Sparhawk's wife's journey

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#1
Yeah, decided to start a thread about this, just a place to put everything that is happening with this.

We've been dealing with my wife's Lupus for over 25 years now, so we've had some rather scary stuff happen. She's had the pain, odd reactions to some things, and even a scare with kidney failure (diagnosed with stage 3 failure, went vegan/vegetarian to fight it). So we've lived with this giant cloud over our long term future for quite a while now.

So, wife went in for a mammogram on January 4th, just a routine thing. Mammogram showed some spots of concern, so a ultrasound was ordered and conducted. They decided that it needed further testing. Had a biopsy of the spots and lymph nodes nearby on January 9th. Test came back on January 11th that it was breast cancer, but not in the lymph system. Told we would be getting a call to schedule stuff with MD Anderson cancer center in Houston. Didn't hear from them on the 12th. Weekend, MLK Holiday, didn't expect any calls. Icepocalypse falls on Texas the morning of January 16th. Houston closed January 16th and most of January 17th. Still haven't heard from MD Anderson scheduling.

So today, my wife called her local doctor to make sure that everything had been forwarded to Houston. They check, and confirm that it was sent. So they call down there, within an hour wife is on the phone doing the preliminary info dump to get into their system for scheduling, told that the actual scheduler is in a conference and will get with her right after lunch. 3pm rolls around and wife calls them back to find out if there is an issue since she hadn't heard from them. Scheduler is dealing with a case from hell, but her assistant is able to get the scheduling on the calendar.

So we're heading to Houston's MD Anderson main campus for appointments on February 5, 6, and 7. Exam, surgery, and oncologist on the consecutive days. Wife has to get her past 3 years of medical records with her physically (on disc) and we start at 6:30 am on that Monday.

Until then, we're just dealing with family trying to be too helpful (for now).

BTW, if the oncology portion is on the heavier end of the scale and she loses her hair, the wife is planning on getting a purple wig. This is not a joke, and she means LSU purple.
 

Dave

Staff member
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#2
Dude. Fuck House. I mean, cancer.

Good luck. Let us know if there's anything you need. Sometimes positive vibes just don't cut it.
 
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#3
BTW, if the oncology portion is on the heavier end of the scale and she loses her hair, the wife is planning on getting a purple wig. This is not a joke, and she means LSU purple.
In spite of everything, I love this part, and I bet your wife will rock it.
 

GasBandit

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#5
Hope it goes well. You seem to have caught it nice and early, at least.
 
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#6
Wife got her records from locals yesterday and today, so that is all set to take with us. Something that wasn't told to us, but we read in the charts, is that the locals are calling this a class 3 cancer (most rapid growing) but didn't assign a stage to it. Appointments in Houston start at 6:30am in 12 days.


Edited to change the word to "stage" from "state." Stupid typo.
 
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#9
I'm so sorry to hear that this is happening to your wife. After having to deal with Lupus for so long, she's had more than enough to deal with.

As much as I hope that she doesn't lose her hair, the purple wig does have potential :)
 
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#12
I have to say that the tension of waiting for this series of appointments is starting to get to both of us. Not fighting or anything like that, but the tension about what is waiting ahead of us is definitely there. She keeps looking at the worst that can happen (don't blame her at all) and I'm trying to keep her spirits up and that it can be much easier than that. Just gotta keep going and get through what is to come. It's out of our hands at this point in time.
 
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#13
We're about an hour away from leaving for Houston. Getting the last of the place closed down, making sure electronics are off, trying to find that dang charging cable for the Switch... getting all the trash out, that type of stuff. First appointment is 16 hours from now, and we should have some answers and plans by Tuesday afternoon. If the appointments are done early enough tomorrow, we'll take a short trip down to Galveston for some seafood and (as my wife calls it) ocean therapy. Be on the lookout for some freak storm to pop up if I step onto the beach down there, hasn't failed to happen yet.

Please pray, send good vibes, keep us in your thoughts, and just wish us well. We've tried to prepare for the worst, and hoping for the best.

Hopefully I can post some good news on Tuesday.
 
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#20
First day is in the books. Mammogram and ultrasound were first, after those they canceled her lyphodema appointment, said it wasn't needed. Tomorrow we meet with a surgeon and Wednesday with a oncologist.
 
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#21
First day is in the books. Mammogram and ultrasound were first, after those they canceled her lyphodema appointment, said it wasn't needed. Tomorrow we meet with a surgeon and Wednesday with a oncologist.
I don't know anything about anything, but this looks like a good thing! Is it a good thing? Please let it be a good thing...
 
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#22
We have a true diagnosis, stage 3 grade 3 triple negative breast cancer. We still have a PET scan for later today, plus genetics and meeting the oncologist tomorrow. Treatment will likely start with chemo for 5-6 months, then surgery after that. Possible radiation after the surgery.

It’s still early, but this is an aggressive type that we’ll be attacking as aggressively as possible.
 

Dave

Staff member
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#23
If you need anything you let us know. Fuck, man. Give her hugs for us.
 
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#25
Yeah. Best of luck to both of you, I sincerely hope she'll pull through and you'll be both able to look back on that big '18 scare and hug each other about how well you weathered it together, on a porch somewhere in 2058.
 
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#26
We have a true diagnosis, stage 3 grade 3 triple negative breast cancer. We still have a PET scan for later today, plus genetics and meeting the oncologist tomorrow. Treatment will likely start with chemo for 5-6 months, then surgery after that. Possible radiation after the surgery.

It’s still early, but this is an aggressive type that we’ll be attacking as aggressively as possible.
My mother is a breast cancer survivor (almost 15 years now, I think?) She started with surgery, though, and did the chemo second. A family friend also started with surgery for her ovarian cancer. Is there a reason they are starting with chemo and not surgery?
 

GasBandit

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#27
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#28
I didn't read Gas' link, but the current thought is to beat it down with chemo, then remove the affected areas. Seems they've found that the patents are stronger for the chemo this way, and many times means they have to actually remove less overall.

Insurance decided to be a dick today and insisted that we have a CT scan and bone scan before they would pay for a PET scan. Those will now be on Thursday morning, and an extra night here in Houston. We're hoping that she will be able to do the chemo in The Woodlands, since that is closer to home and still part of the MD Anderson system.[DOUBLEPOST=1517966743,1517966506][/DOUBLEPOST]As to the lyphodema cancellation, they were able to get enough info from the ultrasound about the status of the lymphatic nodes. There are a total of 6 nodes that show signs of cancer, but they believe that its from the mass in the left breast, and not cancerous on its own.
 
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#29
Okay, here it all is...

Inflammatory Breast Cancer.Official diagnosis.

We'll find out tomorrow what the schedule is, but here is the plan.

She was put into a clinical study that will allow this to be treated very aggressively.

13 weeks of weekly chemotherapy, then 3 months of once every three weeks of chemo. Basically 6 months.

Then surgery, probably total mastectomy of the left breast. After about a month of recovery, 2 weeks of radiation daily.

Reconstruction surgery will occur at some time, so new boobies.

Been a bit of a roller-coaster day. We're tired.

Oncologist is a huggy type of person, that is difficult for me. We seem to have a really good team, they know their stuff, and that's why you go to a place like MD Anderson. They do this all day, not just a few times a week or month.
 
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#30
We're home until next Tuesday, she had a CT scan (with barium solution), Bone scan, mammogram, ultrasound, clip placement for location of problem areas, and 8 biopsy samples taken today.

Tuesday, the 13th, she has an appointment for a ECG and a follow-up with the lead surgeon ( Dr. Teshone), and a possible appointment with the head of her Radiology team. Radiology wanted a 30 minute meeting tomorrow (friday) but they gave us late notice on it and she was ready to come home for a few days, and it was the only thing for Friday.

Thursday, the 15th, she will go back to Houston for the insertion of the chemo port. Not sure of when the actual chemo will start yet, if it is not Thursday, I will not be going with her for that appointment.

We're close to getting this all started.
 
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#32
Not currently. The Clinical team has already started the process to get us on the list for the housing near MD Anderson for use during the radiation phase, 6 months from now. We've got friend and family plenty to help us for anything local and including travel help down to Houston. Right now it's just getting started, so it's difficult to honestly say we need anything yet. It will get tougher, there will be times, I'm sure, that she'll just want to quit and give up. I know we're gonna have to be looking for a new car, something that we'd already planned this year, since ours is over 10 years old now and has 145k on it. We're gonna be putting lots of mileage on a vehicle. We'll just have to wait and see from here. But I do promise to let you guys know. Just right now we're okay.
 
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#33
Guess one other thing that has to be added, because I'm laying it all out and it might help someone else in the future, we haven't started receiving the bills yet. We've had some copays, about $200 worth, and we know that will get much, much worse. Luckily, she has about a year of actual time off accumulated, I have 3 weeks of vacation (just used 4 days), 2 more personal days, and sick days (that I will lie to use), and thankfully a district manager that I knew long before he came to work for this company, and he's willing to get me any help that I would need.[DOUBLEPOST=1518182772,1518182680][/DOUBLEPOST]We slept at home last night, gloriously uninterrupted sleep on a "not like a brick" bed. Neither of us are sure we moved at all during the night, it has been a long week.
 
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#34
Chemo will start either next Wednesday or Thursday. We're hoping to be able to get the treatments on Thursday regularly, because it would probably work best for recuperation. The chemo port surgery is a little more involved than she was thinking, apparently if will be full sedation and attached to a major vein near the neck. We'll get through this, and it will all be good.
 
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#35
I hope the procedure goes well for her. Even though it sounds rough, having a port will make her infusions much better and prevent so many issues down the road. Repeated IVs can cause damage and scarring that make even blood tests difficult/impossible to draw.
 
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