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Drugs Archives - Denise Neish

A Not-So-Gentle Reminder

Posted by | Articles, Chemo, Drugs, Running, Thoughts, Updates | 3 Comments

It was 1:00 AM. I woke up, shivering, in a cold sweat. Something wasn’t right. I got up to go to the bathroom, and then the shaking really started. My head hurt, and I was cold, yet hot.

“Oh no!” I thought. “I have what the kids had!”

Every mom picks up bugs from their kids sometimes, and every mom knows she’s not allowed to be sick, . . . ever. If mom gets sick, then who takes care of everyone else?

Hopefully every mom has an amazing husband, and obedient children, who pick up the slack when she’s not well. But most moms want to do as much as possible, even when they are sick, precisely because they want it done ‘right’.

My dread at being ‘under the weather’ was more than just not wanting to let my family down, though. I was on new chemotherapy drugs, which suppress my immune system, and knew that it could be bad if I got sick. I rationalized that my kids’ ailment only lasted for two days, and so, with any luck, I wouldn’t be down for long.

On day two, after a constant cycle of chills, fever, vomiting, and blacking out, when my temperature reached 104.5, we decided to call my oncologist, even though we knew what she would say. Sure enough, she wanted me to go the emergency room. Even then, Branden and I debated if that was really necessary.

Lab tests showed that I had an infection in my body. I got some IV antibiotics, and was sent home with oral antibiotics. We had done the right thing, now I just had to wait to get better.

Two days later I was still chilling and spiking high fevers. Branden called the doctor again, and she summoned me to Huntsman Cancer Hospital to be admitted. By then, the cultures from my emergency room visit revealed that the infection was in my kidneys and blood. I was septic. This was definitely not what my kids had. I was now in a fairly serious medical condition.

I spent four days in the hospital battling fevers, migraines, stomachaches, and more. After feeling well for so long, this was miserable. My mother-in-law and Branden made sure things ran smoothly at home, while I lay in the hospital, sick, sick of being sick, and lonely.

A few years ago, when I was in chemo, I became quite ill, and was hospitalized for nearly a month. Those memories came flooding back, from the uncomfortable bed, to the view from my window, and the smell of the hospital. Mostly though, I felt sad. I knew I would be home soon, but I missed my family terribly. I reflected on the uncertainty we have in life, and knew I wasn’t in complete control of my health, no matter how much I ran, or ate the right foods.
I began to improve, and knew I would go home shortly, so I reflected on what I should learn from my sick week. At the hospital, I didn’t have the clothes, bed, food, or slippers I wanted, but that wasn’t what mattered. What stung was that I was robbed of time with my family.

There is no thing, accomplishment, or experience that can take the place of the ones I love. This summer I will value the happy time I have with my children home from school. I will play with them, snuggle, be more patient, and appreciate them more. I will never forget that family is my greatest treasure, and there really is no place like home!

Hooray for New Drugs!

Posted by | Chemo, Drugs, PET scans, Thoughts, Updates | 5 Comments

I continue to feel well since my recurrence of cancer in my right iliac last summer. At that time, and after much research, and flying to Houston for a second opinion, we decided that I needed to get on Palbociclib, a new drug that was still in it’s final trial phase. I was a perfect fit for this targeted therapy, which is just a daily oral drug with minimal side effects, and so I began the process of trying to get on the trial.

I decided to take another drug while I went through the process of getting on Palbociclib, because I wasn’t sure how long it would take, and I didn’t want to go untreated for too long. I’m glad I did, because several months later, I still wasn’t on Palbo, and I was becoming more concerned that I would not be able to get on it.

Recently, I was so happy to hear that Pfizer had received FDA approval for the drug I needed. I assumed that meant I would be able to get it because my doctors recommended it for me. I was disappointed to learn that they had changed one little criteria for receiving Palbociclib. It was only for women who had not been on prior endocrine therapy, which ruled me out. I looked for alternative routes to getting access to this drug, and kept running into brick walls.

I went into Huntsman Cancer Hospital a couple of weeks ago for a PET/CT scan and was relieved to find that I still just have that one little spot of cancer, and it does not appear to have grown. Everything is stable, so that is great! I was so happy that my interim drug has been working. It helped me to not feel so anxious about getting onto Palbociclib right away, but I still wanted to eventually get on it.

Well, last week it was confirmed to me that holding out for Palbociclib was the right thing to do, because, surprisingly, my insurance decided to pre-approve me for this drug. I couldn’t believe it! It would normally cost about 11,000$/month, but now it will cost me 5$/month. I think we can swing that! :) I am grateful that despite the long wait, I am finally on the treatment that I felt right about from the beginning. And the waiting has not caused the cancer to grow.

Today I got a blood test, and then picked up my new fancy drugs. I will take two drugs in combination. The Palbociclib alone costs about 500$ per pill, without insurance! I take it for three weeks, then I will take a week off, so that my white blood cell count won’t get too low. The other drug, Femara, I will take daily. Palbociclib is a chemo drug, but the side effects are usually minimal, and it should be something that I can take for a long time, as long as it is working for me. I am hoping that I will continue to feel as well as I currently feel, which is totally great!

Thank you for those of you who continue to ask how I am, think of me, and pray for me and our family. We really are all doing quite well right now and just enjoying life. I feel really grateful for all that I have, for the happiness of my family, and for my health and strength, and the great treatment that is available to me.

 

 

My new perspective on setting goals

Posted by | Articles, Drugs, Running, Thoughts, Updates | 11 Comments

Just as I was about to enter the elevator yesterday at Huntsman Cancer Institute, I saw a familiar face walking toward me. I couldn’t place the face until I looked at the nametag affixed to his shirt. I said his name out loud, and he recognized me at the same time. It was an old teammate from my University of Utah Track days! I think the last time I have seen him was shortly after Branden and I were married.

He is a healthcare professional at Huntsman, which makes it a little odd that I haven’t run into him in the last 3 ½ years, but it’s a big place. It was so great to see an old friend after the somber task of chatting with my oncologist about my health. And this particular guy is a funny man, who always kept the team entertained, so that made it even better.

He went down the elevator and walked out to my car with me while we caught up, very briefly, on how many kids we each have, etc.. Suddenly I recalled a memorable incident when I learned something about goals from him, back in the college track days.

Here’s what happened (and if you are reading this, and were on the team back then, you will remember this, and know exactly who I’m talking about!):

It was Cross-country season, and our team was scheduled to meet with the sport’s psychologist about setting goals. (We were sometimes forced into going to things like this against our will. Attendance was NOT optional!)

The rest of us nodded along compliantly to get through the experience as quickly as possible, while the sport psychologist handed us pencils and paper to write down some of our personal goals for the season. She told us that our goals needed to be obtainable, and something we could control.

After a few minutes she asked if anyone would share one of their goals. “Funny guy”, who was also a good runner and the team captain, raised his hand. “My goal is to win Conference this year.”

The psychologist reminded him that he couldn’t control how fast the other guys in the conference would run. She added, “If you don’t reach this goal, which you can’t really control, you will feel like you failed. You need a goal you can reach.”

“Funny guy” was all serious now. He was no longer nodding and complying. He said, “No. My goal is to win conference. That has been my goal all year, and it’s possible. That’s my goal,” he stated stubbornly.

She countered authoritatively, “That can’t be your goal! You can’t control it, and you will need to set a different goal for this exercise, because you aren’t following the guidelines I taught you about goals!” She was clearly exasperated about his defiance of her goal rules, and she wasn’t backing down.

For the next several minutes, two very determined individuals argued back and forth about what his goals should be. As the conversation heated up, the rest of us smiled nervously at each other, slightly entertained, and slightly bugged that they were both taking this so seriously.

The sports psychologist would not budge. It was her job to teach us about making achievable goals so that we could all feel good about ourselves. She had undoubtedly dealt with student-athletes who felt discouraged when they didn’t reach their lofty goals.

But “funny guy” wasn’t giving in either, and though he wasn’t being mean, he was not in a funny mood.

It ended when he stood up and said, “Look, my goal is to win conference. Period. And yes, I will be disappointed if I don’t reach my goal, but that’s okay. That’s my goal.”

With that, the sport’s psychologist threw her hands in the air and gave up. She was genuinely mad, but “funny guy” was dead serious. Some of us were giggling by now, but we quickly wrote down some “obtainable” goals.

When I reminded him of this incident, he laughed and said that he felt badly now that he had given her such a hard time. “Funny guy” is also a nice guy. But I thought about it my whole drive home.

Goals are our own. Nobody else can make them for us. They have to be personal, or they can’t be effective. There are some good basic guidelines out there for setting goals, but my theory is that if you always stick with “obtainable” goals, you may just be disappointed later that you didn’t really go for it! And guess what? If you set lower goals, you almost certainly won’t reach your potential.

Just minutes before I ran into my friend, I told my oncologist that I had a goal. We were discussing my drug options, and she told me that she felt it was her responsibility to help me continue to feel well.

I told her that I have decided I want to live to be 60. I said, “I know it’s not something that we can necessarily control, but I just want you to know, as we discuss my treatment, that I am looking at this with the long-term in mind. That’s 19 more years.” I motioned to Macy coloring in the chair next to me, “She’s not even five yet, so that’s where my mind is. ‘Feeling well’ is important to me, but it’s secondary to fighting the cancer.” She nodded with understanding, and I was glad she didn’t tell me that my goal was ‘unobtainable’ for someone with stage 4 breast cancer. And if I achieve that goal someday, then I will set a new goal, which may, or may not, be ‘obtainable’.

Goals make us happy. I don’t think it matters as much what the goal is, as how it motivates us on a daily basis. My goal of living to see 60 gives me hope. It makes each day seem less daunting when I plan on seeing my youngest graduate from college, and hopefully meeting a few grandchildren someday, rather than constantly worrying that I need to prepare my kids for the worst. It also makes reaching 60 seem possible, which motivates me to eat healthy, exercise, and choose my treatment plans with wisdom.

Like you, I’m happiest when I’m progressing. I will always have some personal goals, which are less measurable, like improved patience, or noticing the needs of others around me. I have some specific goals, such as organizing my home, practicing the piano, or preparing for a race. As a mom, I have goals about what I want to teach my children. But because of my beliefs, all of my goals hinge on my eternal goal of returning to my heavenly home with my family one day. Knowing my goals helps me determine how to spend my time each day, and helps me to be happy with the direction I am going.

As you make goals for the new year, I challenge you to be thoughtful and determine what you really want out of life. Then make your goals your own, and you will be driven to succeed. You may occasionally be disappointed if you don’t reach the high expectations you have for yourself, but you will find joy in the challenge, and in the new heights to which your goals bring you. Obtainable, shmobtainable!

Decisions and Goals

Posted by | Drugs, Thoughts, Updates | 5 Comments

The last few weeks I have been trying to figure out what I should be doing. I thought I had it all figured out after we went to Houston, because I felt really good about my plan to get on a CDK Inhibitor trial as quickly as possible. The frustrating part came when I tried to follow through with my plan and found that all options either took longer than I thought they would, or involved more travel on a regular basis than I would like.

I thought of going anywhere in the country to get on this trial as soon as possible, but there is a lot of monitoring when you are on a trial drug, and I would have to travel frequently for that. It didn’t seem worth the commitment for a lot of future travel when I would be able to get on the same drugs closer to home just a couple of months later.

My oncologist at Huntsman, Dr. Buys, did not seem overly concerned with the idea of me waiting another couple of months to begin treatment, but I did not feel comfortable with that idea at all. I had already waited two months, and did not want the cancer to spread any further.

I have to be off all treatment completely for 3 weeks before starting on the trial drug, and so I didn’t know if I should get on another drug if there was a possibility I could begin a trial soon. Also, taking certain drugs would make me ineligible to be on the trial drug. (There are very strict criteria that must be met to be allowed to participate in this trial).

Finally, after seeing all the wheels moving slower than I wanted them to, I decided that I needed to get on something while I waited for this trial. I still feel like it is the right thing to get on the CDK Inhibitor, and it will be available to me at Huntsman (so no travel) within the next 3 or 4 months, but until then, I am taking Tamoxifen. It does not make me ineligible for the trial drug, and it can be an effective drug, although it would definitely not be my top choice right now. But I do feel good about being on something that can fight the cancer while I am waiting. And I am glad I decided to not take any drugs that would make me ineligible for the trial, or that would require me to travel all the time.

The side effects of Tamoxifen are minimal. Basically my body temperature is hotter than normal, and sometimes I feel slightly dizzy, but not too frequently. Really, I feel great, to be honest! I’m still running, and have plenty of energy.

I have also spent the last couple of months reworking my psyche. I spent two years with some hope that I was done with cancer (although I always knew it was very likely to return sometime), but I liked having that possibility that it was gone forever. Now that it has returned, we know it was never completely gone. But honestly, not a lot has changed for me. I’m not starting some crazy treatment that effects my quality of life, and life is going on as normal.

My goal is to continue to feel great and take good care of myself, while focusing on the things that really matter the most in my life. Cancer is not going to steal all my attention and focus. I will go to doctors appointments when necessary, and take the drugs I need to take, but in between those doctors appointments, I am not going to be a patient all the time. I am a mom, among other things, and there are people who need me to be me.

I am a happy person. I am so grateful for the many many blessings I have in my life. I love my husband and my children so much, and they bring me so much joy each day. I have deep friendships and wonderful extended family. No ability has been taken away from me. I feel healthy, strong, and capable of doing many good things in my future.

I will let you know when I am able to start on the trial drugs, or when I have any updates or scans.

Thank you all for loving me and caring about how I am doing. I love each of you, and thank you for the comments and messages of encouragement I have received.