The Waiting Game

I didn't hear about the tornadoes in Virginia until late last night, but once I did, I couldn't sleep until I knew Dawn and Emma were OK. My son Steve is often out on his Naval ship, while his wife and daughter are home in Suffolk. Yesterday afternoon, three tornadoes tore through southeast Virginia destroying homes and injuring hundreds. When we finally spoke to Dawn, she said she and Emma were on their way to Wal-Mart when they saw cars whipping past them in the opposite direction. She was bewildered until she looked ahead of her and saw the enormous grey cloud. She immediately turned around and drove to her neighbor's home, who is an EMT, and ran inside with Emma, leaving her car running and its doors open. They waited inside, frightened, while the tornado touched down two blocks from their home. The damage left behind is devastating. Houses in their neighborhood have been obliterated, but Dawn said she was thankful the tornado came while most members of the families who live in those houses were at school or work. While the twisters caused a legion of injuries, they did not cause fatalities, and I am so grateful for that. Please pray for the people in Virginia affected by these tornadoes.

The past week has been difficult for me. It reminds me of the beginning of this process, when all we knew was that I had cancer, but we had to wait and wait for any more answers. We're back to testing and waiting. I had my PETscan done yesterday, but I won't get the results for days. I am not very good at waiting. I find myself jumping to conclusions and self-diagnosing. In that way, this blog has been very good for me. As I look back at posts where I tried to guess what was going on with my cancer, instead of waiting for those answers to be provided, I was almost always wrong. I have to laugh when I see that, and it helps me not get worked up about the horror stories I read on the internet as I research the possibilities. One thing I've heard from Dr. Segota and from my internet research is that with growing bone cancer comes growing pain. That is my biggest concern at the moment. I am not very brave in the face of pain. Please pray that God will quiet my anxieties. I know He has a plan for me, and answers for every worry I have. I need His help to rest in that knowledge.

One way I've been helped through this unpleasant waiting period is by my dear friends. For almost thirty years I have had a circle of friends who have become my Florida family. We call ourselves the "dinner club" and we have seen each other through the best and hardest of times. I have always had a soft spot for anything I like to say is, "so ugly, it's cute." So about a dozen Chrismases ago, when I couldn't afford a Christmas tree for my house, the dinner club showed up with the most misshapen, gawky, adorable pine tree I've seen and said they picked it especially for me. We have stuck by each other through thick and thin, and they are again here for me at the drop of a hat. As the years have gone by, some members of the club have moved, remarried, or had changing circumstances that have made it so we don't get together as often as we used to. But when I called to say I needed a reunion this weekend, everyone showed up. Here we were, passing around pictures of grandkids that are the spitting images of the kids we had when we all found each other thirty years ago. We invested so much time and love in everyone's families, it was wonderful to hear updates on all the kids now. The great thing about old friends is you don't have to say much for them to understand what you're feeling. We get each other - even if it's been a while. So we talked about my cancer a little, but I didn't have to say much because I knew they were right there with me and they will continue to be. Special friendships like these are some of God's greatest blessings.

Another group of friends that has blessed me is our Bible study group. It has been a while since I have been involved in one, but in divine timing, they called to invite us into the study just as Bob and I were learning about my diagnosis. It has been a wonderful time to build new friendships based on our relationship with God. One of our friends from the group and a fellow Wisconsonite, Buzz, treated us to dinner last night which was a wonderful distraction from the waiting period I'm struggling through. Buzz is a particularly inspirational friend for me because I know the Lord has seen him through incredibly hard times. Hearing his stories reaffirms my faith that if he can endure hardship, I can too.

I am again feeling a little unfocused and unmotivated to do the things I love. It's all part of the up and down cycle of this trial. I think it has a lot to do with my difficulty in waiting for answers from the PETscan. It's hard to get excited about a project when I feel like I'm in limbo. My mind is tired. One of my good friends knew a woman well who received my same diagnosis around the same time as me, but chose to forgo treatment. She has already passed away. That puts things into perspective for me. I don't spend a great deal of time thinking about the severity of stage 4 cancer, but now and then I am reminded of it. It takes a great deal of energy to fight off a disease this big, so if I need to spend a few days in bed from time to time, I'll take them. I am always praying that the Lord will give me strength and restore my energy for the continuation of my treatment so that I can continue to live for His glory whether He gives me months or dozens more years on this earth.

A surefire way to lift my spirits when I get a little down is a visit with the grandkids. I get lonesome for their hugs and kisses, so yesterday I took everyone out for ice cream. Then we headed back to John and Shannon's home to see their new butterfly garden, play in the hose water, and goof around.

The Verdict is Still Out

We met with Dr. Segota this morning to learn the results of yesterday's tests. The CTscan showed that the cancer in my lung is stable, meaning it's the same size or slightly smaller. The same is true for the cancer in my lymph nodes. This is really good news! The progress in my bone is a little less clear. Originally, the cancer in my spine and pelvis was detected by a PETscan of my torso and MRIs of my head and spine. Yesterday, they performed a bone scan to gage the size of these cancer lesions. The results of the bone scan gave Dr. Segota suspicion that these lesions have grown, but it's hard to know for sure since I didn't originally have a bone scan, so she is comparing the current bone scan to an older PETscan. She could make a more accurate judgment if she was comparing the same test, so I am having another PETscan on Monday afternoon. That way she can look at the results from both PETscans to determine if the bone cancer has grown or is stable.

My next chemo treatment was scheduled for Tuesday, but it has been postponed until we know the results of my new PETscan. If the bone cancer is stable, we will continue the same chemo plan I was on. If it has progressed, we will have to discuss other options. The one Dr. Segota mentioned to us today is a clinical study that 10% of people in my situation are eligible for. For those who qualify for the study, it has been 90% effective. We set up another oncology appointment for next Thursday, so hopefully that is when I will have more answers.

I see the effects of your faithfulness in uplifting me to God everyday, and I am incredibly grateful. James 5:16 says, "The prayer of a righteous man is powerful and effective," and your prayers on my behalf have been both, so please continue your support.

Test Day!

Well I’m radioactive folks! This is my big day of retesting, so at 9:00am I came to the hospital to get a shot that will make my skeleton light up in a bone scan. It needs a few hours to work into my system, so Mackenzie and I are just wasting time at Denny’s, Einstein’s, and the hospital waiting room until 1:00pm when the bone scan is scheduled. The CATscan of my chest is set to follow at 3:00. I have an appointment with Dr. Segota tomorrow morning where we will discuss the results of these tests and the continuing treatment plan we will follow.

A lot of people have been asking me if I’m planning to take a long cruise, or to travel around the world gazing upon famous sites. I guess they’re asking what’s on my “bucket list,” just in case. The truth is, I’m not making any of those plans. There are a few things I’d like to experience, but nothing crucial, and I think that’s because I’ve tried to live my life as a “yes person.” I’ve always told my kids, if the opportunity for any kind of adventure comes up, let your first response be yes! If you go through life first thinking, I can’t, or I shouldn’t, you could end up with a heaping pile of regrets. First think, yes, I could! Then, see if there are any reasons why you shouldn’t. If there are, you weigh the pros and cons and make your final decision, but if there aren’t, you go for it! I think it’s important not to count yourself out from the start. My sister Jeannie had the same “yes” attitude, and even after learning she was terribly ill, she never counted herself out and continued to have adventures even in her final months. She hosted parties, went to lunch every Thursday with her family, kept working Friday nights at the restaurant she loved, planted trees, and went to Disney World. In fact, at Disney World, she got bad chills and had to spend ten hours in the hospital. Then, she checked out of the hospital and went to Cirque de Soleil! She was responsible about her cancer, but she wasn’t going to let it stop her. I don’t really relate to the phrase, “Live like you’re dying,” because I don’t think it takes that kind of focus on finality to enjoy life. Instead, I prefer to, “live each day as a gift from God,” because I fundamentally believe that is true. I don’t think we need to wait until we receive some morbid news from the doctor to start jumping headfirst into adventure. I think the adventure starts much earlier than that, and if you live that way, you don’t end up in a mad dash to get the “bucket list” done.

I am eager to hear the results of these tests tomorrow morning, whatever they may be. Again, I’m not fearful of any possible news because all control in this situation is in Better Hands than my own. I feel a great freedom in knowing God has already appointed the exact time and cause for my death long ago, so I don’t have to worry about it. It could be because of this cancer, or it could be something I can’t even imagine years from now, and it’s not my job to figure it out! I just get to live the daily adventures He gives me until the perfect moment He has planned to bring me home to Him. Psalm 139:16 says, “All the days ordained for me were written in your book before one of them came to be.” In our Bible study, we’ve been discussing the majesty of God. It’s really a daunting subject to even begin to wrap my mind around. He is a God that is not only large enough to create all things, know all things, control all things, and be all places, He is also a personal enough God to have carefully planned each day of Jayne Kaminski’s life and walk her through each one of them. It is astounding. He knew me before I knew me. He has decided I matter to Him. I matter so much that He spends as much time with me as I need. The days I can’t get out of bed, He stays with me. He reveals more and more of Himself to me. And for what reason? I know for a fact that I did nothing to deserve the attention. It is all because He is so majestic and unsparing in His love. My cup runneth over.

Annabelle loves the dresses I’ve made her because they have enough skirt to be perfect twirling dresses. Unfortunately, we haven’t gotten her to stop twirling long enough for a picture. We’ll keep trying though!

A spring in my step :)

I am still surprised at how drastically my health can change from day to day! I have spent the past week pretty exhausted, listening to CDs or reading in my room. My daughters and grandbabies came by to visit me and we would sit on my bed to talk or play, maybe go downstairs for a meal, and then it was back to bed for me. But today Mackenzie thought I had lost my mind when she got up and was preparing to bring me breakfast in bed like usual, but instead found me fully dressed in the kitchen getting things together to head out for the day!

All of a sudden, I feel back to myself. It's not just having more energy, it's my overall mental outlook too. I had been suffering from a bad case of "chemo brain" lately. Yes, that's a real thing. It's a phenomenon of mild cognitive impairment that doctors and patients have noticed occurs during cancer treatment. No one has really pinpointed why it happens or a solution for it, they just know it happens. I've always been a talker, but lately I found myself having absolutely nothing to say. Literally! I would sit there and try to come up with anything, but not a single thought would come to mind. Bob joked that meditators train years to achieve the clear mind I was complaining about. Not only was my mind a blank, but I also had a lack of enthusiasm. Even the stuff I usually loved to do didn't seem exciting to me. It was really a rather dull way to be.

But today is a whole new ball game. Mackenzie and I went to JoAnn's Fabrics to pick up some threads and buttons to match material I had to make Annabelle some dresses. I came out with enough fabric to make her at least eight more outfits! Everything was just so cute! And I felt excited about sewing again! I've been cutting out patterns all afternoon. We also got plants to fix up my front garden, which I haven't really cared about improving in weeks.

I went to see my physician Dr. Groene yesterday. Appointments with her are invaluable to me because she is a caring friend and a survivor of severe breast cancer, so she offers me answers and advice from first-hand experience. I was so relieved to finally have one of my most plaguing questions answered! Although I've been eating well and taking good care of myself, I have been growing steadily bigger throughout my torso without gaining any actual weight, and no one could give me a reason why. They just kept telling me it had nothing to do with my cancer. Dr. Groene finally explained to me that it is a side effect of the steroids I receive with my chemo. Of course, this makes perfect sense! Maybe if I started lifting weights, I could become a body builder in the next few months instead of just a rounder version of myself. I felt like a weight had been lifted off my shoulders after spending some time hearing about Dr. Groene's experiences with cancer and chemo and realizing I am completely normal.

Hopefully I'll get a few darling dresses made for Annabelle by the next post, so I can add pictures of her in them!

A Time for Everything

As you read in my last blog, I had another chemo treatment on Tuesday. This time around, I have had less pain, but more fatigue. Tuesday and Wednesday went as expected with a good amount of energy and few side effects. Thursday is usually when things set in, and this time was no exception. The difference was that I was so tired, I had to spend the entire day in bed. I was thankful Bob and I had bought the Bible on CD so I could listen to the gospel as I dozed on and off. Friday was more of the same, but by Saturday I had some energy back. In true spring fashion, we deep-cleaned the back porch through a family effort. Then Shannon hosted another family dinner. Bob and I went home early to make sure I didn't overtire myself, and we left my kids to an evening of board games. Plus, I know enough to not be around when their mother's competitive streak comes out!

As I spent the end of last week in bed, I read some of J.I. Packer's book "Knowing God." Bob and I are blessed to be part of a Bible study that is working through this book. In my reading, I found a quote that touched me personally and set me thinking. "He seeks the fellowship of His people and sends them both sorrows and joys in order to detach their love from other things and attach it to Himself." What a complex and purposeful God. I have seen God carry out this method of bringing me to fellowship with Him numerous times in my life. As some of you may know, about a dozen years ago, my world was flipped upside down. I went from never having to worry about money to having absolutely no money to worry about! Suddenly, the command of Matthew 6:19-21 became very real to me. "Do not store up for yourselves treasures on earth, where moth and rust destroy, and where thieves break in and steal. But store up for yourselves treasures in heaven, where moth and rust do not destroy, and where thieves do not break in and steal. For where your treasure is, there your heart will be also." I relearned that no security is promised here on earth except that we can trust in the Lord to provide for our needs, so I asked Him to do just that. And He has absolutely never failed me.

God has recently detached me from many things I took for granted until this point. One of them is time. I have again been reminded that my time is not my own, but a gift from the Lord. And instead of an upsetting discovery, this has been freeing! I can go with the flow. My "to-do" list has moved from the front of the fridge to the side because the things I want to cross off my list can no longer be the first priority in how I spend my time. These minor tasks are not urgent anymore. If a friend or family member decides to drop by unannounced, it's a blessing, not an interruption to my day because I didn't have any ownership over my time anyways. So it is easy to accept when I see God has decided I'm going to spend my time differently than I might have thought.

Another thing God has detached me from is my love of accomplishments. I really love to do things and do them extremely well. There's nothing really wrong with that, but it becomes a problem when it is so important it affects my happiness. I can't do as much as I used to, I can't make as much as I used to, and God is teaching me to be content with that. I am still proud of what I can do even if it is less impressive than what I used to accomplish. I have learned that I am in a new phase of my life and my definition of "accomplishment" has had to evolve. Now wrapping a few gifts and putting cute tags on them is as much of an accomplishment as when I used to paint elaborate designs on furniture.

While these shifts and changes in my life have taken some time to adjust to, some have been much easier to accept. For example, after almost five decades of shaving my legs everyday, I can finally take an in-and-out Navy shower! No razors. No shampoo. Just soap down and rinse off. It's great!

Sunday morning Bob and I shared a cup of coffee on our spotless back porch, and I found myself tearing up. Bob went inside and brought me back a Kleenex so I could shed my few tears and talk about what was on my mind. A couple minutes later, Bob's cheeks were wet, so I went in to grab a Kleenex for him. Pretty soon we decided we might as well bring the whole box of tissues out with us while we discussed all we've been through and may still go through in this period of our lives. Besides the obvious trial of my cancer, I am also dealing with the recent deaths of both of my parents and my sister. Changes started coming at us so fast, I never had much time to grieve. I really miss them. When people die who have known you from the moment you were born and even earlier, it feels like a piece of your history dies with them. I'm never going to get to hear Teachy tell the same stories he's told thousands of times about my childhood again. There's no one around who was there. No one who actually remembers those things happening. Just the memory of his tales. I miss my sister's "go-go-go" energy. Even in her sixties she could still out-party the teenagers. She could never understand why everyone around her kept getting so old. She still wanted to go out dancing! I couldn't understand it either. Who can stay up past midnight after they hit forty? I am glad to see my mother's strong-willed nature in myself and in my kids. Mother could drive a person crazy repeating herself till you agreed, and I'm sure we all drive people crazy too. But she taught us not to back down. I am thankful for her strength and determination in our blood. It has carried us through many hard times.

I also miss my pastor, Dr. Kennedy. He irreversibly changed my life, and I miss his friendship and guidance.

I am still waiting to hear from the nurse who will schedule my tests to see how the chemo has worked. They will probably be at the end of this week or the beginning of next. Please continue to pray for me! God bless!

Remembering His Promises

Back in chemo today, and I've become much more comfortable with the process. As I'm entering this third cycle, my outlook has changed. The first round was scary because despite all the information I was given before starting treatment, the side effects I felt were not at all what I expected. When these surprising results assailed my body all at once, it felt like I was being assaulted not only by my disease, but by its treatment. That was when I had the breakdown and sat crying in my oncologist's office. Now my expectations and my perspective have evolved. I know basically what is coming and how to prepare for it. I know which days in the cycle will probably be my good days and which will be my bad days, so it is not as upsetting when I experience pain and fatigue. I know that it will pass in a matter of days, and I just need to listen to my body and rest. This way, cancer does not control my entire existence, it is simply a change in my life that God has helped me adjust to. In fact, it reminds me of the changes you have to make when you're having a baby or you are going to have a visitor for a while. You need to keep it in mind when you make plans, it affects some aspects of your life, but it certainly doesn't stop your life. You continue on doing the things you enjoyed before, but you just take this change in your life into consideration as you live.

Just now as I received my chemo infusion, I recognized a fellow member of my church and Westminster Academy mom, Linda. She is here with her son Justin, who is also a patient of Dr. Segota, for his 16th and final chemo treatment. Praise God! Linda offered the encouragement that God is playing an active role in every moment of my day. He will personally see me through this time, and has given me many promises in His Word I can cling to. In fact, as we spoke about chemo specifically, she quoted parts of Mark 16:15-20 which offers many promises to His believers, including, "When they drink deadly poison, it will not hurt them at all; they will place their hands on sick people, and they will get well." It is amazing how God never forgets my need for fellowship, support, and encouragement.

I had another appointment with Dr. Segota last week where we discussed the pain I've been having after my Zometa infusions. Zometa is a drug I have been getting every four weeks to prevent bone lesions since the cancer is in my spine. I usually experience severe pain through my legs and feet after these treatments. Since the chemo is every three weeks but the Zometa is every four, my days of bad side effects don't sync up. Once I'm finished with the hard days resulting from my chemo, I have to go back to the hospital for Zometa followed by those painful days. Dr. Segota said we'll skip the Zometa this cycle, since the cancer is in my short bones rather than long bones, which makes it not as imperative as it could be for me to take this drug. We are going to try the Zometa again on the same day as my fourth cycle of chemo so that hopefully all the side effects of the chemo, Zometa, and other drugs will come in the same few days, which will allow me more days of feeling well afterwards. If this works, we will probably switch my Zometa regimen to every six weeks so that it coincides with every other chemo cycle.

Dr. Segota also told us that we will redo my CATscans during this cycle of chemo, so we can judge what progress has been made. She said even if the tests show that nothing has changed, this is good news. We are trying to slow down the spread of the cancer as much as possible. These tests will be performed in a couple of weeks, so please keep those results in your prayers specifically. Linda offered me another verse as we talked that I know will strengthen me as we wait for answers. Psalm 112:7 says, "He will have no fear of bad news; his heart is steadfast, trusting in the Lord."

Bob's mother Bea was planning on visiting this past weekend, and we were very disappointed to find out at the last minute she couldn't come because of an unexpected issue with her hearing aide. We always enjoy seeing her and were looking forward to spending time with her. Since Bob had already planned to take Friday off work, we decided to drive to Naples and spend the weekend relaxing together. We love to visit the older neighborhoods of the Gulf Coast to shop, eat great food, and enjoy the view. It was just what we needed, and we both felt rejuvenated after the short trip.

Thank you for continuing to uplift me through your comments and prayers. I am truly blessed.

Life's Continuum

It's been some time since my last blog, but I was glad to leave my Easter thoughts as the last entry for a while. It's always encouraging to remember God's goodness and grace to His children. This morning provided another perfect opportunity for these thoughts as the rain pounded on the roof and my new curtains were drawn shut. Lately, I lay in bed after I wake up and replay my life in my mind. I pause on the multitude of good times and smile at how God has taken care of me. I remember really special, romantic times, like when Bob and I were dating, and my office desk was always adorned with a vase of fresh flowers. I remember silly things that made me happy too, like when I had that one really good refrigerator! I don't get fresh flowers as often, and that refrigerator is long gone, but those joys have been replaced by new ones like the Post-it note Bob leaves for me every morning before he goes to work with a personal message for my day, or calls from one of my four grown kids to check on me, or homemade cards for Gram from Annabelle.

When I first learned of the seriousness of my cancer, I was filled with worry for my family. I honestly didn't know how they could go on without me. I am immensely important in the lives of my husband, my kids, and my grandkids. I guess since I am so involved with them everyday, it was hard for me to imagine what life would look like without me. But as I spend these mornings looking back on my life and seeing how God has provided and cared for me, He comforts my soul. My fears are alleviated knowing that He will look after my family just as He has looked after me. Even if I can no longer be with them, God will never leave them. He has promised in both Deuteronomy and Hebrews, "I will never leave you nor forsake you." They are in good hands. And as I watch the love and loyalty between each of them, I know that they will also always be there for each other. I am proud of the close-knit family God has created here, and it soothes my fears to know I can trust God to complete the good work He has started in each of them.

Truthfully, this is a very good time in my life. I have a box on a table in my living room filled with notes from people who love me. I have never gotten so many cards and letters in my life, and it's a really good feeling! I don't worry too much about all the ways I want to change myself anymore because I know tomorrow is not promised. Instead, I focus on what makes me happy today. I paint and sew and watch TV shows about interior decorating. I take naps when I'm tired, drink lots of water, eat healthy, and do all the things I am supposed to do to encourage healing in my body. I have to tell you, one of the best things about being sick is everyone thinks it's great when you put on weight! I have steadily gained since my diagnosis, and my friends and doctors act like it's the best thing in the world! Who knew they were so easy to please?

Steve, Dawn, and Emma are back, and I am again amazed to watch the differences between my three granddaughters. Emma has created her own language, so half of her words are intelligible and the rest only have meaning to her. She still runs around on her tippy-toes, but she has learned new twirling dances, dozens of new words, and can count higher than any other one-year-old I've seen. She's got crystal blue eyes, a thick mane of dark hair, and a toothy smile that lights up the room. Addison is a couple months younger and as opposite as they come. She rarely uses words except in her daily temper tantrums where she dramatically throws herself to the floor crying and flailing, occasionally looking up to make sure we've noticed. She plays her own game of loading a chair with all the balls she can find while Annabelle and Emma run around her. She's finally getting a few more curls to add to the wispy blonde strands on her head. Annabelle still amazes me with her heart for others. She brings me homemade gifts every time she comes over, and explains to me that Jesus is living in her heart as we cuddle in bed. She takes after her Gram with her artistry, so we love to sit and make crafts together.

So life goes on as usual, and I'm taking it day by day. I have good days and bad days, thankfully more of the good. Sometimes my pain is worse, sometimes my exhaustion is overwhelming, but my family takes care of me and I come back around. Thank you all for continuing to ask about my health. I won't know much about whether the chemo is working or not until the middle of May. After my fourth round of chemo, we will retest to see what progress we've made and discuss any changes in my treatment that may be necessary. Until then, we are just continuing on the path we laid out. My third chemo cycle begins Tuesday so I am again preparing.

Thank you for the jokes on the last blog! They were just what I needed! In fact, I loved them so much, please feel free to add a random joke to any entry. If laughter is the best medicine, you could be helping my health as well as my spirits!

I got pictures back from the dinner party a couple weeks ago, so you can check out our feast!