Offering hope to those on the path behind me

Tag: #lifer (Page 3 of 6)

What’s Next…The never ending question when you are Stage 4

Now that the pain was under control and I was back to using a walker, it was time to figure out

What’s Next?

The first step was to determine what kind of treatment I would be using to keep this from spreading any further. My doctor told me (and seeing how it is now almost 5 years later and I’m here writing about this I believe him) “the good news is that it is only in your bones.” Meaning, as long as it stays only in the bones I have a much better prognosis.

The first line of defense offered was Arimidex. That sounds easy. Take a pill once a day. There was only one problem, Arimidex is only available to use if you are postmenopausal. At the time I was 44. My mother had a hysterectomy at 40 and my grandmother was deceased. We had no idea when I would be in menopause based on family history. A simple blood test showed that I was not even pre-menopausal. feet first

The doctor, my husband and I discussed the options. There were two: have a hysterectomy or be subjected to a monthly shot that would mimic menopause in my body. When I asked how we would know when I actually went into menopause, and therefore we could stop the shots, the answer “we won’t know” was not what I wanted to hear. Armed with this information, I turned to my OB/GYN. He delivered my youngest child, he found the original tumor during an exam, he was someone I knew could help me make this decision.

Decision: Do I jump in feet first or dip my toes and test the waters?

If you don’t believe that there are doctors that care, I’m here to tell you there are. A long-term relationship with an incredibly caring doctor is an amazing thing. When I called my gynecologist and explained the situation he immediately said he would call my oncologist directly and discuss the options. He called me back in less than 30 minutes having talked to the oncologist and giving me his best recommendation.

Since I was 44, did not want any more children, and breast cancer likes to spread to the ovaries, we came to the conclusion that the best line of defense was to have a complete hysterectomy.

Another surgery on the horizon.

The pain was off the scale

 

“What is your pain on a scale of 1-10?” the nurse asked.

I answered……. “15”

That was the moment my husband began to fully comprehend what was happening. He knew I was in pain, and had been in pain for several months. But pain was not something I have ever been able to assign a number to.

The nurse found a new gear when I said my pain level was 15. She finished what she was doing as quickly as possible, consulted with the doctor, and ran off to set up an IV drip of morphine for me. I was wheeled down to the infusion room to get the morphine drip, tears still randomly streaming down my cheeks. They wanted to get my pain under control so I could go downstairs to the radiation oncologist and get fitted for my radiation pillow.

In order to get the proper position for the radiation, a pillow is molded to hold me in the same position for every treatment. They use a CT scan to know where the radiation will be targeted and how to best ‘arrange me’ to make the molded pillow. I admit, I almost laughed when they asked me to “hop up on the table.” Obviously, there was no hopping that was going to be done. I remember staring at the table wondering how I would get out of the wheelchair and onto the flat, cold, hard table they wanted me to lie on.  The morphine had not been enough. I think my husband actually heard my screams in the waiting room.

After a few attempts, they eventually got me situated enough to get the scans and make the pillow. Then they told me I could get back in the wheelchair. Another laugh, another scream, another 10 minutes trying to figure out how to make that transition.

We met with the radiation oncologist after the scan/pillow episode. This was the first time we actually saw the scans. I don’t have any medical background, but my husband has a degree in kinesiology. As the doctor was talking, I was watching my husband’s reaction more than looking at the scans.

My husband’s face told me more than the words the doctor was speaking.

Without going into an anatomy lesson, the best description is the bone that holds the femur in place was no longer there. It was gone, eaten, destroyed. It was no wonder my pain level was off the scale, my femur was just floating, there was no joint left.

According to the doctor, the radiation was going to help with the pain (THANK GOD, because the morphine was doing NOTHING). Onward, to radiation!!!

 

 

Have I mentioned how much I hate October?

It was October 2010. Almost 7 years since I was first diagnosed with Breast Cancer. I had resumed a normal life. Cancer was behind me.

No. It wasn’t.

Cancer was here for the long haul. It was here to stay.

The next few days were a blur.  The timeline is a little hazy, but generally I remember thinking I don’t like October.

Which came first, the phone call, the doctor’s visit or the biopsy? I don’t know. During those first few days I did have a bone biopsy performed and I had visits with my oncologist and the radiation oncologist.

I do remember getting a phone call from the oncologist. The date I remember.

Friday, October 8, 2010.

It was exactly 7 years from the date of my first biopsy.

I was at work (still using the crutches, which is important in trying to remember the timing). I stepped outside to take the call. They told me I had cancer AGAIN. Through my tears, I called my husband and asked him to come get me. He came and picked me up and we just drove around for a while. Was it that same day or another, I can’t remember, when we went to pick up our girls from school to tell them the cancer was back.

The most important thing  I learned during this time is it is not fun to find out you have an allergy to a pain medication right after you had a bone biopsy on your hip. Not being able to walk and needing to get to the bathroom quickly did not go so well. Thankfully, it was a pain patch and I was able to rip it off to limit the side effects.

We were headed to the oncologist, for another appointment, and the crutches slipped out from under me going out the door. Screaming and crying I wasn’t sure how I was going to make it to the car 10 yards away from me. In fact, my husband almost called and cancelled the appointment. Somehow, he managed to get me to the car and we got to the doctor’s office. Once in the waiting room, one of the nurses got me a wheelchair.

In the time period of about one week, I went from walking, to using crutches, to sitting in a wheelchair. What in the world was happening? We were about to find out just what cancer had done to my body.

Did I mention that I REALLY don’t like October?

 

 

 

It never dawned on me it might be cancer again

Life returned to normal after a while. My hair grew back. Kids had school. I had work. I saw my oncologist a couple of times a year and eventually, I even ‘graduated’ to once a year.

After a few years, it was like that time in our life was just a little blip on the radar. It was something that was in our rear All clear for over 5 yearsview mirror. No need to look back. Time to move forward and enjoy life again.

Each year came and went….2004…2005…2006…2007…2008…2009… Until…

 

May 2010 – I began working out with my youngest daughter. She had a friend who wanted her to run cross-country with her the next school year. I decided I would go with her to the school and get in shape. I even had the app Couch to 5K to help both of us with the training.

I noticed my lower back was hurting. Since we had just started working out, I thought my body was just mad at me for trying to run/walk several days a week. I pushed through and continued to go to the school with her for a few more weeks.

As the summer went on, it would seem to get better and then I would do something else that would cause pain. There was always some kind of explanation for the pain. Once I stepped off a stool after changing a light bulb and it hurt again. Always it would seem to get better after some rest.

In August, my oldest daughter and I drove to St. Louis to visit family. When we got there I could barely get out of the car. My sister in-law made an appointment with her chiropractor. I went several times the week we were there and again, it seemed to be helping.

When I got home I found a local chiropractor and began seeing him regularly.

October 2010 – I could no longer explain away the pain. I made an appointment to see my regular doctor and a friend offered to drive me. At that point it still had not dawned on me that cancer might be the cause for my pain.

After a brief visit, the doctor sent me for x-rays. When I came back she told me there were 3 possibilities: 1) I had a hairline fracture in my hip that was causing the pain, 2) I might have cancer and 3) I honestly do not know what she said as my mind was racing about hearing cancer again. Surely this was not happening again.

She told me I needed to use crutches and keep as much weight off my leg as possible. As we got to the car, my friend made a comment about how calm I was when the doctor said ‘cancer’. Little did she know I was falling apart on the inside.

Confetti, a Bell and a Certificate – Treatment is Finished

At the door to the infusion room there is a bell. I didn’t really notice it at first. Then, while I was sitting there with drugs dripping into my veins, someone rang the bell and the nurses threw confetti signifying they had finished their treatment.

I got to ring the bell. Eight total treatments from November to April. It was a small celebration, with confetti and  a certificate indicating my treatment was complete. OK. But what’s next?

After a few weeks I had my follow-up appointment with the doctor. For me, treatment was really complete yet. I still had a cycle of radiation to go. I met with the radiation oncologist, who just happened to be downstairs, and got my orders.

Before beginning radiation, I had to have my “pillow” made. So many new and unique experiences that unless you have had cancer you do not understand. The pillow has some sort of beads in it and you lie on it in just the right position. Somehow the pillow becomes a mold that allows you to stay in the same position for all of your treatments. Every day, they pull out your pillow and away you go watching the machine rotate around you and zapping radiation into targeted areas to kill any more cancer cells that might be left.

Radiation is a long process, but it does not take very long. That must sound strange. The actual radiation treatment only took about 10 minutes once I was on the table. But, it was 10 minutes every day for 20 days (no weekends).

I would schedule the radiation treatment either first thing in the morning or later in the afternoon depending on my schedule. Since the office was about half way between work and home it was very convenient (convenient – not really a word I thought I would ever use when talking about cancer).

The radiation does not have many immediate side effects. While I was getting my radiation treatment it was just another appointment on the calendar. However, as the radiation began to accumulate, I became more tired and it was harder to have energy for much more than getting up, going to work and driving home.

The most memorable experience of the radiation treatment was AFTER  it was completed. A few days after I received my last treatment I woke up and realized I felt like I had the worst sunburn I have ever had in my life (if you recall, my cancer is breast cancer, so putting on a bra was impossible, sorry guys if that is too much information).

Once again, God showed how he is in the small stuff. My radiation treatment ended just before out offices closed for a week for the July 4th holiday. I had a full week to sleep, recover and heal my burn before I had to return to work.

 

Confetti congrats

Another bell, another confetti celebration and another certificate of completion….But What Is Next?

 

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