One Step Forward...

I sat down to write an update almost two weeks ago, but ran into a few obstacles. Overall, the good news outweighs the bad, but it's been a juggling act. I've been on IV medicine twice a day at home for a flare up of a virus called CMV. We all pick up random viruses as we journey through life, many of which lay dormant in our bodies without us even knowing they're there. CMV is one of those viruses. Like mononucleosis, people may never get symptoms. It's passed on by transfusions, breast milk from a CMV+ mother, and being around other CMV+ people. Research shows that at least 80% of the population is CMV+. Somewhere between my treatments last year at Englewood and my treatments at Hackensack, I picked up the CMV virus. My donor is CMV-, so he's in the clear.

Stem cell and bone marrow transplant patients, since we're getting our entire immune system wiped out, are at risk for a flare up of CMV. In these cases, such a flare up can be bad -- very bad. Every week my CMV levels are tested, and on December 28th, the virus showed its ugly self. Aside from the hassle of giving myself IV infusions every day 12 hours apart, the medicine gives me severe headaches and stomach pain that have been getting worse and worse as time goes on. Because it takes time for the medicine to work, my CMV levels went up, way up, before they went down. Then they went up again. This week we switched to a different drug -- a 5 hour infusion once a week at the clinic. I'm feeling a little better, now that I have an arsenal of pain and nausea meds, so let's hope this drug does the trick. I'll need at least three more weeks of treatment before we can close this chapter in my recovery adventure.

About those pain meds. I don't like taking them, but I'm not one of those stoic pain sufferers either. There's good pain, like when you push yourself to get strong or exercise muscles, and there's bad pain, which is just bad pain. I believe that the body doesn't heal as well when there's bad pain, so if there are drugs that can take that away, all the better. The problem is, there can be painful side effects to the pain meds. I don't like how groggy and useless they make me feel, and I really don't like it when they don't work, but usually they do help, so I take them when I really need to.

All this came to a head the day after I released Zofia as my caregiver, of course. I paused to reconsider this decision, but not for long. There was nothing that Zofia could have done for me to make anything better or easier to deal with. I was happy to get my space back and it was a return to normalcy that I was ready for and needed. With my cleaning lady returning, Peapod grocery deliveries from Stop and Shop, and friends willing to run errands if needed, I'm all set. Plus, Zofia left me with meals for weeks, so food preparation is super easy.

Now for the happy news: Sadie's coming home this week! I bought an industrial respirator mask to wear when I clean her litter box, and took it to show my doctor. After giggling at me, he agreed that Sadie can come home from Pittsburgh. Mary and Sadie will arrive on Sunday and more normalcy will be restored.

Another happy thing happened last Monday, when I had the central line taken out of my chest and a PICC line inserted into a vein in my upper arm, as I had last year during treatment. For some reason, PICC lines are not adequate for receiving stem cells. I know how warped it sounds to call this a happy event, but folks, it's a big deal. The line in my chest was causing me trouble and it was impossible to keep dry in the shower. Throwing on a plastic sleeve and taking a long, hot shower, well, it's the little things that make me giddy these days.

I've past the 60 day mark, without any hospital admissions or major complications. I'm extremely lucky. I still marvel at this whole process. The changes my body goes through on this science fiction journey are a constant surprise. I had no idea that treatments for blood cancers are so complicated and sophisticated. My experience has taught me that it's impossible to separate science from luck or luck from faith, attitude and perseverance when trying to make sense of how things turn out. All I know is that I'm grateful for each day of healing.

Kathy

CANcer + HEALth = CAN HEAL

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.

Kathy

CANcer + HEALth = CAN HEAL

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.

Kathy

CANcer + HEALth = CAN HEAL

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.

Kathy

CANcer + HEALth = CAN HEAL

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!

Kathy

CANcer + HEALth = CAN HEAL