Tuesday, November 26, 2013
This morning, at 5:15 a.m., my Mark was released from all the pain and suffering of this world into the loving arms of Jesus. His passing was a beautiful moment that I will cherish always. I find great comfort knowing that he knew how deeply he was loved, He is at peace and we are thankful for every moment we had with him. Godspeed, my love....
Sunday, November 10, 2013
I am trying to find the gratitudes in this..... but won't even try to pretend... it is not easy....
Mark had an oncology appointment this past Thursday. She took one look at his chest, got on the phone, made the earliest possible appointment for him with the radiation oncologist. She said twice... I've not seen this in a long long time. Friday we saw the radiation oncologist. He was not our usual radiation oncologist, who tended to say we need to this, then looked at Mark with such sadness in his eyes. We are beyond that at this point, we don't need your pity, we need some straightforward answers. The mess on his chest, (lots of bumps, all deep purplish red, and a good sized wound that opened up about a week ago, which was seen by the ER doc, but this was his first time seeing oncology since then....) well, it's another reoccurence. Metastasized to his chest wall and skin. I had a gut feeling it was something that wasn't good, but anyway.... The doctor was most excellent, (to the point we are asking if he can do this round of radiation and become his radiation oncologist, we need his kind blunt honesty. He told Mark he wanted to set up a mapping CT that day. Mark refused, took the keys from me and went to the car. He was angry, can I blame him? No. He's tired. He's worn. He's sick of the radiation. He's sick of feeling like crap all the time. I HATE CANCER. After he left, I stayed and talked to the doctor and nurse for a bit. Doc says he really does need to get this treated, it won't heal, it will continue to spread and get worse. This round of radiation will not be like the last two. It will be targeted radiation, not nearly as deep as the last ones, he'll have some skin irritation, but he doesn't believe we'll see the skin breakdown or the burns like the last round. We set up a mapping CT for Monday at the cancer center he will be at that day. (Same overall clinic, different location.) Got Mark home and we're working thru it all this weekend. Some moments he says he is not sure he's going to get it treated. Other moments he says he will.
Aside from that... we're also having trouble keeping his oxygen levels up in the low 90's. He was running about 91 - 93. Not great but acceptable and when it's that level he doesn't need to have the oxygen on. But lately... like for 3 or 4 days now, it's in the 80's... anywhere from 85 to 89. Not a crisis, but low enough it's of great concern. Also, he's still got swelling in his feet, legs and a bit in his arms. When the radiation oncologist was looking at recent chest x-rays I got a view of the current plueral effusion. I understand why he's so short of breath. We talked about that, (Mark and I) and he's agreed that if this doesn't resolve itself, he'll likely be willing to go up to the VA and have Dr. Aoki (pulmonologist) do a thoracentesis. Never thought I'd heard that out of him. =) But when we were seeing her before, she explained to him how she would do it, it would NOT be CT guided, but done in the office, and she assured him she could use a smaller needle and it wouldnt' be as painful and traumatic to him. The good news is that if they do that they could also test the fluid to be sure it's not cancerous. (Always a concern at this point.) ANYWAY...
I just feel like it's taking over again. I'm having trouble pulling the positives out of this, but they are there. The radiation oncologist didn't seem one bit doom and gloom about this. There were no looks of pity for Mark OR myself. It was matter of fact, but delivered in a kind and considerate way. He told me after Mark had left that this isn't a life threatening (short term) crisis at this point, but that although they can't cure it, they can treat it and then we'll just have to wait til the next reoccurence. Which I am coming to expect. Just not sure how many more Mark will be willing to have treated, til it's so bad and painful that he has no choice..... SO.... it is what it is for now. I am trying to stay positive and cherish every moment. Between the appointments and taking care of Mark, I've not been to Curves since Thursday, before his appointment. I do plan to try to get there Monday, if I'm able after his CT appointment. Which is early in the day. We'll just have to play this by ear. In the meantime, I may have to resort to my Richard Simmons tapes. They are actually fun to work out to as well and I can work up quite a sweat. =)
SO... just needed to put this all somewhere safe. Mark isn't comfortable reading it right now and he's been spending more time on the computer, so I'm careful about what I put where on my online social sites. Anyway....
Hope everyone is doing well and getting ready for thanksgiving. I'm feeling thankful for every day we have at this point, even the tough ones.
To quote Dickens.... "It was the best of times... it was the worst of times....."
Be well, my friends~~
Friday, November 01, 2013
SO.... October is behind us... and it was a tough month... quite possibly the toughest one yet...
We finished radiation, but the burns he experienced after this round were just horrific. We've gone thru tubs of silvadene trying to give him some relief... the pain was excruciating. We had to change dressings up to 5 and 6 times a day for over a week. Finally they are healing and he's much more comfortable, although he's got a mess of lumps and angry purple red color on his chest now, which I'm afraid are more lymph nodes,... he is convinced it's more burns, but I'm not, as it is out of the radiation field.... We saw the liver doc this week, asked about pain meds and what is less stress on his liver... she said (with the utmost kindness...) it doesn't matter at this point, we are keeping him as comfortable as possible.... They are going thru the steps to put him on methadone as the morphine and oxycontin aren't effective enough. *SIGH*.... so... we get up, put on a smile, and work hard to make every day a good one, and cherish every moment we have. But emotionally and mentally, this is really really hard....
THEN... I got terribly sick this month... not sure what was going on... *DISCLAIMER... about to go into some way TMI here... feel free to scroll*
I got really sick one day... ended up with the worst bout of dirrhea I'd had in my entire life. And to really make it bad, I was having some bleeding like I'd never experienced before either. Needless to say, I ended up paying way too much $ to have a perfect stranger (doctor at urgent care) stick her finger where it didn't belong. It's not hemorrhoids, so she said it's likely ulcerative colitis, put me on ciprofloxacin, one of the worst antibiotics you can take with horrible side effects... needless to say, I was completely derailed. Horrible gut cramps, but finally after several days, the bleeding stopped. I've still not been back to Curves, as I've been exhausted, had some dizziness, etc. But it's been a few weeks and I've got to do SOMETHING as it seems all I worked for has just gone to crap.
THEN.... got a call from my Hazel, a dear, dear friend from Kansas who has been like a mother to me for the past 5 years since my own mother (and fathr) decided I wasn't worthy of being spoken to anymore.... Well she's got lung cancer.. it's non-small cell and aggressive. So Mark and I went to Kansas for the weekend. Got to see her, the grandbabies, and it was a much needed bit of R&R. Spent alot of time resting in the room, but also got to sit in the hottub a couple of times... great NSV on that trip was discovering that the swimsuit I wore in May (hotel stay while there for my daughter's wedding) is now WAY too big. YAY! =) I was still able to wear it, but really look forward to wearing a different one I have on the next trip... whenever that is.. or, better yet, having to get one in a smaller size!!!! =) Made my DAY. And seeing my Hazel and my littlest grandson Eli... priceless.
So that brings us to now. I still drink some water, but not nearly enough. I've become lax on food and I've been drinking some soda from time to time. All of these are things I was NOT doing before. How I've not gained back 10 - 15 lbs I'll never know, but I am up a little over 2 lbs. Time to take it back before I'm right back where I've started. I want to be under 300 by Christmas. (By thanksgiving would be better, but trying to be very realistic here). My sister in law who has been doing weight watchers since about the time I've gotten back at it on here is moving steadily along and has now lost almost 70 lbs. WOW. Time for me to get with the program. I know hard work and dedication and diligence will bring success. I know that it DOES matter. I know that despite all that's going on in our lives right now, I can't continue to try to feed the fear and anxiety with FOOD... it won't help anything. SO... here's my feeble attempt to take back my life.. AGAIN...
Trying to find the patience, courage and tenacity to get with it and STAY with it. I've fallen, but I CAN get up, and I will. Starting right now. =)
SIDENOTE... I did find it quite remarkable that I was only gone for a couple weeks and I came back and Sparkpeople website start page looks COMPLETELY foreign to me. Will try to get a grasp on that... actually looks good and like it will work well, just need to adjust to the change. =)
Hope everyone is doing well, thanks for reading, and I'll try to not do another AWOL stint... That's my MO ya know.. do well for awhile, maybe even excel... then go awol and just give up. I can't do that this time. This is too important.
Keepin' the faith~
Saturday, October 12, 2013
Well it's been awhile since I posted on this blog.
This past week has been nothing short of crazy. It's showing and it's affecting my schedule! ACK! Mark started showing signs of serious skin breakdown about a week or so ago. They had extended the radiation for an extra 8 days to try to be sure they shrunk the mass as much as possible. In the meantime, my days got busier as we went from lotion on the redness to doneboro soaks and silvadine to try to help him get thru the 2nd and 3rd degree burns he ended up with on his neck, shoulder, back and armpit. UGH.
In the midst of all that, he had a hearing before an administrative law judge to determine if they should go back further for his onset date for disability. (Spring of 2012 the judge in KS ruled that he qualified from February 2012 forward...) So I was scrambling getting medical records again because for some reason the cd's with medical records for his representative and for the SSDI office both were showing up as corrupted files after sitting for a year. Got it done, got to hearing, and low and behold we didn't even have to sit thru everything. =) Judge started off by telling them that he had reviewed the file and was willing to offer an onset date in 2009. (Not sure if it was January or August, but we'll take either one.) Mark accepted and it was over. Just like that. *BIG HUGE SIGH OF RELIEF!!! =) So with the government shutdown it won't likely be that we see it anytime soon, as the notices and such come from an office in Virginia that's been furloughed. But it's done, and I'm just glad.
THEN... when we saw his radiation oncologist this week, we saw a different doctor as his is out of town for the week. We pointed out a couple of lymph nodes on his neck and chest that seem to be all swelled up and he confirmed from the computer that these are outside the radiation field. So we'll do a CT scan again in a month to see if they show up. That was more than just a bit of a downer. But we have carried on.. what else can we do, right?
For the time being, I'm thankful we are getting a break from the daily visits to the hospital. Hoping we can get him healed up quickly from the burns. The doctors think 8 to 10 days he should be doing much much better. In the meantime, yesterday we both slept on and off all day after we got back from radiation. I think exhaustion has set in. =)
I got up today feeling much better. But also knowing I need to get it together here. I've become complacent once again. I know it's been crazy busy this week, and I only made it to curves twice. Don't have a plan to go today as I've been having fits with my lower back and knee. Mark thinks it might be because when I was there the last time I really pushed it... did 2 rounds at 150%. (When I usually do 8 reps, I did 12, and when I usually did 16 reps, I did 24.) That's about as hard as I've ever worked there... and I'll confess, by the time I was getting to the end, my arms and legs were just shaking from the effort. I figured a good thing... right now my body is telling me to quit trying to be a rock start and just get consistent with 100%. =) Probably not a bad idea for the moment... or maybe bump it up to 125%.... hehe. =)
WELL... true story.... it's been a BAD week for food for me. Instead of grilling the Iowa chops I wanted to grill night before last, Mark wanted pizza. Because he really needs to keep weight on, I was like, ok. At one time, not many months ago, I'd have gotten his pizza and grilled my pork chop. But no, they had a *DEAL*... omg. So we got not one but TWO pizzas. Enough said about that. THEN.... he invited his brother over for breakfast yesterday morning... biscuits and gravy and eggs. After he'd asked and his brother accepted.... he looked at me and said, you can do that, right? =) Gotta love him for trying, I suppose. =) ANYWAY.... so that happened yesterday, as well as leftover pizza. I just need to get it together, get back to fresh fruits and veggies, steamed and such. Get back to more pork and chicken and fish and grilling...
SO... that's how my week has been... glad radiation is done for now, and looking forward to a better week next week!!! =)
Hope everyone is keeping on keeping on!
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