Health | Mesothelioma | Cancer » Oncologist

buzzing brain

admin — Thu, 22 Jul 2010 22:28:20 +0000

I had a brain MRI today. I’d never had one before and it’s a pretty weird experience.

I’m not worried about anything in particular. I just thought it would be a good idea, after hearing an oncologist speak at the Conference For Young Women Affected By Breast Cancer that I attended last February.

It wasn’t nearly as bad as I’d feared. It turns out that I am not at all claustrophobic (and I was so relieved that the technician managed to access a vein for the contrast injection on the first try that nothing after that fazed me at all).

But boy, was it loud. And my neck is still stiff from the brace they used to hold my head steady. It’s been hours since I left the hospital and I feel like I am still vibrating. It felt like a jackhammer being used right beside my head. My teeth were chattering from the vibration.

And I am exhausted (although that my be from waking up every forty-five minutes again to make sure that I didn’t oversleep).

I’m not going to worry too much about the results (although I may change my mind about that in the next few days).

My CT results from last week were good (still no tumours in sight).

And besides, there were several women at the young women’s conference who had recently had surgery for brain metastasis. Every month seems to bring more options for the treatment of cancer.

And it’s nice outside.

I am either going to take a nap now or go pick up dog poo in the back yard.

And then I’ll go for a walk.

the waiting game

admin — Thu, 22 Jul 2010 13:01:07 +0000

I am waiting for results from yesterday’s CT scan. My oncologist said that I should call him for results after five days, so I am going to start calling on Friday (it’s only four days post-test but what have I got to lose by calling?).

I did have bloodwork done yesterday and was very relieved to see that all my liver functions are well within the range of normal. I actually startled the nurse who was hooking me up for chemo by giving a little yelp of pleasure.

It is still possible to have tumours on the liver (or nearby) and have normal liver functions. However, abnormally high liver functions can be a sign of a problem.

And I will embrace every indication that all is well.

I have a new post up (I wrote it on Monday) at MyBreastCancerNetwork.Com. It’s about how hard it is to play the waiting game:

“I have no real reason to expect anything but good results this time, yet I can’t escape the feeling that something is wrong. My digestion feels a little off and I can’t decide if the pain in my side is a phantom one.

The truth is, I am scared. I am trying to reassure myself with the fact that I have been feeling pretty good, that I have been biking and running But I was diagnosed with breast cancer when I was feeling the healthiest and most fit that I had in years. And I was diagnosed with liver mets three weeks after I returned to work, at a time when I was feeling strong, energetic and (so I thought) on the road to reclaiming my life from cancer.

I have been fairly racked with anxiety these last few days and yet today I feel calmer. Perhaps I have had the time to come to terms with the fact that I have no choice but to meet whatever challenge lies ahead. Perhaps it has helped to keep myself really busy. Or maybe I am in denial.”

I also wrote in the same post about how I how I cope with the anxiety. I was a little crazy on the week end but there are definitely things that help, when I can remind myself to do them:

“My advice to women awaiting test results or doctor’s appointments remains the same.

Try not to torture yourself with worst case scenarios.

Go out and play (I went to the National Art Gallery with my family yesterday).

Get together with friends (I had a great time at last night’s book club meeting).

Get some exercise (I am going running with my son after school today).

Write it all down (I procrastinated over doing this but I can’t tell you how much it helped.”

Cross-posted to Mothers With Cancer.

More About Purpose

admin — Tue, 20 Jul 2010 11:12:58 +0000

I tried to leave the cancer world, at least as much as I could while still seeing an oncologist regularly and being tested for cancer every three months. I tried not to focus on cancer, to go back to my “normal” life, but I learned the hard truth of surviving cancer, we never really go back to our “normal” before-cancer lives.

I’d also had to explore and redefine my faith. I never believed there could be no God. I have a mind that loves science. I can’t believe there is not an intelligent designer of life as we know it. A scientist calculated the odds of life being the result of random chance at 1 in 10 to the 40,000 power…about the odds of “having a tornado tear through a junkyard and form a Boeing 747 jetliner” (Sir Fred Hoyle speaking at the British Academy of Science). I loved the book The Science of God, written by a Jewish physicist with a PhD from MIT.

I was raised Christian, but still explored and compared other religions, I was never good at doing something just because I was told to do it. In the end, many years ago, I became a Christian. My earlier experiences in churches made me uncomfortable, so for many years I did not attend a church. My best place to worship still is not in a church, but amid beautiful trees and wildflowers and lakes, where I am surrounded by the works of my intelligent designer. That’s the first place I went when I received my cancer diagnosis, the place I go before every CT scan, the place I go when I am afraid or feel alone.

Faith puts a twist on a cancer diagnosis, though. Cancer doesn’t mean a potential ending to your life, your life is eternal. You never die, just change locations. And we will all someday cross the death threshold, so we don’t really “beat the odds” by surviving, the odds are a terminal fate for all of us. I wanted only two things after my cancer diagnosis. To raise my kids to adulthood, to not abandon them, and to make whatever time was left in my life meaningful. I wanted my life to make a difference. That’s all. No more retirement plans. No more plans to live to old age.

I recently read a book by Mark Batterson that I loved. He put into words what I think now;

“I am not convinced that the date of your death is the date on your gravestone. Most people die long before that date. We start dying when we have nothing to live for. And we don’t really start living until we find something worth dying for” (Wild Goose Chase).

Lots of people live to an old age long after they’ve died inside. In another book of Batterson’s he cites research presented that indicates “the greatest human fear is having lived a meaningless life”. I believe that’s true.

A few years after my diagnosis, I came into contact with others diagnosed with appendix cancer who were told, as I was, that there was not available treatment. They were told they were terminally ill. People who wanted to live long enough to raise their kids, like I did. People who didn’t know how to find and read medical literature. I felt it was wrong of me, as a medical professional who could locate, read and understand medical literature and who had read almost all of the medical information published about appendix cancer, not to share what I knew. I was a nurse, I had made a career of being the go-between in the medical community. I had a career educating patients about their disease and translating medical information into layman’s terms for the general public. As a medical professional and one of the afflicted, I was perfect for the job of educating and supporting newly diagnosed appendix cancer patients.

I didn’t know how to communicate with all of those diagnosed with a rare cancer who were spread out all over the world. The Internet seemed the only way. I hated the idea of putting my personal information on the Internet. I never gave even friends medical information or direction outside of my work environment. I never let strangers know my medical credentials. I’d always made a point to keep my name and photos off of the Internet. I wasn’t very Internet savvy and had no clue how to design a web site.

But I signed up to take an 8 hour evening class in beginning web site design at a local high school. I couldn’t afford the software for the class, so for the first time ever tried out EBay and found it for $35 (my first financial dealing online with a stranger, something else I’d sworn not to do).

The rest of my life changed forever with that decision.

well, hello there

admin — Mon, 19 Jul 2010 01:01:42 +0000

Yikes!

It’s been a while, hasn’t it?

I seem to have lost my blogging mojo. I remember a while back when Average Jane wrote that her blogging had been derailed (my word, not hers) by Twitter and Facebook. I get that now.

Whenever I have a quick observation or a link to share, I can gratify myself instantly with Twitter (I’m lauriek, by the way). And while each tweet does go to Facebook and the sidebar of Not Just About Cancer (on the right – see it there?), it hasn’t done much for my blogging.

I don’t want to give up the blog though, so I’ll try and re-commit to posting regularly (how’s that for hedging my bets?).

On the cancer front, there is a little news. I loved having a break in April. That month also brought another clean CT scan. My oncologist continues to be happy with how things are going (or not going, really).

We talked a bit more with about the weirdness of being in ongoing treatment (with side effects that are cumulative, both physically and emotionally). He talked frankly (one of the things that I love about him) about how, in my case, he really has no idea what to do.

We don’t know what would happen if I were to take a longer break from treatment or stop it altogether.

“You’re a riddle, wrapped in a mystery, inside an enigma,” he said, quoting Churchill.

He said that, theoretically, we could start our own clinical trial, where half the women stop treatment for three months and half continue as I’ve been doing.

“But then what do you say to the women in the first group, if the cancer comes back? ‘Oops?’ ‘Im sorry?’ ” (I’m convinced that the man lies awake at night wondering about these things. His compassion is another thing I love about him).

He has a way of putting things into perspective for me.

I had planned on asking for another break in six months but he surprised me by suggesting I take a break in August (hooray!)

He also said that, some time in the future, he’s not sure exactly when, he’s going to feel ready for me to take a longer break. Meanwhile, I’ll have fewer appointments with him and, unless I’m worried about something, I can call them in (another hooray!).

I am very pleased about all of this but I admit to also feeling a little blue. I’m still dealing with some of the “grey area” fallout. It’s really hard to articulate (and I feel guilty for even complaining. Guilt would be a good subject for a whole other post).

Life is a funny thing. And it’s really hard to plan even five years ahead, because you never know what’s going to happen. I’m trying right now to return my focus to living in the moment, accepting what is and reminding myself to notice the good things.

Outcomes and Expectations

admin — Sat, 17 Jul 2010 02:28:33 +0000

While I don’t believe “thinking positive” is vital to a good cancer outcome, I do believe that negative assumptions affect cancer treatment outcomes.

I know of many who assume prior to cancer therapy that their normal lives will be over while on chemo…they will feel ill, be nauseated, will vomit often, not be able to eat and will be fatigued while on chemo. And bald.

Many also assume their recovery from surgery will be extensive, they will be out of commission for months following surgical intervention. They assume they will have side effects from radiation therapy.

I wonder sometimes if those assumptions become a self-fulfilling prophecy?

I personally had a very major cancer surgery. Prior to surgery I was told I would be in ICU post-op and would be hospitalized for at least 12 days. But I didn’t go to ICU post-op as I did well after surgery. I was discharged in 6 days, not 12. I walked 3 miles 8 days after my surgery. I was driving my car in 2 weeks and back to my normal life in three weeks.

I started chemotherapy with no pre-conceived notions of my life being altered, and it wasn’t. I was nauseated only once during my 7 months of chemotherapy, ate well, gained weight and never vomited. I didn’t lose my hair. I drove myself to and from chemo treatments and ran errands on my way home from chemo. I did athletic training while on chemo. Six months after I completed chemo I rode my bicycle 100 miles in one day (I trained for that event while on chemo). I lived a normal life…the few chemo side effects I had were cured with medication once I brought them to the attention of my oncologist. I felt a bit washed out on chemo days, but hey, I’d had days where I felt a bit washed out prior to chemo. They’ve come a long way with chemo, nowadays drugs are given prior to chemo treatments to prevent side-effects.

I had a friend with my same cancer who was in her 70s. She was also discharged from the hospital following her extensive surgery in a week. She was soon after surgery kayaking and hiking and doing the things she loved. My 79 year old aunt is experiencing a breast cancer recurrence, but is living a normal and full life while on chemo, following 39 uneventful radiation treatments.

I know of others who after the same surgery I had spend months recovering. Who don’t resume their lives and interests for the better part of a year.

And I wonder sometimes if expectations play a part in outcomes. If we expect to be ill and disabled, maybe we will be. If we expect prolonged recovery, maybe it will become our reality. It’s not so much that we need to think positive when we enter cancer treatment, maybe it’s more that we go into it open-minded? Maybe our attitude in part determines whether we will be victims or victors?

This Time’s a Charm Book Stop #10

admin — Mon, 12 Jul 2010 23:05:51 +0000

My blog today is the 10th stop for the blog book tour of This Time’s a Charm: Lessons of a Four Time Cancer Survivor, written by Don Wilhelm. The book chronicles Don’s battle with lymphoma…a long and difficult journey over several years. His journey has included several remissions that he says in the end were “intermissions” as his cancer has recurred multiple times. At the time his book was published, he had survived 4 recurrences. He is now currently out of remission again and facing his 5th battle with lymphoma.

I’ve read several books written by cancer survivors, and Don’s book was one of the better ones. It was personal, inspiring and easy to read; I finished it in one day. What I enjoy about reading books written by other survivors is that they validate our own experience, they make us feel less alone, more understood. Don’s book does all of those things.

In This Time’s a Charm we travel with Don through the shock of his diagnosis, his search for an oncologist willing to be a team player, his research into his disease, his experiences with testing, chemotherapy, radiation and even a stem cell transplant as he’s battled multiple recurrences…Don’s been through it all.

Don has faced what all of us fear, a recurrence, multiple times. At one point he said that “not 10 seconds went by any day that I didn’t think about it and worry that my cancer was coming back”. Much of his book chronicles the emotional impact cancer has had on his life, and his learning to live with the uncertainty we all face. He talks about spending the summer after his transplant living what many of us do at some point, a “short term life”. His was a phase of “gluttony, irresponsibility and disregard for the future”. But he grows through this phase and many others to acheive a full and rich life in spite of and often with cancer.

Don’s story is the courageous and inspiring story of a man living for years through a life interrupted frequently by cancer recurrences…a man who chose to explore, to grow and most of all to LIVE. Definitely recommended reading for anyone struggling with a cancer diagnosis.

Grieving the loss of “Normal”

admin — Mon, 12 Jul 2010 19:50:11 +0000

In 1969 Elizabeth Kubler-Ross published her classic book, “On Death and Dying”. I was required to read it as a class assignment in nursing school. The book outlined the five stages of grief and loss of someone who is dying. In later years, these stages of grief and loss became known to be associated with other types of loss.

I talk to so many who tell me that the day of their cancer diagnosis was the day their “normal” life ended. I’ve recognized these same stages as we grieve the loss of our “normal” lives after a cancer diagnosis. I think many of us have gone through these stages as we’ve relinquished our before-cancer normal lives. I know I did.

• Denial and isolation: “This is not happening to me.” We feel detached, we can’t assimilate the reality that we are now cancer patients. It was so unreal the first time I sat in an oncologist’s waiting room knowing that though I felt great, I was now a “cancer patient”. I was a cancer patient just like the bald person across the room. Just like the very thin and sick-looking person across the room. I was one of them, a cancer patient.

• Anger: “How dare God do this to me.” I never felt “Why me?”, but I was angry sometimes that people I knew who abused their bodies, were abusive to other people and who were just plain mean lived to old age without having any severe illness threaten their lives. And I knew good, faithful and God-honoring people who died of cancer and abandoned their children. I saw kids with cancer. I was angry at the unfairness of it all, the injustice.

• Bargaining: I’ll eat right, I’ll do chemotherapy, I’ll do surgery, I’ll quit smoking, I’ll exercise…just let me live long enough to raise my kids. I just want to see them graduate from high school.

•Depression: I am so sad, I feel horrible at the pain and worry I am causing those I love, I’m afraid of the future, I’m afraid of tomorrow. I’m so sad.

•Acceptance: I’m here now, at acceptance, but it was a very long and hard road. And I guess since I’ve almost achieved what I’d “bargained” for, maybe it’s easier for me than for others. I’ve been in the cancer community for over 6 years now. It can be a place of brutal reality, of fear, of sadness, of anxiety. But I truly accept now that there is a purpose for all things, even the bad things. I accept that every day is a gift and that none of us are promised tomorrow. I accept that we need to make today count. I accept that God’s answer is “no” to many prayers. I accept that there is much I don’t and can’t know from my perspective in this here and now.

But I feel with certainty that this here and now is not all that there is. I know there is much more beyond this life. I accept my life as tentative in this realm, but I know this is not the only realm. I accept all of the grief and goodness this life has to offer, but I anticipate another reality after this one where we are whole, where we can understand, where everything makes sense, where there is no grief. And now I very much look forward to that reality. For me that is the greater hope…greater than the hope of surviving my cancer.

some good news for a change

admin — Mon, 12 Jul 2010 09:26:13 +0000

we have a rough couple of days ahead of us but it ends well. hubby has a bone marrow aspirate yesterday, surgery to have his i.v. catheter removed today, and his final (hopefully, final for his whole life) lumbar puncture and spinal tap wednesday morning. his new immune system got a bit of a test when we both got a cold last week, but he is healing quite nicely on his own (not even an otc decongestant!!) it was a little bit nerve-racking but great to see his immune system react like it should without any outside help.

wednesday afternoon, WE ARE DISCHARGED and move back to waldorf. from here on out, we’ll only have to go to johns hopkins once a month, and hubby of course has weekly check-ins with his local oncologist, but it will be an easy schedule compared to what we’ve been doing.

thursday morning, if hubby feels up to it, we are headed to north carolina for thanksgiving. (if not, i stocked up on our own mini-thanksgiving dinner with a turkey breast and some fixins, although this will be my first time roasting meat of any kind, so we’ll see how it goes).

next week, i go back to work full-time. i’m looking forward to getting back to a regular routine but it is going to be a BIG mental adjustment to go back. i just have this idea that going from this intensely medical environment back to the banalities of everyday life will take a large mental leap. hopefully, i will not fall into the crevasse.

some days are blue, some days are indulgent

admin — Fri, 09 Jul 2010 14:00:07 +0000

I have been feeling kind of blue these last few days.

I’m always relieved after I get good scan results but a feeling of let-down seems to follow almost every time and I find myself, once again, channelling Peggy Lee and asking “Is that all there is?”

I just finished the latest round of edits on my book (coming out this spring with Women’s Press!) and I have been left wondering, ‘so, what’s next?’

I haven’t looked at the outline for my novel since I submitted it for my writing course on December 31st. The course is over and I am feeling kind of daunted. I’ve been asking myself, “Can I do this?” and “What purpose would it serve?”

This morning, I had an appointment with my wonderful oncologist who confirmed my CT results. He also referred to my “normal” life.

I told him that I have been feeling kind of “ground down” by the emotional wear and tear of treatment, as much as the buildup of toxins.

He gently reminded me that I need to think of myself as having a chronic illness, “like diabetes”, that needs to be managed but that doesn’t stop me from living my life.

I told him that I know how lucky I am and that I am very grateful not to be dead (at which point he rolled his eyes) and that I’ve been doing other things to keep my life full and interesting (like writing) but that I miss the more fast-paced, structured work environment.

My oncologist was sympathetic but said that we are working at keeping treatment “as innocuous as possible.” I only go for treatment every four weeks and I phone in for every other appointment with him. And he’s right.

The truth is that I couldn’t go back to the kind of long hours that I worked before cancer. Even if I could miss three or four days on treatment weeks, my body couldn’t tolerate the stress or long hours. And I am not sure that I really want that back or if I am just missing the sense of identity that I got from my job.

My oncologist suggested that I skip a cycle over the summer and I’ll do that. I’ll also keep working at doing the things that make me happy.

I have the chance to work at making art (and writing is art). I have to embrace this rare privilege, not feel guilty about it or self-censuring and just see what happens.

Some days are easier than others.

I asked my oncologist whether there were any restrictions on my activities. He said, “No.” He added that there were also “No restrictions on lifestyle” – this is the same oncologist who suggested that dope would help me to cope with the side effects of chemo (it did!) and who routinely suggests I go out for a drink to celebrate any kind of news (wine for good news, scotch for bad) – “The liver is healthy. So you can party.”

To which my spouse replied, “As if she needs any encouragement.”

However, given the fact that I have gained 30 pounds since I was first diagnosed (10 of those in the last two months), I think I’ll be living a more ascetic existence for a while.

Cross-posted to Mothers With Cancer.

Qld cancer patient welcomes drug subsidy

admin — Fri, 19 Feb 2010 21:49:12 +0000

A Maryborough cancer sufferer has welcomed the placing of a chemotherapy drug onto the Pharmaceutical Benefits Scheme (PBS) this week.

In 1995, 65-year-old Gary Morse was diagnosed with an incurable lung cancer.

He says the chemotherapy and asbestos cancer drug, Alimta, helped him greatly last year.

But he say it would have cost him about $20,000 if his oncologist had not persuaded a private health insurer to pay the cost.

“We have private insurance and he [the oncologist] got in contact with them and got them to agree to pay for the first three treatments and the results were great,” he said.

“Then he talked them into paying for the next one and of course now it’s come onto the free list, which is better still.

“If we hadn’t had private insurance we would have had to take it out of our superannuation retirement fund.

“I know of another one person who’s on it, and it’s increased his life span, and of course it’s also going to increase mine too.

“This year 22 of our family were all together for Christmas, the first time ever, and I thought it was going to be the ‘last supper’, actually, until this new drug come on the scene.

“Now we can look forward to the future. I’m really pleased with it.”

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Health | Mesothelioma | Cancer » Oncologist

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