Greg's Cancer Blog
February 28, 2010
I had a 4-week follow-up visit with my oncologist on Friday, February 26. Blood counts are still low. Some are lower than they were four weeks ago. They gave me an injection of Neupogen. That’s a drug given to stimulate production of blood cells. Was given three other injections of Neupogen at times during chemotherapy. Normal white blood cell count should be 4.5 to 11.0. Mine is 1.0. That means I am at higher risk for infection so I am staying away from crowded places. Most of my other blood counts were also below normal and some were above normal. I’ll return to the oncologist again on Monday for another blood test to see how the Neupogen worked. The doc said it’s because my body is still regenerating itself after the radiation and chemo treatments.
After four weeks out of radiation and chemo I am still taking all of my meals through the tube. I have been experimenting with some “real” foods. Diane (my beloved spouse) made some mashed potatoes, gravy and ground beef for me to try. I was able to eat some of it and also ate three strawberries. No problem swallowing as long as I drink water with every bite. Still am not able to produce saliva and have constant dry mouth. My taste is slowly returning. I am able to get a very slight taste of the food. I started taking a Zinc supplement along with a multi-vitamin every morning. Someone in the blog suggested Zinc to help restore taste. As mentioned in my previous posts, I’ve also been watching a lot of food-related shows on the Travel Channel and have been taking notes about places I want to visit when I am able to taste again. There are a couple places I want to visit in the Chicago area that supposedly make some of the best Chicago Hot Dogs.
I feel fatigued and weak most of the time. That’s caused by the low blood counts. The doctor said I should think about another round of chemo that would involve a 4-day stay in the hospital. During this time I would be infused with a couple of chemo recipes 24 hours a day for 4 days straight. The reason is that one of my cancerous lymph nodes had extra capsular extensions, meaning it is possible that some cancer cells entered my blood stream and might still be floating around my body. The chemo infusion that I received, Cisplatin, was mainly to assist in the radiation and elimination of cancer cells in the head and neck area. The doctor said I should think about the 4-day chemo thing, but would not get it as long as my blood counts are low. I don’t think I’m going to do it. I think I’ll take my chances without it because I really don’t want to have chemo again. Just don’t want to endure the side effects.
Had a hearing test on Wednesday because I have been having constant ringing in my ears for the last 4 or 5 weeks. It gets so loud at times that it is difficult for me to fall asleep at night. Turns out that I have lost some hearing in the higher frequency range and that is why I hear the ringing. The doc believes it is due to the chemo. I will meet with the doc again next Wednesday to talk about hearing aids in both ears. So far, the permanent casualties for me in this war on cancer have been the loss of salivary glands and some loss of hearing. I would consider these as minor losses compared to the casualties experienced by many others.
I don’t know if I will ever really learn patience, but I am getting a lot of exercise in practicing it. What else can we do? It helps when you have faith and hope for better days, and something to look forward to…like a visit to Famous Dave’s for some baby-back BBQ ribs.
Wishing you all the best this life has to offer,
Greg
4 Weeks out of Radiation and Chemo, 
10 comments)
Hi Greg,
Glad to see you are continuing to make progress. The next ten weeks will be very trying. That’s how long it takes til your throat heals enough to start nibbling food. I become quite morose during those 10 weeks cause it seems to never end. Don’t get discouraged! Just hold on. During that time, my PEG had become dislodged so I had to drink Walgreen’s supplement (cheepest I could find) four times per day for 2 months. Its great that your wife is working to tempt you to eat. I am the one who found the tip on zinc and I can definitely say today that it did help alot.
Just keep your chin up and keep thinking good thoughts.
Hugs
Anna
Posted on One more thing – I am taking Evoxac for saliva. It does not help alot but you do notice a difference. I also found chewing gum, once you can tolerate it, induces the saliva glands to function so while I am actively chewing, I get a ton of saliva but it stops when the chewing stops. My husband said its like doing physical therapy when a muscle is damaged. You have to retrain it to work again. Toodles!
greg, i know how you feel my last radiation was
jan. 19th and that is when i lost the most weight
and felt the worst for awhile, thanks for the tip on zinc what amount do you take? i am going to walgreen today and i will get some no one at the doctor told me about that? i have to find some
multi vitamins that are easy to swallow as the one a day i have are horse pills.. i am glad i started on lexapro to help me get thru all of this
as you think wow its all over, but it really isnt
i think it is so funny that everyone that cant eat on this blog watches the food network shows
i do too and wish i could have some of that stuff
they make,, i am eating slowly watermelon, soup,
yogart, applesause, etc. but boy nothing taste correct like it should so i dont eat much.. so still on my carnation 560 shakes 2 a day.. my friends and family have been great and the church
is even having a mass for me on march 9th for healing and it works out great as my birthday is march 10th.. i guess i wont be having any wine this birthday.. doctor said i could but it proably wont taste good anyway.. one question, do you have a hard time sleeping at night? since i went off of all pain meds i seem to toss and turn, and fianlly get up around 1:00 and take some benedryl.. i dont blame you about the chemo again, i dont think i could take any of this again.. i will keep you in my thoughts and prayers
if you need to please e mail me at rlwcpa@execpc.com diane w from wisconsin
Posted on Greg,
You are doing what you gotta do. That low count is scarey but the shots of nupregen are worse, they hurt don’t they? I bet you didn’t notice, being so tough and all. Just kidding, trying to get some laughter. I would think the food channels would be tough if you can’t eat, but it gives you a goal and that is perfect. I think mashed potatos and gravy are the perfect cure for anything. Another good one that you might be able to get down would be a cream of potato soup. Go all out and if your wife makes it mix it with whipping cream and that will help you get calories in as well as make it melt in your mouth. Watch your temp. as your count is rising, that is the first signal of a lurking infection. You are doing awesome! Love to all, Sharron
Posted on Greg, Sorry to hear about the low blood counts. I hope the Nupogen injections help. Also sorry to hear about the hearing loss. I am 3 weeks into treatment and experience a slight ringing but only occaisionally. I did mention this to my chemo oncologist and he is going to keep track as it may affect the type of chemo he prescribes. Tomorrow is my 2nd round of chemo.
I’m glad your wife is experimenting with foods for you. At this point, the only foods I can tolerate are Cream of Wheat, Cup O Noodles and cream of potato soup. Hang in there, Greg, you are an inspiration to so many of us who are following this horrible road after you.
Hugs, Chris
Posted on Greg—
I was hoping we’d hear from you soon. Thanks for the update. It sounds like you are making progress and I hope as time goes on, you will be eating more and more foods that you are missing right now. I’m a big foodie and I was so anxious to start eating all the things I love again after my chemo/rad ended. But it takes some time, so don’t get discouraged. It sounds to me like you are a fan of Anthony Bourdain. I love the guy and watch his program often. It makes me want to go around the world and try lots of different foods too! But the ribs at Famous Dave’s sound good too!
Please let us know what your next round of blood work shows. I hope you will see some improvement in your counts, as that will definitely make you feel better. Take care and I will be thinking of you and keeping you in my prayers.
Martha
Posted on Hi My Friend! I am so sorry to hear about your blood counts…that is scary. Mine only went that low during treatment. I pray the Neupogen does the trick. I was also sorry to hear about your hearing loss….geez you’ve had a time of it! They had warned me about the hearing thing but fortunately I never had any problems with that.
Oh I think I saw those Chicago Hot Dogs…wanna meet up there when we can eat again! LOL Not sure when that will be for me…sounds like you’re doing much better in that department! I am going to get some zinc and give that a try though. The few things I have tried it seems that the first couple of bites I can taste..slightly…and then nothing!
I know what you mean about the patience Greg! Only thing is we have no choice!
I’m keeping you in my prayers Greg! You’re a strong person and we will get through this and be eating again before you know it!
Big Hugs and lots of smiles!
Trice :-)
Posted on Hi Greg,
Im so sorry to hear about all these side affects you are going thru. Isnt it weird, but as I went thru rads day by day, it didnt feel as bad as what the affects can be. Hope Im making sense. But really…our hearing…who would think??
Well I know youare gonna get thru all of this and YES patience… I was sooooo anxiuos. I thought OK noo more rads, Im ready to heal. Then we learn it doesnt move as quickly as we’d like.
BUT I admire your strong FAITH in GOD and HE has already HEALED you! Its just a matter of getting thru these hurdles.I can say this…IM 6 months out of treatment…I still have issues on my plate…but I am really beginning to FEEL like ME again. My evergy is Fantastic and alot of the effects are starting to settle down.
You are always in my thoughts and prayers…And SOON all of us Tonsil people will be EATING and ENJOYING every bite of food. Tell Diane it will be soon you guys will ENJOY Dinners like old times.
Take care,
Love,
Elena
Posted on Blood counts come back and when they do its like a whole new way. Other than that sounds like things are coming along. Patty and I think on you and your family every day! Looking forward to our next get together. I will personaly make you barbacue to rival famous dave. I been hearin a high pitch sgueel for years. I call it Patty!
Love you
Harry & Patty
Hey Greg,
Glad to hear you are on the mend, but we all want to push harder, so “IT” gets well sooner. Hang in there. I know what you mean about watching the food channel & I don’t know how you can do that with the problems you are going thru. My clothes get tighter JUST watching it, without eating anything! (hehe)
Keep on, keeping on.
Sandy
Posted on February 15, 2010
Today, Monday, February 15, 2010, I am 3 weeks out of my last chemo treatment and a little more than 2 weeks out of radiation. One week ago today I had a 2-week, post-chemo, follow-up visit with my Oncologist. At this visit my blood was drawn and tested. My blood counts are still low, which accounts for the fatigue, weakness, and insomnia I’ve been feeling, but not so low as to require any treatment other than time and patience. The Oncologist said this is a result of my body regenerating itself from the chemo therapy. My next follow-up appointment is a week from today.
No longer feeling nauseous. That’s a very good thing. Still have to gargle frequently to help prevent mucous buildup in the back of my throat. Voice is still weak. Still having my meals in the bathroom using a 2-ounce syringe to supply my stomach with two 8-ounce cans of Jevity formula (355 calories per can) and 6-ounces of water per feeding, one syringe-full at a time. This happens three times a day. Also use the syringe to feed myself 6-oz of water between meals. I tried eating Cheerios with milk. That’s what blogger Gina said Jim was eating soon after treatment. Didn’t work so well for me. Got it down, but it didn’t have a taste and felt weird in my mouth.
I’ve been watching a lot of food programs on the Food Network and Travel Channel; programs like America’s Best Places to Pig Out, Anthony Bordain’s No Reservations and Man Vs. Food. Made notes about all of the places I want to visit when my taste and eating ability return. Gives me something to look forward to :o)
One of the adverse side effects of the low blood counts and overall chemo and radiation treatments, besides fatigue, weakness and insomnia, has been recent episodes of some unclear thinking and depression. What I have found is that, when I start feeling depressed and a little sorry for myself, it helps to feed my mind with some positive and potent messages. I’ve been reading Scripture verses from my Bible and words of wisdom regarding trials, trust, faith and growth from a book that my friend Jodi loaned me: David Jeremiah’s book, Quotable Truths to Live By. It also helps when I think about the goodness in my life – my family and friends who have been so supportive and encouraging (and no more nausea). It is true for me that when I spend time in God’s Word and in prayer, thanking God for His mercy, grace, presence and goodness in my life, and praying for the many others who are in so much need of prayer, my focus changes and my thoughts turn away from my depression.
It also helps when we are reminded to put our lives and circumstances in proper perspective. Our blogger friend Martha helped me do this with her recent post about a 17-year old young man in her neighborhood named Trey who is battling stage 4 melanoma. Trey’s latest scans showed tumors in both lungs. He has also lost some of his vision and a tumor was discovered in his brain. He had brain surgery on February 12. In case you don’t read our friend Martha’s blogs, she has requested we all offer prayers for Trey.
I will close this post with a couple of Scripture verses that help to remind me where to direct my thoughts and focus:
Philippians 4:8 (New International Version)
Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.
Isaiah 26:3 (New International Version)
You will keep in perfect peace
him whose mind is steadfast,
because he trusts in you.
Change Focus to Help Manage Depression, 10 comments)
Greg,
So glad you’re turning to His word to help you through your stuggles. You’re an amazingly strong man and I admire how you’ve handled this situation. One of my favorite scriptures is Phil 4:13 “I can do all things through Christ Jesus who strengthens me.” I have it printed on my checks and it’s the banner on my cell phone. Always know that He has your back.
A little news from me. My youngest nephew, Matt, and his wife, Brandi, had their second child, a son name Rylan, on January 14, 2010 at 28.5 weeks. He was 3 lbs 1 oz and 17” long. Terribly scary time, but he was one month old yesterday, he’s 4 lbs 11 oz now, breathing room air, maintaining his body temperature and drinking breast milk from a bottle. We’re hopeful he’ll be home to meet his big sister, Laney, 20 months, soon. The doctors are saying about another three weeks.
So, for whatever reason, God sends us trials in our lives and then heaps on the blessings. Your blessings are coming on that road trip to all the restaurants you’re accumulating. ;~) Good to hear from you and I’m glad to know that you continue to move forward, even on the bad days. (And don’t let anyone tell you that you aren’t allowed bad days to feel sorry for yourself. We all need those once in a while, we just can’t linger there!)
Blessings,
Cindy Lynn
Greg—
It is so good to hear from you—thank you so much for updating us. Although I can’t relate to a lot of the things you are experiencing, such as the PEG tube, swallowing difficulty, and all those things that go with treatment for tonsil cancer, I can relate to the fatigue, nausea and depression. Those side effects can certainly take their toll on us. I hope you will continue to have strong faith and remember that these things will soon be a distant memory.
Thank you so much for mentioning Trey, my neighbor. That is so kind of you and I appreciate the reminder to everyone to keep him in their prayers. He is a strong young man, but is being tested to his limits right now. Thank you and everyone else for their concern and especially the prayers.
I will certainly be thinking of you as you continue towards complete recovery. Yes, it will come and it will be complete, I just know it! Just take one day at a time. You remain in my prayers. Take care.
Hugs—
Martha
Greg,
Good to hear from you, only wish things were better for you. Hey, I’m right there with you as I live vicarously through the Travel Channel.
I have no doubt with your Sense of Bravery, Your Wonderful Sense of Faith you as well as everyone can soon be on that Wonderful Road to Recovery.
Thanks for sending the scriptures. It puts it all into perspective. God Bless, Patty
God Bless,
Posted on You sound well an upbeat, and who would enjoy a ful liquid diet. I know exactly how you feel, that part where if you can get past your tongue it most likely will be okay. Have they offered steroids for your fatigue or are you even interested in that approach. I know when I was so fatigued, I couldn’t have even moved without one. But the side effects suck, and you will want to end them ASAP. It sounds like your dealing with it the very best way you can. I am proud to know you and you are in my prayers daily.
Peace! Sharron
Greg
It is great to hear from you. You are a great inspiration to me and others who are following after you in this awful journey! Your strength and faith in God will pull you through, thank you for those scriptures that you have posted.
I won’t be on hear for awhile as I have my surgery on Thursday this week. My doctors are being very thorough with me which is helping to keep me positive. I am having very simalar surgery to what Ron had many years ago,and am nervous, but I also have faith in God and my Doctors, and I know I will come through it.
I am hoping and praying that your recovery is speedy, and that your depression ends fast!
Hugs Val
Posted on Hi Greg,
I know how rough it is for you right now and I can guarantee it is going to be a few months before things are definitely better. You just have to hang on. You will start thinking this is never going to end BUT IT WILL! I’m praying for you and sending you good energy.
Hugs
Anna
Hi friend,
Prayers continue to come your way! Thrilled to hear you are taking control of your feelings and not letting them rule you! With God in your court how could you not win on that one?
I love the travel/food network shows and have watched them for similar reasons as you. Without a colon there were few foods I could eat and only a few bites at best…better than you but I get what your saying.
The chemicals still rushing around in your body are still a great contributer to your depression and “chemo” brain…I promise this will pass. I am so happy to hear that you realized how much it helps to look beyond your world and not allow those feelings to consume you. God’s word has been a tremendous resource to me as well as looking to find reasons to help others and I know you will continue to find relief there as well.
Stay strong, stay true and know oontinued healing!
Blessings to you,
Larissa
Posted on greg, think of you often as we are pretty close
to treatments.. i also cant sleep at night and
toss and turn and read late into the night i thought maybe that was from going of the pain patch and the pain medicines?? i am so glad that they put me on lexapro to help me moods as a month out i too get sad that this is not getting any better.. but at least the mucas is not as bad
but still there.. prayers and peace to you.. please keep in touch..
diane w from wisconsin
Hi Greg!
Oh my gosh… I watched a lot of Food Network during my radiation and still do. I’m pretty picky about what I eat and have never liked seafood, but I will still watch the shows and I guess live vicariously.
I have my prescription for medicinal marijuana and that has helped me get an appetite a couple times a day. It also helps me eat a little more than I normally would. Certain foods are still hard for me to swallow, so I just stay away from them. Breads and cakes are the hardest to eat.
I hope you continue to kick the cancer in the ass!
Many hugs and blessings,
Elana Rose
Posted on Hi Greg,
I just wanted to tell you how much I enjoy reading your posts. You are so detailed and organized. You are an inspiration. My prayers and thoughts are with you always. And Cheers to you as you are on the road to recovery.
Love,
Elena Cuomo :)
10.20.09 
Thanks for your support - 
