Just realized I haven't put anything on my blog since before the cancer treatments were over. My bad!!
Some changes have happened since then.
The radiation treatments were completed without a hitch and no real side effects except being extremely tired and possibly some more fibrotic tissue being formed. I was lucky to have 2 awesome people with me for the last treatment and they convinced me to ring the bell. Apparently, you are supposed to ring the bell away from any people - poor Laura got the damn thing rung almost in her ear and it was LOUD! Sorry, kiddo!
Continuing on the cancer theme, I slowly got over the tiredness and pretty much back to normal (I'll deal with the fibrosis later). In June I had my first follow up CT scan to see if the cancer has been beaten and it looks good! The tumour isn't being active and has shrunk somewhat (they didn't tell me how much it had shrunk and I didn't think to ask). Next appointment is in December.
Now to the NSIP which hasn't been behaving well. As I mentioned, there was likely some more fibrosis developed due to the radiation. As a result, I started coughing even more and getting short of breath with less exertion. This continued to slowly get worse over time.
Then one day in July, I went for supper with my friend and after supper I went to use the facilities. I don't know what they had used in the bathroom but there was a VERY strong chemical smell in there. I'm wondering if they hadn't fumigated or something as it wasn't really a cleaning chemical smell. After that, I had a huge coughing fit and my breathing declined more rapidly. I tried calling my pulmonologist on the following Tues as it was getting worse, but he never returned the call all week. Eventually, I took myself to emergency (mostly for another problem but to get my breathing checked as well). Long story short, I ended up going home with an oxygen tank that night and they set me up the next day with the home machine and tanks.
Now I'm trying to get used to having this darn tubing following me around in the house and trying to figure out how to work the tanks around any outings I go on. Grocery shopping, as with any shopping, has become a hassle and requires planning (how long will I be gone, how many tanks do I need, etc.) But on the silver lining side of this cloud is the fact that I can breathe SO much easier and my coughing has decreased to almost gone when I'm on the oxygen.
From beginning of July until next week, I've been attending Pulmonary Rehabilitation. This is a twice weekly program where for the first hour they teach us things like the importance of exercise, how to travel with oxygen, how to properly use inhalers and other meds, etc. It has been an informative program. The next 2 hours are spent in the gym using the equipment under supervision of the awesome staff. They teach us how to use the machines, push us to do more, help when we are falling behind. I've discovered that I really don't like the treadmill but like the stepper/bike thingy. Actually considering buying one for myself so I can work out at home. After the program, I'm totally exhausted!
I'm presently waiting to hear when I will get to see the ILD specialist. I requested a referral to her from my present pulmonologist (the one who didn't bother to call me back for over a week). I wasn't positive that the referral was sent so I called her office and was told that they had received the referral and I would likely have my appointment in November. Long wait, but not unexpected. I'm putting all my hope in this new Dr. as I've heard nothing but great things about her. Hopefully after seeing her, I'll be much wiser about this disease, the treatment options and prognosis. Everything I've read and everyone I've talked to (I'm on a couple of FB pages with others who have this and similar diseases) say there are treatment options to slow the progress of the fibrosis and to clear up the cellular component. To date, I haven't been offered any treatment options.
On a more exciting note, I'm planning a road trip after the program is finished next week. Hopefully I'll be able to head out on the weekend but still have a couple of hoops to jump through to arrange for oxygen along the way. There has been a lot of smoke in the air here for quite a while now which keeps me indoors. I initially wanted to go to Seattle area and the ocean but decided that staying in Canada would be much easier with the oxygen (I'd have to buy oxygen if I went to the US) and going east would get me out of the smoke rather than driving into it by going west. Also the altitude of the mountains might play games with my breathing. I'll leave that for future trips and keep my maiden voyage simple. I'm also hoping I can find a travel companion but it isn't looking like anyone can come with me.
OK, this has turned out to be a long yammer so I'll stop boring you now.
Will write a note when I get home from my trip.
Just breathe!
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