Sparhawk's wife's journey

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


 
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.”



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

--Patrick
 
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.
 
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.
 
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.
 

Dave

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

—Patrick
*no I’m not gonna go googling a link from work.
 
Hoping this isn't TOO insensitive, but do they HAVE to call it flap surgery for this kind of procedure?
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....

 
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.
 
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.
 
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.
 
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.
 
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!"
 
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