My Husband, My Life, My Love, My Family, My Cancer
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I’m so sorry you deal with this alone, Candy. Is there a way if you have to have a transfusion, they may have a hotel nearby where you can stay for the night? I know it’s two hours home, but if you’re not feeling well, maybe that’s an option.
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Mel, glad you had a pleasant time with your son, that is great.
Mae, glad your drainage is good, take care.
Pocket duty for moth and anyone else having tests.
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available for any pocket duty as well….
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Candy, I'm sure I've heard from some here on BCO, that their MDA MO manages their treatment plan, but a local MO does the day-to-day hands-on (so to speak). It's there any chance your local center would work with the bigger one in that way?
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SeeQ- In my mind that would be the best way. I have thought about this before. The larger cancer center MO leads and the rural MO is there for local treatment, labs, transfusions if needed, etc etc. I asked my Palliative Care team about it. They said that having 2 MO's would not be good. They may disagree about how to treat me and that could get sticky if 1 says ___ and the other disagrees. Like 2 cooks in the kitchen. I have asked about if I would need IV chemo in the future. Could the larger cancer center MO order the treatment but I get it locally with the oversight of the local MO. I was told NO. That in that case I would have to transfer care to the local MO if she is the doc on duty when I get the chemo. 1 cannot order the chemo and the other monitor my reaction to it.
So I am told to have my PCP involved. He would order the blood or platelet transfusion (if needed at any point). I would get the transfusion locally under his order. He would be responsible, not my MO that is 2 hours away and does not have privileges at my local cancer center or hospital. But.... my PCP cannot order chemo. Has to be an oncologist. Blood is basic. Specific cancer treatment would not work with the PCP ordering it--- not his specialty.
How do the ones on here that do MDA and local MO coordinate all this?????? SeeQ or anyone, do you remember what BCO member does this?
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Candy, I don't recall, but it was probably on the liver mets board (I mostly follow that one, liver/ local treatments, this one and Verzenio... pretty sure it wasn't on the Verzenio board)
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Candy, I go to MDA in Houston but am moving to the cabin 9 hours west of here. I discussed the move with my MO and we made a deal and plan that she’d remain the primary MO and I’d return every 3 months for scans but would receive my maintenance chemo (Herceptin) every 3 weeks in El Paso (closest city with oncology care). She recommended a former MDA fellow that she worked with, he is at Texas Oncology. MDA sent in the referral and medical records and he has access to MyChart. I think insurance has it classified as a secondary oncologist and it seems this is a fairly common set up. All info between them is shared but she directs the plan and he handles the day to day stuff.
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In the past couple of weeks I have had so many scans, procedures, and blood drawn that I’m totally worn out. I’ve had a PET scan, a CT scan, a bone marrow biopsy, and an echocardiogram. Oh, I also had a platelet and blood transfusion. Many CBC draws. Hope after all of this that they finally figure out what’s going on with me. My platelets have been around 19 and red blood cells at 2.2 and they don’t come back up on their own.
Please say a prayer that there are finally some answers.
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Hey ladies
Hope everyone is well.
Mae I thought about you with the storm but thought the flooding would be in low lying areas. It was nice seeing you Monday.
Mel those special times with adult children are amazing. Shows how much live and nurturing you put in.
Mara please answer how you pace yourself with music and the treadmill. I remember when I used to go to a gym sometimes the instructor would increase the tempo so it was a familiar song but speeded up to make the workout more intense.
I’m available for pocket duty.
My mental health is taking a beating with my own emotions and issues loved ones are going through.
Take care all
Tany
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Mae- Thank you for posting !!!! That is what I want. I could go to the larger cancer center which is a 2 hour drive away every 3 months for scans. Then get injections, labs, blood (if needed) and chemo (when needed in the future) locally. But my Palliative care team says it is not done that way. I thought "why not" and thought someone on here did that.
Do you see any "2 cooks in the kitchen" issues with your set up? Like MDA MO says ___ and the Texas Oncology doc says "No, I think ____.
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RosieRed, I'm sorry you've been having such a hard time. Hoping they sort it out and get you feeling better asap. That sounds really miserable.
Tanya, sorry you're feeling down. Sending tea & hugs
today I found out a Twitter friend with mbc has died. She was in her late 30s. It's so very sad.
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Candy, I had no issues but it was understood from the get go and the secondary MO had no problem with the arrangement. I would imagine you cancer center oncologist would have experienced the set up before and could coordinate things. I think it helps that the secondary worked at MDA before.
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Tanya~I hope that they get better. I have some family issues going on myself. Doesn't make for a happy thing at all. I hope it's ok soon. We need peace. That's what each and everyone of us needs is peace. Is no family drama and everything we need help with. Shouldn't be this hard. Cancer is a curse. Once you get , it seems like everything. Starts to fall apart. Not intentionally. Just kinda happens. People “forget" you have cancer and it fades for a bit. Then rears it's ugly head from any problem It has effected everyone and everything.
I would have been able to handle things differently had I. It gotten sick. I would have been working and I wouldfeel more like and independent woman. Not relying on anyone else for anything. I hate that feeling. That feeling of what if I'm left? Happens all the time men leave their wives It's a full time job having cancer and taking care of someone who has cancer. It gets old quickly. I hate feeling like I'm not strong. Physically, emotionally, or mentally anymore. Boom blown wit the cancer. I went to see my onc Friday. He says you've been on ibrance for five years now. Im not. CHanging anything you're doing great. Well Damn it. I want to feel great. Doing great and the way I feel daily are not great. My ass is kicked four hours after I wake up. Fatigue is really a struggle. Not to mention the mouth. I don't eat. But don't loose and ounce. I'm miserable about the body I've been left with. With who I've been left with. I just need my son to launch. Once that happens I think I'll feel better about my kids being on their own. I can know they can do it. Considering we never know how long we have. No one does. I need that to happen to be at peace. It's the one thing I believe. Holding it back. I hope he finds something soon. It's time for him.
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Rosie~ thinking of you too. Things have got to smooth out for you. I’m sending you good vibes. And thoughts of healing. Which we all need.
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Then sometimes I feel like
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Tanya, when I walk on my treadmill, I walk at about 2.5 mph an hour to 3 mph max and have to hang on. I probably walk a similar pace walking outdoors too. When I am just marching on the spot in the apartment, I increase the pace of my mp3 songs using VLC media player on my phone. I turn it up 10 percent and when on the spot I can go very fast. I cannot do a really fast pace long but it is a good way to add some steps in the house when I cannot get out.
The silly stepping I did this morning to get around the house combined with shopping with DB and SIL gave me 8000 steps. In case I did not mention it, I basically marched on the spot and moved forward very slowly.
Tanya, edited to add also that there is workout music on youtube as well, like around 125 bpm that are fast but not too fast. Again, this is just marching on the spot. Just a way to get steps in when I don't get to walk outside.
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Hi All,
I'm in St. Augustine, FL for a 2 day getaway. Really cool town. Lots of interesting history (it's the oldest city in the US). We are going to do one of those hop on, hop off trams today. Easier for me to get around. We are going to an alligator farm—supposed to have the most variety of alligators in the world. Yikes. We are staying in a beautiful Victorian bed and breakfast. Can't wait to see what's for breakfast.
Now, I need to let Tanya know that I'm thinking of you my friend. I will be in touch when I get back so we can have a long girlfriend talk.
Hi Mel….always thinking of you. I feel like you and your DH need a 2 day getaway. Just the two of you. It would do you good to get out, away from the day to day. Gives you a new perspective.Mae, so glad the last hurricane was a non-event for you.
Rosie, hugs for you. Hang in there.
I jus found out that my BIL has Covid. He's been vaccinated, but I'm wondering if that even matters anymore. He's really sick, so hoping he recovers. He is getting the antibody treatment, so we'll see how things go.
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Oh my goodness Boo. I am hoping your BIL is ok ask well. This thing is scary. Plain and simple. I don’t even know if they know anything really. It’s never going away. Just like the flu. But in some cases worse of course. Sending you hugs, if DH and I went anywhere we’d need two beds a large Industrial sized fan, he snores terribly and I would get a lick of sleep I don’t sleep in the same room as he does. Sometimes i am in pain and up a lot, none of us would sleep.
Pocket duty!!! Available! love to all
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Moth,
So very sorry about your friend. Way too young. This disease is a robber of life, but we have to fight for as long as we can. My hope is for the day we hear “cured” instead of “fighting”. I know we are all tired of fighting.
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Laurie - love St Augustine. We did the same thing with the trolley. Sorry to hear about your BIL. The vaccines were supposed to help prevent serious illness in breakthrough cases.
Rosie - HUGS to you. Prayers for your receiving answers.
Mel - this fatigue is pure crap. It doesn’t help that I’m fighting long haul covid fatigue. We’re moving to our retirement home in late October early November. When we moved here 2 years ago I was able to do so much - unpacking, taking boxes downstairs. Now a trip from the basement takes forever. Just pace myself. Saw my Ortho for my last injection of hylauronic gel in knees on Monday. Hopefully can delay need for knee replacement. I think the only part of my body that is not bone on bone is ankles and elbows. But a word of warning -those knee injections were one of the worse procedures I’ve had. The amount of gel that goes into the knee space and the pressure made me swear in foreign languages. And then my back….oh well what’s a mother to do?
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Goldens~my goodness I can't even imagine. The fatigue is enough of a battle. Bone on bone is just awful. I wish there were simple answers for what were all needing.
Moth~ I'm sorry about your friend. Sometimes life hands you a shit pie. Take my advice and toss it. It's not very good. The worst things are things we can't control. Sending you bug hugs
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Mel- I understood when you said "I want to feel great. Doing great and the way I feel daily are not great". I understand. I was talking to someone yesterday and I said I don't feel like I am living life. They asked what I meant. I said I do not work anymore, hidden out due to Covid, no church, no out with friends, no volunteering. Some is because of Covid, but also some is the fatigue. I don't feel like doing those things anymore. A church friend invited me to go with her and her friends out for a day--- out to eat, a drive in the country, maybe stop at an orchard for some fall apples. Sounds fun. But... I don't want to go somewhere busy (restaurant or orchard) due to Covid risk AND I don't feel like an all day trip. I would be exhausted. I could not keep up with them. And their in their 70's !!!!!
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First of all, good things for all that are struggling - moth, Rosie, Mel, Goldens, Candy... more, I can't remember names.
Mel, hubby and I often get two queen beds when we travel, for all the reasons you mentioned, except the snoring, because hubs has a CPAP - life changing.
Booboo - I love St Augustine. I wonder if you're staying at our favorite B&B, but there are many. We may try to get there before we move, but it's still too hot for us. Maybe October.
We're interviewing realtors this week. Should have the house on the market next week. I've been working hard trying it get it ready- purged and deep cleaned. I'm exhausted. All I can say, is if you think you might ever move, start purging now! Lol. We used to move every 3-4 years, and I was good at keeping things "light"', but we've been in this house for 13 1/2 years and this town for 18. I didn't even buy raffle tickets for an adorable Halloween wreath for the door, because I don't want to have to pack "one more thing".
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Moth, I am sorry to hear about that as well, I am thinking of you.
Laurie, glad you are having such a good time, hope you and Tanya get together soon.
Candy, I hear you about the fatigue end of things. I feel the same way a lot of the time, it honestly is a struggle for me as well. As far as covid stuff, we have stupid people protesting the mandatory vaccines at certain places like hospitals. They protest at hospitals because it gets more media coverage than if they went to our provincial gov't Queen's Park. We are not having many here and I can say I don't support unmasking or not vaccinating myself though I keep it to myself.
Not doing much today. Drying clothes on a heated rack. Older DB and I went out last night shopping and I expected him to offer to take a look at my broken dryer. He told me just to junk it and not bother repairing it. Since I spent 500 dollars on it, I can't see not repairing it since I really cannot stand towels that are not soft, also can't hang outside as no balcony. I decided that I will call a repair place and as long as it is not more than the washer itself, I will get it repaired while I have enough money to do it. Not willing to put it in a landfill or just leave it in the house. Not sure why I was irritated at the suggestion I just give up on it but I was.
Edited to add that the dryer will tumble stuff for a while without heat and very brief warm. I can use it like this because I can dry stuff before it goes in, towels feel the same so for now I can hold off on the repair place and use my racks for most of the drying and toss in for a few minutes of fluffing. I am very happy about this. Cautiously optimistic as I don't require heat to dry stuff off, will give it a few days to see if it is sustainable.
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Moth - I missed that note about your friend - damn cancer! So sorry
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Moth so sorry to hear of the passing of one of our sisters. I steel myself up before I come on sometimes bc of the potential for loss.
Rosie I hope whatever support we give here is helpful in some way.
Candy Maes providers plan sounds very well thought out and flexible. Hopefully this can be done for you. That time you spend driving is fine until you don’t feel well…
Mel my sentiments exactly. We worry about our adult children grandchildren etc. who will help them when we’re gone. Will they have enough to get through? Really my daughter moving in with the 2 grandkids is therapeutic. I look forward to them coming in from school doing HW fighting and playing together-it’s normal.
Goldens I used to get those injections in my knees and the progressively got more painful. Ugh. The first one is bad enough but trying to get ready for the next one after you know what’s coming is the absolute worst. I started using acupuncture in 2012 and stopped the injections altogether in 2013. I do the acupuncture weekly and my insurance covers it 100%. I did have a shot in one of my ankles once at the ortho doctor it was worse than the knees and provided zero relief. And as you say don’t even mention the back. Hope the numbing kicks in soon.
Booboo so happy you got away. I have three vaccines we should be able to go somewhere. Let me know when you’re ready for me to play with teddy bear 🧸 again.
Tany
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Moth, I'm so sorry to hear about your friend. Tanya, I hope you get what you need to help you deal with the difficulties you've been having. I hope you and Booboo can meet up again soon,
Mel, I agree that you and DH need to get away, there are a lot of 2 bed options to give you the space you need and still enjoy a break.
Candy, I'm so with you about the fatigue and not having energy to plan even a day outing and that's without the added risk of worrying about crowds, masks and the risk of getting covid. I would love to take Finn away to a holiday park for a weekend but I worry about taking him and then not having the energy to do anything with him.
Mara, I've found that if you give your towels a good shake before you hang them up they are soft and fluffy, which is great for me as I have never owned a clothes dryer, I'm lucky, it never snows here so I dry all my clothes outside in the fresh air and sun. If we get a few rainy days I put the clothes airer under the aircon vent .
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I don't know if this will be helpful to people but as most of us know, cancer and our treatments can greatly weaken our bodies and cause fatigue. But from my experience, pushing myself to go out and do things, actually builds back strength and stamina. Sometimes after a full day, I am completely exhausted, so then I rest. But I notice for myself, if I am inactive, I quickly get weaker. I have to work on exercise, movement at least 5 days of the weak. So I am encouraging those of you who feel you can't do much, to give things a try. You might be surprised by what you can do-and you can always take breaks if you are out with friends, just say you need to sit for a bit. For those of us lucky enough to get the 3rd booster, I think our Covid risk is really very low. Each of us has to make our own risk assessments, but for me, I'd rather take some small risks and enjoy life now with other people, because I know I do not have endless time to wait and Covid could well be with us for at least another year, if not five.
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KittyKat, I think I've found a way to still have soft towels. They dryer I thought broken will tumble things without heat so I can dry towels on my heated dry rack, take it to my bed, steam the towel and toss it in the dryer, the ones that I tumbled after all this do feel so much softer now, even the way they felt before was not the same.. The warm setting will also work too so I get the tumbling I want so no repair needed. I do appreciate the advice though, very helpful. Looking more like I will not need to spend money at this point on repairs.
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RosieRed., I hope all those tests and labs provide some info your docs can use to help you. That sounds pretty exhausting to go through all those, and not feel great on top of that. Sending a hug.
Booboo, That’s great that you’re seeing sights and enjoying yourself. I hope your breakfasts are fabulous. Sorry to hear about your bil.
Chicagoan, I agree with your post that pushing ourselves can actually give us more energy. A couple days ago I actually felt worse though, which was weird. I went for a walk around noon and came back completely wrung out. I felt wobbly and was sweating like crazy. It was probably due to the heat and humidity because we had cool days followed by a big spike up. Dehydration, I’m thinking. My favorite exercise is a water exercise class at my local rec center. The water feels great and the activity is more gentle but still gives my muscles and joints a little work to do. I also like that I just follow along and don’t have to think too much, haha.
I had an MO appt yesterday, not much new since scans were good. I did ask about whether I should get a third vaccine shot and how soon, and I was surprised that she recommended I wait a while because studies are showing that Moderna is holding protection longer than they thought. I know there are so many unknowns with us, but I’ll follow that and hold off for at least a few months.
Hello to everyone, I hope you’re having a good or pretty good day.0
