Days in Hell

Journal – December 2001

The oncologist asked me what I knew about the disease.  I recounted what I had read though without mention of prognosis.  He elaborated for a while on my disease – T-PLL – discussing it in reference to other leukemias.  Even though it was classified as a chronic cancer, it acted aggressively, more like an acute leukemia.  He talked about his plan to start me on CamPath, a monoclonal antibody.  It works differently than traditional chemotherapy which can be thought of as poisons but which are not very effective in combating my disease.  Because of the possibility of severe infusion reactions such a fever, chills, shakes, and low blood pressure, he wanted me to enter the hospital for initiation of the therapy.  And, no, he did not want to have a central venous catheter put in me due to the risk of infection.  He also wanted to start me on two antibiotics, Septra and Famvir, to prevent protozoan and viral infections.  The main concerns were pneumocystis carinii and cytomegalovirus, two pathogens that plague the population of persons with AIDS.  Even herpes simplex could be a problem for me with my compromised immune system.
I had more blood drawn after the appointment.  We agreed on Tuesday to enter the hospital in order to start treatment.  Three days with increasing doses of three, ten, and thirty milligrams; followed by weekly thirty-milligram doses.  This would go on for 12 – 18 weeks.  Once in remission we would consider what is known as a mini allogeneic stem cell transplant.  Allogeneic means that I would require donors.  I replied that I had two brothers and one sister.  He had in fact already spoken with a transplant physician, one that I knew.  We had audiotaped this appointment so that we would not miss anything.  But I would not replay this tape for almost a month.  He also commented that we had covered in twenty minutes what he would normally discuss over four sessions with a less informed patient.
Aren’t I lucky! I can immediately appreciate, imagine, and foresee all of the things that most patients are fortunate not to know at this point.
The drive home is fairly silent and dark.  On the way my thoughts strangely focused on how to tell the staff, my friends at work that had shown so much concern over the past week.  I had already decided that I wanted to talk with them before I started any treatment.  Now it was something that I knew I had to do.  I called my manager and suggested that I come to the hospital Monday afternoon.  It was a bit difficult for me to talk about because she probably knew enough to realize that this was not a good disease.
But now we have a diagnosis.  It is strange to be in the position of wishing that I had a
lymphoma.  No, we do not get to choose our diagnosis. I temporarily try to enjoy some small perverse pleasure in having a relatively rare form of cancer.  I have always enjoyed being a little different from others.  This is the beginning of a new journey. We have a diagnosis – T-cell prolymphocyctic leukemia.  Stop the world, I want to get off!

I don’t remember Friday evening.  I do remember crying in the shower on Saturday when I began to think about my kids and of all the things that I might not be around to see, to witness.  I remember crying in the afternoon, sobbing with Tish holding me.  This was the longest weekend.   I was so scared.  I knew too much.  I knew too little.  I imagined too much.  Maybe I imagined too little.  Hope seems elusive.  And I could not at this point even begin to construct the kind of positive attitude that I know will be essential for healing. These were my days in hell.


“Swine” flu notice

I am posting this FYI – it is written for transplant patients but it should apply to anyone immmuncompromised.

NOTE:  I just found out my beingcancer email has been offline.  I apologize and will answers all emails shortly.

BMT InfoNet has received a number of inquiries from transplant patients and survivors about the swine flu. We’ve asked medical directors at transplant centers throughout the US what they are currently recommending for their patients and survivors. Nearly all have said that, at the moment, they are not recommending anything different than what they normally tell patients about infection prevention:
Avoid crowds if your immune system is still compromised – malls, crowded stores, theatres, churches, etc.
Cover your nose and mouth with a tissue when you cough or sneeze. Throw the tissue in the trash after you use it.
Wash your hands often with soap and water, especially after you cough or sneeze. Alcohol-based hand cleaners are also effective.
Carry a gel-based disinfectant with you when in public and use it after touching things touched by people you don’t know like door knobs, elevator buttons and money.
Avoid touching your eyes, nose or mouth. Germs spread this way.
Avoid contact with sick people.
If you develop flu symptoms, call your doctor immediately, especially if your symptoms include a fever.
Get plenty of sleep, be physically active, manage your stress, drink plenty of fluids, and eat nutritious food.
In addition, many are temporarily recommending against travel to Mexico, or contact with people who have recently travelled to Mexico.

The Centers for Disease Control (CDC) is closely monitoring the swine flu and will alert the public if the situation warrants further action. You can find more information at the CDC website

If BMT InfoNet learns of any additional precautions that pertain to transplant patients and survivors, we will pass that information along to you. As always, your best source of information is your doctor who knows your medical history best.

Best wishes,

Sue Stewart
Executive Director, BMT InfoNet

Blood and Marrow Transplant Information Network – (BMTInfoNet)
2310 Skokie Valley Rd Suite 104
Highland Park IL 60035
847 433 3313
847 433 4599 (fax)

BMT InfoNet….we’re with you every step of the way!


My First Week in Hell

I am gratified by the increase in interest in the blog and the increase in comments.  Luckily though I have Askimet spam software because all of a sudden I have been attacked by a surge in spam – 37 in just a few days.  What is this about? Get a life people!  I will continue with my journal below, then go outdoors to garden.

Journal – December 2001

The trouble with being a nurse, especially an oncology nurse, and most especially an inpatient oncology nurse with a new diagnosis of a hematological malignancy is that we know too much, and we know too little.  What we don’t know already, we know how to discover.  Cancer, pain, courage, despair, dignity, all manner of suffering have come to form the collage of our day-to-day reality.  We can imagine all of the horrible possibilities, all of the potential sequelae, one complication leading to another, and all leading to that terminal event, inescapable for all of us, but much more real and palpable to the person with cancer. Will death come early for me?  How early?
I have not written for two and a half weeks.  It was too painful, too raw.  My energy is limited.  It needed to be diverted to other things now – getting through the first weekend after the diagnosis, getting through hospitalization and first three days of treatment, focusing my energy on enjoying my family and this favorite family holiday. What will this Christmas be like?  Will this be my last Christmas?
My surgeon said on Monday that if I have not heard from him by Wednesday noon, that I should call his office.  Over the past few days I have heard from friends and family – words of encouragement, tales of acquaintances who have survived lymphoma and were three, five, ten years out.  Ten years is not so bad, not quite retirement age, but time enough to accomplish a lot of things – continue to work on international projects, complete longstanding projects on the house, time enough even to resurrect some of the old boats that crowd my garage, er, my boathouse.
Ten years is not so bad.  And there is plenty of time to get used to the idea of that specific mortality.
Wednesday noon comes and goes.  I am strangely not that anxious now to know the news.  I am in the living room relaxing to music though every time the phone rings, the adrenaline pulses.  Finally about 2:30 and at Tish’s urging, I telephone. The receptionist answers, says that my doctor is not in, and that she has seen no pathology results and probably will not get them until Thursday or Friday.  Pathologists!  This is a familiar story for me as a nurse.  Patients waiting for biopsy results, waiting to find out what type of cancer they have or if they are now in remission or not.  But there is a new urgency to this familiarity.
Thursday is another in a series of long days.  I call the surgeon’s office around noon to check – nothing yet.  I have some work to do at the computer but try to stay off the Internet in order to keep the line clear.  I keep the portable phone next to me.  Finally around 3:15 the phone rings.  It is Larry Micon.  He asks about my incision and I tell him that it is fine, that he is an artist with a knife.  He says that he has the results.  He tells me that biopsy reveals that I have T-cell leukemia.  This throws me off a bit – T-cell leukemia?  what’s that?  I know about acute leukemias, ALL and AML with all their subtypes. I know about chronic leukemias – CLL, CML, hairy cell, mantle cell, but T-cell?  I am at a loss of what to ask.  I had my 2400 page textbook open to the table outlining the various types of lymphoma.  Leukemia is an entirely different thing – scarier in my mind.  I ask how reliable, how definitive are these biopsy results. He says that they are quite reliable.  He says that both my oncologist and my primary physician will be receiving the results.  He suggests that I call my oncologist today.
I quickly flip my textbook to the index.  One section talks vaguely about T-cells in relation to acute leukemia – prognosis two years is what catches my eye.  Not quite ten years, not at all.  I quickly call the oncology office.  It is only 3:30 on Thursday afternoon but I get the answering service nonetheless.  The girl tells me that this is the afternoon of the staff Christmas party and the office is closed.  My mind panics.  She then says that if this is an emergency, she can page him.  Well, yes, my surgeon did instruct me to call  today.

This is the longest hour yet.  Tish is at work.  It is dark and cloudy outside.  I pour through a few more books without much success.  Then I remember that our third differential diagnosis was CLL.  That is easy to find.  And it does mention T-cell disease as representing only 5% of CLL cases.  The other 95% are the much more common B-cell variant. This does not sound too bad.  B-cell is slow growing, indolent, almost subclinical in expression of symptoms.  Many times it does not even require immediate treatment.
Yeah, but mine is T-cell and pro-lymphocytic at that!  What does that mean?  Nothing in all of my many texts reveals anything further.
It has been an hour since I talked with the answering service. I am ready to call the service again when the phone rings. Ray apologizes for the delay.  He is calling from the Christmas party.  He says that he knows the biopsy results and has a treatment plan in mind, a drug called CamPath.  He wants to meet with us tomorrow afternoon.  He also explains that my disease is properly called T-cell prolymphocytic leukemia or T-PLL.
Armed with new search word “prolymphocytic”, I cannot resist searching the web. I look through a number of results, settling on an article by someone from the Royal Marsden Hospital in London.  I have visited there before, have even presented a lecture there.  Marsden is the foremost cancer institute in the United Kingdom.  I quickly scroll through the article, then freeze near the end where the median prognosis is given as seven months.   But the article also described the disease as invariably fatal.
Tish comes home and I tell her about the phone calls and the appointment.  I do not tell her about the prognosis and hide the article.  I cannot remember that evening – maybe we watched a movie.  I remember feeling utterly terrified – seven months!  I was on the computer early the next day.  I think that I found a chart that listed prognosis as 24 months.  Tish picked me up the next day.  I felt in a daze and at one point did not realize that she was talking to me on the way to our appointment.


Immediacy, Blogging and Cancer

Yesterday I was able to publish a new page – “Cancer Blog Links”.  I plan to continue to add to this content, especially to round out the selection of less common, less vocal cancers (the activist nature of specific cancer populations being an unusual cultural phenomenon).  Predictably perhaps the best represented cancers were breast cancer and Hodgkins disease.  I contacted everyone who was on the blog list.   I had my highest turnout to date, over 120.  Also I received the most comments ever.  Thanks to everyone for that.

But as I read more and more blogs, I recall that sense of immediacy that comes in the months after diagnosis or relapse when treatment is still very much ongoing.  This is a time when the nerves are still raw, the future more uncertain, the stakes still so high.  I hate to say but, in a way, I miss that.  Make no mistake, I am very gratified to be over five years out from my last bout with leukemia.  I am gratified in fact just to be alive today because back then I doubted that I would still be here in 2009.  This is well beyond when I thought I would live.

Cancer is more than a memory, more of a lingering shadow, potent in its threat to return at any moment.  It has in many ways determined my present and future in cutting off certain avenues, in limiting the number of paths that I might select to explore.  I am blind in my left eye and still experience fatigue and occasional infections.  My skin is fragile.  I bleed and bruise easily.  I have not returned to work.  I have been on disability for five years.  That fact of not working, not actively bringing money, and consequently the value attached has shaped how I regard myself, how I define myself in relation to being a person in this world.  And this all occurs without the drama of the ongoing debilitating effects of disease and treatment.  All of the attention and affection which others in your life direct towards you gradually fades as it necessarily should after recovery.

Survival can be a slog, protracted, fading in its wonder and richness.  Again I marvel at being alive 88 months after being diagnosed with a disease described as being “invariably fatal” and whose median survial is 8 months.  No I don’t mean to complain but merely to comment, to reflect, to observe on my life now and on how the contours of that shadow that still follows me have so definitely nudged my course forward.

Such reflection is important as the writer of a blog on cancer.  What is it that I bring at this moment to my writing?  I recall from my blog browsing yesterday the image of another survivor whose own cancer felt weak and less significant from that of her neighbor in the next bed whose cancer had a more aggressive and physically obnoxious nature.  It was as if one person’s suffering somehow diminished her own.  Many of us, in seeking to search for the good and hopeful signs during our battle with cancer, succeed in finding reasons why we prefer our own suffering to another patient’s.  It is perhaps part of the nature of surviving.

So what can a bring to my writing when the immediacy of the threat of active cancer is not present?  I too felt, like my fellow blogger, that the history, the story of my own suffering pales because it is mostly passed, because now, today I am or seem to be in a much better place than others in this community of cancer bloggers.  My reasons for writing this blog are perhaps different.  In the beginning I wrote for me.  Writing was fighting.  Writing was giving shape to my drama, strength to my purpose.  Writing was part of my survival.  And if not survival, then putting forth a testament to how I once strived to make one final difference in the world – how I fought and lost or fought and won.

My story has been told before, over years, as live action drama.  So it is not new or fresh.  Others know the beginnings, middle and endings. But writing is always about sharing.  So I guess that I offer this blog in the belief that it has some value that others with cancer may draw from to take and use in their own struggle as they might.  All stories of redemption, of resurrection are stories of hope.

I still write for me.  If I write just for you it will not work for either of us.  I write out of the hope that I might somehow still make a difference.  But the journal of my history is not enough.  It is a mere part of the project.  I struggle to find reflections that round out and lend meaning to my presence.  I look for other ways to find an audience, to build a real if passing community.  I seek ways to build bridges, connections, mutual and reciprocal.  The traffic and commerce on bridges should go both ways.

I yearn, as all bloogers do, for validation in the form of comments and ideas.  I do not propose to put a burden on my readers – the responsibility of reciprocity.  I merely hope to extend permission, to expose, awaken , nurture …. courage, hope, faith,  empathy, sharing.


Pain and Waiting

The weather here in the midwest has been perfect.  The garden calls more loudly than the computer so no new entries and no work on my cancer blog links page.  But I have felt tired and sleepy the last few days, causing my mind to question again – anemia?  My clinic appointment is still a ways off.  Also I noticed a large bruise on my leg – thrombocytopenia?!  Well, I’ll not worry about it.  I’ve been doing heavy work in the garden after, a perfectly logical, likely explanation.  Still …..

Journal – December 2001

~ Pain and Waiting ~

Now I know why they call us patients.  It’s because we spend so much time waiting that we have to have patience.  We wait for appointments with doctors; then we wait in their offices to see them.  We wait in line to have our labs drawn; then we wait for the results.  We wait to have tests scheduled.  We wait in pre-op registration, in the Same Day Surgery lobby, in the pre-op cubicle, wait for the registrar, the nurse, the transportation tech, the surgeon, and finally the pathologist.  Waiting for pathology results is the most difficult yet. What specifically is wrong with my body? Where exactly has it failed me?  We cannot move to the next level until we have the results of the node biopsy.  And we cannot begin treatment until we know the answers to all of these.  I am in limbo.  My family and friends are in a state of suspended anxiety.  But I am patient.
When I get home from the oncologist’s consult, I have a call from his office. They have scheduled another consult with a surgeon on Monday morning.  So it will be a long weekend.  My fever arrives faithfully in the early evening – 99.8, never higher.  Sometime that night I am aware of increasing vague discomfort in my belly, broken only by occasional sharp, stabbing sensation in my lower left abdomen.  This pain gradually increases over the weekend, becoming more constant and more persistent.  I start to treat it with 1000 mg acetaminophen, Tylenol, though not too often as I do not yet know if anything is malfunctioning with my liver.  The pain seems positional, increasing whenever I move.  At times I grimace and clutch my side, somewhat embarrassingly.
Monday morning I feel exhausted, overwhelmed and depressed.  I tried to do too much on Sunday but I don’t regret it.
I drive to Tish’s office, which is only 5 blocks from the hospital.  We go in her car to Methodist.  We meet the surgeon, Larry Micon.  He does a short interview and exam, especially of the inquinal nodes – one is quite large.  He agrees that we need a biopsy as soon as possible.  When he asks, I tell him that
No, I am not nervous and don’t need any medication outside of the local anesthetic.    We get a surgery suite reserved for 2:30.  Larry says that I can have a Pepsi to drink– I am parched.  It is only 11:30 so Tish and I go to the cafeteria.  We both like the surgeon.  She asks me some medical questions.  I know the answers to some of her questions, but not to others.
We go to the information booth and ask for directions. The lady asks for my name and then refers to various printed lists on her clipboard.  Then she makes three or four phone calls before finally sending me down the hall to outpatient registration.  There I wait in line until my name is called.  The girl at registration is pleasant but also has to make several phone calls in order to figure out where I am to report.  I am ready to have her call the surgeon’s office since they obviously know where the procedure is being conducted, when she finally figures out that I need to go to Same Day Surgery.  Reporting to Same Day, the receptionist again consults her clipboard and cannot find my name and she begins her own series of phone calls.  It finally becomes clear that my case is in that netherland known as “add-ons” – unscheduled procedures that have been added on with short notice.
My name is called and I am led back to a cubicle.  The nurse, Irene, is nice and begins her pre-op assessment.  We go through my medical history quickly as I essentially have none.  She is ready to go through just as quickly the question Have you been out of the country in the last 12 months?  The flow of the interview is halted as I begin my listing of my last six trips abroad.  But she decides to interrupt me and to proceed to the next question.  As she places the ID and allergy bracelets to my arm, I recognize this as another rite of passage from personhood to patienthood.  After that of course comes the next rite of passage – the all too familiar patient gown.
About 2:40 we pressed the call light.  We share a funny paranoia, based on the day’s confusion at this hospital, that my surgeon was in some other part of the building waiting for me to arrive.  Another nurse answered the light and said that she would check.  Twenty minutes later Tish went to look for her as she had not returned.  That nurse had passed it on to my nurse who had not gotten around to checking yet.  I still do not know what happened actually but about 3:30 the nurse came to tell me that Same Day was really busy and that they decided to move me to an Outpatient Surgery section back in the Professional Building.  Ten minutes later I was on my way, down to the basement through endless hallways, across to the Professional Building, up to the first floor then around the corner to Outpatient Surgery.  My first ride on a hospital cart.
I talked with the nurses in surgery.  I knew one nurse slightly as she once worked at my hospital.  The doctor arrives.  Yes, he uses sodium bicarb to cut down of the sting of the lidocaine.  I am connected to a blood pressure monitor and another machine that monitors my heart rate and oxygen saturation.
Are you nervous? the nurse asked. No, why?  –  Because your heart rate reads 240!  –  I reply Now I am nervous! It’s just a bad reading.  Next she attaches the electrodes for the EKG monitor.  Then she apologizes as she wraps something cold around my ankle. What’s that? I ask her. Just your electrical ground for when the doctor uses the Bovie. So I tell her I’m going to stop asking you questions.  They strap my legs down but leave my arms free so long as I don’t move.  The nurses stretch a drape across my chest so that I am not tempted to rise up to see.
The surgeon injects the lidocaine (it burns even with the bicarb!).  After it takes effect, he injects more into the deeper groin tissue. I have a sensation of cutting but not pain later so he injects more.  I feel as if I am fairly relaxed but then I notice my upper body tensing up several times.  We talk throughout the procedure.  I tell a few physician jokes.   He asks me if I want to see the node –
yes – a pink fleshy piece of tissue about the size of a little finger.  It is 2 or 3 times as large as it should be.  And yes it is unnaturally rubbery.  But Larry declines to speculate on the significance of that.  Only pathology will yield the answers.
I scoot from the table to the cart.  Back in post-op I transfer to a recliner. The recovery nurse gives me water, crackers, instructions and a Lortab tablet, a mild narcotic analgesic.  After another 15 minutes Tish helps me dress.  I can actually walk pretty well.
Tish and I have had this discussion all day about whether I should drive my truck back home from her office.  I suggested that we wait and see.  Now I decide to try it.  Tish is still hesitant as I have to lift my left leg out of the car – it’s a bit tender.  I climb into my truck, buckle up, and start the engine.  When I look up, Tish is gone.  I am gratified by her sudden confidence in my ability to drive by myself.  I arrive home a few minutes before her.  Where was Tish?  She has been distracted by everything going on in our lives.  About halfway home, she suddenly realized that she had driven off without me.  So she pulled over to the side of the street (during rush hour traffic) and waited for me to pass, hoping that I was taking the same route home.  I did not notice her but she sees me and follows me home.  It gives us something to laugh about – then and now.  The tale will become woven into the fabric of this story of my illness.
Nothing to do now but wait.  Longer than we were supposed to, longer than we were prepared for.