Too Much to Bear

I’ve been through a lot in the last two years….I’ve lost a lot, I’ve given up a lot. I’ve been diagnosed with cancer, epilepsy, an aneurysm and an ulcer. I’ve had to adapt my life to the changes brought on by my illness, giving up the freedom to drive, giving up wine and coffee which were previously great passions in my life (ok…well…I do occasionally have a glass of wine but I have to be very sensible about it) and giving up food and cooking as a result of my altered digestive system, reduced to small amounts of rabbit food (and occasional mussels!). The one thing that I can still enjoy (but don’t tell my neurologist) is Teavana’s Lemon Green Tea. I can’t handle heavy foods, heavy flavors…and the light, subtle flavor of Teavana’s Lemon Green Tea is settling to my stomach and I drink it all day, every day.

I was running low on my tea today so I asked Larry to haul me down to the mall so that I could purchase this month’s supply. I walked into Teavana, past the sales associates and their free samples…”No, no…I know just what I want. Please refill my tin with Lemon Green Tea.”

“Oh! I’m sorry! They’ve discontinued the Lemon Green Tea.”

…………………………………………….”What?”

“I’m sorry. We won’t be carrying it anymore.”

…………………………………………….”That can’t be!”

After creating a delightful and memorable scene (which I hope that the sales associates will reenact for their manager….and their district manager…and so on…and so on)….I left the store deeply dejected, bearing a tin of Sencha….a nice green tea….but just not the same.

I did go online when I got home and I was able to get some Lemon Green Tea from their web site but I fear that this may not be an option in the future. Whatever will I do???? It really is too much to bear….

After the Cyclone….

“Midway along the journey of our life I awoke to find myself in a dark wood.”

In 2007, at 45 years of age, I awoke to find myself in a dark wood, diagnosed with non-Hodgkins Lymphoma. I had always been healthy and I had lived a healthy lifestyle so this news came as quite a shock. Messages of concern and support poured in so I started this blog, beginning with this quote from Dante, to let friends and family know how I was doing.

As I processed this news and thought about the road and the journey ahead, I thought about one of my earliest childhood fears….the scene in “The Wizard of Oz” where the apple trees throw their apples at Dorothy. When I was little, I would run and hide behind the curtains during this scene. We had apple trees at our house and they never, ever, threw their apples at me. Apple trees were a good thing and it frightened me to see them behave like this. In the same way, I was shocked that my body would do this to me….I had taken good care of myself. Why was this happening?

I’ve used the Wizard of Oz theme as an analogy for my journey with cancer. Like Dorothy, I entered the woods with good friends and a very special dog at my side and I faced many challenges along the way but I remained strong, I continued on, ever focused on the poppies that I knew I would find on the other side of the woods. Two years later, there is no evidence of disease, the cancer is gone. Other storms have come my way: chemo-induced menopause, epilepsy, an ulcer, an aneurysm, bankruptcy and the toll that all of this has taken on my family. I’ve faced each storm with growing strength as cancer has shown me just how strong I am. There are still many challenges ahead but I have no doubt in my ability to take them on.

Several people have asked recently why I haven’t been blogging as often as I used to. The reason, I suppose, is that these days, one day is so much like the next. As I was battling cancer, I had new things to share but now I’m simply going through the slow process of healing. Due to my seizures, I can’t drive until March so I spend all of my time at home. I can’t eat much and I’m not supposed to drink anything but water so I don’t enjoy food and wine and coffee like I used to. The list of “can’ts” in my life often seems longer than the list of “can’s” but I don’t want to dwell on the negative…I want to continue to focus on the poppies, on the land that I dream of over the rainbow.

This blog has been about my journey with non-Hodgkins Lymphoma and today, on my second “Cancerversary”, I want to put that chapter of my life behind me. I will always be a cancer survivor and I will always be eager to share my experience with those who face a similar journey but it’s time to move on. I don’t want this experience to define my life. As I’ve thought about this final blog post over the last few days, I’ve asked myself “where is Dorothy now?” Am I waking in my bed, as I do from a seizure, to see familiar faces but perhaps unable to identify them? Having survived a scary event but now looking at my life from a different perspective and with a different vision of what my life could be. Or, if I look up in the sky, will I see the words “Surrender Dorothy”, a sign that the battle is not yet over? Cancer was the first in a series of storms that have crossed my path over the last two years and I still have serious challenges before me. Both analogies are accurate and today I look back at my battle with cancer as a positive time in my life, a chance to grow and examine my life in a way that I would not have done otherwise.

It’s time to move on; time to focus on rebuilding my life and finding the path that will take me to the land that I dream of, over the rainbow. It’s there, waiting for me, and I have everything that I need to take me there. Like the scarecrow, I have discovered wisdom that comes through faith, a faith that has always been there but which I now appreciate so much more dearly. Like the tin woodsman, I’ve discovered love through good friends who have been there to support me along the way and like the cowardly lion I’ve discovered courage within myself. I’m off now, in search of rainbows……thank you for sharing this journey with me…..

Pomegranate

Wondering what to do with those pomegranates that are starting to appear in the stores? This is one of my favorite salads….crunchy, tart and very good for you…..   A pretty side dish for the holidays, too.

Bulgur, Celery and Pomegranate Salad

Faith

Rejoice always, pray without ceasing, give thanks in all circumstances; for this is the will of God in Christ Jesus for you. 1 Thess 5:16-18

I’ve rarely mentioned faith in my blog but nothing has done more to get me through the past two years than my faith. At times when I’ve felt as if I’ve had nothing left, when I wasn’t sure how I could go on, this verse would give me Peace.

I’m a terribly shy, terribly independent person…..God knows this about me. One of the many blessings that I’ve had over the past two years was the blessing of being alone when I learned that I had cancer. Now, for most people, that would probably be the worst scenario but, in my case, it couldn’t have happened more perfectly for me. I was house-sitting for David and Lesley at the time and I went to the ER for what I suspected might be a reaction to a new medication. Everything checked out fine but a CT scan showed that I had “a mass” in my stomach. The ER doctor was kind, she didn’t want to alarm me, and my first response was “REALLY?? Wow!! Can I see the pictures?” I was advised to see my doctor when I got home but as I drove back to David and Lesley’s that night, as I laid in my bed in my room….I knew what this meant. I was alone…..but I was not alone.

God and I had a good long chat that night. He reminded me of a conversation that we’d had nearly 30 years ago when I desperately wanted to know the course my life should take. His answer then was brief, as it always is…..knowing just what to say so that I can move on. The message was basically, you’re on the right path, I’m here with you….don’t worry about “now”. In the middle of your life, I’ll give you something to do and it will involve writing…..but don’t worry about that right now….just stay on this path, I’m here, you’ll be fine. Now….this, in my experience, is pretty chatty for God and he really didn’t say all of that but He’s better at getting his point across than I am. So I went on with my life and forgot about this conversation….until that night in October.

I have been blessed with joy and with Peace throughout this journey. I wasn’t scared for one moment but instead I had this odd, child-like fascination with the adventure that was before me. And I wrote about that adventure. My blog began as a way to keep family and friends up-to-date about how I was doing. I was flooded with phone calls and e-mails when news of my diagnosis first came out. The outpouring of love and support meant the world to me but it was exhausting at the same time. Blogging was the perfect way to stay connected but, at the same time, get the rest that I needed and focus on getting well. My blog grew to be a way to connect with other cancer patients around the world and through my blog I’ve had a chance to help so many others who have faced cancer, who have faced chemo, who have faced their own fears. I’ve tried to be very open and honest about my own experience and if I was constipated, if I was having hot flashes, if I was struggling in any way, I let you know. For those going through an experience like this, there is great comfort in knowing that someone else knows what you’re going through.

I prayed that night in October, two years ago. I asked that, if I must do this, that He would help me to do it well. Let me be an example for my daughters, I prayed. Marie’s best friend had lost her mother to ovarian cancer during her senior year of high school and Amanda had just begun her senior year of high school. Above all, I wanted to be strong for them, to be an example, to live my faith. I had lessons to learn from this experience and they would have lessons to learn, too. I am stronger for this and I think that they are, too.

Thanks be to God!

Thyme To Move On

Multiple BIS/BISS CH. Talbot Hill’s Thyme After Time, “Herbie”

I laid in bed last night, wide awake, as I so often do, this time with the Prayer of St. Francis and a rough draft for my final blog post playing over and over again in my head. I’ll write my final blog post on Friday, October 23rd, my second “Cancerversary”. It’s time to move on and I’ll write more about this on Friday. Today, though, I want to talk about my dogs…..

In the two years since I learned that I had cancer, I have cried just once: on the way home from the airport as the first of my dogs, “Prada” (now CH. Talbot Hill Beowulf Ciao Bella), left home, destined for co-breeder/co-owner, Terri Giannetti, in New York. Earlier that week, I had loaded 12 dogs in my Honda Element and headed to the vet for vaccinations, health certificates and microchips. Over the course of the next four days, I watched my breeding program leave, grateful to the breeders who took my dogs into their homes but so sad to see them all go.  I had been told that I had cancer and that chemo and surgery were in my future.  The best thing for me, and for my dogs, was to find them new homes.  I called Alyce on the way home from the airport. We can make each other laugh, or cry, without saying a word and I needed to let the emotion out. I LOVE what I do and saying good-bye to my dogs was harder than facing chemo….or surgery…..or an uncertain future. Thank you, Alyce, for being there for that phone call…..and for all of the phone calls since. I love you!

I don’t know how to express my gratitude to David and Lesley. They have been there for me in so many ways and I think of them as family, not just friends. They gave Herbie a show career that helped distract me from my battle with cancer and It’s been wonderful sharing Herbie with them. The photo above is my favorite photo…..Herbie’s first group win at just over one year of age, two months before my diagnosis. As his show career comes to a close and Herbie becomes my full-time lap dog/nap dog, I want to publicly thank David and Lesley for all that they’ve done for me. They have been generous mentors and the very best of friends….I love you both!

Apples in October

These same apples, pictured two weeks ago, are still hanging on the tree but they’re soaking wet today. This photo was taken on the last perfect day of summer when I discovered that the Kuranda bed in the front yard is pretty good for humans, too! It was a beautiful day with clear blue skies and temperatures in the low 70’s.

Temperatures today are not bad, somewhere in the 60’s, but it’s pouring down rain. Still…..there are things to be happy about. My CT scan earlier this week was perfect and my oncologist and I will now see each other on an annual basis. Now if I can just get on similar terms with my neurologist…..

Fall Colors

Such a pretty photo…just wanted to share….

I’m quite happy today…..in spite of it all. I think that the Lamictal is finally out of my system. I wish that I was headed to California tomorrow instead of the oncologist…..but there will be shows again in my future. I have a pretty red bitch puppy that I look forward to showing next year, her red & white mother has been a fantastic brood bitch and her red & white uncle is the light of my life. What more could I want……

Partial Gastrectomy – One Year Later

It’s been nearly one year since the partial gastrectomy to remove the tumor in my stomach. I thought that I’d share a summary of my experience over the past year for those who might be facing a similar surgery. There are many personal accounts online from those who’ve undergone gastric bypass but for those of you battling stomach cancer, here is my story…..

In October 2007 I learned that I had cancer. The diagnosis was non-Hodgkins Lymphoma, stage 2E, grade 1, presenting as a tumor the size of a lemon in the upper portion of my stomach. Aside from a couple of adjacent lymph nodes, the cancer had not spread. I had four treatments with Rituxan in December 2007 but this had only a minimal affect on my tumor. In the spring of 2008 I went through six cycles of R-CVP with similar results so surgery was planned for October 2008. On October 8, 2008 I had a partial gastrectomy with vagotomy and pyloroplasty to remove the tumor in my stomach. The removal of the tumor resulted in the loss of the upper third of my stomach along with the vagus nerve that ran through my tumor. The top of my stomach was closed and my esophagus was reattached to a new hole that had been made in my stomach. The esophagus was stapled to the stomach from the inside through a hole in the pylorus. I was hospitalized for a week following the surgery.

The biggest change following the surgery, of course, was the reduced stomach capacity. I couldn’t eat more than a handful of food at a time so it was necessary to eat many small meals throughout the day. The main thing that I wanted to know from my doctors was “Will this improve? Will I be able to eat normal meals again?” I was told that my stomach would gradually stretch and that “a year from now you’ll be able to eat more normal meals”. A year later….I weigh 115 pounds, I’m a size “0″ and my stomach capacity has grown a bit, perhaps, but I still eat very small meals throughout the day. Some days I’m able to eat a bit more than others but, in general, I feel much better if I eat no more than a cup of food at a time. I have to constantly think about what I eat and how much I eat and “The Daily Plate” on Livestrong.com has been a great tool to help me track my nutrient and calorie intake.

What I’m able to eat has also changed since my surgery. If you want to know what dumping syndrome is, just drink an “Ensure” after your surgery….you’ll find out shortly after. I eat nutrient dense, calorie dense foods in order maximize nutrition and calories. I eat whole grains (farro, bulgur, etc), sprouted grain bread (Ezekial 4:9), beans and legumes, seeds and nuts, and fresh fruits and vegetables. Fortunately, I was a pretty healthy eater prior to my surgery so this wasn’t a huge shift for me but there have been a few major changes. I’m now lactose intolerant and while I can get away with a little cheese here and there, yogurt and milk usually lead to dumping. I have a very low tolerance for sugar and simple carbs now, too, so…..no ice cream, no cookies, no pastries, no crackers, no processed foods. Half a dozen M & M’s can send me to bed for an hour with dizziness, nausea and a racing heart! I used to LOVE coffee but I only drink green tea now. I also enjoyed wine prior to my surgery but I can only have a sip or two now before I start to feel the effects. It’s best to keep solids and liquids separate to avoid dumping food into the intestines too quickly. And, of course, there can also be motility issues that cause things to move too slowly. For this I take 200 mg magnesium at night (this also helps insomnia). It sometimes seems like the list of things that I can’t have is longer than the list of things that I can but I’m getting used to it.  In general, my stomach capacity and what I can eat have improved little over the past year

When my esophagus was reattached, a stricture formed, making it difficult to swallow my food. While the problem actually occurs where my esophagus joins my stomach, I feel it as tightening sensation in my throat. In order to correct this, I’ve had my esophagus stretched several times. I also developed an ulcer in my stomach near the esophagus, likely due to a weakening of the microvasculature in the area caused by the surgery. LOL! At least, that’s how it was explained to me….I’m not a medical expert, I just live with this stuff!

The good news…..a year later and I’m cancer-free. I’m 47 years old and I’m a size “0″….and I feel pretty good about the way that I look! I miss coffee, wine, yogurt, pastries, cheese and crackers…..heavy sigh….. Now I snack on almonds, or lentils, or tabbouleh…..it’s just not the same…..

Medical Update

I saw my neurologist yesterday, the first opportunity that I’ve had to see him since my most recent seizure in September. We don’t know why I’m having seizures so we don’t know how to treat them. We simply have to try a variety of things and, if I don’t have seizures, we go with that. I’ve been on a heavy dose of Keppra since May but when I had another grand mal seizure in September it was clear that the Keppra alone was not going to work. We added Lamictal, in addition to the Keppra and yesterday my doctor asked me what I’d like to do….continue on with Keppra + Lamictal, go back to just Keppra…..or ????. I’ve chosen to take Keppra alone…..and be very careful about minimizing things that might trigger my seizures: alcohol, caffeine, lack of sleep, fluorescent light, estrogen. That isn’t easy! I love wine and I’d already limited my intake of alcohol but will now cut it out entirely. I’ve already given up coffee….another love. Instead, I drink tea and had lately been drinking more black tea which contains more caffeine than the green tea that I ordinarily drink. But….giving up tea entirely…..that will be difficult. My stomach surgery has already greatly limited what I can eat and drink.  Giving up tea would leave me with water, vegetables, whole grains, chicken and fish. Sleep. That’s been difficult for years. I will often sleep just two or three hours each night but lately my medications have made me sleepy, often needing a morning and afternoon nap but I’ve also sleeping more at night. I’ve known for years that I’m photo sensitive so I try to avoid fluorescent light and dappled or flashing lights. Hormones…..well, those are out of control as I go through menopause and my doctor says that even after I’ve made that transition, the seizures are likely to continue, perhaps even get more frequent. At the urging of friends, I’ve gotten a referral to the University of Washington Medical Center and I hope to see a neurologist there soon for a second opinion. For now, I’ll continue to take my meds and minimize seizure triggers.

I also found out about my aneurysm yesterday. At just 3.45 cm, its not a concern right now but something to keep an eye on. The CT scan has also shown that the cyst on my liver has perhaps grown slightly (just over 7 cm) but it, too, is not a concern.

Is there anything else? I think that’s it. It’s enough, isn’t it? I’m doing OK, unable to drive until March (if I can manage to not have a seizure between now and then) but I’m doing alright….and getting lots of reading done!

A View from Ireland

Had endoscopy first thing this morning. My ulcer appears to have healed. Nisse went to her new home last night so I have one less puppy, six more to find homes for. Dancing with the Stars tonight…..YeeHaw!!!! I’ll finally meet with my neurologist Wednesday afternoon.