Looooonng Overdue Update!

Well, my how time flies! This update is long overdue.

I really should have written this update withing a few weeks of my surgery, but somehow, time flew by.

So after the surgery, I was in the hospital overnight, and was released less than 24 hours later - which seems crazy! Truthfully, I was ready to leave. My husband and I stayed at the American Cancer Society Hope Lodge in Omaha, Nebraska, just a few blocks from the hospital. After I was released, we went back to the Hope Lodge for the rest of that day (which was Friday). On Saturday morning we kind of chilled out and watched the ISU football game, and then checked out and headed back home.

I had been warned by many survivors to bring a pillow to put between my chest and the seatbelt, but truthfully, I wasn’t in a huge amount of pain (of course, I was taking pain meds at the time though). We stopped and saw some family on the way out of town, and then I think I slept most of the way home.

I was sent home with three drains in - one on my non-cancerous side and two on the cancerous side. The drains were probably the most annoying part of the whole recovery. Almost all my pain came from those darn drains! If I moved wrong they would pull on the stitches that held them in.

Two weeks after my surgery, I went back to my surgeon and found out that all 3 of the lymph nodes that she removed were positive for cancer. Darn it! All of my doctors believed that my lymph nodes hadn’t been affected. Nothing showed in any of the scans. The good news was that there was nothing in the opposite side - so it hadn’t moved.

So another surgery was scheduled for a week later - to remove all the lymph nodes on my right side. At this point, I had been able to have two of my three drains removed, but still had one in. They took that drain out during the second surgery, but put a new one in after removing the lymph nodes. Oh joy. This surgery was not as extensive as the mastectomy. Because the surgery was late in the day, they kept me overnight and I was released the next morning. We headed back home to Ankeny, again.

Treatment Changes:

With the new development that the cancer was in my lymph nodes, even after chemotherapy, this changed the plan for my course of treatment. I was immediately referred to a radiation oncologist because I would now have to go through radiation. It was also recommended that i take another course of a less harsh chemo in the form of a chemo pill after the radiation was done.

If there was one type of treatment I wanted to avoid, it was radiation. I’d read a lot about it, and I was very worried about the possibility of other cancers 15-20 years after the radiation treatment. Much more serious cancers such as lung, bone and esophageal cancer. If I had been much older when I was diagnosed, I wouldn’t have been that worried about these other side effects. However, being only 39 - I was extremely worried about this possibility, but every doctor recommended the radiation. I had to place my trust in God and the advances of medicine that they had made large strides in preventing these secondary cancers.

Radiation:

I had 25 daily radiation treatments. One of the most prominent side effects of radiation treatment is the effect it has on the skin and underlying tissues. My radiation oncologist provided me with several options to help protect my skin during the radiation process. I ended up choosing a process that used a specific film called Mepitel. The nurse applied the Mepitel in several pieces to my entire chest area before radiation treatments began. It was sort of like having plastic wrap stuck to my skin. The mepitel stayed present for the entirety of my radiation treatments - which meant for about 7 weeks (5 weeks of treatment and 2 weeks following treatment) I couldn’t get my upper body wet. Thankfully, I didn’t have much hair at the time to worry about having to wash it! I got pretty good at taking what I refer to as “half showers” where I could avoid getting water on the top half of my body. I also got pretty good at washing what little hair I had by standing up and leaning over. (Nothing like getting my stretches in!).

Well, the inconvenience of the mepitel seemed to pay off. Yes, my skin burned, I had a few sections that got particularly crispy (literally!), but all in all, I’m told by the nurses, my doctors, and my physical therapist that my skin looks great compared to some others they’ve seen. I have to say I am happy with how it healed up.

CAPECITABINE

So after the radiation treatments were complete - my next treatment phase began. This was a drug called Capecitabine (generic for the name brand Xeloda). This is commonly referred to as a “chemo pill.” It is an oral form of chemotherapy. My oncologist wanted me to use this line of treatment as more of a preventive measure against a recurrence. I took pills twice a day for two weeks on, and then a week off. I repeated this cycle for 8 rounds. The general thought is that if there were any stray cancer cells floating around in my body after the surgery and radiation, this medicine would kill them off so they couldn’t get a hold and start growing somewhere.

This form of chemotherapy is considered a more “mild” version of chemotherapy. So you expect the side effects to be more mild. In the realm of hair loss and nausea - it definitely was. My hair continued to grow throughout this process. I had very little nausea with this med. However, it still had side effects. Below I describe the three side effects I found most debilitating with this medicine.

1) Stomach upset. This is a known side effect that nearly everyone on the med gets to some degree. It can range from mild to severe diarrhea and stomach cramping. Mine was mild, but still noticeable. By about the 5th round, the cramping was no longer mild. In fact, it was bad enough I debated whether to continue with the treatment. A conversation with my oncologist revealed that what I was thinking was just a regular side effect of the med was actually acid build up and inflammation of the stomach lining (oh joy!). Luckily, this was easy to deal with by adding in an acid reducer to my medicine regimen.

2) Fatigue. Like any chemotherapy, this medicine does a number on your blood counts and body. Translation - you are tired. And the fatigue gets worse as you progress through the rounds of medicine. After having gone through traditional IV chemotherapy and radiation though, I really don’t know what not being fatigued feels like anymore! I just know that there is going to be about 2 weeks out of every 4 (week 2 on the med and the week I’m off the medicine) that I’m going to come home from work and collapse for 1 to 3 hours of a nap before being able to do anything else.

3) Hand and Foot skin breakdown. Probably one of the most annoying side effects I’ve experienced is the breakdown of the skin on my hands and feet. Basically, this ends up being lots of cracking and peeling of the skin - mostly at the joints. It makes doing anything that involves moving my fingers fairly painful. Besides treating your hands with lots of lotions and creams, there really isn’t anything you can do about it. By the last round, it was just a known conclusion that by week 2, I would have band aids around most of my fingers on at least one if not two knuckles. Not pretty and not fun, but temporary.

An interesting side note related to this skin breakdown - this medicine also causes you to lose your fingerprints -pretty much completely. As a former forensic scientist - I find this intriguing! What a crazy thought. Luckily, I am not someone who aspires to go on a crime spree!

WHAT’S NEXT?

Next up will be an aromatase inhibitor for 5 - 10 years, and repeated monitoring. I’ll start that in September. These medicines block the formation of any estrogen or progesterone in the body. This is highly effective against cancers like mine because it responded (eseentially fed on) these hormones. In effect, this starves any cancer cells that try to grow. Of course, this also basically sends you into early menopause. I will try to be a little more on top of writing a post about how my body handles this med.

Treatment Update - Taxol

I have now had 4 treatments of the drug Taxol.  These treatments are weekly and I will have a total of 12.treatments.  So, I am 1/3 of the way through my Taxol treatments and 1/2 way through all of my chemo treatments overall.

Taxol is reported to have less of an effect on the digestive system, and less of an effect on the immune system.  This is a good thing because it also means I don't use the Neulasta with these treatments - and that caused by far the most significant side effects for me.

As the A/C drugs have had time to be processed out of my body, and the Taxol has a more cumulative effect - it means at the moment, I feel remarkably normal (minus the lack of hair!).  My energy isn't quite where it was before chemo, and heat and sun still have an enhanced effect, but I have the energy to spend time with the boys, the pets, and in the garden - all things I absolutely love.  And, not to mention time to spend writing - even if it is at odd hours of the night/early morning!

One of the most common side effects of Taxol is neuropathy - tingling and numbness - in the fingers and toes, as well as drying effects on the nails.  So far, I have been able to avoid these effects.  I am hopeful that will continue.  Some have told me that they felt these efffects right away, others didn't feel them until close to the end of treatments, and some never got these side effects.  I am hopeful that the Prayers, positive attitude, nutritional supplements and vitamins, and essential oils I use specific to neural protection will keep these side effects to a minimum.

My attitude has stayed positive, this journey continues on and I am making the best of it.  I am embracing using head scarves (mostly) and occasionally hats as accessories, and slowly even becoming more comfortable just simply being bald.  (My boys like that so they can rub my head!).

I am so incredibly thankful for all the prayers that people are sending my way.  I truly believe that these prayers have made an incredible difference in my strength, my energy, and my attitude.  Prayer is a very powerful thing.  I have said that from the very first signs that this may be cancer, I have felt a strong sense of peace thet God's got this, and it will all be OK.  This is one step in my journey, and while it may be a long road, this too will someday be behind me.  So, if you are one of the many prayer warriors for me out there - keep up the prayers, I am doing great, but I still have a long journey ahead.    But with a positive, humorous attitude, my Faith, the power of Prayer, and my Family and Friends, I will persevere on.

Breast Cancer Prayer

This prayer was given to me by a member of my church congregation.  It is beautiful, and inspiring.

MY PRAYER DURING BREAST CANCER

By Judy C. Kneece, RN, OCN

 

Lord, I have just received the diagnosis of breast cancer.

Still my anxious heart as I seek to understand why.

Teach me to transform this suffering into growth,

My great fear of tomorrow into faith in your presence,

My tears into understanding,

My discouragement into courage,

My anger into forgiveness,

My bitterness into acceptance,

My experience with cancer into my testimony,

My crisis into a platform on which I can learn to help others.

God grant that one day I can embrace this time as my friend,

and not as my enemy.

The Treatment Plan

So in the past week, I have met with a team of doctors at the University of Nebraska Med Center (Monday), heard their treatment plan.  Then, I met with an oncologist here in Des Moines on Tuesday morning.

The doctors in Nebraska and the ones here have pretty much the exact same ideas for treatment of this cancer.  It makes decisions easier when all the doctors agree.

My treatment plan will consist of having a port put in (today actually), then starting chemotherapy on Monday (Yes, in 3 days, less than a week after I met the oncologist)!  I will have chemo every other week for 2 months, then weekly for another 2 - 3 months.  Sounds like a blast, huh.

Once the chemo is done, I will have a mastectomy (I'm leaning toward bilateral, but there is time to think about that more in the coming months).  Depending on how the cancer responds to chemo, and what my scans look like then, we will decide if I need to have radiation before undergoing reconstruction.

Long story short, it's going to be a bit of a long year!  I'm trying to stay positive throughout this and trust that God will give me the strength to get through this.  Of course, being positive does not take away the fear.  The unknown is scary.  Not knowing how I will react to the chemo is scary.  Not knowing how I (and my kids) will react to not having hair, is scary.  The thought of major surgery, followed by another major surgery for reconstruction and all the infection risks that come with it, is scary.  The possibility that even with all these great efforts, this cancer could possibly come back, and possibly in a more vital organ (liver, lung, bone, brain) is VERY SCARY.  Through all this, I rely on my faith and belief that God has a plan and my hope that he is certainly not done with me yet.

Stay tuned for more information and stories from my journey.  I am going to be posting an amazing prayer that was given to me by a congregation member of my church.  I have some other little tidbits planned as well, and that's just from these first few weeks of this crazy long journey!