My Story of Cancer Therapy

dk52

My Story of Cancer Therapy & Recovery

Summer of 2015 - I was my father's caregiver for a few months.  During that time I did not get enough sleep. What I know now is that I became more vulnerable to cancer because I wasn't taking care of myself.

Fall of 2015 – In October I notice a lump on the side of my neck that doesn’t go away – thinking it was just “swollen glands”.  

Late December 2015 – My first appointment is with a “head and neck doctor”.  He suggests a fine needle biopsy - got that done a week later.  Results are ok; no cancer, but he’s not convinced and wants to remove the swollen lymph node.

Late January 2016 – Doctor/surgeon removes lymph node and sends to lab.  Results reveal squamous cell carcinoma already at 4^th stage!  I think, “how can that be, I feel fine”.  I was under the impression that anyone who had stage 4 cancer would have many other symptoms other than a small lump.

1^st Week February – I meet with the oncologist and go over the plan.  Up to this point I thought I would only need radiation therapy, but now discover he wants to add chemotherapy also.  Sounds awful.  And on top of that, 5 days/week of radiation and 1day/week of chemotherapy – for 7 weeks! (I had no idea how bad this would be)

3^rd Week February 2016 :
 1^st of 7 Weeks of therapy – Start chemotherapy and radiation on Monday. By this time they’ve made the mask for my head – to hold it in place during the 2 minute radiation therapy each day. (Glad I’m not claustrophobic) Didn’t notice anything that first week of radiation; meaning I didn’t’ have any side effects yet.  Chemotherapy was interesting.  They set me up for an IV and inject a saline solution to hydrate me.  Then the nurse brings out an IV bag with a skull and crossbones label on it!  She’s wearing gloves and the bag is double wrapped – must be dangerous!  I find out its called Cisplatin.  The liquid is brown.  I watch it going through the IV tube to my arm and the instant it gets in my vein I have a strong metallic taste in my mouth.

2^nd Week – I’m not feeling very good, eating with some problems, and don’t feel energetic at all.  The oncologist office is pushing me to drink protein shakes loaded with fat because they know I’ll be losing a lot of weight.  I’m spending more time browing the internet about cancer therapies.

3^rd Week – I’m noticing more ill side effects.  A little harder to swallow, and this is because the radiation is gradually frying the lining of my throat.

4^th Week – It’s harder to swallow.  I’m not eating much and choosing foods that are soft. I’m feeling like a zombie, sleeping more and when I’m awake not really ‘with it’. I’m staying at home almost all the time and searching the internet about this cancer.  I discover there were other alternatives to radiation/chemo therapy, but since it was stage 4 there was no time to delay.  Amongst the many alternatives was a carrot juice regime – very interesting!  I add that to my diet.

5^th Week – Can’t swallow anything that’s not liquefied.  Drinking protein shakes, carrot juice, and smoothies from the Tropical Smoothie Café.  My weight has dropped 30 pounds already and the oncologist is pushing me to drink more of those Ensure shakes each day and warning that a feeding tube may be necessary if I lose too much weight.  My thinking is dull and I have no energy.  I’m battling constipation which is a side effect of this therapy. I’m wondering how I’m going to get through the next two weeks.

6^th Week – I feel really bad.  It’s getting hard to swallow anything – even water.  The shakes from Tropical Smoothie Café are hard to drink.  Carrot juice is almost too thick. The protein shakes I have at home also too thick.  I gag on them a lot.  The valve that closes my windpipe (?) is not working well now and so some of the fluids I drink go down my windpipe and I have to cough it up.  I feel utterly miserable and I think a lot about quitting, even though I only have one week left. I stay in the bedroom most of the time, and I can tell my supportive and loving wife feels terrible for me, but she can’t do anything to fix it.  The nurses tell me that many people can’t go through 7 continuous weeks, but I’m determined to finish the battle. I’ve lost 40 pounds now.

7^th Week – I know the therapy is almost over, but I wonder if I’m going to survive. One day I have my friend drive me to therapy because I know I can’t.  Swallowing anything is hard work, followed by a lot of gagging.  My mind is constantly in a fog.  April 15, 2016 is my last day of therapy.  The rest is uphill, right?

1^st Week of Recovery – I feel even worse and swallowing is even harder yet. I sleep a lot, but only a couple hours at a time.  I wake up gagging for no reason. My mouth is dry because my saliva glands are ruined.  Everything tastes bad.  Doctor says my taste buds may come back in a couple years or never.

2^nd Week of Recovery – Not much change from last week, maybe worse.  My throat is so sore that I feel it constantly.  It hurts to drink anything and it has to be cold.  I haven’t been able to drink anything hot for at least a month.  One of the nurses mentioned that 7 weeks of radiation on my neck and throat is like getting sunburned day after day for seven weeks – you can imagine what’s that’s like, or can you?

3^rd Week of Recovery – It’s the first week of May.  It’s hard to remember when I started feeling better.  I’m pushing the liquid drinks a little more. Not feeling worse than last week.

4^th Week of Recovery – Feeling a little better.

5^th Week of Recovery – I know I’ll recover now, but it will be a long recovery;  steps will be in small increments.

6^th Week of Recovery – I’m starting to think about how I can speed up recovery. I lost 45 pounds and back to my athletic weight as a senior in high school; but I’m weak and need to build the muscle I lost.

From June 1^st and on I worked on projects on my house and yard each day.  The first day I only lasted 10 minutes. By the end of August I could work outside most of the day.  My saliva glands were still functioning 10% at best. Taste is still terrible so I select what I drink/eat by nutritional value.  By now I’ve been using a juicer to juice 5 lbs of carrot juice along with an apple and drink 16-32 ounces per day of that mixture. I make my own protein drinks each day; can’t eat anything dry without chasing it with water.  Brain fog is greatly improved by the end of August.

Racing forward from August 2016 to February 2019 – taste has come back at least 80%. Saliva glands maybe 50%, but still get dry mouth. I had infection in my mouth where the radiation was strongest and had to have 3 teeth pulled last summer.  Since then I’ve been using homemade colloidal silver as a mouth wash and the infection has not come back.  I work out at the gym and have added 15 pounds from my lowest weight.  I feel pretty good…….but –

I just got word from my doctor that an ultrasound test shows a nodule on my thyroid that he wants to do a fine needle biopsy.  I recently remember he told me in 2016 that a lot of people get thyroid cancer after radiation/chemo therapy.

I’m a Christian and have a strong faith in my Lord.  He will never leave me or forsake me. I’ll update as this goes on.

 

wbcgaruss

What a fight it was

That is a perfect description of what a lot of us went through for treatment. Prayers your way and praying the biopsy shows you have nothing going on. Sounds like you recovered pretty well and are back at it but as you said it is a long slow process. God Bless

dk52

wbcgaruss said:

What a fight it was

That is a perfect description of what a lot of us went through for treatment. Prayers your way and praying the biopsy shows you have nothing going on. Sounds like you recovered pretty well and are back at it but as you said it is a long slow process. God Bless

So many things I wish I knew before I started rad/chemo therapy

Thanks for your reply.  Too many things to remember in one post so I may add more.  God bless you too

wbcgaruss

Yes There are Many Things

We wish we had known or thought about before starting cancer treatment. But I would say when this diagnosis hit you it numbs you and you really don't think about a lot of research on the net because when you start looking the sheer number of stories, angles of treatment and varied opinions boggle your mind. And at this point we are thinking, when we compose ourselves we are in a situation where time matters and we can't fool around trying this or that we need to do this in one treatment option and get it done. I had a team that seemed very good and knowledgeable with a very positive attitude that we are going to beat this. I am thankful for that. As far as after effects from treatments do you turn down one from the other or change this for that because of possible after effects? When you look at the facts and numbers they tell you some are affected more than others but will you be one of them? So we are at a life-threatening crossroads and we choose what seems to be good for us as far as treatment options to get cancer defeated and see how we come out after treatments and strengthening ourselves to deal with it. God Bless

dk52

Got Results On Thyroid Nodule Biopsy

Got a call saying my biopsy showed the nodule on my thyroid is benign. Doc wants another ultrasound in a year.  I must have had some tension during the wait, because now I feel better; more energetic.  I'm thankful to the Lord and the many friends/family that prayed for me.  

nancytc

Wow Good Job!

I agree, sounds so familiar although I opted for a feeding tube on week 3. It was a lifesaver for me....no regrets. All the info does become mind boggling and I am so thankful to my family and friends who lifted me up in prayer. My adult children took turns giving me 24 hour care for a good 8 weeks. Amazing love. I have purposely forgotten much of the trials as this was truly a rough road. Life is mostly back to normal enough and I am cancer free hopefully forever!!!

 

dk52

"Mostly back to normal"...except for swallowing

Does anyone still have trouble swallowing?  The size of my throat must have shrunk because it is still somewhat difficult to swallow dryer foods; its has to be small amounts and often I have to chase it down with water.  Saliva glands still not functioning at 100%.  Maybe it's scar tissue.  After all, it seems like 7 weeks of radiation/chemo would be like going to the beach and getting sunburned day after day for that long. 

wbcgaruss

dk52 said:

"Mostly back to normal"...except for swallowing

Does anyone still have trouble swallowing?  The size of my throat must have shrunk because it is still somewhat difficult to swallow dryer foods; its has to be small amounts and often I have to chase it down with water.  Saliva glands still not functioning at 100%.  Maybe it's scar tissue.  After all, it seems like 7 weeks of radiation/chemo would be like going to the beach and getting sunburned day after day for that long. 

Trouble Swallowing-

Yes, I had trouble swallowing. After treatment, I was on a feeding tube for about 4 or 5 months but could then start eating again. With the lack of saliva, most of us have you will have to sip some liquid with probably all your food and especially dryer foods and I find soda works best for me with food and for other folks, it's water or something else. You are better off if you make up your mind that you should chew stuff longer and make it smaller to help to swallow because from here on your throat is probably not as flexible and stretchy or as large as it once was.

You may also want to consider throat dilations where they slightly stretch your throat a little bit at a time to give you more opening. They have to do it a little at a time to avoid tearing any throat tissue. I got a piece of turkey stuck in my throat and it wouldn't go down or come out and had to go to the ER to have it removed. I also had some trouble with certain pills getting them down if they were a little big or chalky in texture.

After the Turkey incident, I had four throat dilations to reopen my throat a bit so I could swallow again and not get things stuck. Helped me a lot but I still have to chew food really well and add liquid but I am very thankful I can eat and swallow.

I had my dilations done by the fellow who took the stuck turkey out he was a gastroenterologist and actually in the same office that put in my feeding tube and also you can check with your family doctor for his or her ideas.

God Bless-Take Care

dk52

wbcgaruss said:

Trouble Swallowing-

Yes, I had trouble swallowing. After treatment, I was on a feeding tube for about 4 or 5 months but could then start eating again. With the lack of saliva, most of us have you will have to sip some liquid with probably all your food and especially dryer foods and I find soda works best for me with food and for other folks, it's water or something else. You are better off if you make up your mind that you should chew stuff longer and make it smaller to help to swallow because from here on your throat is probably not as flexible and stretchy or as large as it once was.

You may also want to consider throat dilations where they slightly stretch your throat a little bit at a time to give you more opening. They have to do it a little at a time to avoid tearing any throat tissue. I got a piece of turkey stuck in my throat and it wouldn't go down or come out and had to go to the ER to have it removed. I also had some trouble with certain pills getting them down if they were a little big or chalky in texture.

After the Turkey incident, I had four throat dilations to reopen my throat a bit so I could swallow again and not get things stuck. Helped me a lot but I still have to chew food really well and add liquid but I am very thankful I can eat and swallow.

I had my dilations done by the fellow who took the stuck turkey out he was a gastroenterologist and actually in the same office that put in my feeding tube and also you can check with your family doctor for his or her ideas.

God Bless-Take Care

"Mostly back to normal"...except for swallowing

Thanks for your story.  You have tips that I was not aware of - mainly: throat stretching.  I'll ask my doctor about this..

dk52

nancytc said:

Wow Good Job!

I agree, sounds so familiar although I opted for a feeding tube on week 3. It was a lifesaver for me....no regrets. All the info does become mind boggling and I am so thankful to my family and friends who lifted me up in prayer. My adult children took turns giving me 24 hour care for a good 8 weeks. Amazing love. I have purposely forgotten much of the trials as this was truly a rough road. Life is mostly back to normal enough and I am cancer free hopefully forever!!!

 

Amazing Love

What a sweet story of the care your family gave you.  Glad you shared that with us!

CivilMatt

Cancer Story

dk52,

Is that a picture of you as your father’s caregiver?

Letting yourself get “run-down” does not help the natural anti-cancer defenses we all hope to have naturally, but that little cancer bug was probably there for a while hence, the stage IV diagnosis.  

I was stage IVa scc, bot, 1 lymph node, hpv+ (surgery, radiation  & Erbitux) and all I had was a lump  on the left side of my neck. NO PAIN or discomfort whatsoever. Very typical of H&N members on this site.

I have been drinking, on average, 10 glasses of water, ice tea, milk (whatever I have) for the last 7 years. It often takes me 3 glasses of liquid to eat a meal.  And just for kicks, I counted the number of times I chew a regular bite of food and a piece of meat and they numbers are 130 times and 350 times respectively. Also, I take very small bites as the turkey removal doctor has all of our names on his list and I do not want to play his game.

I was glad to see you jumped from August 2016 to the present.  Life is short and I was looking at getting something to eat before continuing on, but there is no need.  I take 2xylemelt tablets at bedtime every night, it helps my dry mouth. If I do nothing my mouth will dry it’s self-shut and that is not a good thing.

My thyroid took early retirement caused by the rads I have been told, but I Hve not read much on here about Thyroid cancer after rads & chemo.

If you have the time (I know you have the information) you might jot down some of your history on your home page.  Then, we can all click on your picture and get a run down on you.

Take care,

Matt

dk52

Implants after radiation

If you are wondering about dental implants after radiation therapy go to this thread - https://csn.cancer.org/node/318527