Good News Among World Tragedy

My heart grows heavier every day as I watch the events unfold in Japan.  Relief efforts become more and more difficult because of the radiation exposure, and people can't get the supplies and medical attention they need.  The younger generations face a significant risk in years to come of thyroid cancer and, you guessed it, leukemia.  My prayers are with all the people of Japan, but especially the 50 nuclear power plant workers who are trying to prevent further disaster.  They are the martyrs in this tragedy. 

It's hard to celebrate happy things when so many people are suffering.   But I do have reason to celebrate.  My bone marrow biopsy showed "no evidence of residual leukemia," and the chromosome analysis (cytogenetics) shows "a normal male donor" in all cells analyzed.  This means that I am in complete remission and the report could not have been better!  My relief is indescribable.  When I was first diagnosed, my biopsies revealed an abnormal chromosome, the inversion 16 or 16i.  This was seen as a "favorable" marker because people with AML who had 16i did well long term, once in remission.  I was an exception, as usual, and I relapsed.  But when any abnormalities show up, they indicate the presence of leukemia.  I was very happy to read on the report, "no consistent numerical or structural chromosome abnormalities were observed."  Also, another test, called a Chimerism, showed that in the two of the ten blood lines where leukemia shows up (the white cells and the lymphocytes) my bone marrow is 99% converted to a male donor. 

As with any transplant patient with an unrelated donor, I will be at highest risk for relapse for the first two years, then my chances of being completely cured will go way up.  It's possible that some rogue leukemia cells escaped the chemotherapy and radiation, and that my new stem cells don't find them to kill them.  But because I've had two bouts of GVHD (graft v. host disease), and we know that the stem cells are fighting me, we can assume that graph v. tumor is also taking place, and that my new immune system would also kill any leukemia cells it finds. 

My other good news is that the CMV virus, for which I've been treated since late December, seems to be under control, finally.  All medications for this virus are very intense and have terrible side effects (blasting headaches, kidney damage, etc.), but I'm now on pills that I'm tolerating and are working.  In fact, since I don't need long IV infusions of these creepy drugs, the PICC line was taken out of my arm and I no longer have a central line for the first time since November.  I'm free!  This makes me feel less like a cancer patient and more like a regular person.

I'll be completely off the steroids, and hopefully through with the CMV pills, by the beginning of April and by mid April I should feel physically stronger and able to gain some weight.  The progress that most transplant patients experience by three months will take me about five, but with the overall transplant a success so far, I am grateful to be here and to be turning a corner.  I'm looking forward to the next phase of recovery -- physical therapy to regain my muscles, eating non-stop to achieve a three digit weight, taking walks, and building my stamina to return to work.

Cancer is a tough war to fight.  This has been an especially tough tour of duty and it's not over yet.  The battle fatigue is difficult for an impatient person like me.  Sometimes, when I think of all the phases of fighting I've faced over the past ten years, I am reminded of the soldiers who found themselves under the stop-loss policy in the Iraq and Afghanistan wars [the involuntary extension of a soldier's active duty in order to send them back to the front lines over and over again].  I don't mean to compare the two experiences, but the concept struck a nerve.

Overall, I'm optimistic about my future.  I've seen enough of the front lines.  Yes, technically I will always have metastasized breast cancer, although ACCB is not really breast cancer.  But with Dr. Georgiades at Johns Hopkins and his radiofrequency ablation magic, we'll handle that if necessary.  No problem.  I'm committed to living a very long life and dying of something other than cancer. 

I send my thoughts and prayers out to those in Japan fighting their own horrible war.  They too are on the front lines, battle fatigued and scared.  I find comfort, gratitude and respect for the good samaritans there are helping people they don't even know in any way that they can.  I'm also glad to see relief pouring in from so many counties.  Now is the time, as with many times in the recent past, for generosity, compassion and recognition of all the good things we take for granted.

In love and faith,
Kathy

CANcer + HEALth = CAN HEAL

Didn't Expect That Detour

Life in Transplant World can be such an adventure.  While trying to manage recovery, GVHD, the viruses and infections that can pop up at anytime, some random thing can smack you right in the gut.  And it did.  The day after I wrote the last post, a Monday, I went in for a treatment for the CMV virus.  Having received two of the three required negative test results to stamp down this beast, I was hopeful that the new GVHD flare up wouldn't re-ignite the virus and that this would be my last treatment.  During the five hour infusion, I developed stomach pain that got worse as the day went on.  I was so sick by the time I left, I was given two choices:  get an IV of anti-nausea medication to get me home so that I could take pain killers, or go to the ER.  I elected option one.  That was a mistake.  I made it 2/3 of the way home and had to pull over.  If Dave and Betty hadn't retrieved me from the Parkway, I would probably still be there.  I was sick on and off the next day, and by Wednesday morning, I had pretty much collapsed.  Again, Betty came to my rescue and drove me to the ER.

[For those TMI (too much information) readers, you may want to skip this next part.]  A CT scan of my belly showed that I had a small bowel obstruction that was unrelated to the transplant.  It takes a lot to render me speechless, but that sure did.  A what?  How?  Apparently, this is a standard risk of any abdominal surgery.  No one knows how scar tissue will be formed, and sometimes part of the bowel adheres to the scar tissue causing it to twist.  It can happen years later.  One doctor told me that his 75 year old father had a small bowel obstruction from a surgery that he had when he was 17.  I've had one open and two laparoscopic abdominal surgeries, and one of them probably caused the obstruction.  But on Day 100, when I was supposed to be celebrating milestones in my recovery?  At least it explained why I had been having such bad stomach pain whenever I ate for the last two months. 

I was admitted to the hospital and told that inserting a nasogastric (NG) tube usually does the trick.  It's everything its name implies and extremely uncomfortable.  If that didn't work, they would have to operate, which would then create more scar tissue, increasing the risk of this happening again (not to mention the risks associated with very low blood counts and a compromised immune system).  I was in the hospital for four days, unable to eat or drink.  Thankfully, the terrible NG tube worked and the pain and obstruction are gone.  I'm very happy to be able to eat again, especially since I now weigh 88 pounds.  (I'm eating as much as I can, but the steroids work against me.)  Mary dropped everything and drove from Pittsburgh to help me through this ordeal, as she always does when I'm having a crisis.  I honestly don't know what I would do without her. 

This was certainly an unexpected turn of events that surprised everyone, and I must say, led to some of the most terrible moments of this entire process.  But it's over, hopefully not to be repeated.  As predicted, the increased steroids to treat the second round of GVHD have turned my muscles to mush and lowered my counts.  Also predicted, this brought back the CMV virus, for which I am still being treated.  I feel like I'm swimming upstream, but I have to focus on the passage of time.  I am 110 days old, and my new immune system is learning its way around its new home.  In terms of the transplant, my doctors say that I'm doing great.  I had my twelfth bone marrow biopsy, and I should get the final results in about a week.  Thankfully, this was the last planned biopsy, so my poor hips can finally heal from all those corkscrew invasions.  I'm slowly coming off the steroids, which will allow my body to heal itself from viruses and bring my counts back up.  Although I thought that March was to be my month to gain weight and build my body back, it looks like it might be April.  As long as I get there, I'll be happy and grateful.

I've been to a couple of support groups this week, and again, I'm reminded that there are those that have endured much worse complications than mine.  I really do see a light at the end of this tunnel, and when I finally see the sun (well, I'll have to wear a lot of sun block), I'm busting back into life!

Kathy

CANcer + HEALth = CAN HEAL

Two Steps Back... (or are they?)

This has been another busy month.  In addition to fighting the CMV virus (see last post), I contracted another hard to treat virus and an infection.  Then, a week ago Friday (after the doctor's office was closed, of course), I noticed an uncomfortable rash spreading everywhere.  It felt like a bad sunburn.  I knew immediately that I was having another attack of GVHD -- Graft v. Host Disease.  I was almost through with the steroids I had been on for 10 weeks to treat the first rash, and I was looking forward to getting off them completely that next Monday, gaining some weight, and feeling stronger.  When I called the on-call nurse on Saturday morning, she upped my dosage to get me through the weekend, and on Monday, my doctor gave me a whopping one time IV dose to "put out the brush fire."  I had been tapering down to 10 mg. every other day, and now I'm starting all over with 100 mg. daily.  I came so close!

Since steroids suppress the immune system, I was told that the CMV virus, which was almost completely under control, will come back and that I have to stay on the really strong medication that makes me pretty sick.  Again, so close!  It will take about another 2 months to get where I was 2 weeks ago, but it's important to beat down the GVHD once and for all.  I'm told this is all perfectly "normal," and that setbacks like this just come with the territory.

The good news is that the steroids rev me up and I have a little more energy with a little better appetite.  I'm trying to take advantage of this with the weather nice every now and then.  Today is Day 97, so maybe with the passage of time and I won't feel as bad as I did before. 

As I sat at the doctor's office that Monday, getting the 5 hour CMV infusion and the brush fire suppressant, I was pretty discouraged.  Then a big, burly, healthy looking man with tattoos on his neck and a larger than life personality, took a chair for a treatment.  Listening to him talk with another man who was donating stem cells, I learned that he's had a really rough GVHD journey.  His GVHD attacked his gut and ate into his intestines, requiring surgeries and other awful procedures.  He also went blind and had to have the inner lenses of his eyes surgically repaired so that he could see again.  Now he's getting treated with a process called photopheresis.  This is very effective for bad cases of GVHD, in that it siphons off the patient's blood from one arm, treats the T cells in that blood (where GVHD is found) with a special drug, after which ultraviolet light is then used to clean everything up and the blood is then returned to the patient in the other arm.  The problem is that these treatments take all day, are usually 2-4 days a week, and can go on for a year or more!

As I listened to him, I was stunned at his positive attitude, sense of humor and resilience.  The word inspiring doesn't come close to describing this man.  I sat in my chair, humbled and embarrassed at my flirtations with self pity.  I really have little to complain about.  If things don't go exactly as I hope they will, so be it.  Getting a new immune system and having it work takes time, and I've been very fortunate so far.  My two steps back are very baby steps compared to many in my situation. 

I probably won't get the bone marrow biopsy this week, with these recent medical events.  But I should have it soon and know the results around mid-March.  Knowing that I'm in remission with my new stem cells will be a big sign of healthy days to come.

In my December 24, 2010 post, I mentioned that my mother fell, hurt herself and was in rehab.  I also reported that the crisis was subsiding.  Not so much.  She developed a serious infection and was in rehab and then a group home for over two months.  The day that she moved from the rehab center to the group home, her neighbor discovered that her house had been broken into.  The thieves took her medications, blank checks, her car and anything else they thought looked valuable, while tossing her entire house into orbit and fleeing before everything landed on their heads.  Crisis back again.  Since the end of January, I've been trying to help coordinate the clean up, house repairs, identity theft, police investigations and financial matters, while my mother tries her best to recover physically and emotionally.

As usual, I approached this like a trial with logistics keeping me focused and feeling purposeful.  But, as with any trial, nothing could have been done without a team.  With the tremendous help of my mother's neighbors, the Keatings, all the wonderful professionals, my sister, Lynda, and some of her friends, and my best friend from grade school, Sheryl (along with her husband, Rick), Mom is now home -- safe, healed, and slowly getting back to her life.  My Timing Angel kicked in a couple of days before my mother came home when Sheryl, whom I had lost track of since the 1980s, found me online.  We connected on the phone, she expressed an interest in helping, and she has been assisting my mother in countless ways ever since.  She and the Keatings, who check on my mother almost daily, deserve a special shout outs.

One big relief for me is my father's progress in the nursing home.  His dementia has slowed, and he sounds better than he has in several years.  In fact, he was named Resident of the Month for March, and nominated for Valentine's Day King!





I'm so thrilled to have Sadie home again, bringing life, humor and purring cuddles to my world again. She and her Pittsburgh cousin, Mikey, peacefully co-existed for 2 months, although Sadie clearly saw herself as in charge.




Over the next few weeks, I plan to go to physical therapy a couple of times a week to build endurance and muscle strength, take some walks and see a few friends.  Here's to the winter thaw and the many reminders we encounter every day of all that we have to be grateful for, even if life presents us with setbacks along the way.  With Sadie, Bruce Springsteen, Netflix, and my Kindle to help me stay grounded, I'm doing just fine.

Kathy

CANcer + HEALth = CAN HEAL

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