The Assertive Cancer Patient

Getting to Know My Colon

In preparation for my appointment on Monday with the doctor who is going to do my poop transplant, I've been researching the colon.

A couple of things I didn't know:

The colon IS the large intestine. (I thought I had both a large intestine and a colon.)

The colon needs healthy bacteria to break down waste products (I did know that part), while the small intestine uses enzymes (didn't know that part).

--------------------

With my problem, C. diff., I have an infection (bad bacteria) that multiple rounds of antibiotics have been unable to cure. And the drugs have wiped out too many of my good bacteria. Hence, the need to get a transplant of healthy poop.

I know, I know. I'm calling it "the yuck factor."

Read more about this whole adventure: C. diff.

Here's a simple explanation of the colon from WebMD: the colon

In case you were wondering, having this procedure won't interfere with my getting T-DM1 in a clinical trial. Nor did the T-DM1 contribute in any way to my getting C. diff.--I most likely picked that up in the hospital. 

 

@ Jeanne Sather 2012

After T-DM1, What Then?

One of my "T-DM1 buddies" e-mailed me the other day, and she mentioned that her tumor marker is climbing on T-DM1, even though she still feels fine.

So it may be time for her to look for another drug. And there are some new ones out there. I need to start keeping a list, because the names are almost impossible to remember.

My friend sent me a link, published in December at the time of a cancer conference in San Antonio, that lists two new drugs: pertuzumab and Afinitor (everolimus).

You can read the details here: New Breast Cancer Drugs Show Big Promise

One thing that always distresses me is that these drugs don't work for very long before the cancer progresses. In one study mentioned in the article, Afinitor kept breast cancer at bay for a median of only seven months before disease progression.

I've been on T-DM1 for about a year and four months so far, and things seem pretty stable. My tumor markers have climbed a bit, but not enough to worry the study doctor, or so she says. I'm taking her word for it.

Anyway, I'm not going to worry about this yet. I've got to get my C. diff. cured first. One problem at a time, please!

 

@ Jeanne Sather 2012.  

More on C. Diff. & Poop Transplants

A fellow cancer blogger, Ann of  http://www.butdoctorihatepink.blogspot.com, e-mailed me this information.

I wanted to share this site with you: http://www.cdiffdiscuss.org.  I don't know if you have found it yet, but not only have many people there done the fecal transplant, there is apparently a home method that folks are finding quite successful.

I'm not sure I could do it that way but I also know how desperate you get with this awful disease.  Anyway, there are lots of people there discussing their experience with cdiff and treatments so you might find it valuable.

Don't think I will be doing the enema home method--which reminds me of the days when women tried to get pregnant with a turkey baster filled with donated semen.

I'm still gathering information, and I have an appointment with a doctor who does this procedure at the end of February. 

Read more: C. Diff.

C. Diff. and Fecal Transplant

I haven't been able to find detailed information on the Web about this treatment for C. diff. Also, I like to balance information from medical sources with the experiences of real people.

So, if you have had a fecal transplant to treat recurring C. diff., I would really like to hear from you. 

Please post a comment below. Provide as much information about how the procedure was for you as you feel comfortable with. Most important: Did it work? Any unexpected problems or side effects?

Also, if you are considering having a fecal transplant, please join in the conversation. 

Thanks.

Read more: C. diff.

 

@ Jeanne Sather 2012. 

How's Life at the Manor?

Quite a few friends and readers have been e-mailing me or posting comments asking how things are in my new place, an assisted living building on Seattle's Capitol Hill.

One reader asked which was worse, not having a real kitchen or not having a separate bedroom. Neither of these has been as issue for me so far, except that I have to make my bed every morning. 

Cooking has been a struggle for me for months, if not a year, so I'm OK with not needing to shop for all my meals and then cook them. I make myself coffee in my new French press (a housewarming gift) before I get out of my jammies. The fridge has half & half for my coffee and some good Greek yoghurt from Trader Joe's, which is only two blocks away. 

Breakfast is served in the dining room from 7:30 to 8:30, but I usually don't make it. That's just too early for me. I like to putter and drink coffee before I shower and dress. Maybe I'll change my schedule gradually ... maybe.

One really nice thing: My room is cleaned once a week, on Saturday mornings, in fact, and this includes washing my bed linens and towels and then remaking my bed. Since I find it difficult to get the bed back together, this is a big advantage. My housecleaner told me I should get a laundry marker to put my room number on my sheets and towels so they don't get lost ... one more thing to do.

I've been keeping notes on my new life and I'll write a more detailed post soon. The days are too long, and I'm working on that problem. I'm at Younger Son's apartment this afternoon and then we are going out for an early dinner before he walks me home.

Tomorrow, Sunday, I'm going to a movie with a friend. She just started doing "mystery shopping," and seeing the movie is a job for her. I don't know much more than that yet; I'll try to write about it next week.  

Wifi

The manager at Fred Lind told me that he is working on getting Wifi access for residents who want it, so I'm waiting on that rather then setting up my own system ($$$$). Until that happens, expect me to update my blog about twice a week. I need to find a coffee shop with Wifi that isn't too far for me to walk to while carrying my laptop. 

The biggest thing I've realized is that I need a purpose in this new life. This blog has been that purpose (or one of several) since I began it back in 2006, and I've decided that I want to continue. 

Of course, I also have to get stronger--working on that--and get through the fecal transplant (my No. One medical issue right now). But it will happen.

 

@ Jeanne Sather 2012. 

A Poop Transplant?

It looks like a "fecal transplant" is looming--my C. diff. has come back too many times and all the antibiotics have wiped out my good bacteria in my gut.

I need a donor for this--see if you can guess who the lucky candidate is.

No time to write more now, but here's a link that explains a bit about the procedure: 

Fecal Transplant

My first reaction when the ID doctor discussed this with me was YUCK, but after too many bouts of C. diff back to back, and the fact that the success rate for repopulating my gut with good bacteria is 90 percent or higher ... well, I'm going to go for it.

Stay tuned for all the disgusting details. 

 

What IS C. diff.?

Full name: colostridium difficile

For those of you who have been wondering what all the fuss is about, here are some authoritative links:

Mayo Clinic

Medline Plus

Centers for Disease Control

C. diff. even has its own Web site:

cdifficile.org

Here are some of my recent posts about C. diff. You can find more under these categories: Germs and Hospitals.

Another cancer blogger who has been battling C. diff. along with cancer, Ann at But Doctor I Hate Pink.

 

@ Jeanne Sather 2012. 

Moving On

The snow is gone, and I will soon be gone as well: released from the rehab/skilled nursing place and into my assisted living apartment. 

That is scheduled to happen Friday. My friend Linda is coming to pick me up and take me to the drugstore, where my "discharge meds" should be waiting for us, and then to Fred Lind. 

The Wifi is working in my room at the rehab facility today (a miracle--I usually have to wander the building looking for a place where I can catch a strong enough signal), and I'm taking care of all sorts of things (confirming rides with friends and so on) and approving comments to my blog.

If you have e-mailed me and I haven't replied, I hope to get to that today. If I run out of steam, then tomorrow or Friday morning. Tomorrow I will be at SCCA to get my T-DM1 and see Dr. Julie Gralow. I'll get the results of Monday's scans, but I'm not anticipating bad news there. 

My biggest worry is keeping the C. diff. at bay. My tummy is OK right now, but I'm still on the vancomycin (an antibiotic). Each time I've finished a course of antibiotics recently, the nasty infection has returned within a couple of weeks. But, as I believe I mentioned the other day, I am seeing the infectious disease doctor on Monday, and I hope he has a plan.

I know that several of my cancer blogger friends and also readers of my blog have been dealing with this infection recently. I would like to put in a whole string of expletives here to express how I feel about what we all have gone through with the C. diff.--%%%****!!!###@@@!!! 

Does like look like swearing? Not really. Oh, well. 

A New Life

I will need to build a new life for myself in this new place. I don't expect it to be easy, but I think I'm facing it straight on (it helps a lot that my depression is gone). I'll be blogging about this as I move forward. As always, please don't give me advice or suggestions for making this change. If you want to leave comments about your experience during this kind of transition, please feel free.

I prefer: "This is how it was for me ..." Or, "This is my experience ..."

Rather than: "You should ..." Or similar comments. I know that I am exceptionally touchy about this, but it's not a part of my personality that is going to change, so please respect my wishes.

Otherwise, I can't write honestly about how I feel, and that is the whole point of this blog.

An OT staff person just came in, saying she has to do my progress report, and of course I'm still in my jammies. She went to get her computer to see if it will work in my room. Otherwise, I will have to get up and get cleaned up and dressed and go to the rehab room. I wasn't planning on doing that until after lunch, so we'll see.

 OK, that's over with, and lunch has arrived at my bedside, so I guess I will eat, then get dressed and cleaned up and head down to the rehab room to work with my PT guy. Gotta get stronger.

 

@ Jeanne Sather 2012. 

Snow Daze

Those of you who live in the Seattle area (or in the state, for that matter) don't need me to tell you about the snow and ice storms of the past week, and I understand we made the national news as well.

The snow disrupted some of my plans for last week, but not too many, and The Ranch (my skilled nursing facility) had power and heat. Short staffed, some days, and my favorite nurse ended up working two shifts back to back in order to cover for others who couldn't make it here. 

Physically, I'm still tired and weak, but definitely improving. The second bout of C. diff. is under control, but that's with me on vancomycin. I am worried about the long-term plan to keep it away, and I have an appt. with "my" infectious disease specialist on Monday the 30th. I'll stay on the vanco till then. 

Progress

Andrea ended up taking me over to Fred Lind Manor on Friday. We had a measuring tape and drew out the floor plan with measurements. I also had a list of the furniture that I want from the house.

It's a small studio (14' by 20', I believe). The "kitchen" is like a doll kitchen--a tiny sink, tiny fridge, and microwave. No counter space to speak of. 

Two closets, one quite large, and a reasonably sized bathroom with grab bars everywhere and an emergency cord. Only one window in the whole place. 

Yesterday, Saturday, Linda picked me up and took me to my house. This is always difficult for me, emotionally, but I needed to do it. I put post-a-notes with the word "take" on the pieces of furniture I want moved to Fred Lind, and we also boxed up sheets and towels, cleaning supplies and TP, and a couple of paper lamps to protect them during the move.

Tomorrow, Monday, a gang of six--Younger Son and five good friends--will be moving the furniture from the house and arranging it in my new home. The only thing that I'm worried about them having trouble with is my brass bed, which belonged to my great-grandmother, the Norwegian one. I've slept in that bed since I was 8 or 10, and I'm not ready to let it go. 

Plus, it has a new mattress.

While the move is going on, I will be at the Seattle Cancer Care Alliance to get scans required by the T-DM1 clinical trial. That will take three and a half to four hours, and yet another friend is driving me. 

Then back to The Ranch, where I have a "care conference" scheduled. I'm not asking YS or any friends to come to that with me, since we had one weeks ago before the return of the C. diff. I think I can handle it. At this meeting, the staff here evaluate my fitness to go to assisted living. 

Then, it takes them several days to do all the paperwork to spring me (don't ask--even I don't know why it takes so long). I'm hoping they release me on Friday ... we'll see.

The day before that, I have treatment at SCCA. With the blood draw, doctor's appt., and then treatment itself, that takes something like five hours. 

Oh, and then the following Monday, a week from tomorrow, I see the ID specialist in his office--which is all the way up in Edmonds--to talk about a plan to keep the C. diff. from coming back. I've had three bouts in four months. 

Cancer--it's not for sissies. 

Random notes:

I'm no longer wearing diapers.

The food here is beyond terrible, but at least I can eat small amounts.

I don't think Fred Lind has Wifi for residents, so there may be a gap in communication around the time of my move. I'm going to ask them to consider putting in a network ... there may well be other residents who want to get online. If not, I'm going to ask a techie friend to set one up for me.

Worried about the cost of that, but it's not the first thing on my list, so I've marked it to worry about later.

I have decided to continue with my blog. For awhile I thought I was done with it, but I don't think I am. I have a new life to make for myself, and the blog--and your support--will help me do that.

 

Jeanne Sather 2012.  

 

 

Some Good News, for a Change

Well, after weeks of paperwork, phone calls, hair-pulling, etc., etc., the state has finally approved me to go to assisted living.

The place I had chosen, Fred Lind Manor, has a studio apartment for me, paid for by Medicaid (of course, my SS Disability income will also go to pay for it, so I'll be pretty dang poor, but let's not worry about that yet).

Monica and I hope to go over there on Friday with a measuring tape (supposed to be a big snow storm between now and then, so ... that may have to change). I want to be fairly sure that the furniture I plan to take from home will fit.

I plan to go to my house on Saturday (Linda is taking me), and we will box up towels, bedding and some clothes. 

Then next week, my wonderful friends will be moving my furniture. I will arrive after that, within a few days or so.

This, of course, assumes that my C. Diff. is under control ... 

I will gradually gather up the small things I need from the house after that, since I have access until Citi acts to foreclose, and I was told that could be months (maybe not till June). Don't ask.  

Jeanne Sather 2012.