Mar 24, 2012
There are probably not many people on MH that follow my story anymore, but for those that are still here, I wanted to share my life's latest update.
After battling colon cancer for 10 years, my mom passed away yesterday afternoon, March 23, 2012. We do not yet know if her cancer is the cause of death, or if it was infection and inflammation due to her last chemo treatment causing her to go from pneumonia recovery into a relapse of pneumonitis (extremely severe pneumonia) and/or ARDS (acute respiratory distress syndrome). A focal autopsy has been conducted on her lungs and we should have an answer in a week or two. But it doesn't really matter. Whatever the cause of death was, she fought it bravely up to her very last breath, and I'm so proud of her and admire her so much. The void I feel in my life without her now is inexplicable.
I wanted to write about this because I feel like sharing her story is a very positive, encouraging, and blessed event and maybe someone might happen across this journal one day and have their hope and faith renewed, and be inspired to keep fighting for the things that matter most in life and to seek the guidance of our loving God. I think my mom's last few years of life are a testimony to how awesome God is--at least, that was my family's experience.
It all started 10 years ago. My mom was diagnosed with colo-rectal cancer. She had a colon resection surgery and was told the tumor was stage 1 cancer, so the surgery was all she'd need to get rid of it and move on with life. She had 8 inches of her colon removed. No chemo, no radiation. She continued with oncology checks over the next seven years bi-annually, and cancer never showed up in her blood work.
Six years into "remission," she developed a cough. Over a little more than a year, the cough progressed to a constant, hacking dry cough (she was never a smoker). She was treated for URIs, bronchitis, asthma, allergies, and acid reflux for a year, but the cough never subsided. It got so bad that she began wheezing, and the wheezing became so bad and deep that she could be heard across a room or over a phone. Her oncologist referred her to a pulmanolgist to do a bronchoscopy. That revealed a large mass in her right lung in the lower lobe. A CT scan was also done and revealed the same thing. The biopsy from the bronch revealed that it was a tumor in her lung that was colon cancer cells. She had the lower ½ of her right lung surgically removed in February 2009 and struggled with a difficult recovery. We found out after the surgery why her slow-growing colon cancer cells forming a tumor in her lung for seven years had gone undetected, despite bi-annual blood work for cancer markers: a very small fraction of the cancer patient population does not show cancer markers on their blood work. Mom was one of them. And as far as colon cancer metastasizing into the lungs--that only happens in about 2% of colo-rectal cancer patients. So waiting over a year to check her lungs for cancer was an unfortunate effect of "one size fits all" treatment types. Why look for something that won't be there 98% of the time, right? I still struggle with that concept, but there's nothing I can do about it.
Over the next year, she went through chemo and radiation treatments. She had her last radiation treatment a week before I had my second son in January 2010. But she knew that wasn't the end. She just knew. She started preparing everything in her will and estate and all else. It kind of bothered me, but I knew it had to be done.
The cancer did come back; a PET scan revealed millimeter size tumors in the lower lobe of her left lung in August 2011. She had a bronchoscopy but the tumors were too small to get a biopsy. But the doctors agreed that the behavior of the tumors and the time frame of them showing up meant it was cancer again. She was told she had one chemo option left, as she was resistant to the other types used the year before, and this was her last hope for chemo. If she beat the cancer again and it came back a fourth time, she had no options except whatever alternative treatments were available, and if this round of chemo didn't beat the cancer, this cancer battle would be fatal. As always, she prepared to fight it. She was to have 12 chemo treatments every other week for three days at a time from October 2011 to April 2012. Going through chemo this time was much harder on her. Throughout 2009, she worked part time. This round, she lost all extra strength and had to be on full disability leave.
But she refused to let the cancer keep her down. She was determined to keep life going as normally as possible for herself, my 16 year old sister, and her grandsons (my two boys). Her passion was in horseback riding with English saddleseat on saddlebred horses. Her horse, Charlie, kept her will strong--she rode him and competed in shows with him up through January, taking first place many times, despite having only 1½ lungs and enduring chemo. It was difficult for her to breathe when she rode because her stamina was weakened, but she did it anyway and she kicked butt! She was so strong.
She also was sure to keep my sister riding and got my oldest son, Trevor, into riding. Her pride and motivation to live life to the fullest really beamed watching those two ride and compete. My sister, Emma, is like the young version of our mother riding, both in appearance and strong, stubborn will. Trevor took to riding like a prodigy. After less than 10 lessons, the instructor wanted him competing, and he's not once gotten less than first place. Those two kids made my mom's whole countenance beam so brightly--she was so proud of them!
January 28, 2012, things took a turn for the worst. Mom kept coughing and having a lot of trouble regaining the ability to breathe with ease. That night, I rushed her to the hospital after driving out to her house to check on her because she didn't sound good on a phone call. She was coughing up massive amounts of blood and choking on it. She was hospitalized for four days and had a bronchoscopy to determine the source of bleeding. She had pneumonia, and the inflammation around the staples in her right lung that were left there after her 2009 surgery caused the bleeding. We were never told staples were used to suture her lung. To say we were shocked when the pulmanologist said, "Don't be surprised if she coughs up a staple" is an understatement.
Her chemo was held off until the week of Valentine's Day to recover from the pneumonia. She did well through that 9th chemo treatment. Her 10th chemo was set for Feb 27-29. She went in on the 27th and after the treatment, began feeling very sick. Tuesday, she had a fever and extreme weakness, so she was monitored at the cancer center all day and not given the chemo, and they sent her home that night. She was barely able to walk in the door for her chemo on the 29th. An ambulance was called to get her to the hospital. She had pneumonia again, and it was bad. Her ability to breathe on her own declined severely between the 29th and March 9th--by March 7th she was on a full oxygen mask with the highest flow of O2 possible. A bronchoscopy was done the afternoon of the 9th to see how bad the pneumonia was and to suction out any fluid. I took the afternoon off from work to get the details of her procedure, only expecting to hear that it was severe pneumonia and she'd be hospitalized for another week or so. No big deal. We'd get her through this, re-start the chemo, and get on with life.
Instead, the pulmanologist tells me bluntly in a matter of less than a minute into the conversation that he could not finish the bronch because she was so weak that she went into cardiac arrest and needed to be resuscitated. However, what he believed he saw was malignant tumors filling up her lungs and that he expected her to only live another few days; two to three weeks if she was actually that lucky. It was like being hit in the head with a hammer and run over by a truck at the same time. I nearly collapsed in the hallway and had to basically be carried into a consultation room, where he and his nurse continued to tell me that I needed to line up hospice care immediately and prepare for her to die. They were so sorry, but after attempting to calm me for a few minutes, it was basically, "Have a nice day, we have to move on with ours."
It was me, and only me, who got that news. And it was me, and only me, who had to tell my mom that she was not expected to recover or survive more than three weeks once she was brought back to her room. The pulmanologist did not come back to consult with her that night like he said he would. It was a really rough night--lots of tears, unanswered questions, confusion, and heartbreak. My mom was stunned. She wasn't any more prepared to hear that than the rest of us; she kept asking how her cancer could explode like that when, at the end of December, her scans were stabilized. How could the chest x-rays and CT scans done just in the last week of her hospitalization not reveal massive tumors in her lungs, but just pneumonia? She was not ready to accept she was going to die anytime soon--she wanted to see my sister graduate in a year and a half. She wanted to see her go to her first prom this upcoming April 13. She wanted to see my husband graduate from college. How could it be possible that her life would end in three weeks or less?! And worse--how could I answer any of those questions for her? All we could do was cry and hold each other. Her, me, Emma, her boyfriend Kevin, and my husband, Brandon, and Brandon's family who had come to pick up the boys for us. All we could do was cry and be confused.
By Monday the 12th, I filed for FMLA leave from work. We fired the pulmanologist that evening. His bedside manner did not improve, and it turns out, he had angered not just us with his blunt and dooming personality, but the entire oncology nursing staff, her oncologist, and her infectious disease doctor...all of whom believed this was only a severe infection and inflammation, with a chance of being treatable, and not a cancer takeover. The oncologist was expecting us to fire the pulmanologist and had a new doctor already lined up as soon as we requested. The new pulmanologist was wonderful and willing to treat my mom rather than refuse her any treatment except comfort measures and to go home and die already because there was no hope. Granted that there was absolutely no way to determine what was causing her decline, there was no guarantee that treatment of any sort would allow her to survive. She was far too weak to endure another bronch, or a surgical biopsy, or chemo. So the most that could be done was the "shotgun approach:" treat her for every type of infection and inflammation system and see if anything worked. She was ready to try, ready to keep fighting for her life. She was put on antibiotics, anti-virals, anti-fungals, steroids, pain killers, blood thinners, and anti-anxiety meds. She continued to need a full O2 mask with the highest flow of O2, being unable to breathe at all without it.
Her condition stabilized between the 12th and the 17th, but there was still the very real risk that she did have just weeks left of life. During those days, we helped her make the most of it we could. I had my two year old, Greydon, make a get well soon video clip for her. Emma and her...boyfriend? (lol)...and her best friend and boyfriend did a prom dress rehearsal for my mom on the 15th. My co-worker took high quality pictures for them at a local park. Then they showed up in her hospital room to show off their attire. Mom had waited all day for that and the moment they walked through her door, her face lit up. The four of those teens all looked so perfect, and Emma was stunningly beautiful! I took Trevor to the stables Saturday morning, the 17th, so I could take pictures of him riding for her, and our "barn family" there got Charlie out and we all gathered around him and made a "we miss you, get well soon" video clip for her. That afternoon, our pastor came to her hospital room and did a marriage commitment ceremony for her and Kevin; so legally, they are not married, but all our family and friends recognize their relationship as husband and wife. They had been so in love for the last five years; none of us could figure out why they didn't marry sooner, lol. They were always perfect together. I went to see her Saturday night and she was holding steady--still weak but not getting worse. I did not show up Sunday because I had to get work done around the house. No one gave me any updates that Sunday, so I figured all was the same.
I was so wrong. I wish someone would have told me Sunday that she'd started hallucinating that afternoon and could not sleep that night. I came in Monday morning to find my mom acting like a total mental case. It took me at least an hour for the shock to wear off. She could be brought out of her hallucinations if you spoke to her for a few moments, but within another few seconds, she'd slip right back. The only good thing about the hallucinations is that none of them were distressing or scary to her. She was content thinking she was sewing, knitting, playing games on her phone, cooking food, watching her favorite shows, working around her farm, riding Charlie, watching Emma and Trevor ride and cheering them on proudly, and thinking Trevor and Greydon were sitting beside her and snuggled up to her. She was happy. We just had to keep her safe--she would often reach for things, nearly falling out of bed, or pull on her tubes and mask. But she was happy. We had a few good laughs playing along with her from time to time, like when she asked me to please cook her a Canadian chicken roast and told me all the ingredients I'd need. I'm convinced she even saw angels. At one point, she looked toward the window and said the little girls looked beautiful in their white dresses and they were singing.
That all changed by Tuesday morning. We could not bring her out of the hallucinations. Although they were happy, our interference with them without realizing we were there or who we were would send her into panic attacks. By the third or fourth time she went into a panic attack and couldn't breathe for fear, she had to be put in a medically induced coma with morphine and Ativan. Just before she fell asleep, Emma had arrived from being pulled out of school to come help us, and Emma sat down on the bed next to her and brought her into reality. Mom recognized her and embraced her in a hug only a mother can give. Then she fell asleep a few minutes later. We did not think she'd wake up again. That was the day all three doctors agreed it was time to stop treatment and resort to only comfort measures and line up hospice. Mom had also said numerous times in her brief moments of reality between Sunday night and Tuesday morning that she was ready to go home. All she wanted anymore was to go home. So it was time to make that happen. I had Brandon bring the boys by the hospital to say goodbye to her, not knowing if she'd survive the night. When Trevor saw her and tried to talk to her, he collapsed with overwhelming grief and tears when he realized she was unresponsive. I had to catch him before he hit the floor, and I held him in my lap on the floor as he sobbed, my own tears wetting his hair.
A miracle happened Wednesday morning. She woke up! I had left at 6 am to go home and take my boys to school/daycare, and was on the way to the daycare after dropping Trevor off when my mom's best friend called me and said I needed to get to the hospital immediately, and bring the kids if I had them, because Mom was awake, talking, and 100% lucid. She was asking for me. I did a U-turn and got to the hospital with Greydon as fast as I could. Once I was there, I called Brandon and told him to get there too. He came, and we all talked to her for a few minutes, then she asked where was Trevor. I told Brandon to go get him from school. He brought Trev to the hospital and Trevor crawled up on the bed and my mom's side and she weakly wrapped her arms around him as he nuzzled his face in her neck and cried, saying he was so happy to see her and how much he was going to miss her. She told him she would always be watching over him, and to keep riding because she was going to be cheering him on from heaven, and that she needed him to tell Greydon about her as he grows up to keep her memory alive for him. It was exactly everything Trevor needed to hear only from her. He left with relatives smiling and when he said goodbye to her, knowing it would be the last time, he said, "I can't wait to see you again in heaven, Grandma."
Mom was conscious and lucid the entire day Wednesday. Every family member and friend who could come, came. She got to tell everyone she loved one last time how much she loved them, what they meant to her in life, and any wishes she had for her passing. Wednesday was an absolute gift from God. She was not expected to wake up before dying.
We were ready to take her home Wednesday morning, the 21st. Hospice was lined up and taking equipment to her house. But then the doctor told us that her vitals were too low and her condition too frail, and if we tried to transport her, she would surely die. I asked her if she wanted to try going home or stay at the hospital. She said she'd stay, but for us to please not leave her side. Of course we'd never leave her--we'd made sure from the beginning of her hospitalization that she was never alone; someone was always there with her.
Thursday morning, between 1:30 and 2:00 am, she woke up from sleeping having difficulty breathing. Kevin and I were in the room with her, so he called the nurses and I went to get Emma and my mom's best friend, Lanita, from the guest room, knowing this would be her last waking moment. I called Brandon and told him to get to the hospital, as he was home watching over the house but the boys were with his parents. He got there quickly. We were all sitting around her bed talking for the last time--the five of us, the five most important people in her life, with no interruptions. It was perfect. Absolutely perfect. Then she fell asleep again because her breathing was so labored that the nurses had to increase her morphine drip. Emma laid down next to her on the bed and wrapped Mom's arm around her and slept with her that night, in Mom's arm. Mom did not wake up after that.
Between Thursday morning and Friday, she slept peacefully. Every time vitals were checked, they declined, but she was so peaceful, so comfortable. Friday was Brandon's birthday, and I knew she was going to leave us on Friday. It was as if God told me that when she fell asleep Thursday morning. I just didn't know when, but I did know she'd join the angels on Friday.
Friday morning, Lanita and I went to the funeral home to line up the package. I got very distressed when I saw the coffin she'd get, so Lanita had us leave immediately. Then she took me to a store to get a dress to wear for the funeral. We were in the checkout lane when Steve, our chaplain and member of our "barn family," called my phone and said to get to the hospital ASAP. We finished the checkout and rushed to the hospital. Brandon had dropped Emma off there already but had to go home to watch Greydon, who refused to be with the grandparents anymore, so Brandon could not be at the hospital at that time. Lanita and I ran into the hospital room. Mom's parents, her sisters, Kevin, Emma, and Steve looked at us as we burst in with empty looks. I said, "Is she gone?"
Kevin said, "Not yet. She was waiting for you."
I sat down at her side and wrapped her arm around my waist and laid my head on her chest and cried. She was taking her last breaths. Kevin leaned over her head, stroking it softly, and sobbed in her ear, "Sweetie. Everyone is here. Your parents, your sisters, Emma, Audrey, and Lanita. Everyone you love is here with you. It's okay to let go now."
She took her last breath.
I wrapped my arms around her emaciated shoulders and cried like I've never cried before. Emma was sitting behind me, leaning on my back and crying. Lanita was holding my shoulders and crying over my neck. I couldn't let go of her. I physically could not make myself let go. Lanita had to pull me off so I could sit up. I cupped her precious face in my hands and told her she was so brave, so strong, so beautiful, and that I loved her SO MUCH and was so proud of her, so honored she was my mother, and that I'll see her again soon. Steve leaned over to me and said how hard she fought to stay with us until Lanita and I got there for her. I tried to stand up and walk out, but could hardly walk. It took me about an hour to calm down once I left the room. Once I was calmed down, I asked what time she passed. Steve said it was about 12:10 pm.
It had been raining all morning. But at 12:10, the skies opened up and the sun shone through her window as we watched that last breath. It was divine. Truly awesome.
Mom had told me at some point between Thursday and Friday the week before, "The day I die, I don't want you to be sad. Think of it as my new birthday. I will be starting a new life, a perfect life, with Jesus in heaven. Don't be sad."
So Friday evening, we celebrated a bittersweet day. We had a cookie cake for Brandon's birthday with 29 candles, and also a smaller cookie cake that said, "Happy birthday Laurie!" and had the number 0 candle on it.
For an outcome I did not want, I honestly could not have asked for the most perfect outcome that God provided for us. Mom died a peaceful, content death, and she and all her loved ones had a chance to say goodbye. Her passing was divine, and now, March 23rd will be a day that my family celebrates the lives of two very loved people.
Our God is an awesome, loving, perfect God.
Thank you for reading.