However, I guess I am different now. I am closer to God. I am more aware of my spiritual blessings. I am more grateful for the children I have. I am more grateful for my husband. I have a deeper love for my little family and my extended family. I understand better the power of prayer and unity in prayer. I understand the atonement better than I have before. This is because I have ovarian cancer.
If feels so surreal. When I have heard of someone else with cancer I perceive it so much differently. Now that I am in it and I have to make hard choices and continue to live life, it's so much different than I imagined.
Doctors don't seem as panicked about getting things done as I feel they need to be. Too many options are given to me when I want to be told what to do. My children still need me to take care of them. My husband still needs extra love and attention. The house still gets dirty. Laundry still needs to be done. Life feels normal. Except it's not. I can't lift my kids. I can't jump on the trampoline or wrestle with the kids. I can't dig in the dirty and create dams and reservoirs because I am limited as I recover.
I am recovering until it's time for my next surgery. My oncologist was skeptical enough that he didn't stage my cancer when I had my right softball sized ovary removed at the end of August, but it came back as malignant Granulosa Cell Tumor.
Backing up a bit, I have been having symptoms since I had Sawyer. However they became worse and more progressive as the months and years went by. Right when Sawyer turned two we strongly felt impressed that it was time to try and get pregnant again. Because there was an important goal in mind I continually went into my ob/gyn every six months to say something wasn't right and to also mention I had yet to become pregnant. I think that the desire to become pregnant clouded the first year and the true goal of why I had been prompted to become pregnant. I think if I hadn't been trying to conceive I would not have had the same drive to get things taken care of. October 2014 and May 2015 I went to the doctor and I told him I had had enough, that I didn't want to be pregnant, but I wanted to be better. I felt very brushed off when yet again, he wanted to give me a pill to slap a band-aid on the problem instead of diagnosing what was causing the issues. I had enough.
I went to my endocrinologist in May and told him my frustrations. Obviously he wasn't the right doctor but he then pointed me to a fertility endocrinologist. This doctor is amazing. I feel that I owe him so much. He sat down and listened to everything I had to say. He then asked me question. Following our chat, he took me in for an ultrasound. He found a very large and solid right ovary with a large fluid cyst. With his findings he ordered a large panel of hormonal blood test and cancer markers. Three weeks later we went back to see him and told me my Anti-Mullerian hormone (AMH) was the highest he has every seen it in his profession. It was 121. I also had elevated estrogen and no FSH. He then looked at me in the eye and said I believe you have Granulosa Cell Tumor. It's a form of ovarian cancer. He took another ultrasound of my ovary and said the fluid portion was gone, but the rest looked unchanged.
This is when I was then referred to my next doctor: a gynecological oncologist. With a 50 year old he would take everything, but with me he said he want to preserve fertility. This is when he also would not speculate about cancer; I think this is because he really didn't believe that is what it was. I don't fit the profile. Plus, GCT is really rare, especially for my age group.
About this time we started letting family know what was going on so we could pull strength from their prayers and faith. I am so grateful that we did so because the blessings began to pour in on our family.
(A couple of these letters were composed by Abe and I simultaneously. It was oddly fun and very therapeutic to choose our words together.)
August 9, 2015
Dear Family and close Friends,
During the past month Lindsey has had some tests and ultrasounds performed. Last week we discovered that she has a tumor on/in one of her ovaries. The results of her initial blood test strongly indicate that it could be a Granulosa cell tumor (a rare form of ovarian cancer). We have been referred to a Gynecologic Oncologist in Reno as well as one in Las Vegas. There is hope to hear from and see one of them this week. We will know more after we visit with him. We do know that it will require surgery to remove her ovary and tumor. We will go from there. (Biopsies will give us answers)
We wanted to inform family and close friends so that we might be in your thought and prayers.
We are still trying to wrap our minds around the information given to us and at times is difficult to discuss. We will inform you with any information as it becomes available. We know that having your support and prayers through this time will help strengthen us. However, we ask that we are still able to maintain privacy outside of this close circle. (i.e this email)
With Love,
Abe, Lindsey, Crew, and Sawyer
August 19, 2015
We went to Reno for my doctors appointment today. There was a lot of waiting! Hours!
After a consult it has been decided to do a less aggressive laparoscopy surgery to remove my ovary/tumor and perform a d/c to test those cells for cancer as well. He refused to speculate but did think these steps were necessary to see what is going on. We will proceed after we get the results.
My surgery is this coming Monday. I have to be there at 6am for prep. My surgery will hopefully take place within 3 hours, but it's not guaranteed. It could be much later on in the day (if today was any type of indication, I won't be holding my breath)
Thank you again for all of those that have reached out to me and my family. Those that have shared their kind words, support, faith, and prayers have really helped buoy us up. I feel very grateful for the support.
Love,
Lindsey
My surgery is this coming Monday. I have to be there at 6am for prep. My surgery will hopefully take place within 3 hours, but it's not guaranteed. It could be much later on in the day (if today was any type of indication, I won't be holding my breath)
Thank you again for all of those that have reached out to me and my family. Those that have shared their kind words, support, faith, and prayers have really helped buoy us up. I feel very grateful for the support.
Love,
Lindsey
August 24, 2015
(Please forgive the many typos and a lack of continuous thought....these drugs are strong)
Hello my dear family! I am in the car on my way home. Your prayers and fasting on my behalf have been such a blessing, as well as my family's! I was up at 3:30 am and checked in at 5:30 am. I was the first surgery and it went well, only slightly longer than expected.
I woke up in a good amount of pain, but they helped take care of me. My tumor was large enough that they had to cut roughly a 2.5 inch incision to get it out. The other two holes stayed laparoscopic size.
I took about 7 hours in recovery before I was able to head home. I am looking forward to kissing my boys and some more sleep!
I would love to share with you all some of the tender mercies that have been sent to me. I am sure there are many I am unaware of, but here are some that have stuck out.
When I went to have my pre-surgery labs done last week, I still was slightly apprehensive about the doctor. The lady that drew my blood had been a nurse for 12 years in the same hospital as him and her son has had about 40-50 surgeries due to some healthy condition; she knows a lot of the doctors and their reputation. She then told me that she would have my doctor operator in her with full confidence if she had something similar. That lifted the rest of my worry.
My Mom was able to drop everything and she and my Dad purchased a last minute flight for an amazing price.
This past weekend was stake conference. Our visiting authority is from the 70, Elder Palmer. Abe was able to interact with him during the stake presidency instruction and then we were able to meet with him at a dinner before the adult session. As he spoke that evening he began to share a brief amount of information on how his 29 year old daughter has been currently diagnosed with a brain tumor. He only shared a little bit of information, but he spoke of a prayer that he had pled to Father in Heaven. In his answer he was knew that his daughter most likely would not be alright, but everything would be alright; it was part of the plan and he felt at peace. The spirit also whispered this to me as he spoke.
After the Saturday session was over, Elder Palmer spoke with many from the audience but then came to Abe and I for a private conversation. He sat us down and asked how he could help, he spoke words of comfort, and prayed for us. I feel that the Lord loves me so much to send this amazing man. I had a thought pass through my mind last week that the attending authority would want to speak with me, but I brushed it off as a silly thought. I am now humbled.
Sunday after the adult session, I was able to have Abe, my father-in-law, Abe's uncle, the stake presidency, and Elder Palmer administer a priesthood blessing. It spoke to me the truths I needed to hear. It was a delight to have so much love, support, and compassion shared with me and my family. I feel so lucky to have married Abe and have his support system fully encompass me into it.
I cannot deny the extreme amount of comfort that has been placed upon me. I went from confused, scared, and angry to feeling loved, cared for, and known by my Heavenly Father. This is due to all of the family love, support, prayers, fastings, and blessing. We have an amazing support system!!!!!
Thank you for all of your love!
Love,
Lindsey
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| I asked for pictures and got 24! It was pretty neat seeing what my insides look like. |
September 1, 2015
Lindsey has been recovering well from her first surgery. Ilene dropped everything and came to help out for the first week. We are grateful for her sacrifice and help. Many friends and family are now helping feed our family and provide support.
Dr. Lim called us tonight to let us know that the ovary/tumor he removed was a`malignant granulosa cell tumor. We still don't know how advanced it is. We have another appointment in two weeks where we will discuss options and the plan Dr Lim would like to put in place. The D&C came back as benign!
Lindsey will be scheduled to have a full body CAT scan before her appointment. Her appointment is September 16. Dr. Lim Informed us that she will need a second, more aggressive, surgery to remove lymph nodes, the omentum, and possibly other tissue. He did say the other ovary appeared healthy and it was good to not have it in both. However, no biopsy has been performed on it to confirm good ovarian health. We believe Dr Lim will biopsy and look at tissue under a microscope during the surgery. We are not certain if this is the case.
The results will give the cancer staging. We do know that Granulosa is a slow growing cancer, yet not much is known because only 2% of all ovarian cancer is Granulosa.
Feel free to call Lindsey and chat it up with her :) She is a cute, smelly lump on the couch, without much to do. If you have any cancer questions, she probably won’t know the answer because her brain froze up and her IQ dropped when Dr Lim said, “Cancer.” What we have disclosed is really all we know at this point.
Thank you for your prayers, fasting, temple attendance, and thoughts on our behalf. Due to everyone's faith, our family has had some very sweet and tender mercies. They have been a great blessing to us! It has increased our faith, strength, and comfort beyond our own capacity. Now that we know what we are dealing with please feel free to share with those we love so we can have their prayers with us as well.
With great love,
Abe, Lindsey, Crew and Sawyer
September 17, 2015
Hello Friends and Family,
I know many of you are aware of my most recent doctors visit. The day
prior I had a CAT scan and my doctor said it came back clear. That
being sad, there is a 40% false negative. What horrible odds!
My appointment yesterday was to check up my healing. I also discovered
that I am not supposed to be lifting still. Oops. Back to phase 1.
But I did tell them that I started light running and went back to
ballet on Monday. They didn't tell me to stop. . . It felt awesome to
move and use muscles! To have something normal to focus on.
As far as the next phase goes, I have been given all of the pros and
cons and have now been told I have to choose what I want. The surgery
would be done with robotics (DaVinci), and I would have 6 or so
laparoscopic incisions. Not a huge, full belly incision. The surgery
is a lot more risky than the last. It goes right next to the aortic
artery to remove lymph nodes and must use extreme caution. He then
would remove lymph nodes deeper in my pelvis, and this requires
passing through a significant amount of tissue. The omentum would also
be removed. All that is removed would be tested for cancer cells in a
lab. If it is present in anything, I will then be considered past
stage 1. He said anything past stage 1 he would do chemo. Recovery
from surgery is at least 4 weeks. (This last surgery I was told 1-2)
but I know that doesn't mean normal life can resume. It mostly means I
will be able to function after a month. Long term, I run the risk of
having lymphedma due to poor pelvic drainage and could deal with
swelling legs the rest of my life. Swelling can cause it's own issues.
However, knowing if I am or am not past stage 1 could be life saving
and mentally reassuring.
The second option is do nothing. Wait, watch, blood test and exams
every 6 months. Either way I will have blood test and be seen every 6
months for the rest of my life. The down side to this is that I could
be past a stage 1 and I don't know. Getting into a stage 3 and 4 is a
lot harder to treat.
Abe and I feel that we need another medical opinion and we trust the
doctor who accurately diagnosed me off of blood test and an
ultrasound. We will be going back to him next week to talk about some
of the potential long term affects this surgery could have. There are
also plans to contact the Huntsman Cancer Center and get another
gyn/oncologist opinion about surgery.
We pressed my doctor to give us an answer on what he would do if it
was his daughter/wife/sister, and he said he would do exactly what he
is doing for us. Give them all the information and let them decide. He
also said if you had 10 gyn/oncologist all in the same room, his
opinion was that 6 would argue for the surgery and 4 would argue
against it.
So here we are, trying to determine the best path. We are praying for
guidance. We tend to lean towards the surgery, but with a few requests
we would like to make. Such as using dye at the original tumor site to
see what lymph nodes move the fluid and only taking those. We are also
wondering if he cannot be super aggressive in lymph node removal in
general. Our opinion on this is based off of follow up research papers
that we have read. Getting more information is definitely necessary at
this point. I do not want fear to govern my choice.
Thank you everyone for your continued prayers, letters, packages,
emails, phone calls, and texts. I love the support and I know I have
an army backing me and my family up. You all are amazing!
Love,
Lindsey and Abe
Through this all I have felt my Heavenly Father's love. I know that He saw in me the opportunity to grow and become more reliant upon him. I am stretching and strengthening my testimony. I know that the power of prayer has brought so many blessings and joy to my life. I find more joy in the simple things. My first day back to dance class was such a slice of heaven. I am so extremely grateful for the body I have been given that can move, dance, jump, and run. I know that families are forever and they bring such a great amount of joy.
For those that don't know what to say, a hug is wonderful. A prayer is even better. Life gives us all hard issues to deal with, and currently this is mine and my family's struggle. This too shall pass.
