DDOT Posted August 9, 2018 Share Posted August 9, 2018 23 hours ago, DrBee said: Oh Dorothy. I wish I could wormhole to KY and give you a big hug. So please know I am THINKING one at you! I wanted to offer this piece of hope regarding Al's WBC and platelet levels. When my bestie was going through chemo for BC last year, her #s got pretty low a couple of times, to the point they might have made her take a break in her infusions. But they ultimately plateaud and then started going up. She started some heavy duty immune boosting supplements right around that time so we think that might have been what did it, though we can't be sure. You probably are all over this already, but if you haven't already, you might check out some supplements with astralagus, echinacea, an immune boosting mushrooms (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4684115/). That's what she used. But the important thing is that just because his numbers have gone down does not NECCESARILY mean they will continue to. I like the idea of all the smaller meals. I just keep offering food that he generally likes throughout the day; even if he doesn't think he's hungry, often once I suggest something, he'll be amenable to it. He totally refuses to drink things like boost or ensure, BUT I am learning all kinds of other things that have tons of nutrients. Fortunately he adores veggies so I throw greens into and on everything! Things like miso and ramen (with extra homemade chicken broth) are also comfort food to him (his mom was Japanese) and go down easily. The fluid thing is going to be a struggle, so I am trying to think about it as creatively as possible. I may have to make a little chart or something (my friend has a really cute app on her phone that tells her to drink water by displaying a little cartoon plant that looks sadder and sadder if she gets behind in her hydration goals!). He is one of those who often responds to being ordered around by digging in his heels further, so I have to be strategic in how I get him to do stuff. Dorothy, I SO understand about how hard it is. Our first anniversary was this past weekend, and my gift to Lou was a calendar with each month (starting this month) filled with pictures from that month in this past year…the idea being it inspires us to remember to celebrate the moments of joy every day and capture them to put into NEXT year’s calendar. But it was SO gutwrenching, looking at all the pics of things we might not get to do together in the future. Damn. My friend who had BC was, before that, a longtime caregiver to her partner who died at the age of 34. She has a great mantra that she got somewhere: "Dump out, love in." Meaning, if we imagine a circle with the survivor at the center, us just outside of that center, and then everyone else radiating out from that with their place in the circle determined by how close they are to the survivor, then when we are interacting with someone closer to the center, we only give love. If we need to dump, we only direct that toward the outside of the circle. Does that make sense? Keeping that in mind, and really relying on my friends to let me dump/vent/be pissed off/ etc, I am finding it easier to keep it together around Lou and just love the hell out of him as best I can right now. Along those lines, I don't think you should ever have to apologise on this forum for being honest about how you are feeling, and how scary and sad it is. I think a panic attack is a perfectly normal response. I thank god for being able to message my two besties at any time of the day or night with anything I am thinking (we use FB messenger). One of the things I have repeatedly said is that I don't know how caregivers survive this, especially spouses who are as clearly in love with our DH's as we are with ours. But people do, and we will, whatever happens, even if sometimes that is just getting from one day to the next. It sounds as though you have some very loving and supportive family; that is one of the best tools we can have in approaching this project of survival, and looking past merely surviving to LIVING, I think. I ADORE your idea of dancing when it is too cold to walk! Also, I am a hilarious dancer and laughter has to be good medicine for us both, right? You are right that getting out and doing something is better than nothing, and I am trying to quell frustration and also "build in" successes by not measuring what we do now against what would have been normal a few months ago, but against the day before, and remembering that, compared to lying on the couch all day, ANY amount of walking is literally an infinite improvement! After an appt today, he wanted to go to the lakefront and just walk somewhere ("I need to see ANYTHING different", he said), and we did for like 25 mins, and at a much more leisurely pace than usual, and he tolerated it much better than he did the 3 mi hike last Friday. So we agreed if he doesn't feel worn out from it come tomorrow, we'll do another 25 mins and take it from there. I'm keeping notes on all this too - I bet you are an amazing medical secretary as well! :)) Because he has the ALK mutation, he'll be starting with targetted therapy - alectinib, to be precise - theoretically tomorrow (when the meds are due to arrive). Yay! I cannot wait to get started! Hoping side effects won't suck too much...but, more than anything, hoping it is effective! Everything I've read sounds very promising. Crikey, it must feel like forever to wait for that next PET scan in 12wks. I think we get one in 8 (from the date when he starts taking the alectinib), which is still going to feel like an eternity. Was the gastroenterologist today? Since we both seem to do a fair amount of late night posting, unsure whether "tomorrow" referred to Tues or Wed. Big hugs and so much thankfulness for your wisdom and positive attitude and willingness to share. Sending so many good thoughts! Bethany Bethany I appreciate your suggestions for ways to help improve Al's immunity. I am aware of Echinacea properties but the other two I am not but I will look them up. Al did see our Gastroenterologist on Tuesday, bleeding had stopped but bloodwork showed lower wbc, rbc, platelets and hemoglobin numbers. After exam he staged Al's hemorrhoids at 3 and has now referred him to a Colorectal Surgeon but only with approvals from the 5 member Oncology Lung Group. So, they always do labs before every tx and he is scheduled for chemo/Keytruda tx Friday, 8/10 but Gastroenterologist said his numbers were OK to receive tx if blood count doesn't drop anymore. He had lost 9 lbs., I knew he was not eating much, that large tumor in his side is causing him more pain and he hates pain medicine. So Al is worried that the bleeding may start again over the weekend after his tx and is worried about even scheduling the hemorrhoid surgery. I think I am going to ask the Hematology Oncologist if he should receive more than just fluid after his tx Friday. I want you to see the happiness and memories in your pictures, not think about things you might not get a chance to do. Ever since June1, I have to stay positive and convince him that these tx are going to work. It may take a year to shrink all the tumors and lymph nodes but that is what we will do. You and I will need to be the stronger spouse for a change. Al's biggest worry when he got sick was what would I do by myself if the txs did not work. We had a big hug and cry then I told him we would not discuss that again. I injured my back severely in 1984 and I've had 5 back surgeries but it is stable now. So that is why he worries. I told him it's going to take all our concentration to fight and to beat this cancer. My Mother always said God never gave anyone a burden too heavy to bear. I think maybe HE is going to have to help us carry this one. Yes, we do have wonderful family and friends to help me out. Same grandson just came in to spend the night again, gave me the Pep Talk this time.😎 Yes, quality of life is very important. And you & Lou and Al & I are going to have the quality. Glad I mentioned the dancing, we started out dancing as therapy for my back but we have been dancing slowly this summer. At our age fast is not a great idea, I don't want Papaw to go into the jitterbug or disco. 😊 It was good that Lou wanted to walk awhile, you can just follow his lead for how far and how fast. You two have always been fit so it is hard. But anything keeps his muscles stronger. I don't know much about the ALK mutation but I'll read up about it. He starts his tx with Alectinib on Thursday 8/9. Hope his infusion goes well, with few side effects. You and I will be counting down the days to the PET Scans. Fingers crossed for both Al and Lou. Thank you for being a my friend and shoulder to lean on. Sending many good thoughts back. And a sincerely big hug and wishes for tomorrow. I will try to write Thursday night but no bother answering if you are helping him. Dorothy Link to comment Share on other sites More sharing options...
DrBee Posted August 9, 2018 Author Share Posted August 9, 2018 10 hours ago, DDOT said: Bethany I appreciate your suggestions for ways to help improve Al's immunity. I am aware of Echinacea properties but the other two I am not but I will look them up. Al did see our Gastroenterologist on Tuesday, bleeding had stopped but bloodwork showed lower wbc, rbc, platelets and hemoglobin numbers. After exam he staged Al's hemorrhoids at 3 and has now referred him to a Colorectal Surgeon but only with approvals from the 5 member Oncology Lung Group. So, they always do labs before every tx and he is scheduled for chemo/Keytruda tx Friday, 8/10 but Gastroenterologist said his numbers were OK to receive tx if blood count doesn't drop anymore. He had lost 9 lbs., I knew he was not eating much, that large tumor in his side is causing him more pain and he hates pain medicine. So Al is worried that the bleeding may start again over the weekend after his tx and is worried about even scheduling the hemorrhoid surgery. I think I am going to ask the Hematology Oncologist if he should receive more than just fluid after his tx Friday. I want you to see the happiness and memories in your pictures, not think about things you might not get a chance to do. Ever since June1, I have to stay positive and convince him that these tx are going to work. It may take a year to shrink all the tumors and lymph nodes but that is what we will do. You and I will need to be the stronger spouse for a change. Al's biggest worry when he got sick was what would I do by myself if the txs did not work. We had a big hug and cry then I told him we would not discuss that again. I injured my back severely in 1984 and I've had 5 back surgeries but it is stable now. So that is why he worries. I told him it's going to take all our concentration to fight and to beat this cancer. My Mother always said God never gave anyone a burden too heavy to bear. I think maybe HE is going to have to help us carry this one. Yes, we do have wonderful family and friends to help me out. Same grandson just came in to spend the night again, gave me the Pep Talk this time.😎 Yes, quality of life is very important. And you & Lou and Al & I are going to have the quality. Glad I mentioned the dancing, we started out dancing as therapy for my back but we have been dancing slowly this summer. At our age fast is not a great idea, I don't want Papaw to go into the jitterbug or disco. 😊 It was good that Lou wanted to walk awhile, you can just follow his lead for how far and how fast. You two have always been fit so it is hard. But anything keeps his muscles stronger. I don't know much about the ALK mutation but I'll read up about it. He starts his tx with Alectinib on Thursday 8/9. Hope his infusion goes well, with few side effects. You and I will be counting down the days to the PET Scans. Fingers crossed for both Al and Lou. Thank you for being a my friend and shoulder to lean on. Sending many good thoughts back. And a sincerely big hug and wishes for tomorrow. I will try to write Thursday night but no bother answering if you are helping him. Dorothy Dearest Dorothy, I think with the immunity, everyone has things at work for them that might not work for others, but it seems like it's worth throwing as many things at this as possible, right? I am so glad to hear that everything is being coordinated so well without oncology team. Clearly that sound to you as I can tell that you are extremely organized and on top of things. I do hope that he will be a good candidate for surgery - and that there won't have to be any break in his treatments. That's definitely one of the blessings about these being every 3 weeks as opposed to say every week is that I would imagine things can be done in the break. I do hope those numbers plateau - or even improve - as they did for my friend when she was getting her breast cancer chemo! It does happen. But you're right it seems as though the GI stuff will need to get stabilized for it to be a permanent Improvement. I think my most important take away from your whole post is that reminder of this Bittersweet but very important silver lining in all of this. It definitely shows us the beauty and value in the everyday Dash whether that is a short walk, just sitting watching silly TV together or doing a little dance. Every time he smiles, or we laugh at some stupid thing the cat has done, or he gets excited about a bird, my heart lifts. One of my friends who became a widow at age 34 advised me to try not to dwell too much in that place in the future where we might not have these guys by our side. I think it's impossible to not go there sometimes, especially at the beginning when we are in Shock. By the way I think you and I are both completely allowed to still be in shock. But hopefully as time goes on and they get stabilized and we get used to our new normal, we can just dwell in the moments that we have with them and know that we are making new memories for down the road, even if those memories will potentially for a while be painful. You're obviously incredibly strong. I would have known that regardless, but knowing that you've been through five back surgeries and come out being such a positive and proactive person confirms it! I am so glad for you that you have such wonderful family! Everything I hear about them just makes them sound better and better There's some good information about ALK mutations in parts of the lungevity site, but kind of spooky thing for this conversation is that basically we will now be using a t k i a tyrosine kinase inhibitor. This is an oral drug, and I know that folks with mutations like EGFR and ALK+ positive mutations can use this kind of drug. It is taken orally, rather than infused. So it arrived yesterday and we were actually able to start it yesterday afternoon! While some people do see differences in just a few days, I'm certainly not expecting us to see anything yet. but we are incredibly relieved to be underway, and a couple days early at that! I knew you guys might be really exhausted tomorrow after labs and infusion, but when you get a chance, please update on how his numbers looked and how the infusion went yesterday. Sending big hugs and tons of love to you both! Link to comment Share on other sites More sharing options...
LOVEMAMA Posted August 9, 2018 Share Posted August 9, 2018 Good luck for the treatment DrBee... Link to comment Share on other sites More sharing options...
DrBee Posted August 10, 2018 Author Share Posted August 10, 2018 Dorothy, just know I'm sending love and strength today. Look forward to an update when you have a chance. Big hugs to you both. Al seems super strong and I suspect you're even stronger. Link to comment Share on other sites More sharing options...
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