This post is about ME, all about ME. I cannot talk to family yet, and have no desire to dump this on my kiddoes when it was commented on Sunday that we are really drama free right now! And it feels so good!
OK--
I have had this lump on the side of my neck for, gosh, weeks, since I first noticed it. Kind thought it was weird, but assumed a pulled and swollen muscle as I do a lot of heavy lifting in my gardening---
Lump doesn't go away, and now I am feeling that it's really tender and sore. A big hug from a g-daughter on Saturday had me reeling in pain. Sunday it was very noticeable--and more painful.
Just got back from my PCP who SAW it and said "Holy Cow, nobody but you has noticed this? It's huge!" He palpated my neck, both sides, and said there isn't ONE, there's at least 3 lumps. The big one is the size of a lime, the other one, the size of a ping pong ball and the little on the size of a BIG marble. He had me feel them and then I could feel that there are 3 of them.
This doc is calm beyond belief, but he had me scheduled for a CT scan for Thurs am or sooner if my ins oks it. Blood tests for infection and he did put me on an antibiotic and said he'd be calling me daily.
Ok--like I said, this guy is SUPER calm. He wasn't today. He actually looked really concerned and that scared me. I said "What's your first take on this?" He paused and said, "You're not stupid and you have kids who are doctors and if I don't give it to you straight you'll be calling them. It looks like cancer. I hope I'm wrong. Let's wait for the CT scan and move from there. It's NOT nothing, so we need to be aggressive. These lymph nodes are ginormous."
So---wow. I realize he wouldn't tell a 'regular' patient this right off the bat, and of course I hope he's wrong--but there are some other symptoms, which I won't go into which is why he said he thought first off, the big C.
I don't wanna have cancer.
I'm not saying anything to anyone b/c if he's wrong, I'll upset the fam for nothing. But I feel like I could come here and spill my guts and ask for prayers and I'll feel them.
So--if you are a praying person, please offer one up for me that I can be strong for whatever this is. If you're a 'good thoughts out in the world' send some for me.
I'll be honest. I'm slightly terrified.
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 :)
You must’ve had tests by now..what are results?
hugs🤗
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.
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.
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.
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
And for my family to quit squabbling over politics.
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
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.
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!
stay strong....*hugs*.
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!
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.
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.
{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.
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 🙏
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!
It's the NOT KNOWING that makes me nuts.
Dh did finally get up yesterday about 1 and went in to work for a while. I feel so sorry for him , really, just not being able to deal with all this.
I slept late and came up and he had gotten all ready for work and had gone back to bed. I said "Oh, no sir, no, no, no. Get up and GO!". Once he gets a Diet Coke in him and gets to work, he'll be fine. He asked if he shouldn't maybe stay home with me and I let him know that he is kind to offer, but as he doesn't DO anything to help, he should just go to work and keep piling up the OT.
He did haul the laundry hamper downstairs for me. And left his dry cleaning out for me to run in for him. SMH. I am not supposed to bend over with any weight in my arms until next Monday, but I think I will do laundry. It's not bad and he doesn't know how to run the W/D.
Last night as I was making dinner, my mother called. SO WEIRD. I answered and she starts in "I have been just worried out of my MIND about you! Do you know I have called every hospital in the valley?' No, I didn't know and didn't care.
I asked her why she didn't just ask any one of the 4 adult children who still live at home with brother and his wife and her (I SAW his wife at her work on Sat) how I am? I also said, "Why didn't you call one of the sibs, or one of my kids. Why in heaven's name would you just start calling HOSPITALS????????????"
This is just mother being her narcissistic self--'hey, everybody, look at me! Poor me, my little daughter is just riddled with cancer and I can't even find her!".
Her little drama actually made me laugh pretty hard. I told her I was FINE and that she has my phone number and simply to call it if she has questions. Same number for over 40 years. This makes, maybe the 8th time she's called me in 43 years. Same cell phone number for the last 15.
She actually seemed let down that I am no sicker. Sorry, mom.
My DH and I play a sick game called "who's mom is crazier?" Usually it's his, but I think this little completely ridiculous call wins mom the crazy statue for a while. DH's mother has not reached out in any way, and will not. Just as well.
Being able to see some humor (gallows humor, I guess) in all this has helped. I am swollen like a puffer fish as the surgery did leave me looking beaten up---but hey, each day is a new day and I should not require being stuck anywhere for a few days.
Thank you all for the prayers!! I know they are being heard and answered and I am beyond grateful for them. Y'all are wonderful!!!!
Glad that you have family support. DH is probably still in shock and scared! You know how men can be!!😱
Hugs😛
From a fellow possible Aspie's wife too. My DH has about as much compassion as a robot when I'm sick. Daughter makes a fleeting sad face. My son (who actually has a autistic high functuoning label) shows more empathy / sympathy than either!
Treat yourself to whatever makes you feel better.