The Assertive Cancer Patient

Wrapped in Love

I try not to get mushy--and it's not really my style--but after yesterday's post about the three wise doctors, and the response to it both from friends and loved ones in the real world as well as from my readers ... Well, I feel wrapped in love. 

And quite invincible.

So thank you. 

Not online much today, but I will try to respond to e-mails in a timely fashion. 

Younger Son and The Amazing Martha are teaming up to wash the outside windows for me today--which have not been done in a year and which are BOTHERING me. 

I am going to the post office to mail all my late jewelry orders, and this evening a group of us are going to see The Belle of Amhurst, partly because Younger Son and Megan, who is going, are both theater kids, and also as part of my newly revived interest in the classics. 

As you see, life rumbles on, but with intention and attention. 

@ Jeanne Sather 2010. 

Three Out of Three Doctors Agree ...

Over the past week, I've talked with the three oncologists who are central to my care--Dr. Doug Lee, Dr. Steve Eulau, and Dr. Brian Lee--and the three of them agree: I can expect to live at least another year! 

Now, if you don't have cancer, or you don't have metastatic cancer, that may sound like bad news to you. A death sentence, as it were. 

But, if you have metastatic or incurable cancer, as I do, and especially if you have lived with it for a long time, as I have, you will understand. And of course those of you who have lived with cancer in the family are going to get this one. 

So, what does this mean to me?

It's not a guarantee, or a promise. Things could always go south at any time, and I understand that. 

I have to carry on with treatment and I have to stay on top of what is happening with my body without letting it drive me crazy or into a spiral of anxiety.

I can do this. 

It also means that Younger Son can fly off to Japan with a light heart, knowing he is not likely to be 

called back to my deathbed anytime soon. And Older Son can carry on at home with a lighter heart, knowing he will not be carrying the burden alone in the immediate future.

For me, it is yet again, a choice. A choice that grew out of the greed for life I began to feel this summer as I started to feel better physically, even though my cancer was advancing. I am willing, yet again, to fight. 

This is incredible news. I felt it, of course, which is why I asked my doctors to weigh in. When the third one, Dr. Eulau, and I talked about it yesterday, I cried. I don't cry very often, but good news makes me cry. 

The plan for the day: I will be off-line for the rest of the day, probably lounging on the front porch enjoying my garden and reading Dickens (A Tale of Two Cities). I will check e-mail again this evening, but probably won't reply until tomorrow, as I am rather exhausted, physically. But my spirits are dancing in the treetops. 

 @ Jeanne Sather 2010. 

Gratitude

The events of the past week, which I'll list in a moment, were enough to put me over the edge--right up there with the day I first found out that I had cancer and the day I found out my cancer had metastasized to my bones. 

But they didn't, and that is what this post is all about. 

During the past week or two, I've had to face:

The death of my uncle, my mother's younger brother. His funeral was last Friday, the day I was scheduled for surgery.

Also during the past week, I received an e-mail from my ex-husband, Kazuhiro Babe, who abandoned Older Son 14 years ago. Kazuhiro made an outrageous request of me which I am not prepared to grant. 

Then there was Friday's surgery, to place four gold seeds in the bones of my sacrum so that Cyberknife Guy can work his magic and save me from paralysis and a wheelchair.

And of course there is the news from just a few weeks back that--despite my declining tumor markers--my cancer was off and running, putting me in fairly serious danger. (See: Bad News) 

The problem with the family funeral, in addition to my sadness over the loss of my uncle and my sorrow for his daughter, my cousin, who is an only child, is that I knew my mother would be there and I haven't seen my mother in more than 11 years. 

We are estranged, and that was my choice. So what to do about the funeral? I wanted to go, but I didn't want to be in the same room as my mother. 

Solution? Older Son went to represent our branch of the family, and did so very ably, despite my mother making a horrific scene. Younger Son did his part by going with me to the hospital as my body guard and hanging out all day long while I had my procedure. (See: A Day on Surgery Time) 

The surgery itself was nothing much, although I am afraid of anesthesia, and I was a tiny bit afraid that the nerve damage might get worse as a result of the procedure. However, I removed the band-aids this morning and found tiny spots of blood--I mean tiny--plus minimal bruising (bruises of less than half an inch across in each of the four spots), and that's it. 

I was in some pain over the weekend, but nothing that a few drugs and a regimen of alternating heat and cold couldn't cope with. 

So why am I not lying on the floor in a puddle of gooey emotions? 

That's where the gratitude part comes in. If it were not for my therapist of 12 years, I would be lying in that puddle. But with what she has taught me, I was able to cope, and for that I will be eternally grateful to her. 

@ Jeanne Sather 2010. 

A Day on 'Surgery Time'

Friday was the day for my surgical procedure to place four gold seeds (fiducials, or fiducial markers, they are also called, but that sounds too much like the federal reserve and Alan Greenspan to me) in my sacrum. 

I was scheduled to check in at Evergreen Hospital on the Eastside at 10 a.m., and my friend Gretchen picked up Younger Son and me at 9.

I rather optimistically thought that I would be on the operating table by 10:05 or so, spend an hour on the table, another hour recovering from the sedation, and be heading toward Cherry Hill for my second medical appointment of the day by noon. 

What was I thinking?

It didn't go quite like that. 

We didn't get back to the house until 5 p.m., having rescheduled the cyberknife treatment for Monday. 

So, checked in at 10, and talked to a very efficient, friendly woman named Linda who got me through that whole paperwork thing very quickly and efficiently. (My regular readers will know how much I HATE paperwork, especially medical paperwork.)

Younger Son was there to give his name and cell phone number as my emergency contact, and Gretchen did the same thing as my official driver. (We ID-ed Younger Son as my bodyguard, which brought a few smiles.)

I was in a little surgery prep room by 10:30 where I changed into a gown and went through my medical history with a couple of different nurses--this took hours, of course. The doctor, Dr. Ferguson, popped in at some point and met Younger Son and Gretchen and explained the procedure very clearly. Love it when doctors can do that--and take the time to do it!

I think they wheeled me into the OR at about 12:30, and after getting me comfy on the table on my tummy, the IV sedation began and I don't remember anything after that until I was back in my little surgery prep room by about 2.

The nurse told me that I would probably "recover" there till 4, and I laughed, thinking I'd be awake and ready to go in 20 minutes. But she was right, and I dozed off and on and sipped at a mocha that Younger Son brought me until a quarter to 4. 

Then Gretchen helped me get dressed, two volunteers appeared with a wheelchair, and we came home. Oh, free parking at Evergreen Hospital for patients! Another nice surprise. 

So, I'm home, sitting here in my cotton yukata with the front door open so that I can hear the sound of the water garden and enjoy the fresh air. I'm in no pain, and Younger Son is planning to walk to the store and then make me some dinner, since I haven't had anything all day except for the mocha.

Older Son took the day off and represented the family at my uncle's funeral in Olympia, which is about an hour south of Seattle. I called him briefly to let him know that I am home and that things are fine, and I'll get his report on the funeral this evening. 

Once I eat, I expect to go to bed and read, and bring Constant the Wonder Dog in with me for comfort. He spent the day alone at home, which he isn't used to. The three foster kittens also need some playtime and attention, but Younger Son said he would do that. 

No phone calls, please. E-mails are welcome, but I won't read them until tomorrow morning. 

The bottom line? I'm fine. 

Support This Blog, Please

@ Jeanne Sather 2010. 

  

Very Quick Update

I'm still awake at 5 a.m., mostly because of all the decadron I had to take today to get through my first cyberknife treatment, but also because I had a bomb dropped on me in my personal life.  

I'm not going to go into that any further, other than to say it could not have happened at a worse time. 

I have three cyberknife treatments this week to treat the tumor in T-9 in my spine that is touching my spinal cord. If it compresses the cord, I will be paralyzed. We are talking paraplegic here, with the possible loss of control of my bowl and bladder, plus my legs, of course. 

The first treatment today was a piece of cake. I had the same techs who treated me in January for the tumor in my head, and of course I trust my doctor, who planned the whole thing, so I was able to relax on the table--lights low, soft jazz on the tape system--and just zone out for the 30 minutes or so that it took.

The only physical problem I had today was caused by the decadron--necessary to keep the tumor from swelling and causing more damage after it gets zapped. But decadron also makes you crazy--I was speaking at 200-percent speed all day long and bouncing off the walls. I had to take the second dose right at bedtime, and that's why I'm still awake. 

I'll repeat the drill tomorrow, although with about half the amount of decadron on board, and that should help. 

Friday is treatment three, the final one, but that is complicated by the fact that I am having the procedure to place the gold seeds in my sacrum in order to make sure the cyberknife lines up properly for that treatment. These seeds are going to go into the bone, placed by a needle like the kind used to do bone marrow biopsies, and I will have conscious sedation, so I'll feel it if the doctor gets too close to a nerve--a good thing, because if he hits one, the numbness and tingling in my legs may not go away. 

After that procedure, at 10 a.m. at Evergreen Hospital, Younger Son and my friend Gretchen, who is driving, will take us all back across the lake to Swedish Cherry Hill, where I will have the final cyberknife to my T-spine.

It's going to be a heck of a day, and I will probably go home and go to bed after that. I know there are risks involved with both these cyberknife treatments, but I feel they are acceptable risks. Kinda like last January, where the choice was to cut open my head or treat me with a computer-controlled robot.

The cyberknife to the sacrum is supposed to start one week after the placement of the seeds, so a week from Friday, assuming they can get me on the schedule. 

More later on all of this, but I have to try to get some sleep. I'm supposed to be going out to breakfast with both of my sons at 10 (Older Son is buying--he invited us), and I haven't been to sleep at all yet. 

Read more about Cyberknife

@ Jeanne Sather 2010. 

Death and Cremation: A Conversation

We have a lot of interesting conversations around our house (some of you might consider them weird or creepy) but for me and my sons and friends, these are pretty normal. 

Yesterday morning my friend Laurie came over--the original plan was to walk Constant and to do a few errands together, but I was too tired--and we were talking, me still in my jammies. Older Son came downstairs to join us, and we started talking about my Uncle Mick's memorial service and cremation. 

Uncle Mick died a week ago, and he was my only surviving uncle. One of his two older brothers died of a heart attack, and Mick himself had had heart problems since his 40s. He was my favorite uncle, and I am very sorry he is gone.

His memorial service is this coming week, in Olympia, which is about an hour south of Seattle, and I won't be able to go because I'll be doing daily cyberknife treatments by then. Plus, my mother (his sister) will be there, and I don't go to any family events where I am likely to encounter her. (That is another topic for another day.)

Older Son has agreed to go to the memorial service to represent our branch of the family, and he will probably take a friend with him. Younger Son will most likely be with me at Swedish, where I'll be getting my treatment.

So, since I can't go to the memorial service/funeral, I asked my cousin if she wanted me to go to the cremation with her, but she said she wasn't going to go. Now, this surprised me, because I assumed (maybe because of my years in Japan), that the closest family members did go to the cremation. 

In Japan, there is a ceremony at the crematorium, or at least that's what I've always understood. I've never attended a cremation or funeral in Japan. Most of my info comes from the fabulous movie, "Ososhiki," or "The Funeral."

Here are a couple of questions, for those of you who have had a close relative cremated: Did you attend the cremation? Also, what happened? Please describe it for us. 

Please leave your answer as a comment below, rather than e-mailing me, so that others can read it as well. 

A woman I loved very much died a few years ago of metastatic breast cancer, and I was involved in her care at the end of her life and I also helped her husband handle her ashes, which arrived in a plain cardboard box with a plastic liner inside. But I never thought to ask him if he had gone to the crematorium, or just picked the ashes up later. 

I don't even know if you have to pick up the ashes, or if you can have them delivered--does anyone know?

My end-of-life plans specify that I want to be cremated, but I also want a funeral, not a "celebration of life," because I think people need a chance to grieve (I've written about this before). Now, the general rule is that if the body is present, it is a funeral, and if the body is not there, it is a memorial service. 

But we won't be doing it that way. 

Recently, however, after an intense conversation with my friend Cheryl from Portland, I started thinking that maybe I should donate my body to a medical school. Because I know they always need bodies for medical students to learn on. 

One thing that holds me back is that I have heard plenty of stories--and watched movies--about medical students making jokes and being disrespectful to their cadavers. I understand they do this as a way of dealing with their own strong emotions about having to touch and dissect a dead body, but I don't want my remains treated that way. 

My thought was that I would ask a couple of my doctors, whom I trust, for their thoughts on the topic. 

But since we were talking, and Older Son was right there, I asked him what he thought. He said he needed to think about it, and of course I haven't made a decision yet and I told him that. He is fine with cremation, but I can see why he might not like to imagine medical students learning on my body. 

I do get that, obviously. I feel the same way to some extent. 

Also, a few years back, I did some thinking about what I would do if one of my sons were killed--would I allow their bodies to be used for organ donation? And I have to admit, as much as I understand the need for young, healthy organs for transplants, I'm not sure I could do it. 

Even if their gift might save the life of someone else's child. 

I'm not even sure if I would have a child of mine cremated, and I'm fine with that for myself. 

This conversation will continue, I'm sure, and I appreciate your input. As always, please don't tell me what to do. I'm interested in other people's thoughts, feelings, and ideas for themselves and their loved ones, and I'm interested in hearing from doctors about the cadaver donation issue. 

See also:

WHOSE Ashes Are in Your Closet?

To download Ososhiki, or just to read a review:

 Ososhiki (The Funeral)

If you are new to this blog, you might want to read: 

Why Be an Assertive Cancer Patient? 

And in case you are feeling generous and would like to support my work:   

@ Jeanne Sather 2010. 

Assertiveness Pays Off

After writing the last post about anxiety, and also e-mailing my doctors, I figured I might as well try to call Heather again, because she is the gatekeeper on getting me in for the "gold seeds" consultation. 

I happened to catch her on the phone--and she was very nice and professional--and she said, "Oh, you're on my list of people to call today," which, at this point, wasn't good enough for me. 

However, we both stayed friendly, and I now have an appointment with a Dr. Ferguson for next Tuesday, which was the soonest they could get me in. I do think that is OK. Then it will take a day or two to schedule the appointment to actually place the seeds--this is a day surgery, I'm going to be loopy and will need a driver, so the sooner I have that date and time the better.

Then the cyberknife team has to wait a week for the seeds to heal, so that they don't move. After that I go in for the planning CT for the cyberknife, then Dr. Lee the Second (Cyberknife Guy) and his team spend a few days or a week doing the math, and then I'm on the table.

Thank goodness! 

Cyberknife will take five days of daily treatment, and possibly have some side effects like irritation to the bladder and also the bowel. I can deal with that. Also, last time I had cyberknife, I felt sickish for a few days afterward, which I believe was caused by dead cancer cells in my blood. It was a weird sensation, but now that I know it can happen, I will just take it easy for awhile after the treatment is over. 

Next step: E-mail my doctors and let them know that I have dealt with the problem but I'm also going to ask them to gently lean on Dr. Ferguson, the doctor I am seeing next week, to let him know that this is (I am) a patient who is in danger of losing control of her legs. My dog will be very unhappy if I have to walk him from a wheelchair. Not to mention me.

Jeanne Sather 2010. 

Anxiety City

This morning, I was suddenly hit with a wave of anxiety like I haven't experienced in a long, long time. 

Last Friday, I saw Cyberknife Guy and we agreed to treat the tumors in my spine and sacrum with cyberknife. He went through the whole procedure and the possible side effects and told me what the next steps would be. 

The very next step is to have some gold seeds planted in my back around the tumor in the sacrum, to help make sure the cyberknife is on target. This procedure is handled by another department at Swedish Medical Center, so Cyberknife Guy and his staff don't have control over the scheduling of my appointment. 

But his nurse told me if I hadn't gotten a phone call by Tuesday, to let her know. So I waited till the end of the day Tuesday, then called and left a message for Cyberknife Guy's staff, and one of them called me back the next morning. 

Her message said I should be hearing from a woman called "Heather" and that I would need two appointments--a consult, and then the procedure itself. She also gave me Heather's phone number, which I called immediately, but she was--of course--at lunch. 

I left a message, and I've been waiting ever since. Now, not getting a call back within 24 hours may not sound like a big deal to some of you, but when you are worried about losing control of your legs, IT IS A BIG DEAL. 

Also, based on the timeline Cyberknife Guy had laid out for me, I expected to get the seeds planted in my sacrum this week, and it doesn't seem likely that that is going to happen. 

Which pushes everything else out further, including enrolling in the T-DM1 clinical trial, which I need to treat the other dozen or so tumors in my body (When I have a scan, the doctor who reads it never bothers to count all the tumors, he or she just writes something like "numerous bony lesions" and lets it go at that. Except for pointing out the ones that are most dangerous, and the ones in my lung and lymph nodes--those get special attention).  

So, after working in the garden for awhile and chatting with a couple of neighbors (we are all gardeners on this block, pretty much), I came inside, checked the voice mail, and then realized how anxious I was. Gulped down two xanax, and then sat down to e-mail my doctors. 

The first e-mail went to Cyberknife Guy, and then I forwarded it to Dr. Eulau, as an FYI. We'll see if one or the other of them can get things moving. 

Meanwhile, I have the rest of the day to get through, including a radiation therapy appointment at 3 p.m., and a couple of small errands. I have some jewelry projects to work on, but I can't sit still for that, so I think I will go out and water the back garden, and then maybe shower and dress and head out early. 

My next door neighbor said they spotted a rat on the fence between our two backyards (lots of food out there right now), so I need to get some rat poison to take care of that little problem. There are only three creatures I will kill: rats that have invaded my living space, mosquitos, and flies if they are indoors. I can't stand having a fly in the kitchen, but that's because I'm a germ freak since my cancer diagnosis. 

Oh, and we treat the dog and cat for fleas on an irregular basis, so I guess I'm willing to kill fleas.

A PS on mobility: It was only with great difficulty that I was able to persuade myself to use a cane a few months back when I was in a lot of pain. But a wheelchair? I am so not going there. (Of course, that's what I said about the cane ... but if we treat these spots quickly enough, I should not lose control of my legs.)  

See:

The Lady With the Cane 

Here's the entire "cane" category:

Cane 

@ Jeanne Sather 2010. 

Quick Update

The daily radiation therapy to my right femur continues, and I'm getting tired. 

I don't know if my fatigue is from the radiation itself, or from having to make the daily trip to the cancer center. I have several friends who drive me to appointments, and sometimes I drive myself. 

However, the last of my 20 treatments is August 3, so that's coming up pretty quickly.

In the meantime, I'm waiting to hear back from the person who has to schedule me for the next steps in my cyberknife treatment to my two largest tumors. I need a consult appt. and then an appt. to have the actual procedure done. (This is the placing of little gold seeds to guide the cyberknife.)

I wish we could just skip the consult and proceed directly to doing the procedure, especially since Cyberknife Guy (Dr. Brian Lee) has already explained it to me. Maybe I can suggest that when the scheduler calls me back ... 

In the meantime, I've seen Dr. Eulau, who is just back from a week in Paris, lucky guy, and is in fine form. He and I are on the same page, and he is really glad that Cyberknife Guy agreed to treat both these tumors with cyberknife. It should be much easier on me than conventional radiation.

What else is happening? I'm on decadron now, which is helping with the weird sensations and weakness in my legs caused by the tumor in my sacrum (I now know more about my sacrum that I ever cared to--that's all I'm going to say about that!).

Also, a friend and former student who recently returned from a couple of years in China with her family offered to loan me her 10-year-old daughter to help out twice a week, watering my garden and walking the dog. She's used to dogs, but we still have to get Connie under control, so we'll be training him in the yard a couple of times and then walking him together once or twice before I send her off on her own. Sweet kid--I love girls at that age!

I need to apologize yet again for falling behind on e-mail. I'm having trouble keeping up with e-mail from my closest friends, let alone strangers, PR people, and people with questions ... I will try to get to that on Friday morning. 

PS: Today's breakfast: Half a dozen baby carrots, a handful of peas in the pod, two cherry tomatoes, and a couple of blueberries. All eaten fresh from the garden, of course. 

@ Jeanne Sather 2010. 

Cyberknife Guy Is My New Hero

Cyberknife Guy has come through for me, and I think he's my new hero--at least this week!

He has agreed that the two most dangerous of the tumors that are threatening me, one in my spine at T-9 and the other a huge puppy in my sacrum that is causing loss of sensation and weakness in my legs, can both be treated with cyberknife. 

He also agreed that he could treat both of them at the same time, as long as I was willing to lie on the table for that long. No problem, I replied. Let's get this done! 

Next step? Get me in to have some "gold seeds' placed around the tumor in the sacrum to help make sure the radiation is hitting the target perfectly.

We'll wait a week after that procedure for the tissue around the seeds to heal, and then I'll go in for another CT, this one on a machine that lines up perfectly with the cyberknife treatment robot. 

After that, Dr. Lee (Cyberknife Guy) and his team will spend a few days working on the mathematical calculations for my treatment, and then I'll start. Five treatments, one a day until I'm done. 

We are hoping to have this completed by mid-to-late August, and then I can get back to working on getting access to Genentech's new drug, T-DM1, which may be available in Seattle by then. I have a call in to the UW study coordinator asking about that. 

My medical team: My team has four members: my therapist, who prefers not to be identified on my blog, partly because she isn't taking new patients right now; Dr. Doug Lee, medical oncologist; Dr. Steve Eulau, radiation oncologist; and Dr. Brian Lee, cyberknife guy. 

These four all have excellent credentials and experience, and I chose them carefully. I trust them and feel safe in their hands. But even more important, they understand me. That is priceless. 

@ Jeanne Sather 2010.