Obstacles

Obstacles

disney fam

Disney World was amazing. It felt good to get away and feel the warm sun on my skin. We picked the perfect resort. Of course, the parks were incredible and we had a wonderful time together. We couldn’t have planned the trip any tighter, though. I was very sick most of December and January and the trip nearly was canceled too many times to count. I pushed through increasing sickness and managed to have a great time. I’m so happy we went and I’ll treasure the memories we made together in that Magical place. Luckily, the flight home was uneventful. 

Once home, I really started to get sick. My regular oncology appointment was the next day, so I went to bed and waited for my appointment. By Tuesday, I was throwing up continuously and my doctor decided I needed to be admitted to the hospital. I had a CT scan that day, which showed that the tumors in my abdomen had grown and spread and were now completely blocking my intestines immediately below my stomach. This is the reason I have been unable to eat or digest any food or water. It was a long day with a lot of new doubts and fears. 

Unfortunately, Andy had to leave to get some sleep for work the next day, so he missed it when the doctor came in to tell me the bad news. He told me about the obstruction and said that normally this is surgically repaired. In my condition, they need to avoid surgery, though, because I’m not healthy enough to heal. Because of all of this, I am also no long going to be able to do the HIPEC procedure that I was putting so much hope into. I called Andy right away. I was left with this news to dwell on all night.

NG tube

The first step to getting some relief from the nausea and vomiting was to have an NG (nasogastric) tube placed down my nose to my stomach so they could drain all the fluids and secretions that were making me sick. I’m not gonna lie-the placement of an NG tube is not for the weak of heart. It took two attempts and it was pretty awful. I knew it would bring me relief from the symptoms, though, and it has been a lifesaver. I no longer have nausea and vomiting and I generally feel pretty good. The tube is uncomfortable and gives me a sore throat, but it’s worth the trade off for feeling better. 

As Wednesday went on, more information started coming in on other options for me, and I started to feel more positive and confident that I still have the possibility to get beyond this big hurdle. I consulted with a number of Doctors and Surgeons and learned that there are less invasive options we can try. First, they can attempt a scope down my throat, through my stomach and attempt to place a stent to hold my intestine open at the point of the blockage. This is the most desirable option to get me back home. If that doesn’t work, they may be able to place a venting-gastric tube out of my stomach to take the place of the NG tube I currently have. With the NG tube, I am stuck in a hospital with a suction apparatus attached to the wall. With a venting G tube, I would be free to go home once everything is working and I’m feeling better. This is also a difficult procedure because the tumors are in the way. 

But first, I needed to get a bed at St Luke’s hospital where the procedure can take place. That turned out to be harder than expected. I spent a couple of extra days just waiting for transport. Meanwhile, I was feeling good, reading, watching movies and being very well cared for. I had some really meaningful visits from my amazing doctors (and Team Phoenix founders!) while I waited and each visit boosted my confidence that I could overcome this overwhelming obstacle.

It wasn’t until Friday morning that I got word that a bed had opened up for me at St Luke’s. Andy was working that day at Bell Ambulance and, ironically, his former co-worker was my NP at the hospital, so between the two of them, I got a deluxe ride with Bell. The crew was really nice and the ride was smooth. To top it off, right as they were transferring me to my bed, a woman walked in with the most beautiful bouquet of flowers! From Bell Ambulance. Nice touch!!

Bell flowers

PICC line

Being Friday afternoon, I thought I’d be in a holding pattern until next week. Was I wrong. I had so many doctors and surgeons stop in and some really good consultations. The plan was being set firmly into place so that on Monday we’d be ready to do the procedure. Since I cannot eat anything, I got a PICC (peripherally inserted central catheter) line placed so that I could start getting IV nutrients over the weekend to build some strength.

Now I have Sunday to rest, strengthen and watch the Super Bowl. Monday is going to be a really big day. I’ll take all the love and support the universe can send. 

5th Line of Treatment, but first…

Disney

WE’RE GOING TO DISNEY!!

At the beginning of the school year, when we saw that the kids had a long winter break, we decided to take a trip to Mexico. As fall went on, though, my cancer was not under control and I was uncertain about a trip out of the country. By December, my oncologist came right out and said no. She didn’t want me out of her reach in a foreign country. She did say I could travel within the US, where she would be able to help me, if needed. So, we decided on Disney. My kids are teens now, and it’s something I’ve always wanted to do with them. But not over winter break! So we are going in January!

It was a good choice to postpone, too. Winter break for me was mostly bed-ridden. I was very sick. My 4th line chemo was brutal. It was like having the worst flu imaginable for 5 out of every 7 days for two weeks, and then a week off to “recover”. My week off didn’t give me any relief, though, and I was beginning to realize that it was symptoms of the cancer that were effecting me, rather than side effects from the chemo. At this point, I had already booked the trip for my next week off chemo. I came close to canceling a number of times, but decided to wait for my next oncology appointment before I made any drastic decisions. 

My appointment was the 2nd day of 2020. The doctor told me the current chemo wasn’t working ( which I had already suspected) and I’d be taking a break while the next line treatment goes through the insurance approval process. At that point, I asked if I could take a break until after the trip. I need to let my body recover a bit and I need to gain weight. I’ve barely been able to eat, and when I do eat, I end up super sick. I’ve lost way too much weight. She agreed. I’m still uncertain about the trip. The chemo is out of my system, but I’m still suffering a lot of symptoms from the cancer. I can’t eat, my digestive system is a mess, and I’m very weak. The trip is fast approaching, and I want to make it happen. 

My doctor also referred me to a doctor at Froedert, who does a procedure that sounds very promising for me.  It is called HIPEC.  http://www.hipec.com  HIPEC is the surgical removal of all visible tumor in the abdomen followed by a “bath” of heated chemotherapy directly to the abdomen. In medical terms this is referred to as cytoreductive surgery (CRS) and hyperthermic intra-peritoneal chemotherapy (HIPEC). So far, this surgery has been used mostly for patients with mesothelioma, pseudomyxoma peritonei and patients with peritoneal cancer from a colorectal tumor. Some hospitals also offer HIPEC treatment for other indications, such as peritoneal metastasis from gastric or ovarian cancer. My oncologist does not know if it’s been used with Metastatic Breast Cancer yet, but my mets are to my peritoneum (lining around the stomach and intestines), so I’m hopeful that I will be considered as a candidate. I am worried that there may be a fight with insurance if I’m the first MBC patient to have HIPEC done. 

HIPEC

I have my consultation for the surgery this Wednesday. I’m very hopeful that the surgery could give me the relief that I need from the symptoms of the peritoneal mets. I will fight to have the procedure done, no matter what it takes! It sounds so promising. 

But first, 

WE’RE GOING TO DISNEY!!