Cancer Blog Links Page

What do you think of this idea?  I have been cruising the web the past couple of weeks searching for other cancer blogs.  When I discover one, I bookmark it.  So by now I have the beginnings of a nice list.  I was, of course, intending to use this list for my own benefit – keeping up with various blogs and bloggers at the touch of a keystroke.

But then it occurred to me that this might be a useful resource for others wishing to reach out, especially to others with a similar disease.  Established bloggers seem to have their own list, probably built up organically as their site developed.  But new folks might well be gratified to find a ready-made list of cancer bloggers.

So I am going to work on collating my list into distinct disease catergories.  It will be a “static” webpage design, tabbed at the top of my blog and in the right column, so that it can be easily accessed and searched.  Let me know what you think of the idea.  And if you wish to send me your blog title and URL address for inclusion, or even better a copy of your own list, that would be great and would save me a lot of searching and pasting.

Take care, Dennis

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New and Fearful Beginnings

My wife was cleaning out the closet in the study yesterday, occasionally running across old photos. She handed one to me, saying that she almost didn’t recognize the rather thin, bald person sitting there on the couch in our old house.  I studied it briefly with a mixture of wonder and relief.  It was, of course, a post-transplant pcture of me – no hair, no beard, and 20-30 pounds lighter.

My life has progressed immeasurably since those tenuous days back in 2004.  I spent most of the past two days taking care of my two small granddaughters, Sophie, three and a half, and Isabel, no quite one, while my daughter-in-law, Dorothy finishes out nursing school.   They were mere unfulfilled dreams back then.

So for anyone struggling in their chemo or radiation or rehabilitation, I offer this vision of my daring girls as an example of what blessings might lie ahead in each of our disparate futures.

The great folks at Laughing Squid hosting services in San Francisco seem to have fixed the issues with the “tabs” at the top of the blog.  So please feel free to leave comments.  Below I continue with my journal.

Journal – December 2001

I’ve read about the “psycho-social” aspects of having cancer.  I have followed the descriptions and studies for years.  I’ve lectured about it, about the shock, the disbelief, and the immobilizing fear that the word “cancer” can bring.  It was not too long ago that people we afraid to say the word, and if they said it at all, said it in a whisper.  I have been in countries where they still avoid the word and certainly avoid saying it in front of the patient.  I have talked with patients about it, talked with families, sat with them in the dark, looked out at the rain together.  But none of that adequately prepared me for the numbing reality of these two weeks.
It is Thursday morning, less than a week since I first noticed the mass.  I have it all planned out.  I will pick Tish up at the airport. We will have a quiet drive back to the house, talking about her time in Florida.  The fact that I may have cancer is not something to reveal while driving 70 mph down the interstate.  I will tell her when we get home, after she has said hello to grandma, after she has settled in.  I really thought I was doing pretty well, trying to brightly hold up my end of the conversation.  But several times she says
What’s wrong?  Is something wrong? This happens again at home as we are unpacking her bags.  Now it’s time. Okay, let’s go sit down in the study.
So we sit calmly and I tell her first about my spleen, then the CT scan, and finally the suspicion of cancer.  I had rehearsed this beforehand – the order of presentation, the phasing – in order to soften the revelation and to approach the “C” word gradually.  My voice broke several times, unlike in rehearsal (no, actually I think my voice broke in rehearsal also).  She took it quite calmly.  She did this consciously she told me later in order to give me the opportunity to be the vulnerable one.  Her time for crying would come later.
At bedtime I tried to sleep but had to resort again to the Ambien, the sleeping medication that I use when I travel across too many time zones. The next day, at mid-morning Tish left work and picked me up at 11:00.  We drove to meet my new oncologist.  Until I turned 50 and started going to Tom annually for a physical, I might go to a doctor once every three years.  This is my
fourth medical appointment this week.
The receptionist led me in to get weighed.  The scale was in the room where the nurses administered chemotherapy.  Patients occupied all six of the chairs.  Now I have given chemotherapy myself hundreds of times.  I suddenly realized that I might be occupying one of the chairs very soon.  I suddenly realized that I have neatly divided the world into people that sit in chairs like that, people defined by illness, and then the rest of the world of healthy people, people with faithfully functioning, intact bodies.  This arbitrary division is not necessarily a bad thing.  But it is one of the ways in which I have categorized the world.  And now, through no choice of my own, I am in the other half.  This realization lasted for only a few seconds, but I knew that I had changed irrevocably.
My new oncologist, Ray Markham, walked into the room. I realize that he knows quite a few of the physicians that I have worked with.  They had all done internships in oncology/hematology at the University of Rochester.  We chatted for a bit and then he asked me what my perceptions of the situation were. Many doctors would instead start a standard litany of logically ordered questions.  But this physician wants to begin with my explanation of my experience.  When he goes to the board to sketch an outline sorting out the symptoms, the proposed diagnostic procedures, and the differential diagnosis, carefully explaining each step, I know that I have the right oncologist.  I fill up my patients’ boards with the same type of explanations (I always carry three different colored dry-erase markers in my pocket).  It is sort of a trademark of mine.
While I am enthused about my choice of oncologist, it is hard to be enthused about the differential diagnosis.  First is some type of lymphoma, and probably not Hodgkin’s disease that is in many ways better than the other types.  Next there is a serious disease with a funny name – hairy cell leukemia.  Finally there is CLL, probably chronic prolymphocytic leukemia.  And way at the bottom of the list is the rare, exotic tropical, viral explanation for my massive spleen.  I might have voted for these.
One unexpected finding was a series of enlarged but painless lymph nodes in my groin, inguinal nodes.  These are the most logical place to start hunting for an explanation, for those aberrant cells.  We need to do a biopsy as soon as possible.  I have my list of surgeons in my pocket.  But it’s Friday afternoon.  I suggest adding a PT/PTT, blood coagulation studies, to the list of labs I will need drawn. I know that the surgeon will not go near me with a scalpel without these results.  I trudge to the lab – there is no question about it now – I am a patient.

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Comment issues

I spent much of a rainy Sunday afternoon browsing other cancer blogs.  I was really amazed at the breadth and scope of the dialogue, at the quality of writing, and perhaps most at the grand sense of humor that I found.  I left messages at most of them as well as an invitation to visit this site.  I was truly excited then by the highest turnout yet for my blog – 62 visits!

I did find out though that there was trouble with my software or server.  It is not possible to view my pages containing information about me, my disease, and this site.  Nor does it seem possible to view individual posts and leave comments.  Although with this site you need to register first with WordPress by clicking the “Register” button in the “Meta” section in the right column.  When I decided to host this blog, my first, I don’t think I knew what I was getting into technically. I use WordPress software, Fetch FTP software, and Laughing Squid in San Francisco as my server.  I am in the center of the country in Indianapolis. I will be working on these technical issues today (after my two granddaughters get picked up later).

In the meantime please feel free to contact me if you like at beingcancer@att.net

Dennis

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The Diagnostic CT-scan

Journal – December 2001

I have to go to an outpatient diagnostic facility on the other side of town because it is the only one that can get me in today.  I realize that this is my first day as a patient.  But subconsciously my persona is still that of a clinician.  I drink three big glasses of contrast medium – sweet but bitter at the same time.  Is it just my imagination or does my abdomen feel incredibly full?    Then I am called back.  I talk with the technician – I think my left AC has a good vein.  Actually my friends and I checked both arms yesterday.  I have lots of good veins – right now. Is that an 18-gauge needle you are using? Wow, this is kind of interesting! All this clicking, the revolving sounds.  But what will the scan reveal?  What is it seeing, seeing deep inside me?
I am more anxious than I thought I would be.  Later I go home and try to keep busy.  On the Internet I look up “spleen,” “splenomegaly” and “splenectomy”.  I call friends from the local Oncology Nursing Society chapter.  Who can you recommend as a surgeon?  I don’t even think about asking for a recommendation for an oncologist.  Maybe I am not ready for that.
Tuesday is a long night. My mind starts to wonder.  The spleen is not my big problem.  My biggest problem might be what’s causing it.  I focus again and again on the differential – lymphoma, leukemia.  But there are other possibilities – viral infection, malaria.  I have traveled in the developing world and once came down with typhoid fever.  Maybe it could be something like that.  At 2:00AM  I take a sleeping pill.
If Tuesday was long, Wednesday is even longer. Last night I called the unit to check on staffing.  We had too many nurses scheduled for Wednesday so I decided to take the opportunity to be off.  I can’t concentrate anyway.  A couple of my Methodist colleagues return my phone calls.
By the way, what about an oncologist?  Who would you recommend, I mean, just in case. Maybe they will give me my CT films to take to my doctor, or maybe even to my new surgeon.  Why do I get a sharp pain in my lower abdomen whenever I take a deep breath?
I leave for the CT clinic to pick up my films.  The sun is bright.  The day is warm.
Maybe this is something innocuous after all.  I really feel too good today, driving down this sunlit road, to imagine that I might be seriously ill.  At the clinic I give my name and they hand me the large manila envelope with my radiology films.  Back in the car I decide to glance at the films even though I doubt that I can read them.  Two typed pages fall out – the radiology report.  I sit staring at that report for long minutes: “Impression:  Massive splenomegaly.  A hematologic abnormality be it leukemia or lymphoma must be considered in the differential diagnosis.” 
In a daze I drove across town to my doctor. Tom had spoken with the radiologist late the evening before, insisting on a reading as soon as possible.  He was starting to worry about me because he assumed that I would be there for a morning appointment.  We talked briefly about splenic rupture and splenic infarct.  He showed me my labs.  White blood cells 27,000 – 78% of those lymphocytes (both too high).  Platelets only 69,000 which explain those bruises everyone kidded me about over the past month.  Tom said that he was leaning toward a non-Hodgkin’s lymphoma.  I needed to see an oncologist as soon as possible.  I had the name of the oncologist, Raymond Markham, that I had selected after consulting with my cancer nursing colleagues who practiced at the hospital that this oncologist was affiliated with.  I told Tom that I needed to wait until Tish came back tomorrow afternoon.  I left the office and had trouble finding my car in the nearly empty parking lot.  I never lose my car, not before this.
I get home and my youngest son, Aaron, runs out to tell me that he has had three calls from doctors in the past 10 minutes.  Two from Tom, our family doctor, and one from a new doctor who told him that I have a Friday morning appointment.  Aaron is getting ready to leave for a four day National Catholic Youth Conference in downtown Indianapolis.  He had noticed on Tuesday the bandage and cotton ball on my arm.  And he now realized that I had taken the day off from work.  I have not thought this through and vaguely worry that I may be in the hospital by the weekend, before he returns home. So I sit Aaron down on the front steps and tell him that I might have a type of cancer.  I start to get tearful which I did not want to do – not now.  I regain control.  I tell him to pray for our family during his retreat.  Then I send him off.
As soon as they drive away I worry that I have made a mistake in telling him like that.  I try to call out to them as they back their car into the street.  I want to tell Norma, the group leader and our neighbor, what was going on and what I had told Aaron.  But they do not hear me.
It is an unseasonably balmy evening.  The wind is blowing through the now leafless trees.  Periodically I reflect on how incredibly beautiful and fresh the night seems.  I imagine that already I am starting to see the world differently, that I am experiencing things anew and with great intensity and a newfound sense of appreciation.
It’s almost midnight.  I feel better, I feel exhausted, but I cannot sleep.
Tish flies in around noon tomorrow, Thursday.  I had consulted with several women friends about the idea of waiting until Tish arrived home before I told her about the events of the week.  I really wanted her to enjoy her holiday.  I knew that after I told her that I might have cancer, that her life too would never be the same. If I called her tonight, she would not sleep.  I was fortunate to have a good friend to support me through this week.  I could not imagine that night how many friends I have and how much support would soon be offered to me.
I know that I cannot sleep.  I try to quiet my mind.
This can’t be true.  It can’t be.  This can’t be happening to me.  What’s the reason? Why would it happen?  Why would it happen now – I’m only fifty-four.  Why me anyway?  My clinical mind answers: But this can be true.  This is exactly how it happens to everyone with cancer.  It’s never anticipated.  It’s never fair.  And there seldom is a reason. At 2:00 AM I take a sleeping pill.  I sleep somewhat fitfully.  Each time I stir and start to awaken, a single word comes floating to the surface – “cancer”.

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Before Cancer Diagnosis

I am trying to get into a rhythm of posting three times a week.  I will try alternating sections of my cancer journal with current meditations.  I did just add some pages “About T-PLL”, my disease, “About this site”, and “Contact info”.  I am still struggling with my blogging software to add some pictures.  Bear with me.

Journal – December 2001

Okay, it’s the weekend and I am scheduled to work at the hospital. There is no need to panic. One of our surgeons is seeing a patient on our unit so I ask him to examine my abdomen.  There is no mistaking the “fullness” as it is clinically called.  He says I need a CT scan – he would like to have it done today.  Okay, so now I am a little panicky.  I tell him I need to see my primary care physician.  My insurance has contracted with a different hospital, Methodist.  I cannot have any testing done at Community unless I pay for it myself.  And CT scans are not cheap, probably around $1500.  As I work through the weekend, I am even more aware of how tired I am.  Could my fatigue be due to something other than aging and hard work?  On Sunday night I am sitting in front of the television.  Aaron, my youngest, tells me that I look terrible.
My wife, Tish, is out of town, having driven her parent’s car to their winter home in Florida.  She is planning to stay on for a few days holiday.  She calls me at home on Sunday night.  I sound funny?  No, everything’s all right.  I’m just tired from the weekend.  I saw no reason to alarm her.  There is nothing that she could do.  Cutting her holiday short and flying back home early made no sense at this point. What would I say anyway?  I found a mass.  I am going for tests.  She should come back and be anxious and wait with me.  No, better to wait and see what we are dealing with.  There will be time enough to wait and worry together – if that is how it turns out.
Early Monday morning a GI doctor, a colleague of mine, shows up on our unit to see a patient.  I ask him to take a look.  He agrees with the proposed CT scan and concludes after a more thorough abdominal exam that the fullness is an enlarged spleen.  I call my primary care physician and grab an 11:00 appointment.  Connie, Marie and Carla volunteer to watch my patients.  Tom Moretto, my doctor, agrees with the proposed CT, and as soon as possible.  By the office scale I have lost 6 pounds since September.  We also draw some blood – a complete blood count and metabolic panel.  By the time I return to work, I receive a telephone call informing me of a CT appointment for the next day, Tuesday. The rest of the day drags on as do I.  By evening I feel incredibly tired.  One of our new RNs, Mandy, notices a rash on my arms.  My temp is 99.4 – my baseline is 97.4.  I go home and sleep for ten hours.  It would never occur to me that this will be my last day at work in months.

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