Notes From Supergirl

My Diary from the Trenches

Day 135

October13

Tomorrow is the big day – I get my stem cells back, wahoo! I’ve been told it is very anti-climatic. It only takes about 15 minutes and it is as simple as a blood transfusion. There is no pain involved, but some awkward tastes that they help you mask with mints. Once it is finished, it could be 10-12 days before my counts start to come up. In the meantime, my counts are working their way down but were still in the normal range today. There should be point where there is overlap in the old cells leaving my marrow and the new cells beginning to adhere and start producing on their own.

I’m still feeling okay so far. I have been able to exercise and eat well and I would like to think this is helping to manage some potential side effects, although the real side effects won’t kick in until my counts are bottomed out. As my doctor said, let’s just keep hoping that this stay remains boring – boring is better! And oh how I would love to be boring for a change!!!!

I had a great surprise visit with Dan and Darcy today. Dan ventured on this journey before me and remains an incredible inspiration. This was the first time we met in person and I couldn’t be more appreciative for that. My dad also came by and brought a boatload of magazines. Most of them are cooking magazines so I now have several recipes set aside for Thanksgiving and, thanks to Oprah, I am on my way to “finding and fulfilling my life’s purpose.” :)

Speaking of food (can you tell I’m obsessed with it right now?!?!), I just have to clarify to Melly that I will never give up chocolate, no matter what a doctor tells me. My room is stocked with organic dark chocolate which, as far as I can tell, doesn’t contain lactose and is helping me maintain my sanity in small bites throughout the day.

What else have I been up to? Biking, meditating, organizing Christmas lists, looking at plans for a Disney vacation and thinking about my own future “happiness project” that I am recruiting some of my friends to join me on. For the moment, it’s all keeping me in a good place.

Day 134

October12

Yesterday I finished with chemo for a while! As part of the treatment, they gave me two bags of IV Benedryl and four, very large bags of saline fluids to protect my kidneys. Let’s just say I was out of it most of the day and night after we started and I woke up looking like a watermelon head. When they weighed me this morning I just laughed because I supposedly went up 6 pounds from yesterday! All those days at home of eating and eating and all I needed was a little IV fluid. If I could keep it on, I would look like a watermelon but I would only be 3 pounds away from my normal weight. I’ve been told to expect that I will be peeing all day so no such luck.

So I have two days off now. My blood counts went back up again this morning, but the doctor explained that what my counts are doing is actually a good thing because it means (in theory) I have should have a shorter period of time in the really low range. It will take several days for my counts to start dropping now but we will still do the transplant on Thursday. Once the stem cells are transfused, it will take those cells a few days to make it to my marrow and start producing on their own. The idea is that everything should overlap nicely so that my new cells are going into production as the last of the old cells are clearing out. It’s all very scientific and something they have researched and studied and know how to time. I just have to sit back and try to stay strong and healthy and hope for no crazy side effects.

For the next few days, I plan to finish up some books and start doing some artwork. I’ve been very inspired by my “Happiness Project” book. This is the third or fourth place that I have read about looking for our keys to happiness in our childhood experiences. What is it that we would do for hours on end that would take us completely out of this world and make us feel happy? For me there were many things, but one of them was artwork, which ultimately led to my career. Although I am quite lucky to work in graphic design, it has been years since I’ve really hand-drawn or painted anything. I plan to work on a portrait of my kids.

Since I fell asleep last night before blogging, I just want to thank Robyn and my dad for coming down for a visit. Dad tried to bring me some lactose-free cheese but it was made with pasturized cow’s milk and the nurses turned it down. With that, I guess I am really doing dairy-free for a while now. Once I am out of the neutropenic phase, I will be allowed to have dairy with lactose pills. I stopped drinking cow’s milk about a year ago but not eating cheese is starting to feel like torture. I ordered a grilled cheese sandwich for lunch today and am curious to see if they will let me eat it.

A couple of people have asked about bringing me food. I am not allowed to have anything now from restaurants, no dairy and nothing undercooked which leaves only home-cooked meals and I don’t expect anyone to start cooking for me. I do truly appreciate the offers though!

Day 132

October10

My counts started to drop a little today so I guess we are going in the right direction now, though I’m not looking forward to the bottoming out process. That’s when all of the side-effects start. But, that’s also when they can transplant my cells and move on with this whole thing so it’s all good I suppose.

I did the usual today – eat, ride the bike, some weights, a little yoga and lots of reading. I can’t believe how quickly I am reading through some of my books. I am enjoying it though. I am not enjoying the food at all, however. The menu selections for this unit are severely limited because of the special diet needs. I don’t know how anyone could survive on what they are offering. It is so strange to me that cancer patients seem to have the worst nutritional options in a hospital. So fine, I’ll take the “potato stars,” and the “roast chicken,” but give me more than 3 bites of potato and chicken! Okay, I know I shouldn’t complain. It’s just hard to go from trying to consume 3,000 calories a day to barely being able to come up with 1,000 to consume here. I’m inhaling the Ensures to try to compensate.

Mentally, I’m remaining sane so far. Just one more day of chemo left! I am having a hard time dealing with the fact that I feel like my children’s lives are moving on without me, like I’m being left out of changes at home and I’m no longer a part of the family I created. It’s probably not as bad as I’m making it sound, but my biggest struggle has been learning that I have absolutely no control over what happens at home right now and the only thing I can do is sit in a hospital room and fight for my life so that soon enough I can go back to it. Yes, the life I left at home must go on without me there, but it is painful to feel like I’m being disqualified from being a part of it because I got sick. Aside from my attitude, there is nothing I have any control over right now. It’s not that I have a need to control things, but I have gone to the polar opposite of the spectrum where I am helpless to be a part of anything. I know it’s temporary and perhaps I’m just using this post to vent frustrations right now because I have no way else to do it. There are so many things I have been open and honest about sharing with regards to my illness, but there are so many other fears, frustrations, happy and sad things that circulate each day and remain unsaid.

My aunt is leaving tomorrow and, although I won’t be there to see her off, I am sad already that she is going. I know there will be many people to jump in and help with the kids but she is the next closest thing to my mom and I am so grateful she is here to be a part of their lives. Not that grandpa isn’t important too ;)

I’m off to read more about Happiness Projects and the history of Hinduism (as it relates to yoga). Have a good night everyone. Hug your children a little tighter for me tomorrow and be sure to take a moment to stop and savor an ordinary moment.

Day 131

October9

Strangely, my blood counts are going up. I guess my immune system is fighting the chemo! It could be normal but I’m eager to see what my doctor has to say about it tomorrow morning. I hope it doesn’t mean it will take a long time for them to come down. But it wouldn’t be me if there wasn’t some crazy delay involved so we’ll just wait and see.

I started to go a little stir-crazy today but I did finish reading “Have a Little Faith,” the second book I’ve finished since getting here. And I started reading “The Happiness Project” and “Living Yoga.” Fortunately, my dad and Heather and Anya also came down tonight to help maintain my sanity. It was good to see everyone. Thanks Dad, as always, for all the treats.

My diet is pretty restricted now. I’m not allowed to have anything with lactose in it which is really getting in the way of my love of yogurt and cheese. Fortunately, they make a halfway decent grilled cheese sandwich with low-lactose cheese on it and that has been satisfying the cheese fix. I’m also still allowed to eat eggs so I am able to get some dairy in. Other than that, I’ve been eating a lot of bread products, protein bars and dark chocolate. Hardly well-balanced, but it’s keeping the weight on.

I want to thank Michael for sending me a great picture of he and his son walking the Leukemia & Lymphoma Society’s Light the Night walk in Rockville tonight. There is another walk in Baltimore on November 14th. I probably won’t be able to do that walk myself but I hope to be able to generate some support for it.

Day 130

October8

So far, so good. I don’t know why, but I am feeling really comfortable and at peace with this phase of the journey. I really like my room and the staff of the bone marrow unit is great. I am enjoying the fact that I see my doctor everyday and not a rotating staff of residents and various other cancer doctors. There is a weird sort of coziness in being here. The unit is much smaller and the staff much smaller. Although I can see that I will get claustrophobic at times, I was able to get in almost 2 hours of workout time today as well as a great meditation session. There is an exercise bike right across the hall from my room – do you think it’s meant to be?!?! To add to my great view, I can see directly into the pool at the top of the nursing school right across the street. It has been fun and inspiring to watch everyone swimming at night. When I make it to my triathlon training in a few months, that might be me ;)

Today was more chemo and an ultrasound of my abdominal area to check on the status of my liver infection. I don’t have the results yet. So far I have had no side effects from the chemo (knock-on-wood!!!), but these things start to show as your counts drop. I am keeping my fingers-crossed that things go smoothly. I feel so much stronger coming into this treatment and it has certainly helped me mentally that I am able to exercise, eat well and not panic about fevers.

I must admit I am also taking more advantage of the time alone. I have enjoyed being able to read my books and magazines. I just finished “Anticancer,” a fantastic book written by a doctor who beat brain cancer twice. He discusses the importance of a healthy lifestyle including diet, exercise, good relationships, stress reduction and a positive outlook on preventing and fighting cancer. I highly recommend this to book to everyone. Next up, I plan to finish “Midnight in the Garden of Good and Evil,” a book I started when I was pregnant with Kieran! Following that, I will finish Mitch Albom’s “Have a Little Faith,” Christy Turlington’s “Living Yoga,” and then, hopefully starting and finishing “The Happiness Project” and a couple of other books given to me as gifts during my last stay. I am also listening to Dr. Andrew Weil’s “Mind Body Toolkit” on my iPod. It teaches breathing techniques, meditation, guided imagery and sound therapy for healing. If nothing else, it is a wonderful reminder to focus on the positive when I wake up in the morning and before going to sleep at night.

I had a great visit with my Aunt Helen, Mike and Peggy today. Claire also dropped off a terrific collection of books for the kids and a batch of matzo ball soup I can’t wait to dig into. Brian is on his way to hang out for the evening.

Looking at the calendar, I have settled on a goal of going home on day 150 – wouldn’t that be nice?!?! That would be exactly 3 weeks from yesterday and put me home in time for Halloween. I know I will probably be here longer than that but I like round numbers so I’m focusing on that for now. In all seriousness though, after the last time, I’m not putting the pressure on myself to meet these arbitrary deadlines because it will only lead to disappointment. As my babysitter suggested, if I’m still in the hospital on Halloween, I’ll dress in a Supergirl costume (though Ty would prefer Princess Leia) and I’ll make the best of it, knowing I will get home soon thereafter.

Oh, one more thing I must do before I go is to wish my wonderful nurse Roseann the very best of luck in the World Championship Ironman competition in Hawaii tomorrow. I know she will do great. This is the completion of an enormous personal journey for her as well, but most likely the beginning of so many more things to come. I will be thinking of you all day Roseann! Close your eyes, savor the moment and let the wind carry you.

« Older EntriesNewer Entries »