Shifting Gears for Treatment July 18, 2012

Friends and Family,

Before chemo six weeks ago I had the usual blood and urine tests to make sure everything was good to go, but there was a snag. My kidneys started spilling protein. If they keep doing this it can cause kidney damage. I found out that this is common side effect of Avastin, and one of the reasons that people have to stop treatment. We postponed treatment for a week to give my kidneys more time to recover, and then re-tested. Everything fell into place, and I was able to have treatment.

However, this time around (four weeks later) the test results didn't go well. I had to skip the Avastin. This may or may not be the end of this treatment for me. We will re-test in four weeks and hope for the best. If I can't re-start Avastin, I will be on zero treatment until the cancer starts growing again.

The last time I wrote I was having a lot of difficulty breathing, and a CT scan had just ruled out cancer as the culprit. The doctor's theory was that the breathing problems were caused by the blood pressure medication. I stopped the medication, and within a day my breathing returned to normal. It was a great lesson in staying in the present. It's a lesson Genevieve and I are taking to heart right now.

Given how bad things looked before the last time I wrote, delaying or stopping Avastin seems doesn't seem quite as scary. Also, I keep reminding myself what the doctor told me months ago: At this point we don't know whether the Avastin is working at all, or whether the cancer has stopped growing regardless. Just because I stop Avastin doesn't mean the cancer is ready to start growing again.

I will continue to do everything that is within my control, and count on your prayers, positive energy and love to beat this thing.

Thank you for being there for me.

Love,

Dann

Breathing May 17, 2012

Friends and Family,

For the past few weeks my breathing has been noticeably more difficult. Even after taking a few steps from the bathroom to my bedroom and lying down, I'm breathing harder. I'm still doing the same exercise, but I'm pretty much at my limit every day.

I became increasingly distracted, then worried, and then preoccupied. I've felt pretty useless and distant the past few weeks. The only thing I could think of was that the cancer had started growing again, and rapidly. How else could my breathing get so much worse, so quickly? Tarceva (the genetic therapy) has been my "safety net" option, but if the cancer was growing that fast, it felt like the net had a lot of holes in it. Death started looking like it was just around the corner.

Last week I finally admitted it to myself, and then to Genevieve. She encouraged me to email my doctor. He responded in the best way possible. He had me see him again the next day. Before I got there he met with the treatment team of pulmonologists and oncologists, and got a consensus on what it could be. None of them thought that the cancer could have grown that rapidly. It felt like my lifespan just grew by a giant leap in that moment.

The two likely options didn't look good, but they did look better. One was that the Avastin caused my lungs to develop blood clots. The other was that the chemo had triggered the lungs to develop a pulmonary fibrosis - a thickening of the walls in the lungs that prevents the exchange of oxygen. We didn't get into the "what if's" until I had a new CT scan and some lung function tests and met with Dr. Lopez-Chavez again today.

The test results are in, and it's all good. The cancer hasn't grown, there are no blood clots, and it doesn't look like fibrosis. The doctor now thinks the cause is most likely to be side effects from a blood pressure medication. I'll stop the medication, and we should know in a week or so. Even if it's not the med, it's unlikely to get worse any time soon. I can live with that!

I have wasted the better part of the last few weeks with worry about things that never happened, and aren't going to happen. It has been a great lesson for me about living in the present. When I can't do that, I'll at least try to save the worry for things that I know to be true.

Love,

Dann

More Good News April 20, 2012

Friends and Family,

The latest CT scan results are in, and there has been no growth in the cancer. It’s the best news we could possibly have hoped for. In fact, I’m beginning to understand that it’s much better than we could have expected.

When I started Avastin, we asked Dr. Lopez-Chavez how long the drug usually holds the cancer at bay. He said that he has seen people remain stable for anywhere from two months to 20 months (since revised to 20 cycles, which is 14 months). That’s a lot more optimistic than adding, “but it usually only works for two months.” I got this last impression from the following abbreviated version of our last conversation:

Dr. L-C: “Still have the headaches?”
Me: “Yup.”
Dr. L-C: “How often?”
Me: “Almost all day, every day.”
Dr. L-C: “Why don’t we stop the Avastin for awhile and see if that gets rid of them?”
Me: “Nope.”
Dr. L-C: “Why not?”
Me: “Because unless the Tarceva (the next phase of treatment) is a complete cure, the Avastin is extending my life. I’ll take the headaches.”
Dr. L-C: “But the Avastin may not be doing anything.”
Me: “WHAT?????”
Dr. L-C: “The Avastin by itself usually only works for a couple of months. The cancer may have just stopped growing.”
Me: “WHAT?????”
Dr. L-C: “Sometimes it just does that.”
Me: “I’ll take the headaches rather than take my chances. I can live with headaches.”

This is how I came to believe that I may already be in the Bonus Round for Avastin. This has made me feel even more fortunate that it’s been almost five months without any growth of the cancer.

I don’t think that the cancer staying stable is by accident. I am grateful for all the good things in my life that I think are the reason for this success: Your thoughts and prayers; Genevieve (everything about her!), excellent medical care, regular exercise, a healthy diet, and a positive attitude.

Sometimes friends don’t understand why I look healthy. How can I have Stage IV lung cancer when I don’t look any different? I have almost no symptoms. Some have even questioned whether the doctors got the diagnosis wrong. There’s no doubt about the diagnosis, but it’s the prognosis I’m trying to beat.

Genevieve and I have frequent discussions about this. She believes that I can beat it if I BELIEVE that I can beat it. I believe it may be possible to beat it, but that only part of what happens is within my control. To me the more important part is that I WANT to beat it. I will absolutely do everything I can within my control to make that happen. There are a lot of choices involved, and there is a commitment. I listen to myself more than I ever did, and try to make decisions that nourish my soul. I try to let go of the things I can’t control. The “letting go” takes a lot of pressure off, and that in itself is a step towards beating cancer.

There are times when I am pretty confident that I can outrun cancer for a year, or a few years, or maybe even until I die of old age. And there are other moments when the thought of death overwhelms me, and I am filled with terror. I have found that this passes quickly if I don’t hide from it. Then I can move on to the positives.

After I went through the cancer the first time, I used to tell people, “except for the near-death part, it was an exhilarating experience.” The same is true this time around. I live much more consciously when time is a precious commodity.

I hope you don't wait for the added motivation to make every day of your life count. One way or another, tell the people that you care about that you love them. In the end, what else matters?

Consider yourself told.

Love,

Dann

CT Scan Results Feb 5, 2012

Friends and Family,

I had a CT scan of my lungs this past week. Genevieve and I had been getting increasingly tense and preoccupied for the week leading up to this scan. This was my first scan after being on only Avastin, so we didn't know if this Chemo Lite was doing anything. if it doesn't work, I lose a safety net. For as long as it works, Avastin keeps extending my life.

The results are in, and the Avastin is working. There was no growth in my lung cancer. The scans will be nine weeks apart, so every "no-growth" scan means my life is extended another 63 days. Every one of these days feels like a gift. Of course, the hope is that when I eventually start the targeted genetic therapy (Tarceva) it will eliminate the cancer completely.

People stay on this Chemo Lite for anywhere from two months to 20 months. I've been on it for nine weeks. No surprise here, but my goal is to set the record!

Thank you for your continued positive energy, prayers, and love. You are making a huge difference. It's been six months since I was diagnosed, and with the exception of minor symptoms, I feel as healthy as I did a year ago. My hair has even grown back. (Thank you, Miracle Grow!)

Just like last time, the grey hairs came back first, though for some reason more grays filled in than when I went through this five years ago. Genevieve has even trimmed my hair three times. Because the longer grays were covering the black hairs, each time my hair looked darker after it was trimmed. If this keeps working, I'm thinking of having Genevieve cut my hair indefinitely.

Love,

Dann

MRI + More January 21, 2012

Friends and Family,

Bad news on the health front. I'm turning into my grandmother.

You know how we all have that secret fear that one day we will wake up, look in the mirror, and see one of our parents looking back? I've skipped a generation.

Conversations with Gramma would go like this: "How are you, Gramma?" Gramma would then recount her last visit with her doctor, word for word, including a description of when her doctor smiled, or chuckled, or looked concerned. If there was an ongoing health issue involved, the conversation would also include relevant portions of previous conversations. I found it best to ask Gramma this question when sitting next to a table with snacks, so I could keep up my nourishment throughout the story. For a woman with health issues, my Gramma had stamina.

So now it's me doing this. Someone asks, "How are you, Dann?" At this point I have an internal debate. Do I give this person my latest health report? Or do I give some socially acceptable response such as "I'm fine"? The wheels churn as I calculate whether there is anything new to share, if what I find important will seem important to this person, whether they are really just saying "hello", etc.

The tone of conversation has changed at home as well. Here's an example: Genevieve comes home, and I say, "Hi Sweetheart. Let's go upstairs to our bedroom. I'll slip off my shirt - and you can check to see how my incision is healing."

This incision conversation went on for four months because the chemo slowed the healing from my biopsy surgery in August. Now that it's healed I can do Manly Man things at the gym again like lift weights (grrrrr), shoot hoops, and, um, do yoga. But even the Chemo Lite causes some side effects, so Genevieve and I are still having daily conversations about my health.

I get why Gramma talked about her health so much. When your life depends on it, and it's fragile, it becomes the focus of conversation. It's just that I don't want to feel like I'm 93 yet, and I want room in my marriage for broader, richer conversations.

We talk about cold symptoms (ongoing for 3+ months), escalated blood pressure, and a headache. The headache wouldn't be an issue, except that it hasn't gone away for several weeks. Since the first place that lung cancer usually spreads is to the brain, my doctor got concerned. On Tuesday he ordered an MRI to find out if I have a brain tumor.

Ron, a friend of mine, died of lung cancer last year after it spread to his brain. Once it spread he had radiation treatment, and his functioning declined rapidly. The memory of Ron brought this even closer to home. Genevieve and I were both distracted, distant and on edge. If the doctor was going to worry about a brain tumor, we were going to be worried about a brain tumor. Neither of us could sleep well from Tuesday until Friday, when my doctor called.

The MRI showed no cancer in my brain. I feel about two tons lighter. I'm now taking blood pressure medication, which should take care of the headache. And I'm well enough to share my health news with all of you by email.

Gramma would be jealous.

Love,

Dann

Maintenance Phase January 16, 2012

Friends and Family,

Just a brief update. I'm continuing with my "maintenance" phase of chemo. I consider this Chemo Lite. It prevents the cancer from growing, but the side effects are minimal.

I have Chemo Lite every three weeks, just like I did with the regular chemo. I've had three rounds of Chemo Lite now, including last Thursday. Each time, just before the nurse hooks me up to the IV, I ask to hold the chemo (Avastin) bag. In my mind (and heart!) I ask the drug to do its work by keeping the cancer at bay. I also thank it for extending my life. At that point I have a profound feeling of gratitude. It's because I fully appreciate that my life has been extended for another three weeks.

You know how people say that you should keep up your hope, because new cancer treatments are coming along all the time? I am living proof of this. Five years ago when I had lung cancer, I went through surgery to remove one lobe of my lung, and had chemo both before and after the surgery. I survived long enough for amazing new treatments to come along.

Five years ago there was no Avastin, so there was no maintenance phase. There was also no targeted genetic therapy, which I will start after the Avastin stops working. The targeted genetic therapy is my greatest hope for eliminating the cancer completely, or at least my greatest hope for extending my life by months or years. Even while it extends my life, newer treatments are being developed.

Genevieve's son Aidan is a doctor. He recently told me that if he was a newly-minted physician and was choosing a specialty, he wouldn't consider oncology. The reason: He thinks cancer would be cured before he was ready to retire.

What a beautiful thought.

Love,

Dann

Hope December 8, 2011

Friends and Family,

The news is full of positives. Last Tuesday I had a CT scan, and the results showed NO GROWTH in the cancer!

Next, Genevieve and I met with my oncologist last Thursday. He completely stunned us. He said that he is hopeful that the genetic drug Tarceva will shrink the cancer away COMPLETELY. This is because I have many tiny spots rather than large tumors, so it's easier for the drug to get at the cancer.

With so much on the line, it's hard to let go and accept that much hope. The more I allow in, the more vulnerable I am if it doesn't work out. Sounds kind of like a relationship, doesn't it? Better to have loved and lost... I guess it's time to work on this one.

I started the "maintenance" phase on Thursday, where I have an infusion of Avastin every three weeks. It's a chemo-type drug but without the wicked side effects. I'll stay on Avastin for as long as it keeps the cancer from growing - anywhere from a couple of months to a couple of years. The longer the better! This is the last step before the genetic treatment phase.

With the "real" chemo now finished, my hair is growing again. Like the first crocuses of spring pushing out from under the rocks, the little nubbins are popping up everywhere. It's proof that there's life after chemo. Except... all the hairs are grey! It happened this way five years ago, too. The grays popped up first, and the black followed. I just figured that the grays were more experienced, so they led the way. This time I'm hoping that there are enough black hairs left so that I will know when they have made their appearance.

Wishing you joy though the holidays. There is so much to be grateful for.

Love,

Dann

Last Round of Chemo November 13, 2011

Friends and Family,

Thursday was my last day of chemo, and it turned out to be a real treat. Genevieve and her twin sister Charlotte came with me for the first part of the day. Genevieve has been with me for every minute of every appointment, and Char was with me in chemo for the first time. Since I knew they had to leave to drive to a workshop at Mt. Shasta, I invited my friend Buck to sit with me for the rest of the day. This is a full day process - We start at 8:00, and finish at 4:30 - so having the support is a real gift. However, Buck went way beyond, and absolutely floored me. In support of me, he shaved his head bald!!! It is one of the few times in my life I have been left nearly speechless. We spent the rest of the day arguing about who looks better bald, and in mock indignation when people told us we looked like brothers.

I spend a lot of time wondering how well the next phases of treatment will go, and what will come next. I don't know how much time I have left to live. We all start thinking more about what our life meant, and what it still means, and what we have left to do as we get older. That process has been accelerated for me. I think about what I can do that will make the treatment more successful so that I can live longer. Then I remind myself that these positive steps will not only improve my chances of living longer, they will also make my life better. Isn't that what it's all about? Why wait until a moment like this to think about what will make your life better?

A few weeks ago Genevieve and I went out to dinner with some close friends, Chaz and Virginia. Chaz always asks the most thought provoking questions. He asked what I was learning this time that is different than what I learned when I had cancer five years ago. I told him that last time, the number one thing that I was focused on was removing the cancers from my life. This includes negative people, negative conversations with otherwise healthy people, some of the negative news, terrorism in television shows etc.

This time is different. Although there are others, I'm focusing on asking for what I want and need. Next comes the even harder part, accepting it when it is offered! Both are about love. Five years ago I wouldn't have asked my friend Buck to sit with me in chemo, and I would have missed out on something very special.

I'm also focusing on giving love to others. It has been trivialized in greeting cards and songs, but it seems more true the more time I spend thinking about it: We need love more than anything else in this world. I wouldn't be alive without love today. Would you?

On to the practical details. Here's what comes next for treatment. I'll recover from this round of chemo in three weeks, and then start a "maintenance" phase. I'll be on Avastin, which prevents blood vessels from expanding into the cancer, which keeps the cancer from growing. It won't shrink the cancer, so it just buys time. I'll be on this drug by itself for anywhere from 2 months to two years, depending on whether ongoing CT scans show any growth. Avastin is one of the three chemo meds I'm already taking, but it's the one with minimal side effects. My hair will grow back, I'll have all my energy, and I won't have nausea.

When the Avastin stops working, I'll switch to a pill called Tarceva, the genetic drug. It works for months, or years, or permanently. It will shrink the cancer, or keep it from growing, with minimal side effects.

Here's another great source of hope. Five years ago when I had cancer, there was no Avastin and there was no Tarceva. Cancer treatment is advancing at an amazing pace. While I'm buying more time, being treated with Avastin and Tarceva, new advances are on the way. I don't have to rely on the hope that new advances are coming out every few years. I'm BENEFITTING from those advances right now! What better source of hope could there be than this that more advances are on the way?

Love to you all.

Dann

CT Scan Results October 20, 2011

Friends and Family,

Genevieve and I met with my oncologist before my chemo session today and got the results of my CT scan. The cancer didn't shrink, but it also didn't grow. However, the greatest hope has always been in the upcoming gene therapy. Any shrinkage from the chemo would have been a bonus.

Based on these results, I'll have just one more round of chemo in another three weeks. After that, I'll take a med called Avastin every three weeks. It keeps the cancer from growing all by itself. That usually works for another 2 to 20 months. Side effects are next to nothing compared with the full chemo.

When the cancer starts growing again, I'll start on the gene therapy medication called Tarceva. The timing is extremely fortunate for me, since this med just came on the market two months ago. It's a pill designed to stop the cancer from growing or shrink it. Better yet, 8-10% of the time, the cancer goes away completely. My oncologist thinks my odds are better than that, because the med works best on people who are in good shape and non-smokers. I have every intention of being in the 8-10% group.

Thank you again for all your expressions of caring. They are very much appreciated.

Love,

Dann

Training October 12, 2011

Friends and Family,

First, about the hair. Gone. Pffft. It started falling out, so I asked Genevieve to shave my head completely. Since I was leaving a trail of hair that Hansel and Gretel could follow, she agreed. My apologies to the guys in the office who sit behind me, who probably wish they were wearing sunglasses to cope with the glare off my glow-in-the-dark, never-seen-daylight white head. We had some sun last weekend at Eagle Crest, so now baldness looks a little more like a fashion statement and a little less like a cancer patient. I'm a lot less self-conscious now that I'm not wearing a neon sign that says, "Ask me about cancer." I can choose who I tell! And the good part, as I told Genevieve, is that hair falling out is a sign that the chemo is doing its job.

Two friends called this weekend and said that they were concerned about "bothering" me, but decided to risk a call anyway. For me, there is nothing better than having friends reach out. All contact is welcome and appreciated! This is where the energy to fight comes from!

Both friends were surprised to find out I'm still working. Although my energy is down a little, it hasn't proven to be that hard. The chemo cycle is every three weeks. The chemo stays in my system and does its cancer-killing work, and its wear and tear on my body, in the first three or four days. I have enough steroids in my system during that time to prevent nausea and to keep up my energy, so there's only a couple days that I feel less than full speed. However, even with the benefit of all those steroids in my system, I've given up all hope of having a career in pro basketball. If only I was a foot taller. And 30 years younger. And had talent.

The two and a half weeks after that are the time needed for my body to recover. During that time, bone marrow production shuts down and takes awhile to restart. Bone marrow is where the blood cells are produced. Since the bone marrow stops working, about 12 days after chemo, my infection-fighting white blood cells reach their low point. I'm at my most vulnerable for picking up any bugs from people at that point, and have less ability to fight the bugs I get. This year, the timing means that Thanksgiving will be spent giving thanks for the good fortune I now have with new treatment options, but away from all the potential germs of our extended families. I'll miss being with the family. However, my nurse pointed out the positive: It increases my chances of having more Thanksgivings. Point taken!

I have a theory about surviving cancer. You have to be in good enough shape to go through treatments that add cumulative wear and tear on your body. It could be chemo, radiation or surgery. After the first course of treatment is complete, there will likely be the need for another of some kind, and maybe another after that. People sometimes aren't in good enough shape, so they don't get that next treatment. By the time they recover enough to handle treatment, the cancer has advanced too far to treat. The trick is to be in good enough shape to handle anything that they throw at your body.

That's why I'm still going to the gym four days a week, and climbing the seven flights of stairs up to my office twice a day, and getting extra sleep, and doing everything I can to keep my weight on. I'm in training to handle cancer treatment. Five years ago, the advice I got (and ignored!) was to "rest a lot". This time, my oncologist agrees with me completely. It's similar to how doctors used to tell people to rest after surgery, and now they get them up and moving as soon as possible.

The other part of this approach is that "training" to be in shape for treatment is one place where I can take charge. Beyond that, it's attitude. I look forward to each new chemo session, because I know that the chemo is attacking the cancer again. The impact on my body is a casualty of war needed to win the bigger battle. I also visualize the cancer shrinking like a prune, and withering under the heat of a blow torch. For me, these steps beat being passive. I'm sure other people have their own approaches, but this is what works for me.

Wishing the best for you and your loved ones.

Love,

Dann

Reaching Out, With Gratitude October 2, 2011

Friends and Family,

You wouldn't know it by reading my emails, but writing about myself is way out of my comfort zone. However, I've done my life one way, and at least as far as my health is concerned, it didn't work. As Genevieve told me shortly after my cancer diagnosis, and many times since, "you need to change your vibration to get a different outcome."

So that is what I am doing. Reaching out and telling you about cancer, and about private moments with my wife, and about our fears and our victories. It's as uncomfortable, and at the same time it is as uplifting, as anything I've done in my life. And I do it because I know Genevieve is right. If I'm going to live, it will not be possible by myself. Your support is what is pulling me through this. The near-miracle of genetic therapy that is only possible for a small percentage of lung cancer patients passed me by. To then to be one of the rare people for whom there was a completely random reason to re-test, and then to be found eligible, is as close to a miracle as we could hope for! All of your positive energy and prayers must be part of this!

The positives like this and the healing happen in lots of ways, every day. I am daring to allow my heart to be more open, and you are offering support that I could not have accepted before. I'm finding it in little ways, like stopping to talk with the cashier at Home Depot about recycling. Before I left the store, he reaches out to shake my hand. I'm not used to this kind of response! People on the street are smiling at me more often, and I realize it is because I am smiling at them.

Your emails and cards and phone calls and food have all been a huge boost, and I know that wouldn't be possible if I had not let you know what I needed. Thank you so much for allowing me to put myself out to you in this way.

My stepmother Linda read the email where I said that it takes a whole village to shrink a tumor. I came over to visit one day, and she had me close my eyes while she slipped a wristband on my arm that said "It Takes A Village" on one side, and "Dann Wonser" on the other. She had two bags of these wristbands made up, and gave them out to family and friends. It was one of the sweetest, most thoughtful things anyone has ever done for me. She had me in tears.

So what I am learning, and which I hope you can learn for yourselves without waiting for a cancer in your lives, is that an open heart brings love in more ways than we can imagine. I hope you will reach out for your own benefit, as you have already been doing for mine. It keeps paying off in ways we can hardly imagine.

Love,

Dann

New Lease on Life September 29, 2011

Friends and Family,

Genevieve and I went in for my chemo today, and got the best news we could possibly get. A month ago, Providence tested me for a genetic mutation that showed that I was not a candidate for genetic therapy. However, as part of OHSU's research protocol, they re-tested using a different lab. The OHSU test results show that I DO have the EGFR genetic mutation, so I AM ELIGIBLE FOR THE GENETIC THERAPY!!!! THE MUTANTS HAVE LANDED!!!!!!!!!!

WHAT THIS MEANS: At some point I will start the genetic therapy, Tarceva. This is the new "wonder drug" that was just approved for use a few weeks ago, and was featured on the news on many TV stations. Tarceva has been clinically proven to extend people's lives. Some shrink their cancer or prevent cancer growth for a few months, some benefit and stay on it for 4-5 years, and a few beat their cancer completely. When the day comes to start Tarceva, this last group is the group I will be fighting to join!I

But first, I will continue with chemo for a total of four to six rounds, three weeks apart. I had Round Two today. I'll be finished just after the New Year if I do six rounds. Then I get scanned regularly, and we wait until the cancer starts to grow again (unless, with your help, it is gone completely!). If/when it shows growth, I start Tarceva. As a double benefit, people with this genetic mutation usually have better success at shrinking their cancer through chemo. It's all good news today!!!!!!

I started worrying that this was too good to be true. I asked my doctor why I should believe that the second test is accurate and not the first. He said that the testing has a built-in bias in favor of spitting out false negative results. Also, sometimes the mutation shows up in one part of a tumor and not another, so it could have been missed the first time. Further, my oncologist thought from the beginning that the tumor visually appeared to be the EGFR mutation. These reasons are good enough for me and Genevieve to accept!

If I had not switched to OHSU and gotten in their research program, this false result never would have been found.There would be no reason to re-test other than for a research protocol. I am extremely fortunate that the mutation was discovered under these circumstances, and grateful to Macadam Forbes for providing health insurance that allowed me to switch my care to an OHSU doctor. I didn't have this insurance a year ago, so I would have stayed with a Providence doctor (through Genevieve's insurance) and never had the cancer re-tested.

I truly believe that all the positive energy, prayers, emails, phone calls, and all of your other acts of love are a significant part of why this was found. I am extremely grateful every day for having your support.

More about acts of love in the next email.

With love and gratitude,

Dann

Forecast: Falling Hair Sept 21, 2011

Friends and Family,

People keep asking me if I'm back at work. Since chemo 13 days ago, I have missed a total of a half of a day. Things are going great. When I met with the doctor last week he asked how I was doing. I told him I was pleased that over the first weekend the nausea was mild, and other than a couple of naps ( and no taste buds) things were pretty normal. He frowned. "Those side effects shouldn't happen. We'll up your steroids next time." What???? It doesn't have to be that hard???? Are you sure I'm getting the nuclear option for chemo here????

My hair is supposed to start falling out 10-14 days after chemo starts, so I decided to take charge. Why wait for the inevitable? Five years ago when I went through this, I had embarrassing days at the gym. On one of those days, hair was falling out in clumps in the shower, clogging the drain. This is a shower with about 16 shower heads and no private stalls, so I swoop up the hair and bury it in the garbage before anyone sees. On another day, I was talking with a gym buddy while drying off my hair. When I looked down at the white towel, it was full of black hair. (Yes, it was all black then!) Also, for many days Genevieve and I woke up rolling in hair. It was not pleasant. I do not want to repeat any of this.

So my plan was to buy hair clippers and have Genevieve cut my hair. I drag her into the store to get the clippers, with her grumbling about not knowing how to do this. The next day, when it's time to cut, she's still grumbling about how she might mess it up, and dragging her feet. In this one battle, I prevail.

Following the directions on the clippers, I pull out one of the longer attachments for a "practice round". We get through that without injury, so I switch it to the shortest attachment. This is when it gets tense.

Genevieve is a reluctant cutter, and I'm an eager cuttee. I start barking out orders like, "Take one long sweep all across my head. Go coast to coast," and "hold it closer against my head." She snaps back with every order. There are now two Chihuahuas in the room.

After she finishes, I say, "Now let's go all the way." I remove the attachment and hand her the clippers. That is where she draws the line and blurts it out. "I'm not there yet. I understand that you are, but I'm not ready for everything to change." For her, going bald is physical proof that the cancer, and all the risks that come with it, are real. How did I miss that? She's worried about death, and I'm worried about clumps of hair.

So now I get it, and the haircut ends. We'll do this in stages. Today is Day 13 and I'm sporting a very, very short crew cut. I keep pulling my hair to see if anything is coming out. I thought I saw a long hair on my hand earlier, but when I put on my reading glasses the hair turned out to be a line in my hand. I guess I'm getting a little over-sensitive to the hair thing.

I have more to say, but I'll save it for another day.

Love to you all.

Dann

Chemo Update: It's About Love September 14, 2011

Friends and Family,

I started chemo a week ago, and people have been asking how it's going. It's going great now, but we got off to a rocky start.

Last Thursday, the day chemo began, we started out meeting with the oncologist. He began the exam by telling us that my insurance company had approved use of two of the chemo meds, but denied the third. That's when my sweet, loving, gentle Genevieve showed a side of her that you would never know she posessed.

Have you ever walked by a car in a parking lot with a dog inside that has to defend his territory from lurking menaces such as you walking by? That little three-pound chihuahua attacks the glass again and again, teeth bared, just knowing that if he leaps at that glass one more time he is going to break through and tear off your face. As you circle behind that car and slide over to your car door, this little pup that is no bigger than a pastry snack looks more like 90 pounds of muscular pit bull. The glass starts looking a little more vulnerable. As the saying goes, it's not the size of the dog in the fight, it's the size of the fight in the dog. And YOU know he can't break the glass, but you keep eyeing all the car windows, sizing up the openings, just to make sure a maniac dog on steroids can't squeeze through.

All this to describe Genevieve in the doctor's office. She made it clear that she was angry with the insurance company, not the doctor. Still, the doctor leaned back ever so slightly, then glanced over at the door. He looked as if he was wondering whether the car windows were rolled up far enough. I suggested to him that we start all three meds, and sort out the insurance later. He immediately agreed to the plan, still with one eye on Genevieve. That's my little lotus blossom in action!

The rest of the day was comparatively uneventful. We sat in a semi-private area on the seventh floor of OHSU's Knight Cancer Center on the South Waterfront. As they changed chemo drip bags off and on throughout the day, I meditated and Genevieve did her artwork. I also looked out the window and thought about the beautiful views, and the value of the condos in the surrounding buildings. What else would you expect a broker to think about?

At the end of the day my oncologist came back in and informed us that he had written a lengthy letter of justification for the third med to the insurance company, along with fourteen pages of documentation. I am very appreciative of the doctor's willingness to take such a strong stand. To me, this is an extraordinary step, and one that he won't get compensated for. However, I am even more grateful for Genevieve's pit bull advocacy. I don't think that third med would have happened if not for her.

Here's how the chemo has gone since Thursday:

Friday - Feeling fine all day, steroids keeping my energy up and the nausea at bay. Food tastes a little funny in the evening.
Saturday - Taste buds almost completely gone. Nausea, gagging on water, try to find anything I can get myself to eat so I don't lose weight. Take a short nap.
Sunday - Same, but longer nap.
Monday - I can eat again! Work half a day, go home and nap.
Tuesday - Nearly normal again.

Chemo sessions are three weeks apart. Next week I'll have low energy and a high risk of infection, then gradually return to normal before repeating the cycle. I'll have four rounds and then a CT scan. If the cancer is shrinking, I'll have two additional rounds. If not, I'll stay off chemo until they see CT scans that show the cancer growing again. Then they'll try a different chemo cocktail.

A friend of mine, Keith, called the other day and asked what Geneveive was doing to cope. I told him about the different gifts that she is creating for me: New artwork designed for healing, meditating, using crystals, and more. He summed it up in a stunningly straightforward way: "It's all love."

And he's right. It's all love. Pit Bull Advocacy, art work, the prayers and positive energy you are sending me, the cards, the emails, the questions, the soup. It's all love, and it makes as much difference, or more, than the chemo. Thank you all for your gifts of love. They are what will keep me alive.

Love,

Dann

Time for a Fight Sept 7, 2011

Friends and Family,

Just a quick (for me) update. I had a minor medical procedure today. They put me under a local anesthetic and put a tube into a major vein by my heart. Then they inserted a permanent port just under the skin on my chest which they can use to deliver the chemo. They tell me that the chemo gets better diluted when it enters this much larger vein by the heart, so it won't cause the same kind of damage to my veins that using a regular IV would cause.

Before the procedure, a young man came in to tell me that he was a Fellow and would be part of the surgical team. OHSU is a teaching hospital, so I assumed he meant he would be doing the procedure himself. Except he looked like he just graduated from middle school! While he was going over the consent form, I was wondering if he had spent more time on a BMX bicycle than in an operating room. However, since I had been assured last week that this was a minor procedure, and I new there would be an actual doctor supervising every move, I wasn't worried.

In the operating room they put a "drape" over the part of my body surrounding the wound, so that everything that they aren't cutting remains sterile. I could feel the young trainee's surgical movements, as his arms were touching the drape. I kid you not, throughout the entire procedure I could feel him shaking! The surgeon was even giving him guidance on how to properly tie the sutures! I decided not to make him nervous by asking him if I was his first. However, I'm pretty certain we were both virgins.

With that taken care of, I'm all set to start chemo tomorrow (Thursday). I'm ready to kick some cancer A** and get healthy again!!!!!! That's where you come in. Your prayers, energy, thoughts (or more specifically, thoughts of emerald green light in my lungs if you like Genevieve's imagery), are all very much appreciated on Thursday. It takes a whole village to shrink a tumor.

With gratitude,

Dann

OK, So the Mutants Have Not Landed Sept 2, 2011

Friends and Family,

I spoke with my oncologist, and we didn't get the news we hoped to hear today. My cancer does not have the right genetic mutation to make me eligible for the targeted therapy. Curse the lack of mutants!

Now we move on from the disappointment and pull the positive from where we can. They continue to work on new targeted genetic therapies, and OHSU is doing a full genetic profile of my cancer. If/when new genetic therapies come along, they will know immediately if I qualify. However, the best news today from my oncologist is that the CT scan that I had last week showed no growth of the cancer from the CT scan that I had a month before. With all of your prayers, positive energy, and loving support, is this a coincidence? I think not!!! Thank you all so much for your part in this. I don't know how anyone could get through this without the love and support of friends.

At this point, all I can do is control what I have control over, and let go of the rest. I have recovered from surgery enough to be back in the gym this week, I'm climbing seven flights of stairs twice a day, I'm meditating on healthy lungs and shrinking cancer, and trying to process the emotional load that comes with all of this. And the best part of all this: It has gotten much easier to stay in the present and get the most out of each moment. That has created some very special moments with Genevieve.

I got my hair cut two weeks ago. I thought I should get people used to the shape of my head before it goes naked. This has turned out to be a good idea at the gym and when meeting with my clients, since some people barely recognize me now.

I was more than a little hesitant when the young woman at Great Clips with tattoos all over her arms, dark purple hair with a shock of blond in the front, and hair died in purple leopard spots on the sides of her head, looked around the waiting room and said, "Who's next?" I blinked, breathed in deep, and said, "I am." On my way back to her chair I had to remind myself that she couldn't have done that to her own hair. And then I reminded myself that the rest of my hair was probably going to be gone before long anyway. It's too late to turn back, so let go, trust, and let it happen. (I'm getting practice with that thought.)

Turns out she was very nice, and gave me a great buzz cut. Who would have thought that appearance wouldn't matter in a person who is altering your appearance???

Next Wednesday Genevieve and I will go to the hospital for a day procedure, where they will install a medication port in my chest to make it easier to do chemotherapy. Then Thursday I will begin chemotherapy. I'll do one round every three weeks, for four to six rounds, depending on how the cancer responds. In the past when I had chemo I had one rough weekend crashed on the sofa every three weeks, but was otherwise OK and missed very little work. I'm hoping it will be similar this time.

Love to you all, and thank you again for sharing this journey with me.

Dann

Think Genetic Mutants Aug 30, 2011

Friends and Family,

Let's start with this: Not everybody wants as much detail as I feel the need to share. If you would rather just get the highlights, respond to this email with "Give me a Lite!" or something similar. If you have heard enough, just tell me to take you off the list, and you can catch up on the blog (http://www.dannscancerchronicles.blogspot.com/) if you want an update. I will also not be in the least offended if you change your mind at any point in the future. Be warned: From this point forward I feel free to make these emails as long as I feel the need!

The waiting process to begin treatment got extended a week due to miscommunication between Providence and OHSU regarding what tests are being done, and when, to determine if my cancer has the genetic mutations that would respond to targeted therapy. We found out that my cancer doesn't have the first genetic mutation, so we are waiting for test results to see if I have the second mutation. There are only two mutations that have targeted therapies with proven results. We should hear the results by Thursday. If my cancer has this second mutation, then I will qualify for the targeted therapy, which is more than twice as likely to be effective, and has almost no side effects compared to chemo. GO MUTANTS!!!

Regardless of which path I end up taking, treatment will start next week. I'll send you an update as soon as I hear the news.

I want to share two stories from a woman who has been a great inspiration in my life. I used to work in a related field with a cancer counselor at Providence Medical Center named Katie Hartnett. After working with her for many years, I heard that she was diagnosed with cancer herself. I ran into her one day at Providence, and after a couple of minutes of polite chit-chat, she said, "I don't know if you've heard, but I've been diagnosed with cancer. It's a Stage IV cancer that is so spread throughout my body that they don't know where it even originated." I awkwardly told her that I had heard the news. She said, "Isn't it a blessing! I've had all these wonderful patients over the years to teach me how to deal with it!" When we finished talking, I walked away feeling a tremendous rush. I was inspired! It's odd, but I thought, "WOW! If I ever get cancer, THAT is the kind of attitude that I would want to have!"

About seven years later, in 2006, I was diagnosed with lung cancer. Katie was one of the first people that I contacted. She was still alive, and cancer free. With that kind of attitude, of course she was! She shared a couple of things that were very meaningful to me, and I want to share one of them with you. She told me that when people are diagnosed with cancer, she is much more concerned with how the family members are coping than with how the person with cancer is coping. I trusted that she knew what she was talking about, but I didn't really get it.

After surviving cancer for the past five years, I get it. All the support comes to me, but Genevieve's whole world is being rocked. Her lover and partner may not live, but she has no control of this. Her financial situation may change dramatically, but it would feel heartless to start making financial plans to be without me. People ask Genevieve, "How is Dann doing?", but very few ask her, "How are YOU doing?" Even if they ask the question, how does she answer? If she's doing OK she looks heartless, and if she's not, then she should "suck it up" because I'm fighting for my survival and need support. It's hard to show her fears to me, since she is sure that faith that I can make it is one of the most important things that she can offer me. Where does she find room to feel what she really feels, and still be supported? If you have had any similar experience and have thoughts about this, I would love to hear them.

OK, I'm off my soap box for the day. More to follow when we have some news.

Love to all.

Dann

Thursday was a Great Day August 20, 2011

Friends and Family,

Thursday turned out to be full of good news. First, we got the best news we could possibly hope for at this stage: My MRI scan showed that the cancer has not spread to my brain. The only downside... I have no excuses for my mental lapses now.

Next, Genevieve researched oncologists who specialize in lungs, and three different sources came up with the same two names. We saw one of these doctors at OHSU Thursday, and we thought he was excellent. He was also more encouraging than we expected.

Dr. Lopez-Chavez told us that the survival statistics that I found on the internet are too general to apply to me. I'm in the lowest risk category for for this lung cancer for a lot of reasons. First is my youth. (A little slack here please - It's all relative.) Next, cancer behaves differently for non-smokers than for smokers, even when it is the exact same type of cancer. Third, I have a category of cancer called "non-small cell", which is less aggressive. Finally, my physical condition is excellent, with the exception of that pesky cancer problem. What makes treatment more successful is if you can treat it more aggressively, which you can do only do with people who are in good physical condition.

Dr. Lopez-Chavez also offered the possibility that I may qualify for one of two new therapies that are targeted to the genetics of that specific cancer. My biopsy will be tested. If I qualify, I will start on one of these treatments first. Odds of shrinking the cancer go from 30% for chemotherapy, to 60-70% for the targeted therapies, and there are no major side effects.

In most cases, the targeted therapies and regular chemotherapy are expected to shrink the cancer, not eliminate it. The plan is to try one therapy for a full course, then stay off all therapy until the CT scans show cancer growing again. Then the process is repeated with the next therapy. Some people are fortunate enough to become cancer free. Otherwise, it simply buys more time. Meanwhile, new therapies keep coming out that are more and more successful, so the more time we can buy the better. Someone very close to us is a wonderful example of this, which gives us great hope. She had a breast cancer that had a 10% survival rate. After a new therapy was discovered, the survival rate is now 90%, including her. I just need to hang around long enough to have her success.

The plan is to start chemotherapy September 1st. If we hear that I qualify for the targeted gene therapy, we would try that first, and start around the same time. We'd like to start NOW, but I have to heal from surgery before I can do either.

I'm preparing in advance for the hair fallout. A very short haircut is on the way. I've been there before, and I want to be ahead of the curve this time - Get used to it so people will recognize me, and so I'm not shocked when I look in the mirror.

A heartfelt thank you to all of you who have reached out to us this week. I have been brought to tears more times this week by your reaching out to me than by the cancer itself. It is awkward and uncomfortable to talk about myself, something that you wouldn't guess by the length of my emails. However, I value sharing and connecting enough to get over this. Feel free to ask to be taken off this list, or to delete them from your inbox before reading if this is far more detail than you care to get. They're probably not going to get any shorter. It's the only way I know how to share, and it helps me keep up my own optimism.

Love to you all.

Dann

Test Results Aug 16, 2011

Friends and Family,

We just got the test results, and they are not at all what we had hoped. My surgeon just called and informed me that I have another form of lung cancer.

This is a different lung cancer than I had removed 4 years and 10 months ago. My surgeon is at a complete loss to explain how a non-smoker can end up with two different types of lung cancer.

The cancer is spread out evenly in small dots throughout all four remaining lobes of my lungs. Because there are no healthy lobes, surgery is not an option. From what I understand from what the surgeon told me, and from doing some of my own research, treatment for Stage IV is used to extend life, but is not expected to be a cure.

We won't know any more until we meet with the oncologist, and we won't know when that will happen until he returns from vacation on Thursday and sees when he can fit us in. I am also going to be scheduled for a brain scan, since the brain is the first place that lung cancer will usually spread.

I know of two people that have completely beaten Stage IV cancer. I don't know if I will be the third, but I do know that I will give it everything I've got. I beat Stage III, which is about the best preparation anybody can get for beating Stage IV. I will continue going to the gym, climbing stairs, walking (sometimes with golf clubs in my hands), eating healthy, and anything else that I can think of to beat this. I will also do everything I can to enjoy life with Genevieve, since we don't know how long we will have together.

There are two things that I want to ask of you that I found very helpful the last time I went through this. The first is to send your prayers/positive energy my way. The second is to offer encouragement rather than sympathy. Sympathy = giving up: Encouragement = hope, and energy to fight.

More news will follow as soon as we know more.

Love to you all.

Dann

Tales from the Dark Side Aug 12, 2011

Family and Friends,

The surgery went well, and I live to tell the tale. Things got entertaining at the onset when the nursing assistant came in to shave my chest around the surgery site. Her eyes got big, and she looked at that hair like she was going to be in for the fight of her life. She grabbed the electric razor with two hands and started stabbing at the hair, like she was trying to cut off the head of a snake. You could almost see her lips move, saying "get 'em! get 'em!" She stabbed and scraped and stabbed and scraped, until all the hair was dead, and one nipple was raw from a misdirected attack. She offered to "even things up", but I told her I could manage the other side by myself later. I'm not sure which of us was more relieved.

When I woke up in the Recovery Room I had something sticking out of my chest. They called it a "chest tube", but I know better. I've seen that stuff sold in 50-foot rolls in Home Depot, and they called it a garden hose. If God would have intended us to do this to ourselves, Adam would have had two less ribs to begin with.

If you've never had IV morphine, you should know this. It's a great pain killer, but it can also make you nauseous and turn as pale as a sheet of paper before you can count to five. After more than a little IV morphine, I began projectile vomiting into a bag. Genevieve said that the bag shot out the way those little party favors uncurl when you blow air into them. I think air is a better choice. Perhaps because I was loaded to the gills on morphine and it didn't bother me in the least, it was almost worth it to see the look on Genevieve's face.

It's now two days after the surgery, and I am back at home. The surgery was a success and the biopsies were taken from all three right lobes. Dr. Handy had a pathologist in the operating room reviewing the samples immediately, but they still have no idea what I have. He was hoping that the answer would be clear before we left the operating room. Since it is not, he expects that we won't know for another three weeks, which is how long it will take for samples to be tested and cultured. Until then, we will know nothing more than we know today.

We have no idea how this is going to turn out. All we can do in the meantime is to enjoy life to the fullest, and count our blessings. None of us know how long we have.

I count each of you among my blessings.

Love,

Dann