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.

Hard days and tiny needles...

It's been a hard few days but things are looking up. After a wonderful Thursday through Saturday, I felt lousy on Sunday. Even though we had a wonderful visit with the Tucson family, I had to take a nap. That evening, my lung drained 175 cc after having dipped to 25 the day before. And my platelet count dropped to 1! Plus, I am really fighting nausea. Bad to go backwards. I felt tired all day Monday and Tuesday. Despite my best intentions to stay positive, I found it hard to resist the thoughts that this was all a big exercise in wishful thinking. Of course, it might be. But it's no good to think that way. Today, I feel better, although I still drained 150 cc this evening. I had a meeting with my medical team tgus morning and they made me feel better. Wanda, the doctor in charge of the insulin chemo is convinced I will be just fine. She is unconcerned about the platelets, sure they will go back up with the help of the nupagen shots they are giving me. She sees how robust I still am and feels sure I will do well. There are a number of possible explanations for why I feel lousy. 1. I am being overtaken by the cancer and the treatment isn't working. 2. The vitamin c is making me feel lousy (this is common) 3. What I am feeling is mainly cancer die-off that makes the body feel lousy or 4. Combo of 2 and 3. They seem to think that's the most likely. The other reason for optimism is that the cancer may have stopped advancing, though it's not yet retreating visibly. I am having some pain in the affected area on my chest, which Wanda thinks is is a sign that the chemo is attacking it. I am worried that my lung continues to drain, but they say its too early to be worried. So, what we are doing to do is back off a bit on vitamin c, add an additional treatment with ozone and UVB designed to make me feel better, and go for acupuncture for the nausea and fatigue. I managed to make an appointment today for acupuncture, which I've never had. The doctor was extremely kind. I started the treatment lying down on a massage table in a gown. I always was mystified and intrigued by the idea that you could insert needles, no matter how small, without it hurting. Guess what, you can't! It doesn't hurt much, but it doesn't feel great. Each needle goes in with a tiny prick. In each area, I could feel a reaction, a slight tingling. But my right shin started to really hurt, all of it! I told the doctor, and he removed the needle, saying that, for people with a lot of nausea, this area could be very sensitive. Then he turned on a tape and left me with a nice-smelling eye pad on to meditate and listen. The woman on the tape encouraged me to focus the tones (music played on what sounded like a small gong, cymbals and harp) on various parts of my body. I don't really know what that means but I did find that, by concentrating, I could imagine the music vibrating in the skin of my abdomen, chest, face, etc. Kind of cool. After about 20 minutes, he came back in, removed some of the needles (which also hurts a tiny bit), and did some acupressure on my feet. After more listening to music, he came in and took out the rest of the needles and worked on some pressure points on my head and arms. This felt fine, but worried me a bit when it came to my left arm, where my lymph specialist tells me hard pressure is not good. Then he had me sit up and massaged my shoulders and back. He then applied glass vacuum cups to my back, which are supposed to adjust my chi, and which pinch. I am most skeptical about this process, but have decided it won't harm me and is part of the package. We'll give this process a few weeks and, if it helps, I'll continue. If not, it's another cool experience to add to the adventure. So I feel a bit better and hope we are on a slightly adjusted and better track. I said goodbye to Margaret, who is flying home for week and driving back with my Dad so she has a car to use (too young to drive a rental.) She and I had a wonderful time with my brother Colin, who's still here for a few days. I'm excited that some of my oldest friends, Kristen, Susan, Bridget and Jacqueline arrive tomorrow or the weekend. I hope I'm up to some fun stuff with them but we can all just hang out and talk if that's all I'm up for. Hooray!

Margaret/Maggie arrives out of the blue....

My platelet count dropped, so they have given me an extra injection this morning and want me on more b vitamins.  With this, plus the antibiotic they’ve added, my biggest challenge is nausea.  I am glad to have the Compazine and Zofran left over from sloan kettering. 

The big development is that Margaret is here.  She decided that she wanted to be here rather than in London doing the internship.  Yesterday, while we were at Staples faxing invoices to the insurance biller, we got a phone call from her saying “I’m at JFK and will be there at 10 tonight.”  Wow!  Fortunately, Ann and Jef (with whom she is doing the London internship,) were not only understanding, but encouraging.  Ann, with her Irish belief that too much hope tempts the Gods, thinks I am definitely dying.  Incredibly generous as always, she put Margaret on the plane.  What a friend! 

We are more positive about my expiration date, but understand how Margaret would want to spend time with me either way.  It’s not clear yet how long she will stay.  She wants to stay all summer but may change her mind if I am doing better, or being here gets too boring and depressing. She’s welcome back in London anytime.  My preference would be for her to be there (not for me, but for her), but she knows her own mind and heart and I respect that.  Plus, it’s great to have her around.  She’s a great caregiver, compassionate but calm and level-headed.  We are invited to Aunt Margaret’s for their annual Father’s Day get-together on Sunday, and it will be nice to finally get the two Margaret’s together and to meet that side of the family.

A story I keep forgetting to tell…the Whopper Junior.  The day I decided to come out here for treatment was not easy.  I knew the process of pulling together my records and sending them here would be anxiety-producing, so I asked Devra to come up and help.  She was a great comfort as we dug through all the paperwork and found the key tests and bloodwork they wanted.  I also had to write a bullet-point summary of my cancer story.  Going through all this again felt like someone had picked up a smelly, filthy lead-lined overcoat out of a dumpster and threw it over my shoulders. It brought me to my knees, with feelings of dread, rage and grief overwhelming me.  By the evening, I was in a foul and fragile mood.  All of a sudden, I announced to Steve, “I want a Whopper Junior!” (At the time, I was still on a vegan diet.)  In two minutes, he had googled the nearest Burger King.  My inner two-year-old in charge, I replied “Forget it, it won’t help.”  He, wise man, just waited.  A minute more, and I said grouchily, “Okay, let’s go.”  Driving through the dark, I just let go of any dignity or reserve and wailed. I keened in fear and rage, an inchoate protest that doesn’t hope to be heard and doesn’t care.  Finally, I took a deep breath.  Shakily, but firmly, I said “Okay.”  Pause.  “Okay.” And it was.  We got to the restaurant, Steve ran in and, in just a few minutes, I sank my teeth into burger and fries.  Heavenly. We laughed on the way home, me feeding Steve fries as he drove.  Sometimes, you just have to take a break from being good!

So treatment continues apace.  I am hearing good things about this place from people here who’ve done much more research than I did.  They seem to have a good record of success, and I am talking today to a woman who had lymphoma and was here 8 months.  She is now on follow-up and doing wonderfully.  She looks like a million bucks.  Always good to see!

Life is good...

In between surgery and radiation there is...life! I am off dairy, sugar and reined starches. Last week, Steve wanted to make a simple pasta dish with kale, onions and garlic. But I, always having to raise the bar, find a vegan recipe for creamy kale pasta sauce. Honestly, the picture looked delicious....Poor Steve! Here he was, after a long day, following my directions given from the couch. If I weren't in some kind of delusional state, I would have known that any roux made with olive oil and almond milk was a BAD idea. Then, I asked him to chop the kale in food processor and add it in, sort of boiling it. Another bad idea. Long story short, after almost an hour of work, he brought to me with the heartening comment "I don't know, Babe...". I took one bite. Disgusting! I felt terrible but, far from being angry Steve looked, well...relieved! I started laughing, really laughing hard. We both laughed harder and harder as we dumped the revolting, gluey, smelly mess into the trash. In fact, we laughed off and on for about two hours. The thought of Steve valiantly cooking away while trying not to gag and me cheerily calling out instructions....hilarious! We called both kids to tell them how ridiculous their parents are. The laughter did me far more good than that food would have, believe me. This week, Steve was traveling, so I went to stay with my parents for a few days. My wonderful Dad drive 3+ hours each way to come get me and Butters. What a great time we had. I got there on Sunday, my Mom and I walked the dog to Whole Foods and she made us salad for dinner, along with the chicken my lovely friend Priya had dropped off as we were leaving Jersey. I am so well taken care of! In two full days there, I managed to have dinner with 4 wonderful high school friends, lunch with 6 Keenan relatives, dinner with my cousin Lynn, and get a lymph drainage massage and education on lymphedema at the health building next door. My parents live in a wonderful condo right in downtown West Hartford that is just the best place to be. I'm tempted to go up there again next week when Steve's away again, but it's a schlep and I hate missing my activities here. Speaking of which, I went to my first LiveSTRONG fitness program at the YMCA. This is an awesome free 3 month program for cancer survivors to get back into shape. Most of the folks are much older than me, so I look pretty strong. It actually made me feel great. The fitness tests were pretty easy, I can stand on one leg for a minute, walk for 6 minutes, bench press a decent amount, etc. Seeing just how tough this disease and the treatment can be, I feel grateful to still be so lively and strong. In fact, I feel terrific right now, energetic and strong. I'm looking forward to really getting fit. It will be interesting to see how the radiation affects me, but at least I have a few more weeks to strengthen before then. It is odd being at the gym after my mastectomy. I don't want to bother with my fluffy, somewhat itchy fake boob, so I am simply lopsided. I simply forget this fact for most of the time, then remember and feel a bit awkward. I am finding being one-breasted harder than being bald, I'm not sure why. Maybe it is that being "disfigured" is simply more brutal. I mean, it's a form of amputation, and I think we all have a visceral response to seeing an animal of any kind missing a chunk of what we expect to see. Or maybe it's that bald is a choice men and even some women can make for fashion reasons. I don't think anyone ever cut off their boob to make a fashion statement (if someone did, please don't tell me!). I find it interesting that I am self-conscious about it. But not self-conscious enough to put in a falsie for working out, at least not now. I might later, and I do feel much more comfortable in public with both boobs in place. There is definitely something to be said for not making a statement everywhere you go. But I guess I wish it's didn't bother me at all. But who wants to look funny if you don't have to? Another issue with the falsie is that it hurts. They tell me I may heal the nerve damage that left my left arm and chest with spots that are sore to the touch, making bras, shirts or clothing of any kind irritating, but that it will take months. Fun! Anyway, I feel great and am looking forward to singing again tonight. Today is a very good day for me to be alive in. Hope yours is good, too! Colleen

Why I love my cabaret class...

Just got back from cabaret class. I am enjoying it more than ever because I now sing without fear of failure. I am just beyond worrying about sounding perfect or being judged. So my friend Jill asked if I'd try singing "I will always love you" with her as a duet. When I got up to the mike, I said I'd need some time to work on it because I don't really know the song. Our director Maria wisecracked "You've got one try, Colleen, just get it right!" so I took of my baseball cap to expose my shorn head and shouted "hey, don't you know I've got freaking cancer??? Maria shot right back "God, I'm so sick of hearing about that!", so I pulled out my fake boob and threw it at her head. God, I love that class!

Healing is for the body and the mind...

In every crappy experience, there is something to be learned. For me, the lesson is patience and the experience is recovering from surgery and chemo. I am healing well, but it sure does take time. The other thing I had to re-learn is that not all the wounds are physical. Once the surgery was behind me with no complications or problems, I expected to feel better every day. Instead, I woke up on Saturday and Sunday feeling more exhausted and lousy than before. Not only were various drugs working their ways out of my system, it finally dawned on me (maybe it was bursting into tears when I couldn't open a jar that gave me clue) that I had some emotional healing to do. All the anxiety leading up to surgery, the loss of my breast, the pain, the frustration with hospital incompetence, all of it took a piece out of me and I needed some time to grieve and to heal. It's funny but, once I knew what was going on, it got immediately easier to bear. I wasn't having a physical setback, I was just handling the emotional fallout. My psyche was drained and needed (needs) time to heal. This is still going on, but every day gets easier. As I said, my body is healing fast. I got rid of the my drains on Tuesday, 6 days after surgery. I could have gotten rid of them sooner, since the amount of liquid was below the minimum, but they weren't bothering me. And then, suddenly, they were driving me nuts. I actually think they are great technology, and pretty cool, if entirely disgusting. For anyone who hasn't had surgery, or helped a family member, the drains are catheters inside your surgical site that hang outside. The plastic bulbs at the end are compressed and exert a gentle suction that pulls blood and pus out of you. You, the lucky patient, get to empty them every morning and evening and record the amounts (so they know when to take them out.). The way I figure it, better out than in, and it meant in my case that the incision barely leaked and no bandages needed changing. Still, it's a relief not to have two orange-sized balls hanging off my left side. Back at the hospital, when we first peeked under the bandages and saw the flat area, I cried and Devra cried and hugged me. Then I had a few days to get used to that. The next step was to remove the surgical tape on my incision and get a real gander at my chest. I must tell you, no lie, it is UGLY! I mean super awful, 5 inches long with lots of little lumps and bloody yucky stuff showing between the stitches. And it's not just flat, it's concave! She took the tissue right to the bone, so there's not even any muscle there. Im going to be honest and say it grosses me out. Steve doesn't seem to mind it, he's just so delighted that it looks so healthy. The bruising is fading, as is the swelling, and it will soon be a nice, neat scar. I will get used to it. Every day, I have a set of exercises to get the range of motion back in my arm. Ouch is all I want to say about that! Yesterday and today, my wonderful Pilates instructor worked with me on the rest of my body as well as my arms. I am mainly down to ibuprofen and Tylenol for pain during the day. We just took a walk by the reservoir and I'm pretty uncomfortable from the jarring. May take some Percocet now and more at bedtime. Now, if I could just stop waking up every few hours with hot flashes..... Lol. Colleen

Pre-surgery comeback continues....

Tomorrow I am going to schedule my mastectomy. I'll see if they'll put me on the calendar for the Wednesday after the CT-scan to recheck my lungs. We can get all the pre op work done and only call a halt if they don't think the results are good enough. Since I'm no longer coughing much, and my lungs feel better, I'm confident we'll get the go ahead. I will feel better knowing there is a date in place. For the rest, I feel in limbo. As I wait for my lungs and the rest of me to heal from the chemo, I am in a self-imposed semi-quarantine. I am basically home-bound and restricting visitors. This is hard to do without becoming stir crazy and depressed. I do go out twice a week to a private Pilates session that is helping get me back in shape. And I do coach clients and attend meetings by phone. There is email, texting, Facebook and phone calls, all of which keep me connected. A nd there is Butters, who is never far from my lap (even in the bathroom!) The great news is that I am healing! M hemoglobin count is on the way up, along with other important blood levels. The fog of fatigue is lifting and I am feeling restless and bored. I am walking at least once a day and running (very) short distances to get my heart rate up. This is impressively awful, with me literally gasping for air after a moderate jog of 50 feet or so! But the trend is positive. And my hair is growing back. It is happening in a weird way, coming in faster on the sides and back (male pattern baldness...VERY attractive!) and far more gray than before. I've been coloring my hair for a long time and can't be sure, but it seems there is more white sprouting than my roots would have promised. The other odd thing is the texture, fine like baby hair. I hear it may come in and be gradually replaced by normal hair. Have to say I hope so! I think my eyebrows are coming back, but the evidence for eyelashes is awfully close to wishful thinking at this point. I wish I didn't care. It would be nice to report that vanity had given way to a deeper and more spiritual view of myself. Well, sort of, maybe. I mean, in the end, we still live in the world in which we are attracted or not to each other based on physical attributes. Beautiful people make more money, get the interesting jobs, and on and on. So its hard not to be bummed to find myself emerging from this chemo significantly lower down on the pecking order. I am fatter due to the keep-your-stomach-full-to-avoid nausea plus no energy to move around effect. To also be grayer, possibly lashless, not to mention one-breasted. Well, it's no fun, that's all. Worth it, definitely, but no fun. So what kind of meaning can I create from it? What would I gain along with the freedom to stop caring how I stack up a bit earlier than I had hoped? It used to be that youth was not the only thing worth having, when middle age meant an increase in a different kind of status. Now we want to be sexy until we die, and we pursue that dream through plastic surgery, diet and exercise, makeup and hair dye. Big effort, isn't it? And, in the end, a losing battle. So here's the thought... I embrace strength, fitness and health, do what I can to dress up the exterior without extravagant effort and decide to love the result. Decide to own my middle-agedness with humor and as much grace as I can muster. God, I hate the idea. I resist it, feel ashamed at the loss of status and power it implies. So I have internalized the cultural devaluation of older women, at least those who are neither thin no youthful-looking. Ugh! On the other hand, I'm not naive enough to think I create my own rules, that being comfortable in my own skin means I won't pay a price with others. Fatter and older is not better in our world. Worth thinking about further. Another exception to my isolation are rehearsals for a cabaret performance May 2. To give that up seems too high a price. So I went last week. The lack of breath is a challenge, and I have lost some range and transitions between chest and head are rough. But the voice is still sound and will come back. To be there again singing is balm to my soul and a promise of a future beyond sickness. On a final note, Steve and I just took the dog to the reservoir and walked a good 2 miles! I am tired, but did manage a short sprint at the end before my knee complained too much. Running is not a good form of exercise for me but I am coming back! Surgery and radiation still too come, but I am hopeful the worst of this is behind me.

Fear of the BOOK

Looks like I struck a nerve by threatening to write my “21 Stupid Things To Say to People in Trouble” book in my first post.  Of course, this book is likely to be a best-seller, so I am going to have to write it.  A friend who has two kids with special needs is collaborating with me…her contributions really add spice.  You'd be amazed....We fantasized about leaving the book lying about in conspicuous places when certain people come by, dropping it on people’s porches, etc.  In fact, we nearly peed ourselves swapping hurtful stories, transmuting them into something that feeds our feistiness and feelings of superiority. Hey, you wanna criticize me?  I've got CANCER, remember? (God, being able to play that high horse card is doing me SOME GOOD these days!) 

But, really, really, really, you need to know that the only really bad thing you can say is NOTHING.  The cruelest and stupidest response we have when someone is hurting or sick is to run away, using “I didn’t know what to say…” as an excuse for cutting and running. When it comes to sheer hurt, abandonment leaves implying that the disease might be your fault (see The Secret), or that things are worse than they seem (or better than you seem to think they are) in the dust. 

So, please, screw up, faux-pas and stumble away - just promise to stick with me.  The number and strength of a patient’s relationships correlates with better treatment outcomes.  By just being here, you may actually be saving my life.  Here, at the the center of an incredible web of support, love and good-wishes that extends, literally, around the globe, I am strong. 

And, if you end up in my book anyway, just know I’ll definitely change your name!

Yours,  Colleen