The Assertive Cancer Patient

Mother's Day: Minority and Mixed-Race Donors--Step Right Up!

I've asked Older Son, who is Japanese, to sign up for the National Marrow Donor Program as a Mother's Day gift for me.

I know from my own writing and from people I've known that it can be extra difficult for a person who is mixed race or a minority to find a good match for a transplant.

So I e-mailed Susan Hamre at the National Marrow Donor Program (NMDP) again, to get the latest info on this issue. Here's what she said:

Regarding the need for mixed race and minority people to register, the NMDP has made great strides, and the likelihood of finding a match has increased dramatically for patients from all racial and ethnic groups.

Nevertheless, because these traits are inherited, a patient's most successful match is with someone of the same heritage. The groups of individuals underrepresented on the Registry are American Indian or Alaska Native, Asian, Black or African American, Hispanic or Latino, and Native Hawaiian or other Pacific Islander, and there is still a great need for donors of diverse ethnicities and backgrounds.

@ Jeanne Sather 2008.

More on Mother's Day

I e-mailed a couple of questions to Susan Hamre of the National Marrow Donor Program (NMDP). Here is her reply:

In answer to your questions, there is always a cost to join the registry. This cost is for tissue typing, which is how a patient is matched to a life-saving donor. (The closer the match between the patient's tissue type and the donor's, the better for the patient.)

It costs $52 to test the tissue type of every new registry member. Knowing that the cost can be a barrier, we work with sponsors, search for grants, and ask for contributions from people year-round. This allows anyone to join the registry during the Thanks Mom campaign (May 5-19) without paying the cost for tissue typing (or until we reach our goal of 46,000 new registry members during the campaign).

One reason I'm so excited to be a part of the Thanks Mom campaign is because individuals who normally aren't able to donate because of cost can do so now. This campaign is all about helping others by becoming a donor and also by allowing more individuals the opportunity to more easily give the gift of becoming a donor.

Again, we are grateful for the financial donations of generous sponsors who allow the NMDP to make this kind of giving possible for so many more people.

I e-mailed her yet again to ask for more info about the need for minorities and people of mixed race to sign up for the registry--because I know that minority and mixed-race patients often have a very hard time finding a match.

I'll post her reply when it arrives.

Read my earlier post: What I Want for Mother's Day

Mammogram Today

One of the things I hate most about living with cancer is all the tests and scans. They take too much time out of my life, and they make me anxious.

I just got home from having my annual mammogram on my left (one-and-only) breast.

The test itself isn't bad, although that final twist of the clamp HURTS, and I'm not too worried about the results, even though I know one in 10 women who have had breast cancer in one breast get a second cancer in the other breast at some point (not sure what the stats are for women like me, with metastatic disease--I always figure they should be lower, because I'm doing chemo most of the time) ...

So why was my blood pressure up around 150 over 90 (I'm guessing, but that's how high it felt)? Major wave of anxiety during and after the exam.

Of course, I know the reason: flashback to how my life with cancer started, with a mammogram.

But in the nine and a half years since then I've gotten better at recognizing and coping with anxiety. So I decided to walk home--exercise really helps get rid of the physical effects of anxiety, and I called two of my closest friends and left them messages about what was going on.

One called me back a few minutes later and we talked as I was walking, until I got to a bridge over the freeway and couldn't hear, so had to hang up.

I stopped on the way home and bought a healthy burrito (Taco del Mar--is there any other kind?) for a late lunch/early dinner, and after I feed the kittens I'm going to crash out and read for awhile.

Today's experience was kind of funny, because just this morning I'd gotten an e-mail from a woman with metastatic breast cancer who has just started on Tykerb and is having a tough time with it. After asking me to compare symptoms (we cancer patients do that a lot with others on the same drugs), she asked how I managed to stay so upbeat all the time.

Here's part of my reply:

I don't stay upbeat all the time. No one could. I write about the bad days, too. And sometimes, like last Monday, I just have to take a day off and stay in bed and give in to all the bad feelings, depression, whatever. And I also have a really good therapist, and friends who will listen to me rant and rave if I need to. And the blog has been great, because of the friends I've met.

It's really tough. Just do the best you can and don't beat yourself up about it if you have a bad day or bad week or whatever.

The last thing I want is another cancer patient feeling bad because she thinks she isn't coping as well as I am. That's not what my blog is all about. And she's having a hard time right now, and I'm sailing along fairly well. Except for the post-mammogram blues, which are pretty much gone.

@ Jeanne Sather 2008.

Question About Tumor Markers

A reader posted a question about tumor markers to my blog the other day.

Here's what she wrote:

... Do you know how high the CA 27-29 tests can get? My mother-in-law has breast cancer that has metastasized to her bones. She has already had a spine surgery and also most recently a break in her right leg. Her level has increased dramatically in the last few months.

I have not been able to see how high the markers can get. I appreciate anything you can tell me as it seems that you are very aware of the various tests/markers. I also hope you are doing well.

Regards, Jill

Well, I didn't know the answer, so I e-mailed a couple of my doctors, and here is what Dr. Livingston (in Tucson) said:

Numbers in the hundreds are not uncommon for CA 27.29, usually much lower for CEA if it is elevated. But the absolute level of the tumor marker is not an indicator of how much disease someone has. What is important is whether it is elevated, and if so, whether it is going up or down.

Jill, I hope that helps.

Also, there is my recent experience with my tumor marker (the CEA), which is that it has been in the normal range for months, but I still have several active tumors. Three, actually. They showed up on the PET/CT.

Here's the post that Jill added her comment to:

Tumor Marker: Good (No, GREAT) News, for a Change

And my post about my most recent PET/CT:

The PET/CT Results: Disappointing

@ Jeanne Sather 2008.

E-Mail Your Doctor?

First, the backstory. I wrote in a post on April 17, after seeing my oncologist, Dr. Lee:

What else? I gave Dr. Lee the posts I've written about cancer patients preferring to e-mail rather than call their doctors, complete with all the comments you folks had added, and told him this was a very polite request from me that they consider allowing patients to e-mail rather than call.

He was totally sweet about it, and said he would give it to the practice manager! So I will keep you posted on that.

A few days after that, I received this e-mail from the practice manager:

Hi Jeanne--

Dr. Lee met with me today and gave me the copies you hand carried to him at your appointment last Thursday. I also went online and checked out your blog and the comments that others have posted about the desire to communicate with their physicians via e-mail, rather than phone calls.

You are very well informed and seem to have many of the details as to why we cannot share PHI with you via unsecure networks at this time. I appreciate your comments and your request. I am also the Privacy & Compliance Liaison for our practice and we continue to explore options on how to achieve the required level of security to preserve patient confidentiality. We are in the process of redesigning our website right now. Please stay in touch with me, and I will keep your comments ( & those of others) in mind as we proceed down this path.

When you are in the office for your next appointment, please ask the front desk if i am here -- I would like to meet you and say hello!

Take care-

Denise
Denise Parkinson, CMPE
Practice Director
Puget Sound Cancer Centers

Pretty cool response, I thought. I like it when people take me seriously. Here is my reply:

Denise--thank you very much for getting back to me.

I do understand about patient privacy issues, and that it would require changes in your computer systems that might be rather expensive. And I appreciate your listening to the voices of cancer patients, many of them people like me with metastatic disease, who would find it so much easier to e-mail their doctors rather than call.

As you saw in the article about Group Health, the doctors seem to find it more efficient too, once it is in place.

I will definitely ask for you next time I'm in. I am really happy with the care that I'm getting at PSCC from Dr. Lee and the rest of the team. I was especially pleased to have a woman from the billing office come and find me and discuss my bill and a payment plan with me face-to-face. That was much appreciated.

Jeanne

Praise where praise is due.

Here are the posts and newspaper story I gave to Dr. Lee:

Do You E-mail Your Doctor?

E-mail Vs. Phone Tag

The doctor will e-mail you now

@ Jeanne Sather 2008.

ASCO and a Better Mood

Well, my strategy seems to be working.

I finished writing my application for a grant to go to the ASCO conference in Chicago as a patient advocate, and sent that off, and that improved my bad mood by quite a bit.

As did all the supportive comments on my blog and in e-mails. Thank you all.

So now I need to move on and get the guest room clean, walk my dog, and go to the post office. Just the ordinary things of life.

ASCO
That's the American Society of Clinical Oncology, and some 30,000 people, mostly oncologists, I imagine, will be gathering for this meeting in Chicago in late May and early June. The downtown hotels are already sold out, so if I go I will have to stay at an airport hotel. Apparently there will be free shuttle service.

Here are some of the sessions that I plan to attend:

** Communicating Prognosis: How Oncologists Can Be More Effective
(I know Tony Back, the moderator for this one, and have made presentations with him several times in the past, including one to medical students at the University of Washington Medical Center. Baby doctors, I call them.)

** Integrating the Humanistic and Scientific Aspects of Patient Care: The Perspective of Seasoned Surgical, Medical, Pediatric, and Radiation Oncologists

** Access to Investigational Drugs Off-Protocol: What Do We Owe Patients?

** Conflicts of Interest in Oncology: Understanding the Problems and Finding Solutions

** Recognition and Management of Medical Errors in Oncology

** Erythropoiesis-Stimulating Agents Use and Overuse: How Do Oncologists Negotiate Conflicting Demands?

Great titles, huh? (NOT.)

I was looking for more on clinical trials, like how to get cancer patients to enroll in clinical trials, because I have some thoughts on that, and also some sessions on psychosocial issues, which I didn't find at all. I want to suggest that someone should do a psychosocial trial about stress over medical bills and patient outcomes.

I'll take the info I have on that along with me to the conference, because I might meet someone who is interested, and of course I will have my laptop so I can blog about all of this.

Go to the ASCO site to read about the conference: ASCO

PET/CT--Thanks for the Support

Friday morning. It's pouring down rain, and dark. My mood is still shaky, but I know it's the kind of mood that needs me to be busy and productive to improve. So today my plan is to write my application for a grant to go to ASCO (the big oncology conference) in Chicago this summer as a patient advocate.

Luckily I got a start on the application earlier in the week, because it's due next Monday, and my head is a bit fuzzy from being upset over the PET/CT results.

Once I get that done, I need to clean the so-called "guest room," where I've been sleeping for the past year (don't even ask what happened to my bedroom), so that a real guest can stay there next week. She's arriving on Sunday, and I'm having the carpet cleaned Saturday, tomorrow, to get rid of all the dog hair--the two dogs generally sleep in there with me. It's like the Bat Cave. Piles of books all around the bed.

So that's the plan for the day. If--a big IF--I have the energy, I'm going to tackle the problem of the Corvair--the mechanic keeps finding new, expensive problems to fix, and by this point (five weeks and counting), I think he's scamming me. So I'm going to ask another mechanic to talk to the first mechanic and tell me what he thinks.

But that takes energy, and focus, so I haven't gotten to it.

Thank you all
But this post was really meant to be a big thank you to all of you who read yesterday's post and respected my wishes for the kind of support that I needed (and need) right now.

One friend send me a one-line e-mail: "I send love, b."

Another offered a trip to the bathhouse one morning next week. (See: Women's Bathhouse)

And you can read the comments from my online friends here (scroll down to read the comments): PET/CT

Then there was an e-mail from Anna, a young woman with breast cancer who first got in touch with me about a year ago.

This is what she wrote:

I’ve been keeping up with your blog since I had DCIS about this time last year and I wanted to say I’m sorry to hear you were disappointed with your PET/CT results. I had a small, “probably benign” spot on my last breast MRI and it was simultaneously infuriating and totally disappointing. I’m 25 so I have spots on my MRIs and mammos all the time, but this was when I finally had three whole months without a biopsy or anything so I was pissed. I know that’s not the same thing as what you are going through, but I understand that scary, frustrated, angry feeling that comes with all the tests.

Your blog has been a great source of information and strength for me. I first found it when you made the buttons which I LOVE and which you were kind enough to send to me a while ago. I got quite a few comments about them at school. I hate all the pink marketing. I mentioned not really appreciating all the pink ribbon crap at a support group at my local hospital when I was first diagnosed and I couldn’t believe the response I received. I had one woman tell me that I wouldn’t understand because I *only* had DCIS (the woman who told me this was in her 60s with two adult kids and doesn’t have to think about breastfeeding, fertility, etc.) and that if I didn’t appreciate the community maybe I didn’t need to be there.

The moderator handled it well but it was an abrupt lesson at a bad time, so I was THRILLED to come across your blog and find I wasn’t the only one who thinks turning a disease into a marketing opportunity is sad and disappointing. Reading about how you handle these challenges with dignity, strength and a sense of humor has been enlightening and made this process just a little easier. I’ve struggled to find a relevant community that speaks to my experience as a young woman who has had an initial stage of breast cancer and I keep returning to your blog. It keeps me thinking positive without any of the saccharine pandering I’ve encounter elsewhere, and it reminds me that it’s not unreasonable for me to expect certain things from my doctors.

I’m BRCA2+ so feel free to e-mail me if you do the test and want to talk about it at all. It’s good information to have and for me it helped answer the whole “why the f*ck is this happening” part of everything, but my dad took it kind of hard since it’s from his side of the family. Navigating when and who to share that information with can also be a challenge.

Be strong, give yourself time to be disappointed, but keep us updated and know that you’re helping by sharing your story.

OK, so there was a little bit of advice in there, but it was gently given, helpful advice, and it WAS helpful.

Note how she was attacked at a SUPPORT group for stating her opinion about pink ribbon crap? Ouch! That is not supposed to happen. But then, I'm not a huge fan of support groups.

@ Jeanne Sather 2008.

The PET/CT Results: Disappointing

This is a really tough post to write, because I'm upset.

I was hoping that the PET/CT I had on Monday would confirm the low tumor markers I've been having for the past four months--CEA (tumor marker) numbers that were in the normal range, meaning that my cancer was gone.

Well, I'm an optimist, and I liked that idea: That my cancer was in clinical remission with no active signs of disease, so I ran with it--in my own head, at least.

But that's why you never rely on one test alone when dealing with metastatic cancer.

The scans show that I still have at least three areas (we don't use the word "tumor" much around here) that light up, meaning that there is cancer activity there: one in my spine (T-11) and two in my pelvis. These are almost symmetrical: one is on the right posterior ilium and the other on the left anterior-superior iliac crest. (Please don't e-mail me and ask exactly where those are: Either look it up, or accept that they are in the pelvis and that's enough information.)

None of these spots is very large. They are either stable or show slight progression since my last PET/CT in November, despite the regimen of Tykerb and zometa. None of them is of any immediate danger to me, and I am not in any pain.

OK, so I am upset. When I finish this post, I am going to get into bed with a book, something to eat, and the companionship of the two dogs. I will be turning off the phone.

But really, it's good news
If you look back over my cancer history, I probably have fewer mets now than at any time since my cancer first metastasized to my bones--then I had more than a dozen. Maybe 20. I never asked Dr. L for an exact count, because it creeped me out too much.

And, as I said, these are small, not causing any pain, and are not in places where they are likely to cause a fracture. The only one I'm worried about at all is the one in my spine, because if it grows out of the bone, it could paralyze me--but it's not there yet. I saw it on the scan.

So, Dr. Lee and I went over the report, looked at the scans on the computer, and then discussed what to do.

What next?
He suggested putting me back on Avastin, in combination with the Tykerb and zometa, to see if we can shrink these spots even smaller, or at least keep them from growing, because they are growing on my present regimen.

I agreed to this.

I also still need to get a mammogram on my remaining breast, and we scheduled that for a couple of weeks out. Women who have had breast cancer in one breast have a 10 percent chance of getting a second, unrelated (not a metastases, in other words) cancer in the other breast.

So it's no use thinking lightening can't strike twice.

He also suggested that I get the BRCA test, to see if I have one of the genes that increases your risk for breast and ovarian cancer--oh, and colon cancer. The reason for this is that I was diagnosed at a young age (43), and my brother was diagnosed with colon cancer in his early 50s and died of it at 54.

So if I have the gene, I would be at greater risk for ovarian and colon cancer, but also Younger Son (the biological child) could be a carrier of the gene, and my sisters would also need to be informed so that they can increase their diligence.

That test is just a blood test, so I'll have it next time I'm in.

Then we discussed a colonoscopy, which I haven't had, despite my brother's colon cancer. Dr. Lee was straightforward, which is how I like my doctors to be--and he said the question really is: Am I going to live long enough that colon cancer is a possibility?

We decided that the answer is yes, so I will get the test. The other reason is that if I do have early stage disease, polyps, it can be cured very simply.

So I added a colonoscopy to my already full medical schedule for April and May.

What else? I gave Dr. Lee the posts I've written about cancer patients preferring to e-mail rather than call their doctors, complete with all the comments you folks had added, and told him this was a very polite request from me that they consider allowing patients to e-mail rather than call.

He was totally sweet about it, and said he would give it to the practice manager! So I will keep you posted on that.

OK--If you are new to my blog: DO NOT e-mail me with suggestions or advice of any kind. DO NOT suggest treatment regimens, alternative treatments, or anything else. I am not looking for advice.

Also, FOR NOW, please do not e-mail me with any questions about my disease status or these tests. I don't want to talk about it right now.

As always, messages of friendship and support (without the standard cliches, please) are always welcome. Please understand if I don't reply right away.

Thank you all for understanding, and for being my family.

@ Jeanne Sather 2008.

The Happy PET/CT

Usually, tests or scans are times of high anxiety for me, as they are for most--probably all--people living with cancer.

For days before a test or scan and then for the days afterward until I get the results, I am spacy, stressed, and scared.

But not this time. I went in for a combined PET/CT scan yesterday, and for the first time ever I was looking forward to it.

The reason?

I expect the results to confirm my low tumor markers (a CEA of 1.2, 1.7, and so on) of the past few months. Those CEA numbers are in the "normal" range, which means NO ACTIVE DISEASE. If the PET/CT confirms that, I will be in clinical remission for the first time in something like four years.

So this is a big deal. Of course, clinical remission doesn't mean I get to stop treatment. No such luck. If I did that, the cancer would be back, fast.

The nice folks at Via
I get my scans at an independent clinic in north Seattle called Via Radiology. My oncologist, Dr. Lee, is at Northwest Hospital, which has apparently decided not to invest in spendy PET/CT scanners, and he sends his patients to Via.

I talked to my technician about this, because I'm always interested in cancer care as a business, and she said that Via opened with the latest and greatest in scanning equipment (including an MRI machine large enough that I can get MRIs there--no claustrophobia) when most cancer centers in town didn't have the combined PET/CT.

Now, the Unversity of Washington has two, I believe, and SCCA (partly owned by UW) has one. Swedish cancer center has at least one.

So there's lots of scanning capacity on expensive machines chasing a somewhat limited number of cancer patients.

She said that Via has to compete by offering the best customer service, and I have to say that I have always had good experiences there. While at the University of Washington Medical Center, I was once left lying on a guerney in a cold, drafty hallway for the hour that you have to wait after taking a dose of Valium before the scan can begin.

I felt like a dead body lying there with people passing by.

One thing that had bugged me in the past was that each time I go in for a scan at Via, I'm given the same four or five pages of medical history forms and so on to fill out. Well, going though my medical history stresses me out, plus I know they already have this info., so I've started writing "see records" and "You have this information" on the forms and signing them.

But this technician, before she even saw my copies of the forms, had gone and checked my medical history, so the only things we needed to discuss were the changes since my last PET/CT in November.

Much less stressful.

Most cancer patients probably don't realize that they don't have to get their scans at the cancer center where they get treatment. Of course, that's usually the most convenient place to get them, but if, for example, you are claustrophobic and can't do conventional MRIs, you can go to a clinic that offers open-sided MRIs, or to a place with the newer machines, which are larger.

Oh, so the next big thing: combined PET and MRI machines. Watch for them at a cancer center near you.

After the scan
No need to describe the scans. The whole process took something like four hours, and when I was done, I was still loopy from the Valium, so I decided to walk home. I'd taken a cab there, since I knew about the Valium, and my car is still at the shop. The mechanic found yet another expensive, essential repair--I'm getting on this in the next day or two--I think I'm being scammed.

Anway, back to me. It was 5 p.m. and I hadn't had anything to eat since the night before, so I popped into a little doughnut shop and treated myself to a glazed old-fashioned for the walk home.

Yum. And I walked, in the rain, all the way from the corner of Meridian and Northgate Way to my home in Ravenna. I estimate the distance at five miles, at least. It took me an hour and a half, and I was pretty wet by the time I got home, but my head was clear and I felt so very alive.

Results on Thursday
I'll post something once I see Dr. Lee on Thursday.

@ Jeanne Sather 2008.

PET Scan Nightmare

A friend just had a routine PET scan, and she e-mailed me this account of the ordeal.

Prayers and the PET scan

OK, Hell must exist...I just lived through it...and if she (the PET scan lady) is going to heaven, I don’t want to be there.

I had the yearly PET scan today.

For those who are not familiar, the cancer "victim" is injected with radioactive contrast that seeks rapidly changing cells, like cancer, infections, kidney problems, etc. The injection happens one hour before the scan...you have to lie in a dark room for it to get through your body, you are then taken to the PET scanner which looks similar to a CT scanner (doughnut shape/hard table), but you are velcroed into a straightjacket-type thing and have to lie there without moving for over an hour. The radioactive contrast shows as a bright spot on the scan when it has found the bad parts.

Long story short, I was there (at the Cancer Center) from 9 a.m. through 11:45 a.m.

I am now radio active for 24 hours and should not be near children or pets...

They also give you a card, that explains your ability to set off alarms at airports and electronically secured buildings for Homeland Security.

The scan was not the hard part...the injection was not the hard part...the constant "how wonderful am I" from the technician was intolerable.

It all started with introducing herself and telling me that she prayed for HERSELF everyday to give her the strength she needs to see the positive scans of the patients (victims), therefore changing their lives forever, and not get depressed. Note that she did not pray for the victims...just herself.

She told me how she had talked with an HR person (who by the way knew nothing about medical stuff although she worked in Human Resources at a local hospital)...anyway, the HR person was astounded by the outstanding work and and importance of this nuclear technician.

She then told me how God had saved her from childhood illness so that she could do this wonderful Nuclear Medicine later in life.

She interned in Pittsburgh and dined with medical students that were not educated properly.

She knew of people who thought they knew everything.

She herself knew enough to be dangerous (that’s a quote).

God gave her a stepson, so that he could have the opportunity to have a wonderful Mom like her.

I eventually tuned her out...and when she said, "OK, you are done," I almost said, "finished," but held it back and mustered "good."

I got up shaking and a bit disoriented, after having not eaten and had little sleep, but I am so very happy to be out of there.

On the surface...getting an injection and laying on a table seems like a piece of cake...it is the stress of knowing that there will most likely be glowing spots (cancers) on the scan that need attention...it is the stress of lying there rigid and tied down and thinking of everything that could possibly be wrong with you, I could go on and on about the stress involved.

I won’t know the outcome until next Thursday.

And finally, the fabulous Nuclear Technician completely forgot to give me the card for Homeland Security....Stay away...I am glowing!

Note from Jeanne: I've gotten numerous PET scans over the years, and no one has ever told me to stay away from pets and kids--they just tell me to drink lots of water. All this time, and I never knew I was radioactive after the scan! I've also never been offered the card for Homeland Security purposes.