Kimberlyn5

Hello everyone. I've been keeping a journal through the experience as a cancer caregiver for my brother Kurt (stage IV testicular cancer; dx 10/5/13) and husband Philip (stage IV metastasized lung cancer, dx 12/27/13). This is something I wrote that captures my experience as we get ready for our local Relay For Life tomorrow: Exposed The waves crash upon the shore heralding a storm. The sky greys and the wind throws sand, biting your skin. It is a frightening place; knowing what comes. That the worst is not yet here. The wind whips your hair about your face. The fierce power of the elements overtake your senses, roaring of crashing waves and with sudden desperation, you realize your small insignificance on the face of the desolate beach. Where there is nowhere to hide. Nowhere to seek shelter. And the storm comes. The rain heralds arrival. Hard and heavy, it rips at your clothes, seeps into your soul, chilling your bones. You have no choice but to become one with the storm, unable to flee, unable to hide, you embrace its power. Reason washes over you and forces acceptance that there is nothing to do but wait. Wait as the storm of emotion linger, rolls and rages. Somewhere in your small insignificance, there exists a knowing. Every storm cannot last. There will be an end to this assault…Because we know the rain never lasts forever... Slowly, slowly, the changing landscape, brings new questions. Will I exist after its passing. Will anything be the same? As with the ocean shore, we too will be changed. We are all at the mercy of life’s storms. As we survey the shoreline, a lifetime of debris has been piled high at the cliffs edge; leaving the surface - New. Softened. Cleansed. Clear. Sun rays break through the clouds, sparkling wet sand, revealing depth the pools of living water, unveiling the beauty and strength within our nature. And you feel, for the first in a long time, the Son smiling down at your face. God’s loving caress on your cheek. And you know the storm has passed and in it’s wake, there is Hope. Blessings, ~Kim

Thank you for your posts! There is so much wisdom here. My husband, Phil, is considering to delay the next round of chemo which is supposed to start Tuesday. This is a follow-on of 6 weeks Taxol/Carboplatin after just completing 5 weeks of combined radiation and chemotherapy. I can't say that I blame him. An MRI of his brain scheduled next week to view the positive effect the 6 weeks of whole brain radiation that ended January 31st. He had remaining 3 metastasized brain tumor lesions. This is the first review of his brain since his stage IV lung cancer dx and emergency crainiotomy to remove the large brain tumor 12/27/13. We've been pushing forward at a fast pace and we are all exhausted. The MRI is scheduled next 5/14, results to be reviewed 5/20 with his oncologist. This is scary stuff. Meanwhile, brother Kurt's PET scan is tomorrow to reveal the extent the tumors have grown/shrunk and level of metatasis. This is the first time we're going to be looking at the result his completed treatment protocol for his Testicular cancer and where we stand in his fight since his dx October 2013. I'm scared for them both. There are so few options for these guys if the results show growth and active cancer. I don't know how we are going to handle anything negative at this point. Our kids, my parents, Phil, Kurt, our extended family.... I have to stand in faith and hope that we will get through this. It's all I've got.

Thank everyone! I'd like your opinion, not sure if this is a moral or ethical issue. When the oncologist made the statement to my brother that "surgery is not indicated in this treatment plan", it was confirmed to me after I followed up with the Oncology RN that surgery is not an option due to the size and position of so many tumors.... It didn't register with my brother that this is not a good thing, which he thinks it is. Yeah! No Surgery! Up until now, surgery has always been the destination after the chemo was completed. Well.... chemo is done now.... I've done way too much research on his particular cancer, I know that a cure requires surgery. I agree with the Oncologist that there is certainly nothing to be gained by an EXTENSIVE surgery, with a year recovery, if it can't remove ALL the tumors. Is there anything to be gained by telling him? The team has decided on a "watch and wait" mode, allowing Kurt to get on with his life for as much time as he has left. On the positive: It gives my parents a chance to exhale and Kurt a chance to live with hope... But is it unethical? It is certainly a kinder, gentler approach. My brother has never researched his cancer, which shocked me at first, but he likes to lives in a state of his own reality... Is it horrible of me to keep this secret and the "reality" of the prognosis to myself?

Thank you for your kind words and great suggestions, everyone. As I was reading and thinking things through, it occurred to me that much of what I'm feeling I've placed on myself. I feel a lot of guilt that I don't want to spend every waking moment with my husband. I require breaks. My heart breaks for our 16 year old son and I want to be both mother and father and do everything I can for him. But I can't keep him from being affected by reality, no matter how much I wish this had not visited his life. I also realized are several things that I'm doing that I can offload.... Being the only driver, I have the authority to say "no" to unnecessary trips. David's bicycle is great alternative transportation for a 16 year old. All other trips are schedule at MY convenience and I have friends that will grocery shop for me. Our 22 year old is overwhelmed with college, but school ends in 4 weeks and then he can help out. There is a new chore chart to help keep things organized. I've asked my best friend to spend some hours each week organizing the medical billing and my admin stuff that never gets done. Steph.ny your message was so heartfelt. And you totally get what I'm going through. I'm looking at the next 5 years very possibly losing my husband, brother, mother and father. I'm trying to become okay with the "circle of life", but I'm not feeling it. I'm going to make an appointment with a grief counselor through our local hospice. I can see that I need it. Fortunately we've found an oncology team that is local, brilliant and kind. It's the all the running around for all the specialized services that was crazymaking. My husband and brother are under the care of this oncology team and I think things are going to slow down for the next few weeks as we're in between treatment cycles. And breathe..... I have time to breathe. Thanks everyone, ~Kim

Thank you for this forum topic; I never heard of anticipatory grief until a counselor on a cancer support phoneline introduced me to the term. This I've hit the wall coping. The responsibilities, grief and frustration I feel is overwhelming. I am powerless and can do nothing but support my husband, brother, family and children as we watch and wait for the progression of disease. The loss I feel already is staggering. I can't begin to think about the future. I am barely able to deal with the now. I am emotionally exhausted and the worst is yet to come. On October 5, 2013 my brother (48 yrs) who lives locally, was diagnosed with Stage 4 testicular cancer. Unusual that it was so advanced, but he was in denial of the symptoms. I was devastated, he is my only sibling, single, career military man and it was obvious from the start that he was going to need support scheduling appts and following drs directions; still trying to downplay the seriousness of his diagnosis. Our parents are both 84 years old and feeble. I got him into Stanford Hospital, he began chemo, and within one week contracted a blood borne infection that almost killed him. ICU for 1.5 months, released from hospital Dec. 3rd with an partially amputated left leg. Spent December working with Stanford to clear up the remaining infection and approve him back into chemo. I remember spending Christmas Eve at Stanford at a plastic surgery appt with him. Meanwhile, I run a small business with my husband which we built around my husband's software design skills and we need to keep that going for necessities like shelter and food for our 16 and 22 year old boys. On December 27, 2013 my mostly healthy husband (52 yrs) had a stroke at 3am. EMT's called, rushed to hospital for CT scan and tests revealed metastasized Stage 4 lung cancer to his brain. Emergency crainiotomy removed an egg sized tumor from his frontal lobe. We've been granted a miracle in that he still has speech, his personality, motor skills... but he is almost childlike emotionally, intellectually no longer able to work. It was made absolutely clear by some well meaning but very misguided doctors in the first few days after surgery that his cancer is terminal. The best one said "if you think he'll be here next Christmas, you're fooling yourself. He has weeks, maybe months and will die by stroke, seizure or in bed in the middle of the night". Gee. Thanks, doc. These last few months have been the most horrible, painful, agonizing of my life. I'm running from husband's chemo and radiation to my brother's appts and surgeries, dealing my 16 year old's painful emotions, my parents fears for their son, my husband's fears for himself and us, his confusion and pain, and juggling business projects to contractors. NOTHING IN MY LIFE HAS PREPARED ME FOR THIS!! Everyone says I'm handling things well and how strong I am. I'm not strong, I'm in survival for my family. They don't see my heart breaking daily for the life that I had with my husband. He used to be my strength and my rock. And now surgery is no longer being considered as part of my brother's treatment plan. My brother is thrilled that there will be no surgery. I am the only family member that understands that we are transitioning to pallative care and there will be no cure for him either. I cannot believe that only 6 months ago, I had a great life. I know that I will never have that life back, ever. I could use any suggestions to have the strength to keep going; sharing my situation out to this community gives me hope.