Notes From Supergirl

My Diary from the Trenches

Day 177 – The Thanksgiving Post

November24

As promised, today I wanted to blog about the Top 10 Things I Am Most Thankful For This Year. There are many, many things but I think I’ve narrowed it down to the 10 that are most important to me …

1. Ty & Kieran, my two amazing, happy, healthy boys.

2. Being in remission

3. My family and friends. This one will be a little lengthy but there are so many people I am thankful for, I need to mention a few. First, of course, I am thankful to Brian for not killing my children while I was away for so long and for always taking care of us. For my dad for his frequent visits to the hospital, his food deliveries and for helping us get through a very challenging time. For my brother and Steph for all of their help and support. For Ginger and my Aunt Helen for staying and taking care of my kids. For Amy for being the best and closest thing I have to a sister. And for the rest of my family – Aunt Martha, Uncle Bob, Sarah, Mike, Grandma and so many other cousins and extended family near and far who have supported me through this in so many ways. And, although we’re not related, for Mike and Peggy who truly are extended family, for taking so much time to care for my kids.

As for my friends, I am thankful for ALL of you but I have to thank Heather, Robyn, Holly and Melly for your daily love, support, shoulders to lean on, medical advice, kid watching and so much more. I could have never got through these last few months without you guys. For Gigi, Anya, Julie and Irene for satisfying emergency food cravings and making ad-hoc parties in my hospital room. For Phaedra, Amanda, Philip, Gina, Kim K., Hillary and everyone else at FSMS who babysat my kids or delivered food to my house and came to visit me at the hospital. For Matt and Jim for our visits and great conversations. For Chip and Paul and all of the other people who made me laugh and cry with your comments on my blog. I know I am leaving people out, but I am thankful for all of you. Yes, being in the hospital sucked, but the memories I have made, the philosophical conversations that were had and the laughter and tears along the way are irreplaceable. And I now I have the largest collection of SuperGirl goodies large and small to remind me of each of you!

4. Dark chocolate.

5. Music and my iPod. During the most difficult times, having songs to escape to helped me through bone marrow biopsies, blood transfusions, stem cell harvesting and plenty of anxious moments. It also taught me how to meditate, shared incredibly inspirational stories and made me laugh. In my normal life, music allows me to dance in my kitchen, sing at the top of my lungs in my car and provide a daily soundtrack to all of the ups and downs. Old songs remind me of memories from long ago while new songs take their place in the memories of the moments I am going through now. My kids have taken on my taste in music so I can’t help but smile when Ty sings Kings of Leon or Beastie Boys songs in the backseat of the car and Kieran requests “fast songs that mommy runs to,” like Fat Boy Slim. At least I know I’ve given them music to carry on in their lives.

6. My blessed life. I’ve been lucky to have two good parents, a nice house over my head, money for education and a fairly easy life compared to the struggles that so many must go through. I am grateful for that and hope never to take advantage of it.

7. Exercise and yoga.

8. Good food to nourish my body and soul and knowing how to cook.

9. My parents for teaching me to be the person I am today, giving me the strength I have to face adversity and the encouragement and support to do whatever I wanted with my life.

10. Did I say dark chocolate already? Ok, seriously, the last (but not least) thing I am so grateful for this year are the nurses, doctors and new friends that I had/have at the University of Maryland Medical Center. In particular, Dr. Goja (my oncologist), Trish and Roseann (my nurses) and Brian and Elizabeth from Ulman Fund. I have also found incredible inspiration in Michael and Dan, two AML warriors who have shared their stories and their families with me and given me added strength to know I can get through this. All of you have inspired me and made this journey so much easier and more positive than I could have ever imagined.

This list certainly doesn’t cover everything. I also want to thank Claire and Jackie and everyone at Parents’ Choice for their support and for sticking with me and still having work for me to do after all of this. And I want to thank friends, family and complete strangers from all walks of my life who have read my blog and shared my story. Oh, and wigs and eyebrow pencils and the right shade of lipstick that help make me feel more normal. When my eyelashes and the rest of my hair grow back, boy will I be grateful for that! I still feel like I’m leaving things out, but you get the point that I am DARN GRATEFUL! I hope everyone has a wonderful Thanksgiving. Savor your friends, family and good food!

Day 175

November22

I was scheduled to have a bone marrow biopsy today but was pleasantly surprised when I got there and the doctor said she wanted to wait another week for my counts to keep coming up. She is also pushing back the start of my maintenance chemo by one week giving me almost two more weeks of almost complete freedom from the hospital. Next week I have to go in for a full day of pre-chemo testing including a chest x-ray, another echo cardiogram and another EKG. I am actually eager to get another echo and see if there has been any improvement in my heart function since the last one. I bought a pretty fancy heart-rate monitor and have been using it while I exercise. It also keeps extensive records of my heart-health so I can see if I am improving my fitness level over time. The good news is that since I have been home, my heart rate has been back to normal and I am comfortable exercising at the lower level of what I used to do. I have also seen pretty dramatic improvements in my strength over the last 3 weeks. As I told a friend of mine, although I have a long road of rebuilding ahead of me, it is also kind of neat to go through a period of growth again. My fitness level was very good before any of this happened but it had been years since I really challenged myself to reach a higher level. I think that this experience will take me to that next level … eventually.

As for my numbers, they are on the rise. I am happy to report my white blood cell count is once again in the normal range. My platelets were at 80,000 and my red blood cells were just over 11. All in all, everything is on the way. I am still dealing with this mystery pain in my left side. It is usually mild, but occasionally flairs up and wakes me in the middle of the night. The CT scan was completely normal (minus one lesion on my liver) and the doctor is pretty stumped as to what it could be. She is inclined to think it is muscular but said that if it persists she wants to do an MRI of my spine just to double-check that there are no nerveĀ  or degenerative issues. In the meantime I am trying to ignore it. Advil and Ativan (for anxiety) seem to be helping. One takes the pain away, one makes me think less about it.

Everything else is going well. I had a great visit with my cousin Amy over the weekend. It was so awesome to have some quality girl time – and shopping. I’m working hard and working hard on getting ready for the holidays. I’m very excited about the holiday parties and the baking and the gift wrapping and all of those things that serve as wonderful distractions while I try to refocus on normalcy.

My next post will be a special top 10 thankful list in honor of Thanksgiving. As you can imagine, I have so many things I am thankful for this year.

Day 171 (Follow Up to Day 170)

November18

I was re-reading last night’s blog after a good friend noted my serious tone. I think I was slightly delirious from dealing with the monster 2-year old and frustrated I couldn’t finish some work I had started because of a computer problem. In any case, I think what I meant to say in a way far less negative than it may have sounded is simply to embrace life and not let the little things get you down. I think all of us, cancer or no cancer, let ourselves get wrapped up in taking on too much stress and negative energy from people or circumstances that surround us. We waste a lot of time worrying about things that have happened in the past or what might happen in the future or stressing about things not happening right now exactly the way we want them to. But if we clear all of that clutter from our heads and focus on all of the amazing things we already have, suddenly we find ourselves living in a beautiful moment.

So go out and spend too much on the kids for Christmas because seeing the joy on their faces that morning will be absolutely priceless, BUT be sure to teach them the importance of gratitude and giving back to others. Go splurge on that pair of shoes you’ve been thinking about because everyday that you wear them you will be happy you did and walk with an extra spring in your step. Tell your friends how awesome they are because they will love to hear it and you will be glad to have let someone else know how important they really are to you. We never regret doing or saying the things we really want to do, we only regret the things we didn’t do. I truly love and appreciate all of you who have trudged along with me on this journey and just want for all of us to embrace the lives we have and live them to the fullest. Hopefully that means a lot more girls’ nights out and a lot more crazy adventures!

PS: I just came across this great book I will be getting the kids for the upcoming holidays. It is called “An Awesome Book of Thanks” and you can get it on Amazon or preview the entire book on the author’s website: http://veryawesomeworld.com/awesomebookofthanks/inside.html. It is a really great way to teach them the importance of being thankful for all of the things in our lives. We’ve also been reading The Berenstein Bears Get the Gimmies which has been helpful and humorous in helping to tone down my 5-year old’s unending desire for Christmas presents.

Day 170

November17

It is amazing how much things can change yet stay exactly the same. I am back to basically my normal routine – taking care of the kids, trying to squeeze in work when they are at school or sleeping and trying to take care of the rest of the day to day things. When I envisioned coming home and finding time for balance and self reflection, what I had not counted on was my two-year old not going to sleep until 9 and spending over an hour and half climbing in and out of his bed. I also hadn’t figured on doing all of this myself. Brian is still here, I didn’t mean it to sound like he wasn’t, but he has returned to normal working hours and doesn’t come home until very late most nights. He has a lot of time to make up for after me being gone for so long. I caught myself sinking into a bit of anger and depression about the whole situation and then Roseann emailed me a series of older blog entries that she wanted to use and re-reading them made me realize how much I had come through. Although anyone could have told me that my life would not be perfect or blissfully happy after coming home from treatment, I think I had higher expectations than I am allowing myself to achieve.

I have had to face the fact that a) I have no control over what my fate will be with regards to whether this ever comes back or not; and b) that said, as Chip reminds me, I am, in fact, the master of my fate. It has always been challenging for me to take control of what I truly want in my life. I have no problems taking control of things like the food I eat or the amount of exercise I do or what I want to look like each day. But taking control of my fate, my future, my happiness has always eluded me in lieu of letting other people or situations guide me. After having been through the last 5 months, what I realize now is that it is all too easy to relapse into bad habits and bad mindsets. I know how to experience true happiness because I feel I have come so close to a dark side, there is inexpressible joy simply in being alive now. As for the day to day, I must not forget that and I must make time to focus on what’s important, even if it is only 5 minutes of reminding myself that I beat cancer at 34 and most other challenge should pale in comparison.

Day 165

November12

This is just a quick update. I have obviously been pretty bad about keeping up with things lately. I started working again, which I am so thrilled to be doing, and I’ve basically resumed my normal routine of taking the kids to school, running errands, doing housework, working and working out. Mundane to most, but magical to me right now.

Overall I feel good. I am still dealing with a little bit of fatigue but I am also still slightly anemic as I wait for my counts to come up. I saw my regular oncologist yesterday and all of my counts are working their way up slowly but as expected. My white count has almost reached the normal range and my platelets are now at 50,000 exactly. Low for most people but a good place for me. The doctor said she expects my counts to be almost fully recovered in a couple of weeks. I go in for my next bone marrow biopsy the week before Thanksgiving and I am slated to start the maintenance chemo the Monday after Thanksgiving. The maintenance chemo is all out-patient, just for an hour a day for 4 days in a row, every 6-8 weeks. This would continue for 8 cycles, which is around a year. There are virtually no side effects and it doesn’t “attack” your immune system the way the other chemos have done. It is designed to correct the genetic defect that probably caused this disease to begin with. Since this is a clinical trial, there is no way yet of knowing whether this maintenance drug actually keeps people in longer or permanent remission but this is obviously the objective of the trial. Although I debated about doing this phase, I think I have decided to go forward with it. I wouldn’t want the leukemia to come back and then be left wondering if I had tried something else if it would have stayed away. Maybe this will work and one day I’ll be able to say I was a part of something that made a really big difference to future patients. Again, all we are left with sometimes is hope.

Aside from the day to day stuff, I am really busy planning and spending money for the holidays. I couldn’t be more excited about Christmas this year. I’m also excited for 2011 and ready to put 2010 behind me. Before I get back to work, I want to thank the Ulman Fund for including my story and photos in a PSA that will air at the Towson University football game this weekend. They did a great job with it and I hope it will help to bring more support to their organization.

« Older Entries