Updates on chemo and surgery

Chemo update: 

We found out that insurance won't be ready until next week, so it looks we won't start chemo until next Friday.

From Diana:

I am now a new owner of a power port! Everything with the surgery went great yesterday. They used a vein in my neck to feed the line from the port into my superior vena cava. The port sits under the skin so that I can shower and swim without infection. When I get chemo, they will inject the needle through my skin into the port and then the medication will go directly into the vena cava.

I don't know how I would do this without you all. Thank you for all your your loving support. Rebekah just returned from Utah and Idaho to see some friends and mission companions. She was able to see a few of you along the way. When she got home, she said the best thing about her trip was to hear our family praying for me and be strengthened by your love and faith. I am convinced God knew I could only handle cancer because I have the best support team in the world!

From Glen:

On Wednesday, Diana went in for an echocardiogram, followed by blood tests to make sure she is healthy enough to proceed with all the treatments they want to administer. She did well with both and everything is looking good.

Yesterday, we were a little anxious about the port surgery as this is all new. We were able to say a prayer together and I think that helped calm Diana's nerves. Dr. Jordan Glenn, the surgeon, is from our ward. 

We had to do temp checks on the way in, but I was able to stay in the waiting room while Diana got her IV started. The nurse accidentally pushed the needle on her first attempt all the way through the vein and had to make a second attempt. Diana was feeling pretty nervous already so this didn’t help. On her second attempt, all went well and I was able to come to the pre-op area and to sit with her for a few minutes. I wasn’t doing a very good job of helping her relax and her nervousness built. I grabbed her hand and sat on the bed by her and we said a prayer together. After that, Dr. Glenn talked with her, which gave her the reassurance that she needed. I left to another waiting room and Diana was wheeled back to surgery. She said knowing that Jordan was doing the surgery, and seeing him as she went into the operating room was just what she needed. Jordan came and talked with me about an hour later saying that everything went great — the placement of the port and everything with the surgery went very well. 

I was in the waiting room for another hour or so while Diana got an ultrasound to make sure everything was in the right place and to get some additional rest. Di said it was the best rest she's had in a long time.

I was able to take Diana home after that and get her settled in. She had not eaten since dinner Wednesday night, but was told to take things slow. Some people experience nausea after anesthesia, but thankfully Diana had none and was able to eat some eggs and toast. That was one of her greatest fears, so another prayer answered. Diana was able to rest, and later she spent some time with the kids. Amanda Glenn, the surgeon’s wife, brought us dinner, which was delicious. How often do you get surgery and dinner from the same family? 😊

 Thank you all for the prayers, we feel them supporting us.

This week: COVID test, echocardiogram, port, chemo

Today, I had to go to the hospital to get tested for COVID-19 so that I could get the port put in on Thursday. That was an adventure. The test took all of 5 minutes, but the running around the hospital and waiting took almost 2 hours. It is done, though, and now we wait for the results.

I spent the rest of the day scheduling tests and figuring out financials with insurance. Wednesday at 7:30 a.m., I have an echocardiogram at HonorHealth Deer Valley Medical Center in Phoenix, followed by a bunch of blood work. Thursday morning, the port will be put in by Dr. Glenn at Abrazo Arrowhead Hospital in Glendale. 

Hoping that everything gets approved by insurance in a timely manner so that we can keep our appointment for chemo this Friday at 9:45 a.m. at the Virginia G. Piper Clinic in Scottsdale.

Feeling grateful for so much support from our amazing family and friends.

My hero

Today is Memorial Day, the day my Dad died seven years ago. I have thought a lot about him the past few weeks and have often felt his presence near.

Dad died of a heart attack but I can remember when he was diagnosed with prostate cancer in 2005, shortly after he and Mom returned from their mission in England. I have wondered what he felt at that time. I can’t remember much about what he endured during that experience because we had just moved to North Carolina. 

My parents purchased our home in American Fork since they had sold their home in Oregon before leaving on their mission. I am not sure it was the ideal home or location for them, but I think they saw it as an opportunity to help us and they were not ready to start house shopping. 

I remember being at that home in American Fork when I came back to see him. I believe it was in October for his birthday and all of the 10 kids wanted to surprise him with a visit. I was pregnant with Kate and my Dad had already undergone radiation and therapies of several kinds. He was completely depleted and struggling with some of the side effects of those treatments. My sister Kim was there, and one night he got up to go to the bathroom and fell in the hallway. Kim was trying to find a way to help pick him up. My big, strong Dad was slouched in the corner helpless. I had never seen him like that. I wish I had been there for him and known how to help and learned what he did to get through cancer. 

My friend reminded me that sometimes “rock-bottom will teach you lessons mountain-tops never could." Today, I am grateful for my Dad who had the faith to walk through some difficult rock-bottoms so he could feel the blessings that wait for us on the other side. I love you, Daddy. Thanks for being my hero and staying beside me now when I really need you.

Visit with oncologist & treatment plan

Thanks for your patience in getting this update. Our appointment yesterday went for over three hours and we felt pretty overwhelmed by the time we got home, and the kids needed us.

We talked with the oncologist for about 45 minutes, then with a patient navigator and a nurse navigator discussing all the ramifications of the treatment plan that the doctor suggested. Dr. Curley wants to begin chemotherapy next Friday (May 29th) and it will continue for about six months. Before then, I will need to get a port put in, through which the chemotherapy will be administered. The port is put in just under the skin and will require a minor outpatient surgery to complete. We are trying to schedule this for Wednesday or Thursday. I will also need to get an echocardiogram done because some of the meds can have side effects on the heart, and I will need to do a ton of bloodwork. Because Monday is a holiday I will need to get everything done between Tuesday and Thursday.

Dr. Curley said because I have triple-negative breast cancer with a tumor that is greater than two centimeters (mine is over six cm) he recommends doing six months of chemotherapy first without any breaks, followed by surgery four weeks after completing chemo and then radiation after that. The type of breast cancer I have is inherently more aggressive, cells divide more haphazardly and more erratically. As the cells divide quickly, they open up their DNA and expose themselves to the chemotherapy, which is why he wants to be very aggressive with the treatment. He wants to hit the cancer whenever it makes itself vulnerable. Dr. Curley’s goal is to completely eradicate all cancer cells by the end of my six-month chemo. His treatment plan includes:

First 12 weeks:

• Carboplatin (every 3 weeks)
• Taxol (every week)
• Pembrolizumab (every 3 weeks)

Second 12-week cycle:

• Doxorubicin (every 3 weeks)
• Cytoxan (every 3 weeks)
• Pembrolizumab (every 3 weeks)

There will be a four-week break and then we will do surgery of some kind. Depending on how well I respond to the chemotherapy, I may be a candidate for a lumpectomy vs a mastectomy, but we will have to discuss later. Genetic testing will also be a factor in looking at the surgical options. If my genetic tests back with BRCA 1 or 2 genes the surgeon would probably recommend a mastectomy to prevent reoccurrence.

Pembrolizumab is a new drug available since the end of February this year. It is an immunotherapy drug that stimulates the immune system to help fight the cancer by “decloaking” the cancer cells and making them visible to the body's own immune system so it can fight them. Dr. Curley is the first one in his group using this drug since a study and drug were released in February, which show really positive results in early triple-negative breast cancer patients. He has one other patient who started with the immunotherapy several months ago and is doing very well with it. I will continue with the Pembrolizumab for a few cycles after surgery as well and some radiation treatments that we are still learning about.

We spent a lot of our time talking about side effects from the medication with David, the nurse navigator. I will lose all my hair probably within 2-3 weeks of the start of chemotherapy and it won’t begin to grow back until after surgery. They made us aware of boutiques where I can get a wig, but for now I don’t plan on using one due to the temperatures of the summer. Wigs can be very hot, so I anticipate maybe just wearing a cap of some kind or scarf after I have to shave my head. Other side effects will be fatigue and nausea, and I will need to watch for signs of neuropathy and anemia, which may require a blood transfusion. We talked with the kids this morning about beginning chemotherapy next week and we are still trying to assess the needs of our family. When I asked the doctor about when he typically saw the greatest need for help from family and friends, he said that it all depends on how I react but certain it would be immediately after surgery.

I will need to be careful about the number of people coming in and out of the home as my immune system will be compromised. While I am receiving the chemo treatments at the clinic, I will not be allowed to have anyone with me because of COVID-19. In the past, they have allowed one person to go with the patient and hopefully that will change in the next few months.

If, after reading this update, you feel like we did after our marathon appointment and want to clarify or ask anything, please feel free to comment on the blog and we can try to respond as we are able.

We love you and expect these next few weeks and months to be very challenging. If you would please keep us in your prayers, we know that will make all the difference.

Some good news

We just got the most wonderful news from Dr. Cox. The PET scan is clear except for known disease!! The cancer has not spread beyond the breast and lymph node that were biopsied. This was a major concern so we are feeling very very blessed. Thank you so much for your fasting and prayers. We will talk with the oncologist tomorrow and now we can start focusing on treatments and recovery.

–Di

PET scan today

Home from PET scan. Diana is feeling good, a lot better than the biopsies. Hoping to have PET scan results by Friday when we meet with Dr. Curley, the oncologist.

–Glen

Update on appointments, biopsy info

We ended up cancelling our afternoon appointment with Dr. Cox today after texting with her in the morning about additional test results. She suggested we meet with the oncologist before we discuss surgery options. She shared information from the biopsy about three hormone receptors ER (estrogen receptor), PR (progesterone receptor and HER2 (human epidermal growth factor receptor 2), which all came back negative (typically called triple negative breast cancer). This means that growth of the type of cancer I have is NOT stimulated by estrogen, progesterone, or HER2. If any of them had been positive then they would have been able to give me a receptor blocker to slow down the growth of the tumor. Since this is not an option the oncologist will be looking at Chemo and/or Radiation as options for treatment to slow the growth of the cancer.

Dr. Cox was very frank in sharing with me that in almost all cases of triple negative breast cancer requires chemotherapy before surgery, which is why she thought it best that I meet with the oncologist first.

When I asked her if the triple negative was good or bad news she said: “To be honest I would prefer that it was estrogen and progesterone positive. That way we have more treatment options. Triple negative can be harder to treat and almost always requires chemotherapy, so I wouldn’t say it’s 'good news' but it's not necessarily bad news in terms of being untreatable.”

I will have the PET scan tomorrow (Wednesday). The results from that will be important in establishing what stage level I am in for cancer and will help determine a treatment plan for fighting the cancer. I told some of you earlier that the grade of the tumors biopsied were grade 3 out of 3. Grade makes reference to how mutated or changed from the original cell it has become — 3 being the most changed on the scale. This also indicates how aggressive the cancer is. The grade of the tumor is different than the stage of cancer I am in.

In preparation for the PET scan, I have been on a high-protein, no-carb, no-sugar diet today drinking lots and lots of fluids. No food six hours before the test. The scan should last about 2 hours. I will receive an injection of a glucose solution combined with radioactive tracers and then I will wait for an hour for that to spread throughout my body. The scan will then take place inside a tube similar to an MRI and can take anywhere from 30 minutes to an hour. It will check all of my tissue, bones, and organs for any other signs of cancer.

We are being strengthened by all your fasting and prayers!

More on hormone receptors if you are curious.

This week's doctors appointments

Wanted to provide an update on where things are with Diana. She is continuing to heal from the biopsies, but is very sore. She is only taking Tylenol at night going forward, and I am trying to make sure she is taking it easy.

We were able to select an oncologist, Dr. Brendan Curley, who has worked regularly with the breast surgeon, Dr. Kimberli Cox, who is highly recommended by a couple of people in our ward. We are meeting Tuesday with Dr. Cox to discuss the complete biopsy results and have a physical exam.

We also just found out we were approved by our insurance for the PET scan that will happen Wednesday morning. The PET scan will tell if the cancer has spread beyond the lymph nodes. It will take 3-4 business days before we get those results. We then will be meeting with Dr. Curley on Friday. He will discuss treatment options with us, but will need the PET scan results before he can give us the full picture (more waiting).

We feel so blessed that we were approved for the scan, and that we have been able to meet with doctors so quickly (many favors have been called in on our behalf). We are also so grateful for everyone fasting and praying for us. God really is watching over us, he will get us through this, with a lot of help from our wonderful families and friends.

For those interested, a positron emission tomography (PET) scan is an imaging test that helps reveal how your tissues and organs are functioning. A PET scan uses a radioactive drug (tracer) to show this activity. This scan can sometimes detect disease before it shows up on other imaging tests.

–Glen

Family fast

Dear family,

Thank you so much for fasting with us today. The words to this hymn have been running through my mind all day:

"When dark clouds of trouble hang o’er us
And threaten our peace to destroy,
There is hope smiling brightly before us,
And we know that deliv’rance is nigh.
We doubt not the Lord nor his goodness.
We’ve proved him in days that are past..."

Our Heavenly Father has never abandoned us and we will trust in that as our days become harder. Please share any thoughts and impressions you have had today that can strengthen our faith and courage. We love you so much and have been praying today especially for our children and any fears they may be experiencing. 

Love, 

Di

Update on biopsies

Dear family,

We got preliminary test results last night but are still waiting on some additional details. All four biopsies are cancerous. We had a chance to talk with a breast surgeon, Dr Cox, who recommended that our next steps would be to get a PET scan and select an oncologist. 

Because the cancer is in the lymph nodes the PET scan will check all other tissues, bones and organs to see if the cancer has spread beyond the lymph nodes and breast. Dr Cox hopes to move quickly as the cancer seems to be fast growing. The oncologist will help us to determine if we will need to do chemotherapy prior to surgery to shrink the masses or after surgery. 

We talked with the kids this morning and they are a bit emotional but we feel united in faith. We are so grateful for your love and support and know this would be so much harder without you! We will continue to share details as we get them. 

I love you, 

Di

From Glen

This is Glen. The doctor just came and said she did well. They should have results next week and we will know more about what is going on. They are doing another mammogram which they said is standard when doing the biopsy. Needs lots of rest and relaxation in the mean time.

Prayers please

We wanted to ask for your prayers on our behalf. I will be going in tomorrow morning for several biopsies on my left breast to get some more information about some lumps that I detected about 3 weeks ago. It may be another week before we get the results but we will keep you posted. 

We told the kids about me going in tomorrow and we just had the sweetest experience. Glen gave me a blessing and then Paul gave his very first blessing to Glen. It was absolutely beautiful and I couldn’t keep the tears back. We know God is with us.