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Midkid,

I’m happy to hear that you had some good news with the biopsy. You sound very strong and ready for the next step. I am still praying for you. And for your husband too!
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Midkid58 Jun 2019
Thank you--many people pray only for the "sick one" when the CG needs it more, in many situations. I pray for him constantly!
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Midkid,

I am glad to hear that the biopsy showed that the cancer had clean edges. That can make ALL the difference in the world in regards to the treatment and prognosis of treating your cancer.

I know what you mean about bone marrow biopsies--they sure do "BITE" you. I have to have them every 2-3 years to monitor my "Smoldering" Multiple Myeloma. I will be having my “Annual” CT Scan and Radioactive PET Scan this summer. 

Interesting that your eldest daughter thinks that her father/your DH has a “form of Aspbergers, minimally he is on the spectrum." 

Maybe it is for the better that your DH will be gone during your Chemo TX. That way you only have to be concerned about yourself. ❀

{{{HUGS}}} and Prayers 🙏
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Had an open neck biopsy yesterday and dr removed the biggest node. He said it had clean borders, no apparent 'finger like' growths, that cancers can get. Said it could not have gone better. Very good news.

{SIGH}

Much relief.

DH stayed home all day to 'take care of me' and of my DIL called to check on me, and she said "so, he's sleeping the day off, right?" But of course! He just---can't. The only thing I asked him for all day long was that he PLEASE put the trash cans out, I am limited to lifting. He didn't. He got out bed long enough to eat dinner and then watched TV and dozed all day long. Looks like today will more of the same.

He did ask what he could do and I had a little list---he didn't do a single thing.

Had a really good convo with my eldest daughter last week--kind of bore my soul to her about my total frustration at getting him to do ANYTHING around here--and she said "Mom, I think dad has a form of Aspbergers, minimally he is on the spectrum." (she and her dad get along, but I will say it 100% her doing). I guess this has been a part of her therapy for some years. I had never thought of it.

She said that his incapability to see things the way 'normal' people do is skewed. It's like he's missing a chunk of his thought processes. It's not that he doesn't CARE...it's like he CAN'T. Anymore than I could lift a car.

For example---he doesn't 'do' holidays or birthdays. If he remembers a gift, ok, fine, but his mom, for example wouldn't have received a mother's day, birthday, or Christmas gift in the last 43 years if I hadn't done it for him.

It's like he's missing a 'chip'..the compassion one. When we took care of his dying dad, he's just sit on the couch and make up conversation. If dad had a "blowout' it was all MY responsibility---it's so much easier to place blame anywhere but to take it on yourself. He sees black and white.

I'll find out next week what my chemo tx will be like. (If I indeed even NEED it). He was saying "but I have so much travel--you think you can move things around a little?" I just said "I do NOT need you. I will be fine. I have the girls and I have a kid to work the yard. If I do not have to feed him, I can do grocery pickup. He's a messy guy and I am always better off, sick, when he isn't around.

He was very upset and anxious as we traveled to the Hospital, and I kind of had to laugh at the thought that I was the one who had the surgery and HE was the one who came home and went to bed--been almost 24 hrs so far and I don't think he's getting up today. A friend brought dinner and I did dishes and cleaned up a little. I am hiring my older g-daughters to come clean on Sat and the younger boys to pull weeds.

Father's Day--DH s getting 2 enormous glorious, fabulously soft feather pillows. Might as well get him what he'll most enjoy, right?

Ah well---one day at a time. Echocardiogram on Monday, more blood tests, talk with oncologist, Thursday is the "treatment" roll out. I'm ready to do this.
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Midkid,

Good to hear from you!

Glad that your oncologist is a likeable guy.

You are in our thoughts and we are all here rooting for you.
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I'm sending you love and prayers MidKid! You are one of the strong ones on here. Hang in there.
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Good morning, I’m sending prayers up for you right now. The good thing about this is that it’s detected. Sometimes we can be in extreme denial when it comes to our illiness and dealing with it. I need you to continue to pray and try to have a positive outlook.You will be fine in Jesus name!!! You will beat this!! God Bless You!!!
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I can't find my way back here to the original question--what's the secret? If it's simply to remember--forget about that, I've enough tranqs in the past few weeks to stall a horse--


This week--met my personal oncologist (VERY warm, sweet guy. Talked to me for over an hour, explained EVERYTHING.) Had a bone marrow biopsy. OMG. Well--that's over, but WOW, did it hurt. Bunch of blood tests.

Back the next day for the PET scan, which revealed that the cancer is in ONE area of my body--my neck!! I was so worried I'd light up the scan like a Christmas tree!! This is really good news. Less nodes involved= hopefully less TX.

Tomorrow I will have the largest node removed for pathology and then it's a wait and see game while they decide what TX to use. I'll have a rough week, recovering from surgery, and DH is struggling mightily with his 'feelings'--but all that aside---I'm grateful that the cancer hasn't spread all over and that I have such a great place to go for Treatment.

I have felt the prayers--truly. "Thanks" doesn't quite cover how grateful I am.

More later.
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Grandma1954 Jun 2019
(((hugs))) Glad things are looking a bit brighter. Continue to take care of you!
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Hey Midkid, how ya doing? I'm sure it's been a busy week for you, but I wanted to let you know that I'm thinking of you. Here's to hoping that the Drs find that the "Nasty Invader" has been caught early, and that your treatment plan will be gentle and swift! Hugs! ❤
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Talked with Dr Joe yesterday when I skyped with the family. (No kids present but the 1 yo and he certainly doesn't get it!)

It SO HELPED to see Joe and ask him specific questions and get the answers. He did his PhD in "fake blood"--best way I can explain it--so he is VERY familiar with all the terms and such.

He's off this whole week and I wish HE were going to my appts with me, but of course, not possible.

Got a couple of cards from my sisters, and a visit from my HS BFF.

Little miffed my mother can't pick up the da8n phone and call, but I know she's just not going to do that. Oh well. She's barely a part of my life anyway.

Dh continues to "hibernate" as in, he sleeps if he's not awake watching movie after movie. He won't talk about this. My SIL was here and was asking questions about me, and DH could barely talk about it. kept saying that b/c we don't have the 'platinum answer' (the actual node)...he wasn't going to believe anything. He's not getting it, how much I need him right now.

His favorite way to decompress is to put the sunroof open and take 200-300 miles aimless drives. That, to me, is absolutely awful. He keeps asking me to go for drives and I just don't want to. So he says "I'm TYRYING to be supportive, you just won't LET me". I just have to wait until he decides to get on board and accept this.

Ah well--

Bad night last night. Fell asleep, but was up at 1 am, roaming the house, doing small silly things until I could go back to sleep at about 5. I think there will be a lot of those kinds of nights.

Again--I DO feel the positive energy and love flowing around me. I think that is the only reason I feel calm.

Busy week--and hopefully some more answers. I am trying to get a trip to VA to see my daughter before TX begins. Hopeful, but unlikely.

Thank you for your unconditional love--all of you!
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Smiles and hugs, Midkid.
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Oh midkid, I am so glad to hear that your prognosis is good! Yes, there is treatment ahead, but just knowing the likeliest outcome is to positive.....great relief.

stay strong....*hugs*.
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Midkid, how great to have a calming voice in the storm like Dr Joe! I don't think we've heard the last from him! I know you have a great relationship with him and appreciate his knowledge of all thing's medical.

They are doing amazing work in the field of Cancer these days, so put your faith in God and your Medical team, and begin doing everything thing you can to build up your strength to fight this unwelcome invader, like eating right, exercising and getting the proper sleep, and perhaps get into yoga or meditation might help too!

The more you can do to be prepared for the coming fight, the Better off you will be.

I know that you have an Amazing group of friends here on the AC who are praying for you every day, and we sure appreciate the updates as they unfold as it is scary worrying about you, and nobody wants to overstep their bounds by asking too many questions in case you might be uncomfortable sharing, but we really do care about you and we are glad that you can come here to share and get things off you chest, I know I appreciate it, and we are learning right along side you too!

Hopefully now that Dr Joe has put your mind to ease a little bit, you can try to enjoy the rest of the weekend just take things as they unfold, there's no good that comes from worrying about things before they happen, as I am sure you are well aware of having dealt with so many of your husband's maladies over the years, lol! Take each day as it comes is my moto!

Thank you for keeping us in the loop, you are going to beat this nasty invader, I just know it!

Go and enjoy the rest of the day and do Something Really Special for yourself, you deserve it! Hugs my friend!
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Hugs Midkid!
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I just read your post and replies.  Big hugs and prayers.  Keep in touch.
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My amazing son-in-law just emailed me with the actual interpretation of the biopsy. It's not that bad.... I could smack the nurse who called me and inferred that I had an untreatable form of lymphoma, but couldn't say anything because of HIPAA.
Sent the entire biopsy report to dr.joe oh, and he interpreted it and send it back to me in a way that I can understand. Of course we're in the early days, but he said the outcome looks good, and not to Google every words I don't understand. I have been pretty calm, for the most part, now I am anxious to get treatment underway. It's still cancer, and it still serious, but it's amazingly treatable. I feel like the weight of the world has been lifted. Of course I will feel better after the node biopsy, but having things said to me in a way I understand... Wow, everybody needs a doctor Joe at hand.
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lealonnie1 Jun 2019
AWESOME! I'm so glad you have Doctor Joe to properly advise you!!! What a blessing.
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Dear Midkid, Hugs & a *virtual* basket of peaches & nectarines from our loaded trees! The fruit is virtual for us as well: the squirrels, birds, opossums & raccoons beat us to it every year!
People really don't know what to do at first. As more info comes in, it is easier to assess what can be helpful; what is really needed. You are so important to so many! I am sure there is a battalion of folks out there ready to spring into action to show you how much they care. Aprons on, spatulas in hand: they are just waiting for the checkered flag!
Spend time doing things that elevate your spirits & deflate stress as the testing & planning & procedures unfold. Remember to breathe, really breathe: stress can get your chest & shoulders so tight that you can only get in little inhalations.
Hugs & prayers for you & your family
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Mid

I’m glad you’re coming here

if you are up for it, go see a movie and enjoy some carefree normalcy this weekend

even with family, people shy away when they are not familiar with the trouble- very few people visit friends or family once dementia takes hold - it scares them and they don’t know what to say or do

my SIL is a 20 year survivor of lymphoma- she was told she wouldn’t last long

Statistics have no control over your journey
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Midkid58 Jun 2019
Doc asked me what I 'wanted' from this and I said "20 more years, then a peaceful death".

And for my family to quit squabbling over politics.
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Midkid, two sites which really are very good at explaining things in plain English are the NHS's - bless it - and Macmillan. I recommend them because they manage the difficult job of being clear without being simplistic or (unduly) frightening. Obviously the treatment routes and drug names won't be quite the same.

You'll find the NHS one at www.nhs.uk and the Macmillan one at macmillan.org.uk.

Macmillan is also exceptionally good on communication and support issues.

What a lovely thought to bring the pampering basket!

Don't, do not, imagine that people don't care. It is MUCH more likely that they do indeed care but are unhelpfully panicking.
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(((((hugs))))midkid. I would discuss it with your dr before making any predictions,

I have come to learn that doing things for other people in no way guarantees that they will return the favour. In fact, favours received seem to be forgotten quickly. I am sorry it is that way and it is understandable that you are hurt. Do something special for you today anyway.

I am glad that dh went with you and has accepted the diagnosis. That is something. He is not the only man who does not do emotions well. Lean on those who do. Prayers and blessings.

eta - I agree with cm. It is not that others don't care, but don't know what to do.
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An old neighbour of ours is currently battling non hodgkin's lymphoma so I was doing a little bit of online reading recently - you are right that there are just too many variables to make any sense of it. It is early days yet, there will be plenty of time to research (or not) when you know more. Do something nice for yourself, perhaps reach out to all those you want to connect with instead of waiting for them to make the first move. ((hugs))
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Got the test results yesterday--and couldn't make heads nor tails of them.

Positive for cancer, no doubt about that. BUT....as there are literally hundreds of mutations of lymphoma---I will now start seeing specialists. The word that was used was "lymphoproliferative disorder". I did indeed hit google as fast as possible. IF it's that, it's the lymphoma with a survival rate of about 20%. Hence we now see a hematologist. Like I said, I couldn't make head nor tails of it, so I fwded it to Dr. Joe. Haven't heard back which could mean I'm overreacting or he's on call.

ONE good thing, if that. DH has accepted that I have cancer. He doesn't do emotions, and can't bear for me to have them either. This is going to be hard.

My brother and his wife came by with a basket of "take care of yourself' things--I didn't see it until after they'd left. Just the visit was nice. It was their two daughters who came by with flowers early in the week.

As far as ANYBODY but my BFF calling or sending a cared or even acknowledging this---deathly silence. Gotta say, that HURTS. Somebody has a baby or a crisis in the family and I am on their front porch with a meal or candy or whatever. It's not tit-for tat, it just is what it is. But it is hurting that nobody seems to care about this.

Oh well---This week is a therapy appt, hopefully a node biopsy, a hematology appt and a PET scan. I hate the waiting.

I do feel pretty calm. Tears will flow at the oddest times, but that's normal. I think I am still in shock.

Life is nothing if not serendipitous. One of my son'd ex-GF's was the pathologist who did the report. There is no name attached to the record, so she wouldn't know it was me. So weird.

I have felt the prayers around me. I appreciate them so much.

One day at a time.
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Praying 🙏🏼 for you, Mid

You must’ve had tests by now..what are results?

hugs🤗
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Rabbits in the headlights, Midkid. They don't know what to say or do, so they're saying and doing nothin'.

We all know, because we've been hearing it forever, that you're *supposed* to speak up and act normal and be supportive and let the person you care about lead the conversation. But when it's you, it's different.

Forgive the ones you mind about and ignore the others. When you know what you want them to say, you can take matters into your own hands and tell them what you want from them.

I have to say, that was a pretty productive day by my own "puddling around" standards! I think I'd be sucking my thumb in a corner. You are allowed to do that, too, you know, but I agree that if you're looking for ways to distract yourself it's all the better to get a nice tidy garden out of it :)
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Midkid,

I am glad to hear you worked in the garden and did some organizing. It is so good, when we are waiting for life to happen, to continue with the everyday activities that bring normalcy to our lives. I am continuing prayers for you and your husband.
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Thanks, all.

Just bummed around the yard, deadheading some flowers as my 'yard boy' mowed the lawn (He's a friend's grandson and has been in trouble in the past. Can't get a job until he passes his court appearance next week, so he's been working for his grandma and for me). Then I got the weedwhacker out and trimmed the lawn, then blew all the grass into a garden. I call this a 'puddling around' day.

Started the endless task of organizing the office and tossing old papers. Started a 'cancer' notebook which will hold ALL the info in it. I am already feeling spaced out as heck and I'm not taking anything that should make me feel that way. Just past stressed out, I guess. I want to get going and get this OVER with.

Interesting who in my family has bothered to drop by or call. 2 nieces (sisters to each other) came by with flowers on Monday and my brother (these girls' dad) called to see if he could come visit, but not until 9:30. Nice thought, but no thanks.

I have heard nothing but crickets from the rest of the family. The silence is DEAFENING.

Gotta say---this hurts a little.
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Riverdale May 2019
I can see how it hurts or rather imagine. Certainly it would have been reassuring to hear from some kids,grandchildren but don't know their ages. Maybe they need to wait until Friday so they know more about the situation. But yes it feels bad when we are going through a difficult time and feel deep down that the offspring we produced,nurtured and raised as best we could does not reach out. It takes a certain quality to make that move despite the busyness of the lives they lead. I hope you receive that as I hope the results you receive tomorrow can be met with strength and the sheer will you represent.
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Whatever the result, we are here for you. 🙏❤
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Midkid, praying for good news! Hope you can find something to distract you from worrying, but I know it's difficult. Take a relaxer if you have one and turn on a good movie or something and enjoy some takeout! Wishing you a peaceful day! Hugs!
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Dear Midkid, fingers & toes crossed for you as you await the biopsy results! Prayers for you & your family & for all the medical professionals who will organize your care plan.
I did find it funny that your doctor looks so young to you: I have shoes older than most of the doctors we've seen in the past few years!!!
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Midkid, you might be able to make DH's head explode - and thus stun him into silence, at least temporarily - by pointing out that it could be both. What makes him think that cancerous tissue is immune to infection?

I hope it IS an infection - though it's not "just" anything, is it. But the only good thing about any of this is that you're not having to wait long for action, and well done that doctor.

Get a pingpong bat, paint it white, and write STOP TALKING on one side and LISTEN on the other. Then you can just hold it up when you can't take any more.

I'm not unsympathetic to him, because when you badly badly want something to be true it is almost impossible not to keep on saying it, so that's almost sweet of him, really; but he'll have to find a way of expressing his fear that doesn't stress you out even more.

Mind you. Could the irritation be a useful distraction for you?

I'm glad you're not being kept on tenterhooks a minute longer than can be helped, anyway. Thinking of you, what are you doing with yourself today?
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Definitely praying for you, BIG HUG
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