100 Days Surviving Leukemia

Breaking point?

2010-08-17T13:39:00.002-04:00

What a couple of weeks. How to even describe it? I feel run over, chewed up, spit out, exhausted, anxious, and 100% completely tired of dealing with the whole thing. This GVHD is just, well, it's too much. For the first time ever, I am actually scared that the cramps and stiffness I feel in my hands could keep me from working. As previously mentioned, I am back on Prednisone. That has helped with the stiffness. But, the cramps got way out of control. So, my doctor, not really sure it would help, said, "Let's try Rituxan." Rituxan is done through transfusion. 4 times over 4 weeks. Not a pill I could just pop. So, last Friday I went in and got my first transfusion. The cramps have subsided. Ahhh, relief. But, of course, I lowered the Prednisone and *BANG* the stiffness came back. So, I upped it again today after consulting with my doctor. He is hopeful though that the Rituxan will take care of the stiffness and the cramps. It will be a relief to be able to be off the Prednisone.

But, all and all, I am just plain tired. Tired of feeling like crap. Tired of running to clinic. Tired of taking piles of pills. Tired of being a cancer patient. Tired, tired, TIRED!!! I just don't want to do this anymore. As I've said before, cancer leaves you with very few choices. I don't want to give the wrong impression. Even with all the stuff that's been happening. Overall, I am doing well. I'm just losing sight of that right now. Constant pain has that effect. I need to dig deep and find a bit more strength. It's tough but, I need to.... or else I might just go crazy.

Back on the Prednisone Pony

2010-08-10T08:16:00.003-04:00

Well, it finally got to that point. I kept swearing to myself that there was no way, NO WAY, I was going back on Prednisone. But, the stiffness, the pain..... it became too much again. Ugh. So, here I am, back on it. It's working. The stiffness is subsiding. I feel like I can get out of bed in the morning. I can move. It is a relief. This time I am only doing a "pulse" of prednisone. Just a 3 week quick course. Hopefully coming off of it won't be as bad as it was last time. It hasn't really helped with the cramps thought. They have found their way back and this time with a vengeance. My hands cramp up so bad in the evening that some nights I just sit there, rocking back and forth, crying. And, once again, I find myself back on GVHD roller coaster.

This Thurs. I will be speaking as survivor at Genzyme. It is for the Leukemia and Lymphoma Society. We are trying to start a walk team there for Light the Night. This will be the first time I have ever spoken about my experience to a group of people I don't know. I am not sure what I will say. I have an idea. But, how do you sum it up in 3 to 5 minutes, an experience that consumed a huge chunk of your life? I know I will figure it out. I am actually very excited about it. I hope my story will move the people at Genzyme to form a team. Wish me luck.

Vacation...it does a mind good

2010-08-03T11:37:00.004-04:00

Just returned from my second vacation this summer. What a rarity. I never, and I do mean never, take 2 vacations in the summer. I guess when you face death and survive, you realize that more vacations are a good thing and that the world won't end if you're not working for a week.

What a nice week. It was just me and my girl. My husband stayed home since work is just crazy for him right now. We rented a house on the Cape. My sister and her kids came down for part of the week. We visited friends that live down there. It was a great chunk of mom and kid time. Also, I truly realized how strong mine and my sister's relationship has become. I credit us both for wanting the relationship to be stronger and working to make it so. Things like that don't just "happen". It takes work, love and forgiveness.

But, as I could have easily predicted, my anxiety started to swell. As I drove down, the tired old track that seems never stop whenever I start having fun began to play...."this is the beginning of the end....things are going too well.....it's all going to come crashing down again...." For about 3 days this feeling of anxiety and dread stayed with me. One night I talked to my sister about it. She listened and reassured me. It helped. But, it wasn't completely gone.

Then, without me even noticing it or thinking about it, it happened. I just plain forgot about all my worry. I think I was just having so much fun I didn't even notice the soundtrack of worry and dread had stopped playing. I was just living life, plain and simple. When I finally noticed that the anxiety had abated, I felt a sense of shock and relief. I actually managed to just enjoy myself and not feel like I was destine for doom. It was possible. So often it feels like an elusive goal I will never achieve. But, my husband always tells me that someday I will just say, "I had leukemia." and that's it. It was something that happened to me years ago and I passed beyond it. I will be able to say it and not feel the dread. I will be able to think about it and not begin to worry. It is not to say I will forget. That will never be possible. But, much like forgiveness, you can give it without forgetting. Someday I will live in that place.

1 1/2 Years Out From Transplant

2010-07-08T15:41:00.001-04:00

If I had only read the bottom of the page....

Yesterday marked 1 ½ years out from transplant. Wow, it is hard to believe it has been that long. It’s strange, but somehow during the transplant and for the 100 days (where I got the name for my blog) I spent in isolation after, I don’t think it had really sunk in to my brain that I could relapse. I was so focused on surviving the transplant that I never really thought about relapse. I think I just wanted to believe the transplant was the cure, hands down, end of it all, cancer gone forever. But, eventually I came back to reality and once I started feeling better the truth of my situation sank in. Relapse can happen even after transplant.

Once things sorta sunk in is when I began to scour around for survivor stories. My first stop, the internet. I bought many books written by survivors. My first read was Evan Handler’s (the actor form Sex and the City, Charlotte’s husband) tome “Time On Fire” about surviving AML in the late 80’s. It was a rough read, very raw, but I loved the fact that he is still here more than 20 years after his transplant. The rest of the books I ordered are still on my shelf. I don’t know if I will ever read them. They are hard to read. It is like reliving what I went through. But, they are emblematic to me of the fact that people do survive. I also turned to other survivors blogs. I have followed many. I’ve even connected with a few of the people behind the blogs. This can be tough too. Some don’t survive. I cried so hard when Jasmina and Lauren Ashley died and was so torn up when Nick Glasgow passed away. It breaks my heart. I know what they went through. I know the pain, the hell. To go through all that and to not survive….it is not fair.

While life has pretty much returned to “normal” I can still feel the rawness of the whole experience. It really is just below the surface. One little scratch and it all comes out. Lately my thoughts have been drifting back to my day of diagnosis. It is emblazoned in my mind. I had just returned from a development trip to China. I felt lousy during the whole trip. Before I left for the trip, I felt like I had a cold coming on. I was so pissed that I had to travel all the way to China with a cold. I felt so bad while in China I actually went to a hospital over there (Ekk!). I thought I had a sinus infection. They did too. My glands were so swollen and my gums were swollen too. I was waking up with night sweats. I had an almost constant headache. They gave me some antibiotics and I went on my way. They did nothing to make me feel better. I promised when I got home, if I didn’t feel better, I would go to my doctor. I never felt any better and three days after I returned, I went in to see my doctor. I told him over the phone I thought I had some kind of sinus infection. So, when I went in I didn’t expect them to draw blood. It was drawn before I even went in to see him. He just did it as a course of routine since I hadn’t been in to see him in quite some time. The next day, as I was trying to figure out what to make for dinner, I received the call that changed my life. My doctor asked me to come in immediately but wouldn’t tell me what was wrong. I knew it was bad. Something inside me told me it was cancer. Even when I went in to see my doctor, he wouldn’t tell me. He just told me not to go home but rather to go right to the emergency room. Even when I got to the emergency room, it took quite some time for them to tell me what was wrong. All I had was the blood draw results from yesterday to look at that my doctor had given me. I remember staring at the numbers as I waited for my husband to arrive at the emergency room, hoping they might tell me something. Ironically, if I had bothered to look below the numbers at the bottom of the page it read “Rule out M4 acute leukemia.” My answer to what was wrong with me was right there on the page. I noticed this months after the transplant when I was going through all of my papers. Unbelieveable. How did I miss that? That very night I was admitted to Mass General. I never went home and spent the next month in the hospital. Some days I truly wonder how I survived. Three months in the hospital??? Bam, bam, bam! How the hell did I do it?? But, in the end, what choice did I really have? I didn’t…so, I did what I had to to survive. And, here I am, 1 ½ years out from transplant and doing well. Phew…

Anxiety...Does It Ever End?

2010-06-29T11:23:00.003-04:00

A Plymouth Sunset, taken on Sunday from the breakwater while visiting my dear friend Em. Living life.......

Last week I had a check up with my doctor. It had been 6 weeks since I had been in. Every time I am in now I always lobby for more time between visits. My rational is if I can go longer between visits, the better I must be doing. But, I have discovered this can be a double edged sword. Take this last 6 weeks. While up in Maine on vacation my daughter got sick. Just an average, run of the mill cold. Well, I caught whatever she had. I was feeling a bit crumby but I actually got over it with very little incident. But, my anxiety went in to overdrive.....racing thoughts....I'm getting sick again....I'm away from my doctor....I've been doing too well.....it's all going to come crashing down again.....this is the beginning of the end. I wanted to know everything was ok. Needless to say, by the time I did go in to see my doctor, 2 weeks after vacation, I was nervous. I prepared myself for him to say, "Jules, we're going to have to admit you today. You can't go home." But, it was all ok. Relief. I told Dr. Attar how anxious I was. He kindly asked if I wanted to come in more often to easy my mind. I knew this was not the solution. I told him "No, this is my new reality. I NEED to get used to it." And, he gave me another 6 week reprieve. In fact, the only reason I need to go in at 6 weeks is because of my liver. My level are still elevated because of the GVHD but stable. As Dr. Attar said, I have the kidneys of a 17 year old :), the liver of a 21 year old the morning after the 21st birthday and the blood of.......wait for it.......the blood a cheetah. He's such a comedian. If he weren't a doctor he should do stand up. And so it goes...the new rhythm of my life. I need get used to it. I don't know if I will ever believe I am on stable ground no matter how far out from transplant I am. I think there will always be a part of me that is acutely aware that it could all come crashing down in a moment. Can you ever get comfortable with that? I don't know. But, what I do know is that I need to live life. If I wait for things to come crashing down again I will miss all the time I have now.

Damn Blood Cancer!!!

2010-06-14T16:17:00.003-04:00

I just returned from a wonderful vacation up in Maine. It was a glorious week. We had so much fun and the weather was great. It was a beautiful escape from reality. So, today it's back to the grind. Sifting through the emails.....I followed up on my dinner date with a dear friend for tomorrow night. Low and behold, her father-in-law was diagnosed with lymphoma. He received his diagnosis a week before I left for vacation and my frined didn't want to ruin my trip by telling me before. So, he started his treatment today at Dana-Farber. He's older so who knows if they can do a stem cell transplant. They said 1 year without treatment, 3 years with chemo. I f@#$ing hate blood cancer. I feel so mad today. Just pissed. WTF! It seems like everywhere I turn, blood cancer. Every diagnosis I hear of makes me want to work that much harder to raise money for cures. My insides feel like they are being squeezed I'm so mad. Not what I wanted to come home to. I know the roller coaster they are about to board....no f'ing fun. Time to double down....I need to do all I can to end this so not one more family has to go through this.

Reclaiming Me

2010-05-23T21:56:00.002-04:00

For a long time now, every since this ordeal started, I have felt very much like a stranger in my own body. All the drugs, the transplant, losing my hair, being weak and fragile, GVHD...it's an endless list of things that have changed my body forever in to something I have a hard time recognizing some days. It has been hard to believe in my body again, to invest in it, to trust it. I am the cautious long time friend that once got burned and has now instituted the, "Fool me once, shame on you, fool me twice, shame on me" rule. I have never blamed my body for what happened, In fact quite the contrary. I have often felt sad for my body and all that it's been through. But, that has little effect on how I view my body. Before I was diagnosed, I worked out, got weekly massages and loved to get a good hair cut at a nice salon. Things most women love. While I was sick, I had no hair to cut, no immune system to allow me to go get a massage, no strength to lift those weights. All that was put on hold until further notice. As time has passed, I have been given the green light to go and reclaim these things I loved. In fact, many of these things I was able to go and do months ago. So, why didn't I? What stopped me? I knew what was holding me back but hated to admit it. The trust was gone. My long time friend was now a stranger that had burned me in the past. How could I invest in this damaged body? How could I ever believe it was worth anything again? My beautiful hair came back different, my body is stiff from the GVHD, my skin has a different texture, so many things, big and small, are not what used to be me. How would I ever find my way back to me?

Time helps, time heals, time offers perspective. I guess sometimes you just have to look at it from the other perspective. This body, while so dramatically different from the old me, is still here. It is alive and kicking. It fought hard for so, so long. It is still fighting right now. Fighting to keep me well, fight to give me a life and to keep me here with my family. There were many times my body could have just given up. That would have been easier. But, it didn't. In fact, quite the opposite. No, this body fought like hell and it deserves a little love. So, I have finally found my way back to my body. Not completely, but, I have started the journey. I am now back to getting my weekly massages. I got the best damn cut, color and straightening for my hair. I now get pedicures, (something I didn't do before I got sick!) I have even started to work out again. This is a bit harder because of the stiffness. But, I do what I can. I have truly begun to reclaim me.

Mother's Day

2010-05-10T13:50:00.009-04:00

I remember when I was diagnosed with AML, my first thought was, "If I die, my daughter will have never known me." She was 2 on the verge of turning 3. Who has memories from that age? I would be lucky if she had even one single memory of me. I had visions of her floundering through life with this big gaping hole in her life. A ship without a rudder. Cancer would rob my daughter of her mother. This thought frightened me to the core.

Those months away from her were tough. I knew I had to fight like hell to get well and get back to her. Her visits to the hospital were very few. Preschooler germs and neutropenia are not a good combination. Lots of Skype. But, even that was tough. Preschoolers just don't understand why you're not there. They can see you and hear you but you're not there with them. I knew I needed to find other ways to communicate with my daughter and keep our connection alive and strong. My husband would tell me everyday about funny little things my daughter would say. Wacky little things that only made sense in a preschooler's mind. I loved hearing what was she was saying. It made me laugh during long dismal hospital days. So, I decided to illustrate her wacky world. I sketched out the scenes from her mind and emailed them to my husband. He then printed them out and gave them to Audrey to color in. I love it, my husband loved it, my nurses and doctors loved it, but, most of all, Audrey loved it. It was a my way of staying close to my daughter when this horrible disease kept up apart.

I am lucky to be a mom.

The Old Me Creeping In

2010-04-27T08:03:00.003-04:00

Once again I find myself lagging in my posts. And, once again it isn't because nothing has happened. No, no...that never seems to be the case. It's parts of the "old " me that I would rather have not had return after this fight for my life that have managed to find their way back to me like a bad penny. Let's face it, I am an A-type personality. I work hard, too hard. At any given moment I have about 5 or 6 balls in the air. My work has been suck the life I fought so hard for right out of me. Not good. I need to drop a client....easier said than done. The client I need to drop is a dear friend that stuck by me through this whole wretched ordeal. Yet, it is typically the work I get from her that puts me over the edge. *sigh* It's never easy, is it? Also, the parent company that she works for, well, they suck. It took me forever to train them to pay me on time and they are always penny wise pound foolish. I know it needs to be done I just not sure how. Also, I need to learn to say "no". I find that I am always so grateful that my clients came back to me that I never want to say no to anything. Enough about work....on to the rest of me. Well, the Cellcept finally seem to have made a substantial reduction in the hand and foot cramping. It's not completely gone and when it does happen it hurts like hell. But, it is on the right track. The vaginal GVHD...who knows! It's better, it's worse, it is a roller coaster like so much of the GVHD is. One other symptom that has resurfaced is the stiffness. It is probably the most troubling and hard to live with. But, I am managing. As I have said so many times before (sorry for being so whiny) I find this GVHD infinitely frustrating. On the very positive side I have been working more closely with the Leukemia and Lymphoma Society and am part of their Light the Night Leadership Team. I hope through my own team that I build, corp. sponsorship and corp. teams I help build I can raise a total of $10,000. It will be tough but I think I can do it. Also, I was able to lend my ear and speak about my experience with a woman who's mom was just diagnosed with non-Hodgkin lymphoma. I want to do more of that. So, the picture is of my latest TSV on QVC. Not sure how it did but should get a read soon.

Prednisone Withdrawal...Ugh...

2010-03-08T12:31:00.002-05:00

I am finally off of the prednisone. Yippee! But, now I'm feeling the prednisone withdrawal...fatigue, achy, blahhhhhhh. I did taper but my end taper was a bit quick. I went from 10mg to 5mg to nothing in two weeks time. I'm feeling it now. I am so glad to be off it but this withdrawal SUCKS.

On a positive note, my cramps have been very few and far between for the past week or so. I'm thinking the Cellcept may have finally ramped up to full strength. What a relief to have those nasty cramps be almost gone. Ahhhh...relief.

Last night was a bit tough. I was worrying about relapse. When ever I don't feel great (prednisone withdrawal) I worry. Even when I can explain why I feel the way I do, I still worry. The morning always brings a clearer head. It always seems like during the quiet at the end of the day is when the worry kicks in. My husband is so great at making me feel better about the whole thing. I am so grateful to have him by my side during all of this. He makes me feel stronger and more confident every day. I am a lucky woman.

Adrienne Vittadini is Launched!!

2010-03-04T09:48:00.003-05:00

And the line is launched!!! Good sell through so far. I think our Fall '10 is even better than Spring '10. Can't wait for that to hit later this year. God, it feels good to be back in the swing of things, designing shoes, going to meetings, working on new concepts. I love that my life now keeps inching closer to what my life was before. There are time now that I forget how close I was to death. I feel a bit of normalcy creep back in. It feels so good....like a hug from an old friend. I am so blessed. Check it out....

http://www.lordandtaylor.com/eng/search/Shoes-adrienne%20vittadini

Frustration

2010-02-26T10:07:00.003-05:00

Yesterday was another long marathon day at MGH. First a visit to the gyno then my doctor. It was a productive day but, it seems as thought the monster that is GVHD is back. Yes folks, the vaginal GVHD is back. So, back to the Clobetasol. I really thought I had put that behind me, crossed it off the list of stuff I have to deal with. Not so. Grrrrrrr.... Also, the cramps I've been experiencing in my hands, feet and back are still hanging around. The new drug, Cellcept, has taken them down a notch but they aren't gone. Not by a long shot. Last week I had a nasty cramp in my foot in the middle of the night. Woke me right up and took an hour to get it to release. It was brutal. My doctor says it make take quite awhile for the cramps to subside. Heck, they might never subside. I may live with this forever. Ugh..... And, my case of GVHD is mild, that's right, MILD. I can't imagine what people with moderate or severe GVHD do. It is the nastiest rollercoaster. Up and down, this drug then that, good one day then bad the next, gone then back again. So goes the life of a bone marrow transplant patient. So, all in all, I have a game plan moving forward which is a very good feeling and I am tapering off the Prednisone for good in a weeks time. Cross that drug off the list :) So, I do what I always do when I find myself frustrated during this long, long journey back to health; stop, remember how far I've come, remember those who have fought this disease and lost and find the ever flowing spring of gratitude inside me for the very fact that I am alive.

It's Official. One Year Cancer Free!

2010-02-13T14:46:00.003-05:00

The results are in and it's all good. One year bone marrow biopsy came back cancer free. Somewhat expected but none the less, it is my miracle, my blessing, my big sigh of relief, my $200 to pass go. It is a feeling of freedom that makes me giddy. At this moment in time there is officially no cancer in my marrow, none, zero, zip, nada. I can breath easier for awhile. Ahhhh...

So, while my slice of freedom feels amazing I still find myself with a gray cloud over my heart. My thoughts continue to wander back to Jasmina and LaurenAshley. Two beautiful little girls that had to live through so much pain. It's just not right or fair. I think of all they had to endure. All the love and prayers sent their way. I think of their families left with holes in their heart that can never be filled. All the sound and fury is suddenly silent. The fight is over and they are left alone. Indescribable sadness. These little girls will stay with me, in my heart, for a long, long time.

Another Child Loses Her Battle

2010-02-01T16:31:00.003-05:00

Little Lauren-Ashley lost her long, long battle with leukemia on Thurs. Another child who should have never had to experience this horrible disease. My heart aches in ways I can't describe. I am fighting back the tears. I pray for a cure that works for all. Something that doesn't have to bring you 1/2 an inch to death to work. I just can't write anymore today.

Jasmina Lost her Fight

2010-01-28T10:49:00.002-05:00

My heart is so heavy this morning. I checked back on Jasmina's Twitter account and learned that she lost her fight with leukemia. This disease is not fair. This disease cares not how old you are, how innocent your are. It is blind to all that. Six years old is just too young to have to deal with cancer. Six years old is just too young to die. Today is a very sad day.

The Curse of the Stale Blog

2010-01-12T10:06:00.002-05:00

Ouch, I've been away for quite some time. I guess that's what the holidays do to you. It is not for lack of things happening that I haven't posted. No, that is not the case. I love blogging when I have the time. But, I have been busy with living. That is a good thing.

I have finally made it through all of my one year anniversaries. Phew! It is a great relief to get through all of that. I had my first birthday on the 7th. It feels amazing to be one year out from transplant. The photo is of the stem cells my sister donated to save my life. I asked my doctor what the statistics look like for me now that I'm a year out. I had asked him at 6 months and he said my chances were 50/50 for relapse. I figured by one year out I would probably lop that number in half. I didn't get the answer I wanted. He said 30-40% chance for relapse. Grrrr..... I know numbers are just numbers and they are generic and not about me specifically, but, I wanted to shut the door more on the chance for relapse. I did finally get the results for my liver biopsy and I did have a bit of GVHD going on there. So, I got that in the bank to help keep the cancer away. It is still, as it has always been, a balancing act that you have to find a way to live through as best you can. I do have more and more days now that the cancer is not top of mind. I thought I would never get to that point. But, it's happening. Slowly.

To thank all of my amazing nurses that took such great care of me while I was in the hospital, I had them over for a home cooked meal, Italian family style. What a night! It was great. I am so luck to have these amazing women in my life. A couple of my nurses could make it. So, Caroline and I went out on my first birthday. She was there the day of my transplant. What a stark contrast! Last year she was hooking me up to my stem cells while I was bald, sick and laying in a hospital bed. This year we were out lunch, chowing down and chatting away. Wow....I am a lucky woman.

What a day in the community

2009-12-08T16:28:00.002-05:00

What an age we live in. With a few swift key strokes on the computer, you can discover an entire community of people who are facing the same daunting diagnosis as you are. Early on in my diagnosis, I didn't seek out this community. I'm not sure why. Perhaps I just wasn't sure I had a chance of making it. But, once I realized I might just survive, I began to seek out others with a blood cancer diagnosis. I found amazing websites and blogs. Mostly by fellow blood cancer patients who did not have a matching donor for a bone marrow transplant. Reading their blogs, following their progress truly crystalized how lucky and grateful I was to have my only sister be my match. I am one of the lucky ones. Today is a big day for Jonathan. He's getting his transplant today, donated from his sister Lynne. Krissy had her bone marrow biopsy yesterday. For anyone in this community, they will know exactly who I am talking about. There are so many amazing people out there that are just a few key strokes away. They are always never far from my thoughts. I delight when they are winning their fight and feel such sadness when things aren't going well. Many were lost in this community this year. Next year must be better. It has to be better.

All of this has lit a fire in me. It inspired me to start my own blog. I have become more and more involved with The Leukemia and Lymphoma Society. I want to educate. I want thousands more people on the bone marrow donor list. I want blood cancer patients to live longer, better lives. I want there to be a cure. That is my passion. That is my dream. And, as long as I am well enough, to this end, I will fight.

So much to write, so little time...

2009-12-02T11:42:00.002-05:00

I suppose it's a good thing that I am so busy with living my life that I haven't had time to post. I have been savoring this holiday season. Last year my holidays were blown out of the water by cancer. This year, I am doing all the things I wanted to do last year and more. My holiday card was the best ever. I did a full Thanksgiving dinner. The tree is already up. I even tried to make chocolate covered vanilla caramels from scratch for holiday gifts. I failed miserably but it was a tasty mess.

Anyways, this post will be short. There is so much I want to say. So much has happened. Right now I will just post the most pressing development. It looks like GVHD has finally found it's way to my liver. On Dec. 8th, I get to have a liver biopsy. Lucky me! So, I will probably have to go back on immunosuppressants. I am not happy about that but my doctor keeps reminding me it's a good thing!

I look forward to posting a longer post soon. I hope everyone had a great Thanksgiving and remembered everything they had to be thankful for.

The Cancer Creep

2009-11-17T10:55:00.006-05:00

Cancer is pervasive in many ways. There is the physical. It invades your body, trying to wiggle it's way in to every crack and crevasse. That one whacked out cell that just decides to multiply and spread. It is thoughtless and clumsy. It is a monster lurking is unknown places. Where is it now? Is it gone? If so, is it gone for good? Worry, anxiety, fear...the second invasion. Cancer creeps.

I often say to my husband, "I just want to be normal." His reply, "Normal? You were never normal, you Bird." (Bird is one of his nicknames for me) He says it to lighten the moment and to remind me, what the hell is normal anyway? For me, well, I know what it is. Normal is the day I wake up and the first thought in my head isn't, "I had leukemia." It's the day where something doesn't remind me how close I was to death. Normal is the day I don't have to down a mountain of pills to keep me from getting sick. It's the day when all the anxiety falls away and I am left with a life free from cancer's pervasive grip. Is that possible? Will I ever truly believe the cancer is gone for good even if I reach the 5 year mark? I remind myself daily that, as it stands right now, I have been given the tools to survive. I had the BMT, so far things are clear. My doctors are quite pleased with my recovery. I have everything I need to ultimately survive and live a "normal" life. So, will that ever be? I know the answer. No matter how you frame it, my life is forever changed.

Yesterday had a bit of a sparkle for me. It had a feeling of routine, a sense of average. I wasn't in much pain at all. The new meds seem to be working. I had a meeting at Clarks to discuss the next season, Spring '11. My daughter drew me a great picture at school. I watched House, my favorite show. The day shined in it's normalcy. On FB I posted, "Today was nothing special. Just an average day. But, that is what made it truly beautiful. I am just plain happy." I think that says it all.

Hidden Benefits

2009-11-14T13:44:00.003-05:00

Life after a BMT is filled with surprises, some good and some bad. I will start with the most recent bad. I had a clinic and gyno. appointment on Thurs. and I ended up breaking down in both. I never cry at clinic, ever. Most days I am quite glad just to be alive. But, dealing with the GVHD is starting to take it's toll. Of course, there is the vaginal GVHD that I've been dealing with for 6 months now, but, I now have it's new friends rearing their ugly heads. I mentioned in a previous post the stiffness, lack of power and pain in my hands and arms. It is still hanging around and some days so painful that I have all I can do to get out of bed. Then the new, more recent development, my urinary tract issues. I thought perhaps it was a UTI. But, no. Hence, my need for an appt. with the gyno. I love my new gynecologist. She is great. She has been coordinating with my cancer doctor to find solutions. After examination, she felt my urinary tract issues were from a lack of estrogen. You see, one of the nasty side effects from all the chemo I received is early menopause. I am only two months away from being considered through menopause. Unbelievable. So, she felt a topical estrogen cream would help. Something she's been pushing for awhile now that I just never ended up starting due to one reason or another. I felt such a sense or relief when I left her office. I felt like I had something to try that might take the pain away. Then, on to my clinic visit. That's when I really broke down. I had a very painful morning on Tuesday with my hands and arms that was still top on mind. I had my usual nurse that day, Cindy. She's just great. We always end up chatting for quit awhile when I am in. This time, she was my shoulder to cry on. I spilled my blubbery guts to her. (I'm a messy crier, just ask my husband.) I told her of the guilt I feel for complaining about the GVHD when I should just be happy to be alive. Of course she told me I have every right to complain and that it was ok. She also told me that around 1 year after diagnosis is when a lot of people just reach a breaking point. They are sick of dealing with doctor visits, GVHD, drugs, just plain sick of dealing with cancer. Finally, my doctor came in. He was running quite late that day and my day at the hospital ended up being one of the marathon days I so despise. I love my doctor. He is the perfect match for me. We have the same sense of humor and he is not a sugar coater. He gives it to me straight, good or bad and we can always find some reason to grab a chuckle at something one of us says. I cried to him as well. Venting my frustration at my GVHD and the constant pain I have been in. He said to me, "Julie, we don't want to win the war just to lose the battle." And he is right, They are there to give me the best quality of life possible. I know that. It just hard to escape the guilt I so often feel. So, out came the prescription pad with a new drug for me. Prednisone. Oh my. I have always dreaded this drug. I have had to take it once before for a very, very bad case of contact dermatitis of unknown origin. Prednisone did the trick then and now here it was, back at my door step. Another drug to add to my list. A drug with some wicked side effects. Ugh. Luckily, I was able to take one drug off of my list. Fluconozone got eighty sixed. So ,net net I was pretty much at the same number of drugs. So, while I felt some trepidation about going on to Prednisone, I also felt a swell of relief. Perhaps, I could get some relief from my almost constant pain. It has been a couple of days now and I have already started to get some relief. It is remarkable how quickly your mood can change when you are not in constant pain.

Now, for the good. I went to visit my sister with the awesome stem cells for a couple of days. Her kids and my daughter all have birthdays in the fall. So, we decided to have a little birthday get together. The morning I was to drive down, Tuesday, was, as I mentioned, quite bad for my hands and arms. I was in so much pain. I had all I could do to make it out the door and then drive for 3 1/2 hours to her house. As I drove, I had to alternate hands on the steering wheel. Giving one a rest, then the other. Flexing them, stretching them, trying to give them some relief. Now, visiting my sister has always been problematic for me in the past. You see, I grew up with cats, but, some where along the way, around the age of 25, I started to develop allergies. One of my allergies was to cats. My sister has two cats. In the past, when I went to visit, I either had to find some other place to sleep or try to suffer through with my allergy medicine that never seemed to do much. I was told that my allergies might change after having a BMT. So, I decide I would go down for a visit and stay at her house and not take any allergy medication. A bit of a trial by fire. Well, what do you know, I no longer have an allergy to cats!!! Wow! A wonder side benefit of the BMT. Ironically, it doesn't always work out for the best with some BMT patients and their allergies. My nurse told me of one patient who's donor, her brother, had a shellfish allergy. She never had one but after the transplant, she does. So, in this regard, I am lucky. My sister has few, if any, allergies. I also had no seasonal allergies this year either. So, thanks again sis. This in one side effect of the BMT I will gladly take.

"You Really Didn't Look So Good..."

2009-11-06T10:15:00.003-05:00

A few days ago, I spoke with a dear friend of mine to make some long overdue lunch plans. We worked together for quite some time many years ago. He had visited me a few times while I was in the hospital. I can remember one of his visits quite well. The others, not so much. As we chatted, we commented on how we couldn't believe that we hadn't managed to get together since I've been out of the hospital. The last time he saw me, I was bald and wearing the ever so fashionable hospital johnny. That's when he commented, in a very concerned tone, "The last time I saw you, you really didn't look so good. I thought, this is not good." I could hear it in his voice. He had a huge question in his mind as to whether I would make it or not. I have experienced this concern, this fear, from many people in different ways, with different levels of emotion and doubt. As unbelievable as it may seem, there were even a few people that I had to comfort over my diagnosis. No joke. I'm the one who was facing an untimely death and I was the one doing the comforting? Whacked.

But, there were two people who stood out above the rest. Two people that every time I saw them or spoke with them, they had "assumed the sale" as it were that I would be ok. It wasn't a denial kind of thing. No, they were well aware of the mountain that I faced. But, there was a confidence and a calm that was addictive to me. One person was my husband. Sure, he had plenty of fear and worry, but he also had an unshakable confidence. He was in every way possible, my rock. Then there was Rich. I have worked with Rich for 10 years now. We've designed and developed many, many successful footwear lines together. His world was turned upside down about two weeks after I received my diagnosis. He was unceremoniously ousted from the company he founded and grew from the ground up. And, the people that engineered his ousting were all his friends. Betrayal at it's purest. Perhaps it was the fact that we were both at a proverbial bottom that forged the mutual confidence in each other. Rich would visit all the time. He would fill my long days with hilarious stories. He would bring me work. A wonderful blessing. While I could tell he doubted his ability to pick himself up and start anew, I never doubted that he would be able to do just that. He is a true shoe genius. And, he never doubted that I would beat this wicked cancer and keep designing shoes, just as I had so many seasons before.

I am proud to say, Rich has started anew and I was right there with him. Our new footwear line will launch in Spring '10. I will post a link when it's out so you can all see what unwavering confidence looks like in shoe form.

GVHD, the gift that keeps on giving

2009-11-03T10:11:00.003-05:00

I feel a bit of guilt about writing this next post. There are so many people out there that are searching and hunting for their perfect match so they can have a bone marrow transplant. Praying for their shot at survival. I was so lucky to have my one and only sister be my match. My transplant was successful. I have really not had any major complications since my transplant. No infections, I engrafted fine, the cancer is being kept away so far....so, what do I have to complain about, right? Nothing I guess. I just find that, day after day, I am growing tired of dealing with this disease's many off shoots. GVHD. You understand it in a vague way when the doctors describe it to you after telling you the only chance you'll have of long term survival is a BMT. It seems like something small compared to the cancer. Something you can deal with for a shot at surviving. Your doctors also tell you that a touch of GVHD is a good sign for a transplant patient. Patients that have some GVHD have less of a chance of the cancer coming back. I remember being so terrified about GVHD after the transplant, but, at the same time praying for a bit of it to come my way. It seemed like such an amorphous thing that could indiscriminately pop up here or there. The doctors just don't know where it will decided to make itself known. They give the line up of the usual suspects, skin, GI tract and liver. But, what I have grown to discover is that GVHD can work it's way in to many other places. My manifestation is vaginally. There, I said it. I find it embarrassing to talk about. It's what I've been dealing with every day for the last 6 months. Just when I think it's under control, it flares up. It's just plain painful. And, recently, I feel like I am getting a touch in my joints. Who knew it could attack you there? My arms and hands are a bit stiff and their range of motion is diminished. My hands have lost some power and I can't make a fist. My doctors don't want to do anything yet with the arms and hands. It's a bit of wait and see. Some days it's bad, others, well, not so much. GVHD is just one big, mean, nasty roller coaster I would really like to get off of.

Halloween....and Ghostly Reminders of the Pre-Cancer Me

2009-10-31T15:14:00.004-04:00

Halloween is here. Another less important holiday I missed last year while a guest at Hotel MGH (Mass General Hospital). On Halloween, I always think of 4 years ago. Mark and I taking our new baby home from the hospital. Driving through the streets of Newton and seeing all the tricker treaters out and about. It was nothing less than surreal. I was so terrified of the pain of child birth. I didn't think it was something I would be able to do. But, I did it. Once I decided I wanted to be a mom and I got pregnant, I had no choice really. Much like the cancer. People tell me I am brave. But, when it gets down to it, did I really have a choice? I had to go through the treatments if I wanted to live. I had to endure the pain if I wanted to be around for my family. Cancer leaves you with very few choices.

So, I dug out a picture of my favorite Halloween costume ever. Me as a hooker and Mark as a pimp. Classic. It is strange to see pictures of the "old" me, the pre-cancer me. I feel disconnected to that woman. Her worries were small and her health was never an issue. She stressed about work deadlines, losing weight and relationships. A distant shadow of who I used to be. Last night, Mark listened to the messages on the voicemail. He said to me, "Hey, do you realize the recording you have on here is from before you had cancer?" I guess it never really occurred to me. But, that's kinda how it goes. I live among my own ghosts. Reminders of easier days. I never really know when they will pop up but they do from time to time. Some days, they are a welcome reminder that my entire life hasn't been about cancer. Other days they make me sad. Sad that my life has become so consumed but this thing that is so out of my control. And, on really good days, it reminds me that maybe, just maybe, I could get back to being that woman in the picture.

Happy Birthday My Beautiful Girl

2009-10-28T10:06:00.005-04:00

Today my daughter turns 4. Today feels special in many ways. Last year at this time I was in the hospital, waiting for my blood counts to rebound. It was taking awhile. What I didn't know then was I had not gone in to remission on my first induction. Cancer was still hanging around. I remember thinking that this birthday might be the last one I would get to see my daughter have and I was in the hospital. I wanted so badly to do the whole mom thing. Party, presents, cake....everything a little girl should have on her birthday. But, I was stuck. Stuck in the hospital, stuck with an impaired immune system, stuck with no hair, stuck with cancer.

As I recover, I realize how important and significant milestones are. To be here a year later and doing well is nothing short of a miracle. I prayed so many times to beat this cancer not so much for me, but for my daughter. I couldn't imagine her growing up with no mother. My husband, Mark, lost his mom to cancer when he was only 8 years old. Could this be history repeating itself? Mark's memories of his mom are mostly of her being sick. A parade of doctors and priests coming to the house. Mark only has 2 "good" memories of his mom. That's it. Would Audrey be left with the same? Would she be left with any memories of me if this cancer took my life?

I am very thankful to be here a year later and to be able to celebrate with my little girl. I'd be lying if I didn't say that my thoughts are already on next year. I want to be here again next year to celebrate. And the year after that, and the year after that. I want Audrey to have many, many good memories.

Heartbreaking

2009-10-27T15:26:00.001-04:00

Jasmina's leukemia is back. Heartbreaking.

And I thought surviving would be the easy part

2009-10-27T11:29:00.003-04:00

It has been over a year now since my diagnosis. I can so easily remember the long, dark days, in the trenches, fighting with every ounce I had to beat this wretched leukemia that had taken over my body. I remember thinking, "If I could just survive this...if I could just survive this everything would be ok." So, here I am. I'm 10 months out from transplant and my cancer has not relapsed. I've got a bit of chronic GVHD. It is painful and distressing but I keep reminding myself, it is a small price to pay to still be here. Otherwise, I'm back to working full time. I've made some amazing new friends through my battle. People that I never would have expected to be such big sources of support. It's pretty ok right now. The water is calm. So, why do I feel so much anxiety? Every night is a battle in my mind. How do I quiet my thoughts about a possible relapse? What if I get sick, catch a cold or the flu? Will the GVHD get out of hand? Will I have to go back on immunosuppressants? Around and around the questions go. Also, thoughts of others fighting blood cancer fill my head. I check their blogs everyday, hoping to hear they are winning their fights. I want everyone to win. I feel like I should be doing more. All these thoughts fill my head. It's crazy and dizzying. I want so badly to find a way to quiet my mind that spends so much time on overdrive. My nurses tell me it's normal to feel the anxiety. They say when you're actually in the hospital, fighting the cancer, it feels like you're doing something. When you're out and recovering, well, it's passive. You're just waiting, waiting for time to pass. For me it sometimes feels like waiting for the next shoe to drop.