Tuesday, September 29, 2009

Close Your Eyes and Stick

Well, I did it! I injected myself today with Neupogen! I received word last week that I was finally approved for self-injection (after the doc's office filed the “right” paperwork and a bunch of phone calls). So, I observed the administration of the last two shots (I never watch when I am being stuck), and with the nurse by my side, I stuck the needle in! Okay, I was sweating a bit and had to take off my jacket. And I felt a little lightheaded – but I didn't pass out!

It wasn't as painful when I did it, I have to say. The medicine burns when it goes in – the needle itself really doesn't hurt. I have been taking the injections in my thighs – plenty of meat there! Perhaps I took a good pinch of flab – or perhaps it was the angle, but it didn't hurt – and that is what I have been dreading! How do you resist the impulse to pull out the needle when the stuff burns?!

Being able to self-inject gives me so much more freedom. And, it works like clock-work. The pharmacy gets the orders, ships the meds Fed-X, it arrives the next day and goes in the fridge. Next time, they'll give me a call and schedule the 2nd shipment. When I travel, the doctor will give me a note to get on the plane, and the meds will board with me in a little cooler.

The weekend was really good. I guess all the steroids I received on Thursday really helped. My energy has been good and I've had little nausea. We had a great weekend down the shore. Our friend, E.A., let us use her lovely home that overlooks the wetlands in Ocean City. We met up with two other couples and rode bikes into Avalon. It felt good to get some physical exercise, and the weather was perfect for the ride.

We celebrated my dad's 89th birthday and my sister's 60-something on Sunday. Joan made her delicious pork shoulder, au jus, along with haricot verts (almandine) and roasted sweet and white potatoes. The cake was a carrot cake from Whole Foods.

The weather was perfect today, I conquered my fear of shots (well, self-administering), and today was another good day!

Thursday, September 24, 2009

Wild, Wacky Chemo

Today was the third treatment in this chemo cycle. I received the trio; avastin, taxol and carboplatin (carbo). All went along well, and we were actually a little ahead of schedule with an estimated departure time of around 1:30 p.m. (We got there at 8:00).

While I was receiving the carbo, the last chemo drug, my hands felt strange, tingly, not quite itchy. I looked down to find red splotches on my palms, and my fingertips were turning red. There was also a tingly sensation around my mouth. I got the nurse's attention and she came over right away. It appears I developed an allergic reaction to the carbo. The redness traveled to my face around my mouth and nose and my eyes started to swell a bit with the rims turning red, along with the tips of my ears. It was a really interesting look. And I was wearing my silver-fox wig with a white blouse - so the color really popped!

The nurse brought along the CRNP (or nurse practitioner), and they stopped the IV, shot me up with Benadryl, pepcid which acts as an antihistamine, and a steroid. My nurse was very calm and matter-of-fact. I was calm, Thierry was calm and reading his magazine - it was all pretty weird - but after about a half-hour, 45 minutes all the redness was gone. I guess this could have been serious (duh!). They checked all my vitals a couple of times - all was well.

Apparently this is not uncommon, to develop a reaction to carbo after receiving several treatments. The nurse said what usually happens in the future is to try and re-acclimate the body to the drug, starting out the next cycle at a lower dosage, then gradually increasing the amount to the recommended level. I really don't know what they will do if it happens again. The carbo is not typically part of the avastin/taxol treatment plan - although the Dr. at Fox Chase did say it is given if the treatment is not working. My doctor believes it helps in the treatment of Triple Negative cancers.

So, some excitment today - and oddly enough - even though it was long and a bit tiring (we got home at 4:00p.m), it was an ok day.

Putting a Lid on It

I did an awful thing last night, something I have really worked hard at not doing for many years. I talked about someone I really don't like to a “group” of people, violating one of my own rules. And I feel pretty miserable because of it. I actually had an out-of-body experience, listening to myself spewing, all the while thinking, Mary shut your mouth – but it just kept coming.

When my job developed into a “human resource” position that involved dealing with everyone that I worked with, even those I didn't particularly like, I realized that I needed to be very careful about what I said about people – and to whom. It wouldn't be too difficult to find yourself caught up in a major scandal or being placed in a very precarious position by saying the wrong thing about someone at the wrong time. Being in Human Resources required the ability to listen objectively to everyone and often mediating between opposing parties – taking no sides.

In business, learning how to play at politics, was a very important and necessary lesson, as today's foe becomes tomorrow's friend – or vice versa. So better not bad-mouth someone, even one on the outs, because in a year they could be in a position of power.

Another reason for not talking about people to others is that the listener to your opinion may start to wonder what you are saying about “them” when they are not around. I'll always remember the night I went out to dinner with two lady friends. The two friends were closer to each other than I to either of them. We saw each other at parties, special times of the year, occasional dinners, etc. The evening began on a great note, everyone catching up on recent events. One of the ladies (we'll call her friend #1) left the table for the ladies room. As soon as she was out of earshot, the other (#2) started in: “do you believe so/so; did you hear what she said.... what do you think of her hair....” all in a hurried, hush/hush voice! I just muttered, being a bit taken aback by the barrage of questions. Well, it didn't take long for lady friend #2 to have to make her trip to the ladies room. Just as before, “friend” #1 started in on #2: “do you believe #2, look at her weight, what about her hair....” At that point I was wondering if I should go to the ladies room or stay glued to my seat.

Okay, I am not an angel. Yes, there are times when I will chime in (even go on a tirade), comment on a friend's behavior, especially if it was bad, and I am "sharing" with a close friend – or with my sisters – boy can we do a number! But I think I try not to be cruel, and try to take the stance that people are who they are, take them or leave them. Often, they are left – as I don't believe in keeping negative influences in my life.

Last night I couldn't stop my mouth from running away with me. I have no idea what I was trying to prove. I think all along I had been looking for an opening and just took it. Trying to vindicate myself for decisions I made because of the bad behavior of another – and instead of feeling vindicated, I feel like a very bad, insecure person. It proved nothing except that I haven't learned to forgive – and I haven't learned how to move on. My ego still gets in the way (as my friend EA would say).

I don't know what is going to get me over that hump. If I went to church, they would probably say – forgive the person and then forget about it. If I followed Landmark Education they would suggest I call the person and straighten it out – which probably isn't a bad idea. Perhaps one day I will have that opportunity and I will try not to blow it by being mean. As they teach you in employee performance management – focus on the behaviors/issues/actions – not on the person (personal traits). And in marriage counseling – it's focus on how “it” made you feel, and not on “them.” In the meantime, I will work on keeping my mouth shut when someone's name comes up in conversation... and deal with “the person” face to face at the first opportunity.

It's been another beautiful day, and yet another lesson to master.

Sunday, September 20, 2009

Moving On

Today our neighbors confirmed that they have sold their condo and in a few months will move several blocks away. When I originally heard they were thinking of selling, I felt a tightness in my chest which I have come to recognize as a “sense of loss.”

The first time I remember feeling this way was when my childhood friend moved to Texas. She was the first person of any significance to move “out” of my life. “Out” being physical space in this case, as we still maintain pretty close contact. Even though our lives had taken many turns; she being a year older than I graduated school ahead of me, had a job before me, we both married and divorced (never at the same time); when she told me she was moving I was devastated.

The next great feeling of loss that I had was when my boss left the States to return to Holland. Work was the one area of my life where I felt like I succeeded. I grew a lot at my job; received my degree while working, got a greater exposure to the arts, and had an opportunity to grow professionally – all of which greatly built my sense of self. This I owed to my boss. I realize that my grief over his leaving also encompassed the end of an era as our company was working its way out of business. We had a great working environment, but it was my boss who treated me with respect and appreciated my opinion and judgment that really made this a formative period in my life.

Regularly, friends sort of fade out of the picture, so the loss of the relationship is less apparent. People move out of the area, change jobs, get married, have babies and form new circles of relationships that require time and attention.

Although I know our neighbors aren't moving far, I had found comfort in knowing there was someone down the hall that we really like and can depend upon to hold our key and keep an eye on things when we're not around. While we won't have the peace of mind of having good people/friends down the hall, we can do our best to maintain our friendship from a few blocks away.

The weekend is just about over – and it was a beautiful one!

Friday, September 18, 2009

Some Good News??

I received what I consider disturbing news last week.

There is a test, CA 27-29, that is used to screen cancer levels. This test is generally used as a marker for breast cancer cells. Its effectiveness in diagnosing breast cancer is highly questioned, however, it is used frequently for patients undergoing treatment to see how they are responding to that treatment.

My oncologist told me that my markers went from around 400 in June (or thereabouts) to in the 90's. I sat on this information for a week, sharing it with only a few folks because I really don't know what to make of it. I asked my nurse yesterday to review the screens that I have received since coming to the center. She graphed the results for me, and you do see an amazing downward trend.

I realize this is probably good news – It means I am responding to treatment; however, I also still feel this discomfort in my side, which really doesn't seem to lessen. Also, I know in another three weeks or so I will have to have a series of MRIs and CT scans to get a better look at what's really going on. Although I don't dwell on it, I am afraid of these tests – not just because they have to stick me, but because of the results.

I really can't explain my apprehension. I am hopeful, but afraid of hearing bad news. Perhaps its a lack of understanding about how the test results relate to remission, if they do at all. This all hasn't dampened my spirit – it just brings my fear a little closer to the surface.

Thanks for listening.

The sun finally showed itself today – and it was a pretty good day!

Thursday, September 17, 2009

A Mixed Bag

Unbeknownst to me, Thierry took this great shot. I had to laugh when I saw it and thought why not share this. I guess one of the best forms of humor is to be able to laugh at yourself, and I love sharing a good joke!

In my search to find humor, I managed to subscribe to the joke of the day which hooks you into Comedy Central. I've yet to get a really funny joke. Maybe the humor is directed to a different age group? Oh, I hate to think that when you mature you naturally lose your sense of humor? But then I always had a different sense of humor - never did like slapstick (like the 3 Stooges or Laurel and Hardy). I hate dumb humor and bathroom humor (like Dumb and Dumber and farting).

Maybe it's not age, it's the people delivering it (the joke)? I caught Jay Leno's show the first night it was on and thought it was awful. I did miss the music awards but had heard something about Kanye somewhere, but totally did not know what Jay was talking about when he interviewed him and had to call Lauren to find out what exactly had happened. And I found little to laugh at during the painful 60 minutes. Point being, that he is more my generation – altho he is making a failed attempt at attracting younger viewers – and I didn't think he was very funny. So, I guess as many readers offered, humor is all around us – you just change the way you look at things.

Today I am receiving my 2nd dose of chemo of my 2nd 3-day cycle (is that confusing or what!). I am not sure how to count the first mega-treatment – maybe that was my 1st cycle – and actually I am on my 3rd cycle. Thing is, they can't even keep it straight here at the hospital! That is really scary. I am going to have to make sure I write each treatment down so I know what is going on.

I did get a bit of good news. I called Blue Cross and was told I can get the Neupogen, and have it delivered to our home. All I need to do is get a form filled out and fax it with with a script. In speaking to the nurse here at the hospital today, she said that the folks here should have worked all that out and should have completed the form and sent it in. I spoke to the responsible person on Monday, and she sounded like she new nothing about it. They also said they would follow up – but did not as of yet. You've got to be your own advocate!

The Neupogen must be working, my energy levels are good; some minor nausea – nothing requiring any drugs to function. Attended a lovely wedding party on Sunday at a beautiful location; celebrated Mom's 89th birthday with all the family; had dinner with my sisters; received homemade muffins and applesauce from my dear neighbors; went to a Phillies game with Lauren and Mike and saw them (the Phillies) make a grand slam, and had my dear husband by my side to share it all with! It doesn't get any better than this!

Monday, September 14, 2009

Cell Phone Etiquette

Well, I finally did it! I told someone today to take their cell phone conversation elsewhere.

I was getting my vitamin C infusion today - which now takes 3 hours because I am getting a bigger dose. Anyway, I was there about an hour when another woman and her daughter (Melissa) came in. Melissa promptly began working on her laptop and texting. I started to get drowsy so I pulled out the iPod and put on my relaxation exercise.

The infusion space is pretty wide open. Chairs are in groupings of two separated by a little table; hence there is very little privacy. Melissa and her mother were sitting across from me. Just as I was going into lala land, Melissa got on the phone. Like most people talking on their cell phone, she was talking rather loudly. Okay, I thought, this won't take long... until her phone rang and she proceeded to chat some more. At that point, I turned off the iPod and just kind of stared at her.

After a few minutes I thought I'd try meditating again and put the headphones back in. The iPod would not work!!! Now I am a bit ticked. But, I decided to get myself to relax and try meditating without the help of the iPod. Then Melissa decided to call back the first caller and discuss the quote he was asking for and to schedule an appointment for tomorrow. That was it; I asked her if she would mind making her business calls in another room. She said, oh, of course, and apologized - then muttered something about me listening to my iPod (don't know what that had to do with it?). I later mentioned to the nurse what I had done - she was sympathetic and said she had been trying to come up with a sign that would "work" with the decor of their brand new facilities.

I've heard many arguments that people like me are dinosaurs and that this is what people do today, get used to it. I don't text or read emails while I drive. I "generally" don't answer my phone when I am in a restaurant or visiting with people. I would never take a call when I am in a meeting. I am sure Thierry would say I am more cell-phone obsessed than he, and probably I talk on the phone too much. But I still believe in things such as etiquette and good manners. I also believe in privacy. I've heard lawyers discuss cases on their cell phones - and I really don't want to hear about someones social life in the elevator.

Now that I am emboldened, look out! I may be a dinosaur, but I don't have to be brought into someone else's drama - especially when dealing with my own.

Today was a beautiful day - I hope everyone on the east coast took the time to enjoy it!

Sunday, September 13, 2009

A Little Dose Will Do Ya

Thursday past was the beginning of my 2nd cycle of chemotherapy. My blood counts were up (although still lower than the normal low), but they were able to give me the full treatment. It seems as tho I will have to receive the Neupogen shots after each chemo treatment. As I may have mentioned before, these are given over three days and must be administered at least 48 hours before the next chemo treatment.

When I was visiting with the doctor, she suggested that I self-administer the shots... I immediately pointed to Thierry and said “he'll do it!” The advantage to self-administering the drug is that I won't have to go back to the oncologist office for three days following my treatment. Also, I could get the shots over the weekend, which may help my energy level. As it goes, I don't have prescription coverage which may impact my ability to obtain the drug.

The fact that I don't have prescription coverage may shock some of you, but you have to take whatever benefits you can get – especially when you have had a serious illness such as mine. Since I am able to get my benefits through a group plan (I would never be able to get coverage – or afford it - otherwise), I am only offered what they offer – which does not include prescription. If the entire group doesn't take prescription benefits, no individual can purchase their own through that provider.

The drug is covered by my health plan when I receive it in the oncologist officer. Currently, it appears the insurer will allow me to self-administer the shots – although we are waiting for confirmation about this, but this may only be allowed until January of 2010. At that time, they may no longer allow self-administration of certain drugs – Neupogen included. Mind you, they will pay for it if I go to the oncologist office, taking a scheduler's time to schedule the appointment, the hospital pharmacist's time to deliver the drug, the nurse's time to administer it and space needed for infusions and other medical necessities, but they won't allow me to buy it at an affordable cost and do this at home. By the way, the cost of one Neupogen dose (if I buy it) is a “mere” $585.00.

If anyone thinks our healthcare system is not broken, they live in a dream world. I have been trying not to talk about healthcare, given all the nonsense that is going on right now in this country. But when I see the 10,000 protesters in Washington, I can't help but see a bunch of government employees (covered by a government-run health plan), retirees (covered under medicare – a government-run health plan), union workers (covered under a quasi-government-run health plan), and corporate people who are covered by their employers; all of whom pay little or nothing for their benefits – AND get to retire with medical benefits.

Again, I hate to grandstand, but if I lose my benefits, there will be no recourse for me. As it is, I have to worry about what medicines I will need that I may not be able to afford. I am sure there may be those who will shrug and say, oh well, that's the way the cards are dealt – I guess they are the people who have never had a close family member who has had it happen to them.

The sun is shining, finally – I've been feeling pretty good this go-round – and today is a very good day.

Wednesday, September 9, 2009

Something to Laugh About

It's amazing how quickly one's mood can go from happy and lighthearted to grumpy and agitated. I woke this morning feeling down and trapped. I assume it is the thought of 3 hours of Vitamin C this morning and 8 hours tomorrow at the oncologist that has something to do with it. However, I also noticed that I feel somewhat stuck. It's hard to make plans to go anywhere, and I find it depressing just staying in the condo. As much as I love it, the walls are beginning to close in.

Lauren and I did make plans to go away Columbus weekend. We're going to Denver with my friend Barbara from SF and Ann from PA. Thierry and I will most certainly take Curlew out again, and at some point, will get up to NYC. Its just that in the back of my mind is always a question of how I'll be feeling. I guess this is what you have to learn to live with when you depend on chemo for your survival.

I was flipping through a book that a friend gave me by Robert Schimmel, a story of how humor got him through his non-hodgkins lymphoma treatments. I generally avoid books about cancer and cancer survivors – they tend to depress me. I did read Lance Armstrong's book, “It's not about the Bike”, which I did enjoy, but for the most part, I really don't want to know what others have gone through, who lived and who didn't, etc. I felt very bad and unappreciative when my friend gave me a book of stories by various cancer sufferers/survivors. Intuitively she asked me if it would be something I would enjoy. Since she asked I was able to express my feelings to her.

At any rate, I read his list of lessons learned. One of the items on his list was to have a sense of humor, no matter what. I think about this often, especially when I am curled up on the sofa with my face smushed in the pillow feeling like a zombie. My sister told me that when she was going through her treatments years ago, she tried to maintain a sense of humor and looked up the joke of the day – I think on the Internet.

I used to think I had a sense of humor – but somewhere along the way lost it? Maybe I just imagined I had one, because I remember a dream from years ago – during a stressful time, when my neighbor/friend/former boss Edith LaRosa, long ago deceased, talked to me in a dream. I remember the dream vividly and won't go into the details, but she told me to stop taking everything so seriously. She said I was always too serious. I was one of those people who thought about everything to the point of overkill, often taking people's remarks personally. During my working days I would dwell on my mistakes and spend countless hours rehashing conversations and wondering if I said the right thing.

My gmail address is iwanaberma, for Erma Bombeck. Remember her? She used to write a column in the Philadelphia Inquirer (possibly nationally published). She passed away many years ago. I always wanted to be able to look at life as she did, noticing the ironies in things people said, in words, in everyday life, and writing about them in a way that always brought a smile or a chuckle.

So, how does one go about acquiring a sense of humor? Do you subscribe to joke of the day? Watch the Comedy Channel? Does it require that you listen more, question more, observe more – and think a lot less? How do you (my reader) maintain a sense of humor?

Today I will try to find things to laugh about – and turn this day into a good one.

Monday, September 7, 2009

A Not Very Laborious Labor Day

We are in our fourth and final anchorage before we return to Baltimore tomorrow. We have been extremely fortunate to have had three beautiful sailing days, and five days of great weather, relaxation, good food, good friends and much laughter.

When we left Baltimore we sailed to the eastern shore of the Chesapeake to Swan Creek, near Rock Hall. On Friday we had a nice sail up the Chester River, to the Corsica River, to anchor in a relatively quiet anchorage. We rafted up with our friends Lisa and Kirk. Thierry had brought along the sailing dinghy, and it didn't take him long to get her into the water and take her for a sail. On Saturday we left the anchorage and motored down the Chester to an anchorage near Queenstown. I understand there really isn't much of a town in Queenstown, but there is a nice anchorage. There we met up with two other couples and we all rafted together. It was great fun – to see folks we haven't seen in a while and to just talk and laugh. We celebrated Kirk's birthday with a wonderful carrot cake made by Lisa.

One of our party left on Sunday and three of us remained. Kirk donned a wet suit and tank and went into the water and checked the bottom of all of our boats – cleaning off barnacles that had attached themselves to our prop. Thierry noticed a big difference today when we left the Chester River to head back to the eastern shore. By evening, our somewhat quiet anchorage became quite crowded with both sailors and power-boaters. I think we made enough noise to drown out whatever sounds were coming from the others around us.

We are currently at an anchorage about two hours from Baltimore (our home port), after a great sail across the Bay – we were sailing at a speed over 7 knots. On our trip down the Chester River and out to the Bay we joined what looked like hundreds of sailboats on their way to (I assume) their respective home ports. It was quite a site.

We picked up some crabs from a couple of fellows selling steamed crabs from their skiff last night. We'll eat them tonight along with left over pasta. Although it is cloudy outside and there is a threat of rain, it is still comfortable and we are savoring our last evening aboard.

Since we've come south, I finished one book, read two (albeit somewhat short) and am almost finished a third. The one I finished, “Casa Rossa” by Francesca Marciano was a story about three generations of women who spent a portion of their life at a farmhouse (Casa Rossa) in Puglia, and the events (men) that shaped their lives. I really enjoyed this book. There are frequent references to food, with many of the key ingredients (not recipes per se) in Italian. So, I'll have to take the book home and ask Dad what they are talking about. The book makes me want to go to Italy – and to try some new pasta dishes! Because of the book I bought a magazine, Cucina Italiana, that I have never seen before hoping to get inspired... it was only okay.

Lisa loaned me a book, “The Madonnas of Leningrad”, which was wonderful. This book took you from past to present, in the memories of a woman who suffers from Alzheimer's. Her past memories take her back to Leningrad in the winter of 1941, when the city was under siege by the Germans. Some 2000 people lived in the basement of the Hermitage during that winter, where our main character resided. She had worked as a docent in the museum before the war, and during her stay, she memorized the original placement of the artwork that was removed to protect it from damage or theft.

I also read Iain Pears' “The Bernini Bust,” a detective story that brings an art dealer to Los Angeles where two murders occur relating to some stolen artwork from Italy, which required the assistance of a female detective from Rome who solves the case along with her art dealer boyfriend. An okay, easy read. I am now almost finished reading “Bel Canto” by Ann Patchett. I believe this was one of the books selected by our reading group when we were away. This is about a group of people, including a famous opera singer, who are held captive by a group of South American militants. I a,m enjoying the book so far, being about 2/3 the way through.
So, as you can tell, we've been getting lots of R&R. Water, sun, friends, wind, music, laughter, a good book, and an amazing Skipper; what more could one ask for! It's been a great couple of days!

Wednesday, September 2, 2009

Back on Board

We did it! Arrived in Baltimore around 12:30, just the right time to go to Mama's on the Half Shell for lunch. Curlew looks beautiful, albeit a bit dirty on the outside from the weather and sitting in the slip. Thierry has a spring in his step that I haven't seen in a while. Even the moon will be full for us when we take Curlew out for a few days on the Bay. We picked up wine and beer, will get food on board tomorrow (you see we have our priorities straight), and hope to head out by noon. We'll join friends in Swan Creek (Rock Hall area) that evening then see where the wind takes us. During the weekend, we hope to raft up with two other boats - it should be a fun time.

This morning I went for another Neupogen shot (to build the white blood cells). It was a good thing I telephoned the oncologist office yesterday to ask if a) they got the results of my blood work and b) if I needed to come in. When I later spoke with the PA she did confirm that running a fever is a side effect of the drug. So, I have been popping Tylenol all day - so far (at 9:55 p.m.) I am still feeling pretty good, and report a normal temperature. I also learned that three shots of Neupogen is a standard regimen.

My wonderful neighbors, Barbara and Doris, both brought over care packages on Monday. Barbara makes the most incredible chicken soup which will feed us for a couple of days. Doris made egg parm (one of my favorites) and included some fresh veggies. All this after my sister and our friend Joan brought dinner (and my parents) over on Sunday. The Sunday dinner at mom's came to our house. Lauren and Mike pitched in - it was great to have everyone around.

Well, Thierry is hoping that the boat isn't too fouled with barnacles and the prop isn't too clogged up so we can get the boat out of the slip tomorrow. I'm off to get a good night's rest and am looking forward to a great couple of days. I hope you all enjoy as well.

Tuesday, September 1, 2009

The Summer Palace

Quickly I will write about the Summer Palace, the name of the picture attached (see the Mary Bird posting below). A real update should follow tomorrow night from Baltimore! :)

We received a package from the Morris Arboretum today. The cover featured a full picture of the Summer Palace and provided the following information about the structure and its creator.

The sculpture was designed and built by Patrick Doughtery and features an onion dome associated with Russian and Byzantine artchitecture. It was named The Summer Palace upon its completion because it reminded him of Dr. Zhivago.

The sculpture is over 25' high and is made of locally-gathered twigs and saplings, mostly willow, dogwood, maple and birch. His inspiration came from a snail shell he found in his yard in North Carolina. There were no nails or other supportive hardware used.

If you'd like to learn more about the Summer Palace or the Arboretum, visit www.morrisarboretum.org.