The ABC Cancer Diaries

A young, American-Born-Chinese woman living with metastatic breast cancer

Navelbine and Me March 29, 2009

Filed under: Treatment — wenren @ 5:00 pm

My spontaneous attemptĀ  at a poem (ala William Carlos Williams. You know he was a pediatrician.)*

Tomorrow is the day that I get my port.

I have to be at the hospital at 7 am.

I hope I don’t have to wait too long…
(more…)

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Another scan today March 27, 2009

Filed under: Scans — wenren @ 1:19 am

We’ll (hopefully) know soon what the results are….Monday is my next treatment (navelbine), but before then I get to get my port put in. I hope navelbine isn’t too bad. I’ve been reading alot on it, so I feel like I know the worst that could happen. We’ll see…

 

Scans, Tinglings, and Becoming Port-able March 21, 2009

Filed under: Uncategorized — wenren @ 9:56 pm

I haven’t written in a while because I’ve been catching up on sleep, and exercise. It has been a trying couple of last months. Basically, I am done with the clinical trial. My oncologist believes that it is not worth the horrible side effects. To quote her, “The point of the trial is not to make you miserable!”

AMEN.

So, given that I am now rash free, I am so happy just to have my regular life back, which includes working, and running, and swimming, and cooking and eating. It is really amazing how great it feels just not to be itchy or itchy AND sleepy! Amazing!

So, the next steps include getting another scan just to get a better, more accurate sense of what is going on. Though it seems like I may have maximized the effectiveness of the trial drug, as stuff still feels pretty much the same in size — though we’ll know for sure after next Thursday.

The next treatment will be a “regular” chemo — regular meaning it’s FDA approved, and all the side effects are known. It should be pretty well tolerated. My hair should begin to grow back, and it doesn’t take too much time to infuse. But the one tricky thing is that if not administered correctly, it can irritate the veins, sooo….my doctor suggested I get a port. A port is a direct access line to one of my veins. It usually looks like a quarter under the skin. I am told that I can swim and everything, and as opposed to getting stuck each time with a needle, the nurses can just access that for blood, and whatever else needs to go in me. I suppose another analogy would be right now I’ve got a water pump, and after the port I’ll have indoor plumbing!!

Getting a port does require a minor procedure. It will be an outpatient procedure, and right now it’s scheduled for 7 AM on March 30th, so I will have to miss work. They will put me in “twilight sleep” and then when I wake up I will be portable! Afterwards, I will be going directly to treatment and getting my first round of navelbine (the chemo drug name). I believe that with Navelbine they give you four rounds (once a week for four weeks), and then check to see how I’m doing on it, so my schedule may be adjusted as needed.

Of course, I’m just hoping that everything goes without a hitch, no rash (please!!!), and that it works!

And as for how I’m feeling these days, mostly back to normal, but yet another side effect of my trial drug is peripheral neuropathy. Basically my fingers and toes feel tingling, and while it isn’t painful, it is a result of nerve damage. So, you could say the last treatment really got on my nerves!! (HA!)

So, to be proactive about making sure that the neuropathy doesn’t get any worse, I’ve started taking L-glutamine powder (what body builders take to build protein) and vitamin B, which are both supposed to help. So if you notice my neck getting thicker…. Anyhow, that’s what’s new with me. Thanks for checkin’ in.

 

Back on steroids March 15, 2009

Filed under: Steroids — wenren @ 2:21 am

I couldn’t suffer anymore after a long restless night, getting up frequently to ice myself down. So this morning I called my doctor, and had prescription steroids called into my local pharmacy. This at least allows me to function, and sleep. I took a nice long afternoon nap. The itchiness is better under control, but after the itching — the itchy parts always hurt alot. Picture a really severe sunburn, so I’m just waiting until the rash goes away, and looks like we might have to look into other treatments because the side effects are just intolerable.

 

Scan Results, and another round of the itchies March 13, 2009

Filed under: Scans — wenren @ 9:24 pm

So, we finally had some closure this past Tuesday on the results of the scan. The short version of the story is that it took alot of prodding and following up to ensure that the radiologist looked at my previous scan and compared it to the current scan that I did last Wednesday. There were a number of mixups, and it is still unbelieveable that so much coordination is needed to have scans transferred from one institution to another.

But basically my scans are stable which means nothing new, but everything that was already there is still there. It is somewhat positive news, but I was hoping for more. Given that, we went ahead with another round of this treatment this past Monday. They lowered my dose because I have been experiencing a horrible rash (one that can prevent me from sleeping).

So, this time around we all hoped that I wouldn’t have any rashes, but pretty much like clockwork I got the itchies starting Wednesday night, and right now I’m still itchy!

I went back to the dermatologist today, and there wasn’t much else he could give me. I don’t really want to do more steroids, so I’m going to try to ride out the weekend by relying on prescription strength topical steroid cream, ice, and cold baths, and patience!!

At the very least, I hope that the rash doesn’t last as long as last time.

 

I Don’t Know My Scan Results Yet March 6, 2009

Filed under: Scans — wenren @ 10:55 pm

Frustration is the word that sums it up.

I don’t know my results, and I won’t know until Monday morning while I’m at work. (So please don’t ask me because I don’t know.)

Not only do I have to be the patient (I think there is a reason why patients are called patients…), and get the tests and get poked, I have to be the secretary for managing all of the paperwork, and making sure people get the right documentation. My last scans were done at Sloan because I was on a clinical trial there and they required scans to be done there. Now that I am on another trial at another hospital, I decided to get the scans done there. So I had to coordinate and make sure the scans from Sloan got to the Cornell, but I didn’t realize I needed to physically pick them up and hand them to the radiologist. I thought I was saving time to have them mailed to my doctor’s. The messenger from Cornell didn’t pick up the cd until the end of the day yesterday, so no report got written because I guess they didn’t have time to review the old scans. So, I’m left with no results. All of this is incredibly frustrating because:

1) I have metastatic breast cancer

2) I work full time

3) see no. 1 and 2, so I don’t have time to run around making sure everything gets to where it needs to be

So, in the meantime I am left with no results, and then I get to have them early in the morning on Monday when I’m at work (where I have poor cell phone reception, and no privacy), and have no time to process it (Monday is my next treatment date) even though it will determine what treatment I will do next. Frustrating? You bet.

So, when I tell people that having cancer is like having a full or part time job, these are what the job entails.

 

SCANS, SCANS, SCANS March 4, 2009

Filed under: Scans — wenren @ 2:57 am

Tomorrow (Wednesday) I have CT scans of my chest, abdomen, and pelvis with and without contrast. I will know (hopefully) by Thursday how well this new treatment is working. I hope it is working well enough that the cancer in the liver has gone away. That would make the rashes all worthwhile.

Contrast, if you aren’t familiar with it, must be injected via IV, I also have to drink a really bad tasting solution beforehand that helps the contrast and the images be clearer. The contrast that gets injected in also makes you feel really, really hot for a few seconds (like I will spontaneously combust, actually). Also, I have to hold my breath a couple of times as I scan through. I’ve had at least ten scans just in the past couple of years, so one could say my level of experience is “expert.”