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!