Denise Neish - Choosing a Joyful Life with Cancer

Category Archives: Chemo

29 posts filed under Chemo

A Not-So-Gentle Reminder

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!

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.

Trip to Houston for Some Answers

After much planning, and arrangements that included my mother-in-law and several other great friends, Branden and I spent the week in Houston, at MD Anderson, trying to figure out the best plan for me in fighting my cancer recurrence.  We met with a doctor who was recommended to us by multiple people, and I feel like he lived up to his reputation.

When I first found that the cancer had returned I went to my old oncologist, Dr. Buys, at Huntsman Cancer Institute in Salt Lake. She really is wonderful, and has been an incredible partner in battling my cancer thus far. I don’t think I would have had two fabulous years in remission without her wise advice and genuine concern for me. But when we spoke with Dr. Buys, she didn’t suggest what we were expecting.

Let me briefly explain metastatic breast cancer. It started in my breast originally, but because it travelled to my bones, that means it has gotten into my bone marrow and found a good landing place in my bones where it grew. At first the cancer was in my spine and pelvis. After all the treatment I received three years ago, we no longer saw evidence of cancer in my body, but doctors mostly agreed that it would pop up somewhere again. We were hopeful that they were wrong, but knew it was unlikely.

Now, eradicating my one visible tumor with radiation should not be a problem. The problem is that now we know the cancer is still circulating in my bone marrow, blood stream, etc., and will land and make more tumors if we don’t treat it systemically (which means my whole body, not just the one spot). That was why we assumed that Dr. Buys would recommend chemotherapy again, but this time she did not think that was the best idea.

According to her, the chances are “miniscule” that I will completely eradicate the cancer, and my best bet right now is to try an approach with less side-effects than chemo so that I can continue to feel well. My type of cancer is stimulated by estrogen, and so trying a new estrogen blocker is one method of holding back the cancer for a while. Many women with metastatic breast cancer switch from one estrogen blocker to the next over time. One drug will work for some time, and when that stops working, sometimes another one will work. This method can go on for many years if you are fortunate, treating the cancer as sort of “chronic” rather than “terminal”.

I have read a lot over the past three years, and I know that this is the recommended treatment plan for someone in my position, but it has been hard to wrap my head around that. I asked Dr. Buys for her suggestion on a more aggressive treatment plan, such as chemo, and she said she would really try to talk me out of it. “Why would you want to do that to yourself?” were her exact words. I respect her opinion very much, but left her office feeling a bit disappointed. We decided to go to MD Anderson in Houston to get a second opinion.

It was a few weeks before I was able to get the appointment with Dr. Valero, but I felt the wait was worth it. I had some time to think about what Dr. Buys said in the weeks leading up to my appointment with Dr. Valero, and felt that if he suggested the same type of treatment as Dr. Buys suggested, I should listen. When he read my medical history and came to speak with me he started off by basically giving me a much needed pep talk.

Dr. Valero stated confidently, “You can live with breast cancer.” He let that sink in for a minute and then said, “You have lived with breast cancer for a long time now.” Just as I was thinking that three years wasn’t really that long, he said, “You had it many years before you were diagnosed, or it wouldn’t have been at the stage it was when it was discovered.” Then he asked me if I had any pain. When I said no, he said, “See?! You wouldn’t even know you had cancer now if we did not see it on your scan. You can run, you can take care of your children, and you can have an active lifestyle with cancer. So, . . . what we need to do, is keep you feeling well for a long time, and give you a drug that will stop or slow the growth of the cancer.”

He then told me that we are at a good place. My cancer is not causing me any problems, and we have several “tools in the toolbox” right now because I have not had many different drugs yet. After discussing some of the hormone blockers on the market right now, he recommended that I try to get into a trial of a new type of drug called a CDK inhibitor. It does not just block estrogen, but actually destroys estrogen receptors. It has had some amazingly effective results in early phases of experimentation. It is usually used in combination with an estrogen blocker, and so it can be a strong line of defense. Some early results are showing a much longer duration of time before it stops being effective than just the estrogen blockers alone. He said, more than once, that if he were in my situation, he would try to get that drug. The CDK inhibitor was something that Dr. Buys had suggested, but when she couldn’t find an open trial right away, she just moved along to the idea of an estrogen blocker alone. But basically they both were suggesting the same thing.

I trusted Dr. Valero’s advice, but could not leave without asking, “So, do we not ever try for a cure then at this point?”

Dr. Valero quickly raised his finger and said, “I did not say that!” Then he said, “If we have good success for a long time with this approach, and we see that tumor shrink, and no new tumors appear, then maybe we will zap it with radiation and hope to get rid of it completely at that point.” I liked his answer, even if he was possibly patronizing me a bit. It has taken me a long time to come to an acceptance of a treatment plan that is not with the intent to cure me, but I can accept this approach much easier if I am still allowed to hope for a cure at some point, . . . and I do.

After several phone calls, I am now likely able to get into a trial at Huntsman Cancer Institute of the CDK inhibitor, plus two other estrogen blockers with it, starting in September. I feel so good about this plan, and that was what I was praying for; something that felt right.

“Living with cancer” is something I have done for a long time, and I can continue to do it for a long time if necessary. And if “living with cancer” is necessary, you can bet that I will live the heck out of my life! I will be the healthiest person you know with cancer, and I will plan on setting some sort of record for the person who has lived the longest with metastatic breast cancer! ;) And really, I will just do my best to live with whatever comes my way, which is all that any of us can do anyway.

Thank you for those of you who helped with our kids while we were gone this week, and for all of you who have sent encouraging messages or who have prayed for us. I am grateful for so many truly wonderful people in my life, for feeling well, for a husband who loves me enough to take me all over for the best treatment, for my sweet kiddos, and for a relationship with my Heavenly Father. I am blessed.

Round 2

Friends,

We found out about two weeks ago that my cancer has returned. This time it is only in one small place in my lower back, in the iliac bone. Of course we are disappointed that I am no longer in remission, but this is not a huge surprise like the first time either. We have known that it was likely I would deal with this cancer again at some point. We just wished it would have been a longer remission.

Branden and I are still figuring out what my treatment plan will be. I feel great right now, and we are hopeful that I will continue to feel well during treatment. I may, or may not, do chemo. I’m almost certain that I will do radiation to that spot, but there are oral drugs that I may take rather than chemo. We just are not sure right now.

We have one opinion from my oncologist at Huntsman, but have decided that we will take a week-long trip out to MD Anderson in Houston, TX, which is arguably the best cancer hospital there is. We will be going the week of August 18th, (the first week of school for my kids) and I will have all sorts of tests while I’m there. I should come back with the best treatment plan for me, and some peace of mind that we have done our research and received multiple opinions from some well-respected oncologists.

We are really doing just fine. I am optimistic that I will be back in remission again soon. I thank you all for your love, support, and prayers in the past, and ask for your continued prayers. I am so fortunate to have, really and truly, the best family (on both sides) and friends. I am grateful for my faith, my husband, my children, and I feel strong and happy. My life is wonderful. My only complaint is that darn cancer! Hopefully we can get rid of it once and for all this time! I have learned that all I can to do is ‘do my best’. The rest is in the hands of my Heavenly Father.

I won’t begin any sort of treatment until after my trip next month to Houston. We will keep you posted on what we learn when we get back. And don’t worry, we really are doing fine, I just wanted to let you all know since I have shared this with you in the past. Love to each of you!!

Denise

Video for the AF Half Marathon

Video for the AF Half Marathon

Written Jan 15, 2013 10:01pm

Denise’s Story

This is a little video clip that was made for the AF Half Marathon.  This is the half marathon I did last summer.  I like having a little video for me and my family as a memory of this event and what it meant to me at the time.
It is obviously a very brief little summary of my cancer story, and mostly focused on the race they are advertising, but that race really did mean a lot to me, so I was happy to be a part of their advertising for it.
I’m still feeling great and am training for this race again for 2013.  Just thought I’d post this to my caringbridge link for anyone who wants to view it.

Done With Chemo!!!

Done With Chemo!!!

Written Nov 6, 2011 10:42pm

I don’t know if it has really hit me yet that I am done with chemo, but I am!!!  It will probably be more real for me this Friday when I DON’T go spend the day in the hospital!!
I brought Alec with me on Friday and we stocked up on snacks and brought a Christmas video and some reading and drawing materials, and had a fun day together in the infusion room.  I know it was probably a little strange for him to see me as a patient and to see me all hooked up to the drip with the chemo drugs going into me.
He asked me a couple of times if it hurt.  I assured him that it didn’t.  The nurses were very nice to him, but they did tell me that they don’t like anyone under 12 to come in the future. Good thing for me I am not planning on going back for any more rounds of chemo!!
I was definitely mentally prepared to be done on Friday, but there was a moment of uncertainty after my blood work came back and my white blood cell count was lower than their standards.  My granulocite number was also slightly low.  I had to wait for approval from my doctor to go ahead and receive my last dose of chemo.  I was relieved when the approval came, because I would have been disappointed to have to wait another week to be done.  So now I have to be extra careful this week to not get sick, because my wbc count is low, and I received chemo, so now it is probably going to go even lower.
When I was almost done, the nurses in the infusion room came around and sang me a little song about being done with chemo.  It was very sweet!  They also gave me a blanket as a parting gift.  This is what they do for all patients when it is their last day of chemo.  I have really been treated well at Huntsman, and have made good friends with some of the nurses there.  I will still go up every 3 weeks for Herceptin until next August, so I will still see them, but I had a spring in my step as I left the hospital on Friday knowing that I was done with Taxol!
My PET scan is scheduled for November 29th.  I will also meet with the radiologist next week to determine the plan for radiation.  But in the meantime I have about 3 weeks to recover from chemo and to not be treated.
I am so thankful to be done with chemo and to be feeling well!!  I signed up for a 5K Turkey Trot on Thanksgiving, and am so excited to be getting ready for a race!  It will be my goal just to run the whole thing.  I am very slow when I run right now, but it just makes me happy to think about doing a race again.  I will run with a friend and with my sister-in-law.  I am looking forward to doing things that make me feel like myself again!!
I really love all of you who have been reading my blog and encouraging me through all of this.  Thank you so much!  I am looking forward to getting my PET scan and seeing how the chemo has worked.  Because it was looking good halfway through the summer, I anticipate a good result, but how good, I do not know.  I also want this scan to be clearer, and it should be because we will wait a little longer to get all of the drugs out of my body that can interfere with the clarity of the image.  I will write again after I get my PET scan results on the 29th.
Yay for no more chemo!!!!  =)

Just one round of chemo left!!!

Just one round of chemo left!!!!

Written Oct 31, 2011 10:33pm

I am so excited to be done with chemo!!  It has been since the beginning of May that I have been either in chemo, hospitalized, or trying to recuperate so I could get back into chemo.  I have felt pretty good during this last half of chemo, but STILL, I will be delighted to be done!!!!
This Friday will be my last day of chemo, hopefully forever!!!  Branden is going to be out of town for work, but I decided to take Alec with me for the day.
I have really tried to shield my kids from all I have been going through as much as possible, but a couple of weeks ago as I was sitting in the infusion room with the other cancer patients, I looked around and thought that it would be a really great experience for Alec to come with me for chemo one time.  He is almost 9, and pretty mature and sensitive for his age.  I think it would be good for him to see what I have been doing when I have been getting treated over the past several months, and for him to see other people going through similar things.  I want him to know that a lot of people are going through hard things, and hopefully for him to gain some compassion.
We will do something for cancer patients this year for Christmas, and it would be good for him to feel some connection to the people we will serve.  Plus, it will be nice to have several hours with just Alec.  I will have him bring a book and some drawing materials and snacks, and we will have a fun day together in the infusion room!
I have had some great conversations with other patients during chemo the last few weeks. When you are in treatment for cancer, the conversations you have with other people going through the same thing is very different than at other times in your life.  I won’t elaborate, but I have been really touched by talking with some people who are very different from me, but with whom I can totally relate!
I have been much more emotional while I have been in chemo.  I don’t know if it is the drugs, or the overall feeling of being so vulnerable that causes it.  Even when I don’t think I am emotional at all, I will sometimes get all teary about some little thing.  Other times I just try to ignore anything that could cause an emotional response so that I won’t get all emotional!  I am not sad or anything.  Really, I have been very happy, but I am just a little bit of an emotional basket case sometimes!!  =)
After chemo this Friday, I will wait 3 weeks and then get a PET scan. About a week after that I will begin radiation for 6 weeks.
I had another mugascan this week to check my heart, and it is looking great!  It started at 64% at the beginning of chemo, and got down to 49% over the summer.  It increased to 50%, and now it is back up to 55%.  That is really good news, and shows that the damage done to my heart from chemo is not permanent.
We took our kids trick-or-treating tonight and had a lot of fun.  It was hard getting everyone to bed though, because they were bouncing off the walls after all that candy!!

Catching up

Catching up

Written Oct 14, 2011 11:07pm

I didn’t update last week, but it was just chemo as usual!!  I did get a cold and was a little worried that my wbc count would be too low for chemo, but all was well!  I still haven’t gotten rid of my cold, but I was able to do chemo again today, and now I am down to a grand total of 3 rounds of chemo left!!!  Woohoo!!  I have been able to run/walk most days this week, and have felt pretty good despite my cold.
After chemo we will wait a few weeks and do another PET scan to see how things are looking.  Then we will need to make some decisions about how many areas to radiate.  Radiation can only be done once in a certain area, so if I need radiation in the future in that area I won’t have that option if I do it now. But I think that if I we see any cancer that is visible on the PET scan I will probably opt for radiating that area.
I need to get some further opinions, and think and pray about it before we decide.  Even if we don’t see anything visible on the PET scan, it would still be tempting to radiate the 3 areas where the cancer spread to my bones just to make sure we get rid of it, but I don’t know if that is the smartest thing to do or not.  It is standard procedure to radiate the original area of the cancer and lymph nodes that were removed already during surgery, so no decision needs to be made about that.
Then I will be in radiation for 6 weeks.  It is every day, Mon-Friday, but doesn’t take as long as chemo, and I won’t have to drive as far for it.  Right now I am just looking forward to finishing chemo, and getting the PET scan.
An interesting thing happened a couple of days ago.  I was called randomly by a girl whose sister lives in our neighborhood.  She is doing a segment on a Utah show called “Good Things Utah”.  She wanted to talk about breast cancer because October is breast cancer awareness week.  She remembered that her sister had told her about me a few months ago, and gave me a call.
She wants to put a face with her little story on breast cancer, and will be highlighting me on the show next Friday.  That will be a week from today at 10AM on ABC channel 4 for those of you in Utah who may be interested in it.  She said it will be really short.  I will probably sit in the audience, and they will show a picture of our family and briefly tell our story.
Alright, I am going to bed now!  Countin’ down baby!!  Only 3 more!!!  =)

The light at the end . . .

The light at the end . . .

Written Oct 3, 2011 10:31pm

I now have only 5 weeks of chemo left. I am still feeling pretty decent, although I do feel the fatigue sometimes.  I was able to receive treatment again last Friday, and it seems that I will continue to be able to be treated because these Neupogene shots that I get during the week are doing the trick of keeping my wbc count up.  I will definitely have a party when chemo is over!!!!
I have been growing some hair back.  For some reason I have not lost my hair with the Taxol, and so my hair has been growing back slowly over the past few weeks.  I now have a soft covering on my head that is about a centimeter long.  I have even been wearing it out without a hat a lot lately.  It looks really really short, but I am tired of always wearing hats and scarves!  I am just trying to pretend that I am stylish enough to wear my hair that short intentionally!!
I got a speeding ticket this week.  Branden got one a few weeks ago, so I guess we have both been officially welcomed to Utah now!  That was the first ticket I have gotten in 20 years!!  (Not that I’ve never been pulled over all that time.)  Apparently my chemo look and my pitiful driver’s license picture didn’t elicit much pity from the police officer!  You would think that all this cancer stuff would at least be good for getting me out of a ticket!  But the good news is that I didn’t really care!!
  My ticket was in American Fork, which is the same place that my wallet was stolen earlier this summer.  I was thinking later that I should have told the officer that since they never recovered my wallet (despite the fact that I filled out 3 different police reports for locations that my credit card had been used and where there were cameras) that maybe he could let me out of the ticket and we could call it even.  I wonder if he would have gone for it?!!
Branden and I are going to celebrate our 14th anniversary this weekend. We are going to stay overnight up in Salt Lake and do some fun stuff downtown Friday night. I am so grateful to have such a wonderful husband.  I love you Branden!!!

Halfway done with this half of chemo! =)

Halfway done with this half of chemo! =)

Written Sep 23, 2011 10:37pm

Today I had a long day at the hospital.  We started up with my follow-up mugascan.  This is the heart scan that I was kind of concerned about.  Last time the stroke volume was 49%, and they said that if it went any lower I would need to stop taking the Herceptin.  I have been trying to exercise as much as possible over the last 3 weeks to strengthen my heart in hopes that I can continue taking Herceptin, because it is such an amazing drug.  This week I was a little more tired and didn’t exercise as much, but the previous 2 weeks I did a really good job.
The mugascan showed that my heart has at least stayed about the same, if not improved.  I was up to 50%.  Branden and I were so grateful that I get to continue on the Herceptin.  The doctor thinks that my decrease from 64% (before I began chemo) down the the 49% a few weeks ago was caused from the Adriamycin that I got so sick from at the first of the summer.  My heart and body still seem to be recovering from my first chemo regimine!!
My wbc count has also continued to be good enough for chemo.  Today was my 6th dose of Taxol (my current chemo drug), and I now only have 6 left!  Then I will be DONE with chemo!!!  I am really getting excited to be done.  We will wait about 3 weeks after chemo to repeat a PET scan so that we can get clear results (without the Neupogen in my system).  I am really looking forward to getting a clear and hopefully clean PET scan and getting into a remission for a long time!!!
Thank you all so much for your nice and encouraging messages and emails.  I am amazed and grateful every day at how many good people are all around me.  It really has lifted me more than you may know.  Thank you, thank you!!!

To you who have lifted me- by Denise Neish

To you who have lifted me- by Denise Neish

Written Sep 18, 2011 11:08pm

I stepped out into the world one day to go for a run.  I was eager to try out my brand new running shoes.  The sky was brilliant as the sun rose over the mountains.  I breathed in the fresh crisp air as I laced on my shoes.  I was ready for this run!
It was hard to contain my energy and strength as I bounded out onto the pavement.  I smiled at the little flowers I saw blooming on the side of the hill.  It was almost effortless to glide forward at a nimble pace.
Sometimes I accelerated without even noticing.  Other times I stopped and dawdled at the side of the road.  Frequently there were others around me.  We ran together for a while and compared running shoes. We gleefully splashed through puddles, and trudged up some steep hills together.  We held our arms up in the air as we recklessly sprinted down the hills and into the valleys.
Soon one was running beside me.  He made my heart pound deeper. My steps grew in rhythm with his.  We turned onto a new path together. It felt familiar.  It was our own.
Our new path was narrower.  It was a lovely winding path with playful white flowers freckled along the side.  We splashed in the cool mountain stream that bordered our path.  We climbed a tree to get a better view and chartered our course.  Our shoes were slightly worn now, but we had taken good care of them, and knew that we could run many more miles on them.  We loved our new path.  We vowed to run on it together forever.
We decided to share our path with four new runners.  We were so excited to show them everything.  We laughed as they marveled at their new shoes.  We taught them to lace up their shoes, stretch, and run, run, RUN!!!!!  If they fell, we picked them up and brushed the dirt from their knees.  “Your wound will heal” we said, “It is not so bad.  Now get back up and run!“
It was hard to keep up with them sometimes!  But other times they lay peacefully in our arms as we reverently watched them sleep.  They were amazing.
We held hands and ran slower so that we could all stay together.  A steady pace forward and side by side was our goal.  The radiant sun was still high in the sky.
Suddenly a thorn shot through my shoe and tore deeply into my foot!  I was stunned at first and stumbled.  I could not get the bleeding to stop.  I fell and cried.  The wound was too deep to heal, I was told. I could see the wound, but I couldn’t feel the pain.
Someone cries beside me.  He takes my hand again.  We are wounded together.  We are lost from our course.  How could we lose our beautiful path?  This was not what we planned.
We tell our little runners that it will be okay.  It will heal.  Then we continue to run on our new path as the sun begins to hide behind the mountain.  We quicken our pace to beat the setting sun.  We hold each other’s hands.  Our little runners can feel our grips tighten.
When I am too weak to run, he carries me for a while.  I try to smile and I run when I can.  Our path gets steeper and darker.  I try to move forward on my own, and our hands lose contact briefly.  I can feel the pain now.  Our little runners cling to us and stumble when we do.  We reach out to find one another again and turn the corner.  The path is unfamiliar ahead.
If we cannot get back onto our beautiful path, can we make this one ours?  We decide to recharter our course.  First we must stop and remove the thorn, we decide.  It will hurt, but it must come out if there is any chance for it to heal.  We let ourselves believe that it can heal.  We cannot remove my shoe completely or I will have to go home right away.  We know that we will both end our run at home, but we want to enjoy the path together as long as we can.  We try to remove all of the thorn.  We don’t want to leave any part behind.
I sob with pain as it being removed.  Sometimes I stop and take a deep breath.  “We have to continue“, I say.  My will to be rid of the thorn is increasing.  I want to believe that my shoe can be as good as new.  Our little ones play alongside the path, unaware of the thorn.  I want to watch them grow into strong runners.  There is so much for me to teach them before we go on separate paths.  They come over to us when they see the clouds darkening, and we tickle them and tell them to go play by the stream for a while.  This will just take a moment longer.
We struggle to get rid of the thorn.  Feeling weak, we cry out to God.  “Please heal this wound!!”  Others encircle us and lift me to my feet.  “If you do your best to repair your shoe, I will take care of your foot”  comes the answer.
We summon all our strength and pull as hard as we can on the thorn.  It comes out but leaves a  wound in my foot and a hole in the shoe.  We ask others for help to repair the shoe.  We want to do the very best job we can so that the shoe will last a long time.  We have to use what is around us to repair it.  The repair job seems solid, but the shoe will never be completely the same.
I look at all who have gathered around me on our path.  They are telling me that it will be okay.  They encourage me to keep running.  I don’t like this path as much as the one I started on, but I am not alone like I was at the beginning of my run.  I decide that my foot needs to be stronger if my shoe is weakened.  I did not start this run only to go home early.  I will run better than I have ever run before!
I take his hand again with renewed energy.  I can feel my foot healing already.  We take our four little runners and begin again.  The path takes us around another corner, and the sun is still shining.  We only thought the sun was setting because of our place on the path.  My shoe is working well, but we know that all of our shoes will wear out eventually.  Then we will go to our beautiful home and rejoice at the new shoes that await us there that will never wear out.
But in the meantime, we look around and notice that the path is much more interesting than we thought.  The shadows only make the sunlit parts look brighter.  There is still a long way to go on the path before we reach our home.  We will never be the same as we were before the thorn.  In many ways we are stronger.  We are more aware that our run cannot last forever, but we are not afraid.  We vow to run our best, to splash in the stream, to raise our hands in the air and run recklessly down the hills, to lift those we see who have fallen on the path, to tickle our little runners, to teach them all we know, and to hold hands all the way home.

One more down!

One more down!

Written Sep 10, 2011 10:05pm

I was able to do chemo again on Friday. . . . barely!!  My white blood cell count went down again, and it was pretty close, but they let me receive treatment.  I just had one neupogene shot last week, and I had two the week before, so we decided that I need to have two again this week.  I think if I get two shots I should be able to get my wbc count up again for next week.  I’m just glad I did not have to skip a week this time.  I am finally really getting going on this chemo.  I have had 3 weeks in a row of treatment.  If I can keep going without problems, I will be done with chemo in 8 weeks.  I can’t even think of how excited I will be to be done!!!  =)
I am still feeling well, although a little more fatigued, but not bad at all compared to how I felt on the other chemo.  And I don’t get nauseous at all from this chemo, so that is nice!
My final mugascan results showed 49%.  It is not that great, and shows that my heart has undergone some trauma from the chemo so far.  I will get another mugascan in 2 weeks so that we can determine if it is the current chemo, or the previous chemo that did the damage.  I think that it must have been the previous chemo because this one is not nearly as harsh.  If it gets any worse I will have to stop chemo.
I feel like I need to exercise as much as I can to make sure that my heart stays strong, (or gets stronger).  I don’t like the idea of my heart weakening.  Pretty much, from here on out I need to have crazy good healthy habits.  I am trying to eat right, and exercise as much as I can.  I really feel better when I go on a walk or run each day.
I am really hoping that after I am done with all my treatments that I am able to actually be a good runner again.  I know I have bigger things to worry about than that, but I really do love running, and part of what I love about it is doing well in races, and feeling good when I run.  I want to be able to enjoy that again.
On a funny note, I was in the elevator at the hospital (with a scarf on my head) and an old man looked me up and down and said, “You look pretty good for being bald!”  I didn’t know whether to be offended or flattered!  I just said, “Thanks!”
I haven’t been “checked out” for a while now, so I guess I’ll take what I can get!!  =)

Lovin’ the Taxol

Lovin’ the Taxol

Written Sep 4, 2011 10:06pm

I was able to do chemo again on Friday.  My wbc count had increased from the previous week, probably due to a couple of shots I had during the week to help stimulate my wbc count.  I was glad we did that so that I could continue chemo.  I will get one shot of Neupogen this week, and see how that goes.  If my wbc count continues to be good, I will not get a shot the following week.  This is the first time I have done two weeks in a row of chemo since I started on the Taxol/Herceptin regimen.  I also had Zomata, which is a bone strengthening drug that I take during chemo once every month.  This helps for cancer that has spread to the bone.
I am still feeling good overall.  I am a little more tired, but not much.  I also had a mugascan this week.  This tests my heart strength since chemo is very hard on the heart.  The results are given in a percentage.  50% or above is normal.  Mine was 64% at the very beginning of chemo.  Now it is at 50.5%.  It is still within normal range, but has obviously decreased a lot.
The doctor feels like this was probably from this summer when I got so sick from the Adriamycin (the “Red Devil”), rather than from the Taxol that I am currently on.  But we will do another scan in 3 weeks to see if there is any change.  If it gets below 50% I may not be able to continue chemo.  At least my heart strength can increase through exercise after I’m done with chemo, so it should hopefully not be permanently weakened.
I am happy that I am continuing chemo now.  I know that it will work well, like it has in the past.  I have enjoyed feeling peppy for a while now, and it has done wonders to lift my spirits.  I know that if I continue with chemo, this tired feeling that is setting in will probably increase a bit.  But I will know that I am getting closer to being done with chemo, and that is a good feeling.
I have been very active this week, and have even exercised a time or two.  I want to do that more now that my little ones are going to start preschool this week.  I think that running/walking helps me to have more energy and feel better overall.
Lately I feel like I have been so excited for all the fun things that I can do when I am feeling well.  I have been making the most of each day and really enjoying it.  There are so many fun things to do that I want to have energy for them all!!  I love playing with my kids, exercising, practicing the piano, reading, writing, talking with friends, and I have even started making some Christmas gifts this past week.  I just want to do stuff while I am feeling well!  I think that even after I am better and done with treatment I will appreciate my life and all that I can do with it more than I ever have before.
I have also been feeling very grateful for a wonderful husband, good friends and family who continue to give me a lot of support and love through all of this, wonderful children, a nice house and neighborhood to live in, and the comfort of knowing that my Heavenly Father loves me and is looking out for me and my family.  I know that He lives and I have seen His hand in my life many times.  I know that He loves each one of His children.

Chemo at last!

Chemo at last!

Written Aug 27, 2011 11:05pm

I never thought I would be so happy to hear that I “got” to do chemo, but yesterday I felt like cheering when I heard that my white blood cell count had gone up enough for me to continue chemo.  I just was tired of being on hold, and I am wanting to continue to fight the cancer with chemo before moving on to another type of treatment so that I can get the full benefit of chemotherapy.
My wbc count was barely high enough to recieve the Taxol yesterday, but my doctor let me with the warning that it is highly likely that the Taxol will decreased my wbc count again, and that I may not be able to do it again next week.  But we will just take it week by week.
We talked about alternative treatment plans if I cannot tolerate the Taxol without my wbc count plunging every time.  But hopefully this will work.  I will be taking a couple of shots this week to help my wbc count, so hopefully that will work, and I will be able to do the weekly Taxol/Herceptin treatment that we had originally planned.
I could not sleep very well at all last night, even after taking a sleeping pill and Nyquil.  This happened last time I had Taxol too.  I guess that is just a side effect.  But other than feeling a little more tired today, I don’t feel any other side effects of the chemo right now.
Branden came with me yesterday, and since I was taking Taxol, which can make your fingernails and toenails die, I had to have them in buckets of ice water while I was receiving the Taxol for about an hour and a half. Branden always gives me a hard time if I have to take my fingers out of the ice water for a little bit because it hurts so much.  I can usually keep my toes in the whole time because they just get numb, but fingers just have so dang many nerves in them that it is really hard to keep them in freezing cold ice water for that long!
I challenged Branden to put his fingers in the ice water for as long as he could.  Any guesses on how long he did it?  It was probably less than 2 minutes!!  =)  It was killing him!  He had this tortured look on his face as he tried to keep it in for a little bit longer, and he said, “okay, okay, this is pretty bad!”  I just wanted him to have a little sympathy for me!!  =)
I got my official Utah drivers license in the mail a couple of days ago.  It is quite the mug shot!  I look so mad in my picture!  That is because when I went to take my test, I was in this long line, and didn’t have all the exact right documents needed, so I had to first go home again to get something else.  (It was hard to get the right documents for identification and residency because my wallet had been stolen with my old driver’s license and social security card!)
I went in shorty after I had gotten home from the hospital (about 4 weeks ago), and I still felt pretty weak, but was determined to get my driver’s license taken care of that day.  I had babysitting all lined up, and thought I had all the documents I needed.  After I went all the way back home and got through the long line again, I wasn’t in any mood to hear the guy ask me if I could take my scarf off for the picture.
I suddenly felt so embarrassed because there were all these people around me, and he was asking me to reveal my bald head in front of everyone!  I just looked and him and said, “I’m bald!  I’m going through chemo right now.  Do I really have to take my scarf off?!”  He sighed and said, “Just a minute.”  He went back and conferred with several people while I stood there trying to keep myself from crying in front of everyone.  I don’t know why I let myself get so emotional about it, but I guess I just felt humiliated!!
I heard him say to a police officer that he was speaking to, “Well, it’s not for religious reasons.”  Anyway, after they kept me waiting for a while and discussed it, he came back and said that I could leave it on.  I said, “I’m sure other people have come in here who are in chemo before.”  Then I sat down and had my picture taken.  It was not a very happy picture!!  So now I get to have this driver’s license picture of a mad, skinny Denise with a scarf on my head until 2016!!  =)

Feeling good, but no chemo!

Feeling good, but no chemo!

Written Aug 19, 2011 4:50pm

After feeling great all week, I went in for chemo today, hoping that my blood work would show that my white blood cell count had gone up from last week, and that I was ready to get going on my chemo again.  I am taking Taxol and Herceptin now.  Taxol is the chemo drug, and Herceptin is another type of treatment that is very good, but is not really chemo.  The Taxol is what I was hoping to get.
Unfortunately my white blood cell count is even lower than last week!  I was able to get the Herceptin, but then I just went home after that.  It made for a shorter day at the hospital, and I don’t get bad side effects from Herceptin like I do from the Taxol, but I felt disappointed to not be receiving the treatment I need.  I am concerned that my body might just really not like the Taxol, and I may not be able to continue chemo if my white blood cell count doesn’t go up soon.
There was another lab result that is an indicator that my body is preparing to make more white blood cells soon, and that number was very low too, so I don’t know if it will be any better next week when I go in or not.
Dr. “B” feels like my bone marrow is still very low from the first type of chemo I was receiving when I got so sick.  Then when I started my first treatment of Taxol two weeks ago, it made my body react badly because it remembers what the other chemo did to me.  (Something like that!)  We are just going to play this week by week and see what happens with my white blood cell count next week.
In the meantime, I do feel good, and have been able to run almost every day this past week.  It has been beautiful weather, and I have thoroughly enjoyed getting out in it!  I missed out on a lot of this summer, and have been trying to make up for it a little bit these past few weeks.  I even hiked part way up the mountain that is behind our neighborhood.  I would have gone higher, but I saw a snake and decided it was time to turn around!!  =)
My niece, who has been living with us and helping me take care of my kids and house, is leaving today.  I am glad I feel a lot of energy right now so that I can hopefully handle things without her.  It has been a while since I have taken care of my kids all by myself!  (Pretty sad, but I will have to get used to it again.)
My oldest, Alec, will start school on Tuesday, and I found a preschool for Max and Lily which will begin two weeks later.  They will go everyday from 9-12, and Macy will go into their toddler room for daycare during that time.
I would rather just have them home, but I don’t know how I will feel during the rest of treatment, and after chemo I still have radiation for 6 weeks, then a surgery, etc., etc., so I felt like we needed to have some time each day for me to rest, or get things done without the kids.  And if I continue to feel well throughout all this, then who knows what I will do with 3 free hours each day!!

2 down, 10 to go!!

2 down, 10 to go!!

Written Aug 13, 2011 12:04am

Today was my second of the 12 rounds of chemo that I will be doing with Taxol and Herceptin.  I have continued to feel great this week, and I appreciate feeling well so much more than I ever have in my life!!
I don’t know if this will continue throughout the rest of chemo, but even if I start feeling worse, this has been a good reminder for me of how I will feel again when chemo is over.  If I start to feel fatigued or sick, I know that I have something to look forward to when I am done with all of this!!  I am so glad that I am only sick from the chemo, and not feeling sick at all from the cancer.  That means that I can feel like myself again at some point.
I also feel like I have had a much better attitude this past couple of weeks because of how good I feel.  It’s interesting how much mood can be effected by how we feel physically.  My kids have been happier too because I have been happier.  I need to make sure to keep up this good feeling even if I start to feel worse throughout the next several weeks of treatment.
I just am so grateful to be able to do normal things like exercise, play with my kids, run errands, go out with Branden, see friends, clean the house, and have the energy to do it all.  I even went on a big water slide at 7 Peaks Water Park this week when Branden had a work party there.  It was the most normal “healthy person” kind of activity that I have done all summer long!!  Nothing is healing right now (like from surgery), and I am not too nauseous or weak or dizzy to go on a crazy ride.  It was so fun!!
So, for chemo today, despite the fact that I am feeling so well, I was not allowed to do the Taxol, because my white blood cell count was too low again.  I did get the Herceptin, but that was it.  It made chemo shorter, and I won’t have to worry about feeling bad this week because Taxol is the one with the side effects, not Herceptin.  I was disappointed that I could not do my full treatment, because I want to make sure we are fighting this cancer as aggressively as possible.  But then again, it’s nice to know that I will not get the side effects from the Taxol this week.
My white blood cell count is not dangerously low.  My doctor is just worried because of how much it dropped, and because of how sick I got before when my white blood cell count basically went to 0.  I went from 14 last week (which was slightly high due to the steriods I had taken), to only 3 this week.  Dr. “B” just wants to see my numbers go up some more by next week.
I hope that it is up next week, because I don’t want to miss another treatment.  It is not a big deal that I missed one, since we will be doing so many, but I want to know that I am fighting this thing.  If I’m going to be in chemo, I want to just do it aggressively and know that I did my best when I am done.
I was surprised that my wbc count was low since I feel so well, but my wbc count has been all over the place the last several weeks, so I guess I shouldn’t have been too surprised.  I guess it is good to be cautious though, because I certainly don’t want to go back to the hospital again.  Overall, I feel great, and I will just hope and pray that my white blood cell count increases this week.

Starting chemo again, and the run

Starting chemo again, and the run

Written Aug 7, 2011 10:59pm

On Friday I started chemo again.  I will admit that I was a little nervous to get going again, because I really have been feeling well this week, and wanted to keep that going.  BUT, . . . . I can’t stop chemo forever, or I will never get done with it!  My new chemo plan calls for 12 weekly treatments at a lower dose.  My sister and her family made a little song about it called “The 12 Days of Chemo” for me.  (like the 12 Days of Christmas).  I thought that was very clever!
On Thursday night I had to take some steroids to help me not get an allergic reaction to this new type of chemo that I am starting.  On Friday, right before my treatment, I had to take more steroids.  I don’t really like the idea of taking steroids, but it did seem to give me an energy boost for the weekend!
This was the first time I have gone to chemo by myself.  I laughed that morning when Branden asked in our morning prayer that I would “have fun at chemo”. In fact, on the drive up I was thinking about how I needed to be tougher mentally because I had been feeling a little wimpy lately.
Then right after I said a little prayer in my head about needing help, I turned on the radio and “Eye of the Tiger” just happened to be on!  It reminded me of getting ready for track meets with my old college roommate who always used to listen to that song before her races. Right after that, “Don’t Worry, Be Happy” came on.  It was great!  The whole drive up there were all these songs on the radio that were great for “pumping me up” for chemo.  When I got to the hospital, I actually had a pretty good day, because I know all the nurses and doctors up there by now, and I had a lot of fun conversations with people.  I didn’t feel weird or sick at all, and I drove home still feeling pretty good.
I was so glad that I felt good, because the next morning was the run/walk that my Boston friends organized to show their support.  There were people who wore t-shirts for me, and ran or walked wherever they lived, all over the US, and a few other countries as well!!!
A group got together in our neighborhood and started right outside our house.  I was so glad that I felt good, and was not in the hospital or anything for this event.  It was nice to be able to go out with everyone and be a part of it too.  It was a beautiful day here in Highland, Utah, and I felt very loved by new and old friends.  I walked a loop around our neighborhood, and felt great.
It has been a little surreal sometimes to be receiving attention and support from so many people. There is a part of me that doesn’t always know what to do with all of it!!  But I have had to be very open throughout this whole experience, and have found that it is easier that way.  I have gained a lot of strength from others around me, and have been lifted many times when I needed it the most.
Thank you, once again, to those of you who have reached out to me.  I realize each day how grateful I am for the wonderful people in my life.

Birthday Extravaganza!

Birthday Extravaganza!

Written Jul 31, 2011 12:40am

When I was in the hospital on my birthday, Branden was planning a “birthday extravaganza” for me (as he called it!).  I have been home over a week now, and am feeling better each day, so we decided to do something fun this weekend for my birthday.
This week I think my body has been in recovery mode.  I feel hungry all the time and still tired a lot too.  So basically, I eat and sleep a lot!!  I have had a few days when I wondered if I was getting sick again.  I was tired or dizzy a lot.  But then the next day I would feel great.  Overall, I am feeling better each day, and am so happy and excited to be feeling well and to be home and enjoying my family and friends.
So yesterday after Branden got off work we left for Park City to begin my “birthday extravaganza”.  We went out to eat, and drove around Park City a bit.  I was feeling very dizzy and tired, and I was frustrated about that because I wanted to feel good for our fun weekend.  So we stayed at a hotel, ate some dessert and watched a movie.  It was so fun.
Then we decided that we both had not been getting enough sleep lately, so we each took a sleeping pill.  (We don’t normally do this, but felt that we really needed a good night’s sleep.)  I guess it really worked, because we slept in until about 10AM!!  We got a late start on our day, but then we went to a delicious little restaurant on Main Street in Park City and ate some amazing french toast with carmelized bananas and strawberries on it.
I am telling you, I have become a pig since I left the hospital!!  It feels so good to be able to eat, and I feel better when I eat a lot each day.  I have probably gained about a pound back each day since I left the hospital!  I am still about 5 pounds under my normal weight, but I probably better slow down the pigging out a little!
After our fun brunch, we went to the outlet malls and shopped for hours.  We found some great bargains and basically we each got new ward robes!!  It was fun, and great weather to be walking around outside.  I felt so good today.  I was surprised that I was able to walk around for so long and feel good all day.  I guess shopping gives me power!!!  (Maybe the super long sleep and all those calories from the french toast had something to do with it too.)
We decided to finally come home this evening.  My niece was watching our kids, and it was fun to see them after being away overnight.
I should be able to go to church tomorrow for the first time in several weeks.  That will be nice, and great to see people.  I have loved seeing some friends this week.  It is great to see people after living in the hospital so much lately.
I received a beautiful blanket from some church friends in San Diego.  It was a quilt that they had made that had some encouraging words on it as well as signatures of many of my friends.  I was also sent some nice cards.  I almost started to cry when I read the words on the quilt.
I am continually amazed at how many people are willing to serve my family and help us in so many ways during this time.  I am just so grateful for all of you.  I have received so many cards, little gifts, meals, visits, childcare, and other services since I have begun chemo.  Many times I have turned down help that has been offered to me just because we have already had so many other people who were lined up to help us.  It is all from friends and family members who just decide to care about me and my family, even though they have plenty of stuff going on in their own lives to keep them busy, I am sure!!
I am thankful that I am feeling so well now.  I have a list a mile long of stuff I need to get done after being so sick these last few weeks.  I am trying to get stuff done, but I can’t catch up all at once.  I am just glad to be home!!!

Home and feeling well!!

Home and feeling well!!

Written Jul 26, 2011 11:24pm

I spent one week in the hospital, and got home last Friday.  My mouth sores are almost all the way gone, and I can finally eat again.  This has helped a lot in my recovery!  And, I missed eating!!  I think that having the nutritional supplement in the hospital was what finally helped me turn a corner and start getting better.  I wish we would have done that the first time I was in the hospital.
The last few days I was in the hospital, I felt so emotional.  I missed my family so much, and just wanted to be well and home with them.  When Branden came to pick me up with the kids, I felt like I hadn’t seen them for so long.  The kids were so happy to see me, and Macy just kept looking at me and laughing the whole way home.  It was so cute!!  When we got home she climbed up in my lap and we played baby games for about an hour straight.  (That is a long time for peek-a-boo and other similar games!!)
Lily and Max were quickly taken by Fenja, my niece who has been staying with us and taking care of the kids.  She took them to St. George (4 hours away) for the weekend.  She went to her parents house, and my sister watched them while she was able to get a little break and work on some of her summer classes.  They just got back today, and it was so great to see them again.  Although, I must say that our house is much calmer without them here!!
Over the weekend I sometimes felt tired or dizzy, and was often scared that I was getting sick again.  Fortunately I was not getting sick.  I have felt better each day, and felt really good all day today.  I think I am finally done with the hospital for a while.
I had a doctor’s appointment today and found out that my white blood cell count is continuing to go up, and all my other numbers were looking really good, so I am really finally getting better.
We have a new plan for chemo.  My doctor seemed to feel like it was very serious that my white blood cell count was so low for so long, and that I got so sick.  She kept telling me that she was so glad to see me looking so much better and feeling so much better.  She gave me the option of either quitting chemo to avoid these serious side effects, or continuing chemo with a different regimine.
Rather than 4 more rounds of chemo 2 weeks apart, I am now going to do 12 more rounds of chemo every week at a lower dosage.  This will make the chemo take a little longer, but should be just as effective as the other treatment, with less side effects.  I am anxious to get done with this stuff, but I also don’t want to be scared that I am going to go back into the hospital, or get super sick or something.  It would probably be very likely that I could end up hospitalized again if I do the original plan.  I feel like I have tried so hard to be mentally tough through all of this, but my body sort of wimped out on me!!
I want to do what is best to treat my cancer, and I don’t want to just opt out of the rest of chemo to make life a little easier on me now.  It is kind of funny that I had the option to be done with chemo and I chose to go forward with it, but it is the smartest option long term, and that is what I care about.  As much as I want to be done with treatment, I want, and need, to do it right.
I will start chemo next Tuesday.  My doctor felt that I would not be quite ready this Friday, so I will start on Tuesday.  That will give me the weekend to feel good too.  Maybe Branden and I can finally celebrate my birthday!
I am just so happy to be home, and happy that I really do feel better this time.  Thank you so much for the prayers and encouraging messages I have received from so many of you while I have been in the hospital.  I am so grateful for wonderful friends and family!!!

Birthday at the hospital!

Birthday at the hospital!

Written Jul 19, 2011 11:51am

Well .. . . . staying at home didn’t work out as long as I had hoped it would.  I was really never better.  I wanted to be home, but I still couldn’t eat because my mouth sores were just as bad as ever, and I was slowly losing weight, and losing energy each day.  I tried to get up out of bed in the morning, and it would take me several tries because I was so light-headed.   I had to sleep frequently throughout the day, and I just wasn’t getting better as I had hoped.
I assumed (and the doctors told me) that my mouth sores would get better each day, but they weren’t, so it was impossible each day to get the nutrition I needed in my body to feel good and to just function.  I loved being with my kids, but I couldn’t really take care of them at all.
Finally, that Friday, I had a doctor’s appointment to see how I was doing.  After taking my blood work, I waited for my doctor.  When she came in she was reviewing the results of my bloodwork.  I assumed that the white blood cells were going up as they had been when I left the hospital.  Instead they had plummeted!  I knew that I didn’t feel great, but I didn’t know the bloodwork would confirm it.
The Dr. said, “We are going to need to incarcerate you.”  I said, “Like right now?!”  She said, “Yes.”
My niece was with me, so she was able to drive the van home and be with the kids while I stayed here and get into a new room.  I kept thinking about how it was my birthday the next day for some reason.  I had imagined that I was going to feel good by this weekend, and that I would have a fun birthday weekend with my family and still have about a week before I had to start chemo again. Now, I am still trying to get recovered from this darn chemo that seems to have blown my brains out or something!!  I can’t believe how hard it is for me to recover from it.
I am now on a nutritional supplement that is being fed right into my body.  It has all the nutrition and calories I need in a day.  That makes me feel good because I have felt so much pressure for about 5 weeks to eat and drink enough, and I haven’t been able to do it with these mouth sores, so I have just been losing weight and getting weaker.  Now I can just sit back and let that bag feed me for a while!!  (Although I would love for my mouth to just heal up so I could eat!!!)
Yesterday I had to have a bone marrow biopsy to make sure that there is not a problem in my bone marrow such as leukemia or something.  It was not a fun procedure, but I got lots of pain meds for it.  I am hoping that everything is fine with my bone marrow, but that it is just tired and that’s why it’s taking a while to grow.
In the meantime I am just sitting in this hospital room bored and wishing I could go home.  I have had a few visitors.  Last night Branden brought a video and came up by himself and we had a little movie night in here.  That was really fun!!
I have the best family and can’t wait to get home to them!!

Home

Home

Written Jul 11, 2011 11:11pm

I am finally at home now.  I came home Saturday evening.  I don’t know if I really should be home, because I still am having fevers like I did at the hospital, and I still have mouth sores and can’t hardly eat.  I don’t know why it is taking so long for me to recover, but I am glad to be home.  I missed my family so much!!

In the hospital

In the hospital

Written Jul 7, 2011 12:51am

Since my last entry I was not getting any better.  I came to the hospital twice that week because I was feeling so weak, dizzy, unable to eat, and just sick in general.  Once they hooked me up to an IV for a few hours, but then I wondered how that was supposed to help me once I got home and still was unable to eat and drink enough on my own?
I really tried hard to do what I needed to to get better. I got anything that I thought I could possibly manage to eat or drink, but even swallowing water just KILLED my throat!  In a normal day I would take about 3 hours to choke down a glass of Ensure or chocolate milk to try to drink in some calories, I would drink a glass or two of water, and I would maybe eat half a piece of bread for the rest of the day.  That just wasn’t doing it, and I was feeling worse each day.
Finally my nurse decided to check in on me last Thursday before her shift ended.  I told her the things that were bothering me (mostly my mouth and throat sores), and that I had vomited that morning, and that I had no energy.  She assured me that those were all normal chemo symptoms.
Then at some point I mentioned that I had taken my temperature and that it was 102.2.  That’s when she really started listening and told me that I should have called her right away.  She said that when you are in chemo and your white blood cell counts are as low as mine were, you just can’t get a fever or you have to come into the hospital.  She called another doctor and he confirmed and said that they felt strongly that I needed to come and be admitted right away that evening.
I knew I should be in the hospital, so I was glad that she had followed up with me and that hopefully they could do something for me.  Last Thursday night I was admitted to the Huntsman Cancer Hospital, and I have been here ever since!  I have not had my computer until today.
Since being up here I can see how much I needed to be here.  I had all sorts of infections in my body that I just couldn’t fight off due to basically no white blood cells.
On Saturday they gave me a blood transfusion and I received 2 units of blood.  That was a very positive thing, and I can tell it has helped my energy already.  White blood cells just have to be made by me in my own body though.  While I am getting a bunch of IV antibiotics, my body slowly started making some white blood cells on its own.
The last three mornings my white blood cell count has improved.  This is very good.  My mouth and throat sores are still here, but getting better for sure.  The whole time I have been here I have not had anything to eat until today when I had 4 bites of a waffle, but it just hurt my mouth too much.  I have had a smoothie and a milk shake over the last two days too though, so that is improvement.  I bet by tomorrow I will be able to eat and drink much better because it seems like my mouth and throat are really starting to heal now.  HALLELUJAH!!! Before I can go home, I need to stop getting fevers every day, and I need to be able to eat and drink a little better.  I think those things will happen really soon.
I miss my family a lot.  They came to see me tonight and I wanted to hold each kid, but they aren’t allowed to touch me right now.
Tomorrow is a long-anticipated day for us.  I will be getting my PET scan to see how the chemo has effected my cancer so far.  I am so hopeful that we will get good news about this.  I know that there is still more and different types of treatments to come, but I would really love to know that all we’ve been through so far has been worth it!!  I’m optimistic, but still scared.  I am trying really hard to be braver.  I think we will find out the results from it on Friday.
I am going to sleep now in my comfy hospital bed with a bunch of crazy wires coming out of me, while nurses come in to do stuff to me throughout the night!

So this is the tough part!

So this is the tough part!

Written Jun 28, 2011 10:46pm

I have not wanted to update this journal because I haven’t wanted to be too negative, but I have not felt well at all the last couple of weeks.  I still have gigantic mouth sores, and it is very hard to eat and drink because of it.  When I went in for chemo #4 they almost did not give it to me because my white blood cell count was so low.  My red blood cell count is also very low, and this is probably why I am feeling sooooooo tired all the time.  I could basically sleep all day!  BUT I do have kids to take care of, and that is not possible.
I have gotten a lot of help the last few days.  My wonderful niece came with me for chemo on Friday, and she is still here.  I don’t know how I would have made it through the last few days without her!!  There have also been some other friends who have continued to stop by, take kids for a while, or just ask how I am.  I really am so lifted by all the people who care.
I am hoping for good news on July 7th.  That is when I will have my PET scan to find out how all this chemo stuff is actually working.  I am just praying so hard that it is killing the cancer.  If it is, then this is all worth it!!
I am also praying to feel a little better and get rid of my mouth sores so that I can eat and have energy to take care of my family.  If I’m going to be here, I don’t want to be worthless!!!
I know that this is the tough part, and I am trying to be positive throughout it.  I will admit that it is hard because I feel like I am just trying to make it through each day right now.  But I also know that I have much to be grateful for, and I am!!!  I am also grateful that I am this far into chemo now, and that I’m not just starting at the beginning right now.  I am making it bit by bit!!

Quick update

Quick update

Written Jun 23, 2011 11:10pm

A quick update before I do round 4 tomorrow.  First of all, I have not felt very well at all the last couple of weeks.  I am hoping that I will recover quicker after round 4.  I did find out that my mouth sores are not from a virus, which is good.  They are just good old fashioned chemo mouth sores.  The reason I have felt so bad is because it has been hard to eat with all those sores in my mouth and throat, and because I got a cold, and my red blood cell count has dropped a bit.  I have felt more light-headed and weak.  Last night I even vomited a couple of times for the first time during chemo.  I hope that will be the last!!
BUT, I am mentally doing okay with this.  I hope my mouth sores go away soon, and that my cold gets better.  That would really help.
I can’t do anything to increase my red blood cell count, because my bone marrow is killing my red blood cells in my body because of the chemo.  Weird!!  But I think that I definitely had some good wiggle room on my red blood cell count for it to drop and still be within acceptable limits to do chemo tomorrow.  So, . . . . YAY!  More chemo!!  =)
On another note, I will get my PET scan on July 7th.  That is one day before I am scheduled for my 5th round.  That will be an important day for us to see how chemo is working so far.
Alright, I am going to bed now.  My thanks to so many friends who have helped me this week or visited.  We have seen a few very close friends from various places we have lived over the past week, and it has been great!  Tomorrow my oldest niece volunteered to drive 4 hours up here to come to chemo with me and help with kids for the weekend.  I just love her!!

Thanks for all the support!

Thanks for all the support!

Written Jun 21, 2011 11:09pm

I wish I could respond to each of you.  Tammie, of course I remember you!  Lasley’s, great to hear from you.  And Vickie, I remember you too!!  I appreciate all the prayers, analogies, scriptures, and friendship from each of you.  This site doesn’t let me click and respond to anyone, but know that I am so grateful for your friendship and encouragement.  It does so much for me!  If I didn’t mention your name, sorry.  I love you all, and I am very optimistic that I will feel better soon, and that cancer has no chance against all these prayers!!!  =)

Sick

Sick

Written Jun 20, 2011 11:10pm

So this weekend I picked up some sort of infection, and now I am back to no energy!  I went up to Huntsman today for some bloodwork, and they gave me an anti-viral medication.  I have sores all over in my mouth, and it is very hard to swallow anything.  Mouth sores are very common during chemo, but this is the first time I have had them.  It is gross!!  But this kind of stuff is normal during chemo.  I just need to try to get better by Friday so that they don’t delay my planned chemo #4.  I don’t really want to slow down this process any.  I am glad I went in so that hopefully the medication will work quickly.  I am so grateful for a friend who came today and watched my kids for about 5 hours so that I could go to Salt Lake for all of these tests.  What would I do without great friends!!

More energy

More energy

Written Jun 17, 2011 10:48pm

This week has been different than after the first two chemo treatments.  On Sunday I started feeling way more fatigued than I had before.  I started to worry when I felt the same way on Monday and again on Tuesday.  I was worried that maybe that was the new norm for me right now.

I felt really uplifted by all the kind comments on this site and in my email inbox, and it reminded me that I needed to be tough and positive.

By Thursday I was really dragging, but I told myself all day that I needed to do a good job with my kids, work out, and do all the things that I normally do.  By the end of the night I had done a lot, but I was very discouraged.  I just didn’t want it to be that hard every day to do normal things.  I talked to Branden about how I felt, and we talked and read from the New Testament.  I was reminded last night that even though I should be tough, I should not put it all on myself to get through this.  I can and should rely on the Savior.  He suffered for all of us and knows everything we feel.  He wants us to pray and ask for help when we are having a hard time.  I cannot do this by myself, but I can if I rely on Him.

I tried to think of Him more last night and this morning, and I pleaded for strength and energy.  Today I felt noticeably better all day.  I was so amazed and grateful for this little miracle in my life.  It is a valuable lesson for me to do my best, but to ask for more strength from on high frequently!!  I know God lives and loves each of us.  I need Him more than ever right now, and I can feel His help and love.

I have also felt His love through the love of so many friends and family members who are encouraging me each day.  Thank you!

First Three Rounds

First Three Rounds

Written Jun 15, 2011 12:07am

I have had three round of chemo now, and I want to get this website current so that I can send it out to my friends and family.  I will need to be more concise to get caught up.  It was really hard for me to write the last couple of nights about this whole thing.  I don’t like to be so emotional and I don’t like to sound sad or negative, but I wanted to write my feelings truthfully.  This has been the hardest thing I have ever experienced so far in my life, but I am feeling a lot better about things than I did even a few weeks ago.

Branden and I were sort of numb as we moved from San Diego to Utah.  We went back and forth from trying to be fun and happy to trying not to cry in front of the kids.  I would say that the first couple of weeks in our new place were incredibly hard for us emotionally, and physically.  We were trying to get so much done, and we were also trying to go to doctor’s appointments, help our kids get settled in, and talk to family or friends who needed to know what was going on.  I got really tired of having my diagnosis on my mind constantly.  When I would wake up at night my dreams were always about the cancer.  I wanted to feel normal at least sometimes, but it was impossible for me to stop thinking about it.

Beginning chemo was a good thing, because it made me feel like I was finally doing something about this problem that I have.

A couple of nights before I began chemo, Branden gave me a blessing.  This is a prayer that is especially for me.  Branden really tried to feel the right words he should say.  In the blessing I was told that I will have many healthy years ahead of me.  I have felt much calmer since I recieved this blessing.  I completely believe in it.  I’m not sure exactly what “many healthy years” means, but it sounds good to me at this point.  I believe that it means I will be able to raise my kids and feel good for a long time.  I feel so much better and more hopeful because of this beautiful blessing I recieved.  It just felt right.

As we moved we were overwhelmed with the kindness of friends from both San Diego, who helped us with our move on that end, and with our new neighbors in Utah, who have reached out to us in an amazing way.  We have friends from Boston, San Diego, Michigan, Utah, and Missouri and Iowa (and a few other places) who have sent us messages of support, sent hats or scarves for my now bald head, or who have given money for help with childcare or meals during this difficult time in our lives.  Each day I am amazed at the love and kindness and thoughtfulness of the people in my life.  I was thinking about this as I drove up for chemo on Friday, and it just reminded me how much I have to be thankful for.

Chemo has been tolerable so far.  I sit for a few hours and am injected with toxins that will kill cancer, as well as do other bad things for my heart, kidneys, etc..  I lost my hair a couple of weeks after my first chemo treatment.  For some reason I didn’t shed a tear over my hair.  I guess I just knew it was coming, and I was prepared for it.  My kids have handled it pretty well.  Alec decided to shave his head when I did to “help me feel better” about losing my hair.  He thought of that all by himself.  What a sweet boy I have!!

I have felt some fatigue and some nausea from the chemo, but not too bad.  In about 4 weeks (on July 7th) I will get another PET scan to see how the chemo is working, but until then I just have to assume and hope that it is doing what it is supposed to.

I run/walk a few times a week still, but it is slow and that is when I can tell that I am tired.  But it still makes me feel like my old self, and that is what I need right now.

I think that I will beat this cancer, and I am feeling more optimistic about it all the time.  I am more and more thankful each day for the amazing families that Branden and I both have, and for incredible friends who are showering me with love and support.  It really does lift my spirits, and makes me feel excited to beat this thing!  I have always been more of a private person, but I feel more and more that there is a reason we are all in this world together, so I am trying to be more open, as well as allow myself to be lifted by the kindness of the amazing people that Heavenly Father has placed around me.

I will keep writing to let any of you reading this know what is going on.  Now that I am “caught up” I should be able to do a better job of keeping you current with how treatment is going.  Thank you again for all your well-wishes and prayers.  They mean everything to me!