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.

Catheters, sightseeing and friends and family...the bad and the good together

As I lie here writing this, I am deciding whether to have the pleural catheter removed from my lungs, even though it is still draining. At this point, the pain where the catheter emerges from my chest is the biggest problem I'm facing. It keeps me from exercising, or even walking, swimming or stretching. Unfortunately, we thought we were close to getting it out because I was draining far less from it. But this morning, it was suddenly 100 ml again. This isn't a ton of fluid, but it's in the wrong direction. The risk if I have them take it out is that the lung will fill up and need to be drained again. Worse, they could want to put a catheter back in. That's a tough thought to face. But I am starting to fear that this thing is a big obstacle to my getting better. Lying about is not healthy for me. Beyond this, it's been a nice few days. My friend Jacqueline arrived Wednesday evening and she and I had a great dinner out. On Thursday, I had chemo and then Steve drove us an our north to Montezuma's Table National Monument. This is the site of ancient cliff dwelling, something I've always wanted to see. It was incredibly hot, but we walked slowly around the 1/3 mile circuit, resting in the shade. Very cool. After a great lunch in a hole-in-the-wall Mexican place Jackie found with Siri, we drove to Montezuma's Well, an almost circular pond around which the same people lived about 700 years ago. I felt well enough to climb all the way down and back up. I took pain meds for the ride home. After dinner, Jackie and I went to Applebee's for karaoke. I sang twice. I was super flattered when the DJ clearly enjoyed and complimented me on my songs. It was Jackie's suggestion that I sing "over the rainbow" and there was a big round of applause afterwards (most of the singers were pretty roundly ignored)' so that made my night. Today, we drove 2 hours to Tucson and had lunch with Steve's aunt Margaret, her husband John and daughter Lynn, neither of whom I'd met. It was a lovely time. Butters was a perfect gentleman. I feel a bit better, so going to go out and walk around the pool in the warm night air.

First day of treatment

First day of treatment. The place is 5 minutes from our hotel and we arrived at 8:30 a.m. I was able to eat at 5 but fasting since then. Hungry! We were welcomed by Janice, one of the many warm, relaxed and cheerful people we met there. I filled out paperwork, including a 14-page medical history. One thing you notice about allopathic or wholistic providers is that they care about a lot more things. They want details on what you eat, how much you exercise, sleep, tons of symptoms other providers don't ask about. It's a pain, but does make you feel looked after at a whole new level. We then met with Dr. Deane, the director who admitted me, and Dr. Zieve, who will take care of me. Anyone interested can read his book, Healthy Medicine. One jarring question was "why did they do the mastectomy?" If the cancer is already beyond the breast, then a mastectomy is not indicated, apparently. Our answer was that they thought it important to remove the initial tumor. They said nothing, but its apparent from the result, that I would have been better off without the surgery. Grrr! it was reassuring to once again hear Dr. Deane say that they have had "good success" with triple negative breast cancer. Glad to hear someone has! Anyway, after paying by credit card for a week of treatment (some, but not much of which will be reimbursed through insurance), I spent a few moments envisioning our retirement spent working at Wal-Mart and living in a trailer park, then focused back on the idea of living to retire at all! My main treatment today was IPT, the insulin-potentiated chemotherapy. I was worried about this and made Steve stay, but it was easy. they accessed my new port (still sore and not psyched about being stuck with a needle, but oh well), took some blood, gave me saline and then delivered the insulin. Shortly after this, which left an odd taste in my mouth and made my heart race slightly, she gave me the chemo. they are able to deliver a cocktail of 5-6 chemo drugs that they find work well in synergy. You can't do this with normal chemo, as it will kill you dead. Then i could eat. Yay!!! they followed this up with oral supplements (broccoli extract was one!) and the "pink bag" of IV vitamins and minerals and I was done. We were there from 8:30 to 1:30 all told. I feel good, my lung drained only another 50 ML today, and, provided this stupid rash goes away and the catheter entrance heals up, i should be able to soon stop moving around like an old woman, slightly hunched over to not pull on the tubing, and slowly, not to jar my poor, sore side. For someone who walks fast as a matter of personality, this has been a drag. We went out to Wal-Mart to buy hats (we have a magnificent collection of hats at home that are, alas, at home, and various household things you need when you move via airplane and don't want to lug around, say, dishwasher detergent. On the way out, Steve encouraged me to get the pedicure I was coveting. I had removed the polish and, in a fit of detox-thinking, resolved to leave them plain. Alas, the chemo has damaged the nails, so they were discolored and yucky. I found it depressing looking at my feet. So now, I am sipping a very tiny glass of wine and admiring my hot pink toenails. A very lively color, a spunky color, a color for a woman who plans to live a Hell of a long time. Steve said he loves them, that they are a sign that we just left the bottom behind and are on our way up!

Some days...you could skip

I am sitting, once again, in a hospital room at Sloan Kettering. I did not expect to be here. Somehow, I missed two key pieces of information about this procedure to get a catheter into my lung. First, I didn't know it required staying overnight. Second, they didn't tell me they were also going to replace my medi-port. Both surprises this morning. The medi-port discussion was very unsettling. Basically, the doctor was appalled at the placement of the port, said he didn't believe it was ever in the right place (instead of the migration story we were told. ). Furthermore, he said it was in a terribly dangerous location, that it could easily have shut down all the veins in my neck area, causing my head to blow up like a balloon. It was clear that he was angry this hadn't been addressed much earlier. In the past two days, I had actually been feeling some pains in my neck veins. Probably unrelated, but I sure wasn't going to say no to this. So, to back up a bit, Mom and I took a bus into the city yesterday evening. She babied me by getting chinese takeout, which we ate on my bed in the hotel room. That was fun, though I should have eaten more. I've done this no-food-or-drink-after-midnight shtick a lot lately. But this time was the worst. I woke up starving at 6 am and feeling really crappy and stayed that way. It took hours to get things underway and I think they wheeled me off to surgery at 10. Nothing for 12 hours, and I really felt miserable. I don't know why, but the drug cocktail for this procedure was not the lovely, blank, can't even remember what happened variety. I was woozy but awake as they stuck me, pushed things into me, etc. Nothing was excruciating, but all of it hurt. I counted at least 4 injections of local an aesthetic, and I heard every word the surgeon said as he told someone what he was doing to me. It seemed to last forever, but was about an hour. When they were done with me, the pain started as my lung began to expand into the space left by the fluid. The last straw was a chest X-ray, sitting up for which caused spasms of pain in my back left lung. As they wheeled me into the recovery room, I was sobbing through the corridors. I just gave up and let myself cry. A group of young workers were goofing off, a young guy singing "13 candles" and I came close to shrieking at them to shut up as I rolled by. Too awful. By the time I got there, they were obviously concerned to get me some pain meds! But I decided against the IV dilaudid. I knew they wouldn't let me eat if I took that, and that seemed intolerable. Bad call, since they didn't manage to get me even juice and crackers until hours later. Once I had eaten, they decided to give me fentanyl by IV for pain. Whoa! I started to feel the med and my pulse and blood pressure dropped. I was dizzy, nauseous, losing it. I'm amazed by how utterly deadpan both the nurse and doc in managed to remain, as they increased my fluids, lowered my head and discussed giving me a stimulant. All the time, the phrase "oops. I think we just killed the patient" was going through my head in a kind of loopy way. My poor mom, watching my lips get white, hearing all of this, knowing, as I did that this was NOT GOOD, rubbed my hands and went along with the pretending this is not a crisis script we were all following. Anyway, the fluid did the trick and I stabilized. And it did stop the pain for a bit! They first thought it was an allergy, but saw I'd had the same drug during surgery and decided finally it was probably dehydration. After all, I'd had nothing my mouth in 14 hours and had fluid drained from my lung. Just when I was starting to think something was wrong, the pain suddenly got more manageable, I felt able to sit up, and mom brought me real food. But the next blow was when the person in charge of the drain showed up and told us they couldn't train me how to use it until tomorrow. Also, that the visiting nurse would have to come to the house for a few days afterwards. And all I could think was that Steve and I planned to leave for Phoenix tomorrow morning. Not going to happen. I do not want to delay starting treatment out there, but may be forced to let it slip by a day. Nothing to be done about that right now. I wish I has listened to Steve when he suggested doing this first might create a big delay. But I am glad to have the port fixed. So Mom was finally able to leave for a much-needed nap. They found me a room at 4 pm and wheeled me up here. The sun is streaming through the window and Dev just walked in. Things are looking up!

Home sweet home....Quick update

I am home from the hospital. Hooray! It wasn't bad, actually. The staff at Overlook in Summit were wonderful. Even the folks cleaning the floors made it a point to be friendly and kind. But after three nights, I'm relieved to be home. Change of treatment plan. I am not yet sure if the fluid in my lungs has cancer in it, but I am assuming so at this point. Because of this, and due to the cancer in the skin around the incision, I will be put back onto IV chemo starting Wednesday. Not the same drugs as last time (more info on that soon). Not good. May consider a clinical trial. Butters refused to look at me when I got home. I let him out of his crate and he grabbed his toy and went the other side of the coffee table to chew on it. He only came over to see me when I called him. Resentment seems a pretty sophisticated emotion for a dog, but it was clear he wasn't pleased with me. I have now been fully forgiven and her is following me about. What a bummer for him to have me simply disappear for almost 4 days! The other thing worth noting is that my chest X-ray this afternoon was clear - no fluid building back up. It's still hurts to take a deep breath as the lungs unsquash themselves, but there is no longer a stabbing, impossibly painful spasm when I inhale quickly. This had made laughing, crying or any sudden movement very scary. Glad that's over! I do cough when I take a deep breath, but it's getting better quickly. At the moment, I am feeling good, with almost no pain, no nausea, and a good end-of-day tiredness. This, I appreciate!

Breathing is a beautiful thing...

Great truth for the day: life is easier without two liters of fluid in one of your lungs. That said, it's not so hot to get the fluid out of there. The first try was yesterday morning. It sounded easy enough, a simple procedure to do right in the room. A little local anesthetic, a needle inserted into the lung through the ribs (ugh) slide in the catheter and drain the fluid into bottles. I sat on the bed and leaned my arms onto the tray table. The local injection hurt, but it seemed okay. I felt reasonably calm and looking forward to getting it over with. All of a sudden, I felt lightheaded. I tried to ignore it, but it got worse and worse. I had to fess up and they helped me lie over onto my side. I felt terrible, but better with my legs up. I lay there giving myself a pep talk to get this over with, slowly sat up again, and the doctor reinserted the needle. Instant blackout reaction. I was sweating, leaning over the tray table and praying to make it just the few more moments needed to get the catheter in and draining. I couldn't do it. I was shaking, crying, and almost unconscious. They lay me down on the bed, making apologies and telling me this happens, I shouldn't feel bad, etc. As if my biggest worry was whose fault it was, rather than that I'd just gone through Hell and still had all this crap in my lung! They were able to get enough fluid to send out a sample for testing. Choices of why this happened include cancer in the lung (bad, bad, bad), infection (unlikely), and injury. Not worrying about it. Results in a day or two. It took a long time to sort out plan B but they finally told me I'd have it done the next morning under sedation. Although this meant no food or drink after midnight, I was thrilled at the idea of being under during the drainage. I slept well. This morning they came to get me at 8:30 and wheeled me down to cat scan. I lay there for awhile on a stretcher until the nurse came and described the procedure. As I listened, I realized she hadn't mentioned any sedation and asked. When she said no, an "Oh no!" burst out of me, in a voice obviously fighting tears. How embarrassing. But how crushing, not only the thought of the whole nasty thing, but what if I fainted again? Karen was very reassuring, putting on a blood pressure cuff and telling me she would get me through it. I had to lie on my side and get a cat scan first. To give you an idea of the state of things (me), they wouldn't let me get up or help myself onto the table. They just slid me around on a board like a big sack of meat. Okay, so here we were again. Not to whine or anything, but I wish they'd give you pain meds for the damn numbing injections. It hurt, and it burned, and I've just had about freaking enough of this crap, okay? But I have to say, he worked quickly and well and the catheter was in very quickly and, hallelujah, we were draining! Then Karen told me that I might start coughing when the fluid drained and the lung started to expand. Thank God for the warning. Lying on my side immobilized, I coughed, coughed again, and then again. And I was coughing hard, unable to catch my breath, fighting panic. "Breathe out like you're putting out a candle" and I was brought back to LaMaze class as I puffed away, squeezed Karen's fingers, gasping, whimpering, trying not to panic. Somehow, I got through it and we we done. Two freaking liters of fluid in one lung. The fluid builds up between the pleural sac that encases the lung and the airways. My poor little airways, squashed in by all that water, we're basically collapsed. Lying there, every breath hurting and feeling pain I my shoulder, hip, back, it was easy to think something had gone wrong. But, as soon as I could stand it, they shoved me back into the scanner and announced that all was well. The lung reinflated fully, my cheeks looked pinker. Success! Getting the lung back to normal ain't going to be a picnic. Good news is there is no pain when i breathe normally. But every deep breath hurts a lot. And, a sharp intake of breath to laugh, cry or just move quickly creates an unbearable spasm. So I am on Percocet to take the edge off and instructed to use the incentive spirometer to stretch the lung tissue back out. As I write this, I am sitting up in a chair and feeling quite good. I can walk around my room and no longer have to cough every time I say more than 10 words in a row. The pain when I breathe in is getting better. Home tomorrow! Despite the lousy news, I am cheerful, even joyful. For the first time in my life, I feel fully justified in living one day at a time. Doing my best not to worry but to work hard at getting better, staying a step ahead of the cancer, hoping for extremely good luck and loving being alive. Time flies...off to my breathing exercises!

Hazy lungs and other weirdnesses...

Yesterday I trekked into the city to see the Sloan Kettering pulmonologist. They fit me in with an urgent appointment, which is a good thing and not-so-good, of course. The issue is this lung thing I have going on. My oncologist had prescribed prednisone and two antibiotics, which I'd been on for seven days. Three days ago, still on both, I suddenly got incredibly nauseous and started throwing up like crazy. I don't think I ever managed to vomit that much and, coupled with the diarrhea that had started with the antibiotics, all the progress I was making seemed to grind to a halt. I felt like hell and stopped the antibiotics while waiting to come in. The pulmonary area of Sloan Kettering is a scary place. People there are coping with very bad stuff. One imagines its either lung cancer or some other cancer coupled with something great like emphysema or copd. I was the youngest patient there by about 20 years from the looks of it. A fair number of breathing machines. Not a lot of smiles. I have to say it was pretty efficient. Lots of forms to fill out that were very brief if you don't smoke. Basically, if you don't smoke, you can skip most of the questions. So, if you don't believe smoking is really, really, really addictive, try to imagine sitting there in that terrifying place, with all that money being thrown at your condition and all sorts of nasty tests and treatments facing you, not to mention your very likely death, and still having to write on the forms that you smoke. What goes on in your mind? Denial? Despair? Self-loathing? Anger? It's hard enough to go through this without the pretty certain knowledge that you brought it on yourself. As a friendly hint, never let anyone talk you into a nasal swab just for the fun of it. To rule out infections of various sorts, they stick very long q-tip thingies WAAAY up each nostril for what seems like much longer than a few seconds. I love the way they say it will be "uncomfortable." I don't know about you but, to me, uncomfortable is like an itchy shirt, or a sofa with broken springs. Not that I recommend them saying "now this is going to hurt like hell..." but it's funny how we just accept code words for things. A little conspiracy of denial. The nurse was quite sympathetic and apologized, which does help, somehow. If you know you have to get one of these in advance, take Tylenol before you go! The doctor described what they are seeing in my lungs as a " diffuse haziness." If it were pneumonia, they'd expect to see it in one place, but they can't rule out some rare types. One of the first chemo drugs I was on, adriomycin, can also cause congestive heart failure, which this could also be (oh, great!) but seems that I don't have many of the other symptoms. So the working hypothesis remains that the Taxol has caused inflammation in my lungs. Treatment is continued prednisone. I didn't realize that this depresses immune function, which is why they also want me on a very expensive (as in $1,000 a month) antibiotic called Atovaquone, used for HIV and organ donor patients to avoid a lovely fungal pneumonia. Side effects of the drug, other than bankruptcy, are nausea/ vomiting, diarrhea, etc. Sounds like a great way to get strong and fight cancer, huh? The pulmonary function test was pretty interesting, though. They have you sit in a glass phone booth-like enclosure, put your lips around a plastic thingie and bite down on it. Then they clip your nose shut and tell you what's going to happen. There were three tests. The first was to take a deep breath and blow out as hard, fast and long as you can. The technician is your cheerleader, urging you on "Great, great, keep going, more, more." phew! Exhausting and made me light-headed. It's a little hard not to feel a bit panicky with this thing in your mouth and your nose shut. I am grateful, as always, for my practice at relaxation techniques. The second test is to take short little breaths, which they then block off, so you are sucking away with no air coming in. Suffice it to say that the body doesn't care for this and you are very glad its only a few seconds. I can't imagine what it would be like to have truly damaged lungs, or an anxiety disorder and go through this, even though it isn't painful. I did very well on the first two tests, which check your airways. I scored even higher than expected in one. The third involves breathing in from one bag, holding your breath and breathing out into another. It checks how well the membranes that transports gasses to and from the lungs to the bloodstream are working. Apparently, disease or some meds can thicken the membranes. Yuck! They look at oxygen, carbon monoxide and helium. 80% or above is normal range, I was 78. So it seems my lung are getting enough air but not getting it into my blood well enough. The technician seemed to think the chemo also the most likely cause. So we are now looking at a delay of at least another month before surgery. Aside from putting off getting my life back, it makes me worry about the cancer. The purpose of the surgery is to remove tissue that may still be cancerous (in one of the sweet ironies of life, we won't know this until it is removed and checked.) If it is, then getting it the hell out seems like a good thing to do, and not something to delay. If not, then having more time to recover before surgery is a good thing. Of course, having general anesthesia while your lungs are broken is just plain dumb, which is what they are worried about. What a mess! The good news is that I am feeling better today. My lungs still feel tight and heavy and I cough when I talk too much, but I am more energetic. I plan to take as much vitamin c and niacin as I can tolerate and get under the uv light for vitamin d and drink lots of fluid to recover from and prepare for the antibiotic effects. In many ways, the hardest part of my current treatment plan is the isolation. Interestingly, the doctors do not recommend staying away from people and crowded places. They agree its good idea, but they don't tell you to do it. In fact, they think nothing of sending you into hospitals and their offices, which are crawling with sick people. It's as if they don't even consider it possible to avoid exposure. It's not in their model, and not in theiinterstate to think they could be part of the problem. So this I've had to impose on myself, which doesn't make it easier. At a time when I am most lonely and in need of people, I am cut off. Thank God for the Internet, email, phone and texting. But I miss being out in the world, shopping, literally seeing people, getting hugs (anyone who does visit has a strictly hands-off policy.) Butters is some help...he is the world's cuddliest dog and I can feel the oxytocin flood my system when I pet him. Of course, he also has dog breath, licks my face and tries to steal whatever I am eating. But you can't have everything! And there is Steve, of course, my valiant and hard-working guy, tortured by his worry that the course of treatment I am pursuing may be harming more than its helping, being supportive while still offering alternatives. It doesn't make it easier in the short run, but may well save me. Hard to know what to do in the face of something this awful and that has not, frankly, been one of the great successes of modern medicine. So we muddle along, doing the best we can with the information we can get, hoping for the best, enjoying what we can. Sounds a lot like life!