We just got home from what was supposed to be a vacation, touring New Mexico and Colorado in our Challenger. It was more torturous than if I had pulled my toenails off - I'm supposed to be happy and gleeful in trying to make memories. It started off great, enjoying the drive, scenery, talking and just enjoying each other; First night went great, 2nd day breathing problems set in. I did bring the breathing machine, thank God! As we drove thru Colorado, our cell phones didn't have much signal; spent most of the day pulling over and leaving cryptic voice messages for the Dr. Breathing continued to worsten - Jim got very nasty with me and told me to get the Dr. on the phone and send him to a pulmonary Dr. as she obviously wasn't taking care of the problem. After missed calls, finding Walgreens pharmacies from town to town to get more prednisone, antibiotics we finally reached a place where my call was answered. Only to hear from his nurse telling me how insane I was to take someone with his breathing problems to Colorado where the altitude was so high - that I had to get him home immediately. I told him about the conversation and he told me that he may die from cancer, but that he is in charge and will do whatever he wants - that he will not let cancer control him. I feel like a hamburger and I'm the meat - getting chewed on from all sides! I tried to get him to hold off on this trip that we could do it later, but NO, we had to do it now...I have spent 5 days driving 2,200 miles trying to have fun, but my memory is so tainted with his stubborness; turning into sadness and guilt - I am worn to a frazzle - called his mom Wednesday nite as I really thought we were headed for the hospital and that they may need to fly up there; Jim just kept sleeping and coughing and then telling me he was fine and that he just needed to rest. He wouldn't hear of stopping by a hospital (thank goodness for GPS systems, because I located every single one when we got to a hotel) he started coughing up blood Thursday nite into today - altitude or cancer? Who knows - I just know that I'm in way over my head and there seems to be no good ending to this. My eyes look like feedbags from crying so much and listening to his breathing.
Then having to pull myself together long enough to listen to him tell me about how he is feeling and give me the plan for what we were going to do each day.

I'm sure it's the altitude that is causing the bleeding and the increased problems with his breathing, but in the end, we made it home, the blood isn't bright red tonite anymore (hopefully it's clotting) and he just called for me "not stay in here too long, typing". Thanks for listening to me. Colorado and New Mexico are gorgeous, but if you plan on going make sure that you can handle altitude.

Paula

Hi. Just wanted to let u know that when I went to Colorado acouple of years ago I was at the age of 23. I got bad nose bleeds also. They say it is from both the altitude and the dry air. I also got it in Arizona at the grand canyon. I hope you both enjoyed Colorado. It is beautiful and a place I believe everyone should see.
I know how you feel with the trying so hard to get beat down somedays. It happened to me today also. Just know that you are not alone. You have many praying for you and your husband. May you get a good nights sleep and a new wonderful day tomorrow awaits you.

Paula - you really are being such an awesome caregiver and I hope you have been able to get that good night's sleep that Susan mentioned. I'm hoping and praying for some smooth days ahead for you and your husband and that there is someone close by that can you a big well deserved hug.

Paula, I am so sorry your trip went badly. You are a great caregiver trying to do what your husband wants and also at the same time taking care of him. Im sure you were very scared with Jim getting so sick and bleeding. I never knew altitude would bring with it so many problems. Im glad you posted this so others are aware too. Now that you are back home things will get back to normal. Your OCF family is always here to lend an ear and a shoulder to dry on, wish it was in person but this is as best as we can offer. You are doing a terrific job and dont ever second guess yourself or let an outsider (the nurse) judge the job you are doing

I so agree with Christine. It is easy for the nurse to chew you out and I even understand her point BUT you need to balance your husband's desire for some normalcy with the medical profession's opinions. And that is a job in itself. Sounds like you are doing an amazing job. Really.
I know it feels impossible but please remember to take some time for yourself to calm your thoughts. I think it's something we all need to try to do as caregivers.

Paula, I'm so sorry the trip didn't turn out the way you (both) wanted it to. I'm sure your husband's anger towards you came out of frustration and FEAR. Listening to some A**hole nurse who isn't walking in your shoes certainly didn't help. Take a deep breath and hopefully things will calm down now that you are here. Hang in there! Hugs, Wanda

PS - take care of you!

Thanks everyone; I'm having a very hard time, partially I'm exhausted, but mostly scared. I dread having to leave him and go back to work tomorrow, but as he tells me all the time "you go do your job and I'll do cancer until you get home, then we'll both do cancer". Looks like we'll be taking another trip in a few weeks - this time to New Orleans for an airboat ride. I'm hoping this trip will be better. Jim seems to be doing a little better, but continues to cough up blood. I wonder if this is going to be the new normal...coughing and such; I'll touch base with his Dr. in the morning and see what she says....thanks to my OCF family for letting me pour my heart out to y'all. You're the only ones that I have to talk to about this.

Hugs,
Paula