In Case You Were Wondering...

This post is Colleen dictating to Steve through a haze of delaudin from my hospital bed – the Banner Thunderbird hospital in Phoenix.  It may sound bad that I’m in the hospital, but I’m feeling a hundred times better and I’m really really glad to be here.  This means it may soon become a Steve only post if I fall asleep mid sentence.  Forgive the media blackout – this has been a really awful week.    A week ago Friday, I was in too much respiratory distress to go through IPT.  Instead, I went for a chest x-ray, and was put on oxygen in the appt.  Last Tuesday I had the IPT.  After treatment, I was in a lot of pain, and was referred for an EKG.    In retrospect, it is pretty amazing that the hospital did not recommend admission and further testing, considering my obvious distress.  Long story short, despite having two chest x-rays to the contrary, both my lungs have been filling with fluid over the past two weeks.  It seems amazing to me that I could have missed this.  Especially since I went through the exact same thing a couple of months back.  I think we can attribute it to wishful thinking and poor choice of diagnostic tools.  Next time, no reliance on chest x-rays – a cat scan is needed. 

I know it must have been scary for those of you following along when I started to go mute.  Trust me, it was scarier on this end.  I’d written before about the relative horribleness of pain vs. nausea.  In comparison with these, being unable to breath is in an entirely different league.  But I also did have alot of nausea (possibly triggered by the shortness of breath).  A complete loss of appetite, and, just in case you thought the universe didn’t have a sense of humor, my back decided to go out resulting in painful muscle spasms. 

Throughout all of this, I have tried to hold onto whatever small shreds of joy and humor and love I could scrape up.  Devra, Margaret and Colin won the caregiver jack-pot in being here for what I hope and pray will be the worst.  I say this because, I will never again allow myself to miss the symptoms of my lungs filling up.  I believe that it is possible to face even the most terrible things in life with peace and surrender and I continue to work towards that, but I am certainly not there yet. 

Now for some good news.  The doctors were convinced based on my symptoms that I was developing a blood clot(s) in my lungs, and this is not the case.  Although we are still going to go through a cardio work-up, and there is cause for concern about my heart with all of this, there doesn’t seem to be anything dramatically wrong there.  I could have cried with relief last evening when I realized I didn’t have to go through another night of breathlessness.  I was very worried about going through another manual drainage, but, when I told them I really wanted extra sedation, I got through it more easily than last time.  My lungs drained 450 mls from my left lung and 1350 from the right.  It is not good news that the right lung is involved, but I am not planning to panic about that (or anything else if I can help it).  My plan, at the moment, is to get out of the hospital, and continue the new chemo protocol with Euromed for at least a few more weeks so we can take a look at the lab results.  If there is evidence that the cancer is responding, we’ll stay on course.  If not, we’ll make a decision.  Meanwhile, I will probably get another blood transfusion to get my hemoglobin back up, consider a surgical intervention to hopefully stop the pleural sack of the lungs filling with fluid.

I said good-bye to Devra today, who had extended her stay to 1.5 weeks and was, along with Margaret, a godsend.  She spent an hour and a half on the phone with my insurance company doggedly working to understand and solve the authorization problems we were having.  She was a truly fantastic sister and friend even though Butters decided he liked her better than me. 

Mom arrived yesterday afternoon, and met us at the hospital.   She spent hours with me in silence handing me ice chips which were the only thing I was allowed to take in with possible surgery looming.  She will be here for at least a week.  Steve arrived this morning and is making himself useful as a scribe.  One thing few people know about Steve, is that he worked as a secretarial temp, and his top typing speed was 90 words per minute.  He was able to keep up with my delaudin-slurred dictating pace.  As you can tell, I managed to stay awake.  Thanks to everyone who is keeping up with this.