Part of the battle with cancer is facing fear of the unknown and feeling out of control. It helped me to read about cancer or talk with others who had cancer – I wanted to know when my hair would fall out and when it would grow back and what a Bone Marrow Transplant was like and if it was worth it. It was worth it for me. My life is sweeter now than it was before I was diagnosed with cancer because my perspective of life is deeper and my walk with Jesus is closer because I need Him- He is more critical to my every day. But it has been a difficult journey. Maybe this will help someone else on the path.
In April 2012, I had a routine blood test and my GFR indicated that my kidneys were only functioning at about 33%. I was referred to a kidney doctor who ordered tests
Diary 4/28/12: “Some mercies of God during this time of scary tests- 17 vials of blood taken in 6 days and 3 biopsies (of my fat, bones and kidneys). I have been waked up to a song in the mornings. “He loves me.. He loves me…Jesus loves me.”
5-24-12. “Lord, I am struggling and I feel far from You. There is such a fear of the future- of my kidneys failing and of dialysis of my bones hurting.”
5/29/12 I have Multiple Myeloma and Light Chain Deposition Disease, but I just had the nicest weekend. I felt like my husband showered me with every love language known. He fixed the sprinklers and mowed and trimmed the yard. He hung a little thing in my garage so I would know how far to pull my car in. We spent all this rainy Memorial Day weekend alone together. We snuggled a lot, and went to a car lot and bought a 2012 Subaru. We never did that sort of thing. We decided to tell no one but the kids about my cancer. Our son came over Saturday morning and oldest daughter made me frozen meals and daughter who lives out of town called.
Multiple Myeloma is an incurable cancer of the blood, and my cancerous cells break down into “Kappa Free Light Chains”. These little fragments from the cancer cells were forming damaging structures in my kidneys – which is a second illness called Light Chain Deposition Disease.
75% of my kidneys were destroyed, I was already at stage 3 Multiple Myeloma and stage 4 Chronic Kidney disease by the time I was diagnosed. Of course I looked on the internet and it said to expect to live about 27 months from stage 3 MM. 2 years!!! I had expected 25 years. I was stunned, numb – I kept trying to wrap my head around “2 years”.
I was put on 40 mg dexamethasone per day for 4 days and then off for 4 days in cycles – it made me feel like I was a methamphetamine freak – I frantically clean my house and garage and was not able to sleep on my “speed days”- and my hands shook when I put on my makeup or wrote. On the 4 days off the Dex I would crash and hardly have the energy to move. I would fall asleep in the chair at night. I also got Velcade shots twice a week and took Thalidomide pills. After 2 1/2 months of that my beta 2 macroglobulin level was still very high. If it is above 5.5 you are stage 3 MM by the International Staging – I was still 8.45 on 8/16/12- not a good prognosis.
My husband and I went to the lake many weekends that summer and I would have tears running down my cheeks because the world was so beautiful and my mortality was always on my mind. I would wake in the night and be so afraid of what the next treatment would be, but so comforted to reach out and touch my husband. I didn’t want to see people I loved because I was so sad to think of dying and leaving them. Before that summer of 2012, thinking of heaven was like thinking of Hawaii for me – I had been a Christian about 30 years and taught in Sunday School 18 years. I taught that in heaven we would see Jesus and have peace, no pain and new adventures, but now I realized that when I went, I would not come back – and it would be much sooner than I had expected. My faith in God was put to the test. Did I believe what the Bible said? Was heaven real? Was God still good? Loving?
The Dex caused me to gain 6 pounds in 6 weeks. I took all my pants out of my closet and bought bigger pants that fit. I couldn’t even fit my wedding ring on my hand so I put it in my jewelry box and I had my husband cut off the gold ring that my grandparents had given me when I was 12 years old.
My face swelled from the Dex and I went to the house of my daughter, Kelly, and sat on her porch and cried and told her how embarrassed I was at my appearance. She told me that when she went to a race, the person she was most inspired by was the kid at the very end of the race who didn’t have a chance of winning but kept running anyway. It comforted me. I needed that same courage and perseverance when I went to the grocery store or saw friends and felt self-conscious.
When I went to church, I felt the presence of God and just cried and cried. I have heard that tears are a gift of God but I was embarrassed that I would cry so easily. I did not want to answer questions about how I was doing for fear I would start crying. Some people seem to glide effortlessly through their trials –I didn’t feel I was handling things very well.
It was a process of letting go of things – a series of “losses”. I had always assumed I would outlive my husband, but now I realized that he would almost certainly outlive me. He might remarry (and I would want him to). I was surprised to realize I had still been arguing with him about little things like how much to spend on Christmas presents. How trivial that looked now.
I had to let go of my home, my family, the identity I had found in activities and my job- After I got on all the cancer drugs, I could hardly put one foot in front of the other so I had to simplify.
God now seemed huge, distant and scary. As if the One I had walked with all these years was completely different than I had thought. I told God how small and insignificant I felt and I accused Him of not knowing what it feels like to be a helpless person dreading pain and death. Then He brought to my mind – Jesus!
Jesus!!! I could picture Him so young and strong and full of life and laughter. Jesus knew what it was to be in pain and to dread pain and He even knew what it felt like to die. I thought of how Jesus died so young – just 33.
I thought of how Jesus would leave His small group of disciples facing a big world – and His group didn’t look promising when He died. He had to leave everything in His Father’s hands just as I would have to leave all the unfinished business of my life in His hands. Jesus knew what it felt like to grieve and to be sad about having loved ones grieving for Him. He wept at the tomb of Lazarus- even though He knew He would raise Lazarus from the dead. I believe He cried to see the sadness of Lazarus’ sisters. Jesus knew what I felt like. He knew what it felt like to face death.
I had never realized what a comfort it is to suffering people that Jesus suffered.
When I was going through my hardest times, my thoughts would go to Jesus every few minutes. 1000 times a day I would ask, “Are you there? Will You catch me when I die? Is this Your Will?”
A scripture I clung to was John 3:16: When I was afraid I would repeat, “God so loved the world”, and I would feel peace. Another time I would feel anxious, I would focus on the promise “that He gave His only begotten Son, that whoever should believe in Him would not perish but have everlasting life.”
I had been a Christian 30 years and finally truly appreciated the gift of Jesus dying on the cross so I could have a future in heaven. He gave me eternal life –He had walked through these 30 years with me, but the amazing promise of the Bible is that my relationship with Jesus will never end. He will NEVER leave me or forsake me.
My husband and I went to Denver in October 2012 for tests. And Oct 31, 2012, Halloween, we I moved down to an apartment we rented in Denver near Presbyterian St Luke Hospital.
The first 10 days we stayed in the apartment and went in to the hospital every day – the first few days I got 2 shots each day to get my stem cells to be released from my bones, then I got a “port” put in – a medical device that goes straight into the big vessels above the heart. Having this “port” would allow access to my blood without sticking me with needles each time. The 4, 5, 6th day they hooked me up to a machine like a dialysis machine for several hours each day where my blood circulated through to collect my stem cells that had come out of my bones.
Nov 16th, I got checked into hospital as “in patient” for the stem cell transplant. The next day I was given 140 mg Melphalan -a “sledge hammer” chemo drug that immediately kills the bone marrow and all rapidly dividing cells in the body, but there are still Neutrophils (blood cells) alive because they live about a week in the blood. Just 2 days after the chemo, Nov 19, they put 6 million of my stem cells (collected from the machine ) back into my blood. I was puffy faced from the Dex again, and smelled like creamed corn and garlic for a few days from the preservative of stem cells. The stem cells apparently “want” to get back into the bones but it takes about 10 days for them to find their way back into the bones. Then the bone marrow begins to grow from the stem cells. Every day they posted my Absolute Neutrophil Count on a board by my bed.
- ANC -4500 – Hubby walks with me around the hospital and before he leaves at night, he tucks my sweatshirt around my feet and points out his cell phone number by my bed. I listen to Fernando Ortega on my ipad in the night.
- Nov 22 Thanksgiving –ANC- 2800 but couldn’t eat- too nauseous
- Nov 23 ANC 1200 not many blood cells still survive
- Nov 24 Steve picked up my sister from the airport. She moved into the apartment we rented and Steve headed back to our hometown. He has been down here with me 3 1/2 weeks and I appreciate him more than any time in my life.
- ANC 400- very few blood cells left. I am tired, but not yet at the bottom which would be ANC of zero. I’m nauseous but nurses have changed anti nausea meds. I brush my teeth and swish my mouth with bicarbonate of soda water because Malphalan is especially hard on the digestive tract and most people get mouth sores and diarrhea because the entire digestive tract is made up of rapidly dividing cells that are destroyed by Malphalan.
- Nov 26 hair falling out in clumps (hair follicles are also rapidly dividing cells and are killed by this chemo), so a nurse shaved my head.
- Nov 27 Got moved to the Critical Care Unit because I got a temp of 104 for 24 hours, my blood pressure dropped and I developed a wicked rash all over my body. They put me on oxygen and they pumped about 15 pounds (7kg) of fluid in me. My rash itched and skin around my eyes was scaly and raw. I looked and felt terrible- red, scaly, bald, puffy – ugh. I had a reaction to my own stem cells- graft versus host they found from a biopsy!
- The next week I was pretty much out of it, but slowly, while I was in intensive care, my ANC started to rise. First it was 50 then next day 200. My stem cells were starting to produce blood cells!
- ANC 700 then 1500
- Dec 8 Steve came to drive me home and my sister flew back to her home. I was, bald, and weak as a kitten but I was alive.
- A few years ago they kept people in the hospital in isolation for 90 days after a transplant. My immune system was destroyed with the bone marrow so in a year I will get my childhood immunizations again. We had no presents or trappings for Christmas, but life was the biggest gift that Christmas.
- Jan 19 – I have had a nice Jan. I wake up, read Bible, go walk slowly on treadmill at about 2 mph. I do resistance bands because I am so weak, I am like a very old person – I cannot get up from a chair without help. I have no hair and about 3 eyelashes, but it feels good to put on nice clothes and makeup. I take at least one nap each day and I have restricted lifestyle (don’t go anywhere) to avoid getting an infection and to let my body get stronger.
- Jan 27-I am about 70 days from my transplant and I am not 100% back to my old self, but I am maybe 70%. I walk on a treadmill 30 min every morning and do exercises at home 3 times a week to get stronger. I still feel like an old person when trying to stand up – no strength and for months, when I see old people walking into the Post Office or grocery store, I realize that I know what they feel like. I have neuropathy in my feet from the Velcade – I walk like I have club feet first thing in the morning, but then they loosen up. But life is sweet and my quality of life is surprisingly good right now. I wear a hat around the house and wear a wig when I go out ( I work from home from a few hours a day right now) but I am just starting to grow peach fuzz for hair.
- Jan 31-. My husband never makes me feel unattractive even though I am bald and I am just growing this weird whispy feathery grayish white hair. I wear a hat except when I sleep or take a bath or when I wear a wig – but he never acts different towards me. He still comes up behind me and hugs me or tells me I am beautiful. His motto is that we live one day at a time. He says that he could get hit by a car tomorrow too. Even if we were 75 years old, I think it is hard to accept our mortality.
- Life is incredibly precious. It seems sweeter than ever and I just look at each day and marvel at the colors and beauty! I am very excited to spend some time with each of my children and grandchildren this spring and summer – I have not been allowed to go see the little ones for several months (they live out of town), nor go to church nor go see my mother at the nursing home.
- Mon Feb 11, 2013 Today was almost 90 days after my Auto Stem Cell replacement – and darn, my light chains are creeping back up. That is not good because it means that my Multiple Myeloma was in my stems cells that got transplanted back into me. I am supposed to start Revlimid tomorrow. I need to learn to have this multiple myeloma and yet not be obsessed with it. I want to focus on life and my family and all I have to be grateful for. I grieved enough last summer & fall. I am tired of grieving and I want to appreciate what time I have.
- Since my cancer markers started rising within a couple of months of getting home, I didn’t have a real remission – Jesus helps me and I trust Him to have a perfect plan for my life.
- HAIR I mentioned that white & gray wispy hair came in first. I heard that the color producing cells near the hair follicles were killed in stem cell transplant but might come back. I think that first hair fell out because at about 4 months, it came in gray and flat to my hear. At 5 months after the BMT, my hair was about 1/2″ long and kinky like I just had a strong perm. About 7 months after the BMT, my hair was about 1″long and a little less kinky. I stopped wearing a wig at that point. The curl gradually loosened so I looked like some variation of Little Orphan Annie up to about 1 year after the BMT. I had my hair trimmed regularly – so it seemed my hair stayed about 2″long for another year, but that was because I had the damaged looking hair cut off each month. By 18 months after the BMT, my hair was relatively straight and healthy and about 2-3″ long. By 21 months after the BMT, the top hair was about 4″ long, thicker than before I lost it and healthy and straight. It stayed gray.
- C-Diff -I was told to wash my hands at least 10x per day to avoid getting sick. One thing I wish I had been told is that when you are on antibiotics for months at a time, you have no healthy bacteria in your gut. So, when I went to the nursing home to see my mother about 4 months after my Bone Marrow Transplant, I got C-Diff. It took 4 different treatments over about 6 months and lost about 15 pounds (tough way to lose weight) and now I cannot take antibiotics without consulting my Infectious Disease doctor.
- After 5-6 months of fighting this, I called my Pastor and asked him to anoint me with oil and pray for me. He did and I have never had C-Diff since then, and he turned and prayed for my daughter to have a child – and she got pregnant 2 weeks later!
- I now take a probiotics every day (I cycle between “Mercola’s complete probiotics”, “Healthy Trinity” & “Saccharomyces Boulardii”). I can not go inside hospitals or nursing homes. I go see my mother regularly, but stay outside and my father brings her outside to visit in the summer. In the winter we talk on cell phones while I park outside her room so we can see each other through the window. Even when I went in hospital briefly to see my newest grandson after he was born (the one the Pastor prayed for!) I wore gloves and a mask and took a shower and washed my clothes immediately after I went out of hospital.
A book I found showed stages of grief as a deep valley – first going into the valley with : shock, numbness, denial, emotional outbursts, anger, fear, searching, and disorganization.
At the bottom was: panic, guilt, loneliness, isolation, depression
Coming out of the valley were new challenges: re-entry challenges, new relationships, new strengths, new patterns, hope, affirmation, and finally – helping others. That is why I am writing this. I hope to help someone else.
Good thing that have come from this:
- I appreciate God (especially Jesus), life, my family & my husband more.
- Eternal life is a reality and comfort to me, now. Recently I taught a Sunday School class about the life of John the Baptist. This year my lesson didn’t end at his beheading – I added a section about him arriving in Heaven. This world is not the end of the story!
- I am bolder in sharing my faith because I realize how fragile this life is.
- I don’t feel afraid of the future – mine or the future of the world. God is in control!
- I understand better how to help those who are hurting.
- The world has never looked and smelled and felt more beautiful.
It has been several years since my Stem Cell Transplant and through my experience with cancer I have found a deeper appreciation for this world, my family and my God. The peace I feel is not because I am in remission – I felt this peace when my cancer markers were creeping up each month. My peace came when I accepted God’s Will and I realized that no one lives forever. We all need to find peace with that. Jesus really is here to walk through everything with me. I feel His comfort and His presence, and I have found that God has been constant and faithful and somehow the process of letting go has made me less fearful of the future – my own future or the future of the world. Jesus may not have worked in ways that I would have chosen, in fact I would often say, “Hard isn’t always bad and easy isn’t always good'” as a mantra. God has strengthened my body and my faith. Every month when I am waiting for the results of my blood test, I think about eternity and rest in the knowledge that heaven is real and God is good . DIABETIC DIET – Ketogenic diet Every month I have a blood test that is sent off to Mayo clinic to measure my Kappa Free Light Chains – those are my “cancer markers”. Starting a couple of months after I got home from Denver, they began slowly creeping up.
- March 23, 2014, I asked my oncologist if avoiding sugar can help prolong remission. He said the new studies show that if a cancer patient keeps their blood sugar low and steady by following a Diabetic or Atkins type diet it seems to help prolong remission. So, I went home and ordered “Dr Bernstein’s Diabetes Solution”. The book recommended 6 g carb in morning, 12 g carb for lunch & afternoon and 12 g carb for rest of day – 30 g carb per day. I got a glucose meter to test my own blood and see what caused my blood glucose to spike and cut out carbs. The book even had pages telling what different medications did to blood glucose
- It was hard at first, so I did Internet searches to boost my resolve. I looked up “cancer & blood sugar” and found a lot of studies – I have put links to some studies on the page called Ketogenic diet/Cancer links.
- The results of even 1 month of trying to watch my blood sugar were encouraging and I was surprised that my kidney numbers also improved (my nephrologist was surprised, too!).
The neuropathy in my feet went away within the first 4 months but I felt very tired when I started the very low carb diet. Then I read the new Atkins diet book and the authors suggested increasing the amount of sodium- sure enough, I felt much better when I increased my sodium and potassium intake. And my kidney function did not get worse.
- I got a blood ketone meter and started testing my blood ketones every night because the studies seem to indicate that low blood glucose and low insulin AND higher ketones all had an effect on cancer cells.
- July 6 1.9 ketones (started replacing some oils with coconut oil. Need to take Omega 3 every day to balance it out but coconut oil seems to turn to ketones easily & raise ketone level)
LAB RESULTS after 4 months of low carb.
- July 21, 2014 Creatinine =1.484708
- Kappa Free Light Chains – 14.87 ( In NORMAL RANGE!!)
- Lambda Free Light Chains – 14.56 (normal)
- Ratio 1.02
My kidney function had been 20- 25% the first summer after being diagnosed. (low enough to be able to have a kidney transplant if I didn’t have cancer). Kidney function was up to 41-43% by the end of July, 2014, which even impressed my kidney doctor! I decided to start a blog and write what I eat in case this works for other people with cancer. Journaling also helps me to not get sloppy in my new diet and lifestyle: good recipes makes all the difference.
My cancer markers remained in the normal range in August and Sept of 2014, but went up on Nov 10, 2014. So, I looked at my diet carefully and continued reading books and studies to see what I had gotten off the track with in November. I didn’t realize at the time, but now I realize that MM changes and adapts, so I need to keep finding new ways to fight it.
I started taking blood glucose readings several times a day again, started counting carbs and proteins because I found studies that show blood cancers need to have low protein as much as low carbs.
I have included many links to studies on the Ketogenic/Cancer diet links page. I eat coconut oil in place of some other fats- coconut oil is a medium chain triglyceride (MCT) and seems to help your body produce ketones.
- Books that I have read in order of how I read them :
- Dr. Bernsteins Diabetic Diet
- Dr. Bernsteins Diabetic Solution
- The Art and Science of Low Carbohydrate Performance
- The Art and Science of Low Carbohydrate Living by Jeff Volek PhD, RD and Stephen D Phinney MD, PhD
- The new Atkins diet book
- Ketogenic diets – by Freeman & 3 other doctors at Johns Hopkins – learned that even toothpaste and lotions can have carbohydrates
- Cancer as a Metabolic Disease – by Thomas Seyfried PhD. Learned a lot but especially important was to learn that protein must be limited in blood cancers like mine
- Tripping over the Truth – tells of the search for cancer in short stories.
- Wahls Protocol- by Dr Terry Wahls
- Anti Cancer life style
- Foods to Fight Cancer- Richard Beliveau, PhD