Thursday, May 27, 2010

The Light at the End of the Tunnel!!

It's been a long time coming and I must admit that there were times when I thought I would never see the end.

No...in case you think you missed something, I'm not there. But, I think I can finally see it. Today I completed my 12th and last treatment in my second round of chemo. Rounds one and two are completely behind me.

The day went well except for the fact that I now am experiencing totally unexpected critically elevated white counts which is a total turnaround for me. Dr. D. was flabbergasted to see that my white count had spiked to 31+. There have been times when it was as low as .04 which is basically non-existent. Normal is 3.5 - 11. Counts this high normally indicate a severe infection of some sort but I currently have no symptoms. They will be monitoring me very closly this next week, however, to watch for signs. In the meantime, plans are moving forward for Round 3. I will have 2 weeks off before starting treatment #1 on June 17. However, this will not just be downtime. Before then, I will have to undergo another MUGA scan to determine whether or not I have suffered additional heart damage during Round 2. If you recall, my last MUGA did show some deterioration of cardiac function from Round 1 but not enough, in the doctor's opinion, to discontinue treatment. I will also have more blood monitoring and will consult with the radiologist about beginning my radiation treatments.

That's right...this is a change from my originally scheduled course. Radiation was originally going to be done following the completion of chemo. They are now moving it up to run in conjunction with Round 3. I don't have a start date yet but it will be soon and will run every day for six weeks.

Other things I know - I will receive Round 3 chemo treatments every 3 weeks rather than every week, for nine months. Most people do not require shots for their white blood counts during this phase of treatment. Fatigue will, unfortunately continue to be a major issue. Things I sincerely hope - there will be fewer lfie altering side effects during this phase such as damaged taste buds and hair loss, drugs I have received over the past 6 months will slowly but surely leech themselves from my body, taking their poisoning and life-altering symptoms with them, and most importantly, that going off of these drugs will not allow any cancerous cells to remanifest themselves. Life will hopefully begin to return to normal. That said, my life will never again be what it was prior to October, 2009. I'm not sure how anyone could experience what I have over the past 6 months and not be changed forever by the experience. My attitude is different, my priorities are different, there is a deep-seated fear that will never leave my subconscious yet another deep-seated calmness and faith that realizes if I have made it this far I can summon whatever strength is required to complete this journey, however it may end.

In the meantime, I am excitedly celebrating this milestone and actually plan to enjoy a drive to Denver for an extended week-end to celebrate Brett's milestone of receiving his PhD in math after years of hard work toward that goal.

I will update you on white counts, MUGA results, radiation schedule, etc. as I know more. Oh, and one more exciting thing...I received my final charm today which completes my chemo bracelet. It's beautiful and so meaningful. Thanks Kelli, Matt, Michelle and Ken. I LOVE it.

Later.

Thursday, May 20, 2010

Some Things Are Just Hard To Explain

I read a book recently about how difficult it is for people who are close to a cancer patient to fully understand what they are experiencing. I believe this to be true because until my Dad had Cancer and now me, I really had little grasp of chemo, other than the fact that I hoped I would never have to experience it. Someone asked me the other day if chemo is like getting a shot and I realized that others are no different than I was. They just have no grasp of what chemo actually is or how it affects you. Since tomorrow is a chemo day again, I thought I would see if I could find any clear descriptions of chemo and some of its effects that I could share with you.
First of all, chemo is not like getting a shot. Not in my case anyway. Actually, there are many, many different chemo drugs and ways of receiving them. For me, however, it is intravenous, through a port that was surgically implanted. In a short procedure, the PowerPort* device is implanted, which means it is placed completely beneath your skin, and the catheter is inserted inside one of the large central veins that delivers blood to your heart. The PowerPort* device is usually implanted on the upper chest. Here is a diagram of it. You can see the port under the skin and the cap/needle that is attached when drawing blood or infusing chemo drugs.

In my case, I receive drugs through this for about three hours every week. This massive infusion of killer drugs results in many side effects. Some of the ones you may be least likely to understand include fatigue (that's right, it is not the fatigue you are familiar with), neuropathy and the inability to enjoy the taste of foods and beverages. Here are some descriptions I came across which may help this make a little more sense.

FATIGUE - (from the iccnetwork) 

Who We Are

We are among the majority of people who experience fatigue throughout our battle with
cancer. (1) It is a near universal problem that affects approximately three quarters or more
of us and is the most common side effect of our cancer experience. More than half of us
experience fatigue on most days, and it affects our daily lives more than pain or nausea.
Fatigue associated with cancer is not the kind that will disappear after we take a nap or get
a good night's sleep, but tends to be more severe and ongoing. For those of us who are
fortunate, our fatigue is mild and temporary. For others, it can last for months or sometimes
years after treatment and makes going about our daily activities nearly impossible.
The impact of our fatigue is profound and affects our ability to work, walk short distances,
be intimate, and meet the needs of our families. We often have difficulty performing even
the most simple of tasks such as cooking, cleaning, or taking a shower. Some of us experience
difficulty concentrating or making relatively simple decisions. It even causes us to
feel distant from our friends and our social networks.
We call our specific type of fatigue CRF (cancer-related fatigue). It is one of the most debilitating
yet least understood or addressed side effects of cancer treatment. (1) Although the
majority of us as patients experience fatigue, it is also one of the most overlooked and
under-treated side effects of cancer. In fact, CRF is now the most important untreated side
effect of cancer today. (2) It is by far the most problematic symptom that affects our overall
quality of life. We feel completely exhausted - physically, emotionally and mentally.
The exact cause of our CRF is unknown. Sometimes the root of our fatigue is caused by the
cancer itself; in other instances, it is caused by the treatment. What we do know is that cancer-
related fatigue can be caused by a variety of other factors such as dehydration, depression,
anemia, electrolyte imbalances, decreased nutrition, and medications. (1) There is often
more than one contributing cause. It is not predictable by tumor type, treatment or stage
of illness. Usually, our CRF comes on suddenly, does not result from activity or exertion,
and is not relieved by rest or sleep. We often describe it as "paralyzing" and it may continue
even after our treatment is complete.

NEUROPATHY - Neuropathy is the medical term for nerve damage, usually to the peripheral nerves in the hands, feet, arms, and legs. Chemotherapy drugs are toxic to healthy nerve cells, as well as to cancer cells. When those nerves begin to stop working, the result is tingling, numbness, weakness, and pain, even an impaired sense of touch.


Loss of feeling in the hands and feet can make it hard to pick up small objects and cause clumsiness and difficulty walking. Some people with nerve damage first notice a "pins and needles" feeling, not unlike when an arm or leg falls asleep.

TASTE CHANGES - There are 4 main types of taste: Sweet, sour, bitter, and salt. Sense of taste is primarily located on the tongue. Each type of taste is located within taste buds on different sections of the tongue. As you chew your food, it mixes with saliva and as it comes in contact with the taste buds, messages are sent to the brain regarding your sense of taste. The brain processes the messages and helps you identify different tastes. Taste changes are common during chemotherapy. The exact reason for taste changes is not clear, although it is thought that it is a result of the damage to the cells in the oral cavity, which are especially sensitive to chemotherapy. About 50% of patients getting chemotherapy experience taste changes. Most people report taste changes involving a lower threshold for bitter tastes and a higher threshold for sweet tastes. Some drugs also produce a metal taste during the actual intravenous infusion. In addition, the association between taste of food and chemotheraphy may lead to taste changes. Chemotherapy loss of sense of taste can occur purely from the association of an experience of nausea and vomiting with chemotherapy. Taste changes may occur during therapy and last for hours, days, weeks, or even months after chemotherapy.

Found another chemo patient blog and she described it thus...But then, after a week or so, you start to notice this taste in your mouth. Little do you know you won't be able to rid yourself of this taste/smell until your chemo is done. It's not altogether unpleasant at first, it's metallic, but that's its only similarity to anything else I can imagine. As more time goes by, this taste is more and more disturbing. It's especially noticable when you're actually getting the chemo done (and some kind of strongly-flavored food is required to help ease it), but it's noticable all the time. It makes you feel sick. Whenever you visit the restroom your urine smells like it too. No matter how much you eat or drink, that taste is ever-present.

Don't know if these descriptions help, but I do realize that the scope of these things is hard to comprehand so thought I would give it a try. Anyway, tomorrow is treatment #11 in Round two. Not looking forward to six hours at the Cancer Center, but being one step closer to the finish line is always a positive. Hope you have a great Friday and a beautiful week-end.

Later.

Thursday, May 13, 2010

The Card

The other night I was watching The Biggest Loser. One of the contestants, Michael, started the competition at more than 500 pounds. Over the course of the last 17 weeks he has managed to drop more than 200 pounds...an amazing accomplishment. However, it was starting to hit him that in spite of the progress he has made he still has a tremendously long journey ahead of him since he still weighs more than 300 pounds. That realization was starting to drag him down mentally and he had an absolute meltdown trying to process that.  I can relate to what he is experiencing.

I have been counting down the treatments in this second round of chemo since the day I started. I am ecstatic that I only have a few left. Still...last week-end, at the Susan Komen Race for the Cure, there was a lot of talk about "next year" and it suddenly occurred to me that "next year" I would just be finishing my treatment schedule. Now, many of us are all too familiar with the fact that the older you get the faster time seems to fly by. Still...a year is a long time no matter how you look at it. And, right now, it seems almost insurmountable. Thinking about it can easily send you to a dark place. The key will be what the last round of treatments is like. Will there be all of these side effects? I don't know. I just know that, like Michael, the picture of how far I have come is starting to pale in comparison to how far I can see that I still have to go.

I am ready to stop spending the bulk of my life at the Cancer Center. I am ready for my bones to stop hurting. I am ready for my mouth to not be stuck shut when I wake up in the morning because the chemo is so drying. Same for my eyes...I am ready to not have to pry them open in the morning because they are so dry they feel like sandpaper. And the fact that I have no eyelashes only makes it feel worse. I am ready to not have cramps that turn my stomach and abdomen to hard rocks. I am ready for my hands and feet to no longer be numb. I am ready to call Candace and schedule an appointment to get my hair fixed. I could scream for just one bite of something that actually tastes good. I am ready to relax on the patio and actually enjoy sipping a glass of wine. I am ready to be done with getting shots two days a week because my white counts are low. I am ready to have a meltdown too...but I won't. And, I won't because of things like this that keep me going...

Last Sunday my grandaughter made me a card. I am SOOO glad that she doesn't yet consider herself too old to do things like this. She made me a Mother's Day card with pink ribbons all over it and a little poem that she wrote.
Life is good. I will go to the Cancer Center on Friday and I will be infused with drugs which will put me one treatment closer to being finished with Round Two. Hopefully it will go well, and hopefully Round Three will be easier and at least some of the side effects will disappear at some point. And, eventually, I will be finished. No meltdown necessary. I may have cancer but, on so many levels, I am truly blessed.

Later.







Monday, May 10, 2010

Big Week-end

Wow...what a busy, jam-packed week-end. It started on Friday, with chemo, of course. Another lady had a major reaction to her treatment while I was there and had to be taken to the hospital via ambulance. That is always disconcerting. Hope she is OK. My treatment was all in all uneventful, thank goodness, though we again spent about six hours at the Cancer Center.

Then Friday evening, Sue and Ron arrived from Denver. We had a quiet evening followed by a busy day on Saturday gearing up for Race Day and then a family get-together that evening.  Sunday, of course, in addition to Mother's Day was the Susan Komen Race For the Cure. I owe so many people, including many reading this blog, a huge thank you for your generous support. Thanks to you, our team placed 7th and was able to contribute more than $2900 to the Susan Komen Foundation. I, personally, earned first place in the individual fundraising with a grand total of $2310 in donations. Thank you so much. I am pleased and happy to say that I not only was able to join my team in the walk but was able to finish the short course which was one mile. Quite an accomplishment for me right now.
And now, just three treatments left in round two. Hurray! Shots this week again so that means more bone pain but...

One last time...thanks to all of you for your generous support. I've said it once and I'll say it again...I may have cancer but I am truly blessed.

Later.

Thursday, May 6, 2010

Here we go again...

Tomorrow is Friday already...not my favorite day of the week. Each time the cumulative effects seem to get a little worse. My legs still hurt from last week. In fact I woke up at 3AM today and between the leg pain and the neuropathy in my hands and feet, I was unable to get back to sleep for several hours. My problems with appetite seemed to get worse this week as well.

I am nervous about the new drug I will be getting tomorrow. I'm glad that it is less likely to advance the neuropathy because it is bad enough right now, but the unknown effects are just something I always dread. I really want to feel good on Sunday and it is never one of my better days as it is. Susan will be here tomorrow evening so that will be fun. We have several family get-togethers planned for the week-end. Our team for the walk has grown to 13 strong and they are pumped up and ready to go. I really owe a big thank you to them and to all of you who contributed to the cause on my behalf. Thanks to my very supportive and generous friends, family and co-workers our team raised more than $2900. AWESOME. Thanks so much. You're the best! And that is what I will focus on tomorrow during my treatment. As I've said before, I may have cancer but I'm still very blessed.

Later.

Saturday, May 1, 2010

Yet another twist...

So, how did yesterday go?

Well, my counts were back up enough to receive treatment so that was good. The bad news? The neuropathy has advanced enough that Dr. D. has decided to take me off of Taxol effective next week and try a similar but different drug. The new drug is less likely to cause or worsen neuropathy. However, it does cause more fatigue and is harder on your white counts, both of which are also issues for me. I also will have to be on steroids for three days rather than two as I am now to help prevent reactions. Because of the white count issue, this week I will again be on shots, which means incredible bone pain. I am a little concerned about dealing with a new drug right before the Race for the Cure. I really want to be able to participate with my team. But, hopefully, all will go well and I will feel OK and have the energy I need to do all that I want to do. And, the really good news is that regardless, I am now down to just 4 remaining treatments in round 2. And, that is a GOOD thing.

One last reminder that there are still a few days left to contribute to Komen for the Cure...until May 4. I am passionate about this, not for myself...I already have breast cancer...but for you, for someone you love, maybe for one of my daughters, my daughter-in-law or my grandaughter. My hope, wish and prayer is that some of the funds raised right here help assure that none of you ever have to go through this. Large donations are not required. Every dollar makes an impact. It's easy to donate online...just click here.

Hope you are all enjoying your week-end. The sun is shining and spring has definitely sprung. It's uplifting.

Later.