Radiation is complete...I rang the bell

November 6, 2013

Day 32. The last day of radiation. I rang the bell.  Today.  For someone who missed ringing the bell at the end of chemo ( remember that the cancer recurred during chemo, thus indicating that the chemo was ineffective) it was an amazing experience to actually ring the bell.  Plus, we have evidence from the MRI that the radiation is working. The cancerous nodule is shrinking in size.  Today has been a day of celebration. I am grateful. Thankful. Hopeful. Tired.

It's been a longer journey than I anticipated. Before we started, thirty days (that's how many days I was originally to have radiation) seemed easy...piece of cake. The reality was different. Tedious. Relentless. For many of the days I drove myself. When you are sick, there are many things you have no control over. Driving myself gave me some control. I could leave when I wanted, I could listen to whatever I wanted on the radio; or not. Control.

Every day I had to drink 24 ounces of liquid the hour before I had radiation. A full bladder is helpful in keeping the bladder safe from the effects of radiation.  The last seven days, which were known as "the boost" I drank 20 ounces of liquid. And, I had the added pleasure of an ultra sound on my bladder before radiation to ensure my bladder was filled to the right amount. There was a small window of tolerance. Some days I had to drink more.  Other days it was too full, which meant I had to eliminate a specified amount. This is as hard to do as it sounds.

The boost focused the radiation on the cancerous nodule. During the twenty five days of radiation prior to the boost days, a larger area was radiated.  When you radiate the abdomen area the effects of radiation are nausea and irritated bowels. I experienced both. I learned that anti-nausea medication was my friend. I never left the house without Imodium. It was hard to eat because it seemed no matter what I ate disagreed with my stomach. Plus, by the end, the tiredness set in.

As I read through what I've written it sounds depressing. So I want you to know I am in good spirits and I was for almost all of the days. I worked every day. The normalcy of work was a gift from God. I ate what I could and for the first time in my life worried about losing weight instead of gaining weight. Chuck Reedstrom was my strength and near the end took me to radiation when he was in town. He was present today when I rang the bell. My good friend, Darrell Luthi took me several days when Chuck was out of town.  Our boys, Richard and Kirk, picked up dinner when Chuck was out of town and were so patient as I tried to figure out what I could eat.

Mostly it was a little over six weeks of having an irritable stomach, frankly a little like those early weeks of pregnancy!  I would do it again in a heartbeat to beat cancer. And that is just what the Dr. believes we are doing. Beating the cancer.

I'll have an MRI in four weeks and we'll be able to see how much more the nodule has shrunk. The Dr. is managing my expectations, she told me not to expect that it will be completely gone. She reminded me that the radiation will continue to work for three months after the last treatment.

So, celebrate with me today. Ring a bell. Keep praying that the radiation will completely kill all the cancer. We're praying the word "cure" in the Reedstrom home.

Thanks for loving me and encouraging me in this journey!

Suzy

Oh no! Allergic Reaction

May 31, 2013

The day started typically, nothing to make me think this would be anything other than a shortened version of Taxol and the regular infusion of Carboplatin. All was good. Pre meds all good. Those would be anti nausea (two different kinds for me), Benadryl and steroids (to help prevent an allergic reaction), and Pepsid to coat the stomach. This takes about an hour. Next the Taxol, apparently this is the protocol, as doing the carbo before the taxol makes it harder for your blood counts to rally, who knew? They started the carbo about 12:30.


I began feeling bad, walked to the restroom and realized in addition to feeling bad, the palms of my hands were red and itchy, then the back of my throat began to itch. I stood up and was light headed. The nurses station is right next to the rest rooms...great design! I walked out, saw my nurse (great male nurse named Spencer) and said, "Spencer, I'm really feeling badly." He jumped up, grabbed me and had me sit down. From this point on my account is pretty hazy. Suffice it to say they got me back to my little room and began working on me. By this time I'm hot, sweating, and feel like I'm having a very bad case of heart burn. They called the CERT which I think stands for the cardiac emergency response team. At one point there were about 10 folks working on me, several doctors, lots of nurses. They've paged my dr. My blood pressure is being taken close to every minute and bottoms out at 68 over 35. The great news is at this point, I began coming out of the reaction.

Once I started feeling better I told Spencer, "well I guess I let you all have a real life experience for what you train for!" The good news is, my heart is fine and I'm feeling back to normal. The not so good news is I only got 10 minutes of what should have been an hour drip of the carbo. Dr Tung and I will discuss what happens next and what are the alternatives
Several God moments occurred. Nurse Spencer shared with me before we started what the symptoms were when you have a reaction to the chemo. I was in the out patient hospital and not a doctors office when the reaction occurred, and because of very dedicated drs and nurses who responded quickly I am home and feeling fine.
The journey continues...

Some thoughts on hair

Today I am sitting in a chair at the Ricky Knowles Hair and Wellness. My long blond wig sits on the floor is a red and black bag. It was only four months ago that I ceremoniously took it off the desk in my bedroom and placed in box on the top shelf of my closet. “Done,” I thought. This long blond wig would only be used for Halloween. But of course, plans do not always unfold in the way that we think. Scarcely a month after I had deemed myself “safe” from a recurrence; I began to spot. Just a little, not much, “Maybe,” I thought,” it’s just dryness.” It continued and then one day it was more. Anxious, I made an appointment with my doctor.

The recurrence was a mere eleven months after I had joyfully rung the bell, celebrating the end of chemo and the beginning of life in remission. Eleven months was not long enough; but it was what I was given.

So here I am again, recovered from a second successful surgery, one round of chemo down. Again, we are hopeful, again we hope the chemo will knock any remaining remnants of this dreadful disease from my body.

Today my thoughts are more, “here we go again, no more hair.” It’s not fallen out yet…but soon. For those of you who do not know, hair begins to fall out somewhere between 14 and 19 days after the first chemo. I’m at day 14. I still have hair. But, for the last two mornings I have awakened to sore hair. That’s the best way I can describe it. Technically, I think it is my hair follicles that are tender. It’s like when you’ve had your hair pulled back in a pony tail all day and you take it the rubber band out. You’re hair feels sore; this is the same feeling. So I know, my hair is on its way out.

Honestly, I’m sad to lose my hair. It’s the tangible and visible confirmation that the cancer has not left me. I did not win the last battle as I thought I had. But, I’m ready to fight again. I’m ready to win this time, win the war not the battle. This reality is not easy to face, but face it I must.

So, I sit in the chair, sharing my story with Ricky. Asking him to cut this long blond wig in a style that looks more like what I looked like before my life was rocked with a diagnosis of cancer. He’s kind, he listens as he cuts the wig that is now on my head. He asks how I wore my hair, am I a hair tucker; that is do I tuck my hair behind my ears. Since I’ve not had hair long enough to do that in more than a year, I have to think. “Yes,” I say, “I do tuck my hair behind my ears.”

Foreign, that is the word I would use to describe the feeling of a wig on your head. I was never really comfortable with one on. I never tucked the synthetic hair of the wig behind my ears during the last bald period of my life. It did not feel normal. Ricky is cutting the hair so that I can do this. Maybe, just maybe, this time I will feel more like me with this wig on my hair. Today, this is my hope.

...and the chemo begins!

May 10, 2013

First day of chemo regimen two.  Our appointment was for 9 AM, we arrive at the Methodist Infusion Center about 20 minutes early.  At 9 we're taken back and there is no      private rooms available - it's a busy day here. We ask if when one of the private rooms becomes available -  we could have it.  "Yes, of course," they say.  The problem is, they make no note of that so there is no way to be assured that this will happen. We get settled, blood pressure, pulse and temperature are taken.  All is good, as is my blood work.  Finally, my nurse comes in, she says it will take about an hour for the chemo to be prepared.  So we wait and wait and wait.

At a little before eleven, I walk down the hall, find an empty private room and in my take control mode of operation, I basically take it.  A nurse is walking down the hall with a patient that will have infusion and is about to put her in the room when I intervene.  I ask if she will be here for most of the day, I tell her I will be.  She says no and that yes I can have the room.  Not sure what this says about me but I am thankful I have a private room and that Chuck can now work at the little table and chair that sits outside of the room. It is now 11:15am and no sign of my nurse or any chemo, not even the get ready meds like Benadryl, steroids, ain't nausea, etc. are here.  At the rate we're going I could be here until tomorrow.

The chaplain came in earlier, a nice baptist chaplain.  I, of course shared with him that I was Methodist clergy and then shared with him my directed prayer request, that the chemo will put me into long-term remission.  He prays, "Father..."  I love the Baptists!

Each private suite in the infusion center has a name.  The room I have commandeered for myself is called, "courage". Today I am thinking that patience would have been the better room for me to be in as I am running short of that at the moment.  My nurse is stressed and in the two hours that I have been here, I have only seen her twice.  Apparently there's some mix up on the doctors orders.  She just walked by my room, not looking this way, I think she may be afraid I'm going to tackle her to find out what's going on.  If it were me, I'd have been in to see me every thirty minutes or so to let me know what was going on...even if there had not been any progress.  Here is just another example of how I wish I was in control and the reality that I am not...bummer!

So here are the bright spots for today. It is pouring outside, we've been under severe weather alerts all morning.  We are up on the 21st floor and have an amazing view of Houston, our car is safely located on the sixth floor of the parking garage so it is safe from flooding and hail and we are in the Medical Center in the Methodist Out Patient Hospital that has a generator should the electricity go out.  Wearing yoga pants so I am very comfortable and have on my real comfy socks (really turquoise) so my feet are comfy, brought my own cuddly blanket that Chucks mother made for Richard and Kirk years ago (thank you Lemoine) and my favorite pillow. Oh, and the thing I love the most...warm blankets whenever you need them!

Ok time alert, it is now 11:30 and still no movement or sign of my nurse to let me know what is going on...color me frustrated!

Update:  it's noon all the meds given before the actual chemo begins have finally arrived, getting anti-nausea now, they've pushed the Pepcid and Benadryl so staying awake is a bit of a problem. Plus I've learned another bright spot: no nasty burning sensation when you push the Benadryl through the port.  Color me at the moment...thankful.

So here we go again....prayers for the chemo to put me into long term remission would be greatly appreciate. From my lips and your lips to God's ear!