Ob la di, ob la da

I have not blogging much at all of late. There’s a lot of good in that and a fair amount of bad as well. I’ve been busy as a one-armed paper hanger. Work is backed up. I’m rarely away from my desk. I’m not taking my breaks or walking like I should so my weight is creeping upwards ever so slowly. Of course, all that busy at work makes my days fly by, too. When I get home there is a whole other life that gets crammed into the few hours between 4:00 pm and 8:00 when the kids go to bed. There’s Little League practice twice a week and now games twice a week as well. Therapy for Danny once a week. The ever present laundry and my FaceBook addiction. And filling every spare minute in between is my photography passion.

That’s the good stuff. I’ve been too busy living life to spend much time blogging about it. On the negative side, I’m coming up on my 25,000 mile (2.5 year) check up. As always, I start worrying out of the blue. This time my location of concern is my right hip. It has been hurting for a couple of months now. But the last few weeks it’s become so sore that it wakes me at night and I can barely walk up stairs. So this check up, I get a bonus bone scan!

Tomorrow is my chest/abdomen/pelvic CT. Thursday is my bone scan. Then I have to wait until the 14th (!) before I see my oncologist for the results. I’ll never make it. I haven’t even had the scans yet and I want to call for the results already. Yet, I hope I don’t here from her office before my appointment, know what I mean????

Of course, when everything turns out to be just fine I will have made it two and a half years beyond treatment for Inflammatory Breast Cancer. THAT will be a post in and of itself.

In sadder news, Mothers With Cancer lost another of it’s own this week. Alabama Pink (Manda) of Whoa, Camel! fame has lost her battle with leukemia. She leaves behind a beautiful 3 year old son, Alastair and the love of her life, Adrian. You can read about her passing on Adrian’s blog Rainbows! Puppies! Leukemia. Say a little prayer today for Manda’s family.

If I could save time in a bottle…

One of my new co-blogger friends has been victimized. She was given hope for a cure for her cancer. A radical new surgery, Pelvic Exenteration, was set before her like a glass of cool, sweet water to one dying of thirst. A cure. Hope against hope. Life with her 6 year old son. A future.

But like water in the desert it proved to be a mirage. Her cancer has already spread beyond her pelvic cavity, up towards her liver. This radical surgery in which she will lose so much of herself, cannot cure her any longer. It is too late for that. And it cannot give her greater longevity. Time, is the most precious of commodities.

What it can give her is quality of life in the time she has left.

A consolation prize at best.

Jen is feeling understandably down this week. Stop by and read her powerful words upon receiving this disappointing news and offer her support and encouragement.

Laugh Cancer Into Submission

Laugh, and the world laughs with you.
Cry, and you find yourself all alone in your room.

What? Is that only at my house?

Humor is the lubricant of life. It eases our way through tight situations, keeps the friction from getting so hot that it causes permanent damage and generally allows for smoother interaction between all the parts that make up our hectic lives.

Humor, it can be said, is a miracle fix-all.

Toward that end, Young Survival Coalition and Stand Up to Cancer (SU2C) are combining their significant resources and those of ABC, NBC and CBS to air a fund raiser on Friday, September 5, 2008. Money will go toward all the cutting edge research we read about in the news. Research the government doesn’t want to fund. Research that will save lives.

We are so close to a cure for cancer. So close. Close enough to a cure that our children may not ever have to worry about dying from over-producing, vagrant cells that overtake healthy cells and kill them. Close enough that many cancers are already considered “chronic diseases” instead of terminal.

Close enough that even the little bit of money that I am able to spare can help the cause.

Won’t you please help, too?

Mark your calendars. Program your TiVo or DVR. 8:00 p.m., Friday, September 5, 2008. Help laugh cancer into submission!!!

Ask me no questions, I’ll tell you no lies

Today was my seventh 3-month follow-up oncology appointment. For those of you who don’t feel like doing the math this late in the day, that’s 21 months post-treatment. 21 months No Evidence of Disease (NED). 21 months of living life. Of course, there is always bad with the good. It was also 21 months of waiting for that other shoe to drop. 21 months of worry. 21 months of mental Do Before I Die lists and At My Funeral Memorial Service lists.

I did get a clean bill of health today. My blood work was all normal. My lymph nodes were all fine. I have no bone pain, pulmonary issues nor headaches beyond the norm. In short, I rock Survivorship! Knock wood.

This 3-month appointment was different than the others, however. This time, I asked questions. This time I wanted more than a checkup. I wanted information too.

I’ve already shared that I purposely avoided IBC information while I was undergoing treatment and why (read all about it in my memoirs, Why bad Focal Points Happen To Good People) also that I don’t have a great track record with asking my doctor cancer questions. The last time I worked up the gumption to ask a scary question I DID NOT like the answer. Can you say 90% recurrence risk?

So I started small, with the nurse who took my blood pressure when I asked her to make copies of my pathology reports. I’ve somehow lost them over the last 2 years. (Besides, amazingly enough, the details were fading and I was no longer sure I had my facts straight.) Wow. She came right back with them. She didn’t even tell me I would need to pay a small fee for copies like the old office. So far so good.

When Dr. Villa came in we hugged and I showed her the new pictures of the boys. Then I told her all about this site and how excited I am about it. She asked for flyers or cards – which I have not made yet. My bad. Then we got down to business. Thanks to posting here I’ve developed the courage to ask the questions I’ve been wanting to ask for a long time.

I asked her about the original statistics she had given me about recurrence. She had told me most recurrence occurs at 2 and 5 years. And I’m coming up on the 2 year mark. She said that she had forgotten that I was triple negative when she had given me those numbers. The figures for triple negative breast cancer are more like 12 to 18 months. But I am beyond that. And that is very, very good. Perhaps, she says, you’ve fallen into that niche of ones who sneak through.

More good news. This was working out better than I’d hoped. So I asked about the infamous Cancer 5 Year Mark. “Does that hold true for Inflammatory Breast Cancer also?”

“I’m going to say ‘yes’,” she said. Yes? Yes! Yowza! Something to work towards!

And I asked about preventive clinical trials that I may qualify for. There are none at the moment. It’s nice to know she’s keeping her eyes open for me. I’ve wondered about that for a while now. She did mention two new bits of research that she wants to keep in mind for me.

We will check my Vitamin D level with my next blood work. Studies have shown that breast cancer patients who are deficient in Vitamin D have almost double the chance of a recurrence or spread over 10 years time and are 73% (!) more likely to die. Holy cow!!! It’s not about drinking milk. It’s about getting 15 minutes in the sunshine without sunscreen daily. Do it! 73% is too huge a risk not to.

She’s also closely watching Avastin for it’s benefits in preventing recurrence.

I had read about both when they came out so it’s nice to know I’m keeping up well enough on my own.

I want to send a big Thank You to every one of the women at Mothers With Cancer. The sisterhood that is forming before my eyes is already having its effects. Empowerment. Strength. And this is only the beginning.

Survivorship

Today I am going to regurgitate. Isn’t that a lovely word? In this case, however, it is important. My friend Susan from Toddler Planet has written an important post. She’s a rocket scientist you know. That equals much smarter than me and better able to explain things too. But since some of my readers who shall remain nameless (Mom) do not actually click on any of the links I so painstakingly place in my posts, I am forced to copy WhyMommy’s post here.

It has to do with recurrence of Inflammatory Breast Cancer and why we survivors are never quite free of it’s specter. Here it is in all it’s reality…

“Inflammatory breast cancer is a terrible, terrible disease. Until the late 80’s, it was seen as a death sentence. 98% of women with IBC died within the first five years, most much sooner than that. There have been several major medical advances since then, including new types of chemotherapy and the discovery that IBC patients should do 6 months of chemo before surgery, not after. Women are living longer and better since these discoveries, and new research is gearing up at the MD Anderson Cancer Center in Texas, the IBC research clinic in Michigan, and in isolated labs elsewhere. Hopefully, one day we will understand what IBC really is, and how best to treat it. My hope is that we can get better at early detection, as that makes all the difference for women who must fight this nasty disease.

For it is still deadly. Only 40% of IBC patients are still alive just 5 years later. Over 90% of IBC patients, even if they get the full treatment of chemo, mastectomy, and radiation, will suffer a recurrence within the first few years. That means that the cancer comes back.

I’ve cut my risk by having a double mastectomy — by as much as 15%, because 15% of recurrences are in the breast tissue. But the rest recur in the bones, the liver, the lungs, and elsewhere.

IBC patients have a higher risk of recurrence because of the nature of this disease. Whereas most breast cancer begins in the ducts or lobules of the breast, slowly spreading outward to form a lump, IBC quickly infects the lymphatic system (a system of little channels like blood vessels that carry waste away from tissues), so the cancer spreads quickly to the lymph nodes and, if not caught there, throughout the body.

I had cancer in my lymph nodes. Two were still full of cancer when they were removed at surgery. Two more had had cancer in them, but the chemo ate it. All 20-30 of my lymph nodes on that side were removed, just in case. But it is quite possible that cancer infected them, and escaped elsewhere in my body, where it grows and waits.

IBC survivors understand that this disease moves fast and we must be aware of signs of recurrence. We take our tamoxifen or arimidex, two magic pills that will help ward off recurrence by blocking our estrogen (my cancer feeds on estrogen; it’s known as being ER+) each morning. We push through the side effects (early menopause and all that entails) and we try to be grateful for the chance that it gives us to escape or postpone recurrence.

Tamoxifen is screwing with my moods. Big-time.

We have blood tests, MRIs, PETs, CT scans, and/or bone scans every three months, and anxiously visit our oncologists for the news.

Is there metastasis? Or can I go about my business for the next three months, instead of going back to chemo?

We check ourselves, breast exams with or without breasts, because skin mets are most likely going to pop up along the mastectomy scars.

Please, God, let that little bump be just a pimple.

We worry, but we also give thanks. For every day that we have here on earth is one that we may not have had without the miracle of modern medicine.

Just as your presence saved my spirits, when I felt most alone and desparate, I know that chemo, surgery, and radiation saved my life.

When we hear the news “metastasis,” none of us know how we will react. Any reaction is okay, of course, but it is a fear that many of us carry around, below the surface.

I’m ready. I hope and pray that it won’t happen for a very long time, but my friend Ursel lived well through metastasis and weekly chemotherapy for years. I am not afraid.

There are not many long-term survivors of inflammatory breast cancer. A recent accounting of 5+ year survivors on the IBC support list rounded up 30. Although long-term survivors are less likely to be on such a support list, it’s still very much a situation where you can pretty much name the survivors who have made it 10 years or more.

If I can make it 10 years, my children will be 13 and 11. They will have had a childhood.

I know one survivor, the beneficiary of an early bone marrow transplant and extreme chemotherapy, who has survived 17 years.

If I can survive 17 years, my children will be 20 and 18. They will be college boys, ensconced in a network of friends and with happy memories of their childhood and teenage years.

I am determined to make it 20 years, with this new crop of survivors who had 6 months of chemo before the double mastectomy, and to increase my odds with exercise, diet, and daily tamoxifen.

But if I make it less than five, the baby will not even be in school yet, my oldest will still be too young, my husband a widower at not yet 40, and everything falls apart.

So I am determined to move on and make the most of every day that I have here on earth, making happy memories for my boys, my family, and friends, storing up the sunny days against the days of chemo and hospitalization that will one day, hopefully not soon, come again.

I hug my children close, willing them to remember their mama’s love, no matter what may come.

So that’s what I mean when I use the word “recurrence.” It is a very real scepter that looms in front of IBC survivors, just as with other breast cancer survivors, but with perhaps more certainty.

Perhaps that’s why the symbol of breast cancer is a shiny pink ribbon, but the symbol of inflammatory breast cancer is an angry red flame.”

Isn’t she incredible???

I am not re-posting this to scare any of you. I just want to share the realities of life. Personally, I don’t think in terms of my time on Earth. I refuse to do the math and project B & D’s ages should I live X number of years.

I don’t dwell on the possibility of recurrence. Maybe because I consider it a probability. Or maybe because I’m just superstitious and don’t want to call up the devil. But I am vigilant in my non-existent breast exams. The potential for skin mets had me freaked for over a week! And I do take care to plan for the future.

Last month I went to a retirement seminar through work. I learned that should I have a recurrence, I will be better off staying at work in whatever capacity possible. Turns out if I pass away while still employed my family will receive an entire substantial insurance policy above & beyond my life insurance. I also noted that a disability retirement would net more money than if I took a regular retirement. Perhaps most important of all, the financial adviser showed me how to ensure my family will retain the most they possibly can of the monies I leave them.

These are the thoughts that parade through my head when I find a pimple on my scar line, or a lump on my upper chest or just plain feel run down too many days in a row. This is survivorship.


Letter to WhyMommy

My friend from the blogosphere, WhyMommy, just had a rather unwelcome moment of insight. Maybe it’s because the holidays are looming and that always opens those lonely places in our heart that long for the warmth of family and acceptance. Or maybe she is just now, with the end of her cancer treatment in sight, thinking thoughts that her subconscious was too protective to allow her to entertain before. Either way, it has just occurred to my friend that she has a terminal illness, Inflammatory Breast Cancer. Her post is raw. It’s an “Ah ha!” moment of the worst kind. For that clear view of her open wound, I send her the biggest cyber hug I can muster – even as I disagree with her as politely as possible.

WhyMommy – I would like to point out that you are in no way, shape or form to be considered “terminal” at this point in time. That card has most certainly not been played yet, my dear. You have cancer, yes. A disease that quite often is terminal, but nearly as often is not. You are early in the fight. Round one is not over yet. It is far, far too early to throw in the towel.

You’re probably thinking right now that I have missed the point of your post entirely. That I am turning a blind eye to those feelings – maybe on purpose. Eh, there could be some truth to the last bit. However, I clearly “got” your post – perhaps too well. I vividly remember my own “Ah ha!” moment when I looked the possibility of a very early death in the eye.

I’ve always envied you your bravery in facing your cancer head on. While generally I am a research fanatic – knowledge is power- once I was diagnosed I stopped my internet research altogether. Statistically speaking, statistics have not been my friend. Ectopic pregnancy with no risk factors, son born with a genetic disease effecting 1 in 50,000 boys, breast cancer under the age of 40, Inflammatory Breast Cancer that is less that 5% of all breast cancers… need I go on? I tend to fixate on figures like those so I knew looking up the odds of survival, etc on the internet would not really be in my best interest. Yet I still feel cowardly for not doing so.

At any rate, I was sitting in my oncologist’s office feeling the very picture of health. I had already finished my chemotherapy and had my mastectomy. At last, I thought, I am officially “cancer free”. Bolstered by this new lease on life I felt confident enough to ask the question I had never dared to ask before, “What is my risk of recurrence?” Without hesitation or apology she looked in my eyes and said, “90 percent.”

90 percent.

Just like that and my life was over. 90 percent. 90 percent? WTF? Why had I gone through all this? What was all the chemotherapy and the neuropathy for? The hair loss? The radiation? The surgeries? I was still just going to die. It couldn’t be helped. I would leave my little boys without a mother. 90 percent. I knew I shouldn’t have asked.

I don’t really remember what I said exactly or what she said. I know she explained that it was 90 percent for ME because after 8 rounds of chemo I had still had 7 positive lymph nodes. Whatever. It was still 90 percent & I was much happier before I knew that.

Terminal. That’s how I felt that day. She might as well have told me to go home and get my affairs in order. I mourned my life that night. You know, the life I used to have – before the diagnosis. The life full of health, vitality,and that air of indestructibility. The life I will never have again.

Before my next appointment, though, I had come to realize that life is terminal. We start dying the day we are born. Cancer may very well be the way I die but the when has yet to be decided. So when I walked into my oncologists office the next time, I laid it on the line. “That 90 percent recurrence risk. That’s not working for me. What are we going to do about that?”, I said. And we’ve worked from there ever since.

There is no reason I can’t be one of the 10 percent without a recurrence. Statistically speaking, that’s how my life has been going. WhyMommy, don’t borrow trouble. This could be your first and last run in with cancer. Sure, you’ll spend the rest of your life looking over your shoulder. So will I. You may even tiptoe so as not to wake the beast. But that doesn’t mean you have to carry that burden around forever. They may not know how to cure cancer. But sometimes we get lucky. Either way, it beats the hell out of living in fear. Take it a day at a time, a month then a year at a time. Make it past the one year mark like I just did, then past two and hopefully five. Soon, you’re home free. There’s nothing terminal about that. That’s just life.

Everyone visit WhyMommy and give her a bit of emotional support. It’s a hard time of year to face your mortality.

The Good, the bad & the awesome

There was a time in my life when being right was the only thing that mattered to me. Nowadays, I am afraid to be right more often than not. How ironic. Well, yesterday was no exception.

After a year. YES, a whole year, I managed to get D back to see his eye specialist in Bakersfield. We were supposed to go back last January but I had my DIEP flap surgery & then weekly trips to UCLA for post-op follow-ups. Then implant expansion visits – all of which had to take place on Thursdays. Thursdays are the only days that Dr. Tawansy (D’s specialist) does clinics in Bakersfield). You can see why it just never worked out. Plus D’s eyes seemed so quiet and weren’t giving him any problems… that is, until a month or so ago.

About 6 weeks ago he began pressing his left eye quite a bit and pulling on his eye lashes. The eye pressing is pretty common for vision impaired kids. Press on your own eyes. Go ahead. Do it right now. See the spots and lights? Well blind kids can see them too. And that’s the only thing they can see. So you can understand the attraction in eye pressing for them. It can become almost like a masturbation thing for them. (NOTE: this is my personal take on things not the official party line). So I wasn’t so much worried about the eye poking / pressing but I had also noticed that his left eye had seemed to have shrunk a bit, quite a bit it by my estimation.

One of the major characteristics of Norrie’s Disease is small eyes. But at times I think I can see beyond the corner of D’s eyelid to behind his eye. I’m no expert here, but I don’t really think you’re supposed to be able to do that. Think of your eyes as place holders for your eye sockets. If your eyes are too small the eye sockets don’t grow properly and thus your skull can grow improperly also. Eventually, your skull can become misshapen causing all sorts of other issues. One of the things they do to stop this is make schleral shells. So I made it a priority to take him in.

Well, thankfully, I was wrong. His eyes (both of them, though the left a bit more than the right) have shrunk all right. Not near as much as I feared. And they are still quiet. By “quiet” Dr. Tawansy means that the pressure in his eyes caused from scar tissue built up inside is not high. There is no inflamation or anything else wrong. He is not concerned with his sockets so there is no reason for us to consider shells, though the Dr did say they may keep his fingers out of his eyes. And he took D off his meds for glaucoma. Ha! All in all, a very, very good appointment. And best of all, Dr. Tawansy is very interested in going to the Norrie’s conference in Boston in July 08. Yeah!

—–

In other not so good news, I found out last night that an acquaintance of mine has had a recurrence of her breast cancer. She is the first person I’ve personally known with breast cancer. I remember her losing her hair (she’s a hairdresser – how tortuous for her), having 2 lumpectomies because they didn’t get it all the first time and finally a mastectomy for the same reason. She had the TRAM Flap reconstruction surgery which went very badly for her and her entire abdomen herniated. But since then, maybe 3 years ago, she’s been well.

In December she was complaining of needing glasses so she made an appointment with the eye doctor who found a tumor behind her eye. It was metastasized breast cancer. They did radiation and chemo and now the tumor is gone. But as we know… once cancer metastasizes it is incurable. I feel sick for her. She was like me. She was open about her cancer. She would talk freely about it. Now, she doesn’t speak of it at all. She is trying to come to grips with the knowledge that she will die with this disease and from it. What savings she has will be spent on her treatment of it and her healthy days will be spent waiting for it’s return. She has told her doctors that she does not want to know how much time they think she has. She only wants to know what treatments they think she needs and what the side effects will be. Then she will decide whether or not she will do it. That is very much what I would do, I think.

She is living my biggest fear. What do you say to people when you have metastatic disease and they ask how your treatment is going? Do you say something like, “fine… today.” or “good. But I’ll still die.” No wonder she doesn’t want to talk about it. What is there really to say? At that point isn’t it best to just live your life for every moment you can suck out of it?

————

Enough depression. Better news. Here’s a focalin update on B. Today I took him to school. I was still talking to another mom outside when his class walked by in a line. He was so focused on what he was doing (paying attention to the teacher !!!) that he didn’t even see me standing 2 feet from him. What a different child he is now. He is incredible!