Funeral Service

A service for Colleen Vera Keenan will be held at Stanley Congregational Church on Saturday August 11th at 1:00 pm. It will be an hour-long service followed by a light lunch during which memories and stories can be shared. The church is located on 94 Fairmount Avenue, Chatham NJ 07928. In lieu of Flowers, please write checks In Memory of Colleen V. Keenan to:

AHM Chrildren's Trust Fund
In Memory of Colleen V. Keenan
AHM Youth and Family Services

25 Pendleton Drive
Hebron CT 06248-1525

and/or

Hunterdon County YMCA
144 W. Woodschurch Rd.
Flemington, NJ 08822

On to the Next Adventure

It is unlike my mom to leave without a final word. She had plans to dictate a final blog post and never got the chance. So I will do it for her.

Yesterday morning the doctors told us there wasn’t much more they could do to save Colleen. Her lungs were quickly refilling with fluid despite the operation she had on Sunday. We believe the procedure gave her a few extra days however, and we are very grateful for that.

My dad picked me up from the Sage apartment and brought me to the hospital around 11 a.m. I can tell you one thing for sure, my mom was not about to give up. When I walked in she was foggily telling the doctor about her plans to go back to EuroMed to receive chemo for at least two more weeks. The doctor’s response was to ask her if she wanted to be put on a respirator if it came to a point where the pneumonia in her lungs got too bad. My dad, Devra, Gramma and I were all standing around her bed, paralyzed and praying she wouldn’t opt to be kept alive on a machine. My mom pulling a typical, level-headed Colleen move, asked the doctor to leave the room so she could talk to her family. Telling my mom that she was going to die was the hardest thing I have ever done. But she deserved the truth. She was shocked and upset, but after a few minutes in her own head she said she was at peace and asked for her meds so she could go to sleep. She had decided to go to hospice. Aunt Devra, Uncle Colin, Gramma, Grampa, Daddy and I all sat in the hospital cafeteria in a daze. Lunch tasted good…I think.

At 2:00 my dad rode with my mom in the ambulance over to the Hospice of Arizona. The ride was hot and my mom was in a lot of pain. There is no way to sugar coat this so I guess you should skip this paragraph if you don’t want to know. Once she was settled in her room at the hospice, they had trouble managing her pain. Every exhale was a moan and I so admire my dad, aunt, uncle and grandparents who stayed with her during those terrible hours. I sat next to her for a little, stroking her hand and singing to her. But I wasn’t there long. My dad and I went home to have dinner and take care of Butters. Around 8:00 pm we brought Butters to the hospice (pet-friendly!) and he only relaxed once her was on her bed, licking her swollen legs and feet. Devra and Colin took the night shift while my dad and I went home to get a good night sleep.

We woke up at 4 a.m. and got to the hospice at 5 to relieve Colin. She was due for another dose of pain medication when we got in and each breath she took was staggering. My dad knew it was the end. He cooled her legs by gently rubbing them with a wet cloth and told her how much he loves her. At 5:30 her breath became more labored. I thanked her for being such a great mother and held her hand as she slipped away. I am so grateful to have been with her. It seemed so right.

The rest of the family showed up as soon as the news was out. Her mother held her hand and kept it warm to ensure that her spirit could move on peacefully with our support. Colin brought coffee and donuts and we all hugged and cried and talked and made phone calls. I picked Joseph and Blossom up from the airport at 9 am. He came to the hospice and said his final goodbye. Her parents saw her body off safely. We found ourselves all together, sitting around the table, laughing and telling stories. Devra and I realized that she had spent fewer than 24 hours in the hospice. This is what she would have wanted. Thank you to everyone who has stayed with her by reading and contributing to this blog. You have helped create a tangible memory of her that is truly invaluable.

Final words? What a crazy adventure we have had indeed! I love you forever Mommy. 

Changing things up a little

Hi. Its Maggie again. You may have just read my dad’s post. Heavy stuff. I know. Just to clear things up, my mom is still in the Banner Thunderbird Hospital here in Phoenix. This is a wonderful hospital. She has a corner room to herself with two huge windows, her own bathroom and a convertible couch I can sleep on. The nurses are friendly and kind. Compared to the other hospitals I have been to with her, this one gets an A+. And who would have thought we would find it out here in the desert (a million thanks to Devra for discovering it and getting my mom admitted while she was out here)

I know some of you may think I am crazy for being so grateful she is in a hospital. But having been with her the week before we took her to the ER gave me some perspective. As she wrote in her last blog, she was slowly drowning. There was very little Devra and I could do to alleviate her misery. The X-ray of her lungs had shown up clean and the doctors at Euromed thought they sounded alright. Turns out she needed a CAT scan to show what was really going on in there. I guess we could beat ourselves up about not having seen the obvious and insisting that she get more medical attention, but what on Earth would that accomplish? We're all doing our best, trying not to fall off this crazy caregiver tightrope. I could boil in my anger with doctors and treatments and the gods all day long. But I'd rather just accept that sometimes, shit happens.

Once they had drained the litres of fluid out of her lungs in the hospital (for the second time, mind you!) and she could breath for the first time in weeks, I told her she had officially won the tough cookie award and that she is now under strict orders to stop striving for it! I wish my mom could see how brave she already is. She inspires me every day. 

Anyway, it is such a relief to finally see her receiving the care she needs. But in addition to the nursing staff and the three of us here, (soon to be four with Devra flying out again tomorrow) I thought my mom could use some extra support from her dear friends and family who read this blog. She needs all the love she can get right now.

So I was thinking that to change it up a bit, we could cut out cancer talk for a little. Nothing about this pain-in-the-ass disease, no words of encouragement. I think it would be great if everyone who is able to would comment on this blog post. Write something you love about my mom. Maybe a trait you admire, a funny story, or a great experience you shared together. I know it will brighten her day and lift her spirits to read what you have to say. If you have trouble commenting directly on the blog, please feel free to email your message to me and I will post it for you. My email is margaret.k.brown@gmail.com. 

Triumph Over the Shadow of Death - posted by Steve

I’m glad to report that Colleen is sleeping peacefully.  For the past three days, she has been steadily sleeping more and being awake less.  Here’s most of the drugs she is on:  dilaudid, 1-mg every three hours; oxycodone 30 mg every three hours; zofran unknown dose every three hours; phenergan unknown dose two or three times a day; ativan every 8 hours, colace every 12 hours; unknown bronchodialator inhaler every 4 hours; some kind of blood infusion once every other day; prealbumin once a day; and a drug to control the swelling in her abdomen once per day.  Her vital signs are being constantly monitored, including her blood oxygen which requires having a probe hooked up to her finger.     

All these drugs are doing a really great job controlling her pain.  She is not, however, on any drugs at the moment that will slow down the growth of her cancer.  Her lungs are the weak link, and the pulmonologist is planning to try a surgical procedure to slow down the fluid that is now refilling her lungs.  

When she is awake, she would have you believing she’s going to walk out of here tomorrow and resume her IPT chemotherapy treatment at Euromed.  And that’s what the staff here wants and they all think Colleen is special too.  We are having a great time talking and remembering all the good times we’ve had, and coordinating and supplementing her care.  We adjust her pillows, scratch her back, rub her feet, keep track of what she’s eating, keep her using the little blue plastic thing that exercises her lungs….

If Colleen were up to writing today, I think she would say something like this.  “I know this will have been a hard blog for many of you to read.  You, of course, don’t want to think about my losing this battle.  Well, neither do I so I’m not going to!   Thanks to you, I have triumphed over the shadow of death.  I know that I will see you all again, I just don’t know when. I am at peace with myself, and at peace with the world.”

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.

Laughs, Tears, and Jabba-the-Hut

Hello everyone. This is the patient's daughter checking in again. I thought I would provide some new information. Yesterday, we met with the doctors at EuroMed. My mom, Devra and I sat around a little circular table with Wanda and the head doctors to discuss her treatment plan. We all agreed that the biggest problem right now is the enormous amount of swelling my mom is experiencing. We are guessing that she has gained around thirty pounds of water weight. To put it in perspective, that is over five big bags of sugar she has to carry every time she moves around. Of course, she approaches it with a sense of humor, calling herself Jabba-the-Hutt. We’ve had a few giggles over that one (especially when she kept saying it in front of the doctors and they couldn’t respond in fear of insulting her!) Anyway, the doctor’s seemed very optimistic. Her white blood cell count has gone up and her lung may be ready to have the catheter removed. We will be taking the necessary steps in the next few weeks to finally get that darn thing out of her! At the end of the meeting, it was concluded that my mom will receive IV Albumin. Her natural levels are low, which is known to cause severe swelling and shortness of breath. We are hoping this will allow her body to drain some of the excess fluid that is storing mainly in her abdomen and causing an extremely uncomfortable amount of pressure. Next step (on Thursday after IPT) is giving her a diuretic. Then we move onto the IV vitamin C and pray that her lung will continue to drain nothing. Then we can do chest x-rays and remove the tube!

As I said, we are taking this moment by moment. My mom was on phone calls with her clients for three hours yesterday. I love how strong and confident she automatically becomes when she is helping other people. I am inspired by her unfailing ability to find energy and positivity when it comes to her work. After her phone calls she talked energetically with the doctors for another hour. So it was not a huge surprise that by the time we got home, she was exhausted and in pain. She spent the rest of the day on the couch while Devra took care of calling the hospital to check how long the chest x-ray/catheter removal process would take. She made my mom comfortable, got her everything she needed, kept things neat and took care of Butters. All the while she managed to remain relaxed and cheerful. It is so wonderful to have her out here. 

This morning was hard. We headed to the clinic early because my mom wanted oxygen. She was feeling very short of breath. With all that fluid squeezing up against her diaphragm and lungs, this makes some sense. The doctors arranged for her to receive oxygen at home. We all know this sounds bad, but it really is just a precautionary measure to provide my mom with more comfort while they work on reducing her swelling. We were joking yesterday that my mom needs that giant juicer they used to squeeze Scarlet back to normal in Charlie and the Chocolate Factory! Unfortunately EuroMed doesn’t seem to have this contraption in stock right now.

My mom plans on blogging again very soon. She would have done it yesterday, but we all agreed that this blog is for her and she shouldn’t feel the slightest bit of pressure to write if she is not up to it. For now, I will try my best to fill in the gaps when I can. My love to all the friends and family who follow this crazy cancer adventure. As I said before, your support means the world to both of us. 

A Daughter's Perspective

Hi Everyone. It’s me, Maggie, Margaret, Sweetie-pie etc. My mom gave me permission to log on to her blog so I can share my perspective of life out here in Arizona and keep everyone a little more in the loop. First off, I want to thank all the loving friends and family members who have been diligently reading my mom’s blog. It means the world to me to know that my mom not only has us, but an entire network of people around the country and the world who support her through this hellish journey. I have been surprised and overjoyed to find that a number of my friends, a few of whom I haven’t seen for years, are keeping up with her posts as well. I am not even 20 yet and have already found so many caring and passionate people in my life. I guess there is a silver lining to everything.

I will not attempt to write something as inspirational and engaging as my mom’s blog posts tend to be. She writes so beautifully and no matter where I am, I can always hear her strong, confident voice through the small black print. So I’ll just state some of the facts. Last week the tests from Euromed showed us that my mom’s tumor count had almost doubled. Even with a small amount of chemo only twice a week and no other IV’s, my mom had been feeling terrible. So although this was bad news, it was not entirely unexpected. It’s funny how you can know something in your gut for a week and be totally fine. Then one morning some guy in a white coat says three sentences and it all hits you at once. After Doctor Zieve told us that the cancer was resistant to treatment and that Wanda (one of the other doctors) was going to tweak her treatment, my mom and I went to get some food at the Good Egg across the street. I felt shocked and empty. But I also remember thinking that the only difference between right then and that morning before treatment was that we knew one fact that we hadn’t known before. I had been perfectly fine at 6 a.m, walking Butters and enjoying the morning sun.  Now it was 9:00 and I had this terrible feeling of dread. It seemed silly, really. My mom was in exactly the same condition, except now that we had this knowledge, there was the possibility of actually doing something about it. So as I sat there holding my mom’s hand across the table, eating semi-shitty American breakfast food, it dawned on me. The only way this was going to work was if I made myself truly believe that this is not the end. There is absolutely no point in “preparing myself for the future”, in thinking about whether this is “worth it” or not. I am going to stay positive. She is going to get through this. There is no other possibility right now. And that, is that. Since Friday, my decision has provided me with a lot of relief. I am not going to kid myself into thinking I won’t cry or break down every now and then. Like everyone else who loves my mom, I hate seeing her in pain. It makes me sad and angry and frustrated. But it cannot alter the simple knowledge I now have that she is going to get better.

Now for some more current information. This Friday my mom received her new chemo “cocktail”. One thing is for sure, it is definitely different and is taking effect. Unfortunately we know this because a few hours after treatment she felt horrible. Overwhelming nausea, chills and weakness. Thankfully her brother Colin arrived from L.A. in the nick of time and immediately made himself useful by preparing cold drinks for my mom, cleaning and picking up a few necessities at Walmart while I held my mom’s hand and stroked her hair. My uncle is blissfully laid back and a wonderful presence to have around. He seems equally happy to help out or keep to himself. It’s a huge comfort to know that there is someone there with my mom when I take go to the gym or the pool.

The good news is that the rash on my mom’s back seems to be fading a little and she is draining almost no fluid from her lung. ALSO, when we went into Euromed last week they did not like the sound of her right lung (the one without the catheter in it) and arranged for her to get an x-ray at the hospital that day. We were both terrified that this would show that the cancer had spread to her other lung or that the reason her catheter hadn’t been draining much was because the catheter wasn’t working and her lung was consequently filling up. It turns out neither one was the case. Phew!!! Her lungs both look fine and there is only a small amount of liquid in her left lung that should continue to drain out. Woohoo! We are hoping that if she continues to drain so little from her catheter, she will be able to have it removed. This would give her back a great deal of mobility and comfort.

Right now we are focusing on getting the nausea under control and looking forward to getting that catheter out. It’s the little things that count and we are taking life moment by moment. This morning Colin picked up my mom’s sister Devra at the airport while I got a few extra hours of much-needed sleep. A few hours after they were back, my mom had an hour when the oxycodone had kicked in and the nausea was under control. Devra rubbed her feet while Colin made us all some coffee. My mom lay down on the floor to do some stretches. She was smiling and talking before she dozed off into a peaceful sleep. Right now I am hanging out with my aunt, uncle and Butters in the living room. I am happy.

So that’s all for now folks. I apologize for the length of this post…I started writing having no idea what to say and the words just came tumbling out. My mom usually puts some parting words at the end of her posts so I guess I’ll follow in her footsteps. As the wise writers of Legally Blonde the Musical say, “Keep it Positive”. This is my new motto and I’m sticking with it. I have provided a YouTube link to the song below.

http://www.youtube.com/watch?v=nw1f-1x8xQo

Also, my thanks and love to Ann Olivarius for encouraging me to write this. 

To Hell and Back...

In order to try to deal with the persistent queasiness, I've tried all manner of things. One of the most recent was Marinol, a pill containing THC, from marijuana. I tried it the morning we went to the acquarium. First impression was that it did not work at all. I was nauseous all morning, and felt otherwise normal. After getting home, I waited a while before deciding to increase the dosage. At this point, I was lying down, and thank goodness. Some time after taking the second pill, I realized I had dozed off. I woke up with an incredible feeling of warmth (side effect), drowsiness and no nausea. This seemed good at first, but soon started to take on a nightmarish aspect. I kept having the feeling that I was dreaming or watching a movie instead of being awake. This disassociation, coupled with a slight paranoia was awful. It took hours to feel normal. I hated it. I imagine it could be useful if I were in terrible pain or vomiting. I hope I never need it! Yesterday, I tried another drug, in suppository form. It was a tough day already. In the morning, the doctor told me that, as I had suspected, my tumor markers had gone up not down. They fear the cancer is resistant and not responding. They will tweak my chemo regimen starting Friday. He told me not to give up hope. But it was hard news to hear. I found myself weepy and afraid all day. I took the medication in the afternoon. It didn't seem to make me less nauseous, at least not right away. But it sedated me. The sedation had a depressive effect, exactly what I didn't need! By later afternoon, I found myself in a state of utter despair. It's hard to describe how awful it was. I could not shake it, try as I might. I was in a Hell of my own making, trapped in my misery, barely able to be civil. I apologized to Margaret for being in a place so dark even her love and kindness could not reach me. I couldn't imagine an end to it, other than suicide, which I would not do, but truly seemed a better option than living in that kind of emotional pain. I was in Hell. I'm not sure how long it lasted, at least a few hours. Then, two things happened. I decided to take an oxycodone for pain, which I knew would also lift my mood. And I realized there was only one way out, which was to come to terms with the worst. I remembered that I was capable of finding peace, even without hope. I started to meditate, breathing and thinking about how my life is connected to a much greater reality. I allowed myself to feel that connectedness to all of life, how unimportant my life and death are in the larger scheme. And, finally, I found myself feeling peace, even joy. This is not the same as giving up. But, by feeling at peace with the possibility of my own death, I can enjoy my life, and face the hardest parts with greater courage. I do not want to die young. But I can face it if I have to. I know that now. And that makes it easier. Somehow, facing the greatest fear makes the smaller things easier as well. I know I'll continue to have bad feelings throughout this. But to know I can pull myself back from Hell itself, is a great comfort. I know this will have been a hard blog for many of you to read. You, of course, don't want to think about my losing this battle. I'm glad for that. But I need all available energy to do what I need to do. Knowing that my death is not the end of the world is something I need to know right now. If I am at peace with either outcome, then I am at peace with the world. Haven't given up, I'm just going to be happy either way if I possibly can.

Miserable, furious and terrified...magic words

Tough news to hear a teenage friend has cancer. She is at an early stage and will do well. But it's never easy news to hear, nor an easy thing to go through. I find myself thinking of her and her family constantly. I am feeling better today. Not great, but closer to normal, human life. Managed to eat normally, walk around and even mop the bathroom floor. I had a fascinating experience the other night. I woke up in the middle of the night feeling really awful. Adding to the distress was my fear of what this might mean for my prognosis. I was miserable, furious and terrified. Remembering my Sedona training, I decided to just admit what I was feeling to myself. I said in my head "I am miserable, furious and terrified." and I repeated it. And repeated it. And, almost instantly, an image popped into my head that the words themselves were creating a white wall or belt inside my head, blocking out the nausea, pain and fear. I felt instantly better and fell asleep. When I woke later, I repeated the words and it worked again. Isn't the brain amazing? I don't know why this worked and it doesn't seem to work as well when I'm fully awake. Still, it was intriguing and awesome when I needed it. More crazy stories from the front lines...

Not dead yet...

This has been a rough week. At the moment, I am watching law and order with Jessica, Holly, Kathrin and Butters. I am waiting to meet with the doctors and find out if there are any signs treatment is working. I am continuing to feel worse, generally. The transfusion helped noticeably but I am still close to bedridden and nauseous much of the time. So I just wanted to report in that things are tough but I am hanging in. The good things are as follows: I have wonderful friends. My kids are top notch. Joseph arrived on the 4th and has given me lots of hugs, foot rubs and sympathy. Even better, he's been a great companion to his sister. I love to see them being good to each other. I have my sense of humor, much of the time. Not much energy for more now, but do keep in touch. Watched Monty Python and the Holy Grail last night, hence today's title! Grateful for you all! Love, Colleen

Fresh blood to feel better

Tomorrow I get a blood transfusion. Yippee! I am nervous about the risks but my hemoglobin counts are just too low (8.9) My blood is lousy, need some new and improved blood from a healthy (we hope) person. I Had big trouble falling asleep last night and hope it's because the shot they gave me for hemoglobin is also working to build red blood cells. I also hoped this would mean I'd wake up feeling better. Alas, not to be. I am still quite tired and feel lousy. The nausea is better, which is a huge blessing. I am not in much pain. But there is still that thing called malaise, just feeling unwell. Lousy. Yesterday, they drew my blood and gave me chemo. Quite concerned about how pale I was and my reports of feeling awful, they gave me a shot and ordered the transfusion. The shot effects should be longer and the transfusion works right away, so the combination is best. My Dad and Margaret arrived here on Friday afternoon after driving cross-country. Hey had a wonderful trip, each praising the other for being a great traveling companion. They listened to books on tape, talked and were quiet together. Dad was especially impressed by Margaret's driving skills and her ability to be ready in exactly 20 minutes after he knocked each morning. It was the longest time they had spent alone together, and I know both of them thought it was terrific. Mom must have appreciated some help at the end of a pretty rough weak, as I was mainly bedridden and pretty miserable. She was a great help, taking care of everything and sympathizing with my frustration and despair when things kept getting worse. Over the weekend, I had a low-grade fever, pain and tons of nausea. Boy, is it hard not to get really bummed out. Adding Margaret and Dad to the mix might have made it harder, in some ways, with all of us in the same space. I think what really helped was Mom finally finding her way to the larger pool here and doing some great swimming. It's hard for the caregivers to take care of themselves. Margaret is very smart about that, swimming and working out almost every day. My parents left early Monday morning and my dear friend Kathrin arrived that evening from Germany. She and I met when she was an exchange student in my high school. We were in the chorus together and have kept in touch every since, even with long, long gaps during which we didn't see each other. When we moved to Brussels in 2001, we took many opportunities to renew our friendship, visiting her in Munich and having her with us. Since then, we've managed to get together almost yearly. Still, it was a surprise when she offered to fly here for a week. I'm afraid it's not much of a vacation for her, but she is cheerful and claims to be enjoying the total relaxation here. Joseph arrives this afternoon. I am excited, since I haven't seen him since Christmas. By all reports, he is doing very well, enjoying his internship at Abbott labs and plenty of time at the beach. He spends some nights every week with Devra and Sergey and some home with Steve, who is enjoying their dinners together. The other day, I was at a very low point, when the misery of how I was feeling and the fear that the treatment wasn't working. I knew the stress of despair and anger were not helping me, but could not find a way out of the blackness. And, suddenly, I had a thought. My life is not a book, or a movie, or a play. It's not the end that matters. When you die, how you die, is just one more event. A thing that happens. A thing that does not necessarily have more meaning than anything else. Of course, death is the big event that annihilates everything that would have come after, the killer of potential events. But it does not need to effect those that came before it. So that's my goal, to step out of the shadow that the fear or dying can cast backwards onto my days. Not easy, of course, but it helps to tell myself "it isn't the ending that matters." Its hard to live in the moment when the moments contain pain, nausea and feeling crappy. But there are times when none of the above is too bad, and I can breathe and enjoy being alive. Right now is one of them and I'm grateful. Grateful for Kathrin, Margaret and Butters nearby, for Joseph in the air heading towards us, for all of you reading this. It is good.

Feeling better

I have been out of touch because I've been sick. It's been a rough week, and getting worse until today. I think I picked up a virus in my lungs. For some reason, I've also been very nauseous and dealing with pain. The lymph nodes under my right "good" arm started to hurt like heck a few days ago. This was terrifying, as it meant the cancer has traveled again. It also had me worried because the entire nightmare started when my left lymph nodes went nuts and I was in agony until they were removed. I had one bad night here when I woke up in pain. Mom heard me and came in to sit with me for the very long hour it took for 2 oxycodone to manage it. It was a huge gift to finally fall asleep. When I met with the doctors, they still felt this was probably just more of the body responding to cancer cell die-off with inflammation. They also decided to take me off all ivs except the chemo in a bid to reduce the lung filling up and remove the catheter. So far, this is not working. It may be the virus I picked up (running a low grade fever), but the lung is draining more, not less. But the worst over the past few days has been nausea that makes it hard to eat, which makes me hungry, which makes me nauseous.... Anyway, woke up this morning feeling not much better. Mom helped with the wonderful morning routine of draining the lung, taping the tube back in place with antibiotic ointment, trying to eat something (toast and eggs) and trying to fall asleep again. Then, miracle of miracles, I woke a few hours later feeling better! Ate some fruit salad, eggs salad, and am blogging. Boy, I hope this is the turning point. I still don't know if this treatment is working well enough to keep up with the cancer, which is still growing fast. They will check my blood markers on Monday. I am not optimistic for this time, but still hope that I, like others here, will see results over a longer period. The hard part is going to be managing the nausea, as both the chemo and the oral treatments cause it. You would think it would be easy to say "it's worth it if I live." But that's a lot harder to do than you'd think. I've decided nausea is worse than pain, which can be controlled with narcotics. It's bad to be in la la land, but not unpleasant. Anyway, wish me luck in keeping this under control. A whiny post, but that's what's been going on!

Engineering and other triumphs!

Two pieces of good news. First, my white cell count is back to normal! This means I'm not at increased risk of infection and is a sign of things moving in the right direction. Second, my drainagew kits arrived. However, as I feared, having used the wrong kit over the weekend damaged my drain. When I connected it to the new drainage kits, nothing came out. Worst case, this could mean having to replace the catheter (more surgery? No thank you.) But I have not lived in a family of engineers this long for nothing. And I kept hearing Steve's voice in my head saying "Babe, you are super smart. You are very good at this kind of thing. " So, the way I figured it was this. The connector for the wrong kit did work. It was an inch long plastic needle that I shoved into the catheter valve (pushing its innard backward to make it a two-way valve.) Problem was, when the tube/needle was removed, it had become a one-valve the wrong way, like pushing a lobster trap in on itself. After a few false starts that involved cutting my finger with a razor blade, I sacrificed the wrong kit, cut off the needle bit and shoved it in place to see if it would work as an adaptor. Eureka! Yellow fluid started gushing down into the bag, victory dance, yahoo! So now we just have to hold onto the little plastic bit, soak it in alcohol to keep clean, and hope it holds out until I no long need the catheter. That's it for now!

Sweet consolations...

Colin left Friday afternoon, right after I got back from my wonderful oncology massage. I was totally relaxed, sad to see him go and grateful for a really nice week with my little brother. We hadn't spenr that kind of time together since we were kids and we got along very well. He is a big animal lover, so Butters got another fan. He was a great caregiver and companion. Such a nice opportunity that came out of this mess. It was interesting being on my own for a half day. In the end, it was fine, but I realize how spoiled I've gotten in having someone around to walk Butters and get things for me when its so hard to move without pain. It makes me grateful that my family has insisted on my being accompanied throughout this time. At around 10:30 p.m., my friends arrived. They had managed to coordinate themselves to arrive from Boston, San Francisco and Jersey into one rental car. I can't even begin to tell how great it was to have them here. I've known Kristen, Susan and Bridget since we moved to Andover, CT when I was 3. Jacqueline joined the party when we all went to the regional junior high at age 12. So, we knew each other when. We started by getting into bathing suits and taking Butters out to the pool, where he isn't allowed. We happened to encounter the man who had just turned out the torches. He apologized and told me the dog wasn't allowed. I smiled and said "I know," at which he shrugged and left. I have changed. I think it can be filed under "things you finally realize you can't control," and I find I just don't seem to care as much how people think of me. While I can see why they have the rule, I can also see why it works best if not well enforced. If someone cares enough to complain, or if others with badly behaved dogs start to bring them in, then I'll put Butters in his crate. Until then, he seems to spread a lot of joy at the pool, as people laugh at his comical greetings and obvious happiness to be there. So we sat on the pool steps (I still can't swim but they did,) in the dark and relative cool (I'd guess around 90 degrees), and started our visit. Not all of us have kept in touch, so we had some catching up to do on families, careers, living arrangements, etc. We had decided to bunk in, despite not having quite enough beds and (to my embarrassment,) blankets. Nonetheless, by midnight, all were settled in under sheets on the beds, aerobed and couch. This is kind of a funny way to entertain. I mean, I had very little in the house ready for them, not even blankets! Yet, they weren't in a mood to complain. It wasn't the point and it was a little weird, a situation in which there isn't a norm to follow. Despite this, or maybe because of it, we had an amazing time. In the morning, Jackie drove all of us to drop me off at acupuncture and they all went out for breakfast. Their massages started at 11 a.m. and I got a kick out of seeing each of them return with the identical rosy, slightly puffy and wide-eyed look of someone just awakenEd from a lovely nap. It was great that the massages forced us to do nothing but hang about all day. One essential trip was made by Kris and Jackie to Bevmo to get the ingredients for Margarita's, prepared by Sue. I took a nap while they sat by the pool and we headed out for dinner at 7. Nobuo was recommended by Kris' friend who lived in Japan as some of the best Japanese food in the country. We couldn't get a reservation but were told we might get into the lounge if we just showed up. We seemed a little late for that, but pressed ahead. I think we all envisioned being crammed into a bar around little tables, rubbing elbows with strangers. When we got there, we were shown right away into a separate room with a leather couch, little ottomans and a coffee table, all to ourselves. The building was turn-of-the-century brick, with 14- foot ceilings, skylight transoms and original woodwork. Settling in with really great cocktails (just sips for me after a Margarita) that tasted tangy and of jasmine tea (only Sue's wasn't great, tasted of soap), we looked over the menu. It's my favorite way to eat, with small dishes meant for sharing. I was content to let everyone else order and, with a total of 11 small dishes for the 5 of us, our feast started to arrive. What a totally perfect evening. The food was fantastic, interesting, fresh, yummy. My favorites were a watermelon salad with chèvre, soft shell crab salad and sea bass with enoki and morel mushrooms that just melted in your mouth. We split the only two desserts on offer, an incredibly smooth chocolate mousse with green tea ice cream (perfect) and almond beignets with caramel sauce and ice cream (divine.). Lots of laughs, love, photo-taking and the perfect amount of fabulous food. It helped that I was on oxycodone for the pain, I'm sure! Sunday morning was rough for me. The antibiotic and niacinamide I take make me nauseous and I have to be super-careful how I manage it with anti-emetics and eating enough. I was sloppy and paid the price. Hard as it was, it was very sweet to have Sue rub my back as I retched and sobbed over the toilet. It's not just the great times that make you appreciate your friends. Oddly, though I didn't vomit, just the retching seemed to help and I felt ready for our outing. The Heard Museum of Native American art and history was great. Sue was smart enough to suggest a wheelchair and I was smart enough to go for it. After a nice lunch in the cafe, we spent a few hours in the museum. Kris adored the Kachina dolls in particular and Jacqueline, who studied Native American dance, was really psyched to be there. My Mom called to say she'd arrived and we managed to get her into my apartment to wait for us (where she immediately started ironing, bless her heart!) We probably stayed 30 minutes too long because I started feeling a bit desperate for a rest, but I'm really glad we went. When we got back and I had another nap, we headed out to Cafe Barrio for excellent Mexican food, sad and sweet goodbyes and they were off to the airport. Mom and I are having a great time. She came with me to treatment and sat there as I slept. Obviously, visiting did take up some energy, since I slept in the treatment chair from 7:30 to 12:00, right after a good night's sleep! My lung still hurts since I can't drain it fully, but the catheter infection seems less sore. It's nice to have a quiet day, but I am so, so, so happy my friends came out. It was one of the happiest, sweetest times ever, one of the great things that can come only from adversity. Can't say it's worth it, but it's a tremendous consolation. Thanks again!!!!

Hot as...well very hot!

I am lying in the air conditioned cool. It is 109 outside and my body screams "Run away, Run away!" (reference my favorite line in Python' s Holy Grail) as soon as I'm out in it. That said, I did just manage to lie out in the strip of sun on our side porch for a few minutes to try and make some vitamin D. Before that, I had the most wonderful oncology massage. The daughter of the manager here does them for a song for Euromed patients and offers the same intro rate for anyone. So, they are en route and won't see this, but I've signed up all four friends for a massage tomorrow. Hope they like massage as much as I do! Actually, it's my parents paying for this out of the fun money they provided for this visit ( Thanks, Mom and Dad!). Flowers just arrived (for the third time) from Stan and Leanna, my parents-in-law. I adore fresh flowers and appreciate this gift very much. I am resting up in wait for them to arrive this evening. Colin left after a wonderful week of taking good care of me, lots of laughs and love. My Mom arrives Sunday to stay for a week. I am very well taken care of out here! I even got to join Margaret, Joseph and their friends for chili night (Steve's famous chili brings the Bernard's High crowd every time.) What a lovely group of young adults they've turned out to be. As to treatment, I am feeling less fatigued, though not up to much yet. Nausea is manageable. The lung continues to fill and drain, due, I am now convinced after some research Colin did, to all the IV treatment I am getting. I also put on 5 pounds in a day, so I'm clearly hydrated! Thankfully, I have no edema in my limbs ( except for same old left arm post-mastectomy). The vitamin c also apparently causes fatigue, so I assumed that's it. I am a bonehead to have misunderstood about my counts. White blood cells are low and being treated with nupagen. Platelets are fine! Blood draw Monday will tell us more. Finally, the damned catheter got another little infection at the exit site and I was hobbling around and whining for a few days. Ointment did the trick and I feel much better. What a pain, but I'm glad to have it if the vid are going to keep the lung effusion going. The euromed folks said one patient's lung just cleared up with the acupuncture. I am SOOO willing to be stuck with tiny needles if that works for me! Bye for now. Colleen

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!

Two big days in a row...

Lots of news. After my IV vitamin C treatment yesterday, I felt so good I decided we should drive to Sedona. We headed north around 10 a.m. What a drive! The scenery keeps getting more spectacular as you go. In an hour and a half, we hit red rock desert, stopped to buy hats and get a map at the visitor center and admired the incredible view. Next stop was some chapel. You drive up around the bend but then it's a fairly steep climb around a paved path to the top. I felt like I could make it and did, even under the broiling sun. A bit cooler up there, it was still what a northeasterner would call HOTTT.

On the way up, I glanced at Butters, who was looking very worried. His head turned around pleadingly, hunched over and delicately lifting one paw after the other, the poor thing was being burnt! Steve scooped him up and all was well. After the chapel, we headed up to Sedona itself. The tiny town is quite touristy but not terribly tacky. Steve parked the car while Margaret and I sat in an outdoor cafe under big, yellow umbrellas. Lunch could not have been more perfect. The service was incredibly friendly, the food delicious, the breeze kept it from being too hot, and they provided water for the dog as a matter of course. Mexican food, very fresh and delicious. Yum! We headed farther North to Slide Rock state park. What a blast. Although we couldn't take Butters down to the creek, we took turns and even I managed to do a little sliding on this natural water slide where the creek runs over flat, smooth rocks. The water was 63 degrees and unbelievably refreshing under the hot sun. I can't wait to go back when I have my catheter out! Margaret and Steve were able to slip in and out of the pools and get really wet. Soaked and happy, we headed north yet again to loop up and catch 17 south. On the way, we passed through even more microclimates, including a pine forest that seemed positively Alpine if you didn't open a window. On our way back, we stopped again to show Margaret the cliff dwellings at Montezuma's Castle (I called it Table in error before.) I felt strong enough to walk in with her and see it again. Glad I did.

 We got back to hotel, dressed in a hurry and met Jeff and Dian Weisman for dinner. Jeff was my Master licensee with ActionCOACH and I haven't seen him in ages. They are both wonderful people and we enjoyed a really good Thai meal. Jef and I agreed to get together again before I leave to reminisce and talk over all the stuff that bores everyone else silly.






 The big news for today is that we moved! Thanks to my wonderfully generous in-laws, we are out of our tiny hotel suite and ensconced in a furnished apartment. The only ones in the area are called, accurately LUXURY and we are feeling well and truly pampered! Margaret and I can't wait to use the two pools, spa (very inexpensive massages) free yoga and zoomba classes. Plus, their smallest unit has two bedrooms and bath, so we are much better set up for all the wonderful folks coming to visit and/or look after me. I was starting to feel claustrophobic after just two weeks sharing one room. Even with a suite, there were no walls and nowhere to escape if you couldn't sleep or just wanted space. I feel better already! To see the place, click Video Tour of Sage Apartments

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!

Enjoying the sunshine and getting better....

i left my electronic plastic room key in the direct sun for 15 minutes and it warped too much to be usable. it is hot out here! we are having a nice time. treatment seems to make me queasy and tired, but nothing like "real" chemo. We have settled into a routine. steve goes for a walk with Butters in a local park with Abraham, the walking buddy from Syria he talks to about world events. On non-fasting days, I eat and then we head to treatment for 7 a.m. On chemo days, like this morning, I fast and arrive hungry. After a bout 20 minutes of saline and magnesium drip, they inject the insulin through port. Lucinda wanted to know the dosage. It is 24,000 of humalog, for whatever that means. Hope i got that number right. After 15 minutes or so, she tests my blood sugar. Once it hits 50, she quickly injects the chemo and I drink juice and start to eat. Its not a good feeling to let your blood sugar get that low, I have to say. My hands were shaking as I started eating, but it lasts just a while. After this, I moved to the injection room to sit with everyone else and get my ionic foot bath and foot massage (yum!) while getting my multi vitamin treatment through the port. today I also did the hypergravity machine. this is a very weird experience of being vibrated very quickly as you stand on the machine. By keeping your knees slightly bent and leaning forward onto the balls of your feet, the vibration doesn't go to your head, which feels better. SImply standing on the machine is strenuous, its hard to explain why. Anyway, it is supposed to increase lymphatic drainage, which makes some sense, since that circulatory system is activated mainly through muscle movement. Based on Steve's research, we have decided to do IV vitamin C 3 x week instead of once. It seems, if nothing else, to make me feel better (although it can also make me nauseous.) I had a coaching call with a client and have gotten Mary BEth onto the task of setting up regular appointments with everyone I coach. Coaching a few clients a day in the afternoons is very do-able. It is good for me to keep the connection, and I hope good for my clients! ANyway, we are off to Wal-Mart for vitamins and supplies, as well as to fill a prescription for an antibiotic that will hopefully discourage the cancer going into my bones. Good idea! We have been having a wonderful time with Steve's cousin Lisa and Aunt Lucinda. What a great couple of women they are, and watching them bask in the desert sun and brun away their Seattle dampness is fun. They both love it here! We met two of Lisa's dear friends for drinks after a lovely dinner in Scottsdale last evening. Tonight, they'll come here to meet Butters and we'll have dinner nearby. We'll be sad to see them go, and hope to persuade them to come back again!

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.

Treatment week one finished

Today is my final treatment for this week. I am actually lying here connected to the IV and receiving insulin, which creates a very odd taste in the mouth that someone said reminded them of band aids (I agree.) After chemo and vitamins on Monday, I had vitamins and detox on Tuesday. This takes place in the injection room, a large room with a circle of recliners filled with folks hooked up to IVs. There is much talk about treatment, symptoms, etc. It's an interesting group, all of whom have their own horror stories. With few exceptions, people come here after having exhausted traditional treatment. Many were told they were terminal. I seem to be less beat up than many, being fairly early along in the disease and treatment process. While getting our vitamin infusions, we take turns with the ionic foot bath (in which impurities are ostensibly drawn out through the pores of the feet into water, which turns a nasty brown color. Mine was particularly nasty, not only brown, but full of greasy-looking floating sludgy stuff. Interesting! We also get a special foot massage, and can use the sauna and a vibrating machine that is supposed to aid in lymph drainage. I haven't gotten either of these two yet and will do that tomorrow. Wednesday was similar, but I got my first injection of vitamin c. The dosage is low, and will go up next week and the next until I am at 75 grams. When treatment ended, I felt sort of lousy, queasy and tired. I went home to get sun and a nap. But, when I tried to sleep, I suddenly felt a rush of restless energy and got up. On wednesday, we also got a look at my blood test results. Worst news is that my platelet count dropped into the 50s. This is likely due to the two chemo treatments I got back east. I am right to feel the treatment would kill me. Let's hope it goes back up as I respond to all the treatment out here. My wonderful friend Jacqueline arrived last evening and we had a great dinner out, including a really delicious, if sinful, Margarita. After treatment, she and I will drive to Sedona! Can't wait.

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!

Arizona!!!

At 3 a.m., the itching woke me up. In reaction to God Knows What (chemo?) I have a large, itchy red rash over my chest, belly and back. But, who cares, today is the big move adventure. After looking at the drive, we decided to fly, with Butters. Not fun for him, but he survived and seems none the worse for it. My wonderful sister showed up at 4 a.m. for the drive to Newark airport. After locking the keys in the trunk with our luggage inside, swearing only a little (considering) and both Dev and I ganging up on Steve for being pokey, we were off in the dark right on schedule. My father-in-law had suggested a wheelchair and that turned out to be brilliant. Soon we were head through security with Butters on my lap, a nice gentleman pushing me and Steve with the carry-ons. Other than Steve getting through the security and starting to dress himself with no thought of poor Butters left behind, all went smoothly! The flight was long for a poor little doggie squashed into a small carrying bag but he did well but for one hour where we had to listen to him whimper and watch a little black snout and teeth repeatedly poke out through the zipper. But we are here at last. 10:30 am local time we were warmly received by Lisa at the front desk of the residence in. We got some sun by the pool, grabbed Mexican salads for lunch and I am about to take a nap. Steve and I have been a remarkable team at the start of this new joint venture. Tomorrow, I eat an early breakfast then fast and arrive at 9 am to start treatment. More as the details unfold.... Updates to visiting schedule. Lisa and Lucinda Kelly coming Sunday for 3 days! Joseph not coming direct from school but likely the weekend of 16th.

Visiting schedule so far

June 3-16 Steve with me June 7-8 Jackie visits June 8-10 Joseph and Maile visit June 15-22 Colin with me June 22-24 Kristen, Sue, Bridget (Jackie) visit June 22 ish Mom arrives This will continue to evolve. Feel free to add yourself into any other visits you'd like to join, or pick another time. I'm sure I'll be here all of June and my guess is July as well (provided I respond to the treatment!). Do not be shy...the more the merrier. This is a time to celebrate and be bold!

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!