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!

Moving to the desert...

Two weeks ago, I got the bad news. Not to put too fine a point on it, but the treatment has failed. The cancer, possibly in reaction to surgery, has exploded back into the skin, my lymph system and my lung. The news actually came on slowly enough, and I am aware enough of the implications of various things, to not have been shocked. I could see that the scar was not healing, seemed to be getting worse. I could feel the effect in my lung. bBut there's nothing like that old 2x4 between the eyes.... So what do you do? It's interesting how the mind takes in bad news, in a step-wise fashion, forward and back, acceptance and denial and distraction as it creeps up on you that things have changed. And I did despair. I found myself overwhelmed by grief and anger and terrible fear. It's been a very hard few weeks. But I have decided not to throw in the towel quite yet. A friend recommended an alternative treatment center in Arizona and I looked into it. I have to be honest and say that an extensive due diligence is more than I can take right now. I like their general approach, which is to attack the tumor through low-dose chemo potentiated by insulin. It's an FDA-approved, though still controversial (what isn't?) approach to try to target the cancer with chemo. It allows you to have less chemo, so the rest of the body says stronger. More importantly, they treat the immune system through IV vitamin c, detoxification, other vitamins, etc. They hope to help your own immune system fight the cancer, rather than just directly attacking it with surgery, radiation and drugs. The odds against me are long either way. With the traditional approach, I'm guaranteed a lot of discomfort and no cure. My hope is that this will offer a higher quality of life and perhaps even allow me to get into and maintain a true remission. So I am in the process of doing paperwork, making phone calls, packing and moving my life to the desert for at least a month or two. I plan to continue coaching and staying in touch with everyone. But, if you happen to be out west and want to come visit, I would love that!!! I'll post when I have dates.

Chemo again...

A brief update. I am in day 4 of chemo and the steroids wear off. Feeling it. I am scheduled to have a catheter inserted into my left lung that will drain for up to a month. This seems wise to take pressure off my system. Other than this, I am putting into motion an alternative treatment option that appears to offer more hope and less suffering. More on that as it emerges, but I am feeling good about it, as are the members of my most immediate team (or they are pretending to, which will do!) I have decided against pursuing a clinical trial of any kind (not that it's been suggested yet.). I don't want to be that much of a guinea pig (we are all part of a big experiment here, anyway.) Anyway, Butters is where he needs to be (my lap), I'm in almost no pain and nausea is at bay. I can write, read, watch movies and move around the house a bit. Not bad. Hard to believe this is helping me heal in any meaningful or lasting way. That's why I'm willing to try something new. Onward! Have a great holiday if I don't write again before then.

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!

Crappy news....and on we go

Yes, I know how long it's been. I've been quiet because the news is scary. The PET scan showed activity not just in the lymph nodes on the left, but on the right. Screeching halt to radiation plan, needle biopsy last week. Results came in yesterday. As I expected, they were bad. The cancer has recurred already. In fact, after my visit with the surgeon, it appears that the mastectomy may have caused the cancer in the skin to "explode." The red area around my scar is probably tumor. You don't need to be told how bad this is, so I won't bother saying it. The plan is a gentler form of chemo, taken orally, called xeloda. They are no longer trying to cure the cancer, just to keep it under control. With luck, I am joining the ranks of people who survive for years in that state. I'm doing a great job of not worrying because, guess what? It doesn't help! Each day is a day I'm alive in. I wrote last before the cabaret, which was a big success. It was huge fun to have my parents, in-laws, and good friends in the audience. I sang well and had a great time. There were a few moments when I felt this cancer journey had landed me in a brand-new place. I was onstage with no fear at all, 100% focused on delivering the message of the song and creating beauty with no distraction of the "how'm I doing, how'm I doing?" variety. It was a gift. The more dramatic news is that I am in the hospital at the moment. My lungs have been feeling lousy for a while, despite no activity on most recent pet scan. Over the past few days, the shortness of breath got markedly worse. I was not just sucking wind after climbing stairs, but while talking! My oncologist could not hear air moving in the left lung. Not good. It was too late in the day for me to get a chest X-ray at Sloan, so she admitted me to overlook hospital for a ct scan. Wonderful Devra, who came with me to the doctor, drove me here and waited until Steve arrived. My scan was done last night around 10 and showed significant fluid in the left lung, but no clots or apparent pneumonia. Today, the lung specialist will either aspirate the fluid or continue the diuretics they started me on last night. I am on no food past midnight in case they aspirate (long needle stuck into lung through your back sounds fun, but I would welcome the instant relief it gives.). This means I am starving, with no idea how long until I can eat! I slept about 3 hours, but it was good sleep. Pain is manageable with Tylenol. I peed a ton from the diuretics and feel that I'm breathing easier. Apparently, they will do a chest X-ray this morning. Of course, I know this could be cancer in the lung, but I have decided not to worry about that. How would that help? So, I'm eating vegan and low-protein to give my body every advantage in slowing the growth of this fellow traveler. Once i can breathe again, I'll continue working out to get back into shape. Despite the lousy news, I am finding more strength every day not to make my life about dreading what might happen. If I am on borrowed time, tell me who isn't? So please don't worry about me. I'm not done fighting, and I'm still here, and planning on keeping it that way!

It just gets weirder and weirder...

So, that was a truly weird experience. On Tuesday, they prepped me for radiation, which I start on the 14th with a trial run then the real deal the following day (and all 28 working days after that, six weeks in all. My simulation included blood work and PET scan as well. The day started with nothing to eat after 7 am, water only. Not bad, since breakfast and coffee can still be had earlier! For the blooded work, they agreed to access my port. Probably not a great idea, since it hurts more than the arm if you don't use the numbing cream ahead, which I didn't think to do. No matter, since it didn't work. And it really does hurt to have someone jab a needle into your chest. And it is a jab. The compensation is that it always works, except when it doesn't. You might remember the crazy moving port story, when the other end of the port eased its way out of the jugular, up my chest and over the a vein in the other side. Then, when we had the delay between chemo and surgery, I forgot to get the port flushed. S, at my last oncologist visit, the nurse tried it and, after a disappointing moment f no blood return, I raised my arm and it worked. Seemed like a triumph, except it was just an unnecessary pain, since we still can't use it. So now came one of those difficult moments. I had to decide whether to let her try again. Now, you would think, after all I've been through, this would be a no-brainer, a minor amount of pain, no biggie. But I hesitated. Another stick right in the same spot, and unlikely to work. The nurse was all sympathy, confessed she hates needles, and offered to see if they would agree upstairs to collect the samples when putting in my IV (can't use port for pet scans.). But I wanted to see if we could get the port working again, do I gritted my teeth and told her to go ahead. Another puncture (ow) and no blood return. Damn! Ah, well....now I'll have to decide whether to go in for a port flushing procedure. This is all in aid of a possible need for more chemo after a recurrence that no one wants to exactly talk about, (but is statistically quite likely.) Who wants to even go there? After this fun experience, I headed upstairs for the PET prep in the now familiar little room. IV went in fine, they took the blood sample, and I started to drink the yummy red radioactive glucose drink. They showed me the extra blankets and, after they left, I wrapped up in three of them, made a fourth into a pillow for my iPad, pulled the other chair up for me feet and watched reruns of law and order criminal intent for an hour. Very cozy. Finally I went into the scan room, where they also make the mold for radiation. Obviously, they don't want to zap you willy nilly, so a mold of your body is made to lie in during treatment. They mixed two chemicals and poured them into big plastic bag, and then smoothed the mixture all through the bag by squashing and smoothing it on the counter. It was such a physical process, like rolling out bread dough, and they talked themselves through getting it just right. I was surprised by how unmechanized it was. I thought the same thing as they lay me on the scanner table on top of the bag. With one of them in each side, tucking the mold around me and taping it to my skin, shifting me back and forth and debating whether they were within the scanner boundaries, I felt like a chicken being prepared for cooking by two highly skilled chefs working on a dish that still required discretion and discussion to get just right. This impression was heightened when the doctor arrived and discussed the exact placement of the field. Apparently, there are options. Physics was to arrive in a bit to also help with this. I know enough about quality systems in healthcare and how important these kind of procedures, open discussion and debate help prevent dreadful mistakes. I am very reassured whenever I encounter a checklist, safety, or privacy procedure (they have achieved 100% compliance with staff asking you to spell your name and give date of birth before talking to you, for example.). But I have to admit that some small and scared part of me misses the authoritative, doctor-as-god approach. I'd never go back to that and its terrible risks, but it is scary to lie there while a part of your brain listens to the discussion and wants to ask " wait a minute...don't you KNOW the right way to treat me???". They are doing the right thing, but it's creepy to be reminded that this can still be messed up. Anyway, trussed up like a chicken and unable to move, I waited for the mold to harden, the doctor and techs making marks on my chest in pen, and placing sticky numbered wires to my chest. Then, finally, the scan. 24 minutes of sliding my head and lower chest in and out of the tube. I relax and think of myself as falling through the universe, strapped to this machine, pinned the earth by gravity and we all hurtle through space. It was entertaining, and helped the time pass quickly. Just when i thought it was over, she announced, "I'm going to have to stick you in four places." Oh, Great! How anyone chooses to get a tattoo is beyond me. Four simple dots, three in the torso and one in my head. Four needle jabs that felt deep and painful. And people sign up to get an entire dragon? Now, we wait for the results that tell me if cancer can be seen in the neck lymph nodes. Worry waits for me at every corner, but I am getting better at slipping out of his clutches and moving on. Meanwhile, I continue to heal from surgery and chemo. The skin around my scar is still red, numb in spots and hypersensitive in others and adhered to the scar tissue under it where the muscle was carved away. I can massage it very gently to stretch the adhesions so the skin moves normally. This doesn't hurt, it's just boring and slightly creepy. I have almost achieved full range of motion in my arm, although there is stiffness at the far end of the range in many directions. My toes are still slightly tingly and my legs ache sometimes when I walk. I am still breathless when I climb stairs, but I recover quickly. I can work almost a full day, and I feel cheerful and energetic much of the time. When I go to the LiveSTRONG class at the y, it's clear I am doing extremely well compared to others (and these are the people able to at least come to the gym....not the worst off cases.) My family continues to be wonderful. My parents have made the 3+ hour drive from Connecticut countless times, made soup and other food, my Mom has come to doctor visits, and they've even paid for many little things along the way. More than this, they have managed to remain reasonably calm and rational in the face of a terror and suffering only a parent can understand. Thank you, Mom and Dad! My sister Devra has been my mainstay. We have grown even closer with this and I don't know how I'd have done this without her to talk to. I really do have the best sister in the world! My kids have done as I asked and gone about their college lives with a clear intention to do their best. Both have stayed cheerful and unafraid, loving, sympathetic and humorous. Margaret in particular has been a great source of love and strength. Amazingly mature and incredibly kind, she texts and calls regularly and always brings sunshine with her. And then there is Steve. I can't really recommend cancer as a strategy to re-bond with your spouse when the kids move out (too many downsides!) but it worked for us. Not that we were in trouble, but we are now closer than we've been in many years. It's not easy on either of us that he's so interested in health. He's not always in agreement with my doctors. Although he feels strongly all decisions are mine to make and his to support, I take his opinions seriously. We decided early on not to have him attend any more doctor visits, because it made both of us crazy. But he has spent countless hours on the Internet, reading and talking with me to help me make good decisions. Exhausting for both of us, but may well save my life! All the debate and the unwillingness to simply follow "expert" advice has definitely increased my stress levels at times. But it may also have saved my life. The vitamins, sun exposure, the exercise, the diet changes, all both increase my odds of surviving, and make the short-term effects less devastating. Steve has decided I will be fine. He just believes I'm going to be okay. Sometimes, this is irritating, because I get freaked out and want him to be, too. Except, of course, I don't want that at all! I asked him at the beginning to be positive, and he has done so. He simply can't stop seeing me as basically very powerful and competent no matter what. This can tick me off when I want to be coddled and really need to be pushed. But his belief in my underlying strength has been a great gift to me. This is no time to think like a victim, and I'm glad I chose a husband who basically doesn't think I need protection., even when I need support. Don't get me wrong; Steve has waited on me hand and foot, cooking all the meals, walking the dog, shopping, cleaning, you name it. He just quietly does what needs to be done, while encouraging any efforts I make to do for myself. This is exactly what I need. Most importantly, he has learned to just hold me when I cry, or to,listen when I rail against the struggle. He doesn't judge or try to cheer me up, knowing the storm will pass, that I need to feel the grief and rage. And then he repeats "You'll be fine, Babe." and I will be.