The Truth About Side Effects

Sunday, May 3, 2009

I will begin by apologizing to the readers who have been clammering for more--it's been days since my last post. I will warn you in advance, however, that this will likely be a far cry from my a last post, which I lovingly consider to be a brief tribute to our own version of the movie Outbreak, except without any real medical problem to fear. Today, it's back to cancer...primarily.

This week is an "off week" in my treatment schedule and though my term seems counter-intuitive, that means it's a "good week." Chemo weeks are "on weeks" and since I have 8 treatments over 16 weeks, that means that I have one "on week," one "off week," one "on week," one "off week," and so on. Now that I am fully through two full cycles and prepping to go in for chemo again tomorrow, I feel I'm becoming well-versed in all the many side-effects that my pile of prescription pharmaceuticals can and do cause.

That said, chemo is a little different for everyone in a lot of ways, both emotionally and physically, but it appears to be pretty standard for everyone in a lot of ways as well. So, today, I am going to give you the truth about side effects as long as you keep in mind what I just said..."chemo is a little different for everyone..."

As I said, this week is an "off week" and just as was true in my last "off week," I'm battling random infections and general aches and pains (recall the elbow incident). This time around, it is not my elbow, but my left thumb, my lower back, and a silly infection that I'm going to refer to as a "pre-kidney" infection because there are limits to what I will publicly discuss (take from that what you will). All these problems combined become worrisome after a few days and it inspired me to go in for an appointment with my doctor's nurse practioner, whom I LOVE, by the way.

Just as I thought, all of these are NORMAL and EXPECTED side effects!!! My thumb appears to be arthritis, which now makes them believe that my elbow might have been as well, thus suggesting that I may have rheumatoid arthritis (as brought on by the chemo)...we're keeping an eye on that in coming weeks. My lower back, which hurts so badly ALL THE TIME that it can only be managed by mixing meds--half a Vicodin with two ibuprofen, lather, rinse, repeat--is a totally normal side effect of my Nuelasta, a drug that is supposed to rebuild bone marrow and wide blood cells. It's supposed to be good for me and I an only manage the side effects with Vicodin. Nice. That one causes bone pain, particularly in one's hips and lower back, thus, my lower back pain. Additionally, it causes my hips to pop out of place and back in and causes intense shoulder joint pain. Fun AND exciting! As for the random infection...I'm suppposed to expect that to happen EVERY off week. We're managing that with MORE prescription medications and some over-the-counter stuff as well.

All that is apparently pretty mild. In order to prevent this post from being too ridiculously long, here's a list of my side effects from on and off weeks so far:

"On week" -

• Nausea
• Vomiting
• A 4 day headache that can only be managed with Vicodin
• Extreme exhaustion which causes me to sleep about 10-12 hours each night and take naps during the day
• Lack of appetite
• Strange taste in my mouth at all times
• Constipation (sorry...getting a bit graphic)
  
• "Chemo brain," a real thing, not a term I made up, which basically refers to my inability to remember details and the fact that it takes me much longer to process what is going on around me--general confusion and forgetfulness, basically
• Bone and joint pain brought on my the Neulasta
• Muscle fatigue
• Extreme sensativity to the sun
• Hot flashes
• A general screwing up of all things hormonal - changes in body temp, breakouts, etc.
• Susceptibility to illness due to WBC being low
• And of course, hair loss
  

"Off week" -

• Exhaustion
• "Chemo brain"
• Bone and joint pain
• Sun sensativity
• Hot flashes
• Hormonal changes
• Susceptibility to infection
• Susceptibility to illness

Now, with all of that, would you believe that I consider myself very fortunate???? These are all NORMAL side effects--managable side effects--and hair grows back. There are plenty of scary things that chemo can cause (long-term heart damage or infertility for example), but at the moment I'm taking each one as it comes and so far everything that has happened can be fixed easily with meds. It's the ones that can't that you need to worry about!

They truly get better and better and minimizing the side effects for the patient and chemo isn't always as bad as what you see in the movies--they play it up to enhance the drama as they do with everything. Yes, I'm a little more delicate (and I don't think ANYONE would have referred to me as delicate before), but I am by no means frail! So for all of you who have a family member going through this now or in the future, or God forbid for all of you who are going through this, or will go through this yourself--take it a day at a time. It IS manageable! Find doctors you trust and a treatment plan you can get behind and you will come out on top!

Take care all...I'm out after a lengthy post. The in-laws are in town and we have a fun day ahead of waffles, plaza shopping, and spending time together! A perfect Sunday!

Love to you all.

The Week of the Ambiguous Breast Lump - Day 1

So, I am embarking on my first blog post for this particular journey, but to really start from the beginning, I'm going to have to start about 2 weeks ago. It may take me time over the next week or so, but I will catch you up to present day soon enough.

Tuesday, March 24, 2009

7:00 am - Wake up. Get in the shower. Find suspicious round red rash on breast. Touch suspicious rash, find MORE suspicious lump underneath. Freak out slightly.

7:10 am - Step out of shower. Find that suspicious rash has even more suspiciously disappeared. Think to myself, rash gone...lump gone too? No. Lump remains. Call Joe (the husband) in for first consult. Verified. Lump, indeed. Cry immediately.

8:00 am - Try calling OBGYN's office to set up immediate visit. Pointer: While the rest of the working world in the Midwest begins work by 8 or 8:30...doctors and their staff seem to think that 9-5 with a non-working lunch is a better way to go. Irritated and frustrated, I then wait until 9:00 a.m.

9:00 am - Sneak out of office to make semi-embarrassing, highly-personal phone call. Finally convince scheduling assistant at front desk of practice that I absolutely SHOULD be seen today and I'll see anyone! I get in with a nurse practitioner.

10:30 am - See Nurse Practioner for second consult, first medical consult. Yes, indeed...suspicious lump. Cry some more. Relatively nice lady out front schedules me for mammogram and breast ultrasound that afternoon.

1:00 pm - Arrive at new medical facility for the fun to come. They cover you in a lovely full length gown so that you may modestly frolic about, so you're thinking...this can't possibly be too bad...despite all the horrors of mammograms your mothers and grandmothers warned you about. Spoiler alert: Guys skip the mammogram section if this is more you ever wanted to know about what your mothers, wives, girlfriends, fiances, sisters, and grandmothers have gone through, will have to go through, or are currently going through.

The Mammogram - Okay, so you're shuffled into a room with ambient lighting in your modest floor length ground, though you only have to undress waist up, and that's where the modest ends. A young woman, who I am sure is very lovely if you were to know her on a day to day basis, yanks my arm out of the sleeve, grabs my breast like she's carrying a turkey breast to the oven to be cooked, sets the breast on a cold piece of plexi-glass and starts mushing it around. If this is not awkward enough, she then brings a second piece of glass down on top of it to squish it further. I believe mammogram technologists must be those individual whos, as children, were able to squish the playdough the flattest and have subsequently turned that into a career. Then, after asking you stand in very awkward positions, meanwhile not wearing any deoderant as they say it can mess up the pictures, she's ducking under your undeodorized arms and shifting your whole body and you boobs into the most uncomfortable positions your body has ever had to endure. Then, they do the other one. Then they do each of them from 2 more angles. They keep asking you to breath normally before the picture is actually taken, but really...who could? Huge relief when that portion ends.

The Ultrasound- Slightly less ridiculous than the mammogram and hardly worth mentioning...it's the same kinda thing they do to see babies in the whom. They look at the lump from different angles, then they check out the lymphnodes in the armpit. Aside from the part where I had to be groped by yet ANOTHER individual...could have done this part all day. No biggie.

The Results - The radiologist came in shortly after having looked over the mammogram films and the ultrasound films, he brought a female nurse with him who held my hand. THIS WAS MY FIRST CLUE!!!! Cried some more. He categorized my mammogram finding has more likely to be malignant than benign and thus refferred me to a surgeon for a biopsy. Cried a lot more. They then provided me with my own copy of all the films and the radiologist's report so that I would have it to show to the surgeon. I did something horrible wrong (or right) here. I tried to interpret the report by going onlin and googling all the medical phrases I didn't understand. The end result you may ask? By the end of Day 1, I was pretty positive that I had cancer and no one around me was willing to tell me yet, being that a pathologist had not yet looked at a tissue sample. So...the day ended after 5:00 (let me remind you all doctor's offices are closed by then) with more waiting until I could schedule the next appointment, with the surgeon, who would then have to do a removal biopsy himelf, or refer me to YET ANOTHER doctor for a needle biopsy.

5:30pm: Home for the day. Lots more crying. Told only Mom, Dad, and Husband at that point. No need to worry anyone else. Afterall, EVERYONE and their dog kept telling me, "Don't worry, 85% of these turn out to be benign."

12:00am: Still can't go to sleep. Time to mix wine with pharmaceuticals. Half glass of wine and a Tylenol PM knocked me right out.