Friday, March 30, 2012

Friday, March 30, 2012 -- Scary Week

Hello Bloggies!

Ye, it's me... surprising, no? I mean, this blog entry is not a month or longer since the last one. That's just not like me! Where's my sense of procrastination?? Has it deserted me?? I mean, the last blog entry was only March 21st, and here it is, March 30th... only 9 days later!!

Ok, so that is good in that I'm working on the procrastination. And it does help that I'm in-between shows right now, hence the concept is that when I'm not working on a show, I would have more time... to say, catch up on email and do regular blog entries... or maybe even work on my idea of the ongoing e-Newsletters (which will need a website so I can archive each issue there). But, I digress... today's blog entry is going to be another Health Update entry. It has been one heck of a week and until I could get my head around the latest scuttlebutt and absorb the information, I wasn't up to talking or posting about it.

So, I may have to backtrack a bit... or better yet, refer you all back to the March 21st blog entry... the last one I did. In that entry, I had mentioned how I have had these darn "bronchial spasms" since December. The very first time I got them was last year, about this time, when I was on a chemo called "Irinotecan". I thought that was a nasty, nasty chemo because I had a reaction to it. That was when these darn bronchial spasms showed up... and my breathing got so bad that I ended up in Emergency at St. Paul's Hospital, up the street from me. They put me on one of the hospital-size Nebulizer machines (these are the machines that they put a medication in that turns to steam and you breathe it in via a face mask... which the meds open up your airways and you can breathe easier). This worked like a charm on me... as well, worked very quickly, which surprised the Emergency doctors. They took an X-ray at the time and couldn't find anything... so everyone put it down to an asthma-like reaction to the chemo, with accompanying bronchial spasms, which are very common with folk who get asthma or chronic bronchitis. My oncologist took me off that chemo... and over the summer, the bronchial spasms went away. Great.

Fast forward to December 2011. I came down with that cold/bronchitis that everyone seemed to get around the holidays. And why wouldn't I? I was out and about and mingling with crowds, which you can't escape from at that time of the year, so low and behold, guess who got the sore throat, which turned into a cold and a few days later turned into bronchitis? Sure enough, the bronchial spasms came back! Arrrgh! I guess now that I had gotten them once, I am susceptible to them. Bummer!

Note... for those who aren't sure what bronchial spasms are... its when your bronchial tubes get inflamed, which then makes your airwaves much smaller. This makes it hard to breathe... when you exhale, you wheeze. When they get really bad, when you inhale, you "gurgle"... and although you can breathe, you feel like you can't, or that it's very difficult. The difficulty actually comes when you try to do anything. Walking, going up/down stairs, lifting anything, or even something as simple as getting dressed, you run out of breath and have this "shortness of breath" problem. That is what happens when one has bronchial spasms... not fun and cause for panic.

So, I've been whining to any and every doctor who would listen to me since December. My cold/bronchitis ran it's course and it was gone by the New Year... but the bronchial spasms/shortness of breath remained. The doctors would use their stethoscopes and say my chest/lungs were all clear. There was no signs of congestion or potential problems. Yet I KNEW that this just wasn't right!

Now, in the last blog entry I did say I had had a CAT scan... and there was nothing on the CAT scan that would indicate a problem. Everything looked fine. Well, I knew there was something wrong because now I had a very loose cough, like when you've had bronchitis and it's broken up, so now you have a very productive cough. If there was nothing there, then why would I be coughing up so much stuff and running out of breath when I really wasn't doing anything that required a lot of energy?? So, my oncologist referred me to a Respirologist... and I got an appt. within a week. For this appt, I had to go to VGH (Vancouver General Hospital) because they have a Respiratory Clinic within the hospital.

So, this brings us up to last week when Michel drove me to the hospital and dropped me off. Since I had never seen a Respirologist before, I had no idea if I would get my 10 minutes of time with the specialist or if I'd have to wait around... so I told Michel to just drop me off and I would take a cab home when I was finished. Little did I know, I'd be at the hospital all day!! Yikes!

Test after test after test! Various doctors came to listen to my chest/lungs, have me do that test where you blow into this device which is hooked up to a computer of sorts. I failed miserably at the blow test (I know, I could make a rude joke here, but I am restraining myself!! ). For those of you on Facebook... you all heard a blow by blow (oh, there I go again!) description of what I had to go through... and the waits in-between tests. And then Dr. James Johnston came to talk to me. He was my Respirologist and OMG.. he was wonderful!! Definitely not hard on the eyes, but he also wasn't the stereotype specialist! He listened. He smiled a lot and kept me at ease and calm. At that point he said they still hadn't found anything that was causing the problems but it's quite obvious I was having problems with the breathing. He had the nurse put me on the Nebulizer machine and sure enough, I felt much more comfortable within minutes. So he said that, although I had just had a CAT scan the week before, he would like to do another one, slightly different because what they would be focusing on would be if there were any blood clots in my lungs. He was pretty sure that I wouldn't have any, since I'm on a daily injection of blood thinner... but the shortness of breath is a symptom of blood clots, so we may as well be thorough and check for them.

So, after the CAT scan, and he had conferred with the Radiologist, the answer was that no, there were no blood clots. He brought me over to a computer to go over the scan with me. Ok, I don't know about the rest of you, but no matter how much they point things out, I can't see them and I have no idea how these doctors/radiologists read scans. But he was showing me them and said that everything looked fine.. and then he found something which he hadn't seen before. So, he manipulated the screen and saw "damaged tissue" that the radiologists at the Cancer Agency had missed, as well as the Radiologists at the hospital (altho, I think the ones at the hospital did see something because they had to take a second scan because the first one had a shadow and they put it down to I may have breathed when they took the picture). So, whatever this is, Dr. Johnston could not say for sure. It could be damaged tissue from years and years of bronchitis, or years of smoking (yes, I was a diehard smoker back in the day), or chemo damage, or really anything. He was going to talk to my oncologist, Dr. Renouf, and possibly refer me to a thoracic surgeon for a procedure where they put a stent into the airwaves, which opens them up and I would be able to breathes normally again. But first, he'd talk to Dr. Renouf.

So, this week, I was expecting to hear back from Dr. Johnston, or hear from the surgeon's office about a consultation visit. Meanwhile, the day before seeing Dr. Johnston, I had gone out to my dad's and have borrowed his Nebulizer machine. What a life saver!! It got to the point where I did not want to sleep at night because I'd wake up in a panic thinking I couldn't breathe. Unless any of you have gone through that, there is no feeling more scary than not being able to breathe. I would have to walk around the apartment, telling myself to calm down... of course, I can breathe, of course I can breathe... but it was difficult. With the Nebulizer... I don't get so bad that I can't breathe and if I were to wake up panicky, I could start up the machine and be fine within a few seconds. So Dr. Johnston gave me a prescription for the Nebulizer meds for 1 month because I would be seeing someone before the month is out.

Well, I did get a phone call this week but it was not from a surgeon's office. It was from Radiation Oncology. My oncologist has referred me to Dr. Ma, the Radiation Oncologist I had back in 2007. I am having a consultation visit with him next Thursday. They are assuming (and will be following up to be sure) that this "damaged tissue" could actually be one of the tumors in the lung blocking my airwave(s). So the plan will be to radiate it and see if that will shrink it... which if it does, then that will solve the problem. If we go for the stent right off the bat, and this is one of the tumors, then the stent will do nothing for shrinking the tumor. That makes sense. But it came as such a surprise to me because I knew nothing about this option and here I was being booked for a Radiation consult without knowing anything about it. Then to really freak me out, the booking gal I was talking to who was very nice, she went through the referral paperwork and explained that my oncologist had referred me, for radiation of a possible tumor and this treatment would be "palliative treatment". Well that terminology freaked me right out!! When I think of "palliative", I think of "End of Life". Now, I do feel strong and relatively healthy, but when I can't breathe, I can definitely have my doubts and wonder, especially since no one could explain why I was going through this other than to say bronchial spasms!!

I immediately put a call in to my oncologist(s) office and asked that someone call me back asap!! I needed an explanation as to what is going on. While waiting, my Community Health Care Nurse, Selena, called. She was calling to see how I was doing and just keeping in touch. So I spilled the beans to her and she could tell I was really upset... so she was an angel. She had me calm down and then told me that it's unfortunate, but in Canada we use the word "Palliative" for two different reasons. The one is for exactly what I thought ... End of Life Care. The other is for when you have an illness that is incurable, then it is treatment to keep the disease stable. In the case of cancer, to keep the tumors stable so they aren't growing, or with a bit of luck, to actually shrink them with medication or some kind of procedure. Radiation is considered a procedure and if this is a tumor, then having the radiation to shrink the tumor so that I can breathe with ease again. Phew!! That definitely relieved me because I was stressing out big time! Shortly after that call from the nurse, one of my oncologists, Dr. Val Geddes called... and when I explained to her how I was stressing out and then what Nurse Selena told me, she agreed with the Nurse. She said that in doctor's terminology, they use Palliative to distinguish treatment for stability vs treatment for a cure. (Note: once a cancer has metastasized, it is considered incurable because there are cancer cells throughout the body... but they go out of their way to try to shrink any tumors or treat them to stabilize the growth).

Anywho... it was an extremely emotional roller coaster of a week and next week I'm not sure what all is going on. I have blood work and an oncologist appt. on Monday. At the moment, I'm scheduled for IV Hydration and Magnesium + Chemo on Tuesday. The chemo may be cancelled until we know what is happening with the radiation treatments... but that consultation appt. won't be until Thursday, but the actual radiation wouldn't start until at least the next week... so it may be that I get the Chemo on the Tuesday. All I can say is thank goodness for iCal, my calendar on the computer and iPhone, otherwise, I would have no idea where I was suppose to be and when!! ;)

Soooooo... tonight I'm off to see a one man musical called FLOP! The Musical. It has gotten rave reviews and is written, composed and acted by one very talented young man. I'm looking forward to seeing what the buzz is about the show :)

Other than that, I'm having a relaxing, no commitment kind of weekend. I have a funny feeling next week is going to be busy and a bit of roller coaster ride.

Have a great weekend!!



Anonymous said...

Whew! That was a week wasn't it? I'm so sorry that you have to have the downs but the ups are good. Palliative always meant mostly, to me, stabilizing care. I agree with the Canadian vocabulary. It could be end of life but mostly stabilization. Just be the stable woman you are. All will be good. Love, Susan S. Issaquah

HunBun said...

Prayers going out for you for peace and relief from all the stress and breathing problems...

Love ya!