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Sparhawk's wife's journey

#1

Sparhawk

Sparhawk

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.


#2

Dave

Dave

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.


#3

Celt Z

Celt Z

Sparhawk said:
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.
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In spite of everything, I love this part, and I bet your wife will rock it.


#4

drawn_inward

drawn_inward

Best of luck Sparhawk and especially your wife.


#5

GasBandit

GasBandit

Hope it goes well. You seem to have caught it nice and early, at least.


#6

Sparhawk

Sparhawk

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.


#7

PatrThom

PatrThom

TIL the difference between "class" and "stage."

--Patrick


#8

bhamv3

bhamv3

Good luck to you and your wife, man. Best of wishes from here in Taiwan.


#9

Squidleybits

Squidleybits

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 :)


#10

DarkAudit

DarkAudit

Squidleybits said:
As much as I hope that she doesn't lose her hair, the purple wig does have potential :)
Click to expand...
Yes, it does. :D


#11

Sparhawk

Sparhawk

We are a week and a day away from our visit to MD Anderson.


#12

Sparhawk

Sparhawk

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.


#13

Sparhawk

Sparhawk

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.


#14

Dave

Dave

Good luck to the both of you.


#15

Gared

Gared

You'll be in my thoughts. Best of luck to both of you.


#16

Squidleybits

Squidleybits

Good luck! I hope things go well for you!


#17

strawman

strawman

We will be praying for you all.


#18

Simfers

Simfers

Good vibes being sent.


#19

Sparhawk

Sparhawk

Gotta love free WiFi. We're checked in to MD Anderson and waiting on the first appointment.


#20

Sparhawk

Sparhawk

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.


#21

Simfers

Simfers

Sparhawk said:
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.
Click to expand...
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...


#22

Sparhawk

Sparhawk

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.


#23

Dave

Dave

If you need anything you let us know. Fuck, man. Give her hugs for us.


#24

GasBandit

GasBandit

Pulling for ya. So hard.


#25

Bubble181

Bubble181

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.


#26

MindDetective

MindDetective

Sparhawk said:
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.
Click to expand...
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?


#27

GasBandit

GasBandit

MindDetective said:
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?
Click to expand...
http://www.breastcancer.org/research-news/lumpectomy-after-neoadjuvant-chemo


#28

Sparhawk

Sparhawk

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.


#29

Sparhawk

Sparhawk

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.


#30

Sparhawk

Sparhawk

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.


#31

Dave

Dave

Is there ANYTHING you need?


#32

Sparhawk

Sparhawk

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.


#33

Sparhawk

Sparhawk

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.


#34

Sparhawk

Sparhawk

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.


#35

Squidleybits

Squidleybits

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.


#36

Sparhawk

Sparhawk

Squidleybits said:
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.
Click to expand...
We know, doesn't help that one of the chemo drugs will actually ruin arm veins, plus she has mostly collapsed veins in her arms. Just the procedure for installing the port is requiring her to be completely under, not just a local as was first told to us.


#37

Sparhawk

Sparhawk

Okay, jump forward through an unexplained (yet really cool) means to today. Last treatment for my wife with all 3 of the current drugs, two treatments left in this cycle. Next week, 2 drugs, last one with the experimental drug. The following week, May 17, will be a single drug, and the last treatment of this cycle. Everything is going well with the infusions, no issues this week with the port, but they are setting up an appointment with a dermatologist in The Woodlands to try to get her some help with her very dry and currently rashy skin.

May 23 will be the first of her second cycle of chemo treatments, 2 drugs, administered 4 times total, 3 weeks between each treatment, which means we will be finished with chemo before the end of July. May 23, June 13, July 4 and July 25 are the dates.

We heard someone ring the bell today, for being finished with cancer treatment and free of all cancer. We didn't see them, but just hearing the cheers and the bell was very emotional, even now it's still very moving and it was several hours ago that we heard it.


#38

Sparhawk

Sparhawk

So, that dermatologist isn't going to work, the only slot they have open is during the time of her final chemo for this cycle. So that's a but, next open slot they have is in July, a week before her FINAL chemo. Dr's team is now looking for other options, the rash is driving her crazy at times.


#39

WasabiPoptart

WasabiPoptart

If it's super itchy maybe she can talk with her doctor/team about taking something like Benadryl. It's not going to heal it, but she could get some relief from the discomfort.


#40

Sparhawk

Sparhawk

WasabiPoptart said:
If it's super itchy maybe she can talk with her doctor/team about taking something like Benadryl. It's not going to heal it, but she could get some relief from the discomfort.
Click to expand...
She's already on some stuff much stronger, this is to try to find some relief from side effects of drugs to fight side effects. Basically, from the way it looks now, she'll be on the way to healing from all of this before they find an appointment to get her in. It's annoying to her, but currently manageable, the drug causing the problem has only two treatments left.

Now the next cycle is going to be interesting to find out what reactions she has during it.


#41

Sparhawk

Sparhawk

Treatment #12 done. This was the last treatment with the experimental drug, next Thursday is the last treatment, a single drug, of this cycle. She's positive, but a little apprehensive at the same time, happy that this cycle is ending, worried about the possible reactions that can come with the new treatment cycle. She really doesn't like change, especially when the change involves unknowns. She has known what to expect for the past few weeks, but we won't know until that week after the first of the new cycle how the new drugs will really affect her. I'm trying to stay positive for her, fight against her inclination to expect the worst of it, but I can only do so much along those lines, and only so much to alleviate her darker expectations and worst case scenarios that she plays in her own head.


#42

Squidleybits

Squidleybits

Are there any non-human proteins in any of the treatments that she's on? I'm sure that this may sound like an odd question, but if she's having itching and a rash that isn't being relieved by very strong histamine blockers, it's something to be aware of. Hopefully, it clears up soon :)


#43

Sparhawk

Sparhawk

The itching is from dry skin, the rash a side effect of the chemo drug she finishes next week. She's really upped her water intake, and it does seem to be helping some. We know most of this will clear up starting in about a week to two weeks.

The worst side effect of the experimental, a biologic, was a huge amount of acne like sores. But, it is a side effect that actually shows how well it is working, the worse the breakout, the more effective. She had the breakout from the waist up. The research nurse almost did a dance after the 6th treatment because it was so bad.

The worst of the dry skin is from the drug that ended last week, so we feel good that it is partly getting better because we are getting further away from that last treatment.

The research team is still looking for options to get her into a dermatologist as soon as they can.


#44

Hailey Knight

Hailey Knight

Sparhawk said:
the chemo drug she finishes next week.
Click to expand...
That is huge though. I know it comes with so many other issues, but that finish line is such a big deal and not everyone sticks it out through there. She should be proud of herself.


#45

Sparhawk

Sparhawk

Zero Esc said:
That is huge though. I know it comes with so many other issues, but that finish line is such a big deal and not everyone sticks it out through there. She should be proud of herself.
Click to expand...
It's more of a checkpoint, since there are 4 more chemo treatments over the next 9 weeks. The end of July is the Finish Line and should be a bell ringing day.


#46

Sparhawk

Sparhawk

First treatment series is DONE! We have finished 13 weeks of weekly chemo.

Next Tuesday we have a 7:30am appointment for a full breast exam (ultrasound, biopsy, and mammogram) then a later appointment for a follow-up with her breast surgeon. Wednesday is an afternoon appointment with her Oncologist, and hopefully the first of the final 4 chemo infusions, there will be a 3 week break between each treatment, and they will be on Wednesday instead of Thursday.


#47

Sparhawk

Sparhawk



Ultrasound this morning showed no discernible tumor in the left breast (was originally the size of a small lime), only one lymph node of any size remaining. Tomorrow, May 23rd, will start the final cycle of her chemo treatment, 4 total treatments, over 12 weeks, final infusion will be around July 25, that will hopefully be confirmed tomorrow afternoon. Surgery will be sometime around August 22nd or after.

This was tremendous news and confirmation for the success of the treatments.

My wife is nervous about the new treatments, basically because we'll have to learn how these affect her.


#48

Sparhawk

Sparhawk

Week 1, Cycle 2 is done. This was the first of four treatments to finish off her chemo. The treatment package is referred to as AC. It includes a side effect that is called a couple of things... Red Dragon, Red Scare and I'm sure several other iterations of "Red ...". Literally, of of the treatment drugs is Kool-Aid red in color, and as a side effect... you're gonna pee red for a couple of days. We get three weeks between each treatment this time, many people experience severe nausea with this regimen, so we'll see what happens over the next couple of days.

We only have three more chemo treatments after last night, the end of this tunnel is getting closer.


#49

papachronos

papachronos

Sparhawk said:
Week 1, Cycle 2 is done. This was the first of four treatments to finish off her chemo. The treatment package is referred to as AC. It includes a side effect that is called a couple of things... Red Dragon, Red Scare and I'm sure several other iterations of "Red ...". Literally, of of the treatment drugs is Kool-Aid red in color, and as a side effect... you're gonna pee red for a couple of days. We get three weeks between each treatment this time, many people experience severe nausea with this regimen, so we'll see what happens over the next couple of days.

We only have three more chemo treatments after last night, the end of this tunnel is getting closer.
Click to expand...
Red Devil - Doxorubicin/Adriamycin. That's a tough one - my best to your wife, and help her stay off her feet as much as possible (blisters are a common side effect). Don't be afraid to get a medical marijuana card (if you can - is that a thing in Texas?). Many of the patients I speak to - and I work in radiology and radiotherapy, so I've spoken to quite a few - say it's the best decision they've made to maintain quality of life during treatment.

Also, relevant xkcd:



#50

GasBandit

GasBandit

papachronos said:
Don't be afraid to get a medical marijuana card (if you can - is that a thing in Texas?).
Click to expand...
It is not. It is very, very not. Unfortunately.


#51

Sparhawk

Sparhawk

She's having a easier reaction to this than she did with the Taxil that was in the last mixture. She's very tired this evening, but actually fairly good overall. Now has a 3 day weekend to really rest.


#52

Cajungal

Cajungal

Hope she rests well and gets to feel very comforted and pampered. ^_^


#53

Sparhawk

Sparhawk

Cajungal said:
Hope she rests well and gets to feel very comforted and pampered. ^_^
Click to expand...
I've been cooking or taking care of getting dinner for most of the past 3 months. People have brought her some soups or other items occasionally, but mostly me. Past month or so has mostly been some type of carryout, she just can't stand the smell of cooking, once the food is done she's fine, but cooking it.... I had to completely air out the house a couple of nights. I really feel that we're doing good at this time.


#54

Sparhawk

Sparhawk

Been almost two weeks since the first AC treatment. It's been pretty rough overall, but improving right now and getting the proper medicine to treat her side effects. She had a huge eruption of mouth ulcers that also have spread down the throat, made it very, very difficult to eat. Picked up a medicine for her on Monday that has got that going in the right direction on healing now. The nausea lasted about a week, and I know she's lost some weight over the last two weeks because of not being able to eat. But it's all getting worked out now, and hopefully we will be ahead of everything for the treatment next week.

July 4th looks to be an interesting day, she actually has a chemo treatment scheduled, and a follow-up doctor's appointment for July 5. That follow-up may be the first appointment that I miss. We'll be checking on that appointment date next week while we're there for that treatment.


#55

Sparhawk

Sparhawk

20 days later...

Had a second dose of the AC treatment, everything has been 1000% better. Since they found the right combo of drugs to help with her side effects this week has been such a complete difference from the last treatment. She's been able to continue eating as normal, feeling much stronger, actually looking forward to this next week. We actually cooked at home for the first time in weeks, and the smell didn't bother her!

Next treatment has been moved to July 5th, and we're set on medications for that one too. Final chemo treatment will be either July 25 or 26, she really wants the 25th. July 31 is the next appointment with the surgeon.

Surprisingly she's actually happy about the super short hair right now, much cooler in the 100F heat that we've had, but hasn't worn one of her wigs in weeks now. It's just too hot for them.


#56

Sparhawk

Sparhawk

FINAL CHEMO DAY!!!!! Up early to drive to Houston for the final chemo treatment. She will get to ring the bell today, hoping to be able to facebook live the event.


#57

Dave

Dave

I think I follow you on Facebook. Send me a message so I can watch the Facebook live bell ringing!


#58

Dave

Dave

Want to put the video up?


#59

Sparhawk

Sparhawk

Just got home after stopping to eat at Chuy's on the way home. It was a great day, but I didn't sleep well last night, and I'm dog tired right now. If you want to post the video go ahead, I'm just not thinking clear enough to do it tonight, or at least right now.


#60

Dave

Dave



#61

Sparhawk

Sparhawk

Thanks @Dave ! I was asleep by 7 last night, and just got almost 11 straight hours of sleep.


#62

PatrThom

PatrThom

“This post is no longer available removed privacy settings blah blah”

—Patrick


#63

strawman

strawman

PatrThom said:
“This post is no longer available removed privacy settings blah blah”

—Patrick
Click to expand...
I saw the same thing on mobile, but on the computer it's visible. Her video is posted to "public" on facebook, though, so it shouldn't be happening at all, and loading this page up in incognito mode, it does show up on the computer even though I'm clearly not logged into facebook.

So I'm guessing there's something weird going on with facebook and safari on iOS mobile devices, alternately the forum embedding code has an issue and interacting with facebook incorrectly for mobile or iOS devices.

Here's the direct link to her video, click it and see if it loads and plays.


#64

PatrThom

PatrThom

stienman said:
I'm guessing there's something weird going on with facebook and safari on iOS mobile devices, alternately the forum embedding code has an issue and interacting with facebook incorrectly for mobile or iOS devices.
Click to expand...
There’s also the fact that, for whatever reason, all my Internet at work today is being routed through an IP in France. Yes, that France. So I’m laying odds that may be a factor, too.

Such a day I’m having.

—Patrick


#65

Sparhawk

Sparhawk

I'm actually much better now, I posted that video, and one on my feed, from the hospital doing a facebook live. I had both of our phones going to get it. Yeah, pretty much both of our facebook accounts are wide open, nothing there that needs to be hidden (except for my casual gaming posts that only I can see) from anyone, as we don't post anything that would have to be hidden from anyone.

The verse that she recited was Psalms 118:24 "This is the day which the Lord hath made; we will rejoice and be glad in it." It was the verse that her grandfather said everyday, and she was very close to him, and that we both try to live each day.


#66

Sparhawk

Sparhawk

We have two possible dates for surgery, August 27 or August 29. We'll find out for sure this coming Tuesday, August 7. Labs for the 27th would be on the 24th, labs for the 29th would be on the 28th. This is the next step, and will take anywhere between 3-8 weeks for recovery and then 4 weeks of radiation treatment twice daily.


#67

Sparhawk

Sparhawk

Okay, the date is set. August 29. Radical Mastectomy of the left breast including nipple, and lymph nodes from under the left arm. Pre-op stuff will be August 28, spend the night in hotel, surgery on the 29th and an overnight stay in the hospital. We will get to come home on August 30, assuming all goes as planned with the surgery. Probably 2-3 weeks of recovery with the drains in, and another 2-3 weeks before radiation therapy will start.

Everything looked good today, the oncology department released her from treatment, of course we'll be checking in on a regular basis because of tracking her progress. Basically from here on out I'm just losing pay for missing work, but we can handle that, I'm saving my last 5 days of paid time off to use for a week while she's in Houston for radiation therapy.

We've made it through the toughest part, the chemotherapy, and from here out it's just going to be healing from "injury" instead of something making her sick.


#68

Sparhawk

Sparhawk

Tomorrow is the Pre-Op day. I'm a little nervous, just because major surgery.


#69

Sparhawk

Sparhawk

Surgery was a success. Everything went as smoothly as possible. I now have a left-handed Amazon for a wife.

Surgery started at 9am yesterday (8-29) and was finished right at noon. Got back to see her in recovery around 1pm. They got her moved into a room by 2pm and just about everyone else left at that time. Were released from the hospital about 8am today, drove to get a bite of breakfast (not hospital food) and headed home, got here around 11:30am. I'm now thinking about a nap, because I've gotten around 10 hours of sleep in the past three nights.


#70

Sparhawk

Sparhawk

After dealing with her drains today, I've still got my iron stomach.

I've dealt with the smell (kinda fresh meat to me) and seeing strange little things floating in there. We have to empty her drains into a paper cup type measure and keep track of how much discharge that she had from each drain (2 drains total) and make sure its the color and that we're not getting a foul/stinky odor from the discharge. She'll be able to get the drains removed in about 2 weeks when we go back to the hospital.

This is basically what it looks like... only on the left.


#71

Celt Z

Celt Z

I'm sorry. That sucks so much for both of you.


#72

Sparhawk

Sparhawk

Celt Z said:
I'm sorry. That sucks so much for both of you.
Click to expand...
This is actually easier than the chemo! With it it was just week after week of strange side-effects and never just feeling right. She's actually feeling pretty good, not much pain from the surgery (she says the worst so far has been about a 3-4 on a 10 scale, under the arm where they removed the lymph nodes.

I did promise "For Better or For Worse" and there have been much worse over the last 6 months. She's even upbeat about the reconstructive surgery in the late winter/early spring as getting new boobs and a tummy tuck.


#73

Sparhawk

Sparhawk

So, I remembered to take a picture of part of one of the waiting rooms today. There are 4 floors of the Mays Clinic (part of MD Anderson that deals strictly with breast cancer) that have 2-3 waiting rooms like this. This picture is of about one-third of the whole room. (They called us back so early that I didn’t get a chance to get more pictures) I tried not to really get anyone else in this photo, the windows are looking south and you can see the Astrodome and NRG Stadium from the end of the building.



There is just about as much space to the left and right of this photo, and is basically repeated again to the left and right of this room.


#74

Sparhawk

Sparhawk

Post-Op appointment was today, 13 days since surgery. Everything was GREAT! The drains were removed today, so no more having to strip the fluid out of them and doing all the measurements. We will see the Oncologist tomorrow, hopefully it will be news that she gets to get her port removed. Next week we meet with Radiology and should get the schedule for her treatments with them, expecting 4 1/2 weeks of twice daily radiation with her staying in Houston during the week for those treatments. Still looks good for being in the MD Anderson housing for the duration of that, and hopefully a weekend during it to go down to Galveston to enjoy a day for her "Ocean Therapy."


#75

Sparhawk

Sparhawk

Couple of more pictures of the waiting rooms, just trying to give an idea of size and comfort they’ve gone for.



Not actually a picture of the waiting room, but out the window from the 5th floor. The elevated enclosed walkway is the Skybridge, connecting the Mays Clinic (breast cancer center) to the main building of MD Anderson. The Skybridge is half of a mile long, and is great for walking, if you can’t walk it, the have shuttles that run it’s length, they seat 9 plus the driver.



PT gave her some new exercises today, to work on stretching the scar tissue, and the oncologist was super pleased with the progress that’s she’s made in just two weeks. She’ll be able to have her port removed during the next month, won’t have any continuing drugs to take, nor expected to have any need to do any chemo again. Only setback, as far as what my wife wanted as a desired recovery schedule, is that she’ll have to wait until at least next fall for reconstruction surgery. With the plans that she’s wanting anyway, that will mean winter/spring of 2020, since she’s NOT going to delay going to Disney again.


#76

Sparhawk

Sparhawk

Alrighty then. Had consultation with Radiology today, they did the consultation, explained all the horrible side-effects that could happen, and pretty much brushed most of them off because much of those horrible things occurred when they weren't nearly so precise about radiation. Yes, there are risks, but they're smaller than they used to be. During the consultation they scheduled what is called a simulation, basically a time for a dry run of how the radiation treatment would go and to get the positioning of her body precise and marked for the actual treatments. They actually sent us home with sharpies to make sure the lines stay fresh for the next two weeks before treatment starts. During the simulation they also made a upper body back mold to make sure that she's always going to lie in the correct position during treatment.

Radiation will start October 8 at 10:30am, she'll basically be living in Houston until November 7. Treatments will be twice a day, weekdays, from October 8 through November 7, take about 45 minutes each, and have to have at least 6 hours between each treatment, the actual radiation part of the treatment will be around 10-15 minutes, the rest of the time is for changing, positioning and questions.

We're still waiting to hear for sure if we will get housing through MD Anderson, we won't know for sure until at least October 7, the day before the first treatment.

I will be with her for one week during the treatment time, her mother for possibly one week, and a possibility of a friend, her sister, my mother, or her mom again for the other two weeks.

The radiologist said that she will probably start seeing side-effects (sunburn like condition, tightening of the skin) after the first week of treatments (10 treatments) and may take up to 6 months to completely dissipate.


#77

Sparhawk

Sparhawk

Looks like we won't be getting the Hospitality Apartment to at least begin radiation treatment. I had already booked a backup room at an Extended Stay America hotel. Not glamorous by any means, but does get us a kitchen and full fridge so that we can cook for ourselves and not spend extra eating out all the time.

Still waiting on the bill to drop from her mastectomy, but this radiation will probably be more expensive in the overall billing since her deductible started over on October 1.


#78

Sparhawk

Sparhawk

My wife.



#79

Sparhawk

Sparhawk

WE JUST GOT THE HOSPITALITY APARTMENT!


#80

Sparhawk

Sparhawk

Here’s a couple of pictures of the apartments. They’re small, but super cheap and not bad for what we need it for. Went grocery shopping at Whole Foods and Trader Joe’s this afternoon. I could see this actually being a hard place for some people to stay because of the rather close quarters.



Our apartment is on the top floor, second blue door on the left.




#81

Sparhawk

Sparhawk

First day of radiation treatment did not involve any radiation. X-rays and ultrasounds, and still more drawing with sharpies for positioning marks on my wife.

Busy morning today, first actual radiation, removal of her chemotherapy port, follow-up with her breast surgeon, a break for lunch and rest and then the second rad treatment.

Yesterday, on a whim, we went to Galveston for the afternoon. Ate what turned out to be our only meal of the day, and enjoyed some of what my wife calls “ocean therapy.”





#82

Sparhawk

Sparhawk

Went back down to Houston for the weekend to spent it with my wife doing stuff that she wanted to do for her birthday. Went and ate at the original Carrabba’s in the Upper Kirby district Friday night. Got up Saturday morning and drove down to Galveston for the day. We rode a Galveston Bay dolphin tour boat.





Saw many, many dolphins and enjoyed spending an hour roaming around the bay. Went and found some lunch up on the seawall at The Gumbo Diner. It’s a building that’s been there for years, used to be a Waffle House, and put to so much better of a use now. Some of the best Gumbo I’ve ever had outside of someone’s home. Thought I had a picture of it, I don’t, but was a great dark roux chicken and sausage recipe.

Spent some time walking on the beach, riding across the ferry to Bolivar Peninsula, and watching the bikers riding in a two day fundraiser around Galveston bay. Went to the only store remaining out over the gulf from hurricane Ike, Murdoch’s.



Also, while waiting to get back across the ferry to Galveston we saw the two cruise ships head out on their cruises.



Overall just had a great day with my wife, who is now over a third of the way through the radiation treatment phase of this cancer journey. She will come home the next two weekends, and November 7 can’t get here soon enough.


#83

Sparhawk

Sparhawk

There are 8 more treatment days left, 16 total treatments and she will be deemed cancer free! She's home for the weekend (and next weekend) but today has been a little busy. Voted, ran errands, ate lunch, more errands, picked up a slow smoked pork butt from the high school baseball fundraiser (oh lord that smells so good) and now to finally wind down for the rest of the day. We're gonna fix some dinner, watch a movie and then flip between the Texas A&M vs Miss St and the LSU vs 'bama games.


#84

Sparhawk

Sparhawk

TREATMENT FOR CANCER IS DONE!!!

We are home, mostly have the car unloaded, and exhausted. Next trip to Houston will be in December for the first of the follow up visits (this is about 4 months after the last visit with the Oncologist), and it also happens to be our wedding anniversary.

There is a video on Facebook with her ringing the bell for the final time, Somebody else can load it here, or I'll get to it tomorrow. Bed now.


#85

Cheesy1

Cheesy1

YAY!


#86

Sparhawk

Sparhawk



#87

Celt Z

Celt Z

So damn happy for you both! Take that, cancer!


#88

Sparhawk

Sparhawk

Realized that we were close to a year out from the diagnosis, didn't realize that we had actually gone past it.

Wow, what a year.

Even though all of this past year, we're still here. Gotta let this settle in for a little while.


#89

Sparhawk

Sparhawk

One year since the first day at MD Anderson, we go back in one month for a checkup.

Everything is going as expected. She's almost gotten full range of motion back with her left arm, slow process stretching the skin around the scar from the mastectomy. She's found out about pain from scars during cold weather. We've started a exercise regimen by walking around our neighborhood, doing just the main streets is almost 1.5 miles. We've gotta get back in shape for Walt Disney World in November.


#90

Sparhawk

Sparhawk

Tomorrow is the second checkup since end of treatment. Nothing exciting, just a lymphodema study checkup, oncologist check in and nothing else.

May will have a followup bilateral mammogram. We don't know how this will work. There is only one boob to do a mammogram on. We're joking about it.


#91

PatrThom

PatrThom

Tell them you paid for two, so they'll just have to do the one twice.

--Patrick


#92

Sparhawk

Sparhawk

Just realized I didn't update in May, everything was fine.

Checkup today, great report, started the process to schedule reconstruction and lymph node replacement surgery for around the end of February. Lymphodema study showed a lessening of the size of her arm that had the lymph nodes removed (by almost 3%) so that study has been concluded as of today. That study was just a tracking study, and showed that her system appears to be doing well at keeping fluid from building in her arm.

Only "bad" news is that the doctors appointments will increase over the next few months. We have one appointment near the end of November, 2 now in December, 1 in January and hopefully (just because she's ready to get it done) a week or two stay at the end of February beginning of March.


#93

Dave

Dave

We like good news.


#94

Sparhawk

Sparhawk

Okay, today we met with the reconstructive surgeon. Everything is on course to rebuild my wife in (we hope at this point) late February or early March. It's all in the hands of the schedulers at MD Anderson to get the pre-authorization from insurance and get all the doctors and teams involved on the same page for the date and place.

Surgeon told us that her surgery will be between 6 and 8 hours in length, they will have three separate areas with incisions, reconstruction of the left breast, lift/tuck/reduction of the right breast, and a tummy tuck/lymph node removal from the abdomen. They will use the skin and fat from the abdomen to build a new breast, and 3-4 lymph nodes to be replaced under the arm to help prevent lymphodema in her left arm. He told us that the surgery she is having has a 98.6 success rate in a combined 10 year study (combined in that it is across all age groups, not just one), and that we will have a hospital stay between 4-7 days, but get to head directly home after that and not have to live in Houston for an additional week after being released from the hospital.

Also, we spent the one year anniversary of being cancer free in Disney World.
3princesses.jpg



One thing that is really special about this, normally you cannot get a photo with more than one Princess at a time. My wife has a habit of striking up conversations while waiting in line, she did so while waiting to meet Rapunzel and Tiana, the cast member had a name badge that said she was from the University of Alabama, my wife is a graduate of LSU, and it was the Saturday of the big game between the two schools. She also leaned that the cast member was from The Woodlands, Texas that is only about 1.5 hours from our home, and a high school that used to be in our football district so we talked about home too. Anyway, the cast member waited around while we met with the Princesses and got out picture taken with them, and we were heading toward the exit she stepped back over and asked if we had met Cinderella and Elena, my wife responded that we hadn't but might if the wait wasn't too long since it was our last day in Disney and we had to get to the airport to fly out, the cast member responded that the line was not a problem and that she would take care of getting us in. So we were escorted over to the other side of the Fairy Tale hall to the room that had Cindy and Elena in it, we were that last ones for that group that went in (actually walked in after the last of the group before had met Cindy) and we got pictures with the two of the separately and were picking up our stuff to leave and she told us to wait that they were doing something special. Cindy came over to Elena's side of the room and they took several photos together with my wife, I just stood back and watched, this was all for her.


#95

Sparhawk

Sparhawk

Little update while we are in a waiting period for the next step. We've seen the reconstructive surgeon, good visit, and reconstruction has been approved and scheduled!

March 23, DEP Flap surgery (using her own tissue to rebuild the left breast) and lymph node replacement under the left arm. She was never a candidate for implants as she does have Lupus, but this surgery is around 90-95% successful.

Also, today is the 2 year anniversary of the confirmed diagnosis at MD Anderson. Been one hell of a ride, and we've had some really good stuff too.


#96

Dave

Dave

Hoping this isn't TOO insensitive, but do they HAVE to call it flap surgery for this kind of procedure?


#97

PatrThom

PatrThom

Dave said:
Hoping this isn't TOO insensitive, but do they HAVE to call it flap surgery for this kind of procedure?
Click to expand...
Yes, considering the actual procedure* (as opposed to radial).

—Patrick
*no I’m not gonna go googling a link from work.


#98

Sparhawk

Sparhawk

Dave said:
Hoping this isn't TOO insensitive, but do they HAVE to call it flap surgery for this kind of procedure?
Click to expand...
Gonna take more than that to be insensitive, we've been pretty open about all of it. Plus, I didn't name it. And, was not awake enough to notice I didn't type it correctly, it's Diep, not Dep.

Some nudity, but medically so....

Breast Reconstruction Surgery: Types, Cost, and More

Learn more about breast reconstruction, including types of reconstruction, if it’s right for you, when you can have it, and how to find a plastic surgeon.
www.breastcancer.org www.breastcancer.org


#99

Sparhawk

Sparhawk

As of today, reconstructive surgery is canceled. Unknown when we’ll be able to reschedule.


#100

Sparhawk

Sparhawk

Surgery has been rescheduled, new date, 13 days from now, May 22, 2020. At this time, it will just be her entering the hospital, no visitors/helpers for people that do not need actual assistance to get around. Pre-Op and Covid screening will be May 21. The rules on visitors may change in the next two weeks, just playing by ear and making plans as if I won't be able to be in there for her.


#101

Sparhawk

Sparhawk

About to leave for Houston for the second trip this week. Pre-op, anesthesia, and covid. Will find out how early we have to leave home tomorrow to have her down to Houston for surgery.

Monday's appointments went very well, she's been moved to twice a year on oncology checkups. So, only two "have to" trips to Houston a year for a few years (2-3) for cancer follow up. Will still be making several this next couple of months for surgery follow up after tomorrow.

Cancer can be beat. Get your ass to a hospital that knows what they are doing with it, not just a little podunk backwater place that thinks they know it. There are good hospitals to deal with it everywhere, and they aren't afraid to say that they need to get you somewhere else for treatment that they can't provide.


#102

Sparhawk

Sparhawk

Surgery has been underway for about 6 hours now. They’ve removed the donation tissue from her abdomen, prepped the blood vessels for reconnection at the breast site, and currently doing microscopic work to connect lymph nodes back and connecting blood vessels.


#103

Sparhawk

Sparhawk

SHE'S IN RECOVERY!!!!

Almost 9 hours of surgery, still waiting on the call from the surgeon, but OR nurse said all went well and she was in recovery.


#104

Simfers

Simfers

That's amazing, dude! So happy for you both!


#105

Sparhawk

Sparhawk

I've texted with her, she's feeling okay, knows that she's gonna have to deal with tons of pain (she prefers to keep the pain meds as light as possible) but feels good about what she's been through.

The surgeon was positive about the surgery, feels it all went well, said they may need to (or if Renea wants) to do a second surgery later to balance everything if anything is off after she heals.

Autocorrect caught her in one of her texts, it's funny, the corrected version of the text was...

"I've got two bobs!"


#106

Emrys

Emrys

Two BOBs? Most women make do with one. You go, Sparhawk's wife!


#107

Sparhawk

Sparhawk

Renea got to come home yesterday. She's tired, but feeling good, everything is going great. Lots of incisions that have been glued/stitched up.

She started with 5 wound drains, they were able to remove one before leaving the hospital yesterday. Literally has an incision that runs from hip to hip across the front where they removed skin and fat to rebuild her breast, incisions that run completely around (well duh, it wasn't there before) her new left breast, and incisions around the bottom/up the underside/around the nipple of the right breast where they did a reduction and lift. Heaviest pain killer than she's on is Tramodal, they offered heavier stuff but she refused. She's resting and recuperating here at home now, and looks forward to being able to sleep a night in our bed again in the near future, but that's still at least a couple of weeks away.


#108

Sparhawk

Sparhawk

Everything has healed beautifully. Several months to go on getting everything stretched out correctly. She may go back to work this week, not sure her mom will like that, because she's been enjoying getting to spend time with her each day.

Next up will be what they call revision surgery, they go in and take care of the little things that need adjustment. This usually involves some liposuction, since they have to use her own tissue to do anything. This will possibly be more uncomfortable than the reconstruction since lipo bruises such a large area. Watch a video of it and you'll understand.


#109

Sparhawk

Sparhawk

Well, she's gone back to work, which is great, but it's been a wild ride with illness of coworkers and discovering what they DIDN'T do while she was out.

Revision surgery will be October 9, little lipo, little snipping of a couple of areas that have retained too much mass, but all good news.


#110

Sparhawk

Sparhawk

Today is the day for her (hopefully) final surgery. She’s at MD Anderson right now, I’m in a hotel room a couple of blocks away. It’s 5:42am and we’re getting rain from Hurricane Delta. She should be in surgery around 7am and if all goes well, we’ll be heading home later today.
Surgery will be “touch up” type work, removing a little here and there, lifting a little more there, and some liposuction to clean up odd ways that her body basically redeposited fat around the big surgery area back earlier this year.


#111

Sparhawk

Sparhawk

Three years ago today my wife had her final chemo treatment. She’s still cancer free today!


#112

Sparhawk

Sparhawk

Ext week, the 18th, Renea has her three year cancer free checkup at MD Anderson, and for the first time in two years I’ll be able to enter the hospital with her. She’s had two major surgeries (boob reconstruction) and several doctors appointments in that time. We both have to pass Covid protocol to get in, but MDA didn’t start allowing caregivers to accompany patients until this past June and the last checkup was in May.

She’s going to have at least one more surgery to correct a “balance” issue and adjust some fatty tissue that didn’t settle correctly and gives her a lumpy area where she’s very self conscious about it. We’ll have to see when the surgeon will be able to schedule this.


#113

Sparhawk

Sparhawk

Results from 3 year checkup are all clear. Everything has healed great, two spots they confirmed were necrotic fat tissue and nothing to be concerned about, and a tentative scheduling of the final adjustment surgery for the spring.

Three years cancer free and all is well


#114

Sparhawk

Sparhawk

Today we are back at MD Anderson, just the 6 month checkup. But today is also the 4 year anniversary of being done with the 1st round of chemo. The hospital is looking a little more normal than the past few visits, no longer doing temperature checks, just a verbal checklist, still having everyone wear masks in the buildings (makes sense here) but you can choose how close you are to other people. Expecting the same news that we’ve had the past visits, no cancer and one visit closer to these being yearly visits.


#115

Sparhawk

Sparhawk

That was the news from the visit. One visit in six months, if everything is the same she’s into the survivor phase, less than 2% chance of recurrence of inflammatory breast cancer, and our visits will become yearly instead of every six months.


#116

Sparhawk

Sparhawk

My wife is currently in surgery for her final time with all this stuff. Doing what is called a revision surgery to get everything “touched up.” It consists of a little liposuction to reduce one area, a lift on the natural breast to even them up, and all new incisions are going back through existing scars and any excess scar tissue removed. Then on to healing from this and starting to try to design a scar covering tattoo around her rebuilt boob. Her idea is to do a Tinkerbell pixie dust trail and including her life verse (Psalm 118:24) and probably a Mickey of some kind. All is going well.


#117

Sparhawk

Sparhawk

Surgery is done, she’s in recovery and we should be heading home soon.


#118

Sparhawk

Sparhawk

02BCF70D-E870-4F53-8F16-CCBD352F0747.jpeg

This is currently my wife’s hair.
I knew about it before she did it. Since it’s breast cancer awareness month she decided to color her hair as bright a pink as possible. She’s using it as a way to talk to other women about making sure they get their mammograms done instead of just putting it off, like she did most times before December 2017. That mammogram saves her life, and her campaign has been successful because at least three women have gotten their testing done and one of them resulted in the woman getting further testing due to an area of concern.
She’s not going back to purple until November, and we’re attending a Pentecostal wedding next Saturday. It’s family, and they already know, but we’re expecting some funny looks from non-family since Pentecostals don’t believe in coloring hair or women purposefully cutting it short.


#119

PatrThom

PatrThom

Sparhawk said:
she decided to color her hair as bright a pink as possible.
Click to expand...
That looks like success.

--Patrick


#120

evilmike

evilmike

Stewart Semple would be proud.


#121

Sparhawk

Sparhawk

PatrThom said:
That looks like success.

--Patrick
Click to expand...
Wildly so. It even shocked her a little the night she did it.


#122

Squidleybits

Squidleybits

I love her hair!


#123

Sparhawk

Sparhawk

Today is the 5 year anniversary of Renea’s final radiation treatment for her breast cancer. She has a checkup the Monday before Thanksgiving. According to the doctors at this point, in this whole journey, if she has some type of breast cancer show up, it will be a completely different type of cancer. They say if you haven’t had a recurrence by this time the odds are infinitesimally small that it will come back.


#124

Sparhawk

Sparhawk

Follow up on last week’s doctor visit, she has officially entered the survivorship program, one visit a year, to a whole new part of the breast cancer clinic (new to us at least) and a new set of doctors/PAs for her mammogram and tracking information. Her oncologist told her, that statistically, she has less than a 2% chance to ever develop the same type of cancer ever again.


#125

Simfers

Simfers

Please give her a big ol' hug from me, dude. That's the best news.


#126

Sparhawk

Sparhawk

Simfers said:
Please give her a big ol' hug from me, dude. That's the best news.
Click to expand...
Hug delivered. She saw your avatar and said “Ah, the Transmetropolitan guy.”


#127

drawn_inward

drawn_inward

Happy to hear this. Wish you both well!!


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