Gently...

Why is it OK to hurt people? I think the intuitive response for most is “it’s not.” But how true is that? I thought at one time that we are never supposed to hurt anyone. That if life came with a rule book, that would be Rule #1. Yet it is not possible to never cause anyone pain. I would imagine that certain, more spiritual, deeply religious, or Zen societies strive to never cause pain, but even Jesus certainly hurt people. Leaving behind people who loved him to move on and do what he was meant to do surely caused pain to many. Is it ok to hurt people if your intentions are good? Regardless of intent or reasoning, pain is still pain.

If, perhaps, we are supposed to endure pain ourselves rather than hurting others, how far should we go with that? Where would we draw the line? Should someone stay in an abusive relationship because it would hurt the other person to be left? I guess this would never even happen if we all lived by the same rules of conduct, but we don’t. How much responsibility, then, should one take on? Do we have more responsibility to endure more pain ourselves just because we’ve considered this topic? That hardly seems fair. Maybe ignorance is bliss.

There are so many levels of hurt, and so very many situations that are hurtful. We can hurt someone’s feelings simply by saying something that they take differently than it was meant, or by, say, leaving them out of plans for one reason or another. We are hurtful through misunderstandings, and by having different needs. We hurt others by making choices that do not necessarily coincide with what someone else may want. We hurt others out of anger, retaliation, fear, need, desire, hate, and love. I’d venture to say that there is not a single emotion which has not at times caused pain. We are social creatures, yet it seems the only way to try to avoid hurting people would be to remove yourself from society -- never develop relationships, and never even speak to others. Yet if we were to do that, that act alone would hurt those who love us and are left abandoned. We simply cannot escape hurting others.

Obviously we are meant to hurt others at times. It seems cruel and wrong, but it must be so, and there must be a reason for this. We learn a lot by being hurt. Our personalities probably develop more so based on our emotional injuries than on any other experiences. Our painful life lessons are a huge contributor in how we develop and what choices we make further along our path. Is there a black and white answer to what is acceptable to do to others and what is not, or is that line within each of us? I’ve spent a lot of time thinking about what is truly right, and the thought that keeps entering my mind is “tread gently.” I know there will be situations when I will hurt someone. I think the best way to handle these situations is thoughtfully and empathetically. I don’t always do that. I think most of the times I’ve been hurtful, it’s been a quick, knee-jerk reaction where I just don’t reflect on all perspectives of a situation before I act. There are times when someone pisses me off and I react by saying hurtful things; at these times I need to let go of anger, as it doesn’t benefit anyone. There are times when I hurt others just because I don’t think about how they would feel; I need to reflect more often on how I would feel in other peoples’ shoes. And there are times when I hurt others because I have to do what is right or best; these times I need to handle carefully and with forethought.

Alas, we cannot avoid causing others pain always, but we can at times avoid it, learn from it, or do so more gently.

People, Meet Chemo

Another chemo day, so again I am up all night. Maybe chemo nights will be the only times I get around to blogging. I’ve learned a lot about my chemo the past few weeks, and how it’s affecting me. A lot of things that I thought were happening just because I’m getting older, are actually side effects of chemo.

• My eyes have changed color from dark brown to light brown
• My eyesight is getting worse
• My eyes water a lot (very messy if I don’t use waterproof eyeliner)
• My eyelashes have gotten super short, thin and brittle
• My hair has thinned significantly and changed to the consistency of thin straw
• My mouth is so sensitive that I have to use non-minty toothpaste (this really sucks!)
• I cannot eat or drink anything even remotely cold and sometimes even room temperature is too cold, so I am unquenchably thirsty every other week (this is by FAR the worst of the side effects)
• Foods that are too hot, or too cold hurt my mouth
• I tan very easily (bonus) but it fades very quickly (bummer)
• My hands and feet are very sensitive to pain
• My toenails will split and practically fall off with the slightest stub
• I have hot flashes and night sweats daily
• If I walk barefoot in my house I get pins in my feet but if I put socks on, I get hot flashes
• I’ve been forced into premature menopause, and all the joy that goes along with that
• My feet hurt
• My arms and legs often ache (this one is not actually from the chemo but from the shot I get after every chemo to up my white blood cell production)
• I sometimes get so weak walking even short distances, that I have to sit down and rest
• I get extreme headaches and eyeball aches that no drugs will touch
• I have learned that there is an extreme difference between queasiness and nausea. I teeter between both of them – most often queasiness
• I severely crave carbs: bread, pastry, pasta, bagels, potatoes, oatmeal. On chemo weeks, that’s about all I eat

I had a port implanted in my chest last year that they use to give me the chemo. They push a needle that is about an inch long into it. That is not fun.  Then they pull on the syringe at the end of a tube that is connected to me to see if they get blood, meaning that it’s in right. This grosses me out so I don’t look. Then they “flush” the port by pushing into it, a syringe of saline. I hate that part. It’s disgusting. I can’t really distinguish if it’s a taste or a smell that it causes, but I try to keep some gum in my mouth and when they flush I chew it fast to try to avoid it. Next they hang a plethora of bags from my IV pole and start pumping them in through the newly-accessed port. At the end, about 4-5 hours later, I get a “push” (a huge syringe full) of one of the chemicals called 5-FU. I kinda like the name of it. When I leave the cancer center, I have a pump tethered to my port, which pumps 5-FU for the next two days. On Friday afternoons, I go back to get the pump removed, and get a shot of Nulastin, which will increase white blood cell production. They do this because chemo will severely lower immunities. It’s a very thick shot that I get in my upper arm and it hurts. It’s a relief walking out of there on Fridays without the pump though. Unplugged.  I do this every two weeks, forever.  I may get an occasional one-month break, which basically means skipping one treatment, but for the most part, I will do this for the rest of my life.

I still get queasy at the mere thought of chemo, and whenever I walk into the Cancer Center. It’s disgusting and depressing. One day my little sister Al came with me on a Friday for pump removal, and found the atmosphere so sad that she immediately had to leave and waited outside for me. I try to look at it from different perspectives, but it rarely helps. At first I would concentrate on visuals of the chemo battling to kill the tumors. This helped make it less gross for a day or two but soon stopped working. I tried looking at chemo days as my “job” that I have to do so that I get to travel on my good weeks. This didn’t really work either though. I bring all kinds of stuff with me: blanket and slippers, computer, movies, games, books, crayons. I get comfy, chat with friends, and even had a pizza delivered today. It helps the time go by, but does not distract me from the fact that some seriously nasty poison is being pumped into me for about 5 hours, and will make me sick for about 5 days. As the day goes on, I can immediately start feeling the effects: cold sensitivity, queasiness, and a cloudy-headedness. I start dreading chemo Wednesday on the preceding Monday. I hate it.

On a brighter note, I leave Saturday for Cancun. I will be there through the next Friday the 25th. I will then be home in Greensboro for a week for chemo, and then leave again on July 3 for a 7-day cruise with my girlfriend Cynthia to Cozumel, Grand Cayman, Belize, and Honduras! Can I get a "hell yeah!"?  Cyn is awesome and super fun so it’s really going to be an amazing trip, AND... this gives me a reason to wear some of my more formal dresses that I never get to wear. I should try to find a tiara! Or a boa! Yeah!!!  Joss and I were going to play dress-up that way on our January cruise but we never got around to getting them.

After the cruise I am home again for another chemo week, and who knows after that. Soon I am planning to get back up to Maine to see my Dad and Diane, to P-town (MA) to see my sister Christine, back down to Florida to hang out with Neil, Al, and Don & Jeannie, and also to some more local beaches. My doctor says I look well rested, and she is glad I am not working and am traveling and visiting family. It’s funny that one week I feel so crappy and the next I feel pretty good and am able to get away. I am not sure how long that will last, so I am trying to cram as much living in now, before I get to the point where I cannot. Usually the first few days I am away are not great because they are so close to chemo day, and I just rest a lot, but by the Monday after chemo I start feeling better. I know that’s it’s made a huge difference in my attitude, sense of serenity, and health to be able to relax with family, hang out poolside, or on the beach, and just not worry about anything. I tend to totally forget about cancer when I am away from Greensboro. Maybe that’s why I never stay here that long. I have stopped checking my work emails several times a day like I was, because it stresses me out so much. Everything seems to be under control without me anyway. I really just want peace at this point. Peace… but adventure!

I know I still owe blogs about Florida and Philly, but this is what was on my mind right now. Hope to get the others down at some point, but, let's face it... I may never. I will at least put up the pics of James and Oliver buried on the beach up to their necks. Priceless!

(here is a link to the Florida pics on my facebook:
http://www.facebook.com/album.php?aid=2038593&id=1365674995&l=e882acd35d)

Enjoy every day!
Go home by 6:00... don't let work be your life.
Spend time with your family and tell them you love them.  They won't always be there.
Plan a vacation, or even a day trip.
DO FUN STUFF!!!  You will NEVER regret it, but you will regret it if you don't.

I love you all.

News From Philly

After a rather entertaining hold up at the airport which resulted in my trading a half full 4 oz bottle of baby oil for a personalized TSA report, I arrived in Philly. The Center, CTCA, met me with a limo, and a chauffeur holding a sign with my name. (I always wanted to get picked up that way.) He took me to CTCA and I started my day there with lunch before my appointments, which started at 1:00.

I was directed to the dining room where I could choose, buffet style, anything I wanted for free. I have been on cruises with worse food than CTCA. The food is amazing!! Plus everything is nutritionally enhanced and geared towards helping the issues that cancer patients face. I had an organic, sugar free lemonade, some gilled tofu and vegetables thing, olives and peppers from small olive bar, some other yummy grilled vegetable thing, potatoes in like a casserole, bowtie pasta with feta, and a chocolate-cream cheese cupcake.

After lunch I started appointments. I met with a nutritionist and a naturalist. Both asked about what side effects I suffer and such, so that they could offer me suggestions on foods and supplements to help. I met with nurse who verified my cancer history and asked about more side effects. Apparently some things I’ve been experiencing are from chemo and I had no clue. They address everything here, on a very personal level, and try to make everything better, not just treat your cancer.

Next I met with my doctor, Dr. Klimant (Kle-MONT) who is from Germany. He told me a few things different from my oncologist back home (Dr. Odogwu). First thing, which I was glad to hear, is that one of my current chemos, Oxolyplatin, or something like that, which is the one I hate the most because it gives me the problems with cold, would only be given to me for a total of 12 treatments (tomorrow’s is #10) and then never again because it’s found to be ineffective after that. This is very encouraging as it would make remaining on chemo far less uncomfortable. I am not sure if Dr. Odogwu had that same plan because she is vague and limited in what she tells me, and mentioned just staying on this regiment until it stopped working. Mostly what I hear from her is “I don’t know” and “we will see.”

I also asked Dr. Klimant about my expected time left. Although they are very hesitant here at CTCA to put a time on anyone (they are quite against that) I asked, statistically speaking, what he’d expect and he said that he would guess that I’m likely to have between 1 and 2 years. He said I am not a candidate for directed radiation since my tumors are so splattered, but may potentially be, down the road, for some other type of chemo or something that unfortunately I’ve forgotten all of the details about except that it has something to do with genetic testing they are doing. I was rather bombarded with information. He also said that the other 3 of my 4 current chemos, I would stay on for a while. Lastly, we talked about my desire to spend a month or so in Europe, and he said he could definitely work that in. Overall he is much more optimistic and informative than Dr. Odogwu.

While two years may not seem overly optimistic, it’s twice as long as one year. It means seeing James turn 3, and hearing him call me Gramommy. It means several more visits to my Dad and Diane in Maine, and several more visits to Don, Neil and Al in Florida. An extra birthday and an extra Christmas. More stamps in my passport. Two is definitely better than one.

Today I had my chemo. The infusion room here is so much better than home. The center at home is dreary and sad. Here it’s bright and happy with TVs for everyone and snacks all around. The patients even talk to each other and laugh. At home they just sleep. Here they bring you a menu to order the amazing food from the dining room, and bring it t you. At home you can have a half of sandwich with a slice of turkey on it, or cheese and crackers, both of which are cold so you better get them before the Oxolyplatin. Here they give you many more pre-meds to avoid nausea and neuropathy, and they tell you everything you get and what it’s for. At home I get a mystery mix with some steroid for nausea, and I think that's it but I am not sure. And here everyone comes to you for tests, information, or just to check on you. At home they sent you here and there to get this test, pick up those results, bring them to this doctor, etc. Everything is easy and pleasant here.

I have the option to move my treatment here, and am considering it, but there are a few things I need to think about. First, travelling every two weeks could get old. Although I do like travelling and it seems as though there is some fun stuff to see in Philly. And while CTCA pays for flights and feeds me delicious foods, the hotel is still $45 a night on return trips and 8 nights a month of that is not really feasible. You’d think that since they cover everything else, they would cover that too. I am meeting with a financial counselor tomorrow so maybe they will have an alternative.

Oh, the center also offers free massage and reiki. I tried to get a massage scheduled but they were full and were going to call me if they can get me in Thursday or Friday. And the dining room will make fresh juices with whatever you want, smoothies, and soy shakes! They keep warm drinks on hand for those of us on Oxolyplatin. They give you ginger candies to take for nausea, and they work so well I was able to do the Pat’s vs. Geno’s challenge tonight….steak and cheese on a chemo night!! (Blog on that to follow soon.)

Tomorrow/today (Thursday) I have a free day and plan to look around and play in Philly. Or may just stay in this bed for half the day, as it’s super nice and I’ve been up all night. It’s a sleep number bed and I’ve found it to be even more comfortable tonight than last night. I have more blogs to write so check back.