Wednesday, April 29, 2009

Rant

April 29, 2009

My upbeat, positive-sounding update is the post below this one. This blog is for everyone who thinks I am inspiring, strong and handling this well.

Some nights I don’t sleep. Like tonight. I slept from 10 p.m. until midnight and I’ve been tossing and turning ever since. It is now 3 a.m. And I am going to my 5:45 a.m. spin class if it kills me. It probably won’t kill me, but I won’t be able to finish it and then I’ll be cranky all day because of it.

I take 13 vitamin pills a day in hopes of staying healthy through all this and fending off a recurrence once my treatment is through. In the morning I take a multi-vitamin, vitamin D, a digestive enzyme and a fish oil capsule. I also mix a teaspoon of glutamine into a glass of water and drink it. At lunch I take another digestive enzyme, another fish oil and a CoQ10 pill for my immune system. At dinner it’s another multi-vitamin, another fish oil, another digestive enzyme and more glutamine. Before bed I take two calcium/magnesium capsules and a blood thinner. I rarely make it through the day without forgetting to take at least one group of pills.

Every week or so I read something or visit with a doctor who tells me “studies show” that this, that, or something else has been proven to keep my type of tumor from coming back. So I cut out sugar. And caffeine. And alcohol. I’ve eliminated practically every treat I love so I can keep my fat intake to 32 grams a day. And now I am anemic, so I feel compelled to add meat back into my diet. But then my fat grams will exceed the 32-grams-a-day limit. So I consider iron-rich spinach. But the Vitamin K in spinach tends to thin the blood, which could interact with the effectiveness of the blood thinner I take. As a result, I am constantly overwhelmed and feel like I am eating something wrong.

The soft tissue in my body is irritated from the chemo. Scabs in my nose bleed every morning when I blow it. I’ve had a sore throat for four weeks. I’ll spare you the details of my issues with soft tissue in other areas. I have a rash on my face and my eyes sting for several days after the infusion.

I feel dreadfully ugly much of the time. I’m completely bald and wear a wig every day, except at the gym, when I wear a scarf covered by a cap. And I feel like everyone – or no one – is staring at me. My wig is starting to look dingy and frumpy. I’ve lost a good deal of muscle tone and feel fat. I have an ugly red scar where my breast used to be. I used to feel pretty but I don’t anymore.

I never used to read the obituaries, but I do now. I scan them to find the photos of women who look my age. I read until I find out why they died. Nine times out of ten, it says “breast cancer.”

I’m still pissed we missed our wedding in Hawaii. We not only missed out on two weeks of sun and relaxation, but also a once-in-a-lifetime chance to gather with our families and closest friends in paradise. I’m so angry about this, but have nowhere to place my anger.

When I think about how much longer I have to be in treatment, I feel deflated. I’m still counting up, not down.

Even though the initial panic of having cancer has subsided, it’s always there. It is never far from my mind. Thinking about it is so very. Very. Very. Exhausting.

So there’s the real story. Inspiring? I think not. Normal? Probably. As bad as it sounds? Not really – I just feel the need to vent when I don’t get enough sleep.

Tuesday, April 28, 2009

Two down, 10 to go!

April 28, 2009

Today was my second of 12 weekly Abraxane appointments. I handled the first one very well and expect that the second will be similar. I did not have the chemical, drugged feeling I had with the AC treatments, but I was more tired than I had been with past treatments. My blood draw indicated that I am anemic, which probably has a lot to do with the fatigue and low energy. My red blood cell numbers are supposed to be between 36 and 45 and mine are 28. My oncologist is “keeping an eye on it” for now and hoping they come back up next week. In the mean time, I will be trying to eat meat, spinach, beans, iron-fortified cereal and other high-iron foods. I don’t usually eat much meat and have continued to stay away from it since I am supposed to follow this low-fat diet. This complicates things, but vegetarians manage to keep their iron up without eating meat, so maybe I can too. If my counts drop further, I will need a blood transfusion. Ugh – I don’t want to even think about that.

My neighbor Andy and I signed up for a six-week meditation class on Monday nights. My first class was last night and I think it will prove to be really helpful. The teacher spoke a lot about living in the moment and experiencing life now, instead of altering the experience with thoughts of the past and future “what ifs”. I am the worst offender: “What if the cancer comes back?” “What if these infusions make me more and more tired every week?” “What if…?” I am trying to learn to do what I can to stay healthy, then stop creating anxiety by thinking about things that are out of my control. Easier said than done!

The trip down south to Vancouver was a great recharge. Oliver had a blast playing with Tami’s kids and I, of course, enjoyed visiting with my former college roommate. We’re planning another trip soon – this time on the train! We went to a fun birthday party Saturday night in Camas where I met some members (Tami’s friends and former co-workers) of my “StompThis” Vancouver Fan Club! A shout out to all my faithful readers!

More appointments and general health-related things this week and next, with a few lunches and get-togethers with friends thrown in. I received three freelance job requests today, so I am starting to ramp up my work a little more. Fingers crossed that I can keep those red cell counts up and stomp the remaining 10 weeks!

Wednesday, April 22, 2009

Abraxane Update

I had my first Abraxane infusion yesterday. This was the first of 12 weekly infusions, and it marks the conclusion of the prior eight weeks of two different chemo drugs. So far, the promises made by the doctors, nurses and past patients have been true - the side effects are pretty mild. A small amount of pre-meds were put into my IV before the Abraxane, which are expected to last two days. The chemo medicine itself was very minimal - instead of a big bag of drugs coupled with two tubes of red liquid, the Abraxane is a tiny pouch of cloudy yellow liquid. Much less ominious than the "red devil." By Thursday those will wear off and I will feel the side effects, if any. With this drug I do not have to take any anti-nausea meds by mouth, so hopefully that will eliminate the mood swings and chemical-ly feelings I experienced with the first round.

The side effects that most people experience with this drug are fatigue and mild neuropathy (tingling) in the fingers and toes. At the encouragement of both my naturopath and my oncologist, I have been taking Glutamine powder twice a day to offset these symptoms. The neuropathy is cumulative, so typically people start feeling some discomfort by the third week of treatment. If it gets too painful, the chemo dosage is reduced the following week. If the neuropathy is not monitored, it could become permanent. I have hope that the Glutamine - as well as the reflexology treatments I've bumped up to one a week to stimulate the nerves in the hands and feet - will keep this from becoming a problem.

As long as I feel good, Oliver and I are planning to head down south to Vancouver this weekend to visit my friend Tami from college, as well as her husband, Rich, and kids Megan and Spencer. We'll load Oliver's bike into the car and hopefully spend the weekend watching the kids ride around in the cul de sac while we visit, rest up, and maybe even do some cooking.

Friday, April 17, 2009

Prevention information and radiation

Yesterday Jason and I met with a radiologist to help us decide whether or not I will need radiation treatment following chemotherapy. As mentioned in my previous post, radiation is recommended if the tumor is bigger than five cm with more than four cancerous lymph nodes involved. Long story short, this radiologist recommended radiation for me (and for anyone with any lymph node involvement at all, per two new comprehensive studies). More on radiation later.

The most interesting part of the two-hour consult was not that recommendation, however, but the doctor’s wealth of information regarding diet and lifestyle for women with triple negative tumors (like me). Only 15 percent of breast cancer patients have these types of tumors, which are not fueled by estrogen. Most of the things you hear on the news and in magazines about breast cancer pertain to the 85 percent of women with estrogen positive tumors. While estrogen fueled tumors can sometimes be attributed to things such as having children later in life, taking estrogen supplements or not breastfeeding, tumors such as mine just seem to happen for no reason other than a freak mutation. The doctor also said that the tumor had probably been growing for 10 to 15 years.

There are a few crucial things that have been proven to help kill these cancer cells and keep them from returning. The first, of course, is chemotherapy. Apparently going through chemo is pretty crucial for women with triple negative tumors, since any of these fast-growing, aggressive rouge cells that may have been floating around after the mastectomy respond particularly well to chemo. This was good to hear, since at times I have wondered if I really needed to be going through all this. Also, a low-fat diet (less than 32 grams a day) has been proven to keep triple negative tumors at bay. Bye bye, Starbucks scones (sniff). High doses of Vitamin D are also very important. Apparently, virtually NO ONE in the Pacific Northwest has enough Vitamin D in our bodies, since we get it from mainly from sunlight. Did you know our region has one of the highest rates of breast cancer AND multiple sclerosis, both which have been linked to low levels of Vitamin D? Even when it is sunny here, we don’t get much D since we are far from the equator. The radiologist suggested trips to southern California and spending 20 minutes in the sun before applying sunscreen each day. I asked if Hawaii would work, and he said absolutely! Thirty minutes of Hawaiian sun gives your body 20,000 units of Vitamin D, which is stored in the body and is beneficial for months. Isn’t that enough reason to go? Most people taking Vitamin D supplements get only 1,000 units a day, which still is rarely enough. At my next blood draw, I am getting my Vitamin D levels measured so I can make sure I am getting plenty. Vitamin D is also important in the prevention of other types of cancer, so men should take note as well!

We also discussed breast cancer screening methods for younger women. For those with dense breast tissue, mammograms are NOT ENOUGH! I am the perfect example. I had a mammogram one month before I found this tumor myself. Typical mammograms just can’t see through dense tissue, and the health care community has not done anything yet to respond to this issue. So ladies, it is up to us to watch out for our own care. A DIGITAL mammogram is better than conventional mammograms at picking up problems, so ask for that when before you schedule your appointment. And if the mammogram sees anything worth looking at twice, don’t settle for a just a follow-up mammogram. Demand an MRI, which uses magnetic imaging to see even the smallest beginnings of a tumor. They’re expensive, though, and it’s likely your health care provider will try and talk you out of it. So throw a fit. Cry if you must. Act paranoid and unstable so that the doctor’s only choice is to schedule an MRI, lest you start stalking him at his home. Offer to pay for it yourself. This is your life. I was called back for a second look at my right breast one year ago, and had only a second mammogram. The results showed that the suspicious area was only a shadow on the film. Well, tat “suspicious area” was in the exact same place as the tumor that I found a year later. I try not to think about where I would be today if I had known what I know now and insisted on an MRI. I’m pretty sure I would have ended up having only a lumpectomy and no chemo. It’s difficult to look back at that time, because this cancer would have been caught early had more detailed screening methods been used.

Regular breast exams by someone who performs them more than 10 times a day is critical as well. Experienced doctors know what to look for and know what cancer feels like. Do your homework and make sure your care provider is experienced.

So, back to the radiation issue. I will be undergoing radiation once the chemo is complete in July. Studies show that there is a 22 percent chance of recurrence in the chest wall. Radiation that is administered well can take that number down to two percent. It will likely start three weeks after my last chemo session. I’ll be getting treatment five days a week for six and a half weeks. Each session lasts only about 10 minutes and side effects are minimal (some fatigue and a sunburn on the treatment area). A CT scan is performed first to plan the radiation field.

That’s the latest. I start my second round of chemo treatment on Tuesday the 21st. Here’s hoping the worst is behind me!

Friday, April 10, 2009

Infusion Update

April 10, 2009

My fourth of four AC infusions was Tuesday and it was a doozey. I am so thankful that the next 12 are supposed to be much easier. I can’t imagine another going through more infusions like the AC. It hasn’t been terrible, but this last one certainly has been the toughest yet. The drugs tend to build up in your system, so the severity of the symptoms came as no big surprise. I hadn’t been too affected up until this point, but the nausea has been pretty constant this go-round. I am trying hard to remember that within a few days it will subside and I will feel back to normal again.

There’s been a slight change in the treatment schedule. I still have 12 sessions to go, but instead of taking the drug Taxol, I will be given something called Abraxane instead. The base drug is exactly the same, but the difference is the type of drug that accompanies it. With Taxol, a toxic solvent is used to dissolve the Taxol so that it can be effectively broken down and delivered to the cancer cells. This solvent can be pretty hard on the system, so patients are typically instructed to take massive doses of the steroid Decadron (to control nausea) the day before and the day of the infusion. Abraxane, on the other hand, does not require such a toxic solvent to break down the drug, so very little steroid is required. During the AC infusions, I have been taking Decadron for four days after the infusion, slowly tapering off by the weekend. I hate the effect the steroid has on me, and I have complained to my doctor about it. This is why he decided to switch me to the Abraxane for these next infusions. Apparently Abraxane is a newer drug than Taxol, but it has been showing very favorable results. I also have heard it is quite a bit more expensive than Taxol, but I expect that my insurance will cover it – they’ve been great so far with all the treatments and expenses.

I am really happy to have been switched to this different drug. By all accounts, this second phase (even if I was taking Taxol instead of Abraxane) is supposed to be much easier to deal with. According to my doctor, there will be no medications to control nausea, as it is rarely an issue. Many patients experience neuropathy (tingling) in the fingertips and toes. Both my oncologist and naturopath have suggested taking Glutamine – a powder that you mix with water and drink twice a day – to offset the symptoms. I have started taking this in preparation for the Abraxane infusions, which will be Tuesdays starting April 21.

Jason and I are celebrating the end of this first round of chemotherapy with dinner at Canlis on Saturday, April 18. For those of you unfamiliar with Canlis, it is considered the best restaurant in Seattle (http://www.canlis.com/). It will be a treat, but one that is well-deserved. It will mark the end of Phase I and the beginning of the countdown to the end of this entire ordeal.

Still a possibility once the chemo is through is radiation therapy, which is usually a cut-and-dried decision. Radiation is usually prescribed for breast tumors that are bigger than five cm with more than four cancerous lymph nodes. I do not fall into that category, but one of my two cancerous lymph nodes was 5 cm – almost twice the size of the breast tumor and a bit of an anomaly. My oncologist took my case to a board of his colleagues, who did not come to a consensus on radiation treatment. So, I have made an appointment to consult with a leading radiologist at Evergreen Medical Center in Kirkland on April 16. I am hoping he can shed some light on the subject. If radiation is recommended, I would be receiving daily treatments of radiation over the course of about six weeks. Each treatment is only about 10 minutes, but what a hassle! Radiation also causes some fatigue and burning to the skin. But if it is recommended, I will go through with it.

I want to thank all my escorts who have made my chemo treatments much easier by keeping me company! My next six infusions have been scheduled and I already have a terrific team signed up to accompany me on many of the days. It’s hard to put into words what a support you have all been for me during this time. I always knew I had a terrific group of friends and family. Things like this just make it all the more clear.

Wednesday, April 8, 2009

Stay Abreast Update

Sheila has completed the first four MAJOR chemos. I saw her today and she is still moving through this ordeal with grace and poise (as is her mom who looked beautiful this morning herself). Bless them.

I've updated Sheila's next round of chemo appts. They are her abraxine infusions which she will elaborate on in another post. Please see the schedule and escort needs in the "Stay Abreast" tab on the right hand side of this blog.

I know you will continue to keep her in your thoughts, hearts, prayers, etc. Last night Sheila had a great deal of nausea (she had chemo yesterday) and thanks to her mom and her aunt (who is a pharmacist and could offer some solid advice) she managed to take an anti-nausea pill and feel somewhat better.

All for now...k