments and words of support. It’s been a rough road for me and I’m looking forward to being able to eat again and my life getting back to normal. Regards, Frank

Hi Heidi,
Thanks for your support I appreciate it. I figured something was up when here I am 2 months post neck dissection, 5 months post rads& chemo and I still cant talk or swallow…Oh well, hopefully it will help me recover quicker. CUz this is a sllllloooooooowwwwwwwww process.
TTYL,
Elena

Hi Heidi,
Just wanted to check in with you to see how youwere doing. Its been 2 yrs for you now. Is everything back to normal? Do you taste food? Is it hard to swallow? Hope all is well
take care,
elena cuomo

Hi Heidi,
I so appreciate your support. I don’t know what I would have done without you and Ron when I first started this process. You’re the greatest!
Anna

Thank you for your comments on my questions. I look forward to rare red meat and tasting it. Chewing with no taste is a chore, but so be it. I just starting that now.

Good to hear the mucus does eventually go away.

I did get to go home today and loving that. Now for some patience and work. Do you have all your taste back at this point?

Thank you for your prayers and hope. I will do the same for your continued sucess. Mark

Hi Heidi thanks for responding how are you doing sarah.

Hi Heidi,

Thanks for your good thoughts today. Yep, I’m starting to feel like a cancer warrior, indeed. :) I can’t believe that this Wednesday I’ll be half way finished with treatment.

Just returned home from chemo and so far no side effects. They usually start kicking in for me on the second day as they give me two types of anti-nausea drugs via iv.

I hope you’re doing well. It was great to hear from you!

All the best,
Kim

Heidi,

First my apologies, I finally read all your posts on your journey through tonsil cancer. I recall you calling me a hero when I posted my story and I recall responding.

Thanks, but I’m not the hero. The real heroes are the doctors, nurses, and all the technicians that work so hard to keep us going until we win.
We are the survivors, we’re the fortunate ones to have won the war with cancer. Once we go home and recover, this experience is just something else to add to our resumes. The heroes continue on helping our new family members fight their battles and fight for a cancer free world. Those are the Heroes.

Ron

Posted on April 6, 2009 at 10:55:38 AM by roncancerfree

I was new and didn’t know to respond on your blog so you may have never seen it.

Congratulations on two years cancer free, I salute you my friend and pray we stay cancer free and are able to support all those who need us.

Warm regards

Ron

Hi Heidi,

Thank u so much for your thoughts on my recent post. I think its fantastic that you spoke your mind even though you disagree with my message. I can tell by reading your blog that you are very intelligent and also very different than me in the way you see life. For example, I have started writing without even being diagnosed. As of now, I have only a tiny bit of hope that I am wrong but right now Im pessimistic. I must also say that your story is very comforting and inspiring, and I hope you get your singing voice back soon, keep training those vocal chords! As far as regret goes, it seems that we also have a different way of looking at the meaning of that. Many people I know, like you, say they have no regrets in life and they would do it all over again just the same. I see things differently though. However, not because I wish I was a different person, but because I made many decisions which were just plain stupid and did not make me a happy person after it was all said and done. So in many ways I do wish I could turn back the clock to 1993 and do it all over again. But its not just because of the possibility that I may be sick, Ive been saying that for many years. Although now, the real possibility of having cancer makes me feel that way more than ever. My reality is that I was too selfish growing up, always wanting more, and always thinking the grass is greener on the other side.

Carlos

Hi Heidi,

Thanks for sharing the hair related info last week and for your good wishes. I’ve made it through my first cycle of chemo and a week and a half of rad. I was pretty nauseated last week, however, that passed on Friday. Hope you are doing well!

HiHeidi,

Thanks for the tips I will run to the pharmacy today. I thought I’d be able to deal with the dry mouth, but that is whats also making me nauseas I believe. Did you have the PEG tube during treatments?? Did it bother you at times?? This thing is driving me crazy. They say I will need it but right now its a big inconvenience. Ughh…Im going to read your blogs. I havent done so yet. Well you take care and thanks for the help. Elena : )

Hi Heidi,

Thank you so much for sharing this information…and for the thoughtful words of encouragement. It is very helpful to read your comments. I’m so glad you said I CAN do this…because there are moments I keep wondering how I’m going to get through all this. I thought maybe if I just focus on each day….7 weeks sounds so long. My mom is coming from back East to stay with me through my treatments…this is a big relief for me.

I’m glad you mentioned the PEG…I get mine inserted on Friday. I’m really pretty nervous about it, however, have read many comments similar to yours saying that I will be happy to have it.

Thank you for offering your e-mail…I’ll definitely keep you in my contact list. :)

Hello Heidi,

Thank you for the thoughtful comments. It’s nice to meet you, too! It’s really great to hear from someone who has completed the same treatment plan I’m about ready to go through. I’m glad to hear that you’re doing so well! Congrats on your 2nd anniversary.

Yeah, I’ve read several of the blogs here….sounds like cisplatin plus chemo can be a bit rough. I’m really nervous about the treatments, however, I’m up for about anything that will give me better odds for the cancer not returning.

May I ask you…were you able to drive yourself to some or all of your treatments? I’m in the process of lining up a driver, however, wondering if some folks are able to drive themselves to appointments. I worry about having nausea and fatigue…and perhaps being too tired to drive myself.

You take good care too and thanks again for your kind words.

Best Regards,
Kim

It is great to read you are doing so “well” and it is always refreshing to read a positive post. But of course we all need to share the hard stuff too. :) Hope things stay good for you ! BARB

Thank you so much for your words of support and kindness. I am glad we met here and I hope lots of great lemonaide comes our way!! I will continue to follow your posts. Best wishes, Frank

Thank you for your kind words…Yes I know how lucky we are and I also know I want to live life one day at a time ! Reminds me of my AA days :) I found a mouth wash called Peroxyl it does burn a little at first but it helped me all I can do is tell you about it…Ric

WOW you and I must have the same doctors because I’m still standing after my second fight with cancer. First I lost my Esophagus and then 5 years later neck and tongue cancer and I’m now once again cancer free and loving it…I hope you are eating and doing well….Ric