Terrie's Journal

2005-03-27T18:44:00.000-08:00

Dear family and friends,

I am very grateful for all of the heartfelt words you have sent and spoken, as is Terrie’s family.

I walked out of the church on Thursday absolutely clueless about what would happen next, ever. It may stay that way for a while. Thank you for the kind invitations to visit.

Some have asked whether there was anything from the memorial service that they could read, and I’ve posted a couple of selections below. Family members collected some stories and memories to share, and Murray family friend Jim Stewart read some of them. My sister Carol read the last portion of Terrie’s culminating written study at Vermont College, The Colors of Home. Although it feels pretentious, I’ve also posted what I wrote, by request. We do not have a copy of Ron Holloway’s comments (the attorney and friend with whom Terrie worked for 24 years), but he spoke eloquently about Terrie’s professional life and their long friendship.

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Portions of Terrie’s memorial service, March 21, 2005.

Family remembrances, read by Jim Stewart:

Sian (Carol’s daughter) remembered a family vacation together in England when she was eight years old, and for the first time got to stay up for the traditional card-playing. Terrie asked Sian to share her hand with her, being far more interested in having fun with Sian than in her score at Up-the-River-Down.

Carol (Al’s older sister) brought up the two family cookbooks that Terrie got us all to contribute to. I really appreciate her pulling that project together in a way that drew our two families together.

Her siblings concluded that Terrie was a hippie born twenty years too late. She didn’t care what other people thought of her appearance. She was Terrie and that was that. She did care about what people think, but despite being interested and listening, she was very steadfast in her beliefs. No one could change her mind.

She was proud to be a conservationist, not because it was correct, but because she believed in it. She said to one brother that “I don’t go out to hunt wild meat but if it winds up on my plate I’ll eat it.” He said that he was very careful to never talk about bird hunting with her.

Rick said that Terrie is such an elegant writer that she could paint a picture with words. He always eagerly anticipated reading her stories of bird-a-thons and birding trips to Mexico and elsewhere. Both Randy and Rick (Terrie’s brothers) were quite moved by the piece that Terrie wrote about their mother, “She makes the muses dance”. They said that after reading the piece you felt as if you had known her mom. “Terrie’s gift of making words paint a picture for you gives the picture in only the words that you need, not more.”

We all agreed that Terrie has gotten many of us hooked on birding. Carol and others admired how she could recognize any bird call that we heard together.

Her siblings also admired the story Terrie wrote about their Howell grandparents and a day-long trip that they took together, to go shopping for a special purse for her grandmother. The story describes the day and the many shops and disappointments, and the final success at finding the desired bag. Grandpa Howell also bought two monogrammed hankies for Grandma that day. And then Terrie describes the purse that she still has, and finding the two hankies wrapped in plastic inside it, and the card that read “From Honey to Honey.” This was Terrie’s title for the story.

We all recalled how Terrie didn’t like talking on the phone. If you got a two-minute conversation you were lucky. But she did send great letters in email, thoughtful, caring letters.

Her brothers remembered that as a kid Terrie loved gong to church camp in summer, probably because she liked living in ‘rough’ and being away from civilization.

Her siblings agree that Terrie was a very gentle person. Even when passionate about something she wouldn’t raise her voice. Hers was a quiet strength. As a friend she had an ability to cut through your feelings for you, to help you sort it out and find answers. She could help like this when talking in person, and in her writing.

Terrie never got angry. She was very even-tempered, but with a lot of emotion inside. She was very strong for everyone else. It was a rare person who ever found Terrie leaning on them.

Terrie was very committed, especially to promises. She promised her mother that she would complete her bachelor’s degree, no matter how long it took or what sacrifices she had to make. She had the perseverance to make it happen and was very proud of that accomplishment.

Terrie was very sensitive. She never liked to hear the emergency scanners that her brothers sometimes had turned on at home for their fire department work. It was too distressing for her to hear of people getting hurt or having troubles.

Carol recalled Terrie’s thorough sense of organization, both at her job with the law firm, and in her own work of completed coursework for her degree. She had an entire plan for the semester that charted out exactly what had to be done and when, and by sticking to that plan she managed her time and got every task done in good time.

Rick said that they are amazed at how Terrie has touched so many people in so many different walks of like that there isn’t a church big enough to hold them all.

Randy and Rick also agreed that if Terrie found us making such a big fuss over her as we are today, she would be very unhappy with us.

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From Terrie’s The Colors of Home.

“It is night, and the temperature is dropping again. Time to make a cup of hot, strong tea, wrap up in a blanket with a cat in my lap, and lose myself in the chapters of a really good book. I suspect that I will, once again, be out on the deck in my jammies in the morning, making sure the hummingbird fuel has not frozen. I know in my head that they are not dependent on the artificial nectar that I provide, that they essentially use it as “jet fuel” to get themselves jumpstarted in the morning so they can find their “real” food – primarily tiny insects. But still, when I see them coming every few minutes to tank up and get their little engines humming, I worry when I fail in my duty to have unfrozen nectar available. These tiny Anna’s are tough little birds, gradually expanding their range northward each year. I have at least four individuals that I can recognize, and I do feel a connection to each of them, even though I am fairly certain that they don’t feel the same connection to me. They’d do just fine without me. I only make it a bit easier for them on cold mornings, just as they make winter a little bit easier on me. When something makes you smile in Oregon in mid-winter, whether it be the emerald of a fern frond or the garnet flash of a hummingbird, you celebrate it as best you can.

It’s true that by February of each year I wonder what it would be like to live somewhere where the sun shines all the time, where I don’t have to carry an umbrella absolutely every day from October to May, just in case.

But I know that April and May are coming soon, and the roses and rhododendrons are going to start blooming, and the air once again will carry that particular scent of green that reminds me just how wonderful this place is. All that rain has made our heart-roots grow deep and hold fast to the land, and the land responds by allowing us to share with it the coal black ravens, the sky and water-colored herons, the flashing silver salmon, the pewter-colored bays, the deep green fir trees, and the ivory trillium.

The colors of home.”

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(My part; I thanked everyone for coming.)

It is challenging to view this as more than a sad and solemn occasion, a perspective I imagine some of you share. We must remember that we should come today to celebrate Terrie’s life and spirit with joy.

It may surprise those of you that have considered me to be a calming and collected person to know that I have uncovered a latent and quite effective talent for bursting into tears – I think these past several days have given me the cleanest cheeks in Christendom. I may cry today and in the coming days, but will also laugh, and I ask you not to be reluctant to share thoughts of Terrie with me, with each other.

A friend of Terrie’s wrote of her being intensely gentle, and of living her life with gentle intensity. Many others spoke of her joy in finding her voice in her writing, and, not surprisingly, of helping them to find their own.

As for me, what I will remember could fill a drawer, although I would probably put it in a pile. I’ll remember discovering that the sweetest salmonberries in the world are found out Basin Road in Juneau - they were big enough to share and all the sweeter because they tasted of her lips; of overcoming the fear and trepidation of turning friendship and infatuation into a committed relationship; of discovering the joys and friendships in folkdancing, playing Bulgarian and Macedonian music, and birding.

Terrie took the doctors’ final news with acceptance and peace, and showed determination, wit, compassion, and insight to the end. They told her she had 24-48 hours; she went with 49. As I drenched her shoulder with tears, I apologized for adding another form of hydration to her treatment; she answered, “Well, we haven’t tried that method yet.” When I continued to break down, it was she who comforted me, even reaching for the Kleenex box for me – I’m sorry, that would be the box of Kleenex brand facial tissues.

When I whispered that I wasn’t ready, she said that accepting her fate and being ready are two different things. I believe she meant that she wasn’t ready either, but only in the sense that she had so much more life, love, learning, and sharing that she wanted to experience. She was also asking me to accept her coming death.

(Someone posted the following poem in a comment anonymously. I took the liberty of reading it. My thanks to the poster.)

HENRY SCOTT HOLLAND poem

I am standing on the seashore.
A ship spreads her white sails to the morning breeze
& starts for the ocean.
I stand watching her until she fades on the horizon,
& someone at my side says,
“She is gone.”

Gone where?

The loss of sight is in me,
not in her.
Just at the moment when someone says,
“She is gone,”
there are others
who are watching her coming.
Other voices take up the glad shout,
“Here she comes,”

& that
is dying.

(Me continuing.)
Some of you have noticed that I have been wearing 3 bracelets. The yellow represents a fund raising campaign for cancer research. The pink is for the efforts to combat breast cancer.

The woven red one is more difficult to explain, since I was not present at its creation. I don’t really understand it, but I think it blends elements of the Chinese philosophy of Feng Shui with paralegal power, and is something my imaginative colleagues developed in their continuous quest to meet challenges in work and life.

In a similar way, I don’t fully understand the profound faith of my mother and father, and often question and cannot define my own. Yet I know that even though Terrie’s loving spirit remains here with me, with us, she has sailed to that other shore, to be greeted by her mother, her brother, her beloved grandparents.

And that is the beginning of comfort and peace.

(End of memorial service selections.)
*************************************

This is Al again. My family deemed me safe enough to leave me on my own for a couple of hours a few days ago. I put in one of Terrie’s CD’s, The Chieftains (Tears of Stone), while trying to work on some things. There is a reading by Brenda Fricker of the W.B. Yeats poem Never Give All the Heart. I bawled, of course.

W.B. Yeats - Never Give All The Heart

NEVER give all the heart, for love
Will hardly seem worth thinking of
To passionate women if it seem
Certain, and they never dream
That it fades out from kiss to kiss;
For everything that's lovely is
But a brief, dreamy. Kind delight.
O never give the heart outright,
For they, for all smooth lips can say,
Have given their hearts up to the play.
And who could play it well enough
If deaf and dumb and blind with love?
He that made this knows all the cost,
For he gave all his heart and lost.

I gave Terrie all my heart, but did not lose, for Terrie gave back infinitely more than I could give her. I would give anything to have her here with me again, though. Most of the time I just find it hard to believe that she is gone. It’s not that I think she’s somewhere specific, just that she’s away but will be back soon.

Thanks for being there. And here.

Al

A deafening silence

2005-03-21T23:58:00.000-08:00

Dear friends and family,

Terrie passed away today, this first day of spring, about 1:30 PST. Her last several hours were quite peaceful, with family all around and the thoughts and prayers of all of you in our hearts.

We will have a memorial service to remember Terrie's life and continue to share her spirit on Thursday, March 24 at noon at First Presbyterian Church in Portland. Please be with us in spirit.

I will post some more thoughts later this week. I am aware that many have posted comments to the last post; thank you for doing so. I have not read them yet, but will. I think I'll be ready to do so tomorrow.

The silence is deafening to me.

Thanks for being there. (I don't think that Terrie meant she was glad you weren't here.)

Al (& Terrie)

Terrie's condition

2005-03-20T22:57:00.000-08:00

This is Al. Terrie is resting peacefully beside me at the hospital. She is at the end of this part of her journey. She probably won't last another day.

We came to the hospital last Monday as planned for a 3-4 day stay for inpatient chemo. The combination of the chemo and her poor condition led her kidneys to stop functioning. They tried giving her transfusions and hoping that the kidneys would recover enough to begin working. The other normal possible kidney treatments, including a heart stimulant to get more blood going and dialysis, just weren't workable options for her - they would either do her in or cause other untreatable complications.

On Friday they told us that we should stop thinking about working toward the transplant. We still figured that we could work on her condition and at least give her some time to regain some strength. Saturday midday they told us that her kidneys were not recovering, and that there was nothing else they could do. By Saturday evening, she was in enough pain that we had to start the morphine drip. She was lucid enough to talk with the family members that were here, and with a few others by phone before the pain medication. She was accepting, witty, caring, and insightful to the end. Now we are making her as comfortable as we can.

We are grateful for the family and friends who are here, both literally and spiritually. Terrie knew you were thinking of her, and we thank you for all the loving concern. I will post another message later with more news and thoughts.

Thanks for being there, everyone.

Slow Steps - but moving forward

2005-03-11T16:44:00.000-08:00

Yesterday I had a dressing change on my PICC line and several routine blood tests. Although I have to go in for another red blood transfusion on Sunday (I didn't even know they did such things on Sundays -- perhaps it will be quiet), the important news is that they're starting chemo again on Monday. This one will be more difficult and will require constant hydration, so I'll have to do it inpatient. I check in at noon on Monday. They estimate it will take about 3 days. I won't be home during that time, so send thoughts and prayers to Al, the cats, AND me!

There is hope that if this goes well we will be moving on to getting mobilized for the stem cell transplant very soon afterward. I'll keep you all posted.

Thanks for being there, everyone.

All's Quiet

2005-03-08T11:54:00.000-08:00

I haven't been posting updates for a few days, mostly because there's nothing to report at this point. I'll see the pulmonologist later this afternoon, who will then talk with my oncologist, who will likely talk with the OHSU oncologist, and beteen them I'm hoping they will come up with a treatment plan which can be implemented quickly. I expect that will be only a slight modification of what we're already doing, but they could surprise me. When I know anything more, I'll share.

Thanks for being there.

Scheduling Delay

2005-03-01T17:45:00.000-08:00

I can't believe it either, but there you have it. They called me yesterday to say that they had inadvertently scheduled me to see the pulmonologist today when no pulmonologist is available. So I'm rescheduled for next week, March 8, at 2:45 and we'll try again. That means all I have this week is a PICC dressing change tomorrow and oterwise stay home, quiet, and do my best to get a little stronger.

In the meantime, my friend Pamela, who lives here in Portland and is a Hodgkin's survivor (also a stem cell transplant survivor) has an article about her in this month's Surf Life for Women. Check it out at http://www.surflifeforwomen.com/index.cfm?page=inspiration . It certainly inspired me!

Now How Many More Miles?

2005-02-28T11:54:00.000-08:00

I had my bone marrow biopsy last week, and I have a consultation with a pulmonologist scheduled for tomorrow. The pulmonologist will, we hope, shed some insight on the fluid which persists in my chest and is causing a fair amount of pain and discomfort, especially when I try to sleep. I'll meet with my oncologist soon after that and start a plan for probably two rounds of chemo and then back into transplant mobilization.

I spent Thursday night in the hospital having a red blood cell transfusion. I guess it did some good, although I'm still tired all the time and can't quite catch my breath. I think it's just going to be that way until we get this thing licked.

Thanks for all the cards, notes, e-mails, and gifts. You all are wonderful. Thanks for being there.

New Plan

2005-02-23T12:13:00.000-08:00

It may take these docs a few days to agree on a plan, but when they do, things start hopping again.

I'll go in Friday for a bone barrow biopsy to make sure, once again, that my bone marrow is clean. I should be getting a call shortly from someone in Pulmonology scheduling me for a consultation and possibly a fluid draining from my right lung/lung cavity. Then I start chemo again. I don't know how many cycles yet, or which drugs, but it will most likely be be only 2-3 cycles. Maybe fewer.

The biggest change is that because my blood does not seem amenable to letting go of stem cells, we're switching from harvesting stem cells from my blood to harvesting them directly from the bone marrow. It will be much more painful, but also much more reliable. We're hopeful that with the change in procedure we'll have been delayed, but definitely not stopped. All docs seem convinced that a stem cell transplant is still the best course of action for me, we're just taking a slight shift in direction in how to go about it.

Thanks for being there.

Treading water

2005-02-21T11:46:00.000-08:00

We had an appointment with my Kaiser doctor today to come up with a game plan for what to do next. Unfortunately, the OHSU doctor hasn't talked to Kaiser yet, and OHSU is closed today for the holiday. They will consult and should call me tomorrow, but I'm not holding my breath. Thanks for being there.

Setback and Regroup

2005-02-16T10:27:00.000-08:00

No one ever promise me this was going to be a neasy process, and it has not been.

The counts for my first collection day were low, and there is some 'stuff" on my scans from last week which needs to be looked at and evaluated before we move on. That's going to take some time, perhaps a week or two, so my OHSU doc made the decision to have the temporary collecton catheter in my neck removed yesterdat. I'll be seeing the staff at Kaiser to get the dressing on my arm changed, and perhaps talk some about what might be next -- maybe another round of chemo before we start the collection mobilization again. Maybe next time we'll get it right.

I'm disappointed, but compliant. I want this to work and iIll do whatever that takes. First thing, I think, will be a long nap before this afternoon's appointments.

Thanks for being there.

Collection Day 1

2005-02-14T19:14:00.000-08:00

Al and I thought it was so romantic spending Christmas Eve eating pizza in the hospital that we decided to do it again for Valentine's Day, but without the pizza. Checked in at 8 am for blood work, and they were once again concerned about low blood pressure. They kept me in the clinic while they checked the lab results to make sure they were okay. They were good enough, so I was admitted as a day patient to have the temporary catheter implanted for the stem cell collection. That unit of the hospital was also concerned about low blood pressure, low potassium, and mild dehydration. Fluids and potassium were given. Once the doctors were ready they wheeled me in for the implantation. The procedure went quickly, and then they wheeled me over to the next building to the apheresis section for collection. The stem cell collection procedure takes about 3 & 1/2 hours for each session, with 1-3 sessions expected to collect the 200-300 million stem cells they want. We got home at 6:30. I go back tomorrow afternoon at 1. If all goes well, they'll collect enough early enough this week to admit me to begin the treatment and transplant procedure before the end of the week. Red jello will be Valentine's Day supper. Al is typing this to keep me from having to get out my comfortable chair (she must think I'll make lots of typpos). Thanks to everyone for being there.

Mobilization

2005-02-11T10:36:00.000-08:00

That's the term my OHSU nurse-coordinator is using -- mobilization. We started last night with injections of a growth hormone to kick my stem cells into high gear. We'll do those for 4 nights, ending Sunday. Monday we report to OHSU where they'll (hopefully) check my blood, implant a special line for harvesting the stem cells, and start the harvesting process that afternoon. Within a day or so after harvesting/collection is complete, I'll be admitted to start the high-dose chemotherapy, then the stem cell transplant. After that, hopefully, it will just be time, healing and therapy before I start feeling better.

Mostly I am feeling OK. Tired, and fighting off a consistent afternoon fever that has all of us baffled. My appetite continues to wane and Al is going all over town trying to find things to tempt me. What makes it harder is that what tempts me today may make me nauseous again tomorrow -- or an hour from now -- so it's a struggle that never ends. I've now lost about 75 pounds, but this is not a diet I recommend for anyone!

Thanks once again for all the cards and notes, and thanks for understanding when I don't answer each one. I appreciate them more than you know.

Thanks for being there.

Overload

2005-02-07T09:20:00.000-08:00

There are a whole bunch of you who have sent me private messages, cards and letters deserving of responses. I'm way behind, and I apologize. Please know that I'm deeply appreciative, I just can't keep up with all of you when my energy level is this low. I hope that changes at some point in this process!

This week is test week -- PET scan, CT scan, Pulmonary Function Test, more blood tests. Thursday I will begin "mobilization" again for the transplant, begun once but aborted when we worried about an infection and low blood pressure. Wednesday we will pick up injections which will be given night and morning to stimulate the growth of my stem cells. The hope is that we can actually start the "collection" process next Monday, and possibly admit me to the hospital for the actual transplant procedure later that week. So things are definitely happening quickly now. Cross your fingers and say a prayer, because I'm really ready to get this process moving and get healthy again!

Thanks for being there.

Time Out

2005-01-31T15:49:00.000-08:00

One thing I'm learning as I progress through cancer is how little control I have over my body.

I showed up on time for my appointment today, but things started out pretty strangely when the technician was checking my vitals, looked at me, and said "yeah, you're breathing, but you've got no blood pressure." It was, at the time, 77 over something. They took me back to the Infusion Room, where chemo and other IV drugs are administered, and gave me two liters of saline solution to try to bring it up, but couldn't get any higher than 80. They were also concerned about some chilling I was having, even though my temperature was only 99.4. Bottom line is that they are worried that I might have a low-grade infection of some sort, so they did a blood culture and filled me full of IV antibiotics. I'll go to my own clinic tomorrow to have another culture run and another dose of antibiotics administered. We'll do this every 24 hours until there is no sign of infection.

In the meantime, stem cell collection is on hold for at least two weeks until my body recovers. While I have to admit that I'm looking forward to getting some strength back before pushing forward, I was looking forward to proactive steps. It's hard to feel proactive stretched out in my easy chair with a book, and yet I know that's what's best for now.

I'll keep you posted. Thanks for being there.

Phase Two

2005-01-29T07:37:00.000-08:00

If everything up to now can be labeled phase 1, then phase 2 begins Monday. My blood counts aren't "quite" there yet, but my nurse coordinator is pretty sure they will be by Monday.

On Monday at 8:00 a.m. I'll report to OHSU and have yet more blood drawn and some platelets transfused to make sure everything looks good. Then they'll escort me to a day surgery room where I'll have very b rief surgery to implant a special collection line in the side of my neck/shoulder. Then they'll escort me to the Aphoresis Unit, where they'll hook me up to the magic machine which will collect the stem cells out of my blood. It should take 3-4 hours. If they get enough, that will be that and they'll take the temporary line back out. If they don't (and they almost never do the first day), they'll wrap me up and Al will take me home.

The only good thing about the day is that it is another step forward. Otherwise I am envisioning a pretty uncomfortable day.

Once collection is done I'll have a couple of weeks "off" during which they'll run a bunch more tests to make sure I'm ready for the transplant process. I was originally scheduled to be admitted on February 7, but now it looks like that will happen sometime the week of February 14. I should be in the hospital 2-3 weeks.

Either Al or I will post "hospital protocols" soon, but the important thing to know is that from here on out I can't have any flowers or plants or dried flowers or plants or anything resembling flowers or plants because of the dust and germ factor. Not here at home, and not at the hospital. Balloons, cards, new books or magazines are OK because they can be wiped down.

More later -- time for a cup of tea!

Thanks for being there --
-- Terrie

THe Hurrieder I go ---

2005-01-24T10:50:00.000-08:00

I've gotten a o0uple of emails in the last few days wodering where I've been, and maybe it is time to turn over blogging duties to Al. I brought up the possibility with him this morning, and he's quite willing, and as we continue down this path we may need to do that. Not yet, though. He's got a pretty full plate.

I began daily blood tests last Wednesday which revealed, as my nurse coordinator said so delicately, that my numbers were in the toilet. I had two units of blood and one of platelets on Thursdaty. Last night I got aother unit of platelets. I got a blood test this morning and we're kind of waiting to see what this one says.

Posts will likely be short for the next couple of weeks. That's literally all I have energy for. But I'm here!

Thanks for being there.

Love -- Terrie

Wipeout City

2005-01-14T13:57:00.000-08:00

Well, between three days of chemo earlier this week and a combination of new drugs they've given me to try to counteract the post-chemo nausea, I've been completely wiped out this week. I sleep for about six hours at night, wake up, see Al off to work, and then sleep for another five or six hours!

This morning we started the high doses of Neupogen which are meant to "rev up" both my white blood cell count and the stem cell count in preparation for "collection." They've warned me that the high dose will likely cause some pain in my larger bones, especially the spine and pelvis, so they've set me up with a strong pain killer if I need it. That's going to make me even more lively. I'm hoping I can make due with just Tylenol, but it's good to know I have an alternative if it gets bad. Al will administer the Neupogen injections every morning. On next Thursday we will begin daily blood tests as well, and hence daily conversations with Trish, my nurse-coordinator at OHSU. As soon as the daily blood tests show that my white blood count has reached 10,000 I will report the very next day for stem cell collection. So, so far we are on schedule.

I continue to be very, very weak. I've been trying to increase my activity level even a little, knowing that the stronger I am when I go in for the transplant, the smoother my recovery will be. But it's pretty hard when my daily ration of energy seems to be used up after making my wobbly way to the kitchen for a bottle of Ensure for lunch! I should be a little better after the weekend, at least that's what the pharmacist must think since that's the length of time they have me taking the strong anti-nausea drugs.

Thanks for being there.

Timing

2005-01-08T07:53:00.000-08:00

I met with both my regular Kaiser oncologist and the staff at OHSU this past week. The timing on what happens next is becoming more clear to me.

This Monday (the 10th) I'll start what they call "mobilization chemo," which will be my last cycle of chemo prior to hospitalization. I'll be there Mon-Tues-Wed for about 6 hours each day. On Thursday I'll start post-chemo doses of Neupogen, which boosts my white blood cell count to counteract the effects of the chemo, which kills the bone marrow. I've had Neupogen before, after every chemo cycle, but this time they'll put me on a double dose because it also builds up stem cells. Seven days after I start the injections (which Al, brave soul, will give me at home) I'll start going for daily blood tests. I'll have the tests done at Kaiser, and they will fax the results to OHSU. When the counts show that my white blood count has reached 10,000 or greater, I'll go to OHSU the next day and they'll start harvesting my stem cells. That process takes 2-5 days of 3-4 hour sessions.

After harvesting/collecting my stem cells they give me a two-week "respite," during which time I'll have some additional pre-transplant tests run, but mostly my job during that two weeks is to rest and recover. I'm tentatively scheduled to be admitted for the transplant on February 7. That date could change depending on how quickly it takes for my blood counts to rise post-chemo, how long it takes them to collect the number of stem cells they need, and how many tests they'll need to run during my two-week "respite," but that's the ballpark date. Assuming all goes well, I'll be in the hospital for about two weeks (although it could stretch into a longer stay if I should develop an infection or other complications). I'll talk about what happens during the hospitalization/transplantation in a later post.

That's what we know for now. This has been a long week with multiple tests and procedures, and this weekend I hope to stay quiet and just build up strength for this final round of chemo.

Thanks for being there.

Another Transfusion in the Offing --

2005-01-05T16:50:00.000-08:00

Today was a long clinic day. I started with a bone marrow biopsy at 9:00. Now most of you have never had to endure a bone marrow biopsy, and I hope you never do. Although they are able to numb the skin, there currently isn't any way to numb bone, so you can definitely feel pressure on the bone and then intense pain when the needle gets into the marrow to collect the sample. Ouch and ouch again. I'm usually pretty stoic with all these tests and such, but this one hurt. Because the first one I had was even worse, back in April when I was diagnosed, this time they set me up right in the oncology clinic with my own doctor (as opposed to an intern in a cold and impersonal ambulatory care unit). She has done hundreds, so she was fast, as gentle as she could be, and compassionate. Still, I was glad to have it over.

I followed that with two rounds of blood tests: one done for slides in conjunction with the bone marrow biopsy, and one done for routine lab work to check my blood counts. After doing the second round the nurse also changed the dressing on my PICC line. After that I had to get a chest x-ray. Then we were done. Or so we thought.

Al dropped me off at home and went off to work. I got a call an hour or so later from my nurse coordinator saying that my hematocrit count was still pretty low and that they wanted to "buff me up" a little before chemo next week. So I'm scheduled for another blood transfusion tomorrow (Thursday) at 8:00 p.m. That's going to get us out pretty late, maybe even as late as midnight, but I know it will boost my energy level and put me in better shape for chemo.

A couple of nights ago on the news they had an emergency posting from the Red Cross for three types of blood, including mine (O-Negative), saying that the local supply had dropped to a half-day. I suspect that's why my scheduled time for the transfusion is so late in the evening -- they probably have to space us out to make sure the supply keeps up with the demand. This might be a good time to remind everyone who is physically able to get to the Red Cross and donate as you can. You might not be directly helping me (unless you happen to have my blood type and live in Portland), but you'll be helping someone else just like me.

Thanks for being there.

Plugged In

2004-12-30T07:58:00.000-08:00

Yesterday I spent a couple of hours at Kaiser having a PICC line installed (a double lumen, Pamela, since you asked!). For those unfamiliar with PICCs, they are temporary medical catheters which are implanted in the arm (in my case) so that treatment providers do not have to "stick" me each time I need chemo, medication, a transfusion, or a blood draw. think of it as sort of a permanent IV port. Now, instead of getting stuck, they just sterilize the PICC and attach the IV. It will save much time and stress on both me and my treatment providers. I'll go today and have the dressing changed before my CT scan. After that it will need to be checked and the dressing changed every week, so I'll need to arrange that with my care providers.

Chemo, which was originally scheduled to begin January 5, has been postponed until January 10 so that I have time to get up to OHSU and meet with the doctor there one more time and sign some consent forms. I'll do that next week. Chemo is scheduled January 10-12. Starting January 13 I'll begin getting high doses of Neupogen every day. Seven days after I begin receiving the Neupogen injections I will start getting daily blood tests (thank heavens for the PICC!). When the blood tests show that my white blood cell count has reached over 10,000, OHSU will call me in and they will begin harvesting and storing stem cells from my blood. That should take 4-5 days of daily visits. The timing of what happens after that is still a little fuzzy to me, but it will either be another cycle of chemo or a short break before being admitted to OHSU for the stem cell transplant process. I'll be finding out more about that after we meet with my regular oncologist and we meet with the OHSU team, both of which whill happen next week.

Thanks for all the encouraging comments and support, everyone, both those posted here and those sent privately. I feel very fortunate to have such a great support network.

Thanks for being there, and Happy New Year!

Detail Work

2004-12-29T06:58:00.000-08:00

I've been wondering lately what people with this disease (or any other major, complex illness) do when they don't have a full grasp of the English language. Yesterday I must have made and received a dozen phone calls relating to my care and treatment, and sometimes decisions had to be made quickly over issues that are not necessarily easy to understand -- even if you DO speak English. For example, I called Tina, my transplant coordinator at Kaiser, to see if we could get some sort of medi-port line implanted on Thursday, when I go in for my CT scan, so we only have to make one trip. She agreed it was a good idea, called OHSU to make sure they would be able to use whatever line we had implanted for the preliminary transplant tests and maybe the stem cell "harvesting" process, and then called me back to say she had left instructions with the advice nurses to go ahead and schedule the implantation -- but to be sure and tell whoever did the implantation that I needed a "double lumen" PICC line, which has two lines implanted at one site instead of one, because that's what OHSU needs. She said it would be on my chart, but to tell them verbally just to make sure.

Then the advice nurse called me, after calling the Kaiser facility where my line will be implanted, to say that they couldn't get an appointment for Thursday so we'd have to do the implantation today (Wednesday). That's fine, it has to be done, even though it means two trips to the hospital (today for the PICC line and tomorrow for the CT scan), rather than one. But it messes up my blood test schedule, since I need to have a blood test on Thursday to see whether the platelets I had transfused on Monday are doing their job. Does that mean I still need to have a blood test on Thursday, or can I have it done today when they put the PICC line in? And, since I'm supposed to have blod tests every two weeks to monitor how the Procrit is doing, when should my next blood test be? And when do I need to have the dressing changed on the PICC line? Does it need to be done on Thursday when I go in for my CT scan (in which case I can have blood drawn then), or can it wait until next Wednesday when I go see my doctor?

In the midst of all of this I had a call from one of the nurses who oversees patients in clinical studies, which I did for my first round of chemo. She needs me to get a chest x-ray and some special blood work as part of the study follow-up. I'll need to take care of those when I go in to see my doctor next week.

At the end of the day yesterday my head was spinning, and I fear that when my in-laws called to check on me I was less than gracious because I couldn't believe the phone was ringing again. How do people without language skills handle all of this? I keep a notebook by the phone to write down instructions and questions and appointments until I get them all transferred to my planner. I'm reasonably intelligent, reasonably educated, and even for me it's a full-time job just managing the scheduling of my care and making sure I take the medications I need at the proper times. When I was venting all of this to Al after he came home from work he said that in the case of one of his colleagues she was handling all of the scheduling and sat in on all the doctor visits for/with her father, because he couldn't cope with it all. I hope it doesn't come to that with me.

Thanks for being there.

Who Knew?

2004-12-28T07:12:00.000-08:00

Every day seems to bring a new "first." Yesterday morning Al drove me out to the Kaiser Sunnyside Clinic in order for me to have a blood test to determine how I'm doing following the last round of chemo and 9 injections of Neupogen. I had a call later in the morning from one of the Kaiser advice nurses saying that my platelet count was dangerously low and I would probably need another transfusion. She asked me if I had any of the warning signs, such as bleeding gums, red dots, unexplained bruises, any bleeding problems at all. I answered negatively, except that I had noticed a tiny bit of blood when I blew my nose a couple of times. She said she would consult with a doctor and call me back. Sure enough, by late afternoon I had an appointment for 8:00 p.m. at the Kaiser Interstate Clinic for a platelet transfusion. She said, however, that it would only take about a half hour -- not the nearly 5-hour procedure that the blood transfusion had been. I called Al to warn him. He came home at his usual time, fixed us some supper, and had me out to the clinic with time to spare. The procedure itself was identical to the blood transfusion, except that the product they "dripped into me" was platelets instead of blood. I asked about this -- why it was that I didn't get platelets on Christmas Eve when I had the other transfusion -- and it was explained to me that when people donate blood the platelets are separated from the red and white blood cells to get the most use out of each donation. Most people who get transfusions don't need both platelets and red/white blood cells. Apparently my platelet count didn't drop until sometime over the weekend, after the Friday blood test and before the one on Monday, so I ended up with two transfusions.

It took a little longer than they had anticipated because the nurse had difficulty finding a "good" vein to put an IV in. I'm going to talk with my nurse coordinator about that today. Between the blood draws, transfusions, tests and chemotherapy, I'm running out of veins, and those which are left seem to run and hide pretty readily. They'll find one, clean the skin, try to insert the IV or needle and the vein will have disappeared. We were planning on putting in some sort of medi-port line for this purpose, but had thought we would wait until OHSU was ready to insert whatever line they will use for the stem cell transplant. I think we need to get something in sooner, rather than later, even if it is temporary.

Anyway, that's my report for today. I think that I can now rest quietly until time for my CT on Thursday. I hope so.

Thanks for being there.

Merry Christmas!

2004-12-25T05:05:00.000-08:00

Merry Christmas, everyone. I hope the day brings you joy and health and happiness. I hope the New Year brings us peace.

We spent Christmas Eve at the hospital, where I received my first blood transfusion as scheduled. I received two units, and the process took a little over five hours. Al dropped me off and made sure I was settled, then went off to finish the last of the grocery shopping. He called me to see how I was doing when he was done, and to see if he could bring me something for dinner. How many other couples shared pizza and juice in the hospital on Christmas Eve during a blood transfusion? It is not a holiday tradition we wish to repeat, but it is something we can laugh about.

The procedure went well. I had a small, private (curtained) room, complete with TV, and because it was Christmas Eve it was very quiet. The Emergency Room is nearby, but not close enough so that there were a lot of patients coming and going within my view or hearing.

I do feel a bit better today. My head is not throbbing as much, and I feel like there is a bit more strength in my legs. That's the transfusion helping with the anemia. Still, we will spend the day quietly.

I hope that those of you who are able will consider a visit to the Red Cross to make that all-important blood donation. Both of my units of blood came from the Red Cross. Donating is something you can do which directly benefits people like me who need occasional transfusions due to serious illness or injury. Give it some thought this holiday season.

Merry Christmas, and thanks for being there, everyone!

A Long Day

2004-12-24T07:20:00.000-08:00

I wrote a long, detailed post earlier this morning which seems to have self-destructed, and I don't have energy to re-create it. So I'll just hit the highlights.

I had a blood test yesterday morning that showed me to be both anemic (low red blood cell count) and neutropenic (low white blood cell count) in spite of the Neupogen and Procrit shots I've been getting. So I'm on the usual anti-infection protocols (house arrest, no unpeeled fresh fruits or vegetables, frequent hand washing, no crowds, no exposure to sick people, etc.). They want to do a blood transfusion, which is scheduled for today at 3:00. It will take 4-5 hours. Not really how I had planned to spend Christmas Eve, but it must be done. They say it will make me feel much better, which is good, because I've definitely not been at my best the last few days. I'll still be on "neutropenic alert," at least through Monday when I have my next blood test, but at least my energy level should go up a little.

Al and I also met yesterday with Dr. Jose Leis, who will be in charge of my case when I get my stem cell transplant. It looks like that will happen in February. I was very impressed with Dr. Leis, the clinic, and his staff. I feel in good hands. I have a bunch of tests and procedures I have to undergo between now and my next chemo session on January 5, but if they all go well I will be scheduled for stem cell harvesting (outpatient) after the January chemo cycle and the stem cell transplant (inpatient) will take place in February. It looks like I'll be in the hospital (OHSU) for 2-3 weeks, and then closely monitored on an outpatient basis for 3-4 weeks after that. It will, however, be a long recovery period before I will be ready to resume "normal life activities," so I'm not making any plans for anything remotely energetic until we see how things go.

Time for a cup of tea. Thanks for being there, everyone. Merry Christmas!

Monday

2004-12-20T10:36:00.000-08:00

We've made it to Monday, and Al is back at work after a weekend of tending to my wants and needs. I'm capable of doing everything for myself, but for those first few days after chemo my head throbs if I so much as walk to the kitchen and make a cup of tea or fill my water bottle, so although I resist being so dependent it is nice having someone do those things for me, as well as plan and fix meals. Last night he cooked his first pork tenderloin, complete with roasted garlic potatoes and Brussels sprouts! It was quite tasty. He is talking about making a roast for Christmas dinner, or maybe a ham. Either will also be "firsts" for him, but will be much welcome in our holiday plans.

Physically I think I'm beginning to bounce back from last week's chemo, although that's a relative term. I don't get woozy when I walk around the house, I'm sleeping a little better, and my head is a little more clear. The anti-nausea medication they give me works well, but it does pack a wallop and those first couple of days I'm really pretty out of it.

I will go for blood tests on Thursday and Monday to monitor my white blood cell counts. Al is giving me Neupogen injections in the evenings to help keep the counts from getting dangerously low, but even with the injections my counts really dropped during the last cycle and we were on high alert for the possibility of contracting any sort of infection -- including house arrest. That may well happen again this time, and if it does we'll deal with it as we have in the past. It doesn't really change my daily habits all that much, since I stay home and quiet anyway, but this week we have an appointment with a consulting doctor at OHSU on Thursday and, well, Christmas coming up, so it would be nice to have the freedom to leave the house should we choose to do that.

In the meantime, my job once again is to stay quiet and have long talks with my body about recovering from this last round of chemo and preparing for the next one, now scheduled for January 5. Perhaps that will be the last for now? We'll have a better idea after the December 30 CT scan.

Thanks for being there, everyone.

Second Cycle of Chemo

2004-12-16T06:57:00.000-08:00

I'm getting ready to head off to day three of my second cycle of chemo. Days one and two went well, although the days are very long when I sit there for five to six hours, not counting any meetings with doctors or the pre-chemo lab tests I have to do every day. I messed up yesterday, though. I have one drug that is administered by IV during the afternoon, and then I take two doses by pill later in the day -- one two hours after the IV, one four hours after the IV. The fourth-hour dose comes around 7:00 p.m., and last night I simply forgot. I didn't even think about it until I got up this morning and saw them sitting here. Very bad! I'll tell them when I get there this morning, but I don't want to take them now and mess up my dosage schedule for today. I think it's the first scheduled medication I've missed, so my record is good, but I feel horrible about it. Al says we'll set the timer tonight so it doesn't happen again.

Other than that, it has gone well. I am tired, but not nauseous. The morning coughing has diminished somewhat with this cycle, so maybe we're finally getting past that. The pre-chemo medications they are giving me seem to be working to minimize all side effects. So the hardest thing for me is just muddling through six hours a day of having an IV in my arm, reading, watching movies. Time goes slowly. Al drops me off in the morning and comes and gets me in the afternoon and brings me home, where I sit some more.

I did meet with my oncologist on Tuesday, day 1 of this cycle. She said that I appear to be doing well. She has scheduled me for a CT scan on December 30 to see whether or not the cancer is responding to this chemo. I am scheduled to start the next cycle on January 5. I will meet with her then, and we will determine whether that will be my last cycle before the stem cell transplant, or whether I will have one more cycle first. I also meet with the OHSU doctor on the 23rd, the doctor who will actually be doing the transplant, so we will have an opportunity to ask lots of questions then.

Time to go make my cup of tea. I will likely be quiet for a couple of days as I recover from this cycle. I just wanted everyone to know that it is underway and that all is well.

Thanks for being there.

The Queen of Sheen

2004-12-06T14:59:00.000-08:00

Each day a bit more hair falls out, and it's definitely thinning. I wear a fleece over shirt most days, because it is warm and cozy, but it's a magnet for my little bits of hair so I've taken to wearing a scarf during the day to keep it contained and off my collar.

The other interesting side effect I've had over the last couple of days is something called Lhermitte's Sign. This is a side effect of both radiation and chemotherapy which I remember reading about early in the spring. They said it could show up months, or even a year, after treatment, so I can't be sure if it's a result of the first round of treatment or the current one. If I tip my chin down and turn my head at all, I get mild "electric shocks" down my spine and legs. It isn't painful at all, just very strange. I think it is temporary. I'll report it to my oncologist when I see her next Tuesday. I've been feeling a bit better otherwise, though, so I think they were right and my red blood cells are beginning to regenerate. I'm still very weak, but the pulsing in my head has definitely gotten better.

My friend Tracy sent me the URL for a "Luann" comic strip series which ran awhile back wherein Luann's friend Delta deals with Hodgkin's Lymphoma. I spent some time reading it this afternoon. It's very sensitively done, very true to life and will bring a smile to your face. Check it out at http://www.comics.com/comics/luann/html/cancer.html . I loved the bits about "the queen of sheen" and "sprouts" of hair! I can't believe the series was protested when it came out. Apparently some people didn't think cancer was an appropriate topic for a comic strip. It isn't anything to laugh about, for sure, but the strip did a great service by raising awareness of the disease and treatment. Thanks again, Tracy!

And thanks for being there, everyone.

P.S.: Robert, in my current state I'd have a hard time holding a tiara on my head unless I also borrowed a Marie Antoinette wig. I'll let you know if the proper occasion arises. :-)

Drat

2004-12-03T13:38:00.000-08:00

A couple of nights ago, while preparing for a shower, I put my hand to my head and came away with a small handful of hair. Drat. I was hoping my brand new, curly hair -- freshly grown after the first round of chemo -- would last at least until my stem cell transplant. I was wrong. It hasn't all come out, but it is definitely thinning, and will likely all come out after the next chemo session if it hasn't come out before then. Sigh.

On the brighter side, my white blood cell count is back in the "safe" zone, thanks to the Neupojen injections. That means my body is now producing enough white blood cells to fight off infections, and that's a very good thing. Unfortunately, my red blood cell count is still low and that's causing some symptoms of anemia, most notably generalized fatigue and a "throbbing" in my head. I called the clinic this morning and was advised that I have two alternatives: (1) I can come in now and have a transfusion, or (2) I can stay home, stay quiet, take medication when I need it, and see how it goes. They think I will start "rebounding" in the next few days and the counts should go up. I'm opting for the latter. If I'm still feeling bad on Monday they want me to go in for another blood test and we'll see what's happening with those pesky red blood cells. Apparently this is all quite normal for the kind of treatment I'm getting, but sometimes being normal is not all it's cracked up to be.

In the meantime, to celebrate the loss of my hair I have my eye on some hats I saw at Saturday Market (the local Portland weekend craft market) a couple of months ago. They are velvet, in jewel tones, with silver embroidery. Some of them are beaded. I think I may have to have one in case I get to go to my office holiday party next weekend. I don't know that being in the crowds and bustle of Saturday Market is in my best interest right now, and this particular vendor doesn't sell on-line, but I'll think of something!

Thanks for being there.

For Those Inclined to Research --

2004-12-01T09:40:00.000-08:00

First, HAPPY BIRTHDAY to my Dad, David Winniford, who turns 73 today. Happy Birthday, Dad!

I've been doing a bit of research to help me better understand the stem cell transplant procedure, and I've found some good information at OHSU's website. You can read about the procedure at http://www.ohsuhealth.com/htaz/blood/bone_marrow_transplantation.cfm . Warning -- this is heavy stuff. As I understand it, my procedure will be at the "less scary" end of how they describe the transplants in that I'll be donating my own stem cells, and they'll be harvesting them from the blood, not the bone marrow. Still, it's a serious and somewhat risky procedure and it's good to know as much as I can about it before I meet with the consulting doctor on December 23. I am glad that OHSU makes this kind of information available to the public, especially those of us who are considering/facing this kind of treatment, so that we can better prepare ourselves.

Other than that, my biggest problem these days is figuring out how to keep the darned squirrels from chewing through the clasp that holds the seed bins closed on our back deck. If they get that thing open they'll be in sunflower seed nirvana, and I think they know it. My solution so far has been to stay one step ahead of them -- make sure they have enough to eat without going hunting. We'll see how long that lasts!

Thanks for being there.

Slowly but Surely

2004-11-29T13:41:00.000-08:00

It's taking much longer to "bounce back" after this chemo than it did last time around. The last time around I had chemo every week, and although I was often tired on the evening of treatment, I was generally feeling pretty good by the next day. We're now ten days out from the first round of chemo on this second round, and I'm still struggling to get some strength back. Part of the problem is that the dose is so strong that it wiped out my white blood cells and my red blood cell count is low. Both can sap energy. I'm on Neupogen injections for a few more days to help with the white blood cell count, and we'll address the red blood cell count the next time I see my doctor.

I'm scheduled to meet with the doctor at OHSU for a consult on the stem cell transplant on December 23. This is just a consult -- a chance for him to meet me, and a chance for me to meet him and ask questions and see the facility. I wish it could all happen at Kaiser, where I'm familiar with the doctors and the facility, but they aren't equipped for transplants. My step-sister Kathy recently had major abdominal surgery at OHSU and has nothing but good to say about her care (although she said the food was not so great!), so although I am nervous about it, I expect it will go well.

Mostly I'm just tired. I've been reading a lot, and napping a lot, and watching LOTS of movies. I'm beginning to run out of Netflix choices, though. Time to go add more to my queue!

Thanks for being there.

Positive Thinking

2004-11-24T11:50:00.000-08:00

Like all cancer patients, I get constant encouragement to "think positive." Like all cancer patients, there are times when I want to reach out and slug the next person who reminds me how important it is to have a positive attitude.

I know how important it is. I've read the studies which show that people who have a positive outlook have a much better chance of success with their treatment and, in general, have an easier time with both the direct and side effects of the treatment itself.

But sometimes positive thoughts are hard to find. Sometimes you just want to scream and hit something and rail against God and say "Why Me??"

And then, when that's out of your system, you're back to positive thoughts. So it is with me, too. Just be patient with me if you happen to be the one who gets slugged screamed at. It'll be over quickly, I promise. And since I don't have much strength right now, it won't hurt for long.

I've had a couple of really fun calls and e-mails over the past couple of days. The first was an e-mail from a lady named Pamela who is on my Hodgkin's e-mail list and who has been through the whole stem cell transplant procedure. She lives in Portland, and when I am feeling better we will get together for coffee. It was wonderful to hear from her and know I have at least one person I can ask all the "what is it like" questions. She had her transplant done in Seattle, at the Fred Hutchinson Cancer Institute, but the procedure will be very similar to the one I will undergo here in Portland at OHSU. What's more, she has put me on a list of HD patients who have gone through this before -- and there are several. They apparently like to mail things to us newbies. Not big things, but things like puzzles and books. She said to be prepared for cheesy movies. So now I have yet another layer in my incredible support network.

Yesterday we also had a call from a high school classmate of ours. Ruthie and I were roommates for a year or so between the time I returned home to Juneau and the time I moved here to Portland to be with Al. We've known each other since I first moved to Juneau in the 6th grade. She has gotten back in touch with several of our school days crowd, and wanted our e-mail address so we could be included in the news. Some are still in Juneau, some have gone as far afield as Beijing. Hearing Ruthie's voice on the phone was medicinal, and having these people back in my life, however nebulously, is a gift. Ruthie, thanks for taking the time to track us down. And thanks for getting us all together, even if in cyberspace! To Greg, Melanie, Irl, Ruthie and Dani -- I'm so pleased!

I also had a call from my boss, just checking on me and seeing how I am feeling. I've been so fortunate to be working at this firm through this illness. They have gone above and beyond in their ongoing support of me, to a level which shows that they truly care about me as a friend and a person, not just a worker. I can't wait to return to work and begin to repay them!

Happy Thanksgiving from our household to all of yours. We will be celebrating on Friday, at the home of Al's brother Mark and his wife Debbie and their family, assuming I'm feeling well enough. I'm hoping I will be, because a little turkey and pie might just be what the doctor ordered!

Thanks for being there.

Monday

2004-11-22T08:29:00.000-08:00

Thanks once again for all the messages of support. Wow. What a great network of family and friends I've got!

OK, it was a tough weekend, but I think I've come through the worst of it. I slept better last night, and this morning woke up with no nausea. As Al reminds me, just because I'm feeling slightly better is not a license to do a bunch of things I'm not supposed to do, so I'll be continuing to spend my days very quietly with books and cats and movies.

Because I'm getting chemo in fairly high doses, one of the things we're worried about now is low white blood cell counts (the chemotherapy suppresses production of bone marrow, which produces white blood cells, which protect me from infections.) My doctor and pharmacist have started me on Neupojen injections, which Al very patiently and expertly administers every night before bed. But I'll have to have blood tests on both Friday and Monday, to make sure I'm not neutropenic (dangerously low white blood count). If that happens, we will need to go on "neutropenic alert" which means I'll stay home so that I'm limited in my contact with anyone who might have an infection, constant hand washing and anti-germ protocol, and temperature monitoring. In the meantime, though, it's the usual protocols -- and for me, at least for now, that means taking it slow and easy.

Thanks for being there.

We're Not in Kansas Anymore

2004-11-20T11:04:00.000-08:00

First, thanks very much to everyone who has sent words of support, both here on the blog and privately. I really do appreciate it.

I'm having a rougher time of it this time around. The chemo drugs they are giving me make me very weak and light headed, especially given three days in a row. The coughing has diminished, and the first two mornings I had no cough at all. Just a little one this morning. I'm still having some trouble breathing, though, and can only sleep on my right side or I can't catch my breath.

We had call the advice nurse this morning because I'm having a little bleeding from a hemmerhoid, and that's something they told me to guard against (bleeding) because it's important that my red and white blood cell counts do not drop. So we've sent Al to the store for supplies, and have "warning signs" to watch for the rest of the weekend. I should be fine.

Al reassures me that my only job this weekend is to relax and recover from the chemo, that I shouldn't feel guilty for sitting around. It's a good thing he keeps telling me that, because that's about all I have the energy to do.

Thanks for being there. I can't tell you how much it means to me. I've got the best support network in the world!

Bad News/Good News

2004-11-16T16:29:00.000-08:00

The bad news is that the PET and CT scans from last week do show active cancer growth in my chest.

The good news is that we have a plan to f ight it. I'll be starting another round of chemotherapy tomorrow, three days in a row. They'll be using different drugs than we used the first time. We'll do this three or four times (three days in a row every 21-28 days) until my oncologist determines that the cancer is knocked out. Once that happens, I'll be having a stem cell transplant, which will require hospitalization and some anxious, difficult weeks. But the prognosis is very good.

My worst fear was not that they would find cancer, because my body had already told me about that. My worst fear was that they'd send me home for more waiting. No more waiting. We're starting tomorrow, and we're going to beat this thing.

The treatment is more intense, so it is likely to have more intense side effects. I'll post as often as I can, but be patient with me if there are days when I just don't feel up to it.

Thanks for being there -- keep those prayers and good thoughts coming!

Test Week

2004-11-08T16:40:00.000-08:00

Today I had my PET scan. Although they are very nice at the imaging clinic, it's a long test (nearaly 40 minutes in the scanning machine) and there's only so much they can do to make it easier on me.

Tomorrow I will meet a new pulmonologist, my old one having left Kaiser to open up his own clinic. I'm scheduled for an ultrasound at 2:30 which will identify exactly where the pocket of fluid is in my right chest, and then I'll take the ultrasound picture up to the new pulmonologist, who will, we hope, drain the fluid. That should go a long way towards making me more comfortable.

Friday I have blood work and the CT scan scheduled. Next Tuesday, the 16th, Al and I will meet with my oncologist to find out what's going on. We're hoping for the best, preparing for the worst.

I've just finished Lisa Shaw-Brawley's "Only When I Sleep: My Family's Journey Through Cancer." Lisa kept a journal from the time she was diagnosed with Hodgkin's Disease until she was in remission and, shortly after, was able to conceive and bear a child. Although the course of our illnesses and treatment are very similar, how we chose to deal with it is very different. Lisa moved back in with her parents, along with her husband, and there were multiple family members at every chemotherapy treatment. When I was diagnosed I wanted no one around me but Al, I didn't even want to talk to people about it on the phone. I've done a similar thing with this second episode, if it is a second episode. Other than my two weeks back east, I've chosen to spend most of my time here at home. A dear friend has cautioned me against isolating myself, and I'm aware of the danger of doing that, but I don't see that happening. I just prefer solitude. I always have, and when I don't feel well that becomes even more true. Except for Al. Him I want around me all the time, and I'm not looking forward to his business trip to Phoenix this week, when he'll be gone from Wednesday through Sunday. I have friends lined up to take me to my appointments tomorrow and Friday, but I'll be glad when he's back home again.

So if you're one of the many who have offered to come visit, call me on the phone, or otherwise keep me company, and I've put you off, know that it isn't you. It's me. And I may very well need you at some point in the future. I know how to find you.

Thanks for being there.

Scans are Scheduled

2004-11-02T13:20:00.000-08:00

We finally have dates on the upcoming repeat scans. I'll have the PET on Monday the 8th, and the CT on Friday the 12th. I meet with my regular oncologist on Tuesday the 16th to learn the results. Two weeks from today.

As you can imagine, part of me is anxious to get the results, so that the waiting will be over, and part of me is very nervous because of the very real possibility that those results could show a recurrence of the cancer. I continue to be short of breath from the fluid in my lung, I continue to cough, I continue to feel fatigued and in general "not well." Yes, it is true that all of this could be due to the radiation treatment -- but what if it is not?

So I work on distractions. "High Tide at Haystack" stands at around 2300 words, and I'm pleased with it so far. I haven't done much on it today, but I have plenty of time to make up the word count deficit later. I've been enjoying the riches of a new book shipment from Powells, a gift from my good friend Robert who works there. It's cold and rainy here, and the wind is blowing -- it just seemed like a good day to curl up in my grandmother's quilt and invite Tyler to nap in my lap and keep it warm while I did some reading. Later, as the polls begin to close, I'll begin to watch the election results. I pray that America chooses a fresh start in January. I know that announcement might make me unpopular with my family, but there you have it.

Thanks for being there.

High Tide at Haystack

2004-10-27T11:08:00.000-07:00

So -- I think I'm feeling a little better. It's hard to tell whether the symptoms have abated somewhat, or whether I've simply learned to manage them better by staying quiet and taking the medication when I start to feel anything, but compared to last week I think I do feel better. The pain in my side is (maybe) not so intense, and the shortness of breath is (maybe) not so noticeable. Still, I've hardly left the house in four days, thus I haven't tested the level of my strength. I don't think I will, either. If my body is happiest just staying warm and quiet at home, I'll stay warm and quiet at home.

In an effort to distract my mind from my body I've signed up for National Novel Writing Month. This is an outrageous event where between November 1 and November 30, participants attempt to write a 50,000 word complete novel. The quality of the novel is irrelevant, the only important thing is to get it on paper. I've signed up (see http://www.nanowrimo.org) and have begun brainstorming my plot. In order to play by the rules I can't actually write anything until Monday, November 1, but I can outline the plot and get to know my characters. I've set my novel, which I envision as one of those tea-and-lace-curtains mysteries, in Cannon Beach, Oregon, where a group of eclectic birdwatchers have gone to see the annual return of the tufted puffins to Haystack Rock. Working title: "High Tide at Haystack."

I'm sure I could find a better use for my time, but then again, this will keep me fully occupied between now and the time my scans are repeated in mid-November, at which time I'll find out whether or not I (1) go back into treatment, or (2) go back to work! And who knows -- it might just turn out to be something someone might want to read someday.

Thanks for being there.

Good News - We Hope!

2004-10-22T14:14:00.000-07:00

My oncologist has called with the results of two days of tests. Everything looks good. There is a small nodule in my right lung and another in my liver, but they are very tiny (too small to safely biopsy) and the doctor believes that they are likely the result of the radiation treatment. The CT did confirm that there is fluid accumulating in my right lung, which is causing the pain and shortness of breath, but that, too, he believes is a result of the radiation. In his words, "there's not a doctor in the world who would tell you that a nodule in the lung and a nodule in the liver could both be related to Hodgkin's Disease." His recommendation -- stay quiet, try not to worry, and continue to wait until the PET and CT are repeated in November. He will treat the pain, and if the shortness of breath gets worse he will set me up with a pulmonologist and have it drained. He doesn't want to do that until it is necessary.

So -- here I sit. Still waiting, and still uncomfortable, but with reason to hope that maybe things are not as bad as I had feared earlier this week. I just wish I felt better. Maybe now that I'm home and quiet that, too, will improve. Tyler and Tuxedo seem to think I don't take nearly as many naps as I ought to!

Thanks for being there.

More Waiting

2004-10-21T13:49:00.000-07:00

I saw the oncologist this morning. As luck would have it, my regular oncologist is out on maternity leave and the back-up oncologist I'm assigned to left for Australia today, so I saw a new guy. I liked him very much. He believes that my symptoms could well be residual effects from the radiation and side effects from the chemo drug Bleomycin, which can cause lung damage. He had some blood drawn today and I'll have a CT done tomorrow, so hopefully by the end of the day tomorrow (Friday) we'll have some preliminary results. I'm torn between wanting to believe this isn't a recurrence and feeling certain that my body is telling me that it is. All we can do is continue to wait -- to hope for the best and prepare for the worst.

Thanks for being there.

Home Again --

2004-10-20T13:10:00.000-07:00

I'm back home. My trip to New England was a welcome, wonderful respite.

I called my clinic this morning to report the symptoms I've been experiencing -- shortness of breath, chronic cough, an odd pain in my lower right abdomen, blurred vision (once a week or so), and a decrease in my appetite. I wanted an appointment early next week. They wanted me to come in today. We compromised on an appointment for tomorrow. I don't expect I'll actually learn anything tomorrow, but they will probably order a round of tests so that we can begin to get to the bottom of whatever is going on. I'm scared, of course, but also feel very certain that the break I had in New England has made me better able to face whatever it is that I'll be dealing with next.

Keep the good thoughts, prayers, and cheers headed this way. I'll keep you posted. And thanks for being there.

New Hampshire!

2004-10-14T07:19:00.000-07:00

On Sunday I made the shift from Massachusetts to New Hampshire, and I'm now settled in at the home of my friend Marilyn in the booming metropolis of Francestown (population 1100). We've been taking a slow pace, never pushing my energy level further than I'm comfortable going. I think the only even planned for today is a drive to the Molly Stark Tavern for lunch. As I understand it, Molly Stark was the wife of a Revolutionary commander, and his wife was quite popular with his regiment. They named their cannon "The Molly Stark," and the Cannon is now in a museum in New Boston, which is the nearest town of any size.

Yesterday we drove north to Woodstock, Vermont to enjoy the turning leaves along the way and to tour the King Arthur Flour Company factory store and some of the shops in Woodstock. I purchased a silicone pastry brush I had seen in the KAFC catalog, which will be useful for baklava and bourek, and one bread mix to make when I get home. I also got a sweatshirt in Woodstock, because the weather has turned decidedly chilly and in spite of my voluminous luggage I don't seem to have brought enough warm clothes.

Symptom-wise little has changed, except that I get more tired more easily and sometimes I do feel a little shortness of breath. The "stitch" in my right side remains and continues to worry me, especially at night, but it does not seem to be getting worse. My nose has been more drippy and my eyes have been a bit sore and tired, but that could be attributed to the fact that my hostess smokes. I'll make more of an effort to stay near fresh air today and see if that helps.

Thanks for being there.

Still Here --

2004-10-09T08:12:00.000-07:00

I'm still in Massachusetts, and having a great time. On Wednesday our friend Kathy drove up from Connecticut and we went for a walk at the Great Meadows National Wildlife Refuge near Concord and then had lunch at the Olde Colonial Inn, where pictures of George Washington gazed down on us as we ate. On Thursday we met our friend Dixie and had lobster lunch at Plymouth Harbor. The sense of history here is so much different than on the west coast! Yesterday our friend Marilyn drove down from New Hampshire for a medical appontment, so we had a brief visit with her. She will be coming back tomorrow and will take me home with her for my second week of visiting.

I continue to over-analyze every symptom I experience, and admit to some concern over a "catch" in my right side, near my ribs. It could be something as simple as a pulled muscle, but I worry that maybe it is the beginnings of fluid accumulating in my chest again, as it did when I first began treatment in April. But I'm experiencing no shortness of breath, which accompanied the fluid last spring, so at this point I'm just staying watchful and trying not to over-worry. It is what it is, whatever it is, and unless it gets more serious I will just be cautious.

In the meantime, my host is downstairs practicing Brahams and Chopin on the piano, and the sun is just beginning to peek through the turning autumn leaves. It is a beautiful day and life is good.

Thanks for being there.

New England Spa

2004-10-06T14:50:00.000-07:00

Do you remember all those old novels where, after a character had been ill, they were sent to the country to recover their strength? That's the way I feel. I'm here in Weston, Massachusetts (near Boston) visiting friends who are taking excellent care of me. The weather is crisp and clear, and it looks and feels and smells just as you would imagine New England should look and feel and smell in the autumn. I arrived Monday evening after an uneventful flight east, and have been pampered from the beginning. I am certain I will go home healthier and stronger than when I arrived -- and probably plumper, since I'm being fed extremely well. Although I thought and rethought the wisdom of making this trip at this time, I'm certain now that it was a good idea.

I'll be here in Massachusetts until Sunday, then will migrate north to New Hampshire to another friend for the second week of my "New England Spa" visit. I'll keep you posted as I can. Thanks for being there.

Waiting, Week 1

2004-09-28T15:39:00.000-07:00

Having the trip to New England to plan has gone a long way towards taking my mind off of whether or not those November scans are going to confirm a recurrence. Today I called United Airlines to verify my flights and get seat assignments, talked with the owner of the bed and breakfast in Montpelier where Marilyn and I will stay the night of Barb's MA celebration at Vermont College, and began making lists of things I need to do before I leave (buy chocolate and Italian artichokes, make a stop at Powells for reading material for the plane, etc.). It is good to keep my mind so focused, because during the quiet times I do start the wondering and worrying again. This morning there was a small patch of red skin on the inside of my left elbow. Is that a Hodgkin's symptom, or simply a bit of irritated skin? I took a walk to the grocery store and seemed a little more tired than usual. Am I getting weaker instead of stronger, or is it just because I didn't sleep well last night?

My oncologist (gosh, I hope she's had her baby by now!) told me the last time I saw her that it will probably be a month before my throat stops feeling scratchy and my voice returns to normal, and it could be six months before my energy level returns and my knees don't feel so wobbly. That's hard for me to remember when I'm sitting here at the computer, because I feel just fine, it's only when I walk or otherwise exert myself that I'm reminded of the ordeal my body has gone through. So even if those scans in November turn out to be negative, and I really hope that they do, maybe it is a good thing that I postponed grad school for this semester. As my niece reminded me in an e-mail yesterday, grad school will be there when I'm ready. Of course that's easy for her to say, she was smart enough to get her MA degree when she was in her 20's, not wait to start until she was in her 40's, like me!

I've been thinking a lot about the quote I posted yesterday, and it becomes more meaningful the more I think about it. None of us know what the future has in store, or how long we have on this earth. I need to remind myself of that, and not get so caught up in worrying about the future that I forget to Live today.

Thanks for being there.

The Rest of Our Lives

2004-09-27T13:53:00.000-07:00

I'm on an e-mail list for Hodgkin's patients, survivors, caregivers and families. Someone posted a quote there today from a breast cancer survivor that I thought was very moving:

"I think of the ridiculous statement, 'You have your whole life ahead of you.' This is never true. At any time, what you have is the *rest* of your life. Short or long, in shadow or light, you might as well live it as passionately as you can."
--Julia Glass

Isn't that wonderful? I have been thinking about it all morning, and had to share it with you.

Lobsters and Clams With My Name on Them

2004-09-26T15:25:00.000-07:00

One of the hardest things for me to accept when I got news of the possible recurrence was cancelling my trip east for colloquium at Vermont College. I have worked so hard to get my BA, and starting my MA studies was very much symbolic of my recovery. To put that on hold hurts, but there's really no other wise course of action because it does not make sense to start the semester in October and then have to withdraw in November if the recurrence is confirmed.

But I was convinced by friends and family that although I can't register for the semester, I can still make the trip east. It would be good for me to get away from home, and I've got invitations from friends in New Hampshire and Massachusetts who are anxious for me to spend time with them and who have promised a stress-free environment where I can continue my recovery accompanied by fresh lobster and clams at regular intervals.

So the trip east is back on. I will need to be on my guard against wearing myself out, and I will need to be careful about not exposing myself to anything which might compromise my immune system, but that should be easy to accomplish with such willing and gracious hosts. Being away from home and away from Al for two weeks will be hard, but it will give him a break from worrying about me and having to deal with my e-mailed shopping lists -- although he does so happily.

I feel fortunate to be heading east at a time when the fall colors will be at their height. I am telling people that I'm going leaf peeping at a rather exclusive spa where I will receive the best sort of pampering, and that's true! I have no doubt I will come home relaxed and that much further along in my recovery.

Waiting, Day 3

2004-09-24T09:16:00.000-07:00

One of the things that is becoming clearer as we begin crossing the days off the calendar is how difficult the waiting is going to be. I find myself second guessing every symptom my body exhibits. Isn't my cough better than it was last week at this time? Does that mean anything? Is it good that my temperature remains normal? How am I sleeping? Am I feeling any swollen glands? Night sweats, swollen lymph nodes, itchy patches of skin -- those are all symptoms of Hodgkin's, and I'm constantly mentally scanning my body to see if any of those signs are there. So far, there are none. My hair is growing back, my energy level is increasing, I can breathe deeply without any sign of fluid in my chest (a big problem in the spring when I was diagnosed, and before I began treatment). In fact, my only symptoms right now are the "radiation burn" on my neck leftover from the radiation treatment, and a scratchy throat which makes my voice sound hoarse, both of which are healing (although more slowly than I would wish).

So I'm doing what I can to continue the healing and recovery process while waiting out the six weeks between now and the repeat scans. I'm trying to get plenty of rest, I'm eating well, taking vitamins, drinking lots of water. I crave normalcy, but I suspect that nothing is going to feel normal until after the scans are repeated and, hopefully, I can put this behind me.

Thanks for all the messages of support. We've determined that when I respond to anonymous posts from my e-mail box, which I have, they don't actually go to the sender. They go to some big anonymous box, the location of which is a mystery to me. But know that I've read every comment, and I appreciate them all -- and you all -- very much!

Stem Cell Donations

2004-09-22T18:05:00.000-07:00

When news of my possible recurrence became public and I mentioned that a possible course of treatment was a stem cell transplant, a number of you contacted me to ask whether or not you would qualify as donors. with Hodgkin's Lymphoma the first preference is always to do "self donations," which means the stem cells would be harvested from my own blood, but in some cases that isn't possible. Hopefully it won't be necessary for me at all, but even if it is not, there are millions of other patients out there who are in need of either stem cell or bone marrow transplants to aid in their treatment and recovery. You can learn the ABC's of how to be tested and become a donor at the National Marrow Donor Program's website. I've added their link to the sidebar at the right side of this journal page. If you're eligible to become a donor, I urge you to educate yourself on what's involved, become tested and get on the donor registry. Someone out there needs you desperately!

Waiting, Day 1

2004-09-22T07:58:00.000-07:00

First and most important, thanks to everyone for the many messages of support, both those posted here and those sent privately to me. One of the reasons I have survived this ordeal in as good shape as I have is because of the incredible support network that I have in my family and friends. You are all wonderful.

Speaking of comments, I've got a question for those of you who may be more experienced at these blogs than I am. I get copies of all comments in my e-mail box. When I respond to an anonymous comment from my e-mail box, does the person who posted it get a copy of the response? It looks to me like it goes to some anonymous box, and if that's the case, I'll stop responding.

Yesterday, in order to get away from the phone and process the news and the possibilities we face, Al and I ran away from home for a little while and went to Fern Hill Wetlands in Forest Grove, west of Portland. Fern Hill is one of the local "hot spots" for birdwatching during the fall migration, and recent posts to the Oregon Birders On-Line e-mail list had indicated a Lapland Longspur had been sighted there, along with lots of interesting shorebirds. We didn't see the Longspur, which has apparently moved on, but it was a beautiful day and we did see three different sandpipers, a Greate Egret, a Blue Heron and a Green Heron in addition to kingfishers, chickadees, and the usual crowd of sparrows and wrens. I'm not enough of a "lister" to be disappointed when we don't see a particular bird we were hoping to see, I still get much pleasure just being outdoors on a beautiful day enjoying beautiful birds.

At my feeders the first Dark-Eyed Juncos and Golden-Crowned Sparrows have arrived for the winter, and the American Goldfinch flock has swollen to a couple of dozen hungry, nyjer-gobbling machines. Cedar Waxwings are grazing for laurel berries along the back hedge, the lovely Anna's Hummingbirds are still coming to the nectar feeder (as they will all winter here in western Oregon) and Bushtits come regularly to the suet feeder, amusing Tyler and Tuxedo, our cats, who watch and listen through the windows. In the natural world life goes on as normal, with no concern for human worries. So, too, will I need to walk day-by-day until we can repeat the scans and know with more certainty what lies ahead.

Today Al has returned to work and I have on my agenda the not very pleasant task of notifying Vermont College that I will be deferring my admission until the April semester. I will study independently until then. Postponing my studies is perhaps the biggest disappointment in all of this, but hopefully it will be just that -- a postponement.

Thanks for being there.

Backpedaling

2004-09-21T16:06:00.000-07:00

My oncologist called again late this morning. She has not felt "right" about the recurrence diagnosis, and said she actually dreamed about me last night. This morning she consulted with another oncologist, the radiation oncologist who did my radiation treatment, a pulmonologist, and the nuclear medicine doctor who read my PET scan. All are in agreement that having a recurrence this soon, and in an area where there was active radiation within days of the scan, would be very unusual. Not impossible, but unusual. The other likely possibilities are an infection of some kind, or an inflammatory process left over from the radiation treatment.

The only way to know 100% for sure what we're dealing with is to do a biopsy. The pulmonologist says that the swollen lymph node they identified on the CT scan is in an area where they do not feel they can guarantee a successful biopsy, because it is in an area that is relatively inaccessible, and since we're talking about major surgery with general anesthesia, they don't want to risk going in for a biopsy if it won't be successful. So --

They're recommending we wait 6 weeks and repeat the scans. If it is an infection, I'm going to know before then because the usual signs of infection will show -- fever, etc. I'll be monitoring my temperature to check for that. If it is an inflammatory process, it will likely heal it self before the scans are re-done. And if it is a recurrence of cancer, the disease will progress and it will be more obvious and easier to biopsy.

Waiting is very hard, but it seems to be the only good option. My doctor has recommended that I continue the plan of not flying east and not starting grad school, because there is still the very real chance that the cancer is back, and if that's the case we'll need to begin treatment as soon as possible. It would not be good for that to happen two or three weeks after beginning a new semester, so the better part of wisdom is to postpone admission for a semester and hope to begin in April. By then we'll know, and even if it is a recurrence, hopefully we will have treated and cured it by then.

My appointment is scheduled for November 16, with the repeat scans to happen sometime the week prior to that. In the meantime, we wait, and we pray. I will be continuing to post. Thanks for being there.

Recurrence

2004-09-21T05:56:00.000-07:00

I was diagnosed with Stage IIIB Hodgkin's Disease in April, 2004, just in time for me to miss my graduation from Vermont College, where I had just completed my BA in environmental writing. Instead of graduation, I began a course of treatment for the disease. I opted to participate in a clinical study comparing the ABVD and Stanford V treatment modalities, with my particular course of treatment being the Stanford V. I underwent 12 weeks of chemotherapy followed by 20 sessions (4 weeks) of radiation treatment.

While my treatment was progressing, I applied for and was accepted to Vermont College's MA program, where I intend to continue my studies in environmental writing/ecocriticism. I was scheduled to begin the MA program with the October term, and had already purchased my ticket to fly east for colloquium at the Montpelier campus.

I completed my radiation treatment on Monday, September 13. I had post-radiation CT and PET scans on September 15 and 17. On Monday, September 20, I returned to see my oncologist, who said that there were slight anomalies in my CT scan and bloodwork from the week before. The PET results were not in yet, but were expected that afternoon. She said she did not anticipate any problems, but that she would call me with the results.

Al stayed off of work to be with me. At 3:00 my oncologist called us, and told us that the PET did show a recurrence of the cancer, and to outline the next course of action. The first thing we'll have to do is get a biopsy of one of the enlarged lymph nodes, probably a bronchioscopy, so that they can confirm the recurrence. My oncologist will be talking with a pulmonologist to determine the best option for the biopsy, and then will look at treatment options and call me back by the end of the week to schedule the biopsy and talk about treatment. The most likely course of action will be another round of chemotherapy followed by a stem cell transplant. I asked her about my October trip east, and she said she did not think it would be wise for me to travel, nor would it be wise to start graduate school. My focus now needs to be on the treatment and healing.

Numbly, I notified my east coast hostesses in Boston and New Hampshire that I would not be visiting them before the Montpelier colloquium as we had planned, and began the task of notifying my family and friends of this new challenge in my life. Al went to his office and checked out a laptop computer so he can spend today working from home so that I will not need to spend the day alone as I adjust to the news. Later today I will notify Vermont College that my admission will need to be deferred, and I will notify the airline that I'll be cancelling my ticket.

I'm angry, and horribly disappointed, but resigned. I've got an incredible support network of friends and family, and I'll get through this. It's going to take a little longer than we had planned, but I'll get through it and will continue with graduate school and my other life plans when the time is right.

I'll be using this blog to keep my friends and family updated on my treatment. It will save me from forgetting to include someone on an email, and will ensure that everyone is getting the same information. Feel free to leave comments, I'll get them. And thanks for being there!