Thursday, February 23, 2012

Feb 2011 to Feb 2012.

Someone else wrote it first, but I want to say "It was the best of times, it was the worst of times."

It has been one year since I last wrote a post for this blog, one swift, short, long, year.

I have survived.

Next month I will be 65 years old. "62 Years on the Road" may well become "65 Years on the River", because that is where I will be spending much of my time from now on, on the St Lawrence River in upstate New York!

First, let me tell you about the past year. This is the first time since Febuary 8, 2011 that I have been inclined to blog. I have been busy and when not busy, tired.

Chemotherapy ended last May. I am doing OK. I still get once every three week intravenious infusions of Herceptin to keep the cancer cells from feeding on my hormones and I take a daily pill. My hair is growing back ever sooooooo slowllllllyyy. People tell it looks kind of cute now, but I don't believe them. But it is what it is and there is no length yet for much creativity.

In May I bought a boat. A forty foot Egg Harbor Cabin Cruiser. How's that for positive thinking? I bought the boat with Mike, my guy, my boating partner, my life partner, with whom I now live. He knows boating and he is really good at it. I have never owned a boat before, nor did much boating, but I have always loved being on or by the water. On our boat, "The Walrus", is where we will spend half the year. ("I am the Eggman, They are the Eggmen, I am the Walrus" - The Beatles)

With the help of my brother, in July we brought the boat from Maryland to the River. It cruised from the Chesapeake, north along the Atlantic, into New York Harbor, up the Hudson, across the Erie Canal, Lake Ontario, finally reaching it's summer home at a marina in Clayton, New York. It was ten adventurous days. Mike memoralized the journey with photos and captions, if anyone is interested.

We spent the rest of the summer on the river. We cruised up the Rediu Canal in Canada, visited a few Canadian ports, explored the thousand islands, and enjoyed the small town atmosphere of Clayton.

We returned home in October and have been trying to adjust to life, not quite knowing what we ought to consider normal. Mike officially retired from teaching in September although he isn't 62 yet. He spends a lot of days fixing his winter boat, moored here in Gulfport, a 36 foot motor sailer. He enjoys that. sort of thing. I moved into Mike's house and (here I stop to think for quite a while, wondering what to say next........) it is a bit of another adventure. I don't mean living with Mike, that part is easy, he is easy, I mean, it is his house, not mine, and that feels a little peculiar. Although as I just mentioned, he is easy.

Our relationship is excellent. We feel lucky lucky lucky to have found each other at this stage of our lives. I especially feel lucky to have found someone who helped me navigate the turbulent waters of last year. And I am not talking about river water. He fed me when I was too tired from Chemo to get up off the couch. He held me in his arms when I cried because my new prematurely born grandson's life was so fragile. To struggle with cancer while worried about the life of one's grandsom was not in my realm of reality, but that was what it was.

I thought those months after my divorce were the worse that life could ever hand me. As bad as that was, and it was really bad, last year's cancer and Zachary's premature birth were worse, but I think I handled it better because of the divorce. I had grown. I had gotten stronger. I learned how to get along inspite of disaster, even find a kind of peace (Between tears.)

It is hard to put the past year into a few words, these feel so inadequate, but I think I've said enough about it.

So today, here I sit, having written as much as I have the stamina to write.

I will finish by saying. Zachary is doing well and I couldn't be more grateful. I too, am doing well. Mike and I are happy. Really happy! We go sailing. We go to shows of all kinds. We take little trips and have a big one planned for May, three weeks inTuscany! Then back to the River.

As Mike says often, "it's all good."

Love and luck to everyone.


Tuesday, February 8, 2011

Another Day

Before I could even begin writing this, I had to run outside and cut some aloe and smear my chest with it because there is a little rash with a big itch there, really a minor side effect that seems to be greatly eased with aloe. The aloe also is good on the peeling skin on my knuckles? And aside from an energy challenged weekend where ten minutes off the couch required 3 hours on, I continue to do OK with Chemotherapy. Well, there is the mouth thing, kinda raw with nonfunctioning taste buds, which makes eating less than enjoyable when I really need to eat 'cause I am approaching serious under weightedness (?). But I CAN eat and that seems to be better than some poor folks on chemo. So that's about it. Not so bad all in all. Yadda Yadda Yadda

All the other stuff I wanted to really get into, meditation, spiritual growth, raw food diet are not going so well, but I haven't given up. As I have said before, time seems to go incredibly fast and before I know it the day is done. I am pretty good at taking a walk each day. That's important to me. So there is THAT.

And there is something else I am getting better at. I used to feel like I had to accomplish things each day and I felt driven to do do do, be it home fix up or volunteering to do something, or managing paperwork, or some such, but now I can let a day or two go by without doing much and without feeling bad that I didn't do much of anything productive or long lasting as opposed to just doing something fun or relaxing. This is a good thing for my mental health. It is not being lazy but rather being able to enjoy my leisure or rest periods. It is about not feeling like I have to do something productive to make the day worthwhile. It is about being able to let my body heal as well.

Something else that helps me heal are all the kind and encouraging words and cards from seriously excellent folks who have offered to help me. All I have to do is ask. Actually the offers are wonderfully helpful in themselves. Asking may be a challenge, but all the books say ask. I intend to when the time comes. This cancer is no small mountain to overcome and I will take all the help I can get. While there are certain things only I can do, surely there are other things others can do. What's appropriate to ask for help with? Weeding the yard? Cleaning the closet? Preparing raw food to eat? Finding a washer to replace the one that just broke? Sewing curtains? Hummmmm

And for those who wonder. My grandson Zachary is still in the hospital and has yet another infection which means they stop feeding him and cancel the tracheotomy which delays recovery which means the poor little guys must continue his struggle for survival even longer while mommy and daddy struggle with the sadness and pain of seeing their lovely little boy deal with a very difficult life. It's a sad sad tough hard terrible time. And there is little we can do to help except pray for him. I pray to whatever God will listen.

Pray for him.


Wednesday, January 26, 2011

Terrible and Wonderful

I am having a hard time understanding how my life can be so terrible and so wonderful at the same time. While it seems, the most awful things are grandson's struggle to breathe, his parents struggle to endure his struggle, and my body's struggle to survive cancer and chemotherapy. All just terrible.

But at the same time I feel so much love in my life that I am overwhelmed with how wonderful it is. I have the love of family and friends and one very special man that fill my soul and I can't help thinking that life is as good as it gets.

Of course, I hope for Zack's lungs to mature and allow him be home with his Mom and Dad where he belongs and I hope that after three months of treatments I will be declared cancer free and then, my friends, life will be all it should be. A miraculous miracle.

All around us there is so much to appreciate. If you are well fed, warm and dry, and have the love of at least one person, be happy and simply enjoy the moon, the trees, the sun, the bees, the people, TV, OJ, AC, hugs, flowers, soft cushions, sleep, apples, lap blankets, pets, children, rocks, rugs, books, songs, snowfalls, rain, paintings, and chocolate. (And the million things I haven't mentioned that are beautiful and comforting, interesting and entertaining.)

(You have my love)


Sunday, January 23, 2011

Without a compass

I was just thinking how my life right now is not like I thought it would be, right now. It is the middle of January and I had planned on being in Washington DC for the birth and homecoming of my grandson, helping the new mother and holding the little child on my chest while he slept, like I did with my other two grandchildren. Instead, Zack was born three months ago and will remain in the hospital for another at least, and them most likely be going home with a tracheotomy so he can breath. And I am not in DC helping anybody because I am undergoing chemotherapy treatments for cancer, a scenario which never entered my mind.

I am not living in the cute little "Tidewater" cottage I had been envisioning but rather in one of my little apartments where there is barely enough room for me let alone the company I planned to have spend time with me.

I thought I might have a "boyfriend" to have dinner with now and then, but instead I have found someone to love and have dinner with every night of the week. Sometimes this realization lieaves me awed and baffled.

I was comfortable with my financial situation (finally) but now I stare at unanticipated medical expenses to gnaw at that comfort.

Life has a way of setting an unexpected course and leading us down a path that we never imagined finding ourselves on. I know that this happens all the time, but it has always been to "other" people, someone else, while "my" life moved along in a more predictable manner. Now it is my and my loved one's turn to deal with unexpected adversity and I am caught off guard and wondering what to do while passing through.

I know it is all temporary, both the good times and the bad. But still...............

Thursday, January 20, 2011

Well, let's see. So far so good. I have had three chemotherapy treatments and no particularly difficult side effects to deal with (other than the hair loss.)

I have walked and drank carrot juice most every day, ate lots of veges, and become more patient and less worried about anything. I thank that is quite good.

Time still speeds by at an incredible pace and I don't get done half of what I want to get done, but being more patient and less worried has made it easier to accept that fact. Finding time to read and meditate is my biggest challenge. It's not going too well, but I am working at it.

My favorite thing to do is be with people and that is going quite well. My brother and cousin were here for a long weekend and it was just wonderful having them close. I am so thankful they are in my life and take the time to visit little ole me.

I don't know if my decision to change doctors was the right one, but I figure that it was for reasons that are not yet clear and may never be clear so I am OK with that.

I wish I could be in DC with my grandbaby Zack and his Mommy and Daddy. They are going through a worst time than me. Little Zack needs to grow lungs fast so please send him your best lung growing thoughts and I am sure it will help. He has recently passed his original due date, weighing in at about 4 and 1/2 pounds and although he has been in the hospital for three months now, he is not expected to be home for at least another month or more. It is those darn lungs. So again, think Zack, DC, growing lungs and putting on weight, too.

Thank-you. I love you.


Friday, January 7, 2011


Wednesday was a tough day. I went into the doctor's office first thing in the morning and got a pin prick in my finger for a cell blood count (known now as a CBC) which was low and required a shot in my arm to boost bone marrow into producing more white cells. (A $300 shot, ouch, ouch).

Just after noon, I went to see a new doctor. Second opinion. My current doctor is leaving her practice sometime very soon and I wanted to make a choice, not just be assigned to someone else. Dr. Alemar comes highly recommended. I liked him. Decided to change doctors and treatment starting next week. Blood taken from my arm for more counting. B-12 shot in other arm. Poked with four needles in one day!!!

All this was followed by much anxiety. Must tell other clinic and doctor I am not coming in for scheduled Chemotherapy next day. Must be prepared for significant additional out of pocket expenses, must wait for new treatment to begin when I am so ready to clobber the hell out of the cancer cells right now. Wondering if I am making right decisions. Must make decisions all by myself based on a whim, intuition, and my minimal knowledge.

Didn't sleep much when I know I should get eight hours. More anxiety. Trying to eat enough to put on some weight when time and energy wain. (Note: Raw vege diet is great if you want to lose weight.) Tried to meditate at night when not sleeping. Trying to not have anxiety regarding my inability to meditate. (Which means meditation is causing me anxiety.)

When hungry I fix myself a plate of raw cauliflower, snow peas, carrot and celery sticks, green olives, spinach, nits and seeds and a small piece of hormone free, free range, grain fed chicken (for protein.) Yum Yum. Not exactly comfort food. But as I said, I am anxious to clobber the hell out of the cancer cells and apparently this is on the diet to do it.

I spent my middle of the night hours reading helpful books and just sitting quietly. This morning there is less anxiety and I feel better about with my decisions.

Such is life these days.

Wednesday, January 5, 2011

Love, Time, Money, Cancer, Life

Here is what I know about cancer so far. It takes up a lot of one's time. It also takes up a lot of one's mind. Right now, in one way or another, it is my life.

There is the obvious, which is the therapy, which involves a lot of money and some of my time. But more time is taken up with doctor visits, cell blood counts and shots to allow the chemotherapy. Then there is my complementary therapy that I, myself, choose to help rid my body of those nasty cells. My personal belief is that it will help. It involves walking a couple of miles every day, preferably in the sunshine and barefoot part of the time, drinking a lot of water, eating a lot of raw vegetables which are time consuming to prepare, and time for guided imagery or meditation, or relaxation. Also needed is time to read up and learn more about all these therapies. Oh, and then there is time needed to navigate insurance issues and payment plans, foundations and other money issues. Oh and it took me three hours to find a wig to cover my balding head. And talk to people who know things. And blog. I am writing this in a hurry so I can go to sleep.....I need time for that too.

Making time is difficult. I now get why cancer patients need help. I though, at the beginning, it wouldn't be so bad, that I could still get things done, I was wrong......again. The apartment is showing signs of neglect.

I suppose there are issues for everyone undergoing Chemo (I really hate the sound of that word. They ought to just call it taking IV medication) and there were white blood cell count issues for me that have delayed my IV meds (!) and consequently slowed the whole recovery process down.

I just changed doctors. A tough decision, but made. A costly decision too, but made. I am flying by the seat of my pants, at it were, praying that the universe is guiding my decisions because I really don't have a lot of reason for some of the decisions I am making other then it feels like the right way to go. I just have to have faith that I am being guided. I have to have faith too that the doctor is doing the right thing.

My hair is falling out. I know that is really a small price to pay for recovery, but it is something strange and unexperienced to deal with. I went out and bought a red wig (my hair has been blond for the last ten years or so and brunette before that.) I thought I might as well go with something different.

Time to relax, meditate, or read isn't happening as I hoped it would. But I am still trying to work it in. I am learning and learning and learning and trying and looking to the universe for whatever will direct my journey.

And now I really need to sleep.

Love, Jan