Wednesday, December 5, 2012
Wednesday, November 7, 2012
How do you cultivate any loving relationship-with family, with friends? It takes communication. God wants to have conversations with you, just like your husband, daughter, parent or friend. One way we communicate with God is through prayer. Prayer is conversing with your Father.
I have had some opportunity to practice this. Like most people, I am inconsistent with this practice. I am easily distracted. I have learned two things that help me to focus. One is the crucial importance of gratitude. The Psalms are full of thanksgiving. We are told that the peace of God will stand guard over us if we present our requests to Him along with our thanks. We are told, simply and straight out, that God's will for us is to seek joy, pray always and be thankful. When I take the time to review all of the things God has done for me, it brings my full attention to my conversation with Him. Some people keep a gratitude journal; this can bring God's gifts to you into sharp definition. Even if you are going through a time of desperation, you can still thank God that He hears you; that He understands and cares what you are going through and for His very great power to redeem.
The second thing that helps me is to pray Scripture. There are so many great prayers and promises in God's Word. You can use Scripture to pray for yourself, for others or to praise God. In John 14:13-14, Jesus says that if we ask in His Name, it will be done. What does that mean? It does NOT mean that every prayer must always end "in Jesus' name" or it will be ignored. It means that when we pray, we are to align ourselves with Jesus. We are His agents, His representatives. We do not pray for things that are contrary to what He has taught us. How can we be sure that we are praying in agreement with God? One way is to pray His Word. Some of the verses I use this way are: 1 Peter 5:6-10; Ephesians 3:16-19; Colossians 1:10-11; 2 Peter 1:5-8; Romans 15:13; 2 Thessalonians 2:16-17; Philippians 1:9-11; any verses from Psalm 145.
I have so very much to learn about God, His majesty and this powerful weapon of righteousness and reconciliation that He has offered to us: praying the Word of God. But, God is faithful to provide many opportunities to show us His grace and mercy.
Friday, September 28, 2012
Also in January, I began my journey with Waldenstrom's at the office of my PCP, resulting in a diagnosis on March 31. Thyroid cancer was diagnosed in October 2010 with surgery in December. In between those dates, I received a letter from my gynecologist that my PAP was abnormal and I needed a cervical biopsy.
My lovely friend and neighbor drove me to the office for the biopsy. I'd had an endometrial biopsy years ago and I remembered that the doctor I had at the time had ordered something to relax me before hand and some pain medication for afterwards. I had taken something for the expected pain just before I went in, so my friend was there to drive. In the exam room they took my history and asked about my last period. I was in perimenopause and hadn't had a period in about 9 months-until I went in for my thyroidectomy.
The nurse discussed that with the doctor and I was told were were adding an endometrial biopsy to the already scheduled cervical biopsy. I remembered how unpleasant the previous one had been-even though I was a bit sedated that time. I mentioned that to my doctor, a great lady about my age, and she was amazed. She said she had endometrial biopsies without anything and it was fine. I said, "you are tougher than I am. In fact, pretty much everyone is tougher than I am." She said I'd be fine. I hate to sound arrogant, but I was right and she was wrong.
I managed to get through without making a scene, mostly. It was about like I remembered and I was glad I had taken something for the pain before coming in. I made it out to the car, but I was surely grateful for the kindness of my friend driving me home. I went to bed, slept for two hours, got up and felt okay.
In 2010 I had a unique opportunity to see why they call what doctors do "practice" because I was starting to feel like a punching bag clown. It seemed like every time I bounced back, there was another biopsy to do. However much I complain, though, I am glad my doctors are thorough and I'd be in a mess if the cancers I have had not been found.
Scripture reference: Corinthians 4:8-9
Wednesday, September 12, 2012
I was surprised at how difficult the isolation was. Bruce and I could only be in the same room for one hour a day and had to stay 6 feet apart. He was chasing me around trying to get a hug. And I wanted to be caught! I slept in the guest room, used a different bathroom, had to wash my eating utensils by hand. We could not be in a car together for more than an hour, not that there was anywhere I could go without threatening people with radiation. I couldn't prepare food for him (or even touch his utensils), launder clothes or linens together. I had to flush the toilet three times whenever I used it.
As much as I hated being in solitary, I was actually pretty nervous about coming out of isolation and also allowing anyone to use the guest room or bathroom for many months afterwards.
Apparently, there is some consternation about allowing irradiated patients go home for isolation. A friend sent me an article from USA Today about an investigation that found one case where a patient going home on the bus in NYC set of the radiation detectors as the bus passed through the LIncoln Tunnel. About 7% of patients go to a hotel instead of going home. In one such incident, nuclear plant workers set off radiation alarms when they reported to work. It was later found that they had stayed in a hotel where linens from an RAI patient were washed together with other bedding and then put back into use.
The International Atomic Energy Agency notes that when releasing patients treated with I-131, unanticipated alarms are possible, or even likely, by radiation-detection systems at international borders, airports, train stations, bridges, tunnels, and other areas. Therefore, if travel is planned within four months of RAI therapy, you should carry a form from the doctor explaining your condition.
There is a great website for patients about RAI therapy: ThyCa.org. It has a tremendous amount of information including low iodine recipes and other tips. They also have a humor page which includes a song to the tune of "Leavin' on a Jet Plane..."
All my bags are packed
I'm ready to glow
I'm standing here
Outside the door
With "Danger: Radiation!" on the sign
But the floor is covered
and so's the phone
the doctors hover
they're ready to go
already I'm so scared 'bout R A I
So kiss me and smile for me
Tell me that you'll call for me
Close the door, let's start this nuking show
'Cuz I'm stayin' in i-so-la-tion
Don't know when I'll be home again
Oh babe, I hate to glow.
Scripture reference: Genesis 2:18
Tuesday, September 4, 2012
The decision was difficult because it is the least aggressive form of thyroid cancer, they believed that the surgeon got it all, and the RAI can result in slightly increased rate of leukemia. Since I already have two cancers, that was a concern for me. RAI can also cause permanent changes to the salivary glands that result in dry mouth or taste changes. On the other hand, RAI is only absorbed and concentrated by the thyroid. The treatment destroys any remaining thyroid tissue or cancer cells but does not harm other tissue in the body. It increases the survival rate of thyroid cancer patients.
Bruce and I prayed and talked about it, did the research and went back in to discuss with the endocrinologist. I even asked him what he would do in my place and he said it was a difficult decision and that he could support either choice. We decided to proceed with the I-131(RAI).
First, they put me on what I defined as the "no-food diet." It is actually a low iodine diet, but who knew how many foods that eliminates! No dairy, no egg, no cheese, no soy, no processed food of any kind-no bread, pancake mix, canned foods, NO CHOCOLATE!! I can have any fruit (except rhubarb) and any veggie (except potato skin) and 5 oz of meat per day. Yikes! The only upside was the potential for weight loss. I have decided to will my body to science because after two weeks I lost ZERO pounds. How is that even possible? If they figure it out they can solve the energy crisis.
Scripture reference: Romans 8:38-39
Friday, August 24, 2012
Wednesday, August 8, 2012
Scripture references: Ecclesiastes 3:11; Hebrews 11:13-16; Philippians 2:13
Wednesday, July 25, 2012
- when you have a chronic illness, the administration of it is a part time job.
- you must be your own advocate and not trust the system to take care of you
Thursday, July 19, 2012
Tuesday, July 10, 2012
Wednesday, June 20, 2012
After my WM diagnosis was confirmed, my oncologist told me we would check my blood every three months to see how quickly the disease would progress. Because I was otherwise healthy and asymptomatic, there would be no treatment in the short term. He would see me in six months and, if my lab results remain stable, that interval might lengthen.
We were impatient to see the results from my first 3 month lab tests because they can reveal a trend line that might show how quickly my disease is progressing. My IgM is the factor to watch and it went from 2017 to 2051. That is considered stable, they don’t even begin to treat until it is in the 4000-6000 range WITH symptoms.
When my numbers continued to be "stable" (IgM 2145) at 6 months from the diagnosis, my oncologist canceled the next appointment. I was a little nervous to go a year without being seen, just after being diagnosed. I saw him again in March of 2011. As usual, I went in the week before to have my blood work. As usual, I checked online to see if the numbers were ready. Bruce was not planning to go with me to the appointment unless my numbers had soared to the point where treatment might be discussed.
I called the oncologist office to see if they had received the results. The nurse put me on hold and returned to tell me that they had. I asked for the numbers and she would not tell me. I explained that they had not posted to my chart online and I needed to know so my husband could decide whether to take off work. She put me on hold for a long time. When she returned she said that I would need to come in and the oncologist would discuss it with me.
My heart sank. I called Bruce and he was very distressed. He took off work and we went in together, both expecting dire news. It seemed like forever, waiting for the doctor. When he came in he said, "Wow, your numbers went down-IgM is 2008." I burst into tears while the doctor stood staring, perplexed. Bruce explained that when the nurse refused to give me the results, we both assumed the worst. The doc said, "that is why we don't ever give the numbers."
I told him I ALWAYS got the numbers because they are on my chart online. He said "you can see lab results ONLINE?? How do you do that?"
I did not have the confidence to dance backwards, trusting this partner to keep me upright. It was time to change.
Truly, we can make our plans but it is God Who guides our steps. In May 2010, I had an opportunity to attend a local meeting of the local WM support group. There were several well known WM experts who came and spoke to us. One of these amazing doctors actually practices in Seattle and my husband and I spoke with him. We were very impressed with his combination of passion and compassion and resolved to try and make an appointment.
Monday, June 4, 2012
I'm glad to have these intrepid explorers on my side.
Scripture reference: 2 Corinthians 1:9-10; 2 Thessalonians 2:16-17
Tuesday, May 29, 2012
When my husband works with me in the garden, he tries to be careful not to tromp on the plants. He asks which are my favorites so he can protect them, but he eventually has to point out that each one is “my favorite.” As I tend to my plants I’m reminded of the careful way God tends to those who belong to Him and the knowledge that each one of us is His favorite. God provides for all of our needs; I recognize His power in my life.
Giving the seminar was such a privilege for me. People were so receptive and gracious. One of their favorite stories was about the garden at Duffield, in South Carolina. This property was originally developed in the early 1900’s but at some point it was abandoned. The house became surrounded by overgrown shrubbery and invasive vines. Large trees still lay where they had been felled by Hurricane Hugo.In 1992, the property was purchased by a couple intending to renovate. They had been told that, decades before, it had been owned by a well-known Camellia expert who was renowned in the state for her knowledge and her collection.
As they began to clear away the debris and the underbrush, they happened upon a shrub with a single, eye-popping bloom. At that point, hope kindled that the incredible collection was still there, even after years of being deprived of sun and choked by the weeds. They hired a local designer who was familiar with the history of the property to assist them as they peeled back layer after layer of the overgrown tangle. Another Camellia was found, and then another; when finished, they had found and rescued over 100 beautiful camellias, originally handpicked by their loving owner, still flowering. It took years, but now the property has been restored to its original beauty and is featured on local garden tours.
I know I must periodically clear away the worries and the busy-ness of the world that threatens to choke out the Truth I’ve learned. If I let them, the worries-about my health, my husband’s health, my daughters and their families, my parents-will overwhelm me like those invasive plants taking over Duffield. Jesus says, “you are worried and bothered about so many things; but only one thing is necessary: to spend time with Me and listen to My words.”
Perhaps you heard and believed the Word of God when you were younger, but the pace and the stress of your life have all but silenced that faith. It is not gone! Just like the beautiful camellias at Duffield, the beauty and appealing gifts that God has planted in your life are still able to bloom if you clear away some of the weeds-the worries of the world and the striving-that choke them out. Your faith remains, in all its beauty, waiting for you to prune out the overgrowth and give it room to flourish. What can you say “No” to today, so that you can say “Yes” to Jesus?
Scripture reference:Matthew 6:28-30; Zephaniah 3:17; Luke 10:38-42
Sunday, May 13, 2012
I could never enumerate all of the things that I learned from you. In so many ways, you are a shining example of the Woman in Proverbs 31. You greatly enrich our lives; you always stayed busy, contributing to the family’s welfare. You took care of us in every way; you speak with wisdom and kindness. Your children stand and bless you; your husband praises you. What a blessing you are to us. I admire you and I love you so much.
Many hands make lots of tamales. When I was growing up, sometimes at Christmas my mom would gather her sister and all of the girl cousins to our house to roll tamales. Everyone would take home bags full of dozens of tamales that would go into the freezers to feed us for months. I learned that many hands make light labor-and a party to boot! A deeper truth: women need sisters. They might not be related, but we all need a group of women to love us.
If you are going to walk in the tall grass, carry a big stick. Mom was not a fan of snakes. When we lived in the country, her big stick rested just outside the door and when she went outside she made sure the snakes knew she was armed. They had a sort of détente going on. We would tease her about it, but I learned to be aware that there was danger in the world and it was my responsibility to prepare for it and carry my own stick.
When you are camping out, somebody’s got to keep the fire going. When I was in Girl Scouts, we didn’t camp in tents but in large rock shelters with a central fire pit. I noticed when I went to sleep, Mom was tending the fire. I noticed when I got up, Mom was tending the fire. She was not the only leader there, but she was the one who stayed awake. Mom taught me that personal sacrifice for the good of others was a character trait worth emulating.
Everybody has a story. Everyone talks to Mom. Relatives, her friends, my friends, your friends, store cashiers, complete strangers. Mom is always ready to lend a compassionate ear. Within 5 minutes of contact, Mom will have a person she just met downloading their life story into her sympathetic and capable hands. I learned that you don’t judge people for how they act in the moment; everyone has burdens to bear that sometimes overflow. Show grace when you can because you can be sure there will come a time when you will need it shown to you.
Bloom where you are planted. Mom actually had a plaque with this on it and it is a good description of how she lives. She has not always been exactly where she wanted to be, doing exactly what she hoped. But she always blooms wherever she is and makes it a nicer place for everyone who is there with her. If you cannot be happy with what you have, you will not be happy with what you don’t have.
Silence can say it all. Words can be highly overrated. Especially in stressful situations or where negative emotions threaten to erupt, silence can be the better part of valor. Much can be conveyed without words and with less misunderstanding. Mom was skilled at controlling her tongue. As the Bible says, “too much talk leads to sin. Be sensible and keep your mouth shut.” I can’t say I’ve learned this; I’m still trying to learn that just because I think it doesn’t mean I have to say it. Even a fool may be thought wise if they keep silent.
You can do anything if you must. Mom has always been a hard worker. At times, she has worked much harder than is actually possible physically. When my parents owned greenhouses and were famous for their incredible fern baskets, Mom’s green thumb and relentless supervision were the key to their success. When they expanded, Mom was spread way too thin. She suffered physically and emotionally as a result of the pressure. Mom just never gave up, no matter how tired or discouraged she was. What she did was impossible-but she did it anyway. That is the way we roll.
It is possible to swim without getting your face wet. As a youngster, I asked my mom what her favorite sport was and she said, “Wading.” Didn’t even know that was a sport. Mom preferred water to stay below her knees but she was willing to go in the deep end for us. I’ll admit, her form may have been a bit unusual, but I learned to be a good sport, to participate and not worry whether or not I did something the same way as everyone else. The important thing in life is to get from one side of the pool to the other, not what you look like doing it.
You can feed 5 people with one steak if you have enough beans. During our nomad period, when we took a family of five all over the country during three summers, we ate a whole lot of beans. We ate beans in 25 states. Not only did my parents give us the wonderful gift of travel and history, but my mom taught me how to nurture fellowship through food. Hospitality is not about the perfect table, the most haute cuisine or the finest wine. Hospitality is about caring for others, spending time together, making them feel valued and serving them.
Nobody can ever love you like a mom can. Although her authority was undisputed, my mom was my best friend. I always thought that I loved her and she loved me and we were equal there. It wasn’t until I had my own daughters that the truth became clear to me. No matter how much I love Mom, she loves me more. No one loves like a mom loves, there is no substitute. Mom nurtured me, lectured me, supported me, challenged me, doctored me, praised me, and backed me all the way. She always protects, always trusts, always hopes and always perseveres. That is love. That is Mom.
Happy Mother’s Day!
Thursday, April 19, 2012
I was pretty sure that I would not be able to handle that. I asked my oncologist about the shingles vaccine, Zostavax. I explained about my dad and about my dread of contracting shingles. He said I should ask my primary care physician. My PCP pointed out that no one with a compromised immune system should take the vaccine. I told him that the oncologist said my immune system was uncompromised, so my PCP agreed. He suggested I contact my insurance company and confirm they would pay it since I am not yet 60 years old. He provided an Rx; the vaccine is not given in the clinic but by the pharmacist.
The insurance company confirmed they would pay 100% if ordered by the doctor. I told them I had the order and just had to go to the pharmacy to receive the shot. Oops. No, they would not pay at all if the shot is given by a pharmacist. I contacted the clinic and was told that one of their locations had nurses giving the shots one day a week and would bill them as medical (not Rx). When I called for an appointment they said they had been out of Zostavax for a month and it was still backordered.
My gynecologist practices in a different clinic, so I called them and found that they give Zostavax in the doctor’s office. Hurray! I explained that I had an order from my PCP, but that he did not work for their organization. They told me, no problem, a doctor’s order is all you need. I said it is actually an Rx and they said that will work fine. I made an appointment to come in to the shot clinic.
Meanwhile, I’m reading all the information I can find online and continue to see warnings, including that you can still get shingles after receiving the vaccine. I kept thinking, I don’t really want this vaccination, but I want shingles even less. I’m starting to have second thoughts, but then I think about my dad. I feel that I must do it before I lose my immune system and no longer have the option. The closer I got to the appointment the less courage I felt. It took everything I had to show up that day.
In the waiting room, my turmoil had plenty of time to multiply. When I am finally able to hand over the Rx, the nurse says, “This doctor doesn’t work here. I can’t give you this shot.” I explained how I had called in and I was told there would be no problem, but she was unmoved. I asked to speak to the head nurse; I had to wait, again. When I began to tell her my story, I burst into tears. Nothing would avail but an order from one of their own doctors. I gave them the name of my gynecologist but she was out of the office so I left.
My gynecologist wrote an order and I went back the next week and did it all again. This time I received the vaccination. I went out to the car and cried. I guess there’s just no pleasing some people.
Scripture reference: Psalm 94: 18-19
Monday, April 2, 2012
They were right. On 3/31/2010 my husband once again accompanied me to the oncologist. He told us that I have WM but that as long as I am asymptomatic we won’t start treatment. That was very good news indeed. My dad has endured some unpleasant treatments-worse, I think, than the symptoms.
Dad was first diagnosed with MGUS (Monoclonal Gammopathy of Unspecified Significance) and his doctor monitored his blood work for two years before he was diagnosed with WM. At that time, his IgM count had dramatically increased and he was experiencing symptoms-most troubling was neuropathy in his legs and feet. His doctor advised using CHOP as the first line of treatment. (Cyclophosphamide, doxorubicin/ Hydroxy-doxorubicin, vincristine/Oncovin and Prednisone)
Dad said that he was pretty much incapacitated by the chemo and was surprised by the severity of the side effects. He was so weak that he could not walk across the front yard to get the mail from the mailbox. He began by walking a few feet inside the house, many times a day, until he could walk the complete circle from den, through the breakfast room, kitchen, foyer and back to the den. It was a long time before he was able to walk around the block again.
I remember being overwhelmed with sorrow when Dad told me that he did indeed have incurable lymphoma. I have had the opportunity to travel to Texas and participate in his care as he has walked his path. The first time was very hard; they lived about 40 minutes north of the town where their doctors practiced. We made several midnight trips to the emergency room and I spent many days in the hospital with him. It was never easy to see Dad in such a situation, but over the years it did get less hard as he persevered and we followed his lead.
I do not believe that God “gives” people cancer. Along with everything else that is dark, terrible and evil in this world, it is a result of the fall. When presented with the choice to obey and trust God or do their own thing and gratify themselves, Mankind chose wrong. God designed the world to be perfect, but sin and death entered and wrought havoc. However, God can and will use anything, even cancer, to bring about our good and His Glory.
It is amazing how God so carefully and lovingly prepares us for what we must face. I am still sad that my dad has to endure this cancer, but I am so thankful that he has given me an example to follow. I am a timid person and I tend to fear the unknown. My dad has blazed a trail for me with courage and wisdom. He has shown me, “You can do this, God will be your refuge. Go step by step, trusting God; He will give you light for the step you are on. Present your fears to God and His peace-the kind of peace that cannot be explained-will be a fortress around your heart. This is the way to endure and this is the way to walk.”
Scripture references: Romans 5:12; Romans 5:17; James 1:17 ; Romans 8:28; Psalm 18:30; Psalm 119:105; Philippians 4:6-8
Wednesday, March 14, 2012
Bone marrow has a fluid portion and a more solid portion. In bone marrow aspiration, your doctor uses a needle to withdraw a sample of the liquid. In a bone marrow biopsy, a larger needle is used to take a sample of the solid part. In my case, both procedures were done at the same time.
These procedures aren’t terribly risky; rarely, complications may result such as breaking of needles within the bone, which may cause infection or bleeding, long-lasting discomfort at the biopsy site or issues related to sedation, such as an allergic reaction, nausea or irregular heartbeats. I tend to be timid; lucky for me, the docs here believe in conscious sedation for this procedure. My dad has had it done twice, in the office with local anesthetic, but his pain threshold is of family legend.
Leading up to the day, I had some mixed feelings; I was anxious about the procedure itself; I was concerned about the results; I wanted to get it over with. My subdued but mixed emotions lasted until we got to the second floor of the hospital to Infusion where I began to feel dismay. The rooms and equipment immediately took me back to sitting with my dad while he endured whatever treatment the doctors prescribed. Once we were checked in and in our own room, I was feeling a bit overwhelmed. The nurse asked me if I have a living will, which is something I suppose I need to think about. They found that I was missing a CBC within the last 14 days and had to redo it, which added another 45 minutes to our wait.
My husband is a great caregiver; he kept me entertained and encouraged as we waited. It makes me cry to think about leaving him. I thank God that he is a believer in salvation through Jesus Christ and that whatever happens to him or to me, we will be together in eternity.
Finally they took us down to the procedure floor. I met the doctor who was to perform the biopsy. I liked him a lot; he carefully explained each and every step he’d be taking in simple, brief language. Basically, they administer the conscious sedation; the area where the doctor will insert the needle is confirmed using x-rays, then marked and cleaned. The bone marrow fluid and tissue sample were to be collected from the top ridge of the back of my left hipbone (posterior iliac crest).
In the procedure room, the team members were gentle and efficient as they moved me over to the table. I had to flip to my stomach-the procedure table is long, but very thin. Once they started the sedative, I was out cold and didn’t feel a thing. Next thing I knew I was waking up, back on the second floor, with my husband nearby. The sedative caused some loopiness and nausea, but nothing severe. In fact, the loopiness may be innate. When they released me, I walked out to the parking garage on my own steam.
At home I went straight to bed to sleep off the sedative. After that I treated the discomfort with ice packs and Tylenol. It’s no worse than a common back ache-even for a pain weenie like me. Just a heads up; if you go through this and decide that watching a nice movie would be just the thing to take your mind off the heavies-don’t watch “Up”. It is a lovely animated film, but the preamble is a fast forward zoom through the life of a loving married couple that ends with the death of the wife. Who knew?
Scripture Reference: Romans 10:9-10
Thursday, March 1, 2012
While we were waiting at the Cancer Center, I watched as lovely women came and left with all sorts of headdresses covering their baldness. I had to fight back the tears-so much bravery in such a small room. The nurse took us back, checked my vitals. The doctor came in to speak with us then examined me. I think he was looking for bone pain, spleen or liver pain and neuropathy or weakness.
He ordered more blood drawn to determine the level of IgM in the blood. The diagnosis can’t be made with certainty from blood tests, so we scheduled a bone biopsy in 10 days. If inconclusive, then a skeletal survey (x-rays of the skeleton) would be taken to help distinguish between WM and a similar plasma cell cancer, multiple myeloma. MM would be a worse diagnosis. The best case is MGUS: monoclonal gammopathy of undetermined significance-a benign condition in which there is a higher-than-normal level of IgM protein in the blood. Patients with MGUS do not have cancer, but are at an increased risk of developing cancer. This would be the diagnosis if tests do not prove either WM or myeloma.
As we left the Cancer Center, I was drained. It is a lot to process. Does it get easier or harder to handle? Once home, I began the phone calls. I called my girls, my parents, my brothers, to let them know about the appointment and the next steps. How hard it was to tell them! My dad feels guilty; although it is no fault of his if I received some genetic predisposition to this. What could he have done differently? I know he can’t help feeling this way, I will feel the same if it shows up in my girls. My mom is fragile; it was harder to tell her. She took it bravely but was struggling. My brother has a tender heart, and he was caught off guard. His concern made me feel loved.
My latest lab results came through while I was on the phone. The test “Immunoglobulins A-G-M” showed: “IgM, Serum 2016 Normal is: 48 - 271 mg/dL” Seems pretty high. At this point, it would be a relief to find out I have WM and not myeloma. My husband found an article dated 5 months ago that cites a recent study that found “only 21% of patients with asymptomatic WM eventually required therapy with a median follow up of 8 years. “ (Clinical Advances in Hematology and Oncology; Volume 7, Issue 10 October 2009; page 680.) That sounds very encouraging.
My thoughts were tumultuous. What will it mean if I have cancer? What else has God prepared for me to do here, before I go? What is the best use of my time? How much time do I have? How will it affect my loved ones? I have a husband with serious health issues; will I be able to take care of him? I have a daughter in Texas; I have a daughter, son-in-law and granddaughter in North Carolina. I have elderly parents 2500 miles away. Will I still be able to travel to see all of them? Will I get to see my daughter married? Will I get to see my granddaughter grow up?
How can I help to prepare them so that they see my going as something to be desired and anticipated? How can I help to prepare them to feel the same way when it is their time? This world is not our home; we are strangers here. When we get to heaven, then we will be home. God says that the great heroes of our faith considered themselves foreigners on earth and desired not their own country but rather a better one, a heavenly one. Therefore He is not ashamed to be called their God, because He has prepared a city for them. I’m asking God to give me a longing for my heavenly home.
Scripture reference: Hebrews 11:12-16
Wednesday, February 22, 2012
She ordered a repeat ESR and an electrophoresis. The ESR was up to 65 and the electrophoresis interpretation was “AN ABNORMAL PROTEIN BAND IS DETECTED IN THE BETA GLOBULINS AND MAY REPRESENT A MONOCLONAL IMMUNOGLOBULIN OR LIGHT CHAIN. THE GAMMA GLOBULIN APPEARS DECREASED.”
Well, I’m not a doctor, but I have walked with my dad through this and I recognized the term “monoclonal immunoglobin.” My dad has Waldenströms macroglobulinemia (WM) and it all started with similar test results. The exact cause of WM is not known. However, scientists believe that genetics may play a role because the disease has been seen to run in families. Waldenströms is a rare type of slow-growing, non-Hodgkin lymphoma-that is, a cancer that begins in the cells of the immune system. It causes overproduction of a protein called monoclonal immunoglobulin M (IgM) antibody.
The rheumatology nurse called and said I need to get into a hematologist pronto. She made an appointment for me for the following week at the Cancer Center. Wow. This all started with vague symptoms and a slightly elevated sedimentation rate and now I’m headed to the Cancer Center. My dad was not diagnosed until he was 80. I felt kind of shell-shocked. As is my custom when I am upset, I started talking to God about it.
I asked God to make me strong; more than anything else, I want Him to be proud of me. I asked Him to use my situation, whatever that turns out to be, as a catalyst to move people toward Him. I want to be more intentionally open to others about my love for Jesus and what He has done for me. Every other religion requires you to do the work and pay the price in order to be “acceptable.” Christianity is the only religion where God Himself paid the price required in order for me to be accepted. I asked Him to be glorified in my life. I asked Him, when it is time, to empower me to die well: honoring Him and loving people.
People would ask me, “How are you holding up?” and I’d surprise both them and me when I’d say, in all honesty, “So far, I’m fine.” I guess I am able to put off anxiety until I know for sure. FINALLY-my tendency to procrastinate has a purpose- I’ve been waiting a long time for that to happen. God has been with me through all the high points of my life, and through all the valleys of despair. He has never deserted me; He has always brought me through to a better place. Why would I doubt Him now?
My husband, my daughters and my friends have all been praying for me and I know that God is allowing them to participate in His work in my life. Every once in a while something will ambush me-words of a song, a photo of my granddaughter, a hummingbird at the feeder-and I tear up. But most of the time I feel peace-a peace that is not really consistent with the circumstance I find myself in. When I’m in that place of peace, I realize that I’m in a win-win situation; if I die now, I get to go be with Jesus. If I don’t, well, I still get to go be with Jesus, I just need to wait a little longer.
Scripture reference: 1 Peter 3:18; Romans 5:10, Colossians 1:21-22
Read my father’s blog: http://georgefield.pathiwalked.com/
Sunday, February 19, 2012
Like my grandmother, I am a gardener and I tend a large garden. My husband built it, a lovely series of raised beds and terraces flowing down a hillside. It is a joy and a privilege to have this vast playground in which to experiment, labor and create. I’m afraid my other responsibilities have sometimes been shirked during the season as I would spend 8 hours of the day out there immersed in the beauty and the demands.
Being in the garden can be a spiritual experience. It is hard for me to separate gardening from God; He is everywhere I look. God tells us that His invisible qualities-His eternal power and divine nature-are clearly seen, being understood from what He has created, and so it is. From the intricate beauty of individual flowers, to the power of the windstorms, to the green nubs of perennials that poke up in early spring promising renewal, God’s incredible creativity and His authority over His creation are constantly demonstrated to me.
Late winter is, counter intuitively, a busy time for a gardener here in the Pacific NW. Leftovers from last year which remain for the benefit of the birds or perhaps for winter interest must be trimmed back. The beds must be cleaned and tidied up in preparation for a blanket of mulch. The mulch will moderate temperature fluctuations in the soil as we head into spring and avert the takeover being planned by shot weed lurking in the shadows. We use about 20 yards of good compost to make a 3-6” blanket over all our beds.
I am not someone who enjoys exercise, but I love gardening so much that I use an elliptical in the off season so I’ll be ready for late winter. In January of 2010 I noticed that, despite my resolve to stay fit, I was moving very slowly. I was only able to work a few hours a day and then I’d be exhausted. I presumed that in a month or so I’d have gotten back into shape and up to speed.
Instead, the fatigue continued and I noticed that I was having a lot of joint pain, especially in my hands, wrists and-most annoying-elbows. I coincidentally had a conversation with a friend, a Master Gardener, who had been recently diagnosed with rheumatoid arthritis. She mentioned that the symptom that drove her to seek a diagnosis was pain in the elbow joints.
I visited my doctor for a physical and explained about the fatigue and joint pain. I have a history of infrequent migraines, but I’d been having some headaches that were different-sort of localized, severe but short lived and recurring. He ordered all the standard lab tests and I asked him to include a rheumatology panel-just to eliminate the possibility that I had RA or some other joint pain disorder. It turned out that my sedimentation rate (ESR) was elevated-although not dramatically. Zero-20 is considered normal; mine was 50. An elevated sed rate can mean almost anything-inflammation from a cold, overworked muscles-or auto immune disease.
My physician was not concerned about the sed rate but he is very collaborative. My daughter is an MD and she felt that since I was over 50 years old and I was also having unusual headaches that I should take the time to see a rheumatologist and rule out temporal arteritis. So, I obediently made an appointment with the rheumatologist for 3/02/10.
For pictures of my garden see my garden blog: www.susiesgarden.com
Scripture reference: Romans 1:19-20