Life after the ‘C’ word

After six rounds and four more rounds of spinal chemo treatments, I’m done! I thank the good Lord that my last PET scan on July 3 shows no evidence of this terrible disease. Well that is the good news!

I wish I could say that I have resumed life as normal, but I am hoping that it comes soon. My oncologist says that it is not uncommon  to have a delayed chemotherapy effect after treatment has stopped. He said that this can last about three to twelve months. I am still very tired, and have many mornings of unfreshed sleep. There are days where I can sleep all day and still feel thirsty for sleep.

As I look back on this chapter in life, I soundly resonate the phrase coined several times in the Old Testament, “put on sackcloth and ashes”. The disease shaves off the exterior layers of oneself and leaves you only with your true character. It literally stripped the beauty of eyelashes, hair, eyebrows and even skin color off of me. I learned a thing or two about fear, bravery and courage.

I would be less than honest if I told you I did not experience fear! Ha. I always laugh when I get nervous about a physical exam. My first fear was when during the first round of chemo my heart rate dropped into the 30’s and they couldn’t stabilize it and I had to be transferred to the cardiac unit for a few days. The second fear came when after the third treatment I developed neutropenic fever (my counts were too low to continue chemo) on two separate occasions and had to be admitted for a week at a time. I thought I would die then. I knew I was ‘brave’ or something, because the nurses would tell me I always had a smile and had a peaceful aura about me and they would tell the other nurses I was the best patient on the floor. They always found a way to stay and chat longer.

But here in the past couple of months, I learned that courage really comes after bravery has been completely depleted. You see, there are really no more drugs such as Prednisone and no ‘magic pills’ to combat the myriad of symptoms long after chemo is done. During chemo, I can press the nurse button to summon help and drug relief for nausea and pain. None of that anymore, I’ve only got courage, God and family to lean on. I feel like I’ve aged at least 30 years as the muscles ache and stiffen after sitting just after a few minutes and force myself to shuffle across the room. I really do hobble sometimes y’all! LOL Courage is when I freak out at every soreness and pain throughout my body wondering if the cancer has returned. This is really annoying since I will probably exercise some degree caution for the rest of my life knowing that cancer survivors have a higher rate of secondary cancers. Courage is knowing and accepting that my body will probably never be the same with the fatigue and muscle soreness married with bone pain. Courage is scraping myself out of bed to make these wonderments of mine breakfast and a lifetime of memories with them.

But through it all, I’m thankful and deeply humbled by all the gifts God has given me including my readers. God, I’m thankful for the wonderful little humans you’ve given me. I’m thankful for the tightly woven blanket of support shown to me even while I was in the hospital. To my mother, father, sister, brother and sister-in-law, thanks for always being there for me and my family, for the late night visits and juices. To my mother-in-law who put her life on hold and flew here from Alaska to hold my hand through this treatment and was the brave one to give me shots after each chemo.

To my family and friends who visited me in the hospital and even at home and those of you who sent blankets and prayer cloths and even provisions; and you who also put me on their prayer lists at home and abroad thank you for the bottom of my heart. I could not be here without you, you’re my angels!

Never lose hope, and most of all never lose your praise…

 

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    The ‘C’ word

    The year 2016 was a bit of a whirlwind. Although I stressed (because the body can’t stop, or at least mine didn’t), I knew that God had me and my family in the palm of His hand.

    It was my ninth year at Chevron, things were a bit slow in the O&G field and groups of us had been through what I call a ‘purging’ that spring. It was my first time to be laid off, ever. I was very fond of the company I worked for and it was all I had ever known in almost a decade. I met my husband there. It was a defining institution for me.

    In February, I began to experience a soreness in my breastbone, and after a couple of weeks of this discomfort I made an appointment with the doctor. A couple of times the scheduler asked if I sure I wasn’t having a ‘heart attack’. I assured her that I was not and just experiencing discomfort in the bone and upon movement. During my first visit an x-ray “confirmed” Costochondritis. This condition while harmless, causes discomfort because of inflammation of the cartilage where the ribs and breastbone meet. It can be caused by strenuous activity or injury. The ‘strenuous activity’ made sense because I had two very small children, ha! While it usually resolves itself in a short period, ‘recovery’ may take as long as two years.

    I began my job search and unemployment status in May, and I noticed that the soreness was still there. It radiated from my breastbone to my ribcage and finally ended in the upper right shoulder blade. Then in June and July the soreness seemed to have subsided with only a few soreness episodes. I thought this is great!

    But oh, the pain came back with a vengeance in August, the month I started a new job. I remember sitting through an interview, and experiencing a burning and searing pain that radiated from the breastbone towards the right side of the breast and finished in the shoulder blade area.

    I began to take whatever unused pain prescriptions were left in the house, in order to carry out my daily activities. It took extra effort to pick up my babies, it took every ounce of energy into preparing meals, and our nighttime routines with the littles. Eventually the burning pain would wake me out of my sleep. I began to experience muscle spasms in my chest and the right side of my ribcage. I could not cough or sneeze without pain. In fact, any exertion of my thoracic cavity would cause almost paralyzing spams; so I did everything possible not to laugh at the quirks or jokes my family would make. I visited the emergency room at least once, twice, or maybe even three times because I physically could not function without the extreme soreness and burning pain. I got a steroid shot, and I felt great! Pain-free status lasted about two weeks.

    In September, I visited with my doctor again, and they could not confirm anything more serious. In fact, my doctor told me, “you’re too young to have lymphoma”. So we tried different NSAIDs, but none seemed to have any lasting effects. So then I began googling ways to resolve Costochondritis, and I found that chiropractors were promising  treatment that would alleviate this condition. So off to the chiropractor’s office I went for a few adjustments, and I seemed to find a little relief, but the pain would only return. I also started to use heating pads to sleep.

    We took our daughter to Disney World  in September. It was during this month, that I started to notice that the right side of the sternum begin to protrude outwards. I thought to myself, “I really messed things up by going to the chiropractor!” So I made sure I took some pain medicine and Salon Pas (heating relief patches) with me to DisneyWorld.

    Then in October I went back to the doctor, and were trying to troubleshoot ways to fix this problem, and I piped up, “you know I did have stress earlier this year because of the layoff, do you suppose stress can trigger Costochondritis?” She said yes, and that I needed to see my therapist, and to follow-up in six weeks. I had my Skype appointment with my therapist, and she had my Lexapro increased, and introduced Neurontin.

    I was at my wits end, I couldn’t sleep, I couldn’t focus at work, and I couldn’t do the things I enjoyed doing with my family. I often would work through the pain at work until Friday, when I finally visited the emergency room. I would often pull over on the highway, to ride out the pain and burning episodes. Ice packs would help me fall asleep at night instead of heating pads. I used Salon Pas all the time. I would  run straight to the tub after work and run a bath, to ease the pain in my chest, shoulder blade and ribs. A family friend of mine noticed the lump in my chest and said I should see the doctors at Baylor College of Medicine. I thought why not, let me ring them, and see what they think is plaguing me.

    I had my appointment the second week of November, and was evaluated thoroughly with a team of student doctors. I met with Dr. Paily, and we had a conversation about my pain, and entertained the thought of having Thoracic Outlet Syndrome. The x-ray revealed nothing. But because the lump was glaring at us, he had an MRI ordered. I had my MRI done on a Thursday evening, and on Friday, I called my husband and told him I would be visiting the emergency room after work.

    Laying on the hospital bed, and disappointed that I would only be getting another steroid shot, I noticed I had a missed call from the doctor’s office. A few minutes later, my husband called and told me that the doctor on the other line and was saying I should be admitted to the hospital, because I had a mass in my chest. From February until November, I had not felt any feeling of desperation and despair hit me all at once like it did that Friday night. When I heard the word ‘tumor’ escape my husbands mouth, I immediately felt all the blood in my body rush to my feet. My first thought was that of my littles, and I bawled like a baby. “My babies!” I did not want to leave these young and precious souls without their own mother. I tried to gain composure to drive through the sobbing and tears to our home from the hospital.

    It felt so strange to tell my family that I had been diagnosed with cancer. My mind raced to what kind and how far spread it was. My doctor worked me in with precision to get a full workup done quickly. I went back to Baylor and had the CAT scan done, then a couple days before Thanksgiving I had a PET scan done. The radiology tech’s eyes were filled with compassion, and I knew then that it was serious.

    My husband and I were at St Luke’s to get my core biopsy done on my sternum. Once the procedure was complete, he met me and said that that results of the CAT/PET scan were in, and that I had a 5 inch malignant tumor attached to the bone. I cried when he told me that the mass/nodes were sitting on the pericardium of the heart, but that the good news was that it had not penetrated the sac of the heart. The scans also revealed that I had malignant lymph nodes in my abdomen, right leg near the groin, and on the 11 & 12 ribs of my ribcage.

    In early December, I met with my Oncologist, Dr. Srour. He confirmed that the core biopsy was positive for Large B Difuse Cell Non Hodgkins Lymphoma, and because I had malignant tumors in multiple areas, I had Stage IV cancer and that it was aggressive.  Upon my second visit, I had a bone marrow biopsy to determine if the lymphoma had reached the bone marrow, thankfully it had not. Other tests were attempted to determine if I had the double hitter gene, but the test results came back inconclusive so instead of the outpatient protocol I am admitted for the inpatient treatment. So I started the EPOCH treatment, which means I have a 24/7 drip of chemotherapy over the course of five or six days.

    I finally had closure on what was ailing me: Non-Hodkins Lymphoma, stage IV.

    During my first infusion, I mentioned to the doctors that I increasingly found myself bumping into walls, and feeling confused. So a biopsy was done on the spine, and they found one or two cancer cells. So now with each infusion I receive a lumbar infusion of chemo as well (only last 5-10 minutes) in the spinal sac.

    I now wait for my third infusion, and hopefully a good report on the PET scan.

    I am so appreciative of everyone’s support and prayers especially, I have definitely felt them. In all the flurry of tests and diagnosis, I haven’t been able to return all texts and calls, but do know that I love you all.

    I am thankful for God and my family and friends.

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      ‘Mama’ hood

      Oh my littles! How I wish I could bottle the essence of your innocence and natural wonderment for the rest of my days. Time is a cruel fellow, who I will poke my acacia wood cane at one day. I am jealous of the parents who nonchalantly amble through the progression of their children’s growing, seemingly unaffected by the abandoned stages of the early years.

      But in the midst of the yearning and mourning, I am reminded that I am blessed to be mama to these magnificent babies. Of course there are the moments where the longing to hold on to the infant and toddler-ness seems to fade, especially when one or both of them are having a tantrum kind of day, or when they both want to be held, or when one projectile vomits. It does not always look pretty or smells of lavender and vanilla yumminess, but oh those moments when your toddler stops and gives you kisses or when the bear cub snuggles his rather large curly head into my shoulder: sweet emotion overcomes me and makes it all so worth it!

      I have not blogged in a while, because I am literally afraid of looking at the old stuff and the memories, that potentially could make me bawl! Time please stop! Yes, I am proud of who they are becoming, and the simple sentences they can use to describe compound-complex subjects and I find it so thrilling, but I am still in love with the simplicity of who they were yesterday.

       

      Here are a few photos that I have not blogged about:

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        The glimmer in the fog

        It’s been over two years since I was diagnosed with severe post-partum depression. This is what I’ve found out so far:

        • Although I had no depression or mental health issues before, I had the disposition to be depressed (according to my psychiatrist) the hormones before and after childbirth were the catalyst that activated depression or PPD
        • Not sure that PPD goes away completely or if it does, it changed my mood and perspective and made me aware of my episodes
        • Antidepressants and professional therapy make a world of difference!

        In the two year journey, I think the key to my survival have been God, my husband, my family’s support, and my children, those are the reasons I’m still here. However, there is something I have not been able to my finger on, that makes the struggle of staying here still so ever real.

        I’d like to say to mothers and maybe even fathers with an invisible illness, you are a warrior. We wrestle with the idea that our children and spouse are better off without us, but the thought that our littles need us long enough to survive on their own, reel us back from the brink of doom. They need our physical support (chasing them around the house when they ask to catch them, doctor appointments, etc) emotional support (life lessons, love, discipline, snuggle time, etc).

        My own struggle is often with nostalgia, seeing my littles grow, missing the moments of when they were much younger. Every time I snuggle with Andrew I think of how this how it was when Natalie was this young and then suddenly she was two years old and my heart aches because I wish I could hold on to those moments and her forever. Cleaning out the closet periodically is now less often painful but still sad for me. Not sure if this stems from my childhood fear and sadness of having birthdays and growing up. Grrrr.

        So I’m entering this post today because I grew tired of reading other blogs and support groups that essentially record a warriors story of having once had PPD and eventually become PPD-free. Don’t get me wrong, these resources such as Postpartum Progress helped a great deal. They helped me realize that PPD is not ones own doing or fault. Unfortunately, I’m not that part of the statistic that becomes free of PPD. I’m a real person. Who still struggles. Yet I’m managing to make sure my little wonderments are happy, healthy, and safe.

        I love capturing moments of my little wonderments and I’ll admit to an overshare of photos , but it’s almost therapeutic because I know I am capturing both ordinary and grand moments of the most precious gifts given to my spouse and I, moments that we’ll probably never relive but I get to look back and feel nostalgic all over again.

        I recently found a great blog by Michelle Peterson at staymarriedblog.com and I loved her candor on her own challenges. I found that refreshing. One of her quotes about taking a million pictures of her own littles struck a nerve and I burst into tears, when I read, “After living so much of my life swaying between darkness and a numbing fog, this is my way of doing all I can to make these memories last as long as possible”. There is glimmer in the fog.

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          Valentine’s Day with the little wonderments

          I have an obsession with making projects, mostly spawned because the same products on Etsy would have taken too long to be made and arrive in my mailbox! Hence, the imagination and determination to make it in less time!

          Knowing that Valentine’s Day was at our heels I started in January just wanting a breakfast set or sets. Made with felt, I cut mostly freehand circles and squiggly shapes of shades of brown, red, and ivory and a pinch of yellow. Soon I had enough pancakes and syrup. Just two items was meh, I wanted a big man’s breakfast! Natalie is a big fan of bacon, so I made squiggly shapes for bacon. Sunny Side eggs seemed liked a must-have novelty. Strawberries and blueberries make their punctuated appearance on the menu as well.

          I finished that breakfast project in early February and then I fidgeted for something else to do. Tea! Tea? Yes, breakfast is not complete without coffee or tea. So teabags it was, and I deconstructed an actual tea bag, and built a tea bag complete with a ‘gold staple’ string and tab. Well then we might need something to put all our wonderful breakfast items! Hmmm. Placemats, I had some remnants of blue gingham, pink felt for flag pendants and pom pom trim, all jst in time for Valentine’s Day on a Sunday.

          The best part is seeing my little’s imagination unfurl and enjoy each other’s company, so for now I relish in the moment and document yet another entry in the Sunday Parade Series.

          Thankful for all the lovely people in our lives, we hope that you had a great Valentine’s day with family or friends 🙂

          Suit: Janie & Jack’s herringbone suit

          Bowtie: Janie & Jack red with navy polka dots

          Dress: Ralph Lauren red corduroy

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