Kicking Cancer's Ass

Neutropenia

2016-02-19T12:50:00.002-08:00

Dr. Yacoub is now gone. The short version is she is neutropenic and she needs to hang tight in the hospital until the “bug” is gone and she is no longer neutropenic. There is some good news to report. She has finally been assigned an actual room (4204) and he is giving her a medication (neutrophil?) that should help speed up the process. The order for the new room has been placed and we are waiting to get her transported as I type this.

Cary's ER door

The bad news is that she will be staying here for the next few days at minimum. Although she would obviously much rather be at home, staying here under medical supervision is a plus, not to mention they continue to pump fluids, antibiotics, pain meds, etc and they definitely have her feeling pretty good!

I am hoping we are now in somewhat of a holding pattern and just have to hang out and wait for this to take it's course.

surprise visit to the ER!

2016-02-19T09:55:00.002-08:00

It is hard to believe it has been over 2 months since I have updated the blog! For those of you that are only following the blog and looking for more updates, please join our slack channel. If you need to me to send you an invitation, send me an email to wrmiller3@gmail.com or send it directly from the contact form to the right.

As I mentioned in previous slack updates this week, Cary hasn't been feeling great since her last round of chemo and went in to see Dr. Yacoub (and his great team!) on Wednesday. After getting fluids and antibiotics, we were hoping this would be the trick to turn things around.
Unfortunately, her aches & pains, nausea, stomach issues and fever didn't get better. Per Dr. Yacoub's instructions, Cary called the on-call doctor around 8:45p and shortly after we went to the ER (KUMC) as a precautionary measure. With her white blood cell counts so low, his concern was that if she has an infection, things go head south quickly.

When we got to the ER, it was completely packed and based on brief observation could tell that several people had been waiting hours in the waiting room just to see a doc. Within 10 minutes of our arrival, she was taken in to see a triage nurse. Her blood pressure was extremely low and coupled with the fact that she had neutropenic fever symptoms, she was bumped to the front of the line and moved into a room in the ER promptly. The traffic in this place is a story for another time!

After being evaluated by the ER doctor, several more tests were run and it became clear that this wasn't going to be a quick visit! Her white blood cell counts have dropped to under 1 and they are very concerned she has a virus that needs to be treated with antibiotics. They did a spinal tap around 3a and we are still waiting for the results.

We are hoping to get moved to a room upstairs sometime in the next few hours and will most likely be here for a couple of days. In the meantime, we are waiting on Dr. Yacoub to pay a visit and now I have to run across the street to get her some food!!!

I will post more details later, but wanted to give you a heads up! She isn't in any pain and other than all of the sitting around/waiting, things aren't that bad with all things considered!!!

Round 2 Update

2015-11-23T16:01:00.000-08:00

Sorry I am just now getting an update out. We had a busy weekend of soccer and hockey games while Cary had an up and down weekend. Friday and Saturday, it looked like the change in anti-nausea medicine was doing the trick. I was pretty surprised she was doing so well after her recent treatment. She took it easy Friday night and woke up feeling well enough to go out for breakfast, get her hair cut and make it to Chase and Cooper's soccer game. Sometime late Saturday afternoon, things took a turn and she has been fighting a pretty tough case of nausea ever since.

She slept most of the day yesterday and has been following a similar regimen today. Hopefully tomorrow she will start bouncing back and be in good spirits for Thanksgiving. I will post again when I think she is out of the funk and back to "normal".

tm

Chemo - Round 2

2015-11-19T10:07:00.000-08:00

It's hard to believe that 26 days has already passed! As expected, after her first round, she experienced a good amount of nausea and was extremely tired for about 4 to 5 days after her treatment.

This round, they are giving her a different kind of anti-nausea drug, so hopefully her post-treatment symptoms won't be nearly as bad as the first time around.

As a reminder, each round consists of 2 days "on" with 26 days "off" for a total of 6 rounds. After the 6 rounds of chemo, she will also get the Rituxan every 2 months for another 2 years. During the chemo period, on day 1, she starts with getting her blood drawn, followed by an appointment with Dr. Yacoub and then gets her dose of Rituxan (which takes about 1.5 hours) and finally the chemo (Bendamustine) treatment which takes about 30 minutes.

She started this process at 8:45a and should be done sometime around 2p.

Tomorrow, she doesn't have to get her blood drawn or meet with Dr. Yacoub. Compared to day 1, day 2 is relatively short. After going through all of the pre-treatment steps (check in, getting a room or cube, taking vitals, and getting the cocktail made up), the actual treatment should only take about 30 minutes. All in, we are expecting a couple of hours before we get to head home.

To be added to slack, send me your contact information -->>>

I will post updates on Slack periodically over the next several days. If you haven't signed up to Slack, or need an invitation to get signed in, send me your email address in the contact form (in the right hand column of this blog) and I will add you to the "team" within a couple of hours at most.

tm

Royals - 2015 World Series Champions!!!

2015-11-03T10:19:00.000-08:00

I realize this blog is about Cary and her journey to kick cancer's ass, but today is an epic day for Kansas City!

It has been a crazy week here in KC with the World Series and the extra innings certainly didn't do her any favors! I think she would say it was all worth it though! The side effects of chemo have passed and other than fatigue, it has been a pretty good week for her! Throw in all of the excitement with Halloween and the Royals amazing run and it has been a great week for her!

As I write this, she is en route to the Royals parade with the boys and Stuckey's (sans Brian). Their ride was over an hour late and the drive there looks horrid, but again, she is in great spirits!!

I am wrapping up a few things for work and then jumping on my bike to make my way down there. I will try to get some photos and add them later.

Until then, GO ROYALS!!!!

Weekly update

2015-10-30T09:04:00.004-07:00

Compared to the past several weeks, now that Cary has started chemo and we are past all of the surgeries, tests, appointments, visits to Omaha & Mayo, etc., things seem to be slowing down a bit!

As you know, Cary had her first round of chemo last Thursday/Friday. I was pleasantly surprised to find out that the actual time involved in getting the actual treatment wasn't as time consuming as expected. I am not sure if it was a figment of my imagination or we were told differently from the beginning, but I thought day 1 of treament would take the better part of the day and day 2 would take up about half of the day. Although it isn't like dropping in for a quick cup of coffee, the actual time involved shouldn't be nearly as bad as expected!

Moving forward, day 1 shouldn't take more than a few hours (walking in the door to heading home) and day 2 shouldn't take more than a couple of hours. The actual time that she is hooked up to the IV is only about 2 hours on Day 1 and 30 minutes on Day 2 (since she doesn't get Rituxan on Day). There is additional time required for her to get blood drawn on Day 1, meet with Dr. Yacoub, get into a room or cube, go through all of the pre-drip procedures, wait for the cocktail to be made, etc.

Cary was nauseous and fatigued Friday through Tuesday. Wednesday, she said she felt like the chemo symptoms were gone or very minimal, but felt like she was getting the flu! Fortunately that passed and yesterday she said she felt great!! She did get tired about mid afternoon and was pretty tuckered by 6p. This seems to be pretty standard.

This morning, she seems in great spirits and feeling great! Big weekend of Royals baseball that will probably mean some late nights. Hopefully it doesn't kick her ass too much..

Brief update for the "slackless"

2015-10-26T12:02:00.000-07:00

Sorry for the delay in getting a detailed update on the blog. It has been a busy week with a trip to Mayo, 2 days (partial at KU Cancer Center), a Royals playoff run and multiple house projects! I will get something detailed up tonight. In the meantime, for those of you not following the updates on Slack:

Cary finally started chemo last Thursday (10/22). She will be doing 6 rounds of chemo (2 days on, 26 days off) and then 2 years of Rituxan (1 day every two months).

Although her cocktail of (Bendamustine and Rituxan) is considered "easier" than the R Chop that was also considered, she has been fighting nausea all weekend and is fatigued. Her spirits are still positive and I am confident we are moving in the right direction!! Hopefully she will start feeling the positive affects (i.e. - killing the cancer and resulting back/neck pains) of the chemo and start feeling better in the next day or so.

SLACK and BLOG?

For those of you reading this blog that are not following Slack, keep in mind that I will be making periodic updates to this blog with a more detailed summary of Cary's journey. I am using Slack to provide instant updates at certain milestones of this journey (i.e. -after doctor appointments, during/after treatments, etc). For the most part, they will be brief and keep everyone in the loop at the particular time.

I will be updating the blog periodically with more details on Cary's progress.

What is the difference?

Slack Icon for iPhone

I am sure there is a work around, but from what I have found, if you sign up to "follow by email" on the blog, you can't receive email notifications instantly when I make a new post to the blog. You will receive an email notification daily (only when I post something new), but only one time per day. There have been (and will be) times where people are anxiously waiting on an update and this form of communication will not work.

When I make a new post on Slack, you will be instantly notified. Slack is basically a texting app that is tied to your email instead of cell phone number. IF you download the app for your iphone, droid or window's phone and set the notifications properly, you will see a notification on your app (just like email, text, etc) when you have any unread messages. I will post directions on how to properly set up your notifications on the "about slack" channel this night.

If you are not following slack and would like to, please send me your contact information using the contact form on this blog and I will send you an invitation to join our "team".

If you have any questions, you can also use the "contact form" to send me a note. I will get back to you as soon as possible.

Thanks,

tm

It's GO TIME!!!

2015-10-15T06:48:00.002-07:00

I just dropped Cooper off at school and Cary at the KU Cancer Center. She is doing blood work now and then we meet with Dr. Yacoub at 9:15. She is scheduled to start Rituxan at 11a. Kristin posted some details on slack. For those just following the blog, I thought you would like to see this:

BIG THANKS to Margot Stuckey and her 2nd grade class at St. Ann's. Margot and Renee surprised Cary this morning with this:

Pretty cool way to start the day and get this program started! I can assure you that all of the calls, texts, emails and many gifts mean the world to Cary (and me!) and will certainly help her get through this!

Off to the cancer center. I will send an update sometime this afternoon... tm

3rd opinion - check

2015-10-13T15:43:00.001-07:00

It has been quite the day for us! While I spent the better part of the day at the office getting caught up on work, Cary was very busy making calls to Dr. Yacoub, Dr. Bierman and getting on the schedule to see another specialist, Dr. Habermann, at Mayo Clinic next Tuesday.

Regardless of what kind of cancer we are dealing with, and the best chemo to kick it's ass, she will also be taking an antibody called Rituxan every 2 months for the next 2 years.

While we wait to visit Mayo, it has been decided that she can get started with the Rituxan and will now be spending all day Thursday at the KU Cancer Center getting her first treatment!

I have heard varied reports on side effects and hope this first round isn't too bad on her! I will be spending the day with her and will keep you all posted.

Happy Birthday Cary!

2015-10-13T08:27:00.002-07:00

Happy Birthday Cary!!!

After a long weekend of recovering from the biopsy (she is doing great!) and patiently waiting to hear from Dr. Yacoub about the results (which were expected this morning), Cary received a call last night. The good news (I think) is the results came back conclusive to the original biopsy. The bad news is that since the opinion of KU and Nebraska is very different, Dr. Yacoub (and his team) are recommending that we get a third opinion before making a decision on the proper course of action!

For some reason, the results of the second biopsy weren't sent up to Nebraska for review, so they are still basing their opinion on "old data". After letting the news from Dr. Yacoub sink in last night, it became clear to us that we need to push to have the samples sent up to them for review, while also looking at other options for a third opinion.

This obviously delays things more and wasn't exactly the news we were hoping for. However, thinking about it long term, I am confident this is just another bump in the road and will be worth it when a final decision is made and we get to work.

Cary made a call to Dr. Yacoub's office first thing this morning and hopefully these balls are now in motion. We are also in the process of finding the right group to review her biopsies and provide a third opinion. Fortunately, we have some very smart and helpful people on our team and should have some clarity on our options later today. So here we are again, just waiting and wondering where this journey will take us!

In the meantime, Cary seems to be in pretty good spirits and physically appears to be in much better shape than yesterday! I will keep everyone posted as I have more information.

Biopsy is scheduled!

2015-10-06T14:15:00.001-07:00

Cary, Katie, Miriam & Audrey
Sporting pregame

I just got a call from a very excited Cary! We have been patiently waiting to hear from the hospital to find out when she will be getting another biopsy. The wait had put us in a bit of a tail spin, but all is good now. Our friend (and neighbor) just happened to work in the surgery department at KU and was able to help expedite the process for us!!! Thanks @kstrahan77!!!

After speaking with the hospital by phone, they asked if she could come in this afternoon for a pre-surgery consultation. She met with the surgeon and Dr. Yacoub within the hour.

She is scheduled for the first surgery of the day on Thursday morning at 7a. Cary discussed the options they had (stomach, groin, arm pit) and it was decided the best option will be in the arm pit. It will be be less invasive and with less risk than the stomach or groin area. This is the same area she has already had a core needle biopsy, but this time she will be having an open surgical biopsy and removing a few lymph nodes. This should increase our chances of getting a good sample for the pathologist to examine.

Pathology will have the lymph nodes shortly after surgery with a rush request. Dr. Yacoub is expecting to have results sometime Thursday afternoon, giving him plenty of time to study them and discuss the results with the pathologist and Dr. Bierman. This should also give Dr. Bierman ample time to review them and hopefully discuss her case at his weekly group pow wow on Monday morning.

Cary is scheduled to see Dr. Yacoub on Tuesday. If all goes well (no complications with surgery, successful biopsy,no post-surgery infections) and our powerhouse of doctors are all in agreement of the type of cancer and protocol moving forward, she will be ready to start chemo (whatever kind it may be) next Thursday morning!

I have never heard someone so excited to go under the knife, but I will take these little wins all day long!!

Tripp

Slight step back

2015-10-05T21:30:00.000-07:00

Last Thursday, Cary, Kristin (Moshier) and I made a trip to Nebraska Medical Center to get a second opinion. We made the 3 hour drive up there in relatively good spirits with the expectation that we were going to get the "seal of approval" from another set of eyes and get started with "the plan".

Dr. Bierman

For the most part, our second set of eyes (Dr. Bierman) agreed with Dr. Yacoub's opinion, but with limited information (I will explain in a later post), did question if the cancer in her stomach region was the same type as the cancer in her armpit area that had previously been biopsied. If the type of cancer was consistent throughout her body, Dr. Yacoub's plan was spot on. However, IF the type in the stomach area was different (and he couldn't guarantee it), treatment options could change.

At this point, we were obviously a bit disappointed to hear this, but then again, this is why we went to get a second opinion right? So what next?

Dr. Bierman was able to get Cary's case on his group's weekly review meeting this morning at 8a. We then had to sit around for 3 days and speculate about what they would recommend. After Cary had 3 different discussions with Dr. Yacoub on Friday, I felt like they would discuss her case and ultimately agree with Dr. Yacoub and we would be back on track.

This morning, we showed up to the KU Cancer Center prepared to get started with chemo, but also prepared for a curve ball should the Nebraska group recommend additional biopsies to confirm what kind of cancer we are looking at.

After a brief conversation with Dr. Bierman around 9:15, followed by a lengthy conversation with Dr. Yacoub shortly after, we all agreed that the smart decision would be to get another biopsy before moving forward with any kind of chemo.

We are now waiting to get on the schedule of a surgeon to perform a second biopsy either in her armpit area (where her initial biopsy was performed and there is a sizable lymph node with cancer) or in the stomach area where there is also a sizable lymph node with cancer. Depending on which area the surgeon decides to do the biopsy will depend on how long it takes for her to recover. The stomach will be more invasive and require more recovery. Regardless of where they do the biopsy, she most likely won't start chemo for another 2 weeks.

So now, we wait to get on the surgeon's schedule and ultimately get the biopsy done before we can determine what we are dealing with and what our "new plan" will be.

Although a bit down (psychologically), she is sore from getting the port put in, has moderate neck and back pains (from the cancer near her spinal chord), and is fatigued. However, as you all know, she is one tough chick and doing pretty damn well considering! Hopefully we will know something tomorrow about the biopsy schedule. I will send an update as soon as we know more.

Tripp