Hawaiian Punch

Adriamycin (Hawaiian Punch)

This week, I started the first treatment in my second 12-week cycle of chemo. I will have one infusion every three weeks of 3 drugs: Adriamycin, Cytoxan, and Keytruda. The blood tests I have to do for this round are done on the Wednesday before my infusion, so they can be sent away for testing and we can see the results by Friday. This Wednesday’s blood tests showed that my white blood cells and platelets were up, and my hemoglobin had gone from .6 to 9.7 since the blood transfusion, so they said to plan on treatment for Friday.

Glen and I visited a couple of cannabis dispensaries. When I walked into the first one, I was assigned a “bud tender” who had very strong opinions of what he thought would help me. Glen wasn’t able to come in with me because he didn’t have a card of his own. I just kept nodding my head, but eventually told him I needed to think about it and left. We decided to go to a second store to see what they could teach us. At this store, Glen was able to sit with me in the foyer while we talked with an employee about what they had and what might help. Armed with this knowledge, I went into the store and Glen sat in the car. I got a few items in different forms, including a patch, gummies, and liquid drops.

Thursday morning, I started my day like many of you with prayer and asked how I could hear the voice of the Lord. I felt impressed to make bread to take into the medical staff to thank them for all they've been doing to help me. During treatments it can be easy to focus on what hasn't gone right, but I decided to focus on all of the good that is happening. So, with the help of Daniel, Ryan, and Glen, I was able to make bread to take into the office on Thursday. When we gave Dr. Curley his loaf he said, “how did you know I have been craving grilled cheese sandwiches?” He took a picture immediately and sent it to his wife with the caption, “look what we got.” :)

   

My sister Kimberly flew in Thursday night from Texas and has been such a wonderful help. Friday, she finished homework with Hannah and went on a bike ride with her. I went in for my infusion and to meet with Dr. Curley from about noon to 5 p.m. while Kimberly went swimming with the kids and then came to pick me up at the end of the appointment. She's also been helping Paul take inventory of what he has and what we still need to gather for his mission. She is planning to take him shopping this week to get what he needs.

Some of the things we talked about with Dr. Curley were my blood results, uses of CBD oil, what we can expect from the new treatment, side effects. He said that the MRI results were inconclusive because the contrast dye didn’t work properly, so we will have to redo that this week. I need to call and schedule that this week, so regardless of the results we will not change treatment. It will just give us a good baseline of the results of round one. My next appointment with Dr. Curley is in six weeks (before my 3rd AC treatment). The best news was that my white blood cell counts were high enough that I did not need to receive the Neulasta injection. The Neulasta is similar to the Zarxio shots I have been getting to stimulate the bone marrow to produce more white blood cells. Neulasta must be used when there are longer periods between treatments because it lasts for 10 days, Zarxio lasted only 24 hours.

Friday I received 3 drugs. Keytruda, which I have already been getting every 3 weeks up until now; Cytoxan, which is a drip that runs for 30 minutes; and Adriamycin, which comes in a syringe and must be pushed in slowly by a nurse ... this drug is often referred to as the “red devil”. I thought that name was terrible and that it was high time for a new name, so I decided to call it “Hawaiian Punch” and I am going to think about basking the sun on the sands of Hawaii with all my family and friends, while I drink it from a chilled martini glass with a cute umbrella on the side ;) it took about 15 minutes to go in. 

The Adriamycin is considered a “vesicant,” which is a chemical that can cause extensive tissue damage and blistering if it escapes from the vein so it must be administered manually by a nurse that has been trained. Nowadays this damage rarely happens when using a port. I had read that if I sucked on something cold, like ice, while it is given it helps to prevent mouth sores. I brought ice chips to suck on but I completely forgot to use them because everything was so new. I was watching it go in and was talking with Yvette asking her questions about it and was completely distracted. Oh well, maybe next time. The “Hawaiian Punch” has already turned my Urine red before I even left the clinic. What a day on the beach.

The best part of my treatment was coming home to a warm, delicious meal from our sweet friend who attends church with us. We had planned to have a movie night with the kids, with popcorn and treats. I made it through the first 20 minutes before Glen carried me up to bed.

I have my normal insomnia for a few days, from the steroids given in the premeds. The doctor said that most people experience the worst of the drugs on days 2-4, but sometimes it can come in waves. We are now 2 days in and hoping I am at the worst of it and things will start improving. So far, the CBD has maybe helped to curb some nausea but I am still feeling pretty sick and have spent most of the weekend in bed. I am wearing a patch right now, which should help for 72 hours.

My friend Meredith

I met Meredith about two months ago when she sat beside me during a chemo infusion and we started chatting. We were about the same age, the youngest in the infusion room most days, and we became fast friends and exchanged phone numbers. She had metastatic breast cancer, stage IV, and had come in to start Taxol treatments after oral chemo had no longer proven effective. 

Since I had already had four or five treatments, she asked me about my experience with it and what she might expect. We both were working with Dr. Curley, who only worked at this clinic on Fridays so we almost always looked for each other on Fridays during appointments. She and I would talk about our families and treatments and laugh about our side effects so that we wouldn’t cry. The nurses used to joke that we needed to be separated because we were always causing trouble with low blood counts or adverse reactions. 

Meredith went in for a blood transfusion last week but never went home. Her oxygen levels were so low that she was taken from the infusion center to the hospital and she was receiving treatments from there for two blood clots in her lungs. I had been texting with her over the weekend to check on her progress but on Thursday, when I went in for some blood tests to prepare for my chemo on Friday, I found out that Meredith died Wednesday night. I was so caught off guard that I just began to cry and cry until my mask needed to be wrung out.  How could that happen so suddenly? How was her husband Mike, and their children? Questions have been running through my mind and I have had a hard time sleeping. 

Meredith and I never talked about death in any of our conversations but I wish I could have shared with her what I know about our eternal existence and what will happen to us when we die. Even with my tears and sadness, I have felt the mercy of a plan for our happiness, set in place by our loving Heavenly Father, that will allow Meredith to learn these truths after death, and live forever with her family if she chooses. Meredith was my example of courage. How I will miss our talks, dear friend. I can’t wait to see you again, with your full head of hair.

"Thanks to Him, each body will be restored to its proper and perfect frame. Thanks to Him, no condition is hopeless. Thanks to Him, brighter days are ahead, both here and hereafter. Real joy awaits each of us--on the other side of sorrow." (Jesus Christ — The Master Healer, President Russell M. Nelson)

My perfect oncologist

How thankful I am that my infusion was cancelled on Friday! This week has given my body a chance to catch its breath. I am feeling more energy and less side effects. I have also felt a gentle reminder that God is my perfect oncologist. He knows exactly what I need and how best to treat this cancer.

Saturday, Glen and I drove to an infusion center in Scottsdale to get a “type and screen” for my blood infusion. They took several samples of my blood through my port to verify my blood type and to test it for antibodies. Then they mixed bits of my blood with donations that would be given to me to see how it reacted and to make sure they would be a good match. The nurses kept my port accessed with the tube capped overnight so that I could return Sunday morning at 7:30am for the infusion. Glen dropped me off so that he could attend church meetings and be with the children, and a dear friend picked me up to bring me home. 

I had the sweetest nurses who waited on me for the next six hours while I “took in” two pints of blood. 🧛‍♀️ The nurses said that some people feel the results of the transfusion quickly but it normally takes 24–48 hours, which was the case for me. Right after the infusion, I had more color in my face and my eyes looked less sunken but I didn’t begin to feel more energy until this morning. I was able to walk this morning with a little more speed and go up the stairs without getting winded.

This morning, I drove to Anthem to get a bilateral breast MRI at an imaging center there. This was my first experience with an MRI and it was memorable! I laid on my stomach face down while I was tested with and without contrast, a dye injected through my veins to better detect the tumor. I was given ear plugs for all the noises the machine would make but they didn’t do a thing to block out all of the knocking, alarms, horn blowing, and jackhammering. I practiced lots of deep breathing to hold still for about a half hour. We will get the results in 2–3 days, hopefully before our appointment with Dr. Curley on Friday.

This one is for you

I've kept each of my tags from chemo treatments. They go up on my board Friday afternoons. Today, I got to put one up even though I didn't get Taxol. Dr. Curley said I had finished what I needed to. 12 down 4 to go!

Last Friday, I found myself crying and really dreading having to receive chemo. It was not easy to force myself to go. My brother-in-law sent me this beautiful scripture that gave me the courage to do it anyways. In 2 Nephi 22:2 the prophet Nephi is quoting Isaiah - “Behold, God is my salvation; I will trust, and not be afraid; "For the Lord Jehovah is my strength and my song; he also has become my salvation." I spent the time during my treatment reciting this scripture and thinking about all of the people I love. This one was for you. I wonder if that is what the Savior thought while He was suffering in the Garden of Gethsemane.

Today was supposed to be the last Taxol treatment of my first round of chemo. Unfortunately my blood counts did not allow for that. My white blood cell count was normal due to the Zarxio shots I had received Tuesday, Wednesday, and Thursday, but my red blood cell count (hemoglobin) was a 6 and platelets were at 69. Because my platelets count was less than 100, Dr Curley cancelled the chemo treatment and ordered a blood transfusion to help with my anemia (low red blood cells) which I will get this weekend. The transfusion is a 2-day process where I will go in on Saturday to get blood typed and screened and then Sunday I will have the transfusion which could take up to 6 hours because I will get two pints of blood. I should feel the results immediately and we are hopeful that it will help me to regain some energy. Thank you to those who have offered to donate their blood for the transfusion. Because the cost to donate directly from one person to another is exorbitant and very time consuming the infusion center recommended that people wanting to help just go and donate blood locally to replenish what I will be given.

I was able to catch Dr. Curley on my way out of the chemo room and mentioned that I had some family coming into town next week to help with my first cycle of AC. I asked him if he planned to postpone my Taxol to next week or skip a treatment. He decided to cancel my last Taxol treatment and move forward with AC next week. I also have an MRI scheduled for Tuesday morning to re-image the tumor after the first round of chemo. I have been experiencing a lot more side effects including swelling and weight gain from all the steroids, dry eyes and nose (leading to nose bleeds), and neuropathy in my hands. My taste buds are shot so I am not really getting a lot of satisfaction from eating, even food that I love. On the plus side I don’t need Zarxio shots this week, I get an extra week off before I start the next round of drugs and we should have a good idea of how the tumor is responding to the treatments when I meet with Dr Curley next Friday. We are so thankful my oldest sister Kimberly will be here Thursday from Texas to help for about a week.

Glen and I have spent the last couple of weeks researching the benefits and usage of medical marijuana and praying about if it was right for me to try and use. I applied for and received a card yesterday. We have talked with many cancer patients who have found relief from their nausea and exhaustion by using various forms of CDB, which include oils, tablets, edibles, and patches without all the side effects of the medications I am currently taking. We plan to visit a dispensary this weekend and gather some more information and items that may help with my next chemo appointment.

We had mixed emotions about Rebekah leaving for college Thursday morning. She drove up with two of her roommates and is now settled in her apartment in Rexburg. She has been such a blessing to have at home the last nine months, but we are so excited for her next adventure and know it is time for her to move forward. We will all miss our daughter and big sister dearly.

Trying to make beautiful music

I've been reading several books by Neal A. Maxwell, who was an apostle of the Church of Jesus Christ of Latter-day Saints for many years. He died in 2004 after an eight-year battle with leukemia. This time he referred to as his “pincushion period,” which I could identify with. :)

He shared this idea in one of his books: “Since this is a gospel of growth and life is a school of experience, God, as a loving Father, will stretch our souls at times.” Then he quoted Eric Hoffer as saying that the soul is like a violin string; it makes music only when it is stretched. “God will tutor us by trying us because He loves us, not because of indifference...this sort of divine design in our lives clearly requires the omniscience of God.” (All These Things Shall Give Thee Experience, page 29)

This has been one of the hardest weeks for me physically with nausea, extreme fatigue, nose bleeds and other side effects. My body is wearing down and certainly being “stretched,” but as I have prayed to be a teachable student, my faith in an all-knowing Father in Heaven has intensified and I have felt in greater proportion the love that motivated our Savior's infinite and excruciating sacrifice for each one of us.