Friday, December 24, 2010

My Christmas Gifts

As I sit here on Christmas Eve, I feel extremely blessed. I'm home, safe and comfortable, finally in control of my environment, schedule, and diet, which does wonders for the psyche. Also, I'm finally free of the IV pole. (Maneuvering that around for 4 1/2 hours a day was quite a site. And no, you will not see me on You Tube re-defining pole dancing, as Mary suggested.) I'm doing well, eating more than I have ever eaten in my life, thanks to Zofia, and so very grateful for every healthy day.

My doctors are very happy with my progress, and I haven't had too many complications since coming home. My October 31, 2010 post mentioned Graft v. Host Disease, or GVHD, a condition where my new immune system, because it doesn't know where it is, will try to attack both me (not a great thing) as well as any leukemia it comes across (a very good thing). GVHD can be very dangerous, so I'm on meds to minimize this. Usually signs of GVHD show up between 30 and 60 days. I developed a skin rash that was determined to be GVHD the day I was discharged (Day 14). Since it's good to have a little GVHD, I might as well have it sooner rather than later. Hopefully, I'll avoid the other forms of this that can be much more difficult to deal with. Other than rendering my hands useless, the rash was not a big deal physically. It did, however, require me to start on a boatload of steroids.

I always thought that steroids are meant to build muscle mass, but apparently, not so if they're controlling GVHD for post transplant patients. I was around 90 pounds when I came home and was expecting to put on some weight when I started eating again. In spite of the incredible meals Zofia makes for me, I've only gained a few pounds. My doctor said it's the steroids, and that I may lose even more weight, as well as muscle. No wonder I don't feel as physically strong as I thought I would by now. I started to taper off the steroids, so this should get better with time.

It looks like I may have dodged one bullet with the steroids, which is the possibility of getting temporary diabetes. Although I usually avoid processed sugar because cancer feeds on sugar, I said to Zofia the other day, "We need some fruit pie and cookies!" I even broke tradition and agreed to let my Aunt Amy send me a tin of her fabulous homemade Christmas cookies. Yesterday my Arizona friend, Laura, sent me a batch of dairy free (she knows me well) chocolate chip cookies. I couldn't be happier. Zofia also made her famous homemade apple cake. Oh the choices!

I have three goals to reach by Day 100. About 50% of transplant patients end up being readmitted to the hospital for GVHD complications. I am determined not to be one of them. By Day 100, I should be able to unpack my emergency hospital suitcase. (I tried this once, just before I relapsed -- see August 24, 2010 post. I'm using a different suitcase now, so all should be fine.) Also at Day 100 I will have another bone marrow biopsy to determine if I am in remission. Since I achieved a total genetic remission before the transplant, and I had a perfect donor match, I'm optimistic about this goal. Most importantly, by Day 100 or possibly sooner, Sadie can come home again. I miss my kitty cat! She's been living with Mary and her family in Pittsburgh since I went in for the transplant because I can't be around her litter box. I can't wait to have her back home!

Although I thought I'd be incredibly bored by now, my days seem to be quite busy with post transplant care and other projects. Whenever I have a medical crisis, my mother in Arizona has a habit of presenting me with some competition. In 2006, a few days after having part of my lung removed, she fell, developed a brain bleed and ended up having a craniotomy. Last year, when I was first being treated for leukemia, she had a heart attack. This month, she fell twice within a week, which landed her in the hospital for injuries and later in rehab. She's recovering nicely, and will be released soon -- crisis subsiding.

Overall, I have to give credit for the peace of mind I have about my progress and ability to heal to Zofia. I was nervous about having a total stranger move in with me and having to care for me when I felt so sick. She has turned out to be the perfect caregiver. She's turned my kitchen into a restaurant. I came upstairs one morning to find her flipping homemade crepes! In addition to her delicious, healthy meals, she works incredibly hard, is just as OCD as I am, and she likes Bruce Springsteen! She's a friend and welcome companion who keeps me from worrying about how I would possibly do everything for myself when, at his point, I still struggle with the stairs.

Tomorrow, Zofia will be making a Thanksgiving dinner for Christmas since I was on a diet of narcotics that week. I spent the last two Thanksgivings very sick from treatments, and I'm really looking forward to some turkey and stuffing. Michael will join us and we'll have a great Christmas among friends. My very thoughtful boss, Scott, knew I wouldn't be up to decorating, so he brought over a tree, complete with decorations and lights. My place is full of Christmas cheer, and as I look at the totality of this Holiday Season, I can't imagine a more perfect collection of gifts, on so many levels. One of my biggest gifts this year has been your prayers. I know that I am surrounded with love and support, and it calms me, gives me hope and strength, and inspires me to have faith that all will be healed. I thank you deeply for this and I hope you all enjoyed a Christmas as meaningful as mine.



Sunday, December 5, 2010

New Beginnings

That was quite a November! I had the hardest three weeks of my life, and then received the gift of life in the middle of it. I'm told I withstood everything right on schedule and that 3 weeks was a short stay. I'd say I withstood the first 5 or 6 days as I usually do when receiving chemo: maintaining pretty well till the side effects hit. Then I started 3 days of another super strong drug, anti-thymocyte globulin (ATG), which is an infusion of rabbit antibodies to prepare my body for the stem cells and help prevent rejection. Then, two days before the transplant, I received 2 1-hour doses of full body radiation.

I was already sick from the rabbit juice I was getting, and the radiation just sent me on a journey that culminated in several days of side effects requiring three narcotics, including morphine. When I said in my last blog post that this regimen was "burn down the factory," it was no exaggeration. By the time Transplant Day came, Day 0, I was feeling pretty lousy. I had almost taken my eye off the purpose of this process, a new immune system. One of my doctors came in to deliver my stem cell infusion, which was a very small bag of light pink liquid, and said that she was very excited for me. "New beginnings!" It was all over in 20 minutes. Just like that. A new, healthy future. I've never felt such a mix of emotions.

Mary, always my wing man, drove from Pittsburgh 3 times in 3 weeks to be with me (over Thanksgiving too), and she and my caregiver, Zofia, helped me get home on December 1st. I'm on 4 1/2 hour IV infusion everyday at home to make sure I get enough fluids and electrolytes, but that will only be for a few more days. I'm teaching my legs and stomach to work again, and generally feeling pretty weak. But I notice a slow recovery taking place, and Zofia has been great. She cooks, shops, cleans, drives me to clinic appointments, does laundry, helps me with medications for each meal, and anything else I want her to do. The Transplant Team at Hackensack requires each transplant patient to have a full time live in caregiver 24/7 for the first 30-60 days minimum. I thought this was a bit much -- that I could handle myself maybe with some help from friends. I could not have been more wrong. So, as I write this, homemade chicken soup is waiting for me for dinner.

Today I am 18 days old. I can't go out except to clinic appointments for awhile, but at least I'll be home for Christmas and able to appreciate the holiday. I'm taking things slow, since that's the only speed I know right now. I keep wondering about my donor. I found out that he's European. (My friend Micheal said today, "Wouldn't it be funny if your donor was Julian Assange? Oh no, wait, he's Australian.") I decided to write to him a letter, which has to pass through the filter of the National Marrow Donor Program. We're not allowed to know any personal information about each other. I wanted to thank him for his sacrifice and ask if he would be willing to correspond with me. It was nearly impossible to know what to say. Knowing that Thanksgiving means nothing to him, I tried to express my gratitude.

This Thanksgiving was intense in so many ways. I am most grateful for my European perfect match. But I am also indescribably grateful to everyone who has been helping, supporting and praying for me. I hope you all had an amazing holiday.



Sunday, October 31, 2010

Home Again

After 6 weeks of incarceration, my counts finally came up and I'm out of the hospital! I started to think I was there for the long haul, all the way through the transplant for 11 straight weeks. But I came home on Friday, October 22, with 2 weeks of freedom before I go back in again. It took about a week to recover, but I'm now getting ready for the next phase and enjoying life at home with Sadie. I didn't realize how much I missed my kitty till I came home to all her craziness. The leaves are dropping, there's still color to be found on the hills and in the woods, and I savor every breath of fresh air.

I've been going to Hackensack about every other day for tests, appointments, screenings and more tests. Transplanting a person's immune system and eventually all their blood is very complicated. Here's the plan:

* On November 8th I'll go for a procedure to have a central line inserted into my neck. I have something similar in my upper right arm now, which makes drawing blood and receiving chemo, transfusions, medicines, etc. much easier. But they need even more access, so I'll have a souped-up version of a central line placed that day. It sounds worse than it is.

* On November 9th I'll be admitted and have all last minute pre-transplant tests and procedures. This is Day -7 in Transplant World.

* On November 10th, Day -6, I'll start a new chemo regimen that will blast away my bone marrow once and for all. I'm ready to break up with my bone marrow. It's a relationship that is not working anymore and it's time to move on. Unhealthy relationships become toxic and sometimes it's best to make a clean break. This chemo will, as Dr. Goldberg says, "burn down the factory." Once the factory is gone, there's no bringing it back. I'll have chemo and other drugs from Day -6 through Day -1.

* On November 15th, Day -1, my donor will go to the nearest National Marrow Donor Program transplant center to collect his stem cells. While I've been having my pre-transplant tests, my donor has been having a battery of tests too. A few days before his collection, he will begin getting daily Neupogen shots, a drug that will stimulate his bone marrow to make extra stem cells. This may cause him some bone pain as his bone marrow goes into overdrive. Then, as I understand it, for about 4-5 hours he'll donate blood out of one arm, the stem cells will be stripped from the blood, and he'll receive his recycled blood back into his other arm. He may need to go back for a second day of collection on November 16th.

* On November 16th, assuming enough stem cells were collected the day before, I will have my transplant. This is Day 0. It works much like a blood transfusion, and although it may seem anticlimactic, I'll be able to build a new factory. Much like any new relationship, things will be rocky at first, as my body and my new stem cells (which will create new bone marrow, a new immune system, and eventually new blood), get to know each other. It's a bit like an arranged marriage. All of a sudden, two entities will be living with each other, whether they like it or not.

* From November 17th through November 30th, Days +1 through +14, I'll be getting a special type of chemo to help minimize Graft vs. Host Disease, or GVHD, a condition where the new stem cells won't recognize my body as "home," and will launch an attack. It's understandable. If I were forced into an arranged marriage, I would launch an attack too. Big time!

A certain amount of GVHD is inevitable with a transplant from an unrelated donor. But since my donor is a perfect match, with 10 out of 10 genetic regions, hopefully this will be minimal. The upside to GVDH is that, although the new stem cells will attack my body to a certain extent, they will also attack any leukemia cells they come across. (That was the dealbreaker, and the reason we have to break up: my bone marrow stopped recognizing leukemia cells as invaders and let them begin to take over.)

* On November 25th, Thanksgiving Day, I will start getting daily Neupogen shots to get the new factory to start producing healthy bone marrow, and hopefully, this will be the last time that I have to wait for my counts to recover. If all goes well, I should be home around November 30th or December 1st.

Once home, the 3-6 month battle of GVHD will govern how easy or hard life will be. Although the factory will have been replaced, it will take time for the blood "still on the shelves" to be replaced by new blood that has learned to recognize my body as its new home.

It's a long road, which can only be traveled one step at a time. As Halloween night draws near, and the major holidays approach, I look forward to the season where everyone focuses on gratitude, blessings, loved ones, support for those having a hard time, faith in a higher power, and reflections on what really matters.

Over the past few weeks I learned of many people who either joined the Registry or were privately tested as a potential match. I can't begin to express how much this means to me. My gratitude to my donor is, of course, totally overwhelming -- something I have trouble wrapping my head around. Love for one another really does trump the negative things we do to each other, and it is with this vision of the human spirit that I take these next steps. Thank you for taking them with me.



Tuesday, October 19, 2010

Donor Found!

I almost hate to write this post, for fear that I'll jinx my good news. Although my counts continue to hover well below acceptable levels, I found out today that a donor has been found! All I am allowed to know is that the donor is a 33 year old male who lives somewhere on the planet. I also know that he is a "perfect" match, meaning that he matches 10 out of 10 genetic regions for the best transplant match possible. The results just came back from the lab, so the donor doesn't yet know that he's a match yet. Hopefully, in the next few days, he'll schedule a collection date and I will know my transplant schedule. If all goes well, I'll be admitted (assuming I get out of here) in about 3 weeks to begin the pre-transplant tests and chemotherapy, and the transplant will be a week later. With any luck, my month long transplant process will be from mid November to mid December.

I wish I could know more about my donor. After several months, I can write to him anonymously through the transplant center, and if he writes back we can communicate that way for the first year. Then, if he's willing, we can learn each other's identities. I hope he lives in a cool place for when I visit him to thank him for his sacrifice. But I'm getting ahead of myself.

The other good news I got today is that there are a few more people who are still in the queue in case something happens and Mr. 33 year old can't donate at the last minute.

A few minutes after I got the good news, I realized that today is October 19th. One year ago today I was told that I have leukemia. I began the hardest of my many fights against cancer on that day. Finding out that I have a donor today is the perfect example of yin and yang in action. Yin and yang come from the Chinese philosophy for the interdependence of opposite yet complimentary forces in the natural world. There is a perception (especially in the West) that yin and yang correspond to good and evil. However, Taoist philosophy generally rejects these distinctions, preferring to focus on the idea of balance. I prefer that interpretation too. I could use a little balance.
Yin and yang are not the only forces of nature at work here. God plays a pretty big role too. I've been praying like crazy, and I know that many of you have too, and for that I am eternally grateful. Those prayers are being heard, so keep up the good work!



Saturday, October 16, 2010

And The Beat Goes On

I was a big Sonny and Cher fan when I was a kid. As the calendar advances, I try to remember that, although the beat may not be changing, it does go on. Today is Day 31 in Treatment World. It usually takes about 25 days get someone with relapsed AML back into remission. Although Day 14 brought me great news that the chemo destroyed my diseased bone marrow, the next step is recovering healthy bone marrow so that a complete remission can be confirmed. Due to the damage that each treatment brings, starting with the first leukemia treatment last October, my marrow takes longer and longer to recover. That isn't the case for most patients, but most patients don't have problematic bone marrow due to chemotherapy 10 years ago for a different type of cancer.

So I wait, and wait, hoping that my counts come up soon so that I can go home before the transplant. If they don't, well, then I'll stay here through the transplant process, which could be another 6-8 weeks. I spoke to one of the transplant doctors today and she said that this situation won't threaten the success of the transplant at all. It does, however, leave me at risk for two things: 1. infections due to low blood counts, and 2. the loss of my sanity!

I'm getting transfusions of blood and platelets about every other day, as well as a drug to stimulate the return of my white blood cells, but I still haven't had the usual spike that typically happens by now. That could change any day, and I pray that it does. But for now, it's status quo.

That's not to say that the last few weeks have been without drama. I contracted a pretty wicked rash as a side effect from the chemo that looked like measles on steroids. Then I had a bad allergic reaction to a platelet transfusion. I always wondered what the Rapid Response Team did. Now I know. Lots of people doing lots of things all at once. Now when I need a transfusion, I get special platelets with lots of pre-medication.

And more drama: I may have mentioned that, in mid August, two of my cousins and I went to Arizona to move my dad into an assisted living facility because of progressing dementia. This was a huge feat, since the search for a facility, wading through Medicaid applications and assessments, and the move itself had to be coordinated from New Jersey. The day after I returned from the move, I had a routine biopsy, which is how I learned that I had relapsed. A little over a week ago (less than two months since the move), the assisted living manager called to tell me that Dad is sleeping all day, not engaging in daily activities, and may have pre-pneumonia. A trip to the hospital and lots more assessments indicated that, for his health and safety, he needed to be moved into the long term nursing center on the campus. Thankfully, with the help of numerous understanding staff members at these facilities, we were able to move Dad seamlessly, and he is doing much better. He's in good spirits and responding well. And because he's such a sweet, gentle soul, everyone loves him. I'll have his things packed and moved into storage next week, and by the time I have the transplant, I'll have peace of mind that he's completely taken care of, which will help my stress level enormously. It's funny how the timing of these events happened. Had we not moved him when we did, I can't imagine how things would have turned out.

Reading over this post, it sounds a bit depressing. So let's focus on the good news:
* Although a donor hasn't yet been found for me, my doctors are very optimistic that one will be found soon. This process typically takes 3 or 4 months, but they're hoping to speed it up, since I'm stuck in limbo land.
* I'm not sick with anything right now. If I can stay that way, I'll get through the transplant as well as anyone else.
* I'm getting really great care, here in Hackensack.
* The miners in Chile have been rescued! This story had been driving me crazy. Must have been something about being trapped and having no control.

Hopefully, I'll write my next post from home and a donor will have been found. I'd love to spend some time with Sadie before Mary moves her to Pittsburgh to live with her family for the next few months, but that would have to happen within the next week.

So far, things have gone well for me. At this point, I'm not willing to settle for anything less, as the beat goes on.



Saturday, October 2, 2010

Sometimes a gloomy day is not so gloomy

We had some pretty impressive storms in the Garden State this week. On Wednesday and Thursday the sky went from gray to gloomy, to dark and then exploded in sheets of rain and wind. I watched from my hospital window in wonder as I tried not to think about the importance of these days in my treatment plan.

Wednesday was Day 14 in Treatment World. (Day 1 begins with the first day of chemotherapy.) On my regimen, this is the day I was scheduled for a mid cycle bone marrow biopsy. This test determines if the chemo is working, or if I need more treatment. Getting the leukemia under control is necessary to proceed with the transplant, so I was anxious to learn how I was doing. The best result would be for my bone marrow to be completely empty -- no leukemia blasts.

I had the biopsy Wednesday afternoon, and on Thursday afternoon, Dr. Goldberg reported that I'm doing great: no blasts detected in my completely empty bone marrow! Now we have to wait to see what my bone marrow recovers. When my counts come back, I'll have another biopsy in 3-4 weeks to determine if I am in complete remission. This is the best state for a transplant to be most effective.

It's kind of freaky that I'm functioning as well as I am with no bone marrow. I feel pretty good, although I still get transfusions for red blood and platelets when they drop below certain levels. My side effects with this treatment, except for a wicked rash, were minimal and I made it through with little drama once the chemo was over. I still have my hair, although that will change when I get chemo prior to the transplant.

I'll be here for about a week or so, till my counts come up, then I'll be able to go home for about a month to recover. All this time, the search for an unrelated donor continues. My sister was not a match, but I'm optimistic that a donor will be found. It's a very complicated process that takes time. Transplanting a person's blood factory, either with stem cells or bone marrow, is pretty intense. The more I think about it, the more science-fiction-made-real it becomes.

The entire process is a bit overwhelming, so I'm trying to take things one step at a time. For now, I've overcome the first hurdle. I'm looking forward to getting home, veering off the In-Room Dining menu, playing with Sadie and enjoying the Fall colors. I've come to appreciate even the gloomy days.



Saturday, September 18, 2010

Be The Match: The National Marrow Donor Program

While I'm busy beating the AML beast back into remission, a national search is going on to find a donor that will be a match for me. My sister is being tested, but there's only a 1 in 4 chance that she'll be a match. If no one is found in the US, the search will go abroad. The National Marrow Donor Program (NMDP) or Be the Match, is the official registry for both stem cells and bone marrow searches and donations. I've had a crash course in transplants in the past few days, so I'll try to summarize what I've learned.

Several people have asked me how they can be tested so that the results can be directed to my transplant team. The first step is to check out the medical guidelines that list certain requirements for becoming a donor. Once these guidelines are met, there are two ways to be tested: Private Testing and registering with the Be The Match Registry.

Private Testing
Transplant matching is most successful if the donor and the patient is the same race and ethnicity. The NMDP is searching for donors for me that are Swedish, English or a combination of both, like me. If people are not in these categories, it would probably be a waste of time and money (it costs $150) to be tested privately. If people are in these categories, and want to be tested specifically for me, they can contact Lab Corp at 800-533-1037, where a Friends and Family account has been set up in my name. Potential donors would need to give their name, address, phone number, my name, and ask for HLA, A, B and DR screening (these are regions of genetic markers).

Lab Corps would send out a mouth swab kit, a requisition for the testing and federal express supplies to ship it all back. Once the testing is complete, they will fax the results to my transplant Case Manager and mail a copy to the person tested. The results will not tell the potential donor if they are a match or not. Someone from my transplant center will need to review the results and notify anyone who might be found to be a match. The testing takes between 7 - 10 days. When someone tests privately for someone else, they are not registered in the the Be The Match Registry for possible matching to someone else.

Be The Match Registry
According to the FAQs about joining the registry:
When you join the Be The Match Registry, you make a commitment to consider donating to any searching patient who matches you. As a volunteer, you are never under any legal obligation to donate and your decision is always respected. However, because a late decision not to donate can be life-threatening to a patient, please think seriously about your commitment before deciding to join our registry.

You can request a copy of your own testing results after you join the Be The Match Registry. However, if you want to be tested only for a specific patient, you will need to have your testing done privately.
When I called the Registry, I was told that 75% of the time donors are matched with patients who need stem cells (from blood) and 25% of the time donors are matched with patients who need bone marrow. A bone marrow donation requires surgery, so it's important to review the website thoroughly before registering. The testing process is the same as with private testing. Once someone joins online, a test kit is sent, which can be sent back free of charge. The Registry will ask for a donation to cover expenses and administrative costs. When a copy of the results come back to the donor, that person can fax them to the Case Manager on my transplant team and she will review the results to see if they are a match for me. My Case Manager is Christina DaCosta and her contact information is 201-996-5877 tel, 201-996-5691 fax.

According to my doctor, Scott Rowley, who is the Director of the Transplant Program at Hackensack, there are 19 million people who are giving, brave and altruistic enough to register for this international program. I find that incredible and amazing. Yes, once the mouth swab test is submitted, it's pretty unlikely that any one person is going to be a match for someone, but still. It's nice to think about 19 million people volunteering for something that could save lives, especially when the world is so full of bad news.

In the meantime, I'm riding the wave of side effects from the chemo. Just when I start feeling better, I'm due for another purple, yes purple, bag of chemo cocktails. By mid next week I should feel better and hopefully be through with treatment. Then my counts will drop, just like before, and I'll cross my fingers that I won't get any infections.

On the bright side, maybe I'll get to see the leaves turn after all. From my 8th floor room in Hotel Hackensack, my window looks out over trees and the western towns of Bergen County. If there are clouds in the late afternoon, I can even catch a sunset. Things are not so bad.



Wednesday, September 15, 2010

Nurse BP

My first night at Hotel Hackensack was memorable to say the least. I didn't "check in" till almost 6:30, after a very long consult with the transplant team, hospital admission procedures, and waiting for my recently vacated room to be cleaned. By the time I ate dinner and unpacked, I was pretty beat. I took an Ambien to help me sleep (I've been a little stressed out lately), and by 9:30 I was barely able to stand up.

The night nurse came in at about 10:00 to do a full assessment of my medical history. As I remember it, there had to have been hundreds of questions. I nodded off at least 5 times and the nurse -- I'll call her Nurse BP for reasons that will soon become clear -- kept nudging me awake. No, I don't have a pacemaker. No, I don't have removable teeth. No, no one is beating me at home....

Finally, the assessment was over, and I could sleep. Then she took my blood pressure. It was 80 something over 50 something. This was very disturbing to Nurse BP. She took my blood pressure 3 more times. Same results. She just kept staring at the machine. She sat me up and took it again. No change. By this time, I felt like a wet noodle. "It's because of the Ambien. And my blood pressure always runs low. It's no big deal," I tried to explain. Then she wanted me to stand for a minute, have another reading, lie down, have another reading, stand again, and so on. No freakin way. "Tomorrow!" I begged. She finally left at 11:15.

At 3:30 a lab technician barged in and threw on the overhead lights so that he could draw my blood. I thought I'd been dropped in a baseball stadium. That would have been the time to take my blood pressure. Instead, just when I had fallen to sleep again, the nurse's assistant came in at 4:30 for, you guessed it, more blood pressure readings.

With the exception of a rather frustrating night, things are going well. I'm in a very nice room, on a newer, pretty fancy floor with "In Room Dining" service, complete with delivery staff dressed like restaurant servers. I had all my tests and pre-chemo procedures today, and I will start treatment tomorrow. The side effects and toxicity levels remain to be seen, but I've been through it before. I can take it.

I have a new appreciation for Greenday's song, Wake Me Up When September Ends. Unfortunately, no amount of Ambien will allow for such a luxury at Hotel Hackensack.



Wednesday, September 8, 2010

Another Lost Fall

I love the seasons on the East Coast. Just when Summer bakes us a little too long, a crisp wind teases us with the promise of brilliant colors everywhere. Fall is my favorite season. But it's a bittersweet season for me. Whenever I get bad health news, it's always in the Fall. Unfortunately, this year is no exception.

I went for a bone marrow biopsy the day after I returned from my trip to Arizona. I found out late last week that the test did not deliver good results. I am no longer in remission. Dr. Forte sent me for a consult with Dr. Stuart Goldberg, Chief of the Leukemia Division of the John Theurer Cancer Center at Hackensack University Medical Center -- the number two rated blood treatment and transplant center in the country. I met with him yesterday, and learned that I will need more chemotherapy to get back into remission before proceeding with a transplant.

Chemotherapy regimens for relapsed Acute Myeloid Leukemia (AML) are complicated. The transplant process is completely mind boggling. By the end of the consultation, my brain hurt. The plan is for me to meet with the transplant doctors next Tuesday, after which I will be admitted to the hospital to begin the chemo treatments. I'll be in the hospital for about a month, and then recover at home until a match is found for the transplant. The transplant process, once I'm in remission again, could take 4-6 months.

This has been a rough week, to say the least. I still can't believe this is happening, after everything I've battled so far. It's like a final surge that one hopes will end the war. I hate to think about going back into battle so soon. And I'm devastated that I'll be on medical leave from work for so long again. Physically, I feel fine, although I know my blood counts are dropping. It's only a matter of time before I would end up in the ER. The foreshadowing of my previous post, The Suitcase, is downright creepy.

Although this will be my biggest fight yet, I've overcome worse obstacles. Fighting cancer has become my thing, my talent. I can't sing, cook or play sports, but I sure can fight cancer! I'd like to fight it in a public service kind of way, not as a patient anymore.

I've said it before, and I'll say it again: Hug your kids, kiss your parents, goose your spouse and give your pets a big squeeze. If you've always wanted to go somewhere, go. If you've always wanted to do something, do it. Life is too short and it could change drastically in an instant.

If I'm lucky, I might get to see some Fall colors from my isolation room in Hackensack. But if I don't, there's always next year.



Tuesday, August 24, 2010

The Suitcase

I consider myself a student of Life. I’ve read many of the spiritual writings of the day: Marianne Williamson on The Course in Miracles, The Secret, Echart Tolle’s The Power of Now, and Conversations With God, Books 1, 2, 3 and then some. I know about the Law of Attraction. I know that Thoughts are Things. I know what I should be doing: focus on the gifts of Now; choose love over fear, breathe, look for the beauty (and I would add humor) in each of life’s experiences, etc. You would think that I would know better than to jump to the “Oh my God, I’m relapsing”conclusion when every little physical discomfort pops up. Easier said than done.

My hospital suitcase, always packed and ready for a crisis, was a blue duffel bag on wheels that, over time, began to fall apart. The handle was busted and the fabric was wearing out on the bottom. I vowed that when I was well enough to return to work, I would throw it away, ridding my world of the sick leukemia energy buried within. When I returned to work, I was so busy, I forgot about the suitcase.
I was tidying up one night last week, preparing for my cleaning lady to come the next day (why do we do that anyway?). I open a closet and there it was – the suitcase. Ugh, that! I pulled it out and put it by the door to throw away the next morning.

I went to bed feeling uneasy. I had had a surgical biopsy the week before – just ruling out yet another possibility for yet another type of cancer. The procedure had gone fine, but I was bleeding more during the second week than I had during the first. "This doesn't make sense," I thought." I woke up around midnight feeling nauseous and awful. “Don’t panic,” I told myself. "Just because I have two of the four terrible signs of impending relapse (bleeding, GI trouble, bone pain and fever), there’s no reason assume the worst." So I laid in bed, trying not to think bad thoughts. Sure, that works. “I can’t go through that again. I’m leaving in a week to move Dad into assisted living in Arizona. I’m in the middle of too many projects at work. I just bought all this great summer fruit and a tons of berries, which I won't get to eat. Damn!” And so on. I decided to wait till morning and go straight to Dr. Forte's office. By this time, I was convinced I was relapsing. There was no other explanation.

I dosed for a couple of hours. Sadie tried to console me with her purring. I woke up at 6:00 feeling even worse; I showered, dressed and started toward the closet for a suitcase. And then I saw it: the evil hospital suitcase, propped against the front door, ready to be tossed. I froze. I must have stared at that blue suitcase for a full minute, my heart racing. It felt like a battle of wills. Eventually Sadie broke the spell, pleading to be fed. I took the suitcase outside and pitched it in the dumpster, a little too loudly. I had won.

I packed a different suitcase, drove to Englewood, had my blood drawn, and waited. As soon as the coast was clear, I stole my blood results from the stand outside my exam room and exhaled. My counts were better than last month. All was fine. Dr. Forte came in and said that, even under the microscope, no rogue cells were found. “Sometimes a cell or two will fall off the assembly line and the spleen hasn’t come around yet to pick them up. But you had none of those, not one. It’s probably just stress. You should take it easy.” Note to self: relax – I’ll put that on my To Do list for after Dad’s move to assisted living. I drove to my surgeon’s office, and asked about the bleeding. He said, “That happens sometimes. Everything looks fine.” (It would have been nice to have a heads up on that. By the way, the pathology report for that surgical biopsy was negative for cancer.) I drove back home, took a nap, unpacked the “benign” suitcase, and started to feel better.

What was the lesson in all this? Well, there were many. I was reminded of the value of faith, the ease with which fear overtakes logic, and power of symbols. The blue hospital suitcase was a test. Such tests merely measure what we have learned. I’m tempted to be hard on myself for momentarily forgetting all my spiritual readings. But that would defeat the purpose, now wouldn’t it? Life is a classroom. I just had a hard day at school.



Friday, July 9, 2010

My Own Version of Fireworks

June came and went as fast as fireworks explode and disappear. It was great to get back to the firm, working again with the people who gave me so much support. When I paused to catch my breath, it was the 4th of July -- a time for family, friends, BBQ and red-white-and-blue cupcakes. Almost as soon as I returned home from a grand fireworks display, I headed out on I95 toward Johns Hopkins to see Dr. Georgiades for another PET/CT scan. I now have a juggling act to maintain, making sure that cancer no. 2, Acute Myeloid Leukemia (AML) doesn't stir up cancer no. 1, Adenoid Cystic Carcinoma of the Breast (ACCB). This was a trip to check on cancer no. 1.

In late April, my last PET scan showed a "hot spot," which did not show up on the CT part of the test. Since there was no good explanation for this discrepancy, we decided to repeat the test in 2 months. I could feel myself getting weary, thinking about having to have another radiofrequency ablation (RFA) so soon after finishing treatment for leukemia. But my spirits were lifted as soon as Dr. Georgiades entered the room. He usually comes in with copies of images from the PET/CT, hot off the radiologist's digital griddle. Or he comes in with drawings of my lungs, showing spots where previous tumors have been killed, along with sites of untreated tumors. This time he was empty handed. The hot spot had disappeared, and nothing was lighting up anywhere! No evidence of cancer -- only the same few little ditzels that haven't changed in the 2 years I've been going to Hopkins. I don't have to go back for another scan until January. I'll always need to be followed because cancer no. 1 grows so slowly. It's been known to show up after decades of dormancy. But I can't complain about that. At least we can see it coming and zap it in its tracks.

Driving back from Baltimore in 105 degree heat, as the fireworks were going off in my head, my heart, and my ex-disease ridden lungs, two things occurred to me: 1. Killing metastatic tumors often results in more tumors growing back, sometimes more aggressively. Cancer finds new pathways when the old ones are destroyed. That hasn't happened to me.  2. Having my bone marrow completely destroyed by tons of chemotherapy may have easily triggered any remaining lung metastasis to become active. Without an immune system, it stands to reason that another lingering cancer that doesn't respond to chemotherapy would have had a field day. That hasn't happened either.

I'm tempted to have a party! Oh, but wait. The last time I had a party to celebrate good PET/CT results, I was diagnosed with leukemia 48 hours later. My next milestone will be next month, when I will have another bone marrow biopsy. Unfortunately, these quarterly stabbings are the only way to confirm remission. Until then, I'll celebrate the simple things in life, like my cat, Sadie, and all her feline antics. And Snowball, the dancing cockatoo. I love Snowball. He dances like there's no tomorrow.  I learned of him on CBS Sunday Morning, and I think he's my new best friend. My favorite performance is Another One Bites the Dust, but he also takes the music of the Backstreet Boys, Lady Gaga and Stevie Nicks to a whole new level.  I wonder what Sadie would think of Snowball.  And another version of fireworks is born...



Tuesday, June 1, 2010

"Have a little faith, there’s magic in the night…"

That one line from Bruce’s Thunder Road says it all. I heard late last week that I am still in a complete molecular remission – no inversion 16 markers for leukemia 2 months in a row following the end of treatment! Not only that, but my blood counts seemed to have recovered too! It would have been awful if I achieved a complete remission only to learn that I had permanently damaged my immune system. So yes, there is magic in the night. And yes, faith deserves a lot of the credit. But so does the power of prayer, a great team of doctors, a big dose of luck, and all of you who have stood by my side.

There’s no way to do a Google search and find research that will tell me how to allocate credit for my good fortune – how much weight to give faith, prayer, medical expertise, luck, an incredible network of loved ones, determination. All I know is that I was fortunate to have all these on my side. I dodged another bullet. No, a cannonball!

Today was my first day back to work in 7 1/2 months. It feels great to return to my pre-leukemia life, and I'm so grateful that I can pick up where I left off. The people at my firm have been amazing to me. Among the many, many things on my list of blessings, they are at the top.

Like Bruce, I believe in faith. I believe in magic. I believe in Better Days:

Every fool’s got a reason for feelin’ sorry
for himself
And turning his heart to stone
Tonight this fool’s halfway to heaven
and just a mile outta hell
And I feel like I’m comin’ home…

These are better days
These are better days it’s true
These are better days
Better days are shining through



Sunday, May 16, 2010

A Little Ditty on Death

Nothing clears a room faster than the topic of death. But when you've flirted with it as much as I have, you can't help but formulate a few thoughts. I revise the playlist for my memorial service every time someone tells me, in some form or another, that I'm going to die. Then something happens that reverses that prediction and I stop my preparations for what promises to be a kickass service.

Now that my future is looking bright again, I think about what I've learned in this last fight. For one thing, I'm more comfortable with death. Or maybe I'm becoming desensitized after so many false starts. I now notice ways in which our society promotes crazy notions that assume we can avoid this inevitability. The truth is, we begin the process of dying the moment we are born.

Many countries face death and the process of dying as just another part of the Circle of Life. But modern society has demonized this inevitable step, maybe because we've scrambled the notion of death as a fact of life with the ways in which many people die. We have created horrible, tragic ways of taking (and wasting) life that didn't exist generations ago -- drug related deaths, senseless shootings, natural disasters brought on by global warming, not to mention higher disease related deaths caused by crappy diets and the lack of exercise. So we invent ways to cheat death instead of addressing the causes of so many fatal problems. Then we lay the blame at death's door, instead of seeing the irony of such flawed logic.

The task then becomes making sense of senselessness. I've learned that this is the fastest way to make yourself crazy. There is no making sense of something like cancer, because, by definition, it's senseless. We created the beast. So believe me, I'm no stranger to the possibility of a senseless reason for dying. But that's not death's fault.

For me, the challenge is to find a balance between being prepared for whatever may happen and having faith that I'll live longer than any actuary table would predict for someone with my medical history. It's tough. Having two unrelated cancers means I have to muster up twice as much strength to combat the temptation to occasionally visit what I call the Dark Side. You know what I mean -- that knot in your stomach when you think about your own mortality.

I've developed a few ways to beat back the Dark Side. One is to remind myself that death is not the worst thing that can happen. Not making a positive impact in some way, to me, would be an outcome far worse than death.

When I venture close to the Dark Side, I think of two people in particular, not because of the way they died, but because of the way they lived. One is my friend Phyllis Cardinale. Phyllis was a member of my first cancer support group, and was the main reason I kept going back. I only knew Phyllis for about a year, but she left quite an impression. She had a great sense of humor and faced her death with grace, dignity and wisdom that I never forgot. She was responsible for leading me to Dr. Forte and to my close friend, Elissa. (Phyllis also worked as a paralegal in my law firm in the late 70s.) Phyllis was a fighter, undergoing 6+ years of treatment for breast cancer, including a stem cell transplant. She named her wigs, according to her moods, and wore them as sassy accessories. Elissa took her shopping, in her wheelchair with her oxygen, just a few days before she died. She wasn't the type to sit around -- not if she could squeeze a little more life out of each day. Phyllis reflected on her approaching death with curiosity, hoping she might be able to somehow know that her family would be okay after she was gone.

The other person I call on for guidance is my maternal grandmother, Natica Seger, aka Grandma Tootsie. Toots was a tough Swede, a staunch Democrat, and a role model for balancing her independence with complete devotion to her husband, Victor. Saying goodbye to Tootsie when she was dying of ovarian cancer was one of the most profound moments of my life. She was sweet, wise beyond words and at peace. Her sadness at having to say goodbye to people was tempered by anticipation for meeting up with my grandfather and her parents. In her last days, her fiesty spirit surfaced when she would wake up sputtering, "Oh, sleep is such a waste of time. Let me tell you some more stories while I still can." Whenever something happens to bring the Dark Side closer, I think to myself, "What would Phyllis do?" Or, "What would Tootsie say?" That, to me, is leaving an impact.

Another way I fight the Dark Side is to focus on the advantages to having a heads up on the way I might die. Knowing what's coming, I'd be able to figure certain things out, depending on the circumstances. I kind of like the idea of having a pre-death memorial service. I envision such a great party, I would hate to miss it. I wouldn't have all those growing old fears that hover closer as we age. I'd control as much as possible, which is important to control freaks like me. I'd make sure to express my love to all who have given so much to me, which I try to do now. I would also make it known that if anyone says that I "lost my battle with cancer," I will lovingly smack them from whatever dimension in which I happen to be residing. (See my August 30, 2009 post, "Does Anyone Really Lose Their Battle With Cancer?) Perhaps the biggest lesson I've learned is to control what I can and let go of the rest. Letting go leads to peace and peace leads to happiness.

I had been putting off writing my thoughts on this subject, but was inspired by my friends Michael and Georgette McHale, who offer the world their loving insight, strength and humor. Thanks to both of you for choosing love over fear.



Thursday, April 29, 2010

Sometimes we don't really notice just how good it can get.

Rob Thomas' lyrics to the song Someday express the relief and gratitude I've been feeling in the last week or so. My March Madness finally came to an end when I was finally released from Englewood Hospital on March 29th. Yes, all my blood counts, including those stubborn neutrophils, finally came back and are now showing off as normal. That was almost as much of a relief as my next bit of news: The results of the April 16th bone marrow biopsy showed a complete molecular remission - no sign of leukemia or leukemia markers (like the inversion 16 chromosome) at the genetic level! No more chemo! It looks like I'll be able to keep the Gold Medal that the Universe loaned to me when I had my first molecular remission in December. I am happy beyond words and once again feel as though I've been spared a terrible fate. I have also come to appreciate how happy news like this is for Dr. Forte and other committed doctors who work in cancer fields. He told me that outcomes like this are why he is an oncologist.

We agreed that, to be sure of this remission, I should have another bone marrow biopsy in 5 weeks (scheduled for May 20th), after which I can resume my pre-leukemia life. Of course, nothing will be completely the same after such an ordeal. But feeling good, not anticipating illness, and getting back to work will do wonders for my psyche, which, by the way, has survived the wounds of battle and is happy for each new day. That's the scoop for cancer no. 2.

As for cancer no. 1, the Adenoid Cystic Carcinoma of the breast, ACCB, with lung metastasis, I'm doing pretty well there too. I went to Johns Hopkins for a PET/CT this week and there is only one questionable lesion that needs to be watched. One "hot spot" in my right lung lit up on the PET scan, but didn't light up on the CT scan. This is unusual, as CTs are more detailed than PETs, and the area on the CT is vague and undefined. It would be tricky for Dr. Georgiades to ablate with radiofrequency ablation (RFA) because the procedure is CT guided and he needs clearly defined margins to get the entire lesion. We decided to repeat the tests in June to see if there is any change. The other possibility, although remote, is that it's leftover pneumonia from my chemo complications in January. The suspected lesion isn't growing, so there's no harm in making sure it's really cancer before ablating.

[The PET actually showed a second hot spot on my lowest left rib. This was a total mystery because it also did not show up on the CT. Dr. Georgiades thought that this might be inflammation from a cracked a rib because I was sore from working out for the first time in 6 months. This made sense since chemotherapy weakens bones. It turns out that a tiny drop of the radioactive isotope that is injected before the PET/CT somehow got on my skin and showed up as another lesion. Because it was so odd, given my history, Dr. Georgiades investigated the finding with the PET radiologists and discovered that the isotope was outside my body, not inside. He called me today to tell me that this hot spot has been re-designated as "contamination," and not to worry. He's awesome.]

The bottom line is that one small lesion, whether it's new or residual from a previous ablation, is not that big of a deal. It could be a lot worse. Although this was not a totally clean PET/CT, I'm not really concerned. I've reached the point where having to have a tumor burned out of my chest presents more of a scheduling challenge than it does fear of additional cancer. Funny how that attitude has evolved. The leukemia adventure presented so many potentially life threatening challenges that somehow I was able to overcome, I started imagining myself as Jack Bauer on 24. That guy just keeps getting up. With the help of my medical team, I've been able to make it to the end of the day.

Sometimes we don't really notice just how good it can get. At this point in my life, believe me, I've noticed.



Friday, March 26, 2010

March Madness

This month has been a mixed bag, kind of like our weather lately. Of the past 26 days, I've been in the hospital 16 of them, and I'm still here. I'm waiting for my neutrophils (a type of white blood cell) to go up -- which is like waiting for grass to grow -- and when they do, I can go home.

It took about twice as long for my immune system to recover from the second consolidation treatment earlier this month, even though I received 40% less chemo. This, I learned, is because my bone marrow took a permanent hit from the chemo I received 10 years ago (the completely unnecessary chemo that probably caused this leukemia in the first place -- but I'm not bitter).

This month, my counts crashed around the 15th, and because I had a bad head cold, Dr. Forte admitted me to the hospital, knowing that the cold was likely to cause some offshoot infection. I was in the hospital for 5 days, and after my head cold got better and I wasn't sick with anything, I was released last Saturday. After enjoying a night at home with Sadie and a little of that awesome weather, I got really sick on Sunday and drove back to the ER. I had a fever, chills and that terrible bone pain that I get when my bone marrow is empty. Like a bad rerun, I had an infection in my stomach that went into my bloodstream and I was back on IV antibiotics faster than you can say "morphine, please."

[By the way, I think I hit on the over-the-counter trifecta for head colds. If Zicam, Tylenol Sinus and Mucinex, taken religiously, can help me get over a head cold when I have no immune system, they get my vote.]

Because it's taking longer to recover with less chemo, the treatment plan has changed. I'll have another biopsy in a couple of weeks, when there's something substantial to look at, and if I'm still in complete remission, we'll call it quits on the chemo. (Sweet!) Then we will re-test in a month, and if things are still good, I will be finished with treatment, having achieved the best possible outcome. (More than sweet!) If there is any sign of the inverted 16 chromosome, the leukemia marker, then I'll have one more treatment with even less chemo than last time. The danger is that my bone marrow may never completely recover. But that's not going to happen. If there was no sign of inversion 16 in December, and I've had two aggressive treatments since then, I think it's safe to assume that this ride may finally be coming to a stop. Of course we won't know that for sure until we get the results of the second biopsy, probably sometime in late May.

In the meantime, I'm willing my neutrophils to bounce back, cautiously optimistic that this is may be my very last hospital stay. Since October, I've been in the hospital for a total of almost 3 months. But it's not as bad as it could have been -- not by a long shot. I'm happy that it's Spring. It's like a clean start. Last Fall was one big dark blur, and Winter was stormy in so many ways. I look forward to getting my strength back and appreciating all that Spring has to offer. It's a time of growth, renewal, beauty, community and, as always, gratitude for countless blessings, including all of you.

Happy Spring!



Sunday, March 7, 2010

Consolidation Treatment: Two Down, One or Two to Go

It looks like I picked a good week to be in the hospital, or rather, an even better week to get out. Last week was the big thaw from the winter blast, cold and rainy. I came home yesterday from my second week-long chemo treatment of this consolidation phase, and today I was able to take a short walk and drink in a little sun. What an often overlooked treat it is just to get outside for a bit. There's nothing like being in the hospital for a week to make you feel like a sick person.

The week went pretty much as expected -- Sick on the days of chemo (days 1, 3 and 5) from all the poison and pre-medications, a little better on the off days. My recovery was faster this time because I was only given about 60% of what I got last time. Hopefully, that will prevent my counts from bottoming out completely, leaving me vulnerable to things like pneumonia (don't need a repeat of last month!) and other infections. Of course my counts will drop in about a week. That's the point of decimating my bone marrow with poison every month. But hopefully, all I will need are some transfusions to get me through days 14-21 when things are likely to be the hardest. After that, it will be time for another bone marrow biopsy in order to run some super sophisticated DNA tests to see if any markers for leukemia show up (like the upside down chromosome, known as inversion 16). If not, then I'll only have to have one more treatment. At most, I'll have to have two.

I know I shouldn't get my hopes up for just one more treatment, but it's too late for that. I really have to steel myself to pack up my suitcase and back up food supplies, arrange for being away from my kitty, Sadie, and prepare myself for a week of feeling like crap. Even watching TV isn't an appealing diversion. They always mount the TV too high, so it's uncomfortable to watch for very long. There's a guide to tell you what channels are offered, but not what shows are on and the times. And worse yet, no TIVO or DVR to fast forward during commercials. My only hope is to catch an E-Trade baby commercial. I could read or watch DVDs on my computer, but only if I'm well enough to sit and remain conscious.

And the food. Don't get me started. Depression sets in when they bring the menu for the next day. I'm so glad to be back to my fresh berries, real salads, and soy ice cream with crushed pecans (a nightly ritual). For all my complaining, I have to remember that these hospital stays are necessary and will keeping me in remission, hopefully forever. And they make coming home to Sadie all the better. Now that she's approaching her first birthday next month, she's in her rebellious teenage years. It's quite entertaining, and somewhat distressing, to see what mischief she uncovers over the course of a week. Yesterday I discovered some crooked display plates on top of my kitchen cabinets, just below the ceiling. How in the world...?

Most importantly, coming home means that one more treatment is over. Spring is almost here, time is passing (both quickly and slowly, it seems), and I can now see the light at the end of this unthinkable tunnel. As I watch the news every night, I can't help but realize how lucky I am to have an end to this tunnel. So many people don't. Life is good (Pura Vida!), but life is hard. For some people it seems to be filled with tragedy, punctuated with periods of happiness. For those of us who are blessed with more, we owe it to those people to live as hard as we can, while we can. It gives new meaning to taking in a little sun on a Sunday afternoon.



Wednesday, February 24, 2010

"If Not Now, When?"

There hasn't been that much to report lately. For the past month I've been focused on getting stronger, waiting for my counts to climb high enough to schedule the next chemo treatment. Today Dr. Forte and I agreed that it's time to get this show back on the road. I'll go back to Englewood on Monday morning, getting treatments on Monday, Wednesday and Friday, and then come home on Saturday. Since I've felt much better the last couple of weeks, I've been seeing friends, running errands, going to yoga classes, and I've been reading.

I just finished a book by Colonel Jack Jacobs called, If Not Now, When? Duty and Sacrifice in America's Time of Need. Jack is my friend Elissa's brother. Elissa, by the way, is not just a friend. She is a really good friend. Anyone who brings you home made soup at the hospital, picks up your dirty laundry and delivers it the next night all clean and folded is a good friend.

Jack is one of less than 100 living recipients of the Medal of Honor -- the nation's highest decoration for bravery and valor in battle. He was decorated by President Nixon for saving over a dozen soldiers during a fierce battle in Vietnam after sustaining numerous head injuries. Jack is now a well known military analyst for NBC/MSNBC who has appeared on countless news broadcasts and in documentaries. You would probably recognize him if you saw him. It seems that he's on TV every 5 minutes, as the media tries to make sense of the numerous military actions in which we are involved.

[I know what you're thinking: Kathy read a book about what? I never, for a nanosecond, thought that I would ever read a book about war, the military, or patriotic service. If I had a nickel for every anti-war protest I attended, participated in or actively helped plan during the 80s when I lived in San Francisco.... But hey, this is a book by my friend's brother, and she said that it was peppered with humor. So I downloaded it to my new Kindle, which Elissa and her husband gave me shortly after I got sick.]

Jack is an understated, wise, friendly guy with a sense of humor that is both charming and irreverent. His story of perseverance and courage in the face of fear and overwhelmingly bad odds, speaks to the core of the cancer patient's battle to survive.

The obvious parallel between cancer and war - the luck of the draw as to who escapes death - is perhaps the one that haunts me the most. I'm in my third battle against cancer. Yes, I'm in remission, but it’s a never ending battle. Metastasis is forever. And remission is a state that can change at any time. Nevertheless, I plan on winning, like every soldier who is drafted into war. But again, it's the luck of the draw, and cancer is arbitrary.

Although I am determined to win, I’m not unique. Most cancer patients with a fighting spirit say the same thing. Yes, it takes courage to adopt a fighting spirit in the first place. But, to steal a quote that Jack uses in his book:

Courage is the art of being the only one
who knows you're scared to death.
--Harold Wilson

Is it luck, fate, the will of God or some other unidentifiable force that determines who wins or loses? Since there's no simple answer to such a loaded question, our efforts are better spent celebrating all that we have, rather than letting a war mentality become our frame of reference. But I think that Jack would agree that war changes a person. We're never the same after a major battle, and hopefully we're stronger and wiser for making our way through it. Each day becomes a gift and hopefully we remember the big picture, as expressed in another quote from Jack's book:

There is no cure for birth and death,
save to enjoy the interval.
--George Santayana



Sunday, February 7, 2010

Wasn't Expecting That!

On day 21 of consolidation treatment no. 1, I crashed, hard. I woke up on Sunday, January 24th feeling weak and full of aches in my legs and back. I called the weekend on-call doctor, who said to come in. Shortly after friends brought me to Englewood, I became quite sick and began treatment for an oral infection and a fever that signaled what soon blossomed into pneumonia. That began a very difficult week of incredibly strong antibiotics that kept me from eating for 5 days and gave me some pretty creepy hallucinations. It was a bad week. By the next weekend, I had turned the corner on the infection and pneumonia, but within a few days I gained 23 pounds in water weight, which was exceptionally painful for someone who had barely eaten and weighed 100 pounds when admitted. Medical knowledge of antibiotic side effects is still at the most elementary, experimental level. No one knows what causes what, especially when drugs are combined and are being switched out as treatment goes on.

The good news is that my bone marrow, which was totally empty when I crashed, recovered fairly quickly and I was able to come home last Tuesday. I've had a lot of muscle pain due to low potassium, so my recovery has been slow. But I'm getting better every day. Thankfully my cousin, Mary, came from Pittsburgh again to be my advocate, cat sitter, personal assistant and overall angel. She helped me get home and settled before going back to her busy life. Once again, everyone rallied for me and I believe this played a huge part in getting through this set back.

Dr. Forte said that there wasn't anything I could have done differently to avoid what happened. In spite of the carefully calculated dose of chemotherapy for my height and weight, the dose was just too much. Treatment no. 2 will be significantly less, which will give me a better chance of getting through the crash without another hospital admission. Although I had visited with some out of town friends in the days prior to getting sick, infections from a suppressed immune system don't usually come from other people -- they come from my body's inability to colonize white cells to defend against bacteria within my own body.

On the bright side, any lingering leukemia cells had to have taken a major hit with this last adventure. Dr. Forte said that my slides look perfectly healthy, and no one would be able to tell that I ever had leukemia. Looking at the big picture, he said, we're winning the fight for permanent remission. I can't ask for anything better than that.

When I go for treatment no. 2 depends on how quickly I recover. I'll know more on Thursday when I go in for a check up. Now I'm just looking forward to getting back on track and watching a good Super Bowl game tonight. I'll be routing for the underdog, the team whose city has been through hell and back. I guess that goes without saying.

Thank you, as always, for your love and support.



Tuesday, January 19, 2010

Chemo Brain

I am living, breathing proof that Chemo Brain is real.
For many years cancer survivors have worried about, joked about, and been frustrated with the mental cloudiness they notice before, during, and after chemotherapy. We don't know its exact cause, but this mental fog is commonly called chemo brain.... Even though chemo does not seem to be the only cause, studies have suggested that up to 70% of people who get chemo will notice symptoms of chemo brain.
Here are two very recent examples of why it may be a good thing that I'm not working while I'm in treatment:

Yesterday, as I was driving through Englewood on my way to a check up (and what turned into a very long day of transfusions) I thought to myself, "Englewood sure has a lot of... what are they called? Car stores? No, that sounds stupid. What the hell are they called? Auto shops? No, that's not right. What are they???" And for a minute I could not find the right word no matter how hard I squinted. Finally, my brain cells teased back the word, "dealers!" which I shouted to myself. My next thought was, "Oh boy. I'm in trouble."

Today I pulled out a can of what I thought was organic pumpkin soup from my favorite store, Trader Joe's. I wasn't terribly hungry, but the clock said it was time to eat. I heated up the soup, thinking, "This is pretty thick," only to then realize that the can said "organic pumpkin," not "organic pumpkin soup." So now a I had hot pumpkin in a bowl. What to do? I decided to force the pumpkin soup idea, and I added a bunch of almond milk. Too bland. I added a bunch of curry powder. Curry pumpkin soup sounds yummy. Too bitter. I added blue agave nectar for sweetness. Too weird. So I added a bunch more spices. No telling what I pulled out of the cupboard. By now I had volumes of this stuff, but I was determined not to let Chemo Brain win. The final mixture was edible, but the best part of the meal by far was the crackers I added at the end.

This reminded me of another squash debacle I had when I was in my mid 20s. I had just moved by myself to San Francisco and was amazed by all the new and odd looking produce. Growing up, family meals never really ventured too far out of the box. When I got to California, there must have been a dozen different types of squash (and artichokes totally baffled me). I picked one and found a recipe for stuffed squash. It said to bake the squash whole and then cut it to add the filling. As it was baking, it smelled strange. I called my mother in Scottsdale, described the "squash," and was crushed to learn that I had just baked a honeydew melon. There was just no way to salvage hot melon.

I think this was when I gave up on recipes and developed my skills as a Warmer/Arranger. I follow my rather strict anti-cancer diet by finding healthy, yummy foods at Trader Joe's, Whole Foods and sometimes restaurants, warming them up and arranging them tastefully on my plate. It's a system that has worked quite well for me ever since the hot melon incident. Until today.

I had an impressive case of Chemo Brain after I received 8 completely unnecessary rounds of CMF chemotherapy in late 2000 (see January 17, 2010 post). It improved with time, but my memory is still pathetic. Now I'm told that leukemia cells can hang out undetected in the central nervous system, and because of this, the chemo that I'm receiving, Ara-C, is specifically designed to cross the blood brain barrier. Great. I still have three rounds of very high dose Ara-C to get through. Good thing I have a GPS. Now if I can only manage to locate basic vocabulary words and read food cans.... Hopefully, this blog won't turn into gibberish.

Never mind the fact that I baked a melon in 1985 and I wasn't diagnosed till 2000. I intend to use Chemo Brain as justification for all present and future humiliating fumbles. Why? Because science has my back!



Sunday, January 17, 2010

How Did This Happen? Some Theories

The question, "How the hell did I get leukemia after beating a completely different cancer twice?" bounces around in my brain on a daily basis. Now that I've lived with this diagnosis for 3 months, I've settled in on a few possible explanations.

Theory No. 1
The obvious question is whether the first cancer, Adenoid Cystic Carcinoma of the Breast (ACCB) is related to the second, Acute Myeloid Leukemia (AML).

On October 13, 2009, the same day that Dr. Forte found something terribly wrong with my routine blood tests, and only 6 days before I was diagnosed with AML, I received an announcement about a huge research breakthrough from the Adenoid Cystic Carcinoma Research Foundation (ACCRF). A new cancer gene was found by researchers at the Sahlgrenska Academy in Sweden:
The gene causes an insidious form of glandular cancer usually in the head and neck and in women also in the breast. The discovery could lead to quicker and better diagnosis and more effective treatment....

The research group can now show that the gene is found in 100% of these tumours, which means that a genetic test can easily be used to make a correct diagnosis.

“Now that we know what the cancer is down to, we can also develop new and more effective treatments... says professor Göran Stenman, who heads the research group at the Lundberg Laboratory for Cancer Research at the Sahlgrenska Academy. “One possibility might be to develop a drug that quite simply turns off this gene.”

The newly discovered cancer gene is what is known as a fusion gene, created when two healthy genes join together as a result of a chromosome change.

“Previously it was thought that fusion genes pretty much only caused leukaemia, but our group can now show that this type of cancer gene is also common in glandular cancer,” says Stenman.
That last point didn't seem as relevant to me on October 13th as it was on October 19th when I was told that I have leukemia. In fact, Dr. Forte told me after my first bone marrow biopsy that my cytogenetic tests contained fused leukemia cells. Maybe it's a coincidence, but I'm willing to consider the possibility that there's a connection between two seemingly unrelated cancers that are caused by fused chromosomes.

Theory No. 2
A simple review of the ACCB literature clearly demonstrates that chemotherapy is not recommended because ACCB grows too slowly to respond to chemotherapy. My first oncologist didn't take the time to research ACCB, and relied instead on a well known "expert on breast cancer" for my treatment plan. Together, they decided to treat my cancer "like any other invasive breast cancer," regardless of the fact that this was not typical breast cancer, but rather a glandular cancer. I was given 8 rounds of CMF, a cocktail of three drugs. One of these drugs, Cytoxan, is known to cause secondary cancers, the most common of which is AML. According to the American Cancer Society,
The cancer most often linked to chemotherapy as the cause is a type of leukemia called acute myelogenous leukemia (AML).... Studies of patients treated in the 1970s and 1980s have shown an increased risk of AML after certain types of chemotherapy drugs called alkylating agents were used to treat cancers like Hodgkin disease, non-Hodgkin lymphoma (NHL), ovarian, lung, and breast cancer.

Alkylating agents known to cause leukemia include:
cyclophosphamide (Cytoxan®)....
That "expert," when questioned in 2006 about the bad advice he gave my first oncologist in 2000, predictably denied ever recommending CMF. Needless to say, I switched oncologists and started going to Dr. Forte, who understood the nature of ACCB because he made time to do the necessary research. This is an example of why it's so important that we participate in the research process and not rely on one or even two doctors to decide something as life altering as cancer treatment.

Theory No. 3
From 1957 to 1975, Motorola Inc. used the degreasing agent trichlorethylene (TCE) to clean electronic parts made in its south Scottsdale, Arizona, plant. In early 1975, a significant amount of TCE had been dumped into the area around the plant and TCE had contaminated the groundwater. The area was identified as a Superfund site in 1983. My family moved to south Scottsdale, to the middle of the Superfund site, in 1967 when I was 7 years old. I lived there till I was 18. My mother, also a cancer survivor, still lives in that house. I'm told that the number of cancer cases in that area over the last several decades is staggering. (No liability was found in either the personal injury or the property damage class action suits.)

Research shows that AML can be caused by exposure to benzene, and there are plenty of lawsuits to back that up. Benzene finds its way into many Superfund sites because it's used in the manufacturing process of so many products. Who knows if growing up in the middle of the south Scottsdale Superfund site had anything to do with either of the chromosomal fusion-based cancers I've been fighting? It certainly didn't help.

Theory No. 4
All of the above.

Theory No. 5
None of the above.

The question, "How did I get cancer?" is one that haunts all cancer survivors. We wonder if there was something we did wrong, something we should have seen earlier. The fact is, cancer is random. It doesn't discriminate. All I can do at this point is focus on Theory No. 1 -- the new gene discovery that holds the most promise, hope for future answers and possible treatments for the cancers I've been dealt. In the meantime, we are obligated, whenever possible, to share our knowledge, our mistakes, and the resources we've stumbled across in our attempt to navigate these scary waters. Such is our task, as we put aside the question "Why?" and try to discover the good that can come from something so evil.



Thursday, January 14, 2010

Consolidation Treatment: One Down, Three to Go

It’s hard to believe, but there isn’t enough time in the day to get everything done. I had no idea I would be so busy on disability. On days when I don’t feel sick, there are doctor’s appointments or errands to run in preparation for my next hospital admission. Wednesday and today I went for blood work, fully packed and ready for anything. My counts are dropping, but not so low that I had to be admitted. I had a transfusion of platelets before leaving the hospital on Wednesday, so that’s one less thing to worry about over the next few days. Now if my white cells, red cells and neutrophils would just hang in there, I won’t have to go back into isolation. I'll go back for a re-check on Monday, and if I still feel well, I might be out of the danger zone for the rest of the month till my next treatment at the beginning of February.

I consulted with my biochemist, Nicholas Abrishamian of Chester, NJ, who tweaked my supplements so that I can boost my immune system, detoxify my liver from all the chemotherapy, and help me to stay as strong as possible. He believes that with the right vitamins, herbs, enzymes and other supplements, I can avoid, or at least minimize, getting sick when my counts drop the week after chemo. Dr. Forte has no objection to anything I've presented to him so far in terms of supplements and homeopathic remedies. He said today, "Researchers and doctors have to find a way to learn from each other," and I can't agree with him more.

My first round of consolidation treatment last week was not only punctuated with days of feeling awful, but it also included an experiment with the synthetic form of medical marijuana, Marinol (generic, Dronabinol). Marinol has been around for years, but its efficacy is questioned by many doctors, including Dr. Forte. Since I was still nauseous after taking the usual anti-nausea drugs, we decided to try Marinol for a day. It did nothing for my nausea or pain. The sleepiness and groggy feeling it gave me may have taken my mind off my symptoms, but it wasn’t strong enough to knock me out, keeping me from accomplishing anything productive. Spending the day in limbo just made me weaker and incredibly bored, longing for 9 p.m. when I could ask for an Ambien.

I was very encouraged to hear that New Jersey will join 14 other states in allowing the use of medical marijuana for patients with certain medical conditions. The NJ Assembly and Senate passed the New Jersey Compassionate Use Medical Marijuana Act earlier this week. Now patients with HIV, AIDS, cancer, multiple sclerosis, muscular dystrophy, ALS (Lou Gehrig's Disease), Crohn’s disease and other chronic or terminal illnesses, will have an option for pain management that many people believe is long overdue. My treatment will end in April or May, before the new law will be implemented, but by the end of this year, many people will be able to take advantage of this alternative. I’m told that patients who need medical marijuana for pain will not feel stoned, they will just get relief from their pain. If my experience with the synthetic Marinol is any indication, I’m sure that’s true. (I didn’t even get the munchies.) If it were otherwise, I suspect we would have heard reports from the 14 states that have already enacted similar laws. If we notice happier seniors in our nursing homes, it’s not because they’re high, it’s because they’re in less pain. Having another way to manage pain is a step forward. No one should have to suffer.



Tuesday, January 5, 2010

Back in Another Blue Room at Hotel Englewood

Returning to a community hospital for a week is like coming back to a cheap, somewhat sadistic, motel. I arrived yesterday for the first of four rounds of chemotherapy. I'm in a shared room, although my roommate left yesterday and I'm hoping I can avoid another "guest" in my new blue room. (It's not that I don't like people. I just don't like sick people in my space when I'm already sick and cranky.)

The layout of the shared room is different, but it's basically the same overwhelmingly creepy experience. I try to make it work for me, as we all do when find ourselves with less than comfortable lodging arrangements that we can't change. There is a "housekeeping" department. Someone answers (most of the time) when I call the "front desk." Room service? Hmmm. That's a stretch. Trays of food are delivered on a somewhat regular basis, but the menu is limited and includes a lot of jello. The linens are changed everyday, and "Guest Services," which is actually called "Guest Services," stops in to ask if my stay is comfortable.

Upon arrival, I complained about the squeaky bed, asked for an extension string so that I could control the overhead light, and called the diet office to register my food restrictions – no dairy, no red meat, bottled water with every meal. Then I rearranged the chairs (claiming the recliner for my side of the room, in the spirit of what many office workers do when someone quits or is fired), asked for a second table for my laptop, plugged in all my chargers, ordered TV service, unpacked my suitcase and my carefully chosen "Kathy hospital food" backpack, labeled my grocery bag for the pantry refrigerator filled with almond milk, protein drinks and V8 juices, and settled in. It was nice to get a warm reception from the floor staff. Lots of people were very friendly and helpful, and I'm now able to see their faces without masks.

Englewood Hospital is not a bad representation of such medical "hotels." It's actually one of the better models. Many rate much lower. For a Zagat rated hospital, "reserve a reservation" at the Marburg wing of Johns Hopkins Hospital in Baltimore. It's a 5 star experience, which is why celebrities and royalty pay big bucks to stay there. I know this only because the hospital ran out of beds one time when I had to stay overnight after one of the radiofrequency ablation (RFA) procedures. Until the staff figured out that I was a "non-paying customer," they sent in a food server wearing a tuxedo to take my Tea Time order. But she disappeared before I thought to ask for a crumpet. For the right price, you can order lobster or whatever you crave, and you'll be served your favorite meal on fine china. The furniture is expensive cherry wood, and there's a full service lounge for family members to use, complete with computers and yummy snacks. And of course, there are flat screen TVs. Since I wasn't a paying customer, I doubt if my nurse would have accommodated a request for a foot massage, as she did with the woman down the hall.

Back to reality in the blue room. The chemo doses during consolidation are much stronger than they were during induction. The side effects so far, headache and nausea, are equally more intense. Dr. Forte says that the trick is to find drugs for the side effects that don't cause different, and worse, side effects.

I'll be here until Saturday morning, getting chemo on a Monday, Wednesday, Friday schedule, which is turning out to be a pain in the neck. I had to have a bunch of tests and procedures after I was admitted yesterday, so we didn't get the show on the road till 1:00 p.m. The chemo runs for 3 hours and is then repeated 12 hours later. This meant that I got yesterday's second dose from 1:00 a.m. to 4:00 a.m. this morning. Thankfully, I can just sleep through it and hope that the drugs for the side effects last through the night. At least today and Thursday are days off.

Once I return home, I'll recover for about a week till my immune system crashes and something gives out. Either I'll get sick from a fever or some infection and need to be readmitted, or my blood counts will be too low, I'll need transfusions, and need to be readmitted. Either way, I'm likely to end up back in an all too familiar blue isolation room again, with masks, in the middle of January until my counts climb to a safe level. Maybe it's time to propose a Reward Points Program for Hotel Englewood. I could earn a year of leukemia free test results, which I would then convert to a permanent reward somehow. I'll put that on my To Do list.