Cancer Doesn’t Come to the Party Alone (by Judy)

October 21, 2011

A Facebook friend of mine who has lupus once told me

Lupus doesn’t come to the party alone

and went on to list other ailments she has had since she was diagnosed with lupus. I feel very much the same way about my cancer.

As most readers of my blog know, I was first diagnosed with Stage 4 Inflammatory Breast Cancer (IBC) in January 2008 after a month of tests. IBC is a rare and aggressive form of breast cancer. One explanation of IBC can be found at the Mayo Clinic website.

Anyways, my cancer certainly hasn’t come to the party alone. Throughout my treatment, I’ve been diagnosed with ailments that I either wouldn’t have without the cancer (or treatment) or that would have taken longer for me to get. Since I was diagnosed with IBC, I’ve also been diagnosed with arthritis, diabetes, and a pulmonary embolism (a blood clot in my lungs). It’s possible that I would have eventually had arthritis and diabetes because they run in my family. However, I suspect they would have come later in life without my cancer and the grueling treatment regimens I’ve endured. The pulmonary embolism is a direct result of having cancer, as my oncologist told me. I take medication for each of these conditions.

In addition, my teeth and eyesight have worsened because of the cancer and treatment for it. Currently, I also have dermatitis (a rash on my face and other places on my body that looks like pimples) and hand-foot syndrome.

Don’t get me wrong. I’m not trying to complain; I’m simply stating facts. Is this cancer different than cancer(s) that other people have? Well, yes. Each cancer patient, even each metastatic IBC patient, responds differently to cancer treatments. My treatment is individualized to me and my cancer and other conditions. I meet with my oncologist once every four to six weeks to see how things are going — what side effects am I having, how does my bloodwork look, etc. She is wonderful at asking questions specific to me, and I feel comfortable asking her about anything.

One place you can go to find out information about cancer treatment is a website called Is My Cancer Different? Is My Cancer Different includes sections on Individualized Cancer Treatment, Frequently Asked Questions, and Expert Insights. Each section includes subsections full of information from patients, medical professionals, and scientists that can help someone who is starting out on their cancer journey. It can even answer questions — or provide reassurance — to those of us who are (or feel like) old-timers in the cancer community.

I am so glad that my oncologist subscribes to the notion that cancer affects everyone differently. As regular readers know, I’m currently on a chemo regimen that works well for me. However, as my oncologist told me, some women can’t tolerate it. She also told me that some women have been on this combination of drugs for three years or more. That would be a good thing, of course, because I’ll be on this regimen until it stops working for me. At that time, she’ll find another chemo regimen for me. She’s told me that a number of women can live for “many years” with my condition. I haven’t yet – nor may I ever – ask for her definition of “many years.” You know, I have that nine (almost ten) year old son I’d like to raise to adulthood, and of course, I’d love to be here on this earth beyond that time. I just don’t know what the future holds.

No, my cancer – unfortunately – didn’t come to the party alone . . .

even though there was no invite.
Cross-posted to Just Enjoy Him.

mixed. but good. i think. (by Laurie)

March 10, 2011

And I’m not talking about the weather, which while it has been mixed, has been pretty consistently bad for the last twenty four hours. We had a big dump of snow (the photo above was taken from my front door), followed by freezing rain, which will be followed by ordinary rain.
Good thing I just bought rain boots.

My GP called me last week to let me know the results of my endoscopy (I won’t get in to see the gastroenterologist until March 21st). All my results were negative – no celiac, no bacterial infection, no cancer. It’s all good.

Then I talked to my oncologist on Friday. We discussed my scope results and my digestive symptoms (diarrhea, heartburn, abdominal pain). He expressed surprised that I was still feeling lousy on Friday after a Tuesday treatment. I told him that my recovery time had gone from four to six days and that last round, I’d felt sick for a week (this ended up being the case this time, too).

Then my oncologist said, “It’s time to take a break.”

I was floored.

I had been hoping to hear these words for months (years even) but when I finally did, I definitely had a mixed reaction. I’m being taken off the chemotherapy not because I’ve been in remission for a while (although I have) but because the chemo has started to take too big a toll on my body.

As Dr. G. said, “You can’t stay on vinorelbine forever.”
I’m going to continue with the Herceptin but take a break from the chemo for at least three months. Herceptin is also known to induce flu-like symptoms but I don’t think it has the lasting toxicity of chemotherapy drugs. I’m likely to bounce back more quickly after treatments.

So we’ll see what happens. There are no guarantees of anything and no promises. Every change involves risk.

But the next few months will be devoted to healing.

Cross-posted from Not Just About Cancer.

Neutropenia and motherhood

February 23, 2011

Neutropenia is a common but yucky side effect that affects about half of cancer patients on chemotherapy or treatment with a biological agent (like Nexavar).  When a cancer patient is neutropenic, it means that her white blood cell count is low and she is much more suceptible to infection.  She is given direction to avoid possible sources of infection, to stay away from crowds, to wash hands and insist that others wash hands before coming into contact with her, and to change her diet to avoid the risk of infection from food. 

All foods must be freshly cooked.  None can come from restaurants or uncontrolled sources.  Bread must be bagged and not homemade.  Cutting boards must be changed between preparation of meats and other foods.  No deli meat.  No deli cheese.  No hand-packed or soft ice cream or froyo.  No soft cheese.  No popcorn.  Nothing from a bakery.  No raw veggies, fresh fruits, except those with a very thick skin (oranges and bananas), or dried fruits.  No spices, salad bars, buffets, or restaurants.

I’m pretty sure the guidelines would say no contact with little children who bring home infections from preschool, but what can I do?  I have two who need me, and one is home sick today.

Originally posted at Toddler Planet, February 22, 2011

My PICC line

July 15, 2010

by Susan, IBC survivor, and crossposted on Toddler Planet.

PICC lineIf you saw my post on Toddler Planet yesterday, you may have wondered, “What is that?” and “So what?”

Well, the short answer is that it’s a PICC line, a peripherally inserted central catheter. I tried to do the research and tell you all about it, but I keep getting ooked out by the concept of a long (43 cm) tube threaded through my vein with a wire and inserted near my heart. And the line hanging out of my upper arm, dangling about my elbow. So, I invite you to read the link above (from the NIH) if you’re curious. There’s also a diagram there which explains it pretty darn well, without a single word.

It’s not painful, but it is uncomfortable and … well, weird. I had to have the line put in when I was at the hospital yesterday — which I visited only because my primary care physician insisted. By which I mean she told me to go, and when I refused (twice), she brought in another doctor to confirm it and told me that either my huz would take me (he drove me there, naturally) or she would call an ambulance.

We went to a different emergency room than the one that almost killed me last November. We were ushered to triage nearly immediately, and wheeled (oh, joy) back to a bed before you could blink. A nurse, a registration tech, and the doctor all visited me before I had time to put a gown on. It was nearly the exact opposite of last year’s trip to the ER. They were worried about appendicitis or something acute, so they needed scans. I was happy to oblige, even though my regular scans aren’t quite due yet, but I had a problem. Niether of my arms can take needles. Both arms have lymphedema now, and they will swell up with a single scratch, paper cut, or burn from a hot pot on the stove. An IV would push the fluid into my arm … but not out. The nurses also needed to draw blood.

So, after all this time, I got my first PICC line.

The line was inserted in the hospital by a physician using ultrasound images to guide him. Dr. D. has done 9,000 of these PICC insertions and his partner has done another 5,000. Of those 9,000, he said afterwards, only 3 have even been able to feel the tubes in their arm and chest. (Guess who said, “Hey, am I supposed to feel that in my arm and shoulder?” prompting that discussion? So now his number is 4.) Nate and Nancy, the assistants, were just lovely, getting me a pillow, a blanket, and an armful of betadyne to sterilize my arm (elbow to shoulder, fellas? really?). I was reassured, and didn’t look at the screen once during insertion. I was really okay about it — until I was leaving and Nate said over his shoulder, “She had really small veins! When we get back, I’ll show you — we took a picture!”

Nice, Nate.

So we got the tests done, and, after several hours and hundreds of prayers (one call to my friend Jess, and BAM! the church prayer chain got activated in full force!), we were dismissed, with no diagnosis but a CLEAN scan of my lower abdomen and pelvis — no gross cancer (YAY!), no appendicitis, no gall bladder issues, and pretty decent CBC counts. “Go home and rest,” they said, “and follow up with your oncologist tomorrow.”

Yeah. Right. I did, of course, knowing full well that a little tummy trouble (bent-over pain in my abodomen) wouldn’t even register on her radar. And indeed it didn’t, with me playing round robin as I called all the doctors to ask about my low red blood cell count. “It could be from radiation. Call your radiation center,” said the nurse. So I did. “We don’t do anemia treatment here,” they said. “Call your primary care physician.” My primary care physician said, “We’d feel better if you called your oncologist.” My oncologist hasn’t yet returned my call.

But I did learn that the four weeks of recovery that I’d been told? Not exactly the case. The radiation center assured me that it’s not unusual that I can’t move around much or get out of the house without assistance, saying, “It takes at least as long to recover from treatment as it did to get treatment.” Notwithstanding the fact that that sounds suspiciously like the “9 months up, 9 months down” bullshit that they told us about pregnancy fat, if I believe her, I won’t be back to normal for at least another 6 weeks. LOVELY.

It would be okay if I weren’t starting chemo the first week of August. ARGH. I have no idea how that will all work out, or whether I will be able to travel on our family vacation, up to see my parents, or out to Oregon for my brother’s wedding (which is ON my mind and pestering me, as I REALLY want to go!) in late August. It bothers me not to know. But I suppose not knowing is better than knowing I’d not be able to go. I’ll take it.

Oh, and about the PICC line? I don’t think these things were designed for homes with preschoolers, as bedtime and mealtime are now (unfortunately) punctuated with gentle reminders, “Don’t push Mommy, please,” and “Ouch!” The kids have been told not to crawl on me, and the little one is not to hook his “rescue rope” onto my arm or necklace, since the hook could catch on the catheter tubing and pull the dangling end through my vein. (Yuck.)

On the bright side, the PICC line allowed me to get my PET scan today, which will be read by the radiologist, sent to my oncologist, and she will tell me whether the cancer is gone or back just before BlogHer.

I’m betting on gone.

By the way, I just saw a lovely mention of Toddler Planet in D.C. Blogs’ FAQ: Are Bloggers Virtuous? Isn’t it lovely? Aren’t they darlings? That makes me smile six ways from Sunday.

routine anxiety

September 8, 2009

In less than 48 hours, I made a total of three trips to the General Hospital last week for tests and an appointment with my oncologist (I toyed with the idea of staying at the hospital all day one day but, with 4 and half hours between appointments, I chose to come home. This meant an extra bike ride up the really big hill that is Smythe Rd but I chose that as the lesser of two evils. Also, it’s reassures me enormously that I can meet that kind of physical challenge).

These appointments will probably never stop making me anxious but I this week they really stressed me out, perhaps because the timing was so compressed.

On Thursday morning, I had an echo-cardiogram.

That afternoon, I saw the oncologist (My appointment was set a week earlier than it usually is in the cycle and his nurse insisted that I come in for the appointment, as opposed to calling in. I had no evidence to back this up, but I became irrationally convinced that I was being called in to hear bad news of some kind – perhaps that my oncologist was breaking up with me or quitting medicine. Or moving to Florida. Or something).

And Friday morning, I had a CT scan.

All of these things are just a routine part of my life. But I don’t think they will ever feel routine to me.

Cross-posted (sort of) from Not Just About Cancer.

First Cycle: Xeloda & Tykerb (Medical Update)

August 26, 2009

(cross posted from Coffee and Chemo

The magic number for cancer seems to be 3.

So far, all my chemotherapies seem to be based on 3 week cycles (with the exception of the bone drugs, which are on a 4 week cycle).

Today, I completed the first 3 week cycle of Xeloda and Tykerb (Lapatinib).

Xeloda is taken every day, twice a day, 4 pills each time, for two weeks straight, then one week off.

Tykerb is taken every day, once a day, 5 pills each time, for the entire three weeks.

I meet with my doctor tomorrow to evaluate the first cycle.

I imagine things will continue pretty much the same for the next cycle.

I am super tired, but I do not know if that is from this regimen, or the radiation, or the previous chemo, or the Bar Mitzvah, or having a house full of guests for almost a month, or the beginning of school, or whatever. There are so many possible explanations; I don’t even know how to figure it out!

Besides that, I have the following side effects:

1. Low appetite (not the worst thing for me at this time)

2. Mild nausea (not too bad; no need for drugs)

3. Mild stomach upset — sometimes constipation, sometimes diarrhea (not too bad; when necessary, I take drugs to prevent diarrhea)

I am also very thirsty, but it might just be the heat.

I had a week of migraines, but they might have been because I was not drinking enough.

I keep forgetting things. That might just be because I have a bad memory. I feel like it is getting worse, but I cannot tell for sure.

I am still bald. I am getting used to it, but I still wish my hair would start growing back.

The bald thing is really hard on my kids.

I am in a bit of a slump emotionally. It could be from the whole brain mets thing or from my family leaving. Who knows?

I am so tired of having cancer. I hate the way it sucks up my energy.

For every hour of activity, I need three hours to recover. (There it is again, the magic number)

I just wish I did not have cancer.

I want it to go away.

The longer I live with the cancer, the more I am forced to face the fact that it is not just going to go away.

Tomorrow, I have to start taking all those pills again.

I hate it.

Please pray (or send happy, healing thoughts) for RivkA bat Teirtzel.

With love and optimism,

My negotiation skills still work

January 30, 2009

I am out of the hospital and home!  I woke up to the sound of puking, but it was not from me but from my little princess.  I think all the emotional separation has impacted her immensely.  The day wore on with more  throw up and soft bowel movements. I vow to call the doctor if it continues for more than 24 hours.  Sure enough, last night at dinner the dinner table had a near miss.

Oddly enough I was glad to be home and purposely there to rock my sweet child to sleep, and attend to her feverish red cheeks. It totally distracted my own pain, that is now a constant reality for me.

In the hospital they want to know on a scale from o to 10 how much pain you are in.  My answer now is 3 but in the lonely hospital with nothing else but myself to focus on was the same painful region an 8.  Diversion is not a cure for me but definitely a good home grown remedy to cancer pain. You could say it was another form of negotiation, but not with the doctors, but within myself.

One other negotiation was that I allowed my child to use scissors real adult scissors for the first time. But not to cut an ordinary piece of paper, no much more significant. My Hospital Arm Band!  It was a special occasion for both of us. Our little unforgettable moment. I have to make more unforgettable moments as soon as possible.