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  2. In my time as a caregiver for my parents, there is one theme that haunts every interaction and every decision: the status of the relationship between the folks having the conversation. (Well, duh, Danielle, because that theme determines most things in life, doesn’t it?) (Sure, Inner Monologue, you are correct, but I’m the one writing this, so shush!) Where was I? Oh, right. Relationships. I know there are stacks and stacks of scholarly works written on the complex navigation of relationships in a caregiving framework, and I am not qualified to weigh in on that ongoing discourse. I also don’t mean to make you, my friend, sift through a tome. I am, however, qualified to opine on my own experience, and to put these thoughts out into the universe with the sincere hope that they can somehow be helpful to someone else who comes along and is going through a similar hardship. So, here are my “Top Five Relationship Observations” involving caregivers, caregiving, and the related (pun intended!) situations we might find ourselves in. 1. “Let” your loved one be the person she/he is. I don’t like the word “let,” because adults should not hold reins on other adults, but for that exact reason, “let” fits here. In our rush to make sure our person is cared for and content, we can often get quite pushy. I am extremely guilty of this. I have to stop myself on a daily basis from “parenting” my parents. Granted, I am not currently a caregiver of people with mental incapacities, so my tasks are limited to physical and household assistance, meaning my “parenting” of my parents should be extremely limited. The primary goal in everything we do as caregivers should be the preservation of the inherent dignity of our person. I need that tattooed on the inside of my eyelids. We have the best of intentions: we always think we are working toward that goal when we schedule the doctor appointments and make the phone calls and order the lunch and pay the bills, but consider: are we putting things on our plates that our person would rather keep on their own plates? Are we infringing on their independence, vitality, or sense of identity? Am I assuming a responsibility unnecessarily and/or without being asked (or at least without noticing it isn't being taken care of)? Keep asking yourself this. I am a person who needs near-constant reminders. The most profound reminders have been the simple moments when my parents are still my parents: mom sitting up all night looking after me when I recently had food poisoning; dad meeting me in town when I had car trouble; mom helping me methodically check for ticks when I freaked out after an outdoor fall last summer; dad jumping on the phone to save me from a really mean customer service rep; mom singlehandedly planning a party for 300 people without breaking a sweat; both of them helping me when my cat had a serious injury. The list is miles long. My point is: I may be their caregiver, their homemaker, and their advocate. But they are my parents, and always will be. Acting otherwise, or pushing them away, is nothing less than insulting and indignant. (Even when caring for those with mental incapacities, the primary goal should be the same: the preservation of their inherent dignity). 2. Relatedly: “let” your person maintain their space. Their territory. As much as you can, avoid the natural tendency to become the “alpha” on their “turf.” Since my mom’s diagnosis, and the subsequent aggravation of my dad’s chronic health issues, I have been helping them maintain their home. It is firmly their home, indubitably. I am 32 years old and have an apartment with my husband, even though I may only see that apartment a couple times a month. I’m a big girl (in more ways than one!). But here I am, telling my folks where the laundry and dishes and trash bags “should” go in their own house. Ugh, somebody stop me! WHY do we do that? I know I live here a majority of the time, but it is NOT my “turf.” I am here to serve, not to have the circumstances serve ME. A dear friend once said to me that it’s hard to be told how to do a chore when the person telling you what to do is not physically able to do the chore. I agree; nobody likes to be micromanaged. But, frankly, we need to get over ourselves. Seriously. There is no world in which it is okay for me to be telling my mother where her plates should be stacked, even if I’m the one stacking them instead of her. I may spend most of my nights in my parents’ house, but I am not the boss. This is an ongoing internal struggle for me, trust me. In many many many ways, part of signing on to be a caregiver has got to be the assumption of humility in order to willingly help your person run his or her life on HIS OR HER terms. That should be our motto. We are helpers, we are advisers, we are advocates, we are cheerleaders, we are housekeepers, but we are NOT captains. We can be captains when the actual captain wants us to take the helm, but we can’t take the helm ourselves. That, my friends, is mutiny. 3. Your relationship with someone is NOT automatically the same as your loved one’s relationship with that person. When dealing with business on your loved one's behalf, you must act in accordance with your loved one's relationship preferences and NOT your own. This one is tricky; let me explain via example. a. My husband and my mom are both turf-sensitive people (see above). They both crave their “lone wolf” time, as I call it. Meanwhile, my dad and I are usually up for whatever adventure brings everyone together, even in the same room. This leads to drastically different preferences existing under one roof. Even though my caregiving responsibilities tend to mean I stay 80% of my time with my parents, that doesn’t mean I get to live my life out of their house. My husband and friends are always welcome, of course; in fact, my parents have extremely graciously made it clear that they are family and do not need “permission” to be around. However: that does not give me carte blanche to dictate who is in my parents’ territory at any given time. The burden is appropriately on me to limit interactions that are solely for my benefit, so that my parents' privacy and time are respected within their own walls without them needing to defend their own preferences. b. I may not want to have lunch dates with the same folks that my parents do, and vice versa, but because we are all in this together and are usually chauffeuring and assisting each other when running errands, we all go to the same lunch dates, and we enjoy them for the team. c. Over the course of the years of mom’s treatments (and dad’s too, for that matter), we have all forged various friendships with the members of the medical team. However, my friendships with my parents’ HCPs are not the same as my parents’ own friendships with their HCPs, and that is okay! You may be confused when your loved one has a different reaction to a certain person on the medical team than you do, and it may feel super important to analyze that different response because, after all, the stakes are high. These relationships are crucial to your person’s well-being, so there is immense pressure to get them “right.” But, consider: the members of the medical team are human, just like us. They have friends and acquaintances of different degrees, just like us. So long as your person is feeling heard, cared for, listened to, and taken seriously by his/her medical team, you shouldn’t feel obligated to also be any HCP's best friend! Conversely, if you feel you are the one who has bonded in a friendly way with your person’s medical team members, and your person’s treatment has not been affected by this, encourage your person to let go of any self-imposed pressure to feel the same way you do! 4. Your priorities are not your person’s priorities, and vice versa. Try your best to let this create compromise, not chaos. Hoo buddy, do I struggle with this. One example comes screaming to mind: I am not a neat person. I somewhat thrive in clutter and asymmetry. My mom, on the other hand, is the most meticulous decorator/organizer/arranger you have ever met. She’s amazing: if you need to streamline your space, she’s your gal. The storage room in her home looks like a department store warehouse. She is not a fuddy-duddy, and I am not a slob; we are both fun and funny people. We are not like the Odd Couple; rather, we are more like a before-and-after photo shoot of a Kon-Mari project. Unfortunately, this means that clutter is a source of stress for her; concurrently, organization projects are a source of stress for me. Why? Essentially, because we have totally different priorities with how to spend our time. She would much rather we tackle the backlog of homemaking tasks that have been put on the back-burner since her diagnosis; whereas I would rather focus on just about any other shorter-term task (a dear friend of mine will read this and suggest I mean laundry, and she isn’t wrong!). Essentially, mama and I have different aesthetics. The environment that calms her requires work that stresses me, and the work that invigorates her creates a hierarchy of tasks that I do not prefer. So, where do we go from here? I think the best we can do is tackle both to-do lists the same way we’d tackle any to-do list: gradually, in chunks. Baby steps. The key? Remembering that priorities matter because the PERSON matters. Their life, their terms. Your life, your terms. Even when they are at odds. If you can’t do “one or the other,” then you must do BOTH. Compromise. Not chaos. 5. Your experience with lung cancer is not the same as your person’s experience with lung cancer. I need this one taped to the bathroom mirror. They are intertwined; they are both important and valid; they are both necessary for purposes of personal growth and understanding and coping and advocacy. BUT: THEY ARE NOT THE SAME STORY, and should not be treated as such. You will not answer questions about lung cancer the same way that your person will answer questions about lung cancer, and vice versa. AND: one story is not wrong. They are BOTH TRUE, at every moment in time. The patient is not always right because he or she is the patient; the caregiver is not always right because he or she is the caregiver. The primacy of each party over his or her own life is the only primacy; everything else must be negotiated. Other than that primacy, there is no hierarchy, because everyone involved in the situation matters equally. I know that sounds odd, since we often feel that much of our caregiving experience involves sacrifice, but consider: you made the choice to assist your person. None of us chose lung cancer, but we chose our response to the situation. You chose to marry your spouse; you chose to come home when your parent was diagnosed; etc. In some way, shape, or form, you chose to join the team, whether before or after diagnosis, because you LOVE the person with the diagnosis. Acting on our love for another person is always a choice. While caregiving may be a dramatic version of that choice, it is still a manifestation of the same motivation: we love the person, so we act like it. Do not confuse the involuntary nature of the diagnosis with the voluntary nature of our response to the diagnosis. So: no one member of the relationship is more important than the other, even though we make decisions to sacrifice certain personal comforts or preferences when one member of the relationship is in greater need than the other. We are a team. Perhaps, at the end of the day, that’s all we need: to remember that we are on a team and that the cancer is the opponent. Our person is still someone we love and who loves us, so we can all take our power back by focusing on keeping our foundational relationships strong and not allowing the circumstances to confuse our motivations. Love got us into these relationships in the first place; love led to our decisions; and love can carry us through the dark moments.
  3. Barb, I reported the eye thing to my primary care dr. and my onc. Primary gave me some Zyrtec (otc) to see if it was allergies but that didn't help, I've never had allergies before. after several weeks of having the swollen eyelid thing Onc said he thinks it is Durva related for me so he put me on 10 mg. Prednisone daily without witholding treatments. I set an eye appointment to be looked at for signs of abnormalities or problems inside the eye and am waiting to go to that. I would make an appt. with an eye doctor to see if there are underlying problems though because eye problems are said to be rare with Durva but can be serious.
  4. ale

    Motivation to Move

    Thanks... Ciao
  5. Yeah, the first couple of visits are just scrambled egg land no doubt. Still something that important you would think should be over emphasized, but you are a Jersey Girl at heart so persistence paid off! Thank God for those oncology nurses!!!
  6. Danioh, I answered your first post in an other forum and I'll not repeat that discussion here. Welcome to powerlessness central. At least you consulted with a mental health professional; I tried to tough it out and failed miserably. Unfortunately, lung cancer treatment is often a long slog. Mine was three years and a month of active treatment but since March 2007, I've achieved no evidence of disease (NED). If I can get there, so can you. Let's dwell on wrong decisions and fear. You have two options: treat or don't treat. You chose treatment first time around and you'll likely choose it again. As I see it, the only possible wrong decision is to not treat. Choosing treatment will not eliminate future uncertainty, health system navigation stress, and cancer anxiety (scanziety). These will all remain whether you decide to treat or not treat. I can't recommend a CA retreat center, but I'd opt for a week of solitary camping in Yosemite National Park. When away from population centers, I am awed by looking at stars painting the night sky. My problems just melt away. Yes, I can relate to lung cancer craziness. I think we all can for it never gets better or easier, but it can get crazier. Let's hope things stay just plain crazy. Stay the course. Tom
  7. Danioh, Wait and see or precision radiation? I'd choose precision radiation. In fact, I did and it likely saved my life. One millimeter in 4 months is not a lot but I know it feels gigantic. I recall those agonizing scan consultation when we'd go over waxing and waning of my tumors. Then we had the here today, gone tomorrow consultations. Recurrences just plain suck. The only improvement in the suck is new treatment modalities that didn't exist when I was in the recurrence swamp. From my understanding, the differences between proton therapy and precision radiation are two: proton radiation kills tumors, including cells on the margin, and stops, and it costs about 10X that of precision radiation. Both fry tumors; CyberKnife or SBRT goes through the body, and proton therapy stops right after the tumor. But precision radiation works; I'm alive to testify! Stay the course. Tom
  8. Yesterday
  9. Hey Charles. I’m having the itchy swollen eyes issue. Hopefully it’s my allergies, of course it may be a side effect. Another person I work with is having the same symptoms from her allergies-she’s not a patient. Wondering what you are doing for it and what your doc says about it.
  10. They probably did tell me, probably at the first onc visit and I remember my head spinning with a million things. Better late than never.
  11. Humm...I have a 1cm nodule that has been "indolent" for a while. Its grown 1mm in four months. Last year I had a lung cancer that was treated so doc is suspicious that this could be cancer. Research on indolent nodules are mixed as there is concern re: over treatment and quality of life. Pulmonologists say do surgery, oncologist, wait and see, and lung oncologist said wait uo to three months and treat with radiation either now or then. I am leaning towards wait and see...for now but will consult with radiation oncologist to gather data. Was also wondering about proton therapy for it. Best wishes and continue with scans as others have suggested.
  12. Hi Community. While I know I am more then this lung cancer, here is the data. Diagnosed in 2018 w/stage 3A adenocarcinoma; had RUL lobectomy via VATS; treated w/chemo as adjuvant. In Jan of this year, another tumor was identified in my ULL. 1cm, indolent so far. Been gathering data for treatment approach. Lung oncologist last Th told me to prepare for the long run due to how quickly the tumor came back. Gasp! The powerlessness, uncertainty related to the future, stress from navigating the health care system, etc has thrown me into a full fledge anxiety disorder and agitated depression. Had two sessions with a psychiatrist from the cancer pallative care unit and was placed on meds. However, I feel absolutely frozen in fear of making the wrong decision. Overwhelming! Can anyone recommend a retreat center in CA? I am a clinician and planned out last weekend a full retreat schedule with activities that I thought would benefit me. As I get healthier perhaps I will offer it...but now, CRAZYINESS! Can anyone relate?
  13. Run like a butterfly sting like a 🐝! That’s awesome!
  14. Thanks Ro! So this sucker doesn’t have a name yet! Maybe you can start a pool to come up with a name something like Roz*****atinib. Good luck on Tuesday...
  15. Ah hah! You are a mutant too! I just knew it! In this Month’s Lung Cancer Living Room there was a discussion about the PDL 1 and immunotherapy being reclassified as targeted or personalized therapy. High ho the cancer witch will soon be dead! What awesome news. Remember back in the early diagnosis days??? You’re on a winning streak! Too bad they didn’t tell you months ago! Whoo hoo!
  16. Here are the details of the clinical trial that I am participating in: A Study of RO7198457 as a Single Agent and in Combination With Atezolizumab in Participants With Locally Advanced or Metastatic Tumors Experimental: Phase 1b Exploration: RO7198457 + Atezolizumab Non-small cell lung cancer (NSCLC) or Melanoma cancer immunotherapy (CIT)-treated participants will receive RO7198457 (at dosage lower than maximum tolerated dose [MTD] based on available safety data) along with atezolizumab at a fixed dose of 1200 mg. Sponsor: Genentech, Inc. Seems like about 4 hours after the infusions is when the adverse reactions kick in (Rigors, High BP, Fever), but it is managed with narcotics that alleviate the symptoms)..There are other potential side effects but I've noticed mainly the fatigue aspect. I'll keep posting updates as I experience it. Day 2 is on Tuesday!! Ro
  17. BridgetO


    Think of coffee not as fluid, but as anti-water. If you have to drink it (and I have to or think I do) try to drink 2 glasses of water for every cup of coffee. It's kind of like switching from smoking to vaping-- it's not ideal, but if you can't quit it might be a better option. Fortunately, or unfortunately depending on how you look at it, while I was having chemo, coffee nauseated me and so I couldn't drink it.
  18. Isabelle, if you want to recommend a particular product, I suggest you do it in a private message. If you haven't done this before, you can do it by going to the top of this page and clicking on the envelope icon near you name. Bridget O, Moderator
  19. Hi Ale- You’re such a sweetie! Unfortunately I am an ALK mutant- it’s like an EGFR but more rare. We call it winning the wrong lottery.... Hugs to you! Michelle
  20. ale

    Motivation to Move

    Sorry Michelle, have you news about new drugs after osimertinib for EGFR? Thanks and kiss every One
  21. You boys rock! Yep- I got out and did 8 miles- the longest PC ride to date. Doesn’t sound like much, however Overland Park is like the Glen Ridge/Montclair/West Orange area. Kansas is not flat! The recumbent trike means you have to push all your weight... I did the Lung Cancer Living Room yesterday- it’s dedicated to mutants. My take away was the necessity to keep in shape while on Alectinib. This is the “easy” drug. The next generation inhibitors aren’t so well tolerated. My hope is the fourth generation inhibitor will be available so I can skip the third generation. Going to squeeze in another ride before the storms set in AGAIN... Power on......😬
  22. Curt

    Motivation to Move

    Thank you @Rower Michelle and @LouT. I was about to hit the couch for some serious TV watching last night until I read your posts. Two miles is amazing Lou! Michelle I hope you did your recumbent bike. I was able to do a 20 minute medium intensity strength work out. Mostly isometric and cardio. I sue Fitbit Coach. First time post surgery that I got through it without feeling more winded than I did before surgery. I took a break for a few weeks while I was fighting a cold. I even had enough energy to wrestle (and win) against the kids before bed. A little bit of sensitivity still on my incision side but it took a six year old jumping on it for me to notice. 💪🏼
  23. Diagnosing Lung cancer is a really difficult thing. I hope that there will be better diagnostic tools in the future. I watched a nodule for over a year that was found by accident. It didn’t grow at all but given other factors like the shape, location and family history two doctors recommended surgery. I went in to surgery not knowing if it was cancer. I came out with a Stage 1 NSCLC Adenocarcinoma diagnosis. The doctors said that the nodule left undiscovered could have grown very slowly and undetected for a very long time. It is good that you are watching it. Tom’s advice on scans every six months is what I found to be the standard for monitoring suspicious nodules. Hope that it is nothing, but continue to pursue what it actually is.
  24. Well, it started growing 2 years after discovery..... to 8mm. Then about 2mm every couple of years until reaching 1.5cm. So it started growing 10 years ago becoming 8mm. From what i’ve Read about lung nodules every thing I listed about myself and the nodule leans toward the nodule being a slow growing cancer. Upper lobe,increasing size, parent with lung cancer, emphysema, lobular edge, ex smoker, non calcified nodule and age. Thanks for your response.
  25. Lee Ann, Welcome here. Almost anything is possible, especially with lung cancer, but many there are many types non cancerous pulmonary nodules often found in the lungs. Here is a Cleveland Clinic resource I've been consulting for many years. Smoking is indeed a lung cancer risk factor so continued CT scans is a very prudent action. The scanning interval most often used for this symptom is a scan every six months. I wouldn't worry about the radiation exposure from these scans. The dose rate is very low. Moreover, there are low does CT scans available and you might ask if you are receiving this type of diagnostic. Stay the course. Tom
  26. The majority of lung nodules, 60%, are not cancerous. It is possible for cells to progress from being very low activity precancerous cells to them becoming more active cancer cells. How fast did it take it to grow from 6 mm to 1.5 cm? An increased rate of growth is cause for concern. Give your family history and your having smoked I would continue to keep a very close eye on it. It may be nothing, but if it is lung cancer you’ll want to get treatment as early as possible
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