Memorial Day

I am thinking that today is a good day to be alive even as we honor the memories of those brave men and women who gave up their lives in service to their country. It's a beautiful sunny day ... sunshine and green, green grass, and Sarah is home, and my world is just right.

I am still suffering the effects of the TCH infusion on Thursday. I am still fatigued with that body numbing tiredness that knocks me out, and robs me of precious minutes. And eating is till hard ... everything I eat causes me GI pain. Nothing tastes normal but I am convinced that I will always be able to find something that will be edible for the moment.

This weekend it is sweet ice cold watermelon and in a few days it will be something else. It just seems a little odd that a big part of my world now is finding foods that I can eat and forcing myself to eat just so I can fight this monster.

David and Sarah are home for dinner, so we picked up some hormone-free ribeye steaks from Tom Leonards, and marinated them for about six hours. Beef still tastes good but I will have to split a steak with Sarah because a whole one is just too much. I can still eat rice so I cooked rice with chicken stock and topped it with fried shallots and crispy bacon. I also made some oven roasted potatoes which I am not always sure I will be able to eat. Potatoes are iffy ... creamy, soft food does not always taste good. I definitely cannot eat anything creamy and sweet. I am not doing well with sweet things.

But I am grateful for today. I will gladly take it.

Half Way Through TCH

When I first started, 18 weeks looked like such a long stretch of time, but now that I am half way through my TCH infusion and have had 7 total infusions, it seems so doable. The clue is to take one week at a time and check it off your list. My new mantra with the treatments is "live in the moment" -- just look at the step in front of you and conquer that before you put your foot down on the next step.

It is the same at work. On the week after chemo when I am weary to the bone and my concentration is bad, I set myself small doable tasks and I tackle one thing at a time. Small projects completed will add up to many jobs done in a day. Or if I have a big project, I do small complete tasks and before I know it, the project is done in a few days and I do not feel overwhelmed. You just have to accept that your life is different now. You have to fit this crappy cancer into your life ... you must not fit your life into it ... this gives it too much power over you, and you will never win.

I have come to accept that each day, each week will be different for me. Today for the first time my absolute neutrophils were 7.5 ... normal for the first time in seven weeks! Each week I give myself a little treat after the infusions. Tonight it will be eating popcorn and watching The Fighter. Last week it was lunch on Friday at the Irish pub with some friends. Little things to celebrate the end of another week of infusions and another week of surviving.

I have also signed on to be one of 60 people in a Bon Secours nursing survey of women with early stage breast cancer and how they cope. This will not help me but it will help all those other patients after me. I was happy to do it. I now belong to a sisterhood (I know men are affected by this too but it is still overwhelming female) and I believe it is my duty to do this and I do it gladly.

I am still trying to find out what God wants me to do with this.

A Decent Week

This has been a good week so far. I have been able to exercise and eat well and I've had good energy for the most part until today. I am a bit tired today and had to take a 45 minute nap and I am still yawning like crazy. Looks like it is going to be an early night for me ... the bathrooms will just have to wait till tomorrow.

It's getting harder and harder to keep the energy up but the end is in sight. On Thursday when I get my third Big Witch chemo, that will put me smack in the middle! And I will have 11 more infusions to go in this cycle.

My life is still chugging along.

Living Proof

I have just finished watching the movie Living Proof about how Dr. Dennis Slamon developed Herceptin. It has just occurred to me that a decade ago, before Herceptin, my HER2 positive cancer would have been a death sentence. It just seems a little strange to me that until this moment, I never really realized what my "aggressive" cancer meant. I knew that recurrence was high with this type of cancer but I never really thought that it could kill me.

But because Dr. Slamon never gave up, Herceptin was born, and I get a chance to live. I have so many people to thank for my life ... it just seems to be a debt I will never be able to repay. All I can promise is that I will not waste my life ... I will live it the best way I know how, and I will always be grateful to the many people who have given me this second chance.

And now I finally understand why every single doctor who has looked at the size of my tumor and then at the HER2 positive nature of the cancer has been amazed that it was discovered so quickly. I see the hand of God in this.

I am deeply grateful and very humbled.

Crappy Cancer ...

Today I found out that a friend and former neighbor in Smithfield has been diagnosed with a rare and aggressive form of breast cancer. My heart breaks at the news. We had kept in touch for over a decade after we moved from Smithfield but had lost touch the last two years and I was thinking of her today and googled her ... only to find out the horrible news.

Here we are ... two women fighting the same monster but doing it differently ... I am doing it privately and Connie's battle is a public one. It is just who we are. My whole life has been about finding the strength within ... hers has been filled with volunteering and public deeds. I cannot imagine that our hopes are very different ... that we live to see our children realize their lives; fall in love and start a family of their own; hold our grandchildren in our arms and be grateful that God has given us the gift of years that this terrible disease tried to take from us.

Why can't we find a cure for this crappy disease? Why? In the 1700s my Scottish ancestor, Cadwallader Colden, wrote to Benjamin Franklin about pokeweed and breast cancer ... looking for a cure even then ... little would he know that some three hundred years later, we are no closer to defeating this monster.

My prayer today is Dear God, thank you for the advances in treatment that has made chemotherapy tolerable enough that I don't have to tell my family ... "just let me die" but God we need a cure for this ... too many good lives are being lost.

What a Week!

This is my second Big Witch chemo ... four more to go. I got tired earlier and the fatigue lasted longer this time around. Yes, I know ... the cumulative effect, and boy can I attest to that! I was knocked out Friday night and was so tired all weekend-long. I spent Mother's Day on the couch snuggled with Sarah and I couldn't ask for anything better. John picked up dinner from Red Robin and I was able to eat about a quarter of the burger.

My absolute neutrophils plummeted to .5 which is the lowest it has ever been and so I have been restricted to the home and have to do the usual avoiding crowds, etc., etc. Explains the extreme fatigue too.

I couldn't wake up on Monday so that was a work from home day and thank goodness I had two ABA projects to work on.

I got a bit grumpy too ... I am attributing it to the extreme fatigue that not only could I not walk straight but I couldn't think straight either. God will forgive me.

My hair is continuing to fall out. There's still a complete thin layer all over my head but last night I got tired of sweeping hair off the floor, brushing it off clothes, picking it out of my comb, and I just cut it all off. I now have sparse spikes all over my head ... I look like an inmate at a POW camp, but I have come to terms with it. In August it will start to grow back. I've been walking around the house bare-headed. I know a lot of this freaks Sarah out but she says she is getting used to my bald head!

This no hair thing is a little freeing ... better than dealing with falling hair.

My crappy week is at an end ... I look forward to a new week.

An Old, Old Woman

Today I look and feel like a 90-year-old woman. My hair is continuing to fall out but a thin stubborn layer is still clinging on to my scalp. I am so tired that I can barely shuffle to where I need to be. Yesterday I could not stay awake for more than 10 minutes at a time. I had hoped that today would be better but I could not even wake up this morning.

Yes, I am whining today ... it's a "poor me" day but tomorrow I'll feel ashamed of myself. I am bloated and in discomfort and the thought of food makes me sick. I have lost another three pounds over the weekend simply because nothing tastes good. I have to force myself to drink to stay hydrated ... it's either drink or end up in hospital with IV fluids. Apple slices are tolerable but even those are starting to make me gag.

I'm off to see what work I can do from the couch at home.

Big Witch Chemo

Arrived at the Infusion Center for my 8:45 am appointment and was delighted to find that I had been assigned my good nurse Maria again ... yippee! I did not wear my wig to the center since although I have been losing strands of hair in the shower and when brushing, I do not have bare patches on my head. Besides, if my hair started falling out in clumps at the center, it wouldn't shock anyone ... surely they would have seen this before. But I did pack two scarves just in case.

My CBC was a mixed bag. My absolute neuts went up to 13.6 from the miserable 1.00 last week. This pushed it over the normal range of 1.8 - 8.0. This usually means that my body is fighting an infection somewhere but I have no temperature or pain ... there are no physical manifestations of infection any where. But the nurse had to get approval from my oncologist to treat me. Got it after about an hour.

My premeds this time were Pepcid, Benadryl, Tylenol, Aloxi and Decadron. In addition I will have to take the prescribed Decadron for three days -- the day before chemotherapy, the day of the chemo and the day after. This is to combat the nausea I had after the first TCH infusion.

I also learned that if you give Decadron too fast it causes what the nurses call "Hot Pants" syndrome which I experienced during the first infusion. It is the weirdest sensation ... you feel this intense hot itching sensation in your entire pelvic area which spreads to your head. This time Maria gave it to me over a 30-minute period and I did not have "Hot Pants"!

I know it is too much to expect not to have a repeat of that horrible Saturday ... why should I be different from anyone else going through this? I can already feel my body changing. Oh, how I will hate the days coming up. But I know it will end ... so I can do this ... I can do this.

Soup for My Soul and Body

 Tomorrow is my Big Witch chemo (TCH) so I am eating light today and wanted to make a batch of soup for dinner tonight and which I could have tomorrow and Friday as well. This recipe came from The Cancer-Fighting Kitchen by Rebecca Katz with Mat Edelson (thank you to my friend Donna), but as usual I modified it to use what I had in the pantry. I really liked this soup ... it reminded me of the broth soups I had as a child ... very yummy. I halved the recipe (I am including the full recipe ... just cut the ingredients in half). My substitutions are in parenthesis and are already in the halved amount.

 Chicken Vegetable Soup with Ginger Meatballs

 

Meatballs:

1 lb ground organic dark-meat turkey or chicken

2 tsp. grated fresh ginger

1 tsp. minced garlic

1/4 cup fresh parsley, finely chopped

1/2 tsp. sea salt

Pinch of cayenne (Paprika)

1 egg, beaten

1/3 cup cooked white basmati or jasmine rice

Soup:

2 Tbsp. extra-virgin olive oil

1 yellow onion, diced small

Sea Salt

1 large carrot, peeled & diced small (1/2 large sweet potato)

1 large celery stalk, diced small

2 cloves garlic, minced

1 tsp. grated fresh ginger (minced)

8 cups organic chicken broth (32 oz.)

1/2 cup fresh or frozen sweet peas

1/4 cup fresh parsley, finely chopped

1/4 cup fresh basil, finely chopped (1 tsp. fresh thyme)

1 lime, cut into quarters for garnish 

1. Meatballs: Line sheet pan with wax paper (I just used a flat platter). Combine the turkey/chicken, ginger, garlic, parsley, salt, cayenne, egg and rice in a bowl with a folk (do not over mix or meatballs will be tough). Wet the palms of your hands so the mixture doesn't stick, roll into 1-inch balls, and place them on the prepared pan. Place in fridge while you prepare the soup.

2. Soup: Heat the olive oil in a soup pot over medium heat, then add the onion and a pinch of salt and saute until translucent, about 4 minutes. Add the carrot, celery, garlic, ginger, and 1/4 teaspoon of salt and continue sauteing for about 3 minutes.

3. Pour in 1/2 cup of the chicken broth to deglaze the pan and cook until the liquid is reduced in half. Add the remaining chicken broth and 1/4 teaspoon of salt and bring to a boil. Lower the heat to maintain a vigorous simmer, then gently transfer the meatballs into the simmering broth. Cover and cook for 15 minutes.

4. Add the peas and cook for another 3 minutes. Stir in parsley and basil. Serve each with a wedge of lime.

5. Storage: Store in an airtight container in the refrigerator for up to 5 days or in the freezer for up to 2 months.

Note: The halved recipe makes 9 meatballs, making 3 meatballs per serving ... it was just right for me.

The Story of Hair

I am on Day 17 of chemo and I think I am starting to lose hair. I say "I think" because my hair is not coming out in clumps but more is coming out with regular brushing. I have been carrying my wig around with me for about a week now in preparation.

I am ok ... I am coming to terms with the fact that I will lose my hair. Why is this such a big deal? For me it is a reminder everyday that I have this disease ... it slaps you in the face every time you look at a mirror and touch your head and feel nothing where hair once was. Right now I see nothing outwardly of what my body is fighting ... I am healing well from the surgeries, I am working, cooking, cleaning and sleeping well. My activities have not changed much except for the naps I need every afternoon and having to go to bed an hour earlier most days. And having to stay away from people. And of course the change in taste. All those you fit into your life ... you can learn to live with almost anything.

We learn to cope with death and loss, illness and pain. Baldness? I suppose that too ... I shall find out soon enough.

And yesterday I received in the mail from a friend a book entitled It's Not About the Hair: and Other Certainties of Life & Cancer by Debra Jarvis. Well, we shall see ...