Cool Meadows, I’m writing mostly to offer sympathy. I am familiar enough with the medical system to realize that your story has the ring of truth (sadly) and is not unique (even more sadly). I did a little research just now on your type of cancer. I can see how rare and lonely it is (no pink ribbon campaigns) but at least there seem to be other survivors you can connect with and it sounds like you already have. I, for one, hope you will also feel free to continue posting here and will continue to follow your story. (Just ignore the bullies please.)
A half lease sounds like a good idea. One of mine is 30 with a heart murmur and the other’s the three year old. The 30 year old is still sound but I fully retired him 3 years ago. It would just be nice to ride again. I know it would help and I was a decent enough rider that it shouldn’t be too hard. The bullies… I realized they must be far worse off than I am to have to sink so low. They have my pity. You’re right Discobold, my story isn’t that unique and that’s horrible. Some of us die waiting and sometimes I wonder if that was the plan all along or if the system is just so inefficient that it barely works.
My whine of the day: I had this argument recently with someone who paid his dues and finally made it big in the international gp ring. Then he developed cancer and the treatment caused partial loss of vision. Not great for a jumper rider. I asked why he hadn’t been more open about what was going on with his health. I told him I’m sure people would’ve helped if they’d known. He told me he didn’t because people still think cancer patients should be ashamed and because people take whatever they can take from you when you’re vulnerable. Well, I know he loves to win an argument more than anything, so now I can tell him he was right.
On a positive note, the punch biopsy showed a benign mole developing in some radiation dermatitis. Bloodwork was a little off which is normal for me but vitamin D was low. Hopefully that explains the exhaustion. I’ll try some of the diet suggestions, thanks for the advice and kind words.
ETA: sorry for the whining. I try to not complain in real life.
Hey sometimes ya gotta whine!!! 
the nasties dont get it and wont until they deal with something akin to it.
Ahh fatigue, is such a pain!
Have you checked out this place ? https://secure.healthcentral.com/cancercenter/hospital-locations.html
PS; I went through two types of cancer treatment and it effected my thyroid, which caused atypical lethargy. It may be a good idea to get it checked out.
CM, I believe you. You are exhausted physically but also mentally. And you won’t regain energy by just focusing on one. If you are exhausted mentally, physical energy won’t come back easily and vice versa.
I went through chemo 14 years ago, but I was not a rider and can’t relate to that side of things. I never felt over tired either. I went through radiation last year and, again, no fatigue. I was lucky that both times I was “healthy and strong” before the dx.
I wish you the best. At least, for once, you got some positive news with the latest biopsy. Work on that!! Build on it!
Have you discovered the stupidcancer.org “I’m too young for this?” site yet? I also was a young cancer survivor (had chemo, no radiation), and now 17 years out I’m too old for that site (and that’s a good thing :D). Through groups like that is how I’ve heard so many stories of misdiagnoses and just f-ed up treatment. You might want to check out their forum. As a young cancer survivor sometimes you feel like a freak, and then when you meet other survivors you wonder if cancer strikes the smartest, wittiest, strongest, coolest people :yes:
I think you need just need a good ole’ fashioned pat on the back! Or maybe just someone to say “it will all be okay!” Brighter days are just around the corner…
Coolmeadows, you sure do have a lot of time on your hands with all your posts and comments on this forum and also others. Is this how you make it day to day? If this works for you, Great! I sure wish I had time like you do…please tell me how you do it?
[QUOTE=Liars;7162283]
I think you need just need a good ole’ fashioned pat on the back! Or maybe just someone to say “it will all be okay!” Brighter days are just around the corner…
Coolmeadows, you sure do have a lot of time on your hands with all your posts and comments on this forum and also others. Is this how you make it day to day? If this works for you, Great! I sure wish I had time like you do…please tell me how you do it?[/QUOTE]
Smartphones are handy for that. Like right now, I’m hanging out on the back porch with my son. But yeah, time is short since I’m carrying 16 credits, tested out of another 12 in the past month, still have bunches of dr appointments, and take care of the farm and family. This is an outlet; some choose other sources, maybe their pastor for instance. I’ve been on these forums for around 12 years. What about you, how do you manage the time seeking freebies on craigslist? Perhaps your husband can help you with it once he’s out of jail.
Don’t take the bait, Coolmeadows. To anyone with 1/2 a brain, Liars is starting to come across as a scary sociopath :eek:
Yeah I’m not worried about it. I feel sorry for her and her children because even with cancers, I have more to be thankful for than Liars. And I am thankful.
I will ask for a thyroid panel and I bookmarked your link for the future, Equibrit, thanks. The research org for my cancer was only founded around 2006 so the biggest obstacle has been finding accurate information and doctors/centers who know the cancer. It’s been hard to find my way but UVA is a research center for the cancer and is running a drug trial right now.
More weird health stuff. I saw the ENT surgeon at UVA yesterday. I took my May CT report to UVA yesterday and when the ENT came in, he asked me if I was sure I hadn’t had sinus surgery before, because I was missing an inferior turbinate according to the report. I’m pretty sure I’d remember sinus surgery! He was able to find the missing turbinate during the endoscopic exam but couldn’t see into the right sinuses because my septum is fully blocking them. It was deviated in May but not as much so that’s worrying. Of course, immediate fear is that something bad is pushing everything over and something is blocking structures on scans. Reasonably I should think I have chronic sinusitis and allergies but fear isn’t reasonable and this stupid cancer does love sinuses. Does that fear ever go away? How do you deal with it?
Speaking of stupid cancer, I saw that there are a few people on stupidcancer.org with my cancer. I think I’m too old for their target group, but will check in there anyway. Too old for that site, younger than most with this, misclassified, misdiagnosed, a second cancer, some other incidental rare disease… alright universe, I get it - I’m freakin special. You can stop now :lol: You nailed it Discobold, I feel like a freak with this stuff. Congrats on 17 years!
I found a super nice packer for lease at a beautiful farm one county over and wanted to go meet him this week but got too sick, so maybe next week. I don’t want to go over there coughing and sneezing on everyone with the balance of a drunk monkey. The horse sounds like a perfect fit, the farm owner is really sweet, and the farm has a nice ring and space to ride out. Can’t wait to get some horse therapy soon
Scanxiety
I have the first post radiation full body scan tomorrow and to check out the sinuses again. I am trying, have been trying, to not think it’s in my sinuses but whatever is going on hasn’t responded to oral steroids, nasal steroids, 3 allergy meds, decongestants, or 12 rounds of antibiotics and for whatever reason structures seem to be moving around. I am terrified that this is a bad thing, never mind that quality of life gets pretty low when breathing is hard and balance is gone. I get all excited when I have a day where I think I’m getting better and start making plans but sometimes I think riding again is a pipe dream. I am really trying to move along and live life but my body won’t cooperate. Thanks for letting me vent.
Jingles for your scan… will be thinking of you!
There were some unexpected findings on the scan. The oncologist had some encouraging words since I’ve been upset since learning that my pathology showed the solid variant. I can’t find any several year survivors and the only study I found showed a 20% five year survival and a 5% fifteen year survival rate for the solId variety. The oncologist said that uva has had some patients pass five years so I’ll go with that.
I am not going to say much more because obviously my stalker is reading this. If anyone knows what they said before the mods removed it, please let me know. To be clear, this person is someone I had to take a protective order against and whose husband was also found guilty of harassment crimes against me. This situation isn’t minor and I worry about my son and my horses.
On the plus side, I have a nice greenie to ride.
Jingles for you.
You can’t make this stuff up
Good but ridiculous news. There was a mistake on my chart and cervical cancer was mistakenly entered Dec 27 of last year. I found out recently when I went in for my follow up, thinking I was going in to schedule a hysterectomy since that’s what they’d suggested earlier but I wanted to get through the radiation for the other cancer first.
I can’t describe the stress of believing I’d been diagnosed with two cancers within two months. They failed to tell me that the Leep was benign and instead entered cervical carcinoma… it still says that when I log in and look at my “current health issues”. Yes, I’ve saved and printed it and sometimes I just go and look at the screen and go back and forth between thinking how lucky I am that this is a mistake, and feeling angry. I spent a couple weeks ungodly furious over the hell their mistake has put me through. I remember questioning it because my understanding of cervical ca is it’s typically slow to develop and I have had regular normal paps, few partners etc. Everything was fine till pregnancy and even then I just assumed the nqr pap was a result of pregnancy which can happen.
So not only did I think I had two cancers within two months, I thought one had developed unusually fast. I thought what if I have a genetic issue predisposing me to cancers and what if I’ve passed it along. It was an unfair amount of stress and I’m so disappointed in the way I’ve been jerked around in general through this journey that I’m not going to let this go. Management has been very apologetic but really, apologies aren’t good enough this time. I’m over the anger and am thrilled but still… this is not an ok mistake.
Other good stuff: my energy is creeping back up and I have a new PCP who is trying to get to the bottom of the recurrent fevers that have been going on since spring '12. I have a neck ultrasound tomorrow to check out lymph nodes that have been enlarged for 8 or 9 months…a little worried about it but so glad to be moving towards an answer, whatever that answer may be, instead of another round of antibiotics.
And now dacryoadenitis left lacrimal gland, obstructive lung disease and m. catarrhalis on the culture so at least I’m now on the correct antibiotics instead of round 16 of the same useless stuff. I was pretty healthy till 6 months before the cancer diagnosis and have been more and more nonfunctional. Still working on everything I can do to keep energy levels up but it’s rough. Balance is totally gone - falling sideways a lot. No doctor had checked my eye… the one they’ve noted has been swollen for 10 months. I figured it was from this hideous year long sinus infection but there was a few day break in the pouring snot and the eye still felt bad so I flipped the lid and there’s a big blob. Now more waiting for an ophthalmologist. I don’t think all this is allergies… no response to antihistamines or steroids over 10 months.
Moving forward with a lawsuit for the misdiagnosis of a second cancer. They did the exact same thing to my lawyer’s paralegal but “accidentally” deleted it before she printed her record. Then again, this is the same healthcare system that accidentally put HIV in my friend’s chart. Talk about causing her to panic…
In case anyone has ideas, here’s what I’ve been on for about 8 months that isn’t working: Singulair, Flonase, Zyrtec, an old school otc antihistamine, steroids every 6 weeks or so, bactroban, allergy shots, some type of antibiotic almost continuously - currently omnicef. Other meds for the other health conditions. Have had no improvement with albulterol during lung function tests and no improvement - as in zero at all - with the list of meds above. Anything else that might work? I use a neilmed rinse as well and a rocksalt inhaler thing. House is filled with purifiers. Just tired of not not being able to breathe or balance or live.
I dry heave from the mucus a lot and vomit from it occasionally. I am not able to grocery shop for myself any longer. I can get to local dr appointments but gave up on the UVA ones and put off the radiation onc follow up because it’s 4-5 hours away and I am just not able to do it. I avoid talking on the phone because of the choking on mucus or my voice will go out (it’s severely hoarse for weeks at a time). I have blurred vision and of course the fatigue. There is not much I’m physically able to do anymore. I stupidly tried to muck a stall 3 days ago and got 1/4 through before realizing I was literally mouth hanging open panting. I’m taking some good vitamins, plus extra vitamin C, probiotics etc. Every now and then I have two days in a row where I think it might be getting better but it never does. I am unrecognizable due to swelling. I don’t think this is allergies.
The cancer is a possibility since there are abnormal sinus findings but the ent says not cancerous findings; she also says findings are out of line with the severity of my symptoms. Doesn’t help that many patients in the online group have had “not bad” sinus scans only to find the cancer on surgery which is done for quality of life issues in spite of the stupid not bad scans. Doctors still couldn’t see it after knowing it was there and reviewing original scans. Yeah, I don’t want to hear about how that’s not in the medical literature. Join the patient group and see what really goes on. The lit also says this cancer never metastasizes when it starts in the breast yet of the 10 with that primary in the group, 5 have mets. Sick of all of this to be honest. Don’t care if it’s the cancer or not causing the symptoms. Whatever it is, there has got to be a way to get some quality of life back.
I was so so close to getting the surgery in Hampton back in May but that whole out of network issue, insurance denied it the day of… that ENT was talking closely with my onc. The ones I’ve seen in network haven’t spoken with my onc and haven’t reviewed my records- I took them thinking they’d want a copy but I left with the folder untouched. Not sure what it’s going to take to get this all fixed anymore or how much sicker they want me to get before doing something. Pretty sure I qualify as having total treatment failure with several hospitalizations.
Rant over, maybe tomorrow will be one of the good days.
I havr to use a pharmacy mixed cough med, it has decongestant plus something plus codeine- for bad asthmatics narcotics are the only thing that stop the cough.
Try dimatap, its the only otc i can take without breathing issues and it clears the mucus.
I take advair 250( 2 puffs 2x a day) imho singular doesnt do squat
For “emergency” use, ventolin(3-4 puffs every 4hrs) and atrovent(again 3-4 puffs every 4hrs) the atrovent helps alot
I know prednisone is a use only when desperate option but i think your there, i usually end up on a 10 day 75-100mg tablets which helps but as you probably know side effects suck.
Want to add ive only had 2 normal results in breathing tests all my life
