TJ's gut isn't feeling so great tonight so I am busy taking care of him but I wanted to do a quick shout out to Trail Transmission.
Last week when I posted about the truck being broke down we of course took it to Trail Transmission down the road. We have used them before and have always been treated fair. We took it in on Thursday, they diagnosed it, we let them know in the late afternoon to go ahead and replace it because the warranty and price was good. Friday when I got home from work the truck was in the driveway. They were nice enough to deliver it to TJ when it was done (OK, truth is they wanted to see the 32 Coupe) and obviously got it done within 24 hours. I realize this is probably not a busy time of year for them but we appreciate it none the less.
I know I talk of it often but the online cancer community has so much to offer in the way of information and support. Just this weekend I met someone on Twitter who has already given me a wealth of information and resources. If you are on Twitter it is www.twitter.com/angelacurrent and I recommend following her.
Having said that there is a down side to the online cancer community. Many of those I follow are cancer survivors, some are cancer patients and some are cancer caregivers like myself. I have been following the blog of a young girl named Michelle who was diagnosed at age 26 of lukemia. She posted this past June 29 that she had a set back and her doctor told her that day that she only had 4 to 6 weeks left. I can't imagine hearing that at 27 years of age. After her post that day there was one more a few days later and then nothing until yesterday. It was a post written by either a friend or family member but it was letting us all know that Michelle had passed early Saturday morning. To my surprise I took it kinda hard. I guess just reading about a person's daily life you begin to feel like you know them. As much as it upset me to hear the news I know that I learned a lot from her strength and positive attitude. Rest in peace Michelle. This is a link to a slideshow of a weekend she spent with family and friends in the beginning of July. http://www.youtube.com/watch?v=WwjimuiF5_s
On a happier note, TJ is still doing fantastic. Friday night we went to Dave and Dena's and hung out with them for a bit. Saturday I cleaned out the office supply closet and TJ worked on his car. Today of course we watched the race. He still needs naps but otherwise is feeling great! On Friday night when we got home we forgot to put the lotion on his back and forgot to take a hydrocodone. Well, Saturday morning when he woke up he had a headache and his back hurt. We won't be missing any more doses of anything anymore, bad mistake on my part. Had wine at Dave & Dena's and temporarily forgot about cancer. Some caregiver I am!!!! We got back on schedule on Saturday and all is good again though.
TJ has one more week before his next round of chemo. I anticipate a very good week for him this week. Our weather has cooled a bit and with the car being back home he can work on it more. When we see the Oncologist on August 3 we will find out if he intends to do two additional rounds of chemo. We are hoping not but I guess if that is what it takes we will buck up and deal with it.
Now, being a desert dweller this was an especially hard subject for me and I basically drew a blank. BUT, the following picture was taken at my wedding last month by my photographer, Kelly, http://www.justmarriedphotos.com/, and I think it fits the subject perfectly. The only bad thing is that I can't take credit for the photo. I hope you all enjoy.
Good news is that the drug schedule I came up with seems to still be working for TJ. He is feeling pretty damn good; still sleeping alot but I suppose that is to be expected. The good thing is that when he wakes up he feels great. He is especially perky in the morning...sometimes too perky if ya ask me;) At times I hate to leave for work as I think I am missing good times with him.
Bad news is that the transmission in his truck went out the other day! Financially this is not what we needed but it has to be fixed. We have some emergency money stashed but we did not plan on this for sure. Things will be easier when disability kicks in but that isn't until October. Meanwhile, since TJ is feeling so well I don't want him to be without transportation so we are getting it fixed.
My feeling is this: I can stand side by side with TJ and fight this cancer battle tooth and nail, no problem, that battle we can beat, but the damn financial burden that it puts on you is unreal and at times can bring both of us to our knees.
Enough of feeling sorry for us...I follow know_cancer on twitter and today they asked all their followers what they are thankful for. My first thought was nothing, with the truck in the shop, but I decide to post, "I am thankful that TJ is having a good day". Will they decided to Retweet that to their 13,000 followers
Wow did we get some hits on that photo after that. But the real point is that I need to continue to remember my mantra that I began the weekend that TJ was diagnosed with cancer. "Don't Sweat The Small Stuff and It Is ALL Small Stuff!"
I know some of you might find this hard to believe but I do have lots of non computer literate friends and family. Many of them have told me that they can't figure out how to leave a comment on the blog so this will be an instructional post for those of you that want to skip the rest of it.
At the end of the post you will see the word comment and it may or may not have a number in front of it if others have left comments. Simply click in that link and it will open a comment box. Click inside the box and begin typing what you want to say. Be sure to sign your name so TJ & I will know who it came from.
When you are finished typing in your comment below the box it says "Comment as" and you may just use Anonymous since you already signed your name in the comment box.
Once you have chosen anonymous then all you have to do is click on the "post comment" box and WHAMMO, you have just posted a comment for TJ & I to read!
Ok, where to begin. For those of you that don't know I will do a bit of background. However unbelievable it may sound TJ's Mom was diagnosed with cancer about 2 weeks before he was. As a matter of fact, it was him having headaches that prompted the CT Scan that found the cancer and I kept telling him it was stress about his Mom. Unfortunately I was wrong. So, long story short, they have been battling cancer at the same time. Was difficult on all of us as I felt like we should be helping her more but we had our own battle to fight and I know she felt like she should be here for her son more but she was fighting her own battle too. Regardless, they talked on the phone alot, compared chemo side effects and gave each other lots of love and support. She has finished her treatments and had a scan last week. When she saw her oncologist today he told her that she is clean and does not need to see her for 3 months!!! YIPPEE!!!!!!!!!! So now I am thinking "like mother, like son" and TJ will get the same thing when he is done with his treatments.
Also, TJ has been doing very well on the drug schedule we started last week. The only change we have made is we went from 3 hydrocodone a day to 2 a day. I don't really know what is working for him or if it is the combination of things but he feels pretty good. He wakes up feeling good and although he still naps in the afternoon he does seem to have more energy. Also, his metal mouth is not a bad this time so he is eating very well. So, once again I ask you, please cross fingers and toes that this drug schedule keeps working for him. I am glad that he feels like working on his car and I kinda like having a house husband to do chores too.
Some of my regular readers may have noticed my Friday picture post. I joined a blogger group that has a different theme for a photo every Friday and it is supposed to be from your town. There are people all over the world that participate in this so it is kinda fun to see the pictures. For those of you just looking for TJ updates can bypass the Friday post. TJ and I enjoy planning the picture for the following week.
Nothing like coming out of the gate with a new group and falling flat on your face for everyone to see. It was chemo week for TJ so my schedule was pretty hectic. Last night I snapped a couple of quick photos of this old timey jack that TJ put in the front yard a few years back. I think it has character so I didn't complain. As for the barbed wire on the barrel cactus...don't know. He was cleaning the garage one day, put it there and there it stayed.
My comment about next week's topic - Great idea and I am sure it will make for some beautiful pictures, although those of us living in the desert (116 farenheit today) will really have to work hard. Fun though!!
All in all TJ has made it through this week of chemo pretty well. Hopefully we have the right combination of drugs. He is taking 3 Hydrocodone a day, I am putting the lotion on his back 3 times a day and he is taking 2 Ginseng tablets a day. So far his energy level is much better than any other chemo week. Having said that he gets his Neulasta shot tomorrow so that will really let us know if our combination is working. Last night he felt so good we bowled 3 games on Wii. He even beat me 2 out of 3! Today he is a little more tired but still not bad.
I guess I don't really have a lot to say today. Probably because since it is chemo week I am not sleeping and am just dog tired. I think I am more tired than TJ today and that is just insane. Should be able to sleep tomorrow night after he gets his Neulasta shot.
I will update in a couple of days about how our new drug combination is working with the Neulasta shot.
As usual TJ saw Dr. Nabong this morning. He always sees him on chemo week Monday. Usually it is to just to go over labs and make sure all is well for him to move forward with more chemo. I am not there for this appointment because as a general rule it is pretty routine. I wish I would have been there today. I had TJ ask him about taking American Ginseng orally to help with his fatigue and he said if we wanted to try it then it would be OK. I read about a clinical trial with cancer patients and American Ginseng and thought it would be worth a try as long as it has no adverse interactions with his other medications. I think I am going to take it also and see if it will help my energy level too. It sure can't hurt. TJ also spoke with Dr. Nabong about the severe back pain and he got the answer that I expected, basically that is just part of it and all we can do is up the amount of hydrocodone he is taking.
Here is the real shocker....and TJ didn't tell me about this until I arrived to pick him up from chemo. Dr. Nabong said he is considering 2 additional rounds of chemo!!! This news almost brought tears to my eyes. I so just want this to be done for him. Nabong said that the tumor in his lung has gone from 4 cm to 2 cm and he just wants to make sure we get rid of all of it. I don't know if he will do another scan before making the final decision on this or not, but I hope so. So, we thought that his final chemo was going to begin on August 3 (right before TJ's birthday on the 9th) and if they do 2 more rounds the last one will begin on September 14 (right before my birthday on the 17th). I am so tired of this, but I know that TJ is even more tired of it than I am. So, I guess we just suck it up and hope for remission and make plans for the day when this is all behind us and we can get on with our life together.
Ewwww, just realized this is my 13th post. TJ was diagnosed on Friday the 13 so not real thrilled about that number any longer. Will for sure post tomorrow just to move forward from that number just like TJ & I have had to do since his diagnosis.
In the past, the weekend before TJ's next round of chemo has been pretty good. Not the case with this one. He had terrible back pain all weekend and spent most of his time on the couch or in bed. I hate that I can't seem to manage this symptom when I have so far successfully managed all the others. I am at my wits end with this back pain. Tomorrow morning he will be seeing Dr. Nabong, his oncologist, and although I will not be there I have started a list of questions and ideas to help manage this pain without keeping him so drugged that all he does is sleep. We will see what he has to say and hopefully he has some kind of an answer.
Today, TJ's mom was coming down from Payson and the 3 of us were going to go to lunch. We thought it was going to be a great day. But when TJ woke up this morning his back hurt so bad that he just did not feel like going. I understand, but I would have liked him to be able to spend that time with his Mother. Instead, she stopped by and we got to show her wedding pictures since she had not seen them yet. We had some printed out for her and I showed her the DVD montage that Kelly (our photographer from http://www.justmarriedphotos.com/ ) had put together. Of course she loved the photographs and even found an additional 2 that she really liked and I printed them out for her. The picture you see above is one of those. She liked it because almost the whole family was in it. We were only missing Webb (TJ's Dad) and Dennis (TJ's sister's husband)...wish you guys could have been here!
Brief personal note: Love ya Phylicia and if you want a print of the pictures she took of you and I let me know and I will print one for you and drop it in the mail. ;)
Tomorrow is chemo day and of course that means 4 nights of no sleep for me beginning tonight. It is that feeling of stress for what TJ is about to go through. It also means short days at work and that stress me out also. But, after this week we only have one more round to go.
Have you ever seen those quizzes that tell you what kind of dog you would be? Well, TJ would be a Labrador Retriever. I know this without him ever even taking a quiz. I used to have a Lab, his name was Phantom. I had to put him down in 2004 after enjoying him for 14 wonderful years. Even TJ, who wasn't really a dog person when I met him, fell in love with him. He was an extremely friendly and well behaved dog. This is a picture of him taking a nap at "The Shack", our property down south. As you can see he is very gray at this point. So my point in this is that Phantom's first vet in Indianapolis was Dr. Swengel and when as a pup Phantom displayed the symptoms of bad hips he was the one I took him to. I explained all the things I was seeing but I told Dr. Swengel that he did not really show any pain. He explained to me that Labrador Retrievers are very apathetic and show very little pain as they just want to please. I really realized the truth in this as Phantom went through 2 surgeries to correct his hips and allow him to live a long and full life.
Today TJ did not feel as good as yesterday. When I spoke with him a little after noon he was on his way to have lunch with some friends. That made me happy as it always does. But then he told me that if he hadn't already committed he would not be going as he is very tired and his back is super sore. I told him it might do him good to get out and visit with friends, he said he was just going to eat and head back home to nap. Turned out it was a fairly nice size group of people so he hung out visiting for a couple of hours. TJ would never let those down that came out to see him. When I got home from work he was sleeping. When he did wake up he was only up for a couple of hours complaining about his back the whole time and then back to bed he went . I think it is a sure bet he didn't let his friends know how uncomfortable he was. Do you see the correlation that I am making here? Don't get me wrong, I am not complaining. I am actually amazed that he can turn everything off for a bit, if only for 2 hours, and enjoy time with his friends. Believe me, if I was in his shoes I would be whining to my girlfriends about how miserable I feel. Right now I can just hope he has a better day tomorrow.
Just like last time, TJ felt pretty good this week with the exception of his back. I don't know why but the week before his next chemo he gets severe back pain. It just doesn't make sense to me, but hey, neither does this whole cancer thing. They just don't warn you of all the side effects of chemo, all the mental ups and downs, basically you know nothing about this journey until suddenly you are tossed into it head first. When I say head first I mean that literally, you feel like someone has dropped you on your head and left you there all alone to struggle with the pains and the not knowing if you are OK or not. Basically, it sucks, but thank goodness for the great sources of information such as Twitter, Blogs and friends that have "been there, done that".
Now, for the weird part of the week. This morning when I left for work at 6:20 am TJ was absolutely miserable with back pain. I expected him to be down most if not all of the day. He took a Hydrocodone as I was leaving and I also put some of the lotion on his back.
I was at work trying to concentrate but worrying about how TJ was feeling as I had not received a text from him since about 8:30. Well, lo and behold who walks through my office door at 11:30? TJ, declaring that he is hungry and wants to order some lunch!! Once again I ask you - WHO FLIPPED THE SWITCH??!! Crazy cancer chemo stuff! So, we ordered some lunch, he went and picked it up and we ate together at my desk, it was nice. I am so grateful to work for a great guy that allows this without question even though I work straight 8's. I love my hours, 7 to 3, and am lucky to have some freedom to do things like that today. When I got home TJ and I actually had a beer together and "HE" cooked dinner and even cleaned up. Makes me dread chemo week next week when all this will go away. Oh well, just gotta enjoy the good times while we have them.
Sorry it has been so long since my last post. No excuse really, just sometimes my new life gets in the way. My new life? Yeah, the one I have now that TJ has been diagnosed with cancer. We were just talking this morning how different things are now. His whole perspective has changed as has mine. He has really slowed down and it is actually kinda enjoyable. Our weekends are less stress filled and more relaxing. We take time to visit with friends more and spend more one on one time together. So much more of our time is cherished, especially when he is having good days. It is nice and I think I like my new life. I just wish TJ didn't have to get cancer for us to realize we both needed to slow down a bit.
Anyway, the beginning of this last week was of course a little tough for TJ but towards the end of the week he began feeling much better. Friday he and I brought the car home so now it is in our garage and he can work on it more as his health allows. I am glad to have it back home.
The good news of the week is that we picked up our wedding photos. Kelly did an awesome job with the pictures and we got 473 pictures on 2 CD's. She also did a DVD montage set to music. We are just so happy with all the pictures. We have printed out pictures of TJ and I and framed them for his Mom and Dad and printed a couple of just TJ to send to his kids. I also put some on Flickr for everyone to see.
Here is the link to the DVD montage, it is about 10 minutes long but worth it