Category: Cancer

Categories
ACS Blogger Advisory Council Cancer Mothering Parenting

In Memory of Susan Niebur

I found out yesterday that a mother I know of two young boys, who was fighting a very aggressive form of breast cancer, inflammatory breast cancer, had passed away.

It shouldn’t have been such a shock- Dr. Susan Niebur has been writing about her battle with cancer for years, on her blog, Toddler Planet.  She had already survived almost 5 years since she was diagnosed with IBC, and had lived almost 3 years beyond the time most IBC patients live.  Susan herself realized, one day she wasn’t going to be here- but that was always one day in the future.

I met Susan in 2010 in New York- we served on the American Cancer Blogger Advisory Council, and we had a meeting the day before the BlogHer conference.  Susan had an aura to her.  I knew the first moment I met her, she was fighting cancer. I didn’t know what kind, or the details, but she didn’t focus on that.   I remember when we were taking a tour of the Hope Lodge, she had to rest on the bed in one of the rooms.  I remember thinking at the time, having just fought thyroid cancer a year before, I was so lucky- that the cancer I had was very treatable and curable.  Yet, I was amazed that Susan was even there- working on a cause she believed in.

And at the time, she made me think. Not by saying a word, but by her just being there, living her life, doing what she wanted. It was such a powerful example for me.  Some people will never have to endure a sliver of what Susan went through, just to get a few more years of life.

It is so easy to take what we have for granted.  To complain about the small things, worry about really trivial things.  I realized I was lucky- for whatever reason. It could have been, just as easily me with IBC, fighting to live.  I had a second chance to live my life, and not have to battle every day just to live.  I didn’t have to lie down on a bed to rest, after walking down a hallway.  When I heard her speak in the meeting, and give some background into her condition, she didn’t have to say it- I knew she going to die- someday. But that day was far off.  She was strong, and determined. She had two little boys who needed their mother.

I followed Susan’s blog loosely the past year and a half since the day I met her.  If am to be honest, her blog made me uncomfortable.  I loved her words- she was such a gifted writer. But something about having a condition that can claim your life, shift your foundation, it hit too close to home for me. I don’t like to think about dying, and it breaks my heart to hear about cancer patients who have to fight so hard just to make it to another day, and to think about the children who will be left without their mother.

In some way I wanted to keep the vision I had of Susan in New York- she absolutely glowed when she was speaking, sharing her ideas, and working with people. I wanted to remember that about her.  She gave me hope and was an example to me, that no matter what comes your way because of cancer, you can make the most with whatever time you have left.

I read the last post Susan wrote on her blog, on January 22nd.  I saw it linked from my friend’s Facebook update.  My heart sank as I read her post- hospice was coming to her home, but Susan was still fighting. She wasn’t ready to call it quits or say good-bye yet.

I checked her blog daily, since January 22.  The one day I did not check it, Monday, was the day Susan’s battle with cancer ended.  I received an email from BlogHer yesterday their thoughts were with Susan Niebur’s family, and I knew she was gone.  That one day- that seemed so far off, had arrived.

Susan made me realize again yesterday, how precious life is, and how lucky I am- how lucky we all are really.  Not everyone survives cancer.  Not everyone has the quality of life they had before cancer. But everyone can live their life in the best way they can, and we can appreciate the small things. Being alive to give your child a hug. Telling your friends and family you love them. Following your passions.  Living your dreams.

Susan was an  astrophysicist, and had worked at NASA headquarters. She wrote numerous academic papers, but her mantra on her blog for her life was simple. It was, “All that survives after our death are publications and people. So look carefully after the words you write, the thoughts and publications you create, and how you love others.  For these are the only things that will remain.”

For the short time I met Susan and worked with her, it will stay with me forever.  She was a great voice for cancer awareness, and surviving cancer.  She will be missed, and my deepest sympathies to her family and friends.

I found this a few weeks ago for another friend, whose mother had passed away, and I thought of it yesterday for Susan. The stars were one of Susan’s passions.

Rest in Peace, Susan.

“Perhaps they are not stars, but rather openings in Heaven where the love of our lost ones pours through and shines down upon us to let us know they are happy.”

Author: Unknown

You can make a donation in Susan’s honor at The Inflammatory Breast Cancer Research Foundation

You can read more on Susan’s legacy at Care2 Make a Difference

Categories
Cancer Family & Friends Health Running

Reflections in Running

This is the first post I’ve had about running in a while.  I have been running- not just as much as I would like to.

There are a lot of reasons why- from having time with my kids, work schedule, having my house on the market, recovering from injuries, and surgery, managing my health, eliminating stress, the weather, to not enough hours in the day. It is hard when there is that thing you really like to do, but it seems like everything else has to come before it.

This is where I have been for several months.  I have felt fortunate if I could fit a short run in, over my lunch time, a few times a week. The past few weeks, I have really started to notice I have been missing the longer runs, and pushing myself.  I feel like I haven’t been doing any runs that are challenging- like I’ve hit a plateau.

A few weekends ago, I decided I was going to get back on track, and while camping with my family, I decided to go on a run.  This was at 8,900 feet. It was the middle of the afternoon and it was hot.  I didn’t know how far I would even be able to run, since I’ve not been able to keep up my distance runs.  I decided to just go- and see where I ended up.

I ran along the forest road, and there was a creek I followed for a while.  There were hills.  There was an occasional car that would drive by, but other than that, I only heard my breathing, the sound of my shoes hitting the rocks, and the water from the creek.

Every time I finished one hill, there would be another.  It wasn’t quite the trail I had been hoping for, but I pushed on.  The first mile seemed to take forever.  When I had finished it, 11 minutes had passed.  Considering how many hills there were, I didn’t think that was too bad.  I decided to see if I could run another mile.  The trail flattened out, or at least the hills weren’t as steep for most of the second mile.  As I finished the second mile, I was getting tired, but wanted to go another half mile, so at the end I would have ran 5 miles.

As I turned the bend, with a third of a mile to go, there was the steepest hill yet!  It struck me how much running and life go hand in hand out there, on the hot, isolated trail.  Just when you think you are done with the steep hills, another one can pop up- seemingly out of nowhere, to throw you the most difficult obstacle yet.  I knew if I had seen that hill before I decided to continue, I would have turned back. I considered turning back, but that spark and determination I find so often when I run, kicked in.

I started up the hill, and half way up, it didn’t seem that hard.  Another life lesson- sometimes things seem harder than they really are, until you just start to work on them.  Before I knew it, I was running down the hill, and had hit my 2.5 mile mark.  I turned around, and ran right back up the hill, which my Garmin told me was a 13% incline.  The hill didn’t seem as hard, and I was rewarded with a lot downhill time on the run back.

I was in mile four, when I caught up with the creek again. It sounded louder- almost like it was cheering.  Or it was me hearing that, because I was really cheering myself on.

I hadn’t run this far or at this level in almost a year, but yet I was out on one of the hardest runs I’ve ever done, and I was minutes away from finishing.   As I finished the run, I was reminded why I had missed longer runs so much.

Running mirrors life.  There are ups, downs, successes, failures, pain, elation, unexpected twists, turns, hills, and obstacles.  As you run and mange these, you gain a new perspective. With every hill you run up, and then run down, you are reminded of what lies within- strength, determination, hope, and accomplishment.

I wasn’t focusing on the time, but I was hoping with all things considered, I would finish in an hour.  I finished the run in 55 minutes.  My last mile was the fastest one- at 10:24.

I went and sat in the cold creek with my kids, who had been playing in the water with their grandpa and cousin.   As I watched them play, and felt the cold water rush over my legs, I felt another feeling I often gain with running- peace.

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I’ve signed up for my first race in almost a year on Labor Day. It is 5 miles.  While I have run a 9K race before, (5.5 miles), the 5 mile distance will be a bit more challenging for me this time since I haven’t had a lot of training time to build up my mileage.  Before the mountain trail run, my goal was to finish in 50 minutes or so.  I am pretty confident I can finish around this time, and I do like to race, to see how fast I can run.

I am happy to be back racing, and am going to focus more on the run itself- the sights, the sounds, my breathing, and the fact that after all of it- I’m strong, healthy, and still running.

Categories
Cancer Cole Family & Friends Health Ryan

Surgery to Prevent Cancer

I had a laser surgery yesterday to remove the precancerous cell growth I had.  I’m very happy to be able to type this today- the surgery went great.  It was much better than I had been expecting.  The nurses, and doctors were so organized and on top of it all.  I am feeling groggy and dizzy from the anesthesia, but the pain is not nearly as bad as I had thought it might be.

The hardest moment for me was when I was in the pre-op bed, with the IV in waiting for the surgery to start. In the hospital bed like that, I felt sick.  I missed Ryan and Cole so much.  A lot of memories of surgery and cancer came back to me.  I knew this wasn’t cancer, but those “what-ifs” seem to have a way of creeping in.  I was going to be unconscious during the surgery, and that made me nervous.  I also saw my chart binder with my last name, and it reminded me of seeing that binder when I was in the hospital with my mom before she passed away.  I missed her a lot yesterday.

But my family and friends had called and texted me before the surgery, and I knew they were thinking of me.  I was able to mentally make the shift that I was not sick, this was a preventative surgery, and it would be better I was asleep during the surgery.

A day after, I hope this was the last surgery I will ever have to have.  As I wrote in my last post, I have made a few changes in my life, to work on keeping my stress down.  It takes a conscious effort, but I definitely do not want to get any more cancers, or abnormal cells that could develop into cancer.

I have received a lot of email from thyroid cancer patients and survivors.  It seems like we all have our struggles.  One person I know is still having dosage problems for Synthroid two years after the fact.  Another person  still doesn’t feel back to normal after two years as well, and is nervous about developing more cancers.

Yesterday all the nurses and doctors who looked at my chart told me I was a very healthy person.  I was a little surprised to hear them all say that.  When I asked them even though I had thyroid cancer, they said yes- from a medical perspective, thyroid cancer is treatable and curable, and they look at the overall health picture.

I wanted to write and share this, because it is too easy once you’ve had cancer, to stop viewing yourself as healthy. I like what the medical staff had said, it’s an overall health picture. One cancer, or two- a few surgeries, doesn’t make you an unhealthy person.  I am going to make that mind shift and keep all of it perspective.

Thank you to John, who took excellent care of me after the surgery last night,  my friends and family for your well wishes, and for checking in with me today.  I’m also very grateful to Ryan and Cole’s father’s family who are helping out with their care this week, so I can recover.

As I’ve written so many times, cancer does change you, and there are good parts to it and not so good parts to it.  But, the main thing is to keep on top of it, and trust your body.  It will be a fight for probably the rest of our lives, but as all cancer patients and survivors know- it is well worth it.

Categories
Cancer Family & Friends Health

Health & Stress

June 12th marked two years since I had my thyroidectomy and neck dissection to treat thyroid cancer.  I was planning to write a special blog post with references and guides for thyroid cancer patients.  When I started researching the condition, it was hard to find credible sources and information, and I thought it would be nice to have a source guide with all the valuable links to the information I have found and used over the past two years.

I still plan to write that, but it will have to wait.  On June 14th, I received the results from a biopsy.  It showed a moderate abnormal growth of cells, which I was told if left untreated, develops into cancer.  The condition is rare- my doctor said less than 1% of women ever develop this, and he didn’t even have that much information he could share with me, since his practice rarely has a patient with this. He said they don’t know what causes it, but a weakened immune system is suspected. 

It felt like déjà vu, and it was upsetting.  There wasn’t a lot of information on the Internet. But what I was able to find, was pretty much the same information my doctor had told me.  As I talked to my family and friends, the reality of what I need to do, became clear.

I had a few hours where I realized and accepted, like it or not, my immune system is weakened because of my prior cancer.  When I was recovering two years ago, I was really careful with not over doing it, resting, eliminating unnecessary stresses, and not “sweating the small stuff.”  I realized I’ve not been doing a great job of that lately.  As I discovered, when I don’t do these things, my health suffers. 

I decided to ask my doctor if he knew of any other doctors who specialize in this condition, and who were familiar with the more advanced treatment options.  He was able to refer me to specialist and I have an appointment with her next week.

After doing more research I believe I will be fine.  I think this was caught early enough and it is treatable.  I can liken it to when you find a suspicious mole and they tell you it needs to be removed because it could develop into melanoma if it is left untreated.  

Receiving news like this again- puts it in perspective.  There are very few things in life that are so important, it is worth the stress.  At times, the little things seem big.  Some of these things I can control, some of them I can’t.  It is hard to admit I can’t do it all. But trying to, and neglecting my health, isn’t an option for me anymore.    

The past few weeks, I’ve reevaluated ways I can cut down on my stress levels, and started working on building up my immune system. I don’t have the specialist’s diagnosis yet, but I feel like I have already started to fight this with these changes.      

I think health conditions can be a manifestation of stress.  One of the best books I’ve ever read on this topic is When the Body Says No, by Gabor Mate.  When things in your life aren’t working; your body gives you clues. What we chose to do with the clues-what we choose to change, can make all the difference.

Categories
Cancer Current Events

Cancer, Divorce, & Custody of the Kids

When I saw the headline and watched the Today Show video stating that Alaina Giordano lost custody of her children, partly because she has Stage 4 breast cancer, I felt a flood of feelings. It certainly didn’t seem right or in the best interest of her kids, for them to be taken away from their mother just because she had cancer.

Having had cancer while I was going through a divorce with custody issues, I can relate. Fortunately, at the time of the divorce trial, there were no traces of my thyroid cancer left, and my prognosis was excellent for survival. Divorce cases are hard at best, and to his credit, my ex-husband and his attorney never raised that aspect in our divorce case. However, it makes me nervous on some level for parents who are fighting for custody of their children and who may have a disease- terminal or not.

The Alaina Giordano case raises a lot of concerns.  While the case facts have not been made public, there are allegations of domestic violence, mental illness, and cheating on both sides. Ms. Giordano has admitted to cheating, while her ex-husband has not. Clearly there are other issues involved besides Ms. Giordano’s terminal cancer.

With all things considered- assuming half way between all the allegations, somewhere is the truth, or at least only the facts that Judge Nancy Gordon, could consider, there are two parents accusing each other of severe wrongdoing and behavior that could be damaging to their two children, Sofia, 11, and Bud, 5.  With a terminal cancer diagnosis for the mom, and testimony from a forensic psychologist, Dr. Helen Brantley, who Judge Gordon cited in her ruling saying, “The more contact [the children] have with the non-ill parent, the better they do. They divide their world into the cancer world and a free of cancer world. Children want a normal childhood, and it is not normal with an ill parent.”, and it seems like Ms. Giordano’s cancer was the deciding factor in this case.

On the surface, I don’t think any parent should be penalized with losing custody of their children for their health, as long as they can take care of their children, and children don’t see their parent suffering.

My kids saw me fight cancer. They knew what cancer was, they knew why I was going to the hospital. They saw me after my neck had been dissected and I was in the hospital. They saw me sick for months as I recovered. They knew why I didn’t have enough energy to be the mom to them for a while like they were used to. They knew why they couldn’t be around me for a week- because I was getting a pill that would kill the cancer in my body, but it put out energy that was dangerous for them to be around as kids. They saw me at my weakest- on days I could barely care for them and had to have family help me. They also saw me recover, gain my strength back, and beat it. When I told them in March, my cancer was gone for good, they lit up, because they understand, because I never hid it from them. When I was diagnosed with cancer, and while I fought the hard part of it they were five and a half and three. I obviously didn’t go into all the details with them, but they knew what they needed to know for their age.

I’ve written a lot about how the main motivation for me during this time was my kids. I could not imagine how it would have been if I had not been allowed to see them or my parenting time had been reduced, or they were ordered to be moved away from me to another city. It would be even more devastating if the only reason for this was because it would be better for them not to be around the parent of the “cancer world.” I am not a forensic psychologist, but I am a mother and Dr. Brantley’s statement seems ludicrous. Of course children want a normal childhood- don’t we all? But life happens, and sometimes parents get sick. Sometimes they have cancer, sometimes other diseases, and sometimes they die. But this doesn’t necessarily mean that kids want to reduce contact with their sick or dying parent. Most kids who can understand that someday Mom or Dad may die from cancer, I would imagine, would want to spend as much time as possible with the parent. It’s human nature. Kids aren’t any different.

I’m not saying kids should be there to the bitter end, or witness health conditions beyond what they can handle, but I was always keenly aware of how my health could be affecting my boys. I called my ex-husband one evening and told him I was not well enough to take care of the kids for a few days, and it wasn’t good for them to see me that sick. I didn’t try to keep my kids with me, and my ex-husband and his family made arrangements for care for the boys for a few days during this time. At other times, I stayed with my dad and step-mom so they could help and provide support. I have a hard time imagining any parent fighting a disease would think or do otherwise if their health started to jeopardize their children’s outlooks or feelings.

After thinking, discussing, and reading more about this case, and having gone through the divorce procedure in Colorado, with a judge at a trial to decide many issues in my divorce, I have a hard time believing the sole reason for the judge’s decision was only because of cancer. It appears it did come into play, but we frankly do not have all the facts. In my experience, (and the judge in my case was a woman) courts do not want to separate kids and parents. They are not looking to split up mothers and children, and fathers and children. But when there are circumstances that warrant it, they make their decisions with the information they have, and sadly sometimes, those decisions can only be based on information that is proven (such as a police report in the case of a domestic violence allegation.) If there is no evidence, then the judge can’t consider it.

I have not had to face the prognosis that my cancer was terminal. I don’t attempt to explain how that would feel as a mother with two children. Not knowing if you have a year, or six months, or ten years, would be agonizing. I did think about dying though, and what would happen to my children. If my children’s father lived in another state, and was not planning on moving back to the state where I lived, the reality is, when I died, they would be in the care of their father. For me personally, I would feel more at peace and feel like I did everything I could for my children if I helped them as much as I could with that transition with whatever time I had left. Cancer isn’t fair, and divorce isn’t fair. The toll it can take on children is the most unfair part of it all.

This case is definitely complicated, yielding a lot of mixed feelings for parents going through a divorce with custody issues, who have or have had less than ideal health. I hope the parties involved can come to some sort of compromise that will keep the children’s need for their mother in their lives, while she is doing well and fighting cancer, while also being realistic and planning for the future. Cancer or not, divorce or not, the children need to come first.