I mentioned in Friday’s post that I had discovered a whole new, heart-rending category of cancer blogs – those devoted to children with neuroblastoma, the most common extracranial solid cancer in childhood and the most common cancer in infancy, with an annual incidence of about 650 new cases per year in the US. Many children do not survive this disease.  Today I am proud to present two posts about individuals that have.  Both contain good, insightful writing – my primary criteria for inclusion in the weekly Guest Post feature.

The first selection is by Connie Powell,  mother of Miss Madelyn, who keeps up communication at CaringBridge.org – missmadelyn.  The post speaks for itself.

Miss Madelyn

Dates that change our lives- Dates we never forget- Today is one of them. Nine years ago today- the day Madelyn was diagnosed with cancer. As I look back on May 9, 2000- that day brings back so many painful and sad memories. It started out as a “normal” day with Madelyn being the very sick baby she was. Bob took Allie to daycare and went to work. I took Madelyn to our clinic for her ultrasound of her liver. I had called to get a follow up appt with her primary doctor following her ultrasound, so he could look at all of the mosquito bite like spots that kept appearing on her body- and then disappearing. During the ultrasound, I knew something was definitely wrong. The tech left the room and returned with other techs, to show them what he had seen on the screen. I questioned them if they could see her liver was enlarged. They looked at me with the sympathy look and said yes. Another tech had stuck their head in the door and told me I needed to go upstairs to see Madelyn’s doctor before leaving.

I knew I had an appt, however- they didn’t- so I knew at that point something else was discovered during the ultrasound. Never in a million years did I suspect cancer. We were escorted into an exam room where I held Madelyn as we waited to her doctor. I remember when he walked into the room, pulled his chair right in front of us. He gently started rubbing rubbing Madelyn’s head and asked me what was going on with her. I started explaining Madelyn’s bug like spots- as I was telling him, I knew he wasn’t listening to a word I was saying. I saw the sadness in his eyes- the tears were filling his eyes, and I could tell something was definitely wrong. I stopped in middle of my sentence- and said, “Something is wrong with her.” That is when he said, “Madelyn is very sick. She has cancer.”

In a blink of an eye, the normal life I thought we had lived suddenly was changed. It started out as a normal day…I remember the sunshine and the happiness in our house that morning….and ended with us being in Children’s Hospital- so cold and scared. I remember stopping by the daycare center- pulling Allie into the car with us, trying to explain to a five year old that her sister was sick and we had to go to the hospital. She was so innocent. She saw Madelyn throwing up so many times a day- that was her normal. She had gone with us to previous doctor appts and thought we were going to do the same with her this time. As we said goodbye to her, both Bob and I cried.

I remember all the phone calls we made that day- changing their lives to. I remember hearing the pain in their voices- the fear and sadness they felt. It is like my brain has recorded every minute of that day- and all it takes is for me to hit replay- and I can relive it over in my mind and feel the raw emotions of that day. We had never heard of Neuroblastoma prior to that day. I had her Oncologist repeat that scary word and even spell it for me, as I wrote it on a napkin. Late in the evening, as Madelyn was sleeping in her metal hospital crib, both Bob and I tried to get some sleep in her hospital room- knowing May 9th was a day we would never forget.

Yes, dates that change our lives. Even though it’s been nine years, and Madelyn is doing so wonderful- I have learned to embrace the events of the day. Even though the day is painful to relive, it allows me to truly remember all I have to be thankful for. All the gifts and the lessons we gained, the people who have touched our lives, the friends we have met along this journey – yes, I feel so blessed. Today- I will hug Madelyn a few more times- hold her a little tighter- touch her a little more- smoother her in love a little more- make her laugh a little louder- and make her smile last all day long.

from: CaringBridge.org – missmadelyn

My second selection is written by a young man, now in his twenties, who was diagnosed with NB at the age of six in 1991.  He suffered two relapses, the last in 2006.  Erik Ludwinski is alive, volunteers working with kids with cancer, and writes with perception at CaringBridge.org – erikludwinski

Cancer is so much more than a medical case. It’s a valuable lesson in human behavior under stress. Psychologists have probably examined and analyzed it’s effects in all kinds of situations, recorded typical behavior, and teach it in psychology classes–that I’ve managed to avoid so far–but the reason I feel I don’t need to be taught about behavior under stress, is that I can’t really get away from it. I live in a cancer environment whether I like it or not, so I naturally learned about it from my own experiences.

By now, I think I’ve gotten a pretty good handle on it. I remember bursting into tears with my mom on the ride home from Fargo, after hearing that I relapsed for the first time. Now, four years later when my doctor tells me the cancer is progressing into my head and around my hip, I know how to take the information analytically instead of emotionally. I know when to consider my situation carefully and when it’s best to distract myself with other things. After all, it would be unhealthy to keep myself in a constant state of worrying.

Better yet, I’ve also used my experiences to relate to other patients much more effectively. I can teach them my own methods of dealing with pain and stress. While encouragement from any source is greatly appreciated, there’s something special about someone who can honestly say, “I know how you feel”. This places me in a great opportunity to help others… at least those in similar situations.

By similar situations, I mean cancer patients. Not parents, not siblings, not friends or relatives of people with cancer, but individuals undergoing treatment for cancer. I’ve experienced cancer as a child and as an adult. I know what chemo tastes like, I know what radiation smells like, I know what surgery feels like… but at one point I realized, that was it. I still have no idea what it’s like to see my older brother sick and in pain, too young to understand what is wrong. I have no idea what it must feel like to hold my child ravaged by a disease I have no control over. There’s no book that could describe it either.

I’ve been dealing with cancer for the past four years… but so has my Mom. I have no idea how she must feel each time my doctor tells us bad news. God has given me amazing support through her and thousands of others. I’m secure, but for every person who calls me an inspiration, I hope they understand I would never be as strong without her. It’s not my fault I got cancer and put her through this, but it is my fault for every moment I don’t remind her of how much I appreciate her.

If you have a moment, please remind her how valuable she is and pray God gives her peace through this too.

from: CaringBridge.org – erikludwinski

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Sunday in Beaufort

“Cancer Blog Links” is easily the most popular feature of this blog, typically getting 2-3 times more traffic than any other page.  I was wondering why this is true.  First, I think, it is developing into a remarkable and unique resource.  It is possibly the largest resource of its type on the web.  Part of its popularity must be the instinct of those with cancer, or their families, to make contact, even the electronic kind, with someone else who is experiencing the same cataclysmic events.

Cancer blogs usually have a rawness, an emotional openness that is hard to find in a conversation or other typical social situation.  We sense that the experiences revealed in cancer blogs are happening to real people, people just like us, in real time and in real places.  And despite the immediacy of the event there is the safety, sitting behind our computer monitors in the corner of a kitchen or study, the insularity of distance.  We can choose or not choose to interact, to share our pain.

Fortunately for many of us there seem to be enough fellow travelers out there that dare to share, to express empathy and support.  It is, after all, comforting to know that there are others out there that truly know what we are going through.  To know that we are not alone in our enduring. The intention of family and friends to provide sympathy and understanding is most always well-meaning and heartily appreciated.  Still we may feel alone because we sense that that the precise nature of what we are going through can only be felt by another suffering the same fate.

Many bloggers, at least, begin with the need to let others know, as much as is possible, the pain, despair, joy, gratitude, relief, and weariness that is their new normal, their new daily life.  But then later there is that other impulse – the suspicion that, in writing a blog dedicated to our personal fight with cancer, we can make something of value to others.  We can create something to bolster and reinforce the struggle of others with our disease.  And finally there can be something said about the sense of community that developes through all this interaction of friends, family, and strangers.  The strength of numbers.  When you are feeling down, others might lift you up.  And when those others are down, you can return the favor.

Analyzing the blog list is still a future project.  As I suggested before, the blog community probably does not accurately represent the broader cancer community. By far most of the bloggers on the list are female.  It may be that many men with cancer try to continue working through their treatment. But more probably men are not so disposed to sharing widely their deeper fears and hurts with strangers.  It would be interesting to compare the wider world of blogs in terms of the sex of the blogger.  I suspect the disparity would not be so great.

Breast cancer survivors compose the largest single group of bloggers on the list.  Certainly the incidence of breast cancer is significant but not so much as the ratio here suggests.  I think that the answer here lies in the tremendous political and social consciousness that the breast cancer movement has nurtured over the past two decades.

The high incidence of Hodgkin’s lymphoma bloggers lies, as I have suggested before, in the relative youth of that population and their familiarity and comfort with using electronics for social networking.  Also responsible is the rise, on a smaller scale, with the movement to focus on cancer as not just a disease of older adults, the “I’m too young for this” consciousness.

The paucity of other cancer blog categories is harder to explain.  People with extremely aggressive cancers such as pancreatic might be just overwhelmed by the rush of diagnosis, treatment, and short prognosis.  I have found small pockets of rare cancers that seem to find each other: cancers of the appendix, adenoid cystic carcinoma, sarcomas.  The small number of lung cancer bloggers, however, remains somewhat puzzling.

Part of the disparity lies perhaps in my success at finding their blogs.  As my search abilities improve, I hope that the list will begin to look more balanced.  I do rely on you readers to steer me in the direction of more and more cancer blogs though there does seem to be a reluctance to suggest the names of other blogs.  I slowly pore through my list of blogs and, in turn, the treasures that other blogrolls reveal.

I have very loose criteria for including blogs on them list.  I like for them to be current but again that is relative.  Some bloggers take a break sometimes, not posting for months at a time.  If they have posted in the past six months I will probably still include them.  If the blogger has not posted in a year, there is the chance that they have died and I usually don’t include them.  If the more recent posts are about the funeral so that the situation is obvious, I may go ahead and add them to the list.  This is especially true if that particular cancer is not well represented.  I know people are searching for information, for experiences with ‘lesser’ cancers.

I started the “Widows/widowers” category with even looser criteria, knowing that some will find themselves in this situation at some point and will be looking for answers and empathy.

The list is getting a little unwieldy and requires a lot of scrolling.  I am studying my HTML code in order to figure out how to convert the list so that the top of the page will contain a list of hot-linked categories; i.e. clicking on “Thyroid cancer” will take you immediately to the bottom of the list where thyroid cancer blogs are located without the need to scroll.  Some cancers can be found in the “Uncommon cancers” category until there are enough of one cancer to create a separate category (as I did with “Sarcomas”).

Cancer Blog Links is a project that I am committed to improving.  As always your suggestions and comments are most welcome.  I am looking forward to our Book Club discussion tomorrow.  See you then and take care, Dennis

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Alone and scared

Journal – December 2001

It is now time to write about that necessary rite of passage – the first stay in a hospital.  I thought it would be a breeze.  Hospitals are a second home for me.  I have spent a good part of the past twenty years in hospitals.  And I had seen my own patients do very well with Rituxan, another monoclonal antibody used for lymphomas.  But the hospitalization and my treatment were harder for me than I would have imagined. I understand more than ever the desire of some of my own patients to go home and to be a person again.

So on Tuesday, just one week before Christmas 2001, I entered the hospital.  Please recall the small circus of confusion when I tried to get registered at the hospital for my biopsy. This time we were asked by my doctor to report to the hospital at 7:30 AM.  Tish drops me off at the door while she parks in the distant garage.  I approach the same information desk to find the same receptionist who consults the same pile of clipboard lists with, of course, the same result – no “Dennis Pyritz”.  She begins making her phone calls.  I am still standing at the desk when Tish comes in from parking the car.  Tish has even less patience than I do in such matters.  Predictably we are eventually steered by to registration.  They tell me my room number and assure me that I am on the oncology unit (I am leaving nothing to chance).
We arrive on the seventh floor and follow the signs indicating my room number.  The nurses at the desk are friendly but admit cheerfully that they had no idea that they were getting an admission.  My nurse, Debbie, seems to be charge nurse for the shift.  My room is a nice size for a hospital, private as befits a person with a cancer diagnosis, and has a great view of the interstate highway curving around to reveal the university medical center beyond.

My oncologist shows up shortly.  We briefly discuss my weekend and he examines me.  Then he says that he misspoke regarding the CamPath protocol.  It requires treatment three days a week, not once.  I had already begun to wonder about this after reading the CamPath protocol on the Berlex website and talking with Monica, my pharm D.  This small fact will greatly impact the tenor of my life for the next three months, impact it more in fact than I, a virgin cancer patient, can presently imagine.
With prescience he tells Tish “Your husband is much sicker than he looks right now.  And after the treatment he will look much sicker than he actually is.”

I quickly settle in, electing to wear oncology nursing t-shirts and hospital pajama bottoms instead of the more traditional, open-in-the-back gown.  My vitals are taken. I try to learn the staff’s names.  I let Debbie know that I am an oncology nurse.  I ask her what she knows about my disease and if she has ever given CamPath.  I am not surprised that she knows little about either. I am prepared for this.  I have brought along my own purple dry-erase marker.  And sure enough there is a large white marking board in my room.  I erase and move my vitals signs to an upper corner.  I then fill the board with an outline about CLL, T-cell versus B-cell disease, the role of monoclonal antibodies, the major side effects of CamPath, with a few more trivial but interesting facts thrown in, such as the fact that CamPath is manufactured in Germany with recombinant DNA technology utilizing the ovaries of Chinese hamsters.

These efforts to educate my caregivers serve their intended purpose but also, as Debbie admits, tend to intimidate them.  I vow to try to be more low key, though not, as you will read, always successfully.  Blood is drawn and the wait begins.   Doctor’s orders need to be processed, the pharmacy notified, the unit pharmacist needs to check my height and weight (although dosing with CamPath does not vary with body surface as is true of traditional chemotherapy).  We all know that my doctor wants the CamPath started as soon as possible.  Somehow physicians forget what nurses know – that ironically hospitals can be among the slower, more ponderous of institutions.

So we wait once more.  After I had presented my clinical persona to everyone, dark fears return in the quiet of the room.  I am just staring out the window at the highway.  Tish asks me what I am thinking.  I reply that my mind is just wandering.  She moves to the bed, sensing that my musing is dark.  She tells me that I need to be able to talk to her.  When she asks what I fear most, tears come immediately to my eyes and I reply “Dying too soon.”  Tish tells me that she knew that is what I was feeling.  She said that she was afraid too.  I suddenly feel relieved.  I have been trying to protect her, hiding from her information about my prognosis.  During our diagnosis session I had tried to speak obliquely about prognosis. But the graveness of this illness had not escaped Tish.  We talked for a while about struggling with this awareness.  Some light had come to my personal darkness.

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Me and the girls

Over the weekend I discovered a treasureload of new (to me) cancer blogs.  I visited all of them and enjoyed the wonderment of other’s revealing their experiences in fighting their own illness.  If the blogs were at all active, I added them to my blogroll, Cancer Blog Links.  I was especially pleased to find some of the lesser represented cancer experiences – bone brain, thyroid, and even one pancreatic survivor.  As the blogroll grows, I am hoping that it will be a welcome resource for all those hoping to blend their blogging voice with the online cancer chorus.  So I hope you will all help me spread the news of its availability as well as continue to let me know of new voices out there.

For myself my own immature immune system is struggling somewhat to battle a summer cold that I seemed to have picked up from my granddaughters.  The cold, of course, is hardly worth mentioning in the context of what some of my fellow cancer travelers are experiencing at the moment.  But it does highlight how quickly our health can turn and how profoundly our daily experience of life can turn sour.  It is a reminder that if something as simple as a cold can make us feel so dreadful, how utterly fearful then can the arrival or return of a diagnosis of cancer be.  A reminder to of my continuing inability to deal with viral onslaughts.

I am working to add new features to my blog to make it more interesting, useful, and accessible to the online community.  I had a record turnout yesterday – 150 views.  Graphics would be an improvement.  I think a polling feature would be nice.  And I still want to initiate an online discussion of books on cancer.  Anything to make the site more participatory.  I thought that my Cancer Resources section was extensive enough to me useful.  Perhaps readers are internet savvy enough with search engines that such a list is redundant.  I am still hoping that an annotated list will be quicker and more selective than a Google search.  Please let me know what you think.  Tomorrow I’ll post another installment of my journal.

Take care, Dennis

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