Fighting to stay positive . . .

This past week was a difficult one. I've had a hard time keeping my spirits up. I keep trying to fight the negative thoughts and concentrate on only the good things but last week was a real challenge.

I guess the hardest thing is feeling like such a useless individual right now. I have little to give to those who are showering me with such love and concern. This extreme exhaustion is preventing me from being the active, productive person that I want to be. I don't know how much of it is due to physical causes and how much to psychological causes. All I know is that I'm tired all the time and can fall asleep anywhere at anytime. I hate it! I'm used to a busy schedule and this "couch potato" stuff is getting to me! This is not how I want to live.

This morning before I got out of bed, I decided that I'm not going to allow this disease to keep me from doing the things I want and need to do. I realize that I may have to move at a slower pace but I will accomplish things! If I don't, I may as well be dead already. I have a life to live and I'm going to live it. I know I'll have to include more rest periods but I can deal with that as long as I can feel productive again. Things are falling into a state of chaos around here and that isn't going to continue. I have work to do and I'm going to do it!

Little things are bugging me like the state of my office. It's a mess! I have piles of things all over the place ~ things that I've allowed to collect over the last three weeks. I have to get busy and take care of this stuff, do what is required and add a sense of accomplishment to my days. I think my body has given in to cancer and I won't allow that to continue.

Our laundry has grown to mountainous proportions ~ it's time to do something about that too. I know I'll feel better just knowing that I'm taking action. In the past couple of weeks, I've spent hours and hours playing computer games because they keep me from thinking about what's happening to my body. That can't be healthy. It's time to start living my life again. If I'm nothing but as lump on the couch or a body in front of the computer screen, what good am I?

I've let so many things slide and it's affecting how I feel about myself in a negative way. I realize I have to adjust my thinking about how much I can accomplish at one time, but even if it's only one or two things each day, it's better than what I'm doing now. I will not let cancer run my life. I'm taking back that control.

One of my friends sent me a candle ceremony that she says has gotten her through dark times. I'm going to share it with you in the same words it was sent to me. Maybe it will help you too.

"I believe in Candle Power - this is how it works.

Candles may be of any type or size. The main purpose of candle burning is that it enables you to concentrate on what you are doing, or what you are trying to obtain. It is symbolic. A candle is a form of burning of the old, making something go away or to have something come to you.

The smoke is symbolic of carrying the message, in the form of thoughts or words to a higher power or being, maybe your God.

One of the important things to remember in candle burning ceremonies is to do this in a quite area. A space away from noise or distraction. The time is important – I prefer at night, usually after a bath or shower, just before I go to bed. You will want to leave your candles in the same place and keep them undisturbed.

Now for the color of the candles to use. I use RED, because it symbolizes Strength, Health, Vigor, and Love. You can also use WHITE, it symbolizes Purity, Truth, Sincerity. Or you can
use a mixture of colors, depending on what you would like to attain or be relieved of.

Light Blue: Tranquility, Understanding, Patience, Health
Dark Blue: Impulsiveness, Depression, Changeability
Green: Finance, Fertility, Luck
Gold/Yellow: Attraction, Persuasion, Charm, Confidence
Brown: Hesitation, Uncertainty, Neutrality
Pink: Honor, Love, Morality
Black: (do not use)
Purple: Tension, Ambition, Business Progress, Power
Silver/Gray: Cancellation, Neutrality, Stalemate
Orange: Encouragement, Adaptability, Stimulation, Attraction
Greenish Yellow: Sickness, Cowardice, Anger, Jealousy, Discord

If you are trying to overcome Illness you might want to use a “Light Blue” candle. If you are trying to overcome Financial problems use a “Green” candle in the mix as well.

I believe that we must give of ourselves to a higher power. For only a higher power can truly help us in this physical life.

I have a desk in my bedroom and I have 5 candles on a tray (mine is round – yours can be anything, or any shape. I use each candle for a specific purpose:

1. “Health”
2. To take away “Fear”
3. To take away “Self Doubt”
4. “Truth” – “Light”
5. “Power”

You can use your own affirmations. You can say whatever you want. It does not have to be the same dialog all the time. You can change it as your life starts to change. For example, when the “Fear” left me, I then used this candle to thank God for releasing me from the fear that was paralyzing me and keeping me from moving forward. All of my Stomach problems were connected to FEAR – since I have released the “Fear” from my body, I no longer suffer from Acid Reflux, Heartburn, Indigestion, etc. I think since mid January (2004) I have taken only 2 Zantac’s because I thought I was going to get heartburn (my usual was 2 a day). I have eaten Pizza, Spaghetti, Hot Dogs, and several things that I have not been able to eat for a very long time. I had Acid Reflux so bad that I would have to sleep straight up in a chair all night and the pain was so intense that I was not sure that I was not having a heart attack. I would get heartburn from a glass of ice water. But, since the fear has been taken away from me so have all of my stomach problems. My fear was of the unknown, fear that I could not handle what was coming, fear that it was going to turn out bad, fear that I was not good enough, fear that I was not capable of doing…….fear, fear, fear.

Remember that:…. The mental thought patterns that cause the most disease in the body are CRITICISM, ANGER, RESENTMENT and GUILT. For instance, criticism indulged in long enough will often lead to diseases such as arthritis. Anger turns into things that boil and burn and infect the body. Resentment long held festers and eats away at the self and ultimately can lead to tumors and cancer. Guilt always seeks punishment and leads to pain.

HEALTH: I use this candle to cleanse my body of all illness. Take away pain, take away symptoms, etc. I asked God to cleanse my body, mind and soul of all ill thoughts and illness. To heal _ _ _ whatever your health issue is. I had other things, physical things happen after my stomach problems cleared up, and I ask for help in curing that also and it worked.

FEAR: We have already discussed this one. However, I would like to share that after a week I felt like a great weight was lifted from my shoulders. I was happier and felt more at peace than I have in a long time. I knew that I was not going to fear anything – that I would be able to face what was to come without fear.

SELF DOUBT: I think this goes hand and hand with fear. I was so paralyzed by the fear of the unknown and so much Self Doubt that I could not think clearly or move forward. I needed to believe in myself again. I needed to feel self-assured again, confidence, empowerment, etc.

TRUTH / LIGHT: This was so amazing to me. A situation came up that I had questioned, I did not know what I was supposed to do – I was not sure that what I was facing was the truth or if I was being conned. I asked for Truth and to Light the way for me to know the truth, to take all obstacles away. Within 3 days, the truth was made known in a very distinctive way – there was no mistake about the truth of the situation. I also use this candle to show me that there is Light at the end of the tunnel and to lead me in the right direction.

POWER/STRENGTH: This is to give me the power to do the right thing, move forward without fear. Take away my procrastination (which I have been so good at lately) and help me move forward. Give me strength of Body and Mind.

As I light each candle I re-affirm what the candle represents. I say two prayers ( this is for each person to determine what they would like to do here) or just clear your mind of all thoughts from the day. That’s why after a shower and before bed is a good time for this. I sit silently and concentrate on what I want to obtain from this. Sometimes I will hold my hands over and near the flames – just close enough to feel the heat. It gives me a warm feeling inside as well. After all the candles are lit, I focus on each one and say my “affirmation” for that candle. “Please give me the strength and power to do what I need to do……..”

After I have affirmed each candle and it’s purpose I blow out the flame (one at a time) and mentally picture the smoke, from the flame, taking away the illness, fear, self doubt, etc., from each candle. When all the flames are extinguished I say a closing prayer and repeat the process the next night. If you miss a night – that’s okay. But I have come to look forward to this time of meditation and understanding.

Once you rid yourself of a particular feeling, such as fear, use that candle to thank your Higher Power for releasing you from this burden. As each illness is cured or gone – take the time to thank God for healing you.

Good luck – I hope this works as well for you as it has for me. I hope it will continue to work for me and bring me to a happier place in my life. "

I know from my own experiences that affirmation, visualization and meditation can work wonders. This candle ceremony combines them all and I'm hopeful that it will be as powerful for you and me as it is for my friend.

Until next time . . . Believe in the power of your own mind.

Just when you think . . .

I'm finding out just how quickly things can change with this disease. On Tuesday, my doctor called to tell me that, according to the last CT scan, the cancer has spread in my right lung. Instead of being confined to the lower lobe it is now visible in both the middle and upper lobes. Since the CT scan was taken only 2 weeks after the PET scan which didn't indicate this spread, I was totally stunned and felt like I'd been kicked in the stomach. So, now instead of being in Stage 3B, I find myself in Stage 4.

The bad news didn't end there. There is a spot on my liver that my oncologist is also concerned about. This spot was evident in my first chest CT but then didn't react to the PET scan and didn't show in the abdominal CT. However, it has raised it's ugly head again and now I have to have another needle biopsy. : ( That has been scheduled for October 31st.

I took this latest news very hard. I couldn't stop the tears from flowing and as Dave wiped them from my cheek's, he said I was making that job endless. His comment did make me laugh a little. Thank God I have so many loving people to support me. I'd be lost without them.

On Thursday, the 26th, I saw my oncologist and she told me that because there is now such a large area of the lung involved, the radiation oncologist doesn't want me to have radiation ~ at least not now. He said that, because the affected area is so large now, there would be a lot of scarring of the lung tissue and I would end up requiring oxygen to breathe. So, the only treatment I will be receiving is chemo. I'll be getting Carboplatin and Docetaxel every 21 days, beginning on November 9th.

I asked Dr. Mehrotra if this meant she was treating my disease less aggressively and she said "certainly not". The reason I will be having fewer treatments, further apart is that the dosage will now be much stronger since I won't be receiving radiation at the same time. She was still very positive but not quite as positive as the last time we met.

I still have the bone scan on Nov. 3rd and she didn't have the results of my brain MRI. I'm praying that there are no cancer cells evident in either of those.

I guess you could say this has been a bad week for me and I'm glad to see it end. Just when I thought my treatment plan was all in order . . . Whammo! But, I suppose that's the nature of this insidious disease. I'm not as devastated as I was on Tuesday. I've been able to lift my spirits almost back to where they were before. I know my attitude will have a great bearing on my outcome.

Yesterday I went to see my priest. I don't feel a close relationship with God like I used to and I wanted to discuss this with Father Anthony. He told me that all Christians go through "dry spells" when God seems very far away and gave me a few ideas of how to bring Him closer again. He also anointed me. That sacrament made me feel much better. This is no time for me to be unable to "feel" God's presence in my life. I'm glad I sought out advice and I'm sure that Father Anthony's suggestions will help me reestablish my relationship with God. Dave and I have decided to start going to mass again and I know that will make a big difference.

Another thing that's helped my spirits is the sunshine we've had for a couple days after a long period of gray skies and rain. Gloomy days didn't use to bother me ~ I thought they were kind of cozy but that seems to have changed since my diagnosis. Now, I would much prefer to see the sun shining.

The thing that bothers me the most is my total lack of energy and extreme tiredness. There are so many things I would like to do and I can't because my body just won't cooperate. I miss walking with my Labs, Chessie and Casey. I know they miss it too. I'm hoping one of these days I'll feel strong enough to get out their leashes and take a nice hike. It would feel so good to feel the breeze against my face ~ I know it would make me feel more normal and alive. Lately, all we've done is go from appointment to appointment and that saps all of my energy. I suppose it will get worse before it gets better but I'm really looking forward to the day when I can do the things I used to without being exhausted.

My mother and my daughter, Jenn, have taken good care of me this week ~ bringing over food and washing my lace curtains. Those curtains were really driving me nuts because it was depressing to look at them in their grimy state! Now they are all fresh and clean and it's a wonderful difference.

Dave, my mom and Jenn all make me feel very loved. I've also spoken with my son, John, and his wife a few times this week and that helps a lot too. Of course, my sister and I talk frequently and I always look forward to those conversations. I feel really blessed to have so many people who care about me. They make it so much easier for me to handle the fact that I have cancer. I know there are those who don't have anyone and I don't know how they manage. My heart goes out to them.

I'm really trying not to let the fact that I have cancer consume my every moment and every thought. There are too many wondrous things to enjoy and I want to be able to do that. Sometimes though, it does overcome me and I wonder how long I'll live and what quality of life I'll have. Sometimes I'm afraid but most of time I'm not. I'm really trying to take it a day at a time and not project into the future or worry about what that may hold. Today is the most important day and if I can enjoy it, then I feel I've won a big battle.

I'd really love it if any of you who are also fighting cancer, would tell me how you make the best of it. I'm sure it would be helpful.

Until next time . . . think happy thoughts!

My biggest concern . . . My family.

Yesterday, I concentrated on the more technical issues surrounding my diagnosis. Today, I want to talk more about feelings. Of course, you know they often change from moment to moment. ; ) But there are some that remain pretty constant.

One of those is my concern about my family and what will happen to each of them if I die.

Dave, my husband has been through this battle once already. His first wife died very young of leukemia. I don't think it's fair he has to travel this road again. He is very active in AA and has a lot of support from his friends there. But I worry about him being alone, with only our two Labrador retrievers for company. They're wonderful companions but you can't exactly carry on a conversation with them. : ) He's being very strong for me right now but I worry about that strength continuing if I die. I don't want him to be lonely or feel alone. It hurts me to think of that happening.

My daughter, Jenn, and I have a very special mother-daughter relationship in which we each consider the other our best friend. Jenn is a single mother of three and I've always been there to support her when things got rough. I worry how she would cope without me. Her father and only brother live in California so they can't be here for her in the same way I am. She has many friends, but again, none of them live in this area. I know she has inner strengths and maybe they would grow stronger if she no longer had me to depend upon. I hope with all my heart that's the case.

I also share a wonderful relationship with my son, John. He and I are very close and I know he would be as devastated as Jenn if I don't make it. But his wife, Felicia, and his father are there to support him. I know he'd hate it if his little 3 year-old daughter, Jordan, doesn't have a chance to know me and share her life with me. I worry about the depressions that John suffers now and then ~ I don't like being the cause of it right now. He's strong and he would recover but I know that, like Dave and Jenn, there would be a big void in his life. He and his family are coming to visit next month and I'm really looking forward to that. It will be wonderful to have my whole family together.

As I mentioned yesterday, my mother is 81 years old and in ill health herself. I'm usually the one she turns to if she needs help. I know how horrible it is for a parent to lose a child . . . Even if that child is 62! She and I haven't always seen eye-to-eye on things and there have been some very volatile moments. That doesn't mean we don't love one another but we sure have had our arguments over the years. I'm happy that we're now able to show the love we feel instead of the anger we've often demonstrated. I just worry that my death would cause her to decline rapidly.

Finally, there is my sister, Sherry. We've shared so much over the years even though we haven't always lived close to one another. Right now we are separated by over 250 miles. She's a fourth grade teacher and isn't able to come up here frequently. I know that bothers her a lot now that I'm sick. She wants to be able to go to treatments with me, etc. What she doesn't understand is that she's there in my heart anyway. I can feel her support and that's the important thing. She's very emotional like I am and is taking my diagnosis very hard. She and her husband and two children are very close and I know that even though she would be very sad, she would be okay if something happened to me.

When I cry, it's this I cry about. I don't think I'm afraid to die but I hate the idea of all my loved ones being left behind. I think it's easier to die than to be left. Other than the fear of chemo, this is the thing that bothers me most. This is the worry that springs up most frequently. I don't want these people to suffer because of me. I want them to have happy lives and, of course, I'd like to continue to be part of their lives. But, if I can't be, I want them all to have the support each needs to live without me. I don't mean this in an arrogant way but I know that I'm a very big part of all of their lives and it makes me so sad to think of them grieving my loss.

I hope they all know how much I love each of them and how precious they are to me ~ I hope I've made that clear over the years. I understand how much they love me and that's what hurts so much when I think about dying. I just don't want to leave them behind.

Well, now that I've worked myself into an emotional state and tears are blurring my vision, I think I'd better close this. Maybe giving into a good cry would be therapeutic. ; )

Until next time . . . Keep fighting the fight, no matter what your opponent may be.

How it all started . . .

On September 19th I got a call from Connie, my Family Nurse Practitioner. She asked me to come in to discuss the resuls of the x-rays I'd had the previous day. She said there were some things we needed to discuss. It was as if tiny pinpricks of electricity filled my entire body. I knew it was bad or Connie would never have called. To every question I asked, she answered that we needed to go over some things. She wouldn't give me any more information than that. Her responses only convinced me that, whatever the problem, it was extremely serious. Since I'd had x-rays of my chest (because I'd been exhausted for months) and mandible (due to pain that was suspected to be TMJ), I knew it was quite likely that my lungs were the issue.

We set an appointment time for a couple of hours later and during that 120 minutes, I felt doomed. My hands were shaking and I was trembling inside. For some reason I wanted to go for this visit alone. When I was waiting in the examining room and Connie walked in, I knew from the expression on her face that she wasn't looking forward to this discussion any more than I was.

What she told me was that I had four masses in the lower lobe of my right lung that looked very suspicious. It's funny because I didn't react to that news as drastically as I had to her earlier phone call. I suppose I already knew what she was going to tell me. I was a bit overwhelmed that there were multiple masses and it took me awhile to digest that.

That was the beginning.

Connie quickly scheduled a CT scan of the lung (which showed more masses than the x-ray had) and an appointment with a pulmonologist. The pulmonologist viewed my x-rays and CT scan and said it was probably cancer but that he wanted me to have further testing done to be sure. Then I had a PET scan where cancer cells appear much brighter than all other cells. He also ordered a CT scan of the abdomen and pelvis to make sure there was no cancer in those areas, a pulmonary function test and, finally, a needle biopsy of one of the masses in my lung. This was on September 29th.

I had all of that done and never heard from the pulmonologist about any of the results. I had to wait until October 12th for a follow-up appointment with him. While I waited, I went from feeling optimistic that it might be an inflammatory disease to the black certainty that I had lung cancer. The waiting seemed endless. It's very hard to deal with an unknown.

I believe that doctors do a disservice to their patients when they don't relate the findings of tests as they receive them. It's easier to cope with the facts than it is to suffer through the state of limbo created by not knowing. I tried to fill my days with activities and thoughts that didn't revolve around the threat of cancer but it was always there in the back of my mind. Sleeping was difficult even though I was totally exhausted.

On the 29th, the pulmonologist finally told my husband, Dave, my sister, Sherry, and I that the diagnosis was adenocarcinoma of the lung. While I certainly wasn't happy with that diagnosis, for some reason I remained calm, probably calmer than I'd been when we arrived for the appointment. At least then I knew what I was facing. The doctor went on to say that he recommended radiation and chemo to attempt to shrink the tumors and then surgery to remove the lung. When I asked him what the survival rate was, he said 15-20% two-year survival. That wasn't exactly encouraging news.

Then I had to do the hardest thing ~ relate this information to my 81 year-old mother, my daughter, Jenn, and my son, John. All along, I've been much more worried about my family than I have about myself. My feeling is that it's easier to die than to be left behind. My mother and Jenn live very near Dave and me ~ well within walking distance; however, John lives in California so my bad news had to be given to him over the phone. They reacted as you would expect, emotionally but still with hope that it could turn out okay. I was calm and optimistic and I think that made it a little bit easier for them.

Since that day, I've met with the radiation oncologist, Dr. Shah, who doesn't feel that surgery is an option and reduced the odds to 10-15% survival. I've also gone through the simulation for radiation therapy. Because my radiation therapist has been so wonderful about explaining everything and answering all of my questions, I don't fear the radiation treatments. I've also met my medical oncologist who agreed with Dr. Shah that surgery is probably not an option. Dr. Mehrotra explained the chemo schedule, proposed two different drug courses and asked me to choose which one I wanted. One is 2-3% more effective but includes the side effects of possible allergic reaction, kidney damage that is not reversible, and some degree of hearing loss. My family and I are still debating which to choose. She also ordered an MRI of the brain and a bone scan to make sure there has been no metastasis, along with some kidney tests. Finally, she ordered the insertion of a med port so that I don't have to be poked each time I have a chemo treatment, and a mediastinoscopy where they make an incision just above your collarbone and insert a special tube into the mediastinum so the surgeon can see the lymph nodes near the heart and biopsy them.

Next, I saw Dr. Holmes, a thoracic surgeon. He concurred with my oncologists that surgery is not an option ~ at least not at this point. He's scheduling the placement of the med port and the mediastinoscopy. I'm a little fearful of the second procedure since it will take place so close to the aorta but everyone assures me Dr. Holmes is an excellent surgeon. Thank goodness I'll get a general anesthesia so I won't know what's going on!

I had the MRI yesterday morning and it wasn't nearly as scary as I thought it would be. I took a .5 mg tablet of Xanax beforehand as the oncology nurse suggested but I really feel that I would have been fine without it. The MRI tube was not as frightening as I thought and didn't make me feel claustrophobic. I did, however, learn that if you take Xanax at 6:45 in the morning without having enough sleep, you can expect to walk like a drunken sailor and have your mind turn to mush! : )

I feel confident with the facility where I've chosen to receive treatment and I love my two oncologists, Dr. Shah and Dr. Mehrotra. Even though my disease is in Stage 3, they have both assured me that they're going to treat it aggressively and go for the cure. They are both kind and compassionate but still straightforward, which I want. Dr. Mehrotra showed me the chemo room where I'll receive treatment ~ it's bright and cozy with nice reclining chairs for comfort.

I admit I'm afraid of chemo because it's still an unknown to me but I think that fear will pass once I start treatment. I know I'm going to go through a lot of unpleasant symptoms from the treatment but Dr. Mehrotra assures me that they can control most of them and that I won't have to suffer like patients did not that long ago. She told me that when my hair finally grows back in after the chemo, it will be gray. Now, what kind of news is that to give a woman? I was kind of hoping for a nice ash blond! ; )

I believe that once you learn your diagnosis, what's recommended to treat it, choose your facility, treatment and doctors, everything becomes easier. It's the waiting and wondering ~ the uncertainty ~ that threatens to unhinge you. First it's the trauma of waiting to hear the diagnosis, then it's the confusion of choosing where you want to be treated . . . Once those are behind, you can finally become settled and start to feel that you have some control over what's happening. You also have the comfort of knowing there's a team of experts working with and for you.

There's no doubt that lung cancer is scary but you have to remember that, no matter how bad the odds may seem, you can be among that percentage of patients who win! Don't let your mind tell you anything else. I firmly believe that a positive attitude, laughter and humor, along with the determination to keep fighting, makes a huge difference in your outcome.

Not all of my posts will be this long. There may be days when I don't feel well enough to post at all, but I'll be here with you as often as I can be. I hope those of you who are also suffering from lung cancer will visit frequently and that we can share our experiences, pick each other up when one of us is having a bad day, pass along the funny things that happen, and just generally support one another.

Until the next time . . . Remember to think positive thoughts and KNOW you can beat it!