My Husband, My Life, My Love, My Family, My Cancer
Comments
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I agree, Candy, that your friend with COPD should be home. I know, right? The liability of “looking good”. I am relating to my grandparents’ generation who lived through the war and the rationing. I feel like planting a Victory Garden. Fortunately no other symptoms have followed my Saturday Night Fever. Today I finally got myself out and on a walk and it was glorious. With no dance class and no yoga, walking will have to be my exercise. Salute to Mara!
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Dear Mel,
I hope your DD gets home soon. I can't imagine what you are going through not being able to hold her hand through this. So glad for cell phones and FaceTiming. Hugs to you and your DD.
❤️ Suzy.
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Hi everyone,
I have been following along and thinking so much of all of you. I have been MIA as the first cycle of Erubulin really knocked me in the dirt. My MO has reduced the dose and I am already feeling so much better.
Micmel- I am so thinking of you. It must be sheer torture to have your daughter in the hospital and be unable to be there. Congratulations on your recent scan. Such great news.
Mara-we need you to stay upright! We still have fresh spinach in our grocery store; could I air freight a couple pkgs to you!
Candy- I agree, sometimes it just feels like too much. It's a challenge to go one day at a time.
Santa, it is so awesome that you are moving your parents. The house sounds just right.
It is fairly quiet here in Maine as far as Covid 19. We have 17 cases right now. Lots of closures. I still can't figure out how people eat toilet paper. Grandson home from school and we have a learning packet for daily work. Thank heaven we just put the basketball hoop back up. I'm praying all of these early precautions help flatten the curve and keep everyone safe.
Shout out to Tanya, Rosie, Shetland, Sondra, and all other sisters on this surreal hellish journey.....
may the force be with us...
love, Mary Jane
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Shetland, can you join the appointment by phone of FaceTime? These are special times and i bet the doctor would be fine with i
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Shetland - I hope when you got out on your walk you made sure to strut, carry a paintcan, and stuff two slices of New York style pizza in your face at the same time
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I have a question to run by you. I want to see if I am not correct in my opinion. I consider myself disabled due to the Stage IV that took my ability to work away, that cost a breast and brain surgery. I don't consider my disability to my walking or physical ability but I think a disease that may kill you should give you that. My gov't gives me disability.
The reason I am asking is my local grocery store is letting elderly and disabled people shop first in the morning which I totally agree with. Their definition of disabled only covers mobility issues. I can also understand that but given that I am immune compromised, not as bad as chemo counts, but white cells are knocked down. Would it not make sense I should be around fewer people. Just wondering out of my own curiosity and if I am being too picky.
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Mara-Don't you have a letter from your government indicating you are disabled? I'd bring that in along with my ID and go shopping.
Mel-Hope your daughter is better soon. Must be so hard not to be at her bedside.
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Micmel, thinking of You and your daughter. Hope it is resolved soon and she is back home very quickly.
I had good news from brain scan. Only one lesion remains, out of three, and is reduced to 1cm. Treatment should reduce it further, so here's hoping. Had my 52nd cycle of chemo yesterday. Still doing its job. We are lucky in our village, no shortage of anything.
Hope all you ladies can get the food you need to stay healthy. Take care everyone xx
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I don't have a letter but do get paystubs from my disability every month. I just think this is another case of well you can walk and don't look sick. Disabled does not just mean mobility issues. Being older is not the only factor in your immune system. Not sure if going to bother pursuing. It is only one hour per day which is before I get up. We will see. I say that because I have been out and about at different grocery stores so I can't exactly say I have stayed home all the time.
Minnie, so glad to hear your brain scan went well.
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Mara: I would call the manager of the stores you like and explain your situation. I bet they will say "you qualify" or the manager can put aside a flat of beans for you to pick up whenever, or find some other accommodation. If you call and present the problem I suspect they will make an effort to solve it. The problem is: you look too good!
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Yes, I think I do look too healthy and I don't have mobility issues. I did speak to the store manager and he is the one who said disabled means mobility issues.
I will let it go for now and still shop early in the morning as I have not been shy about going by bus. If I decide I need to go sooner, I will press the issue.
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Minnie~so glad to hear of your news! Atta girl. Glad you’re safe and sound. We are all hunkering down. Two weeks seems long when you can not go out much! Stay healthy.
Mara~when I tell people I have a disability. They look at me funny. Like I’m lying. I agree we look too good, good thing your strength makes up for others stupidity!!
My DD is still in the hospital, she’s in pain and they are testing. I guess they don’t want it to happen to her again. She’s going crazy. No visitors. Momma bear 🐻 doesn’t like that. But understands the reasoning. Hope she can come home today! Thanks for asking. I hate feeling helpless!
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Mel, I am so sorry about your daughter and not being able to have visitors. Though I can understand why, I can still empathize with what you both are going through. I will cross my fingers she gets to come home today too.
I also like what you said about strength making up for stupidity. I would not want mobility issues in order to appear disabled. I could go out bald with my craniotomy scar showing and see what they say then. I still might write corporate a letter if I still have a bee in my bonnet later.
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Mara~
I think you’re wonderful. Write that letter They should be informed of ignorance.
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I probably will after my appointment. I have the bee up my bonnet about it. Thanks for the encouragement.
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Mara- I called my local Dollar General this morning. They advertised that the first hour of business each morning will be for the elderly. I told them I am 49 with cancer and on treatment. She said that was ok, I would qualify. I then thought well what if she is not on duty and another employee says No. I thought if I go there I will bring my path report or some such paper- last visit summary from doc visit or my last lab test results maybe- to prove I am on treatment. I have hair, not skinny or sick looking. They may think I am lying. I did read an article though that some are wondering if this hour set aside for the high risk group is a good idea as we will not be socially distancing ourselves and we are still in a crowd and could transmit the illness. Good grief. I have a sister that told me my other sister ordered online at her local Wal Mart and was directed to pick up items at a Wal Mart 50 miles away and not till next week!!!!!! I am going to try online shopping at my Wal Mart for the first time tomorrow. I bet I get told the same thing.
Minnie- Woohoo on the good scan results.
Mel- Sorry you cannot be with your daughter at this time. Hugs.
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Mara~How did that letter turn out? Hope you get a nice gift card out of it. They should give you the moon...
Candy~Thank you for asking about my DD. They are keeping her again tonight, three days. They want to make sure she can pass harder food. He also said there may be a polyp that they are seeing at a small stage. Which could be an irritant. I'm a nervous wreck of course. I can't be with her. breaks my heart.
I'm used to being home. I spend most of mytime home. But it seems like being told to stay home makes me feel worse somehow. Like before I knew if someone asked me to have lunch I could if I felt up to it. Now, not even happening. It's starting to trickle down even more. My son works for Ford. They just shut down production. Which means sooner or later their will be no need to sell the parts associated with vehicles. Service. Is different They are all worried about using vacation time. Just to pay their bills. Then what? I don't think people should have to go that route when they've done nothing wrong. Hard times over and above and along with MBC.
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Mae~ you ok? Hope all is well with that insurance issue!
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I walked over after my infusion and gave it to the manager. He gave me a 25 gift card and said I am welcome to shop at the time as the elderly, disabled crowd. I thanked him, but was happy he understood disability has different appearances. As to whether I want to shop at 7am, probably not, I just like having the same option.
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Mel, I hear about having to be socially isolated if you are not used to it. I hope you can facetime with people so it is not so lonely for you. I agree, not being able to choose to get together right now is tough. I find it easier to deal with as I am alone more of the time than not. I will look forward to when libraries and everything else can open up again.0 -
Hi everyone! I am sharing something I posted on Facebook but can’t figure out how to copy and paste it here, so sharing a photo of my share instead. Any input or recommendations Greatly appreciated!! Love Philly
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Philly, that sounds nuts to me. When my MO is away, there's always someone covering. Is this a solo practice? I'd ask to see somone else.
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hi Moth,
right??!! I'm sad to consider it may be time to change MOs
it is a very well renowned teaching hospital here in Philly. it feels nuts to me too??!0 -
Philly my heart goes out to you. The one thing you can do is eating your healthy foods and herbs. It seems as though there should be another doctor at the practice to handle patients in emergencies. Waiting around doing nothing and not knowing what the cancer is doing is unnerving. I’d be crying too. There should be someone available at the practice to explain how the cancer is slow growing or some reason as to why it’s not being treated right now! Do you have access to MM? I know there’s a guy that used RSO and it worked on his cancer. Just one thought bc I know you want to DO something. Check in with Cure_ious and Pat from the ibrance thread. They usually have excellent suggestions.
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Hi Philly,
Sorry to hear you're dealing with this. It's stressful.
.8 neutrophil count is probably bit low to start. Can you take another blood test in a few days? If so, and your number has at least a 1 in front of it, I would say start your next cycleand continue until you see your MO. They are probably a bit on the low side and not bouncing back as they normally would, because you're still fighting off that flu bug. Psychologically I think being on treatment would make you feel better, until you have some answers. It would for me anyway. Sorry...shouldn't have been presumptive on how you are doing psychologically. I just know it would stress me out.
Hope it all works out.
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micmel, I’m ok, just in a funk again. The small progress made eating has been defeated by the return of nausea and vomiting. I’m told it’s not brain related and it feels like it’s my stomach getting stuck in sudden contractions. I’m being referred to a GI specialist soon. I’m just really sick of being sick. The insurance issues got resolved, which is a relief. Just tired and cranky I guess.
I haven’t caught up but send love to all.
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Mara- you could of just walked in the store and ripped that wig off! I wonder how they would have liked that!
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Oh Mae, I am so sorry to hear that. I empathize with being sick of being sick. Feels neverending and it has gone on for a long time since your brain surgery. I hope your body will cooperate for you soon or that there is some drug that stops the nausea and vomiting.
Philly, I am so sorry for you as well with your MO being away and no one minding the office to answer questions for you. Hope they can give you information soon on what next steps might be. April 1st is a LONG time to have to wait when you are anxious to find out about next steps. It is easy for the nurse to say it is not an emergency. This is your life, your body you are worried about and you need answers. Soemone should have been available even when MO was away. Not a good way to treat patients.
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Mae- sad to think of you continuing to suffer. I wish I could wave a magic wand and make it go away.
Philly- when I was frustrated with my father's care, I ended up in his neurologist's office standing in front of the receptionists with tears streaming down my face. It was very effective. You are getting a raw deal and it shouldn't happen.
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Minnie-glad all is OK in sunny Spain. Thrilled with your good news!
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