All You Have to Do is Ask

"The apostles said to the Lord, "Increase our faith!" - Luke 17:5

Just a quick update on yesterday. I will give a more thorough update later today. We received a phone call yesterday morning that Mrs. Barbara was given an appointment with the MD Anderson Center for Targeted Therapy, but not until Monday at 12:30pm. He said there a many people waiting to get squeezed in. The gentleman we spoke to emailed Dr. Ramirez directly requesting him to send a direct email to the trial physicians requesting a sooner appointment for her, as sometimes that speeds things along. We also sent a message on our end through her patient portal. In addition, we traveled back to the Mays Clinic, where Dr. Ramirez is located, and asked his staff if the request could be sent on her behalf (trying to hit it from all angles). The nurse came out and spoke to us and told us she used to be a nurse under the trial doctor and she would email him directly since Dr. Ramirez was not in the office today. What a blessing!! While eating lunch we received a phone call that her appointment had been moved up to THIS Thursday at noon! In addition, we received a copy of her labwork and everything looks great. This is good news because some are not candidates for trials because their body or immune system isn't strong enough.

Thank you for all your continued prayers and words of encouragement! We will update again after meeting with the clinical trials team. Prayers there are trials available to her that they think will be helpful.

Heavenly Father, we are putting our trust in You today. You know the longings of our hearts. Calm our anxieties with your Peace and wrap your loving arms around Mrs. Barbara today. Help keep our focus on You today, and no matter what these very brilliant doctors say, to remember that you are the best physician. In Jesus Name I pray. Amen.

Hurry Up and Wait

"God called the light Day, and the darkness, he called Night. And there was evening and there was morning, the first day." - Genesis 1:5

The first much hope put in this appointment. The wait for something amazing. hasn't been revealed just yet. So, we find ourselves still waiting. Which is fine. What speaks to me in the verse above is...the first day is simple. It existed...and we know so much more comes after it. You know what God made right after Day and Night? HEAVEN. And that is well worth waiting for!

There was quite a bit of waiting today. MD Anderson is a VERY big place, but a beautiful place, and one where being a cancer patient isn't so rare. There are people everywhere dressed comfortably, wearing head coverings over their nearly bald heads or being pushed in wheelchairs. There are volunteers who check on you, and each of them have been patients here before. We waited on the 6th floor for 3 hours after our scheduled time to see the doctor to actually have a conference with him. People were very kind and helpful, but the waiting was exhausting. It is hard to plan for anything when you're waiting. If I go to the bathroom or eat lunch, will I miss when they are ready for us?? Also, each area at MD Anderson is very specialized. They ordered some basic bloodwork for Mrs. Barbara to give. However, because she has a chemoport, she had to go to the 8th floor to have her port accessed by the Infusion Therapy specialists, then to the 2nd floor to get the blood drawn by Hematology, then back to the 8th floor to have the needle removed by the Infusion nurse. Whew! On our up/down journey though, we saw a beautiful rooftop garden on that 8th floor. I had talked about how nice it was all afternoon, then finally saw it was appropriately named "Barbara's Garden." A little blessing when we needed it most. :)  It was just the fuel we needed to wait an hour for the shuttle back to the hotel and the 45 minute ride through traffic to go 3 miles.

So, what everyone has been waiting for. The consult with the doctor. He agrees with all other doctors so far, that Mrs. Barbara's cancer is very rare and because it still grew during the firstline treatment it is considered "resistant." We asked about several treatment options including chemo drugs, surgery, radiation, etc. and most of those options she is not a candidate for as a part of standard treatment, either because of her bowel resection surgery increasing risks or because those treatments are not proven to be helpful for ovarian carcinosarcoma. He gives chemotherapy a 10-15% chance of working with her type of cancer. He feels that considering investigational trials may give her the best chance at extending her survival (which, in his opinion, could be 6-9 months with NO treatment). Investigational (clinical) trials have the opportunity to allow her access to some cutting edge methods to target the therapy she may undergo. This doctor thinks it would be rare that a person would not fit into any clinical trials, so he made a referral to the Investigational Clinic, and we find ourselves waiting again for a next appointment. As of right now, we have nothing scheduled for Wednesday...and are not officially under anyone's care. Sort of in a limbo. I have to admit this is frustrating. I am not even the patient, but feel abandoned and lonely! Then, I look at Mrs. Barbara, and she is OK and focused on the next step. She is a survivor. On this first day, she has moved from Day to Night, and I realize that I have been walking in "Barbara's Garden" all day. She is my blessing, and I find strength and encouragement in her presence.

Lord, I know you're all over this, and that there is blessing in the waiting. Help me to slow down and be in the moments. Help me to trust that Your Will is so much greater than mine. I pray that each person we encounter tomorrow will see Your light and love working through Mrs. Barbara as she survives this cancer in her body, and with all my heart, continue to hope for a miracle that only You can provide. In Jesus Holy name I pray. Amen.

Getting Ready...We've Arrived in Houston

"Now then, you and all these people, get ready to cross the Jordan River into the land I am about to give to them..." -Joshua 1:2

In just one short week, there has been alot of "getting ready" for this trip. I read a devotional tonight and it really spoke to me because the "getting ready" is so much more than the obvious. We don't know what is going to happen this week. But we are filled with a purpose and a hope that something AMAZING will happen. Amazing may not look like what we expect, but we know it's coming.

Everyone made it here safely today! Houston is a much bigger city than Nashville, and the roads are quite tricky to say the least. However, we managed to avoid any accidents or major vehicle damage after turning the wrong way down a street, running a red light, missing a couple exits, ramping a curb and bottoming out on a median (We all 3 had a chance to drive and we all contributed to the above mentioned mishaps)  :)  After Mrs. Barbara and Coach picked me up at the airport, we ended the driving fiasco at a nice little Mexican restaurant that was favored by the locals. It was busy, the food was great, and the conversation even better.

Conversation that was real and RAW. Talking about cancer and treatment and your wishes and stepping into the unknown is difficult. But it has to be done. I applaud Mrs. Barbara for taking that difficult step. I don't even know what I want to order for dinner, and she is so confident in so many decisions. We talked about how difficult it has been to lose her hair, eyebrows and eyelashes (may seem silly to some, but I have found each person I've known with cancer has something "silly" that someone else doesn't get, but it's still real to them). We talked about how she has done everything she can to raise her children, that she just wants to play with her grandkids, and how that could be made possible when they live in several different states. We cried, talked some serious stuff, and laughed while we ate at our wobbly table propped up with paper napkins in a cozy Mexican restaurant in a very tiny section of this big busy city.

And in addition to the blessing of making it to the hotel in one piece, I met a tremendously wonderful woman on the flight here today. I believe God sat her next to me and gave her a nudge to talk to this girl who very clearly didn't want to talk to anyone (I sat close to the window, had my earbuds in while I fiercely took notes for tomorrow's doctor visit. I had NO intention of talking to anyone on the flight today). She had noticed the "MD Anderson" on the top of my paper and very kindly tapped me and apologized for being nosy and asked if I was a patient or visiting someone as she knew several people that worked there. I explained the story, and and we had a fantastic conversation the rest of the flight. She's a mom of me. Her name is Jenny, and as we exchanged cell numbers, the last 4 digits of her number are the exact same as mine! All little coincidences, but how cool! I smiled the whole way out of the airport!

So, here were are in Houston, ready for what the Lord has for us this week. Thank you all for your kind words and comments. Mrs. Barbara reads them all and is blessed by every one!

[From tonight's devotional by Glennis Whitwer]

"Joshua told the people, 'Consecrate yourselves, for tomorrow the LORD will do amazing things among you.'" -Joshua 3:5

Heavenly Father, Your plans for us are perfect. Help us to trust You more and get ready for what You have planned. And Lord, please give us patience as we wait on Your perfect timing. In Jesus' Name, Amen.

Blessings...and Southwest Airlines

"Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him." -James 1:12

I leave for Houston today, and Christian read the verse above to me this morning while we were in carline (Chris has been having the boys read the Bible Gateway Verse of the Day each morning on the way to school). What a beautiful verse that captures the very essence of being a cancer survivor. Mrs. Barbara is persevering daily and blessed because of it. The outpouring of love from family, friends, acquaintances, and even strangers has been so encouraging and uplifting. Here is one such example...

Before I fly out this afternoon, I wanted to give a big shout out to Southwest Airlines. Last week, Chris spoke with their Customer Relations department about flights to Houston. He explained the situation and since we were less than a week out, flight prices were pretty expensive for the 3 of us to fly. The very kind agent gave Chris a phenomenal deal on the tickets and was very compassionate, but we needed to discuss with Mrs. Barbara and Coach first. It was decided that it might be a good idea to have their vehicle in Houston, in case her stay goes beyond just this week, so they decided to drive. I called the Southwest agent back on Friday to book my plane ticket, and she pulled up the earlier conversation. I explained that I understood if they could not honor the price they gave us because I would not even be traveling with the patient, but she quickly told me it would still NOT be a problem. I was given the ticket at a GREAT deal with a fare that can be changed anytime under the circumstances, but that wasn't the end of it. She was kind and supportive and compassionate and told me that she would keep our family in her prayers. Her kindness brought me to tears. Her gift in that moment was a much needed one...I was humbled and grateful. It is sad that these behaviors in our interactions with people, especially those in large companies, come as a shock to us. However, it is a testament to our hunger for compassion and understanding and to the fact that it does exist. God IS all over this journey,as we're seeing his love pour out of so many people that we know and don't know.

So, Heavenly Father, I pray that as we faithfully love You on this pilgrimage to healing, that others see Your love and light in us and that with Your strength, we can persevere this trial before us. Thank You for all of the blessings you have already given us. Your grace is amazing! In Jesus name I pray. Amen

Pilgrimage to Healing

We decided to start this blog to document the journey of my beloved mother-in-law, Mrs. Barbara, as she battles Stage 3 cancer. Our hope is that we can update our family and friends about her progress and new developments, while sharing the reality of the pilgrimage to healing…the beautiful parts, the hard and ugly parts, and the realization that God is with us in the joy and the pain. I heard on the radio last night that “Suffering is not the absence of God’s love because He is present in the pain.” How true!! God is, and has been, all over this journey, and we will continue to share that with you.

Mrs. Barbara and Coach (Charles) have decided to seek an additional opinion from MD Anderson in Houston, TX. She has an appointment there on Tuesday next week. I will be traveling with them, as well, and plan to keep everyone updated along the way.

For those who may not know what is going on, below I will describe the journey up to this point…

In October of 2013, Mrs. Barbara began having some abdominal pain and indigestion. She sought the care of her GI doctor, and when he found nothing on CT scan, he encouraged her to see an OB/GYN. She eventually followed up with an OB/GYN, and this doctor, after doing an ultrasound, also found nothing to explain the symptoms. Off and on for the next several months, she continued to have the symptoms. In August/September of 2014, the pain increased, became more regular, and she noticed a distention in her abdomen. Her work pants began to fit tighter and her pain was keeping her up at night. In early October, she called the GI doctor and he ordered a CT scan and ultrasound. After reading the report he immediately referred her to a gynecological-oncologist (gyn/onc). Her first appointment was on a Monday. This GYN/ONC had her in surgery that same Wednesday for a “debulking” surgery.

During her surgery they removed a volleyball sized tumor which had begun to attack her bowels. They removed her omentum (a fatty organ protecting the intestines), a significant amount of mesentery, the main tumor, 12-15inches of small intestine, 12inches of sigmoid colon, her right ovary and fallopian tube, and several smaller tumors in her abdomen. She remained in the hospital for 13 days. While there, she received a beautiful prayer shawl from church that she wrapped up in every day and beautiful cards and flowers, gifts and fruit arrangement. After returning home from the hospital she had a wonderful surprise visit from Nick and his family. A week later, she met with the GYN/ONC and pathology showed that she has Stage 3C carcinosarcoma. Pathology was unclear of whether the cancer originated from the ovary or was considered “primary peritoneal” so to make things easiest, it has been called Stage 3C ovarian carcinosarcoma. Both types of cancer are initially treated the same way by the same type of oncologist. A first-line treatment plan was suggested: 6 cycles of chemotherapy using carboplatin (a platinum drug) and taxol. This type of cancer, carcinosarcoma, is rare (Only 2% of ovarian cancer is carcinosarcoma) A few days later she had a chemoport placed in her chest that they would use to deliver the chemo through. They checked her blood levels including a test called CA-125 which is a tool to judge how much cancer/inflammation is in the body. Hers started at 78.8 after surgery. She had an orientation with the chemo nurse on 11/18/2014, where she told us everything we needed to know about the chemo treatments, showed us the chemo treatment room, and they took additional bloodwork. The chemo nurses have been amazing, graciously and compassionately answering our 5 million questions! That weekend, Chad surprised Mrs. Barbara with a week-long visit over Thanksgiving…just what she needed to begin her 1st chemo treatment on 12/1/2014!

Family and friends came together put together a chemo care package with a bag to bring to chemo appointments, photo album with old and new family photos, chemo care essentials, a notebook for tracking all her appointments, labs, insurance info, side effects, etc., a journal for writing, a devotional and pens, little stuffed animals and so many other helpful items (She still uses several of these!). Others sent her cards which were placed in her bag each week for her to read during chemo treatments (because family isn’t allowed in the infusion room with you). She LOVES reading the cards!

Chemo was TOUGH! On Cycle Day 1 she received both drugs and on Cycle Day 2 she received Neulasta, an injection to stimulate the bone marrow to produce white blood cells (WBCs). This helps keep her immune system stronger while the chemo does its job. On Cycle Days 8 and 15 she would receive just the Taxol. She would get her blood drawn every week to check her immune system (chemo can attack this and make a person not able to fight off infection or need blood/platelet transfusions). At the end of each cycle they check the CA-125 again. Cycle 1 went well as we learned how she responded to treatment and on what days she felt better and which days were the bad ones. We found a “pattern”. We spoke with nutritionists and read books on which foods helped what side effects. We went back and forth with insurance to get all the meds she needed covered. Nausea seemed to be her biggest battle. She was also battling the pain from the Neulasta injection (caused severe bone pain in the first week after getting it) and still recovering from the surgery, but overall each day would get better. On week 3, her hair began to thin significantly, and she was fitted for a free wig by the American Cancer Society. They are an AMAZING resource for cancer patients and their families! By the end of Cycle 1, we were getting the hang of things, her CA-125 had dropped to 39, and there was an amazing surprise visit from Chad and his family!

Cycle 2 began with the visit with Chad and Jacqueline’s families. But by the end of the week, the nausea was unbearable and vomiting started. Her GYN/ONC told her to go to the ER for fluids and nausea management, which helped tremendously. From that point on, we had a nausea management chart and kept all her meds constantly in her system to stay ahead of it. Compazine, Phenergan, and Reglan Oh My! She took them all! Her GYN/ONC also began giving her a new drug, Emend, during chemo treatments to help stay ahead of nausea. We also began to notice that the Decadron you are required to take before receiving chemo was causing her to have anxiety, so we began to look for a Palliative Care specialist to help us manage the side effects of treatment. By the end of Cycle 2 we felt we were managing things much better, her CA-125 was down to an amazing 9.7 (hallelujah!!), but Mrs. Barbara began to feel a butt bone pain and made sure she told her GYN/ONC at her Cycle 3 appointment.

Cycle 3 began on February 26th. After telling her GYN/ONC about the butt bone pain, she realized the doctor was concerned. She ordered a full body bone scan, which came back negative, so she then ordered a CT scan. She wanted to make sure that she was not missing something…an action we are very grateful for, as she was not going to do a CT until after completing 6 cycles. The CT revealed a new tumor growth in the area of the original large tumor. Her doctor informed her that she would be referring her to a specialist at the Vanderbilt Cancer Center. She completed her Cycle 3 treatment and we waited for the first appointment at Vanderbilt. During her 2 weeks off of chemo, she felt great and even made a trip down to Baton Rouge to visit family and surprise Maw Maw Dean for her birthday! It was a wonderful time spent with family and friends!

On March 2, we visited a medical oncologist in the Vanderbilt Cancer Center. She discussed how the Vanderbilt system works and then got us set up to see a GYN/ONC within Vanderbilt and also with the Palliative Care specialist. She also checked her CA-125, which was 10.9, which confirmed that the CA-125 test probably isnt a good tool for Mrs. Barbara as the number continued to drop while she had cancer growing in her body. On March 16, we met with the new GYN/ONC and she discussed more in detail about Mrs. Barbara’s cancer diagnosis. She explained how rare carcinosarcoma is and that once the first-line treatment fails, there isnt as much success with other chemotherapy drugs. She mentioned starting a chemo drug called, Doxil, but mentioned that it has about a 20% chance of working and some not so great side effects. We left that appointment with a reality check on the severity of Mrs. Barbara’s disease, but a strong desire to do more. By that evening, we started the process of a 2nd opinion.

Within 48 hours, we had 2 appointments, 1 to MD Anderson (MDA) in 1 week and 1 to Cancer Treatment Centers of America (CTCA) in Atlanta by the end of the month!! Praise God! We will keep the 2nd appointment at CTCA in case MDA isn’t a good fit for Mrs. Barbara, and if MDA works out, we will hold off on CTCA. Both institutions have been full of compassion and fantastic to work with. After some hours of research and joining a support group of others with carcinosarcoma, we are encouraged and inspired by the treatment options potentially available. Though just over 4 weeks with no chemo, Mrs. Barbara still is feeling the effects of the drugs. She has “chemo brain” (a foogy-headed feeling where you forget things and misinterpret things, so if you talk to her, give her grace here!), just lost her eyebrows and lashes this week, but is physically feeling much better. We hope this break has been what she needed to build up some strength to take on whatever is coming around the corner. Just over 5 months post-diagnosis…it has been a roller coaster of emotions, a journey taken day by day, a humbling experience, another witness to the loving/giving/supportive nature of others, and a clear reminder to let go and let GOD. Whatever has been needed along the way, He has clearly provided it, and because of that we are trusting in what He has planned going forward.

So, if you made it this far, we’d love for you to join us on this Pilgrimage to Healing!