Dougie’s hair started to come out yesterday and it was hurting a bit so the cure for that is a shave!!
Some of his buddies and family came in to have a clean shave as well. . . We have the best friends!!
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The beard is falling out pretty fast too, I love the beard, so he is going to try to keep it a couple of more days. It is starting to be a bit patchy though. . . 🙁
Happy New Year to everyone! There isn’t much of an update other than I’m eating every chance and every thing I can to try to gain some weight back before my next cycle. I’m doing pretty well at it so far. Last I checked I was up to 183 lbs with a goal of 185 lbs at least before next Wednesday. I should be able to achieve my goal and more. Otherwise I’m feeling pretty good being active right now.
The hair update is that there is still no sign of it falling out yet. If there are any signs I’ll let everyone know, but it is hanging in there so far. It won’t be long and I’ll have to trim my beard and shave. I’m still hoping that it does fall out before my radiation/chemo phase starts in February. Not having a beard will sure help out with the expected face rash that they’ve prepared me for.
I have to give credit to Laurie for the picture post of me. It is definitely from before all this started because I was about 50lbs heavier then. I’m sure she’ll be posting more recent pictures at some point to show how skinny I’ve gotten and I’m sure there will be a skin head shot in there when/if it happens.
. . . to nuts!! Dougie has been steadily improving every day, so he decided to try some Walnuts yesterday and for whatever reason, the third nut went down and caused an immediate severe pain in his head! Before yesterday, he had not taken any percocet (pain med) in several days. So he learned. . . no nuts!!
The mass in his mouth was palpable on his neck, and now, on day 13 from the day of chemo, you cannot really feel it anymore. His tongue was lifting up on the left side when he opened his mouth, and you could see the tumor at the back of his throat two weeks ago. That is also much improved, you can only see it if you go digging way back in there with a flashlight and a tongue depressor!! The tumor is shrinking!! Whoo Hoo!!
His only issue now is some fatigue which goes along with cancer and chemotherapy, and is completely manageable! We are very thankful! I also have to give a shout out to my buddies Bill, Val, Maddie and Cody. They came over after church yesterday and helped us get our tree out of the house and they stayed to help me take down the Christmas decorations, and vacuum up the tons of pine needles left on the floor. Thank you guys for helping us out!!! Ya’ll ROCK!! 🙂
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It’s now the day after Christmas and while Christmas day wasn’t everything it could have been it was still very enjoyable. There were a few rough patches in there, mostly in the morning before anyone arived and then another in mid afternoon. Of course, nothing a quick nap wouldn’t take care of. 😉
The food was good (what I had of it) and a wonderful time was had by all. It’s a curious thing to sit in one spot on the couch and let the whole Christmas day happen around you, but that’s what it did.
Today is the real day that I feel like I’m starting to turn the corner. I woke up with a little bit of energy and managed to stuff down not only some leftover sausage balls, but also some peanut butter brownies and milk for breakfast. Hopefully today is the beginning of a trend of starting some weight gain.
I hope that everyone out there had a wonderful Chistmas Day yesterday and I look forward to posting more messages about my continued improvement.
The last two days have been really rough on Dougie. He has what is known as delayed onset nausea/vomiting from the chemotherapy. It happens occasionally and when it does, it is really hard on the patient. The typical anti-emetics that are given for chemo induced nausea do not work as well this far out from chemo. Monday he vomited several times, once immediately after I finished feeding him through his tube. He lost everything I had just fed him. Tuesday he did not manage to keep much down either. His mom was supposed to take him to the doctor yesterday so he could get routine labs done. He went to run some errands with his mom that morning and by the time he got home, he was really quite sick. I gave him a Compazine for the nausea and within seconds, he threw that up as well as most of the water he had been sipping on. The vomiting is really hard on him, as it hurts his head afterwords for a while. It is so hard to see him like that.
When you are on chemotherapy, the most important thing, second to avoiding infection, is avoiding dehydration. At the rate he was going, he was going to be admitted to the hospital for dehydration in a matter of days. We made the decision to have his mom stay home with Zoe and I took him to the doctor’s office. When we saw the doctor, I discussed having him sent home with some Saline so I could infuse him with hydration over the next couple of days until the nausea/vomiting relents. They decided to give him a liter of fluid yesterday along with a cocktail of drugs designed to allow the patient to sleep off the nausea. So we stayed in the office for a few hours while they boosted him up with fluids and we have home health care coming in today to bring us supplies so I can hydrate him at home. Our goal is to keep him out of the hospital, especially on Christmas Day. We have an arsenal of drugs at home to knock him out if he is not feeling better today, but I am hoping he will wake up today and feel much better.
Sunday was Dougie’s birthday. His family came over, and we ate a nice dinner. And when I say “we”, I am including Doug! He ate ham, mac and cheese and bread!! He had a child’s portion, but he swallowed it! It was a great day, he felt great, looked good, and got to be disconnected from the continously running pump infusing the chemo 5-Fu. He really was able to enjoy his birthday despite the cancer!
RECAP OF DOUGIE’S History: Doug has been diagnosed with base of the Tongue cancer, it is a large tumor (that has been there a long time and was misdiagnosed multiple times, not to mention the fact that it was overlooked on the CT scan done last June) and will need to be treated aggressively. He is stage IV (the worst stage) We originally went to Emory after the diagnosis and spent several weeks working on getting tests done that stage him and get him ready for chemo/radiation. 4 weeks after the diagnosis, when we still had not started treatment, I calledthe doc I used to work for (a God send) and he set us up with a team of people who are ready to cure him. The road ahead is going to be really rough, he will undergo 7 weeks of radiation daily with weekly chemo treatments after the 3 rounds of high dose chemo that he is starting today. This treatment will severely burn his throat and prevent him from swallowing, so I will be feeding him through a tube inserted into the stomach. He will lose the ability to salivate most likely this will be permanent, lose mobility of the tongue and jaw, and temporarily lose the function of his taste buds. We are hoping his teeth and jaw bone will be okay, lots of people lose their teeth and their jaw bone is damaged with radiation. The doctor said his tumor is pretty far back, so we may not have that issue.
Treatment Plan: Doug will have 2-3 doses of 3 different chemo agents (the third treatment will be given if he is strong enough, the chemo he is getting is going to be really hard on him) and then begin 3 new chemotherapy agents every week with radiation everyday for 7 weeks. These doctors are aiming for cure and feel as though Emory was not only wasting time, they were not seeking aggressive treatment. He is expected to be quite sick from the treatments and will lose his hair, but we are so thankful to begin treatment.
Dougie started chemo on Wednesday, he got chemo agents: Taxotere, Cisplatin and 5FU. (He likes the name of the last drug, he wants a shirt that says that! 🙂 ) He is hooked up to a pump that is continuously delivering the 5Fu slowly over the next few days. The pump is in a fanny pack, so he has a designer blue fanny pack he is wearing, the alterative was to to sling it over his shoulder and wear it as a purse. He decided that the fanny pack is less gay looking, so he went with that! So he is a man with lots of tubes! He has his stomach tube, which is a wonderful thing, I am able to get fluids and liquid food down it. One of the most popular reasons for hospital admission during chemo is dehydration, so we should be able to avoid this with his stomach tube. He also has a port under his skin right below the clavical on the right side. That is where he is getting his chemotherapy. When the bag is empty, I will disconnect the needle from the port and he will be able to forgo the fanny pack for the next 17 days or so.
While he was getting chemo we were talking about all the events we did while he had his undiagnosed cancer. For instance, we did Muddy Buddy while he had cancer (just imagine how much faster we could have been if he was not sick). He had a 288 Fight Gone Bad score with cancer, next year when he is cancer free, I expect a 300+ on that! 🙂
Doug is doing good today, he had a rough evening with a bout of nausea, but I dosed him up with some good stuff to help him sleep and battle the nausea. We are hoping to go to church on Saturday night, that is when the Christmas eve service will be. Hopefully, he will feel up to it, if not, we will try for Sunday morning.
I had plenty of coughing before the treatment started. It was mostly in the night while trying to sleep and typically started when I moved around trying to get comfortable. Of course, now I have almost constant hiccups that after a while begin to hurt the chest.
The good news is that I’ve reduced my pain medicine (for my head aches). I’m not sure yet if this is because of other meds that are going into me or the pain is really lessoning. Only time will tell.
I’m told that the 5FU poison is causing the hiccups, so I’m looking forward to those going away after that stops on Sunday.
It’s been a long way traveled to get here but today I finally started treatment. So far today has not been bad at all aside from sitting in this same chemo chair all day. I did get to spend the time with my wife (sharing a laptop while she plays games and I try to work).
