This is what Doug’s neck looks like after having 10 days to heal. He has severe burns and they have all blistered up and are now drying out. This is what the outside looks like, can you imagine what the inside looks like? The next time you hear someone say that radiation is not so bad, think again. The burns associated with the radiation can be very painful, and you can only see what is outside, not inside. I like sildenafil from india
We have had a very difficult 10 days, he has a really hard time keeping anything down, whether he takes food by mouth or through his stomach tube. Most everything comes back up, violently. He is down to 173# now. The docs think things will turn around slowly after the 2 week mark, so I am hopeful. We have laid off the tube food and he is drinking Sprite and occasionally able to keep a Fudge pop down.
He started Ensure today instead of the usual “tube food” and so far. . . so good! 🙂
Today was the first day Doug woke up without his mouth sealed shut by the mouth sore crusty stuff. This is good news because it means the sores on his lips are getting better. It has been 5 days since his last radiation and hopefully he is starting to turn the corner. His spirits are coming up (thank you for all of your prayers), he is back to getting about 6 cans of food down for the second day in a row. No vomiting spells to speak of, I started giving him some Robitussin to try and thin out the funk in his throat to see if that would help keep him from gagging on it. It seems to have helped. His brother came by last night and he spent the evening talking basketball with Doug and that was the best medicine for him. (I don’t speak that language! 🙂 ) Yesterday, Trevor and Reece also came over to hang out with Dougie in his “crib” to try and cheer him up. I got the above picture of the event! 🙂 I am not sure if they were entertained more by hanging with Uncle Dougie or if it was the fan circling above. Either way, he did have some fun with his visitors yesterday!!
Doug’s mouth sores
Doug has been having a horrible couple of days. He has had multiple vomiting attacks which cause unbearable pain. He has a tremendous amount of thick funk that is in the back of his throat and when he tries to expel it, he gets uncontrolled gagging that leads to the vomiting. Today he was in such pain that I ended up giving him some medication to help him sleep it off. The pain was so bad that he told me he did not think he could make it through the day. He is so strong, but the pain is so severe when he vomits that it is threatening to break him. Please pray for him to gain that inner strength to get through this bump. I know time will heal him and better days are ahead, he just cannot see that right now.
He is being hydrated today with his second IV bag, he only had two cans of food today, which he lost getting sick. So I have focused on hydrating him and helping him sleep off the pain and hope for a better day tomorrow. The burns on his neck from the radiation are quite severe, but with the cream we have been given, I hope this will help. Radiation causes severe burns and the skin it is very hot to touch, like a horrible sunburn that bubbles up and crusts over.
Here is Moose’s Website with the pictures from Doug’s last treatment.
I only have 2 radiations left and I hated to wait until Monday to do the last one, so I negotiated with the doctor today and he worked it where I could finish on Saturday. They don’t normally do Saturday radiation except for emergencies, but they agreed to squeeze me in. I’m so excited and it will give me a 2 day head start on the long recovery process that I’ll be going through.
Right now the expectations are that the mouth sores will begin to deminish within 2 weeks and at that point I may be able to start eating some soft foods here and there. Then over the next 2 weeks my eating will improve and I’ll start to get some of my tastes back. That’s what I’m really looking forward to, eating and being able to taste it.
Like Laurie I also wanted to take some time and thank everyone for all that you have done for us during this difficult time. We definitely wouldn’t have made it without all the help. I’m still amazed by the out pouring of help and prayers and we appreciate every bit of it. God willing in the next month or so we will start to get things back to normal and I can carry my weight around the house as well as at work.
We do intend to host some sort of “cancer free” party at some point and invite everyone we know. When we have more information about when that will happen we’ll post it here and send out invites as well.
We are getting closer and closer to the end. When you start a journey like this you think 7 weeks, that’s nothing. . . you know, I can do anything for 7 weeks! There is a start date and an end date, it’s like Crossfit, 3-2-1-go. . . But when you are in the thick of it, with all the pain, suffering, vomiting, extreme weight loss, dehyrdation, etc, you look and see that 7 weeks is a really LONG time. And it has taken us a very long time to get here where we are now. With 7 days of radiation left, the end is so close, and the road behind us so long that I wonder how we got this far. I know that if it was not for my friends in my small group, our friends from CrossFit, our long time friends and our family we would have never made it this far, in this good of shape. The dinners, the converasations, the prayers, the cards and the emails, help with picking up Zoe, taking care of our dog and cat in a pinch, every little thing has helped us more than you could ever know. I just wanted to thank each of you for your part in helping me get Doug through these last 28 radiations, 8 chemotherapies, and a short stint in the ICU.
He is doing well these days. He learned not to put lip balm on before radiation, which has made his mouth sores almost nonexistant. His face is clearing up now, I never posted a picture of him when it was at its worst because it was really bad and I know if it was me I would not have even left the house. His throat is quite sore, he still has issues swallowing, and all food and drink taste terrible, so he eats through his peg tube. He is up to 7 cans a day and his weight is now up to 184 pounds which is wonderful. He did manage to eat some scrambled eggs and an ice cream sandwich last night which was exciting for me! He gets dehyrdated easily, so I give him a liter of fluids through an IV every day. They say it can take several weeks to get your taste back once you finish treatment, and I can say I cannot wait to have dinner with him again. Eating is such a social thing, and when your partner cannot eat, it makes dinner time very lonely. My birthday is coming up in April, so my birthday wish is that my husband not just goes out to dinner with me but also eats dinner with me! 🙂
Last Tuesday Doug was rushed to the hospital in respiratory distress. This is a picture of him on the ventilator. He had no less than 5 IVs going in him at any one time. Today, he was strong enough to restart radiation. He has lost quite a bit of weight, he weighed in today at 175 pounds which is almost 10 pounds down from the last time he had chemo (about 10 days ago). He is trying to up the amount of “tube food” he takes in daily to 6-7 cans, we currently get an average of 4 cans (although yesterday he did get 5 cans in). The goal is 7 cans, but it is hard to squeeze that many cans in one day, so today’s goal is 6 cans.
He will restart chemo later this week. We have 15 days of radiation and 3 chemo sessions left until he is done with treatment. It seems like so little, but when you are going through it, it is still quite a bit. We did learn that lip balm can amplify the effects of radiation, he had been wearing lip balm when getting his treatments and this may have led to the horrible lip sores he suffered from. He wants to start back on the Duragesic patches (pain control), but I am hesitant to do this since we still don’t know for sure what exactly happened to cause the problem last week. They are unsure if it was the Duragesic (fentynl)patches alone, or combined with dehydration and vomiting that caused the problem. The doctor said we can start back at 50mcg tomorrow morning, so I guess I will bend because I don’t want him to be in pain, but only with super, duper, extra- close supervision. . . I cannot do a repeat of last week.
As many of you know we have had a bit of a set back. On Monday night Doug went to the dentist who is in Covington (where his parents live). He ended up staying there for the evening because he has been feeling tired, weak and had been vomiting. The doctor earlier on Monday told him the vomiting was probably due to the high volume of dead tissue at the back of his throat that he has been swallowing. Doug’s pain was steadily getting worse as well, so he increased the dose of the fentynl patch from 75mcg to 100mcg.
Doug ate some pudding and two glasses of chocolate milk at his parents house that night, switched out the patch from 75 to 100 (the patches get changed every 3 days and his expired on Monday night). He went to bed as usual and planned on getting up at 6am to get ready for radiation at 7am. His mom got up shortly after 6 and noticed the lights were not on in his room, so she went to wake him up. She was not able to rouse him, and ran to get his dad. Neither of them could wake him, he was unconscious, had white fluid running out of his mouth and was having trouble breathing. (I am told he sounded like he was gargling) 911 was called and he was admitted to Newton Medical Center. The intubated him (put him on a respirator) and gave him Narcan to wake him up from the Duragesic (fentynl) patch. He apparently woke up and then had a violent projectile vomit episode which required them to take the tube out and clean out his throat, re intubate him and knock him out. They suctioned out everything in the stomach. He was kept unconscious for the rest of the night and into the next day. I stayed with him in the ICU on Tuesday night, he would respond to my voice with head nods and hand squeezes occasionally. The next morning, he had a chest x-ray which came back clean and all his labs look good (his white blood cell count is high, which does indicate infection, but they had him on prophylactic antibiotics), so they took him off the respirator around 12:30. He was confused about what happened and did not remember the previous day, but the medicine they gave him to knock him out was designed to give him amnesia since it is not a pleasant memory to have. It appears he feel into a deep sleep on Monday night, vomited in his sleep and then aspirated the vomit. This in turn caused respiratory distress which landed him in the ICU.
Yesterday evening, the doctor came in and told him he could go to a regular room and go home in the morning, or go home now. Of course he wanted to go home now, which was not really what I would have wanted, but Doug can be a bit stubborn! 🙂 When we got in the truck to leave the hospital, we moved 5 feet in the parking lot and Doug had a good vomiting spell. Most of what comes out is phlem like stuff, which is good since you want to get that out of the lungs so it does not fester and become an infection, but concerning as well. The deal I had to make with him was if he vomited like he was doing before he went into the hospital, I was taking him right back to the hospital and he was not allowed to argue with me. I did get him home last night and Dean helped me get him into the house. We got him showered, got his mouth cleaned up, flushed his stomach tube and lubed up his face and lips and put him to bed. He did have a few more episodes of phlem junk coming out this morning and he lost all the liquid Percocet (pain med) I gave him orally. So I gave him some more Percocet in the tube and have him resting right now. In a short bit, his mom and I will cart him up to his doctors to figure out what to do now.
I want to post that of all the hospitals he could have gone to I am so glad he ended up at Newton medical center, the team there was outstanding! That is coming from a highly critical nurse who demands nothing but the best treatment for her husband! 🙂 Thank you for all your prayers, we both really appreciate everyone!
Today we are slightly over half way through the treatment. Doug woke up today not feeling very well, his mouth is unbelievable. The sores he has on his lips now appear to have sores on top of them. They bleed and crust over and make nasty gunk that oozes (those are all technical nursing terms, by the way!) He keeps rinsing his mouth out with baking soda and salt water which help some, but only to get the crusty stuff off and only temporarily. Over the last 24 hours, he has eaten and kept down one piece of Texas toast and one can of food that went down his stomach tube. He has thrown up everything else he has eaten. We are not sure why, it may be due to the increase in the dose of the Duragesic (fentenyl) patch which is for pain. Today, I got him to get down about 4 ounces of canned food in the tube, and he is sleeping on the chair next to me. I will try again to get the rest of the can down when he wakes up. My job today is to be the food police and my duty is to try to get some calories down that skinny man and to keep them in him.
Cancer is such a horrible thing to deal with, whether you are the patient or the loved one. While I am sure that dealing with the sore throat, mouth sores, vomiting, fatigue and face rash are miserable, it is so hard as the spouse to see your husband like this http://pharmacieinde.fr/viagra-pour-femme. I look at a picture of the two of us every morning on our dresser, it is from our last cruise, we are dressed up and beaming. Lots of color on our faces from the sun, and our smiles bright from all the fun we had been having. Then I look over in the bed and see him now. He is so skinny, like a shell of the man in the picture. His face blochy from the rash, his mouth oozing pus from the sores on his lips. He is bald now, no hair on his face or head, just some new patches of white hair that have defied the chemo and grew out. I know this is temporary, but it is so hard to look at the man you love and see what cancer and it’s treatment have done to him. So while it is hard for the patient, as the caregiver, it is a difficult battle as well. All of us know someone who has or had cancer and while each type is different and the treatment is different for each person, I want you to know that the person standing behind the cancer survivor is a mental wreck and probably needs a hug too. 🙂
With 3 weeks completed the rash got pretty bad, but with some extra medications it is more or less under control at this point. It doesn’t look very good, but at the same time it doesn’t appear to be getting any worse either. If this stays the case then it shouldn’t be too bad to deal with it for another 4 weeks of radiation, plus however long it takes to heal after the treatment ends.
The throat pain also hasn’t gotten intolerable yet, but it is hard to notice the throat pain with the mouth soars that are now consuming my attention. It is difficult to talk and even more difficult to eat. Right now I’m still managing to eat a couple meals a day, but they are small and only have foods I don’t have to chew. The feeding tube is getting some use now with about 2 cans a day. I haven’t checked my weight lately, but I’m sure it is declining. Hopefully it is declining very slowly. I get weighed tomorrow in the doctor’s offices, so I’ll know more then.
My mother has volunteered to endure the boredom that is a whole day of radiation/chemo tomorrow. She’ll get to see what fun it is to sit around and wait for drugs to be pumped into your body. I hope she brings some good reading materials because I’ll be trying to get some work done. Thanks Mom!
Just when it seems like this whole radiation/chemo thing may not be too horrible it takes a turn for the worse at the end of week 2. The rash came in full force over the weekend and in just the last 24 hours my throat has gone from no pain to about a 4 on the 1-10 pain scale. I haven’t taken any of the pain medicine yet, but I forsee that happening later today.
The rash is showing up all over my body, but the worst of it is on my face. My nose has swollen up and feels like it is going to explode any minute. The ruuny nose and the dry skin is not helping either. I am thankful that it has not began itching. . . yet.
On a more positive note I started my new time of 7am on radiation today. This was great because I was in and out in less then 20 minutes, but then had to face ATL traffic to get to work. All in all I think I’m going to like the new scheduled time though.