Blessed respite

It's been so wonderful this past week and a half to not have to go in for radiation treatments each day! The top layer of skin that was damaged has been peeling since my last treatment but now the new skin is starting to heal and scab over. I am still very tired but feeling a little better each day and my bowels are almost back on track. I usually get up to walk and shower, and then I need to lie back down to take a nap to gear up for when the kids get home, dinner, and evening activities. I have successfully ruined most of Glen's extra t-shirts that I wear after I lube up with Vitamin E oil each morning and night. 😀 That is thick, messy stuff! 

We enjoyed participating in Ryan's senior thesis defense on Monday and he will have school prom this Saturday.

 
Our first two week's supply of Xeloda was shipped to us from a specialty pharmacy and we're set to begin that on May 10th. We're hoping that if all goes well, Dr. Curley might allow us to travel during the summer in between my blood draws each cycle. 

Hoping you are all well and feeling strengthened in your individual challenges!

Love, Di

Radiation complete!

Today was my last day of radiation!! I'm so excited to have this part of treatment complete but I have to admit I was really sad to say goodbye to the office staff and radiation technicians who've become my friends over the past six weeks. Jean, Dorothy, Kwaneija, Cheryl, Ana, and Lucia have been so kind to me and I will miss them. It's been more than a month since my last entry so let me give you a recap of what's happened during that time.

• After starting radiation, I was told to be very careful about irritating the skin that was being treated, including not using a washcloth or razor in the shower and keeping my left arm on my hip while I walked to prevent repetitive rubbing of my arm against the side of my chest. I called this "walking with attitude" but I got some pretty funny looks from people who thought I was posing for a picture while I was exercising. :) My skin seemed to hold up pretty well until the last two weeks when I started to get very itchy from dryness and my skin started to burn. It's now a dark reddish brown and quite leathery but Dr. Quiet is hopeful that in the next month, with a lot of Vitamin E oil, it will heal well. My fatigue also increased as radiation continued and it seems I'm always tired. The kids recently asked me if I could have any superpower, what would it be? I said "to have endless energy and never get tired!" I'll follow up with Dr. Quiet on May 12 to see how I'm recovering.
  
  
• We had a wonderful Spring Break March 15–19. Glen took a couple of days off so we could do some family activities like ice skating, and a day trip to San Tan Valley to see the Brown cousins and Courtney (niece) who was in town from Utah. We also played with friends, went to the lake for an afternoon with our neighbors, worked on puzzles and got to dog-sit Bailey, our friends' Goldendoodle!
  
  
   
  

  
  
  

  

• The following week, Ryan had his senior class trip to Williams, Arizona, and while he was there, he received his mission call! We had to patiently wait until he got home that weekend to find out that he will be serving in the Rancagua, Chile mission and will begin his missionary training at home on July 27. Other recent activities for the kids include church prom this weekend for Ryan, braces and basketball for Daniel, soccer playoffs for Kate, and Rebekah driving to Virginia for a summer internship with a wedding planner. It was glorious to have her here for the past week!
  
  
  
  
  
• I was grateful to receive my first COVID vaccine (Pfizer) on February 28 and had a sore arm for a few days but after I received my second vaccine on March 28, I was quite sick for almost a week. I've had diarrhea during this entire time and my oncologist thinks it could be a side effect of the vaccine, so I'm using several things that are helping to setting things down including a probiotic, kefir, and CBD oil.
  
  
• My sister Annette and her family were here for their Spring break the week of March 24–31. We got to celebrate Ben's 8th birthday while they were here and they were a huge help in getting me back on my feet after my second COVID vaccine.

 

• Easter week and General Conference were absolutely wonderful for us and seemed to come just exactly when we needed it most. We loved listening to our prophet's counsel and are already feeling the blessings as we "clear away the debris in our lives."
  
  
• I have continued to meet with my PT Karie as my skin and muscles have gotten tighter and stiffer with radiation. She's helping me regain my range of motion and, as of now, we're not seeing any signs of lymphedema. I will see her weekly for the next month and then determine if I can be discharged.
  
  
• Glen and I met with Dr. Curley, my oncologist, and he's decided to give me about three weeks to heal from radiation before I begin my oral chemo Xeloda, on May 10. I will meet with him after my first two weeks of treatment to see how I'm reacting and if we need to adjust dosages. He feels like as soon as I am strong enough, I can return to church and more normal activities sometime during the next month.

This week marks one year since I discovered my tumor. We are overcome with gratitude as we think of all of the service, prayers, and support we've been blessed with. This past year would have been very different without you all and we hope that you will feel our love and thanks for being a part of our fight against cancer. We love you very much!

Diana

Radiation and Physical Therapy

A sweet friend made me a "Blue Box" for tough days.

I have been attending physical therapy twice a week with a wonderful PT and Certified Lymphedema Therapist, Karie Rosenthal. She is in her 30s and is a cancer (Lymphoma) survivor herself. We meet for about an hour each time, and the time passes quickly as we swap stories about our experiences and she works to help me with my range of motion and to redirect my lymphatic fluid to prevent lymphedema. I have had some fluid buildup in my chest since the last surgical drain was removed and we are watching that closely to see if it will absorb into my body with more time. If it increases and begins to affect my radiation plan, it may need to be aspirated by the plastic surgeon.

My first week of radiation has gone smoothly. I'm in awe at the technology and machinery that are available for this kind of treatment. Typically, it only takes 10-15 minutes for the actual treatment but it takes about an hour and a half for drive time, undressing, and prepping for the radiation. I lay on a table on my back with my hands over my head, resting in arm holders, and I have to be in exactly the same position every day. I have water-proof stickers across my chest that mark where the laser beams have to line up so that the radiation hits exactly the spot they have designated in my plan. A lot of times, a metal wire is taped to my chest which monitors the dosage amount of the radiation and on days when my chest wall is being treated the technician uses something called a brass bolus, which is kind of like a chain mail vest that is taped all around my chest and which prevents the beams from penetrating too deep and hitting my organs in the area (heart & lungs). The table I lay on is automated and can be moved left and right and up and down remotely by the technicians. They step out of the room during the treatment but can monitor and move me into position using a camera and audio from another room. The radiation machine then moves up to the table. Something that looks like a solar panel comes down over the two side arms and then the whole thing rotates around my body. It is amazing! I have to keep my head turned to the right, away from the treatment area but I can see out of the corner of my eye the metal plates changing position in the machine according to my specified settings. The radiation beams are not visible to the eye but green laser lines shine from the ceiling to keep me positioned correctly.

After each treatment, I'mm supposed to cover the radiated area 6-7 times a day with a steroid cream and aloe vera gel to keep my skin hydrated and protected from burns. As a result, most of the time I feel like a slimy mess and I have alarms going off every couple of hours to remind me to lube up:) Once a week I meet with Dr. Quiet and she monitors the effects of the radiation to see if we need any other medications or are having complications. She said typically the skin does pretty well until about week 4 and then it starts to break down. I feel tired but as long as I can get a nap in during the day or go to bed early, I have been able to keep up with the kids and their schedules. I am so grateful to feel well enough to be able to drive myself to appointments and take care of our family needs for the most part. 

I am scheduled to have radiation for the next five weeks, with my last treatment on Tuesday April 13, if all goes well. After that, we will return to meeting with my medical oncologist Dr. Curley for oral chemo. Next week, the kids have spring break so we hope to sleep in and have some fun day activities following radiation. 👍

All our love and gratitude for your continued prayers!

Do miracles cease?

It's been an emotional week for me and Glen. After receiving news that we would need to do additional chemo following radiation, we felt like the light at the end of our tunnel was no longer visible, that the finish line had being pushed too far into another year that it was out of reach. At the same time, one of our dear friends was diagnosed with a type of lymphoma cancer and we were mourning with them. We continued to move forward with work, family, and church responsibilities. We watched soccer and basketball games, helped Ryan ask a girl to prom, and celebrated Daniels's 13th birthday but our hearts were depressed and sorrowful during the quiet moments of the day. 

We were reminded by this picture of Hannah's to keep praying, to seek God's direction through scripture, and we felt comfort from priesthood blessings. In an effort to support me, Glen tried to arrange a getaway for me to have a few days to ponder and connect with God, but when he asked me what I needed to press on, I told him that what I really needed was to be in the temple. Unfortunately, our Phoenix temple had been closed due to COVID since last March and was only recently reopened, on a limited basis, for small groups performing their own ordinances, such as marriage. 

Several more days passed as we continued to pray that my faith would be strengthened, and then a miracle happened for us. A friend of a friend reached out to us to let us know that they were attending the temple with their daughter who was preparing to be married. Their family party was small, much less than what was allowed by COVID restrictions, and knowing our circumstances, they asked us if we wanted to join them. I was overcome with tears and I dropped to my knees to thank my Father in Heaven for hearing our plea and making it possible to succor me in precisely the way that I needed. This experience helped me to see our situation with an eternal perspective and be reminded of the glorious promised blessings that await those who faithfully endure the challenges of this mortal probation. Modern-day miracles continue! (Moroni 7:35-38) Our faith in Jesus Christ and in his atoning power to save us has been fortified and that has made all the difference.

Radiation was delayed one day because my plan was not quite ready. I will go in on March 2 for my verification day and first treatment will be March 3.

Radiation ahead followed by oral chemo

On February 9, we met with Dr. Coral Quiet, my radiation oncologist. She was happy with how I was healing and my range of motion after surgery. She said that as soon as my last drain came out and my expander was filled to where we wanted it, we could begin radiation treatments. She set up a CT scan for the February 16 to outline my anatomy and begin a mapping process of all the areas they will hit with radiation and for how long. She wants to do six weeks of treatments, everyday M–F. This is just one more week that she would have done if the breast surgeon had found no cancer in my breast and lymph node. 

She plans to radiate the lymph node area under my arm, the chest wall where any breast tissue may remain, and the lymph nodes along my sternum. Side effects from radiation will include brittle ribs, fatigue, and burning/irritation/peeling of the skin. I will also have a possible risk of short-term or permanent lymphedema, which is swelling of my arm from a lymphatic system blockage. When we asked what we could do to prepare for radiation she encouraged me to keep walking so that my skin would be well oxygenated and to continue to eat food high in minerals and vitamins. Once I start treatment, I will start applying a steroid cream along with an aloe vera gel to heal damage to my skin.

I have continued to struggle to get good sleep the past few weeks because the drains and expander are very uncomfortable and require me to stay elevated on my back but things are slowly feeling better and I try to rest as often as I can during the day. Each day, I do some light physical therapy exercises to help regain my range of motion. I follow up with my PT on February 26 to see how everything is looking.

On February 16, Dr. Matatov’s medical assistant removed my last drain. I was so happy to be “untethered” and to be able to wear something other than a button-up shirt with pockets to hold my bulbs. :) That afternoon I had my CT scan and we set up an appointment for verification on March 1. This will basically be a “dress rehearsal” for my first treatment the next day to make sure all of my markings line up and Dr. Quiet is happy with the radiation mapping that has been outlined by the technicians.

Today, February 19, I had an appointment with my oncologist to discuss the biopsy results of my surgery and I was also scheduled to get another Keytruda infusion. I was disheartened when Dr. Curley said he felt like we needed to change my treatment plan to include more chemotherapy. Because the pathology still showed cancer in my sentinel lymph node and three areas in my breast (1.8cm, 2cm, 0.8cm in size), I only had a partial response to the chemotherapy. Dr. Curley is recommending that following radiation I begin an additional 6-8 cycles (about 6 months) of an oral chemo called Xeloda. One cycle would consist of 4 pills every morning and every night for 14 days followed by 7 days off. Ideally he would like me to have 8, 3-week cycles but a minimum of 6 cycles depending on my reaction to the drug. The side effects of Xeloda are not typically as bad as the infusion drugs I got but often include diarrhea, mouth sores, fatigue, hand-foot syndrome (skin rash, swelling, pain and peeling of the palms of hands and soles of feet), low blood counts, and elevated bilirubin levels. I won't have any more Keytruda treatments since they're not giving us the results we had hoped for. Dr. Curley feels that by adding this additional chemo I can decrease the percentages of cancer reoccurrence. 

Glen and I knew there was a chance I might need oral chemo after we got cancerous biopsy results from the mastectomy but I was not expecting six more months, so it's been a difficult pill to swallow, no pun intended. We will bravely carry on and trust “that God will deliver us, insomuch that he will speak peace to our souls, and grant unto us great faith, and ... cause us that we can hope for our deliverance in him.” (Alma 58:11) Embrace the Future with Faith - President Nelson

Post-surgery update

It has been about a week and a half since my surgery on the 28th, and I am healing and recovering well! We were pleasantly surprised that I was able to come home that evening with a lineup of prescribed medication, including pain killers, an antibiotic, an anti-inflammatory drug, and something for nerve pain. I feel like the pain has been manageable with limited narcotics and I'm so grateful I didn't experience any nausea or constipation from the meds. 

I certainly have felt the discomfort and pressure of the expander, which was placed after the mastectomy. It sits right against my sternum and ribs, and can cause a lot of pain at night when I'm lying down or trying to breathe deeply. Two drains were also placed to eliminate the blood and lymph fluid that build up in the removal areas, one under my armpit where the lymph nodes were taken out and one in my chest where the breast tissue was removed. These drains can cause some pain at the area where they're inserted and can be quite cumbersome in the shower and under clothing but we've figured out a pretty good system for our daily routines. :) 

I had a follow-up appointment last Wednesday with Dr. Matatov, our plastic surgeon, and the drain leading to my lymph nodes had slowed down enough that it was removed but I still have the second drain for another week or so, until the drainage is less than 30 ml in a 24-hour period. At that visit, he also deflated the expander of the air that it had when it was placed and he refilled it with a saline solution that would mimic the weight and size of my breast. He may fill a little more next week but overall, he was happy with how I am healing and did not see any signs of necrosis.

We received our pathology results from the breast surgeon, Dr. Moorthy, last week. While in surgery she did a frozen section biopsy of the sentinel lymph node, which tested positive for cancer so she had to remove additional lymph nodes in that area. They ended up removing four lymph nodes in total, all that I had in the affected area. The three additional nodes did not contain any other indications of cancer, thankfully. The biopsy of the breast tissue also had evidence of cancer, so it was not the complete pathologic response that we were hoping for with our oncologist, but the surgeon was able to remove all of the cancer there and got clear margins. This means that everywhere that she cut the cancerous sections from the breast tissue it was free of cancer by at least 1-2 millimeters. We met with Dr. Moorthy on Friday and she said that because of the cancer that was still present, we would definitely need to do radiation, which we were planning on already, but it may not need to be more than we expected. We will meet with our radiation oncologist, Dr. Coral Quiet, on Tuesday and set up a treatment plan for when and where radiation will begin. We are ever grateful for the medical expertise of those doctors and nurses that we are working with and pray for their inspiration in my care.

It was a joy to feel well enough this past Friday to escort Ryan in with Glen for his senior night of basketball. They won their game against North Pointe Prep 64-31 and Ryan played a great game! We were cheering our hearts out with a bleacher full of fake fans 😂.

My sister returned home to Utah yesterday and she kept us well-fed, clean, and laughing for the week. Thank you sis and Childs family, for sharing your mom with us!

All our love, 

Di

Surgery update

This has been a full week! I was able to make it to all of my appointments on Monday and Tuesday. On Wednesday, Glen surprised me by taking work off so that he could help me get a few things done before surgery and come with me to my doctor’s appointment with Dr. Matatov. That was a highlight for me! We were grateful to have all of the kids, including Beka via FaceTime, together when I received a priesthood blessing that night. Afterward, we picked up my sister Sondra from the airport and have loved having her here. She has been a tremendous help already!

On Thursday, Glen dropped me off at the hospital at 11am for my scheduled surgery at 1pm. I spent the next few hours getting prepped and surgery started at 1:30pm. Glen returned home and worked until he got a call from Dr. Moorthy (the breast surgeon) after she had finished the mastectomy and node removal. She told him that things went well but that the frozen section biopsy on the sentinel node indicated some cancer, and that they needed to take out more nodes than expected. She removed them and they will be tested. She told Glen that I would need additional radiation on the nodes that remained but that no further surgery would be necessary. Dr. Matatov (the plastic surgeon) called Glen after he completed his portion of the surgery at around 5:45pm and said that things went well placing the expander and two drains — one coming from the lymph node area and one coming from the chest. He said that I was doing well enough that Glen could take me home that night.

I have been home resting and taking several medications, including an anti-inflammatory, antibiotic, and nerve pain reliever. For pain, I have had extra-strength Tylenol and Oxycodone as needed. Until now, the pain has been manageable, but I've felt a lot of discomfort from the expander pressing against my sternum. I felt well enough today to go out for a slow walk around the neighborhood. The doctors want me to keep moving to prevent blood clots and to keep my bowels working. We empty the two drains several times throughout the day. As soon as the blood and fluids are less than 30 milliliters a day, they can be removed by the doctor. I'll be doing some light exercises from home that were recommended by the physical therapist to regain my range of motion. I have a follow up appointment with Dr. Matatov on Wednesday and one with Dr. Moorthy on Friday, so hopefully we will have more information then.

We have felt your love, fasting, and prayers and thank God for such wonderful family and friends!

Love, 

Diana and Glen