Ugh Radiation Burns

Okay I'm not a happy camper this morning. I knew I would get some radiation burns on my thumbs, BUT, my goodness my thumbs are so sore and swollen. I can't bend them at all and grasping anything with my thumbs is impossible at this time.

I can say that the pain in the thumbs is sitting at a solid 7 out 10 and describing how they feel it hard to do. It's like as each day passes they get worse instead of better. I'm guessing that the radiation continues to work after you've stopped the treatments. I know I was given 30 gry of radiation over 10 days this time.

I know today will be long and I'm already tired, hurting like heck and not wanting to even be up. Saturday night I went out to get take out sushi and got into the car and my low tire light went on. Thought I'd stop and put air in, once I backed out of the spot, I realized that I wasn't going anywhere. Had to call Triple AAA and they were pretty fast I have to say. We've had Triple AAA for 10 years and Saturday was the first we've EVER had to call them for help.

Of course, my luck is never good, and it's not a nail in the tire, but a hole in the side wall of the tire. So in 45 minutes I'll head to the tire shop and purchase 4 new tires they certainly are expensive and I really didn't need this first thing this morning.

I'm suppose to be at my oncologist office at 9 instead I'll be at the tire place at 8:30. Then off I go to oncologist for my labs and a port flush. Then I meet with my pulmonary Dr to get the results of my PET/CT scan.

As for me physically, I'm doing really poorly and I'm not sure what's happening with me, but I think my inflammation is thru the roof and every single joint in my body aches. I'm so ready to give up I know you all understand this feeling. Please send some much needed energy today. I'll be lucky if I can drag myself out to the car.

Hope everyone has a good day and low pain levels.

Hugs,
Barbara

Aloe will be better for your thumbs. I would get pure aloe gel and just soak my thumbs in it.

((((((((((Gentle hugs))))))))))

Sorry you're having such a bad day. Healing vibes flooding your way.

Hey Lynn, Joy, and Laura:

Thanks for the hugs, well wishes, and advice on the aloe. Well, I managed to get home at 6pm this evening, it's been a very, very long day for me. By the time I got my tires bought and mounted I was pretty late for my appointment. I didn't leave the medical center until after 1:50 pm today.

I then needed to complete errands that needed to be done. Lastly, Bill wanted to meet somewhere for dinner as he didn't do any cooking over the weekend. He and I had intended to make cabbage rolls but got sidetracked and it didn't happen. Everything, that we do have to cook is in the freezer and needs to be taken out. So, we went out to dinner which was a total bomb.

I've been craving Fish and Chips, so we went to a place that was recommended. Order that and sat down to eat our dinner. They used Whiting Fish and floured it, instead of beer battered fish. The tarter sauce was so sweet I couldn't eat it at all. All I had for dinner was an order of very well cooked french fries and a large lemonade. I did has some Sushi, California Roll, for lunch. Now I'm eating a bedtime snack of a pear. I know not much food today, I just don't feel well and food isn't appealing.

As for my appointment with my Pulmonary Dr, I'm not sure what to make of it. She said that the nodule in my upper right lung is 7mm in size and they aren't certain about it. Because of all that's going on with me she wants to repeat the PET/CT again in January, before requesting a biopsy of the nodule. Also, I had an area light up in my bowels. So, they will look at that area again too at that time. She said it may just be inflammation in my bowel, but if it's lighting up again, I'll most likely need a colonoscopy for them to take a look at things.

I don't have to much colon left as they removed just over 3/4 of it back in 2005. The area that showed the uptake of the radioactive sugar dye was at the very top of whats left of my colon and into my small bowel. I'm sure hoping that it's gone in January, I really don't want to go thru a colonoscopy, I've had way to many prior to my surgery in 2005.

My thumbs are so sore and painful, I can not bend them at all, the swelling is really bad too. I completed all my lab work for the test to see if I'm going on Foreto for my bones or not. I now need to do a 24 hour urine, once I've completed that, my endocrinologist will let me know if I'll be starting Foreto. If he decides to put me on this drug, I'll have to give myself a shot EVERYDAY FOR 2 YEARS. Sigh, seems like my life is never easy.

My left foot, the one I ruptured my tendon on, is acting up again. I can barely stand on it by 5 in the afternoon, if I've been up on the darn thing all day. The pain is along the very back of my heel up into the Achilles tendon area. I can't begin to describe how painful that area is. I know Matt, my physical therapist, said that it's full of knots and inflammation. My lower back is in the same shape and honestly, my pain is up thru the roof. I have my long acting pain meds that I take 3 times a day. I also, have short acting stuff for break thru pain, but I really try to limit home much of that I take.

By doing that though, I'm in never ending severe pain. I just am so sick and tired of all of this stuff. I told Bill tonight that IF I need a colonoscopy and broncoscopy and they plan on doing it awake, there's NO WAY I'll let them do that to me. I'd rather let cancer eat me alive than go thru either of those awake.

My quality of life is dwindling rapidly and this is really NO way to live ones life. My breathing has worsened and every joint in my body hurts 24/7. Plus my chest pain is bad from the pericarditis and of course all of my fractured ribs that I have. My PET/CT scan results shows that I have a total of 8 fractured ribs and two of my ribs have fractures in two places. My Dr told me to tell folks not to bear hug me, if they're gonna hug me it better be gently. She said with this many fractured ribs it's going to take a long time for the chest pain to get better. She's also thinking that the ribs may be contributing to my Oxygen levels being low. I was at 85% with 2 liters of oxygen on this afternoon.

Well, I'm off to bed now, I feel like I can sleep forever. I wish I could, but I have a 9am Dr's appointment, then I'll have PT later in the afternoon. I hope you all had a good day and that you're feeling okay. May you all have a wonderful night sleeping and no pain. Will update tomorrow when I can, again thanks for being there for me. I really don't have anyone but you all here at HW>

Hugs,
Barbara

I was able to chat with Barbara a few minutes this afternoon.

Barbara is still totally exhausted from the radiation on her hands and when not at a Drs appt of some type she is resting and trying to recover. Not only is her body trying to heal her thumbs, but some of the ankle tendonitis issues have become chronic and it's difficult for her to put weight on her feet or ankles.

Please don't take it personally if she can't make calls, return calls, send emails or respond to emails right now. Barbara just doesn't have much energy and is trying to conserve the small bit she has for the necessities - like appts and trying to eat. (Even eating is difficult - mouth sores from the MTX are a constant bother.)

Please send her energy and prayers -- she'll get back to us when she can.
Hugs for Barb!

Hey Barb,

So very sorry and sad to read your latest update. Almost too much to bear reading, let alone being the one enduring all you are enduring.

I never found much relief from the radiation burns from my first major radiation bout in 2000. I was badly burned from just above the center of my chest to about even with my ears, and including my ears. My wife had me try just about every kind of cream on the market, medicated or not. The only thing that vaguely helped, was an old wives' tale from FL, where you apply white vinegar to sunburn. It makes some kind of chemical reaction with the burned areas, and can offer some local relief. It will make you reek of vinegar though. Only thing I can think of.

We seem to keep copying each other. This past week, I went to my tire man to rotate the tires on my Lincoln. They couldn't do it. Seems the back two tires were worn badly on the inside edges, due to an alignment problem I didn't know I had. And one of the front tires had a deep slash on the sidewall, swear it looked like a knife cut.

So, I had to pay over 1,200 bucks for 4 new tires and getting them mounted. My car uses 20" tires, which are very expensive.

Then 2 nights ago, we woke up to a cold house. Our 15 year old heating/ac unit gave up the ghost. I knew when I bought this house 8 years ago, it would one day it would need to be replaced. So I spent all day sitting around the house while the heating/air men came and put in a new unit. That was 3,500 bucks real fast.

Good thing we had this extra money from the VA, or else we would have been in a bad financial way. Always something to take your money away, anytime you think you are getting ahead.

Let me know when it would be a good time to try to call you on the phone, I still have your number in a safe place.

If you get a chance, my latest oncologist visit update is on HW PC.

Good luck, my friend, and a gentle hug to you. Please never give up.

David

Thinking of you Barb, sending you gentle hugs!

Thanks Lynnwood for letting everyone know that I've not been doing to well. Joy, David, UA, Melissa and Lexi thanks for your replies and support. It's been a very difficult week for me.

Lexi I've sent you like 3 emails over the past couple of days. So please make sure you email me, so I know where to send you an email. Maybe I'll feel up to calling on Monday or Tuesday. Is your honey around on those days?

David I read your post and responded on the CP forum. I'm very worried about your falling all the time. I'm scared you're going to break your hip. Please be very, very careful I know you're trying to get your walker. Keep in mind always that you may fall. I know that things are going down hill rapidly, you're in my prayers.

UA, haven't seen a lot about how you're doing, I hope that you're feeling alright and doing well. The same is with you Melissa I truly hope that you're feeling better and doing well.

Joy how are things with you? I know that you've been struggling big time with things. I really hope that things start to improve for you.

Lynnwood, I want you to know that I'm ALWAYS here for you, no matter what. You're a very dear friend to me and we've been friends a long time now. My home is always open to you, so if you need a few days away you're always welcome to come and visit, that's a proper invitation by the way

I promise I wouldn't put you to work either, you wouldn't have to clean anything or cook anything.

As for me, I'm wiped out and feel terrible. The warts on my thumbs are getting better BUT the radiation burns are still pretty bad. I can not use my thumbs at all. Had to have Bill peel my oranges this morning because I can't even bend my thumb at the knuckle. They are very swollen, red as can be, and very hot to the touch. I have to soak them in cool water upon waking in the morning they hurt so badly.

My PCP called me and increased the amount of dilaudid I can take for the pain. She basically tripled the dosage for me. Just until the pain and swelling improves. My back is in terrible shape and she's requested that my PT write her a not suggesting she prescribe a TENS unit for my back.

My left foot is in such bad shape, I can barely walk the 12 feet into our bathroom in our bedroom. I tried all day yesterday to reach the Orthopedic office to make an appointment, never got thru. If I can't be seen by Tuesday, guess I'll make a trip into the ER over my foot.

Today, I'm laying low and staying off my foot, resting as much as I can, and I'm going to go back to sleep for now. May be back later on tonight, just wanted to thank you all for you support and love. Without you all I'd feel totally alone in my journey right now. Things aren't the best with my family and I'm feeling very lonely and unwanted at this time.

Okay, I'm off to my NEST (bed) and I'm going to sleep for a bit. I feel NO PAIN, while I sleep so I'm spending a lot of my time doing that. Will check in again later maybe, tomorrow at the latest. I hope you all are having a good weekend with very low pain levels. Thanks for caring about me, I certainly care a lot about each one of you.

Hugs,
Barbara

Hey Joy:

Sorry about the usual grunts and groans and yes I understand them big time. I hope that they aren't to bad and that you're getting better every day.

As for me, I'm up trying to get the pain from my thumbs to lessen. I've tired everything tonight and I've maxed out on my prescribed pain medication for the night. Need to wait until 6 am before my new day starts for my pain medications to begin. It's very cold here tonight, it was even snowing about 4 hours ago. The weather wasn't calling for snow, but you know how that goes.

My joints are hurting big time and my hands just hurt me so bad, O M G I swear if these warts grow back after all I've gone thru, I'm not sure I won't end up in the mental ward. Radiation dermatitis isn't anything to joke about, I now understand why they also call it radiation burns.

To answer your question about a wheelchair, yes I have a regular wheelchair. We've discussed getting one that's electric for me. However, we might have to consider changing my car, so that it has a lift in it. I can not lift my regular wheelchair out of the back of my vehicle now. There's NO WAY I could lift the electric type out, even if I were to purchase a really small one. Bill had already said IF I want one, he's all for it, but I would need to consider some changes as far as the car goes, and possibly our living arrangements.

I normally, only go to the mall, when my daughter is home. Those days are becoming less and less too, as she's now working in the mall near her college. Bill rarely, and I mean rarely, takes me to the mall, if I ask he will. I just don't ask that often because I know he hates shopping LOL, what man doesn't? Plus, with my white count down so low now, I'm to avoid the crowds and wear a mask when out in public. People stare when I'm out in public so I try not to go out to much. It's not that I'm ashamed of my mask, but folks respond like I'm going to make them sick. Had a serious issue with valet parking last week at the medical center.

Okay guess I'm gonna try again to lay down and sleep for now. My left thumb isn't burning as bad as earlier. Hope you are all sleeping well and having great dreams. May you all have a good day today and zero pain to you all.

Hugs,
Barbara

Hey Barbs,

I'm okay, haven't been doing too good since my father passed away recently but I'm hanging in there.

I'm sorry your pain level is soo high. Glad you've decided to stay off your feet and get lots of rest. I hope the warts don't come back. I don't want you to go through that process again. It sounds really painful.

Hope you'll get some pain relief soon. Thinking of you...

UA

Thank you, Barb, you are such a dear to always remember me despite your own long list of woes. Had a rough weekend pain wise, a severe bout was triggered by PT on Friday. There has not been a second all weekend that my legs and feet weren't burning in pain. Almost can't take it any more, but like the advice I continue to give you, I refuse to give up, and I refuse to lose hope.

Really hoping my upcoming MRI's of my inner hips may give a clue to the new oncologist on my medical team. She's working on her own out of the box lead. One thing that was discussed in passing, was if MS was in the picture. A scary thought with all I have going on. I was tested of it years ago (10-15?) but they drew inconclusive results. I have an ever growing list of odd and quirky neurological things that could be pointing toward that.

I hope you are at least doing ok this weekend, I still want to talk to you. Perhaps if you give me a new time frame when it would be convenient, I will make a point of making it happen this time. Still have your phone number handy.

My best to you, my dear pain buddy

David