Home Sweet Home!

home

After 16 days in the hospital, I am thrilled to say that I am back home and getting settled! It felt great to put on real clothes after sitting in a hospital gown for so long. Of course, Bell Ambulance took excellent care of me again, complete with gifts of a warm, soft blanket, a cozy hat and scarf. I have to admit, I was a little nervous about leaving the hospital, where nurses came at the push of a button. I’m very weak and concerned about how I’ll do at home. But it definitely feels good to be home!

I’ll be setting up a spreadsheet tonight for times when Andy is at work and the girls are at school. I’ll need someone to check on me during those times. Bring a book or something to do. 

 

G-Tube

I had the procedure to place the G-tube on Tuesday. I was extremely nervous going in because the surgeon warned me that it would be very difficult to get the tube in place given the number and density of the tumors in my abdomen. There was a possibility that he would not be able to place the tube. The procedure was late in the day, so it was a hard day contemplating what would happen. 

Finally, it was time to go under and I put all my faith in the skilled hands of my surgeon. Happily, I woke up to (mostly) good news. He was able to find a window to get the g-tube in place, and I woke up with the tube out of my throat. It was only a partial victory, though. The stent was already being crushed and the g-tube would only be able to be used for venting. Originally, it was hoped that it would also be able to be used as a feeding tube. My tumors are too extensive, though and nothing can get past my stomach. I will continue on IV nutrients. 

The goal is to have the g-tube drain my stomach via gravity, so I don’t have to be tethered to the wall suction unit. The surgeon wanted me to stay on wall suction for the first night, just so we weren’t risking symptoms overnight. The next morning would be the test to see if gravity would drain the fluids. We switched the machine off around noon and waited. The gravity drain was working! The good news is, that puts me one step closer to getting home. 

Before the weekend, they started the ball rolling to get me home. I’ll need a hospital bed, an IV, a walker and Home Health Care in place at home before I can go. Of course, nothing happens over the weekend, so I’m back to resting, reading, visiting with friends to pass the time. Monday things will get moving again. Hopefully, I will be home this week. I will need people to check in on my when Andy is at work and the girls are at school. They don’t want me to be alone in case I need anything. I will be calling for help soon. 

Partial Success

Partial Success

When I woke up from the procedure Monday night, I was told that the stent was successfully placed and I felt a great sense of relief. Soon, it became apparent that it didn’t work as it was supposed to, though, and I started getting all the terrible symptoms that brought me to the hospital initially. The fluids were continuing to build up in my stomach and soon I had reflux, nausea and vomiting. Monday night was an extremely rough night without the NG tube in place to provide relief. I saw the surgeon at 6:30am Tuesday, and he ordered the NG tube to be placed again. It seemed to take forever, but by 11:00, the tube was back in place and I started to get relief from the symptoms again. 

Clearly, we are on to step two in finding a solution to this current obstacle. The plan is being discussed and I have decisions to make along with the guidance of my surgeons. The GI surgeon would like to place a second stent. He used the longest one the first time, and was happy with the result, but did say there is another area at the edge of the stent with a partial restriction. He hopes to open that spot up a bit. In addition to the stent, he will place a venting G-tube directly from my stomach. The G-tube takes place of the NG tube that is currently down my nose and tethering me to the suction pump next to the hospital bed. With the G-tube, I will have full mobility with the goal of returning home. 

While we finalize the plan, I am being kept comfortable and resting. Happily, occupational therapy is working with me now to get me out of the room for hallway walks. It feels good to get up and around a little bit. I should have a plan in place today. The procedure may be today or possibly tomorrow. I will try to keep updated. Keep the good energy coming my way!

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. 

Hope

havalen push

It has been a very full week. It has given me hope that things can turn back around. Last week, we had decided to give my body a break from chemo until after the trip. Late Monday, the cancer clinic called and said my 5th line of treatment, Havalen, had been approved and we were scheduled to start Tuesday. This news hit me with a lot of mixed feelings. I was worried about side effects ruining my trip, but the nurse assured me that this chemo is not known to have too many difficult side effects. The other fear, as always for cancer patients, is that too much time off treatment allows the cancer to run wild, so delays are scary. They agreed that if I did an infusion this week to see how it goes, I would be allowed to  skip next week if I was worried about side effects during the trip. That sounded fair enough, so I agreed to get started. 

Tuesday, I went in prepared to start. My medport had other ideas, though, and was not working properly. There was a lot of waiting. When all else fails, they inject a clot-buster and try to draw blood again every half hour. Three hours later, as we were about to give up, the port finally cooperated enough to draw blood for labs. At this point in the day, it was too late to do the chemo push, so I was rescheduled to come back and get some IV vitamins in addition to the chemo. While I was there, I also asked for an abdominal ultrasound, because my PleurX catheter suddenly stopped draining, though it was obvious that the fluid was still building up. Sure enough, the ultrasound showed a moderate amount of fluid, so an order was put in for a line-study on the medport to find out why it was so temperamental and a paracentesis and possible replacement of the PleurX catheter.

Wednesday, I was back at the clinic bright and early, since I had to be at the consultation at Froedert at noon. Everything flowed beautifully this time. What a difference a day makes! The port worked without any hassle, and the infusion was started promptly. Right as I was asking the nurse about the orders for the port and PleurX, Interventional Radiology called and scheduled the procedures for Friday at 6:00am. We finished everything without incident and I had time to get to Froedert early enough to have a nice tea date with my SIL! 

Then, at noon, Andy met me and it was time for the consultation about the HIPEC surgery (see my previous blog for more on HIPEC) I’ve been so hopeful about. It went really well. I liked the Doctor. He explained everything very clearly and answered all of our questions. His concern now is that I’ve lost too much weight and may be too weak for surgery. He arranged for his nutritionist to come in after we were done talking so she could help me gain weight and get ready to handle the surgery. 

With peritoneal mets, the cancer causes inflammation and fluid builds up in the peritoneum (the lining around the digestive tract). I’ve been dealing with that for many months. My tumors are located in the omentum, which is another protective lining that drapes over the stomach, colon and intestines. The way the mets progress is the tumors grow out of the omentum and into the organs. So, the Doctor explained that we wouldn’t know if the surgery was a go until the day of surgery. He would start with an exploratory laparoscopy to see the extent of the tumors and the condition of the omentum. If the omentum is still free-floating and separate from the organs, he can proceed to remove the tumors or even remove the entire omentum. That may involve opening me up, if the omentum has become concrete-like with tumors. If the tumors have grown into the organs and everything is “stuck” together, then he will be unable to do the procedure, and that will be the end of that. 

I am scheduled to see him again in two weeks to do another CT scan and at that point we can schedule the surgery. I’m encouraged that I’ve cleared the first hurdle and am being considered a candidate for surgery. In the meantime, Andy gave them our insurance liaison’s contact information and the requirements she set out so they could approve the surgery for payment. Hopefully, that will be very helpful in getting everything approved. 

The meeting with the nutritionist was one of the most productive meetings I’ve had! I learned so much. She gave me exceptionally helpful advice, including lists of snacks and meals that my digestive system can handle, and what to avoid. She advised me to eat something small every two hours, and she gave me a whole bag full of different high calorie shakes and nutrition bars and powders. I’m on a mission now to gain the weight back so I can have the surgery.  

It’s a lot to take in. A lot to think about. Overall, it was a good week and I’m very hopeful that HIPEC can give me some relief from the effects of the cancer in my abdomen. Now, tomorrow I need to be prepared for a 6am surgery to fix the medport and the pleurX catheter. One step at a time. Being able to drain the fluid will go a long way to help me stay comfortable and it will increase my appetite, too. And then my homework is to go to Disney and get fit and try to fatten up a bit! And have fun with my family. All this will be waiting for me when I get home. 

Triple Negative Shocker

sue 7

Only one week after the paracentesis on Halloween, the discomfort was back and I would need another procedure. Apparently, it was a very busy day in the IR, because normally they can schedule me the same day pretty easily. Andy and I spent the day calling all over Aurora to try to an appointment. Meanwhile, I sat home feeling miserable. Finally, they told Andy to send me to the ER, which turned into a five hour ordeal. Waiting, waiting, waiting. Feeling sick and uncomfortable. Finally, I got the procedure done. I knew that it was time to place the PleurX catheter in my abdomen again so I don’t have a repeat of that wasted day. 

Nov 12th I was scheduled to see my oncologist. I knew that the fluid building up was a bad sign, and I had a hard week wrapping my head around the implications. As I mentioned before, my doctor does not have a poker face. Not even slightly. When she walked in the exam room, she had the most distraught expression I’ve ever seen on her. This appointment would not be a good one. 

Here’s what I know now. After the paracentesis, a sample of the fluid was sent to the lab to be evaluated. The cytology shows that my cancer has mutated from ER/PR+Her2- to Triple Negative. Only 10% of Lobular Breast Cancers are Triple Negative, so this is a real shock. Those of you knowledgeable about breast cancer just felt that sucker punch. The rest of you are probably completely confused. In a nutshell, here’s what that actually means. These symbols stand for a breast cancer cell’s hormone receptor status. Positive ER (Estrogen Receptor) and PR (Progesterone Receptor) status simply means that the cancer cells have a protein (receptor) on the surface that binds with estrogen and progesterone, which fuels the cancer’s growth. HER2 is another protein found on cells that help control how cells grow, divide and repair. Positive hormone status causes the cells to divide and grow faster than usual. The good thing about positive status is that many breast cancer treatments are targeted to work directly against these receptors. 

In other words, there are hormone blocking drugs which block the receptors found on the cells, so the cancer can’t continue to feed on estrogen or progesterone. Any one still with me? Due to my previous 100% positive hormone receptor status, I had a number of drugs that could control my cancer. I started off by taking tamoxifen for 4 years. When that stopped working, the cancer spread to my pleural space (around my lungs), I switched to Ibrance/Faslodex. That also was not effective for very long and I had progression to my peritoneal cavity. That’s when we switched to oral chemotherapy. The goal was to stabilize the cancer, and then switch back to a different hormone blocker to maintain stability. But, the recent cytology on the fluid now shows that my cancer cells are no longer hormone receptive positive. That is where the term Triple Negative (ER- PR- HER2-) comes from. The cells are no longer fueled by estrogen or progesterone or HER2. So I will not be able to go back to hormone blockers. 

Another step we took involved further genetic testing. I did a Foundation One test to see if I had any of the genetic mutations that are being targeted in clinic trial treatments. Many of you have heard of the BRCA gene. It was in the news frequently when Angelina Jolie opted for a prophylactic double mastectomy due to the gene. There are other genes that are also important in breast cancer.  A big one for triple negative cancers is PDL1. There is also ERBB2, amongst others. The second hit of bad news was that I don’t have any of the treatable mutations. 

If you’re still with me, what I am trying to tell you is the treatment options that are effective with hormone positive cancers, and genetic mutations are no longer effective against my cancer. A number of future treatment lines I had hoped to try are off the table now. My treatment list is getting short, and for the first time in all of this, I’m scared. I have to remind myself that this is a marathon, not a sprint. This week my doctor is evaluating my options and Tuesday I will start a new chemo cocktail. It will be Carboplatin and Abraxane. I’m hopeful for a good response. 

PleurX and a T-Rex

Rewind one year. Last fall, I started feeling like I had a bowling ball in my gut. My appetite was poor and I was generally uncomfortable. An ultrasound back in January of 2019 showed ascites (fluid in the peritoneal space or the sac around the digestive tract), but it was inaccessible to drain by paracentesis. So, I waited and hoped for relief from treatment. Last spring, the problem kept getting worse. I was starting to look pregnant and suffered heartburn, pain, digestive issues, and a major loss of appetite.  Scans showed some fluid, but nothing too concerning. In June, I managed to have an amazing trip to Seattle with good friends. In July, I took a family vacation to the west coast, but I was not well. I pushed through. The memories with my family will always come ahead of anything else. 

At the end of July, I was on another camping trip with my family and friends for the Team Phoenix annual triathlon. I was miserable. I had to tell everyone to go ahead without me while I let the pain pills kick in. If this triathlon hadn’t been such an important event in my life, I would have gone to the ER right then. But the pain pills helped and I made it through the triathlon to cheered this year’s athletes to the finish line. Somehow, I packed up camp (with a lot of help) and headed home. The next day, I was packed and ready to go to the ER. CT scans clearly showed a lot of fluid had accumulated, confirming what I knew all along. The ER doc gave me the choice to leave and arrange a paracentesis with my oncologist, or to be admitted and have the procedure the next day. I couldn’t stand it anymore, so I was admitted. I made the right choice, because by bedtime, I couldn’t eat, I was throwing up, and I couldn’t get comfortable sitting, laying down, standing or anything. 

What is a paracentesis? Well, it starts with a “Little pinch and a burn,” something every doctor says (I swear there must be a course in medical school entitled “a little pinch and a burn…) as they push the needle gradually deeper into the abdomen with a numbing agent. It hurts. After the needle is withdrawn, a catheter remains in place and the tube is connected to a vacuum sealed bottle which draws the fluid out. They were able to draw 4.2 Liters of fluid, and the relief was immediate. It did not last, though. Less than two weeks later, I had to have another 3.8 Liters removed. The doctor told me that each liter of fluid weighs 2.3 pounds. And, interestingly, it is spot on. I’ve weighed myself before and after each procedure and the weight loss confirmed the amounts. 

The fluid build up signals cancer’s progression. It was time to switch to a new line of treatment. This time we decided to go with a more aggressive IV chemo, and I was scheduled to have a MedPort inserted to make the chemo infusions easier. At the same time, I could feel the fluid building up again, so I called my oncologist to ask if I could have another paracentesis while I was in surgery for the Port. It had been less than a week since my last paracentesis and the fluid was accumulating faster that any of us anticipated. My doctor decided to put in an order for me to have a PleurX Catheter (a tube that remains in place to make draining easier) placed into my abdomen during Thursday’s surgery. My understanding was that they could drain it during surgery, and then I would be able to better control when to drain it at home, instead of waiting for appointment after the symptoms have gotten so bad.

The PleurX turned out to be a good idea, and I was draining 2 Liters every other day for several weeks while the chemo took time to build up in my system. Then a welcome thing happened. Around the 3rd week into chemo, I started getting less fluid when I drained, until there was barely a trickle. My symptoms resolved as my stomach flattened back out. The chemo was working! After nearly a month without any sign of fluid accumulation, it was determined that the PleurX could come out. 

Now they say hindsight is 20/20 and it’s never worth second guessing past decisions, but it soon became clear that we shouldn’t have been so quick to take the catheter out. My relief from symptoms only lasted a couple of weeks and then the fluid started to build with a vengeance. I knew this was bad news. My oncologist does not have a good poker face, and as soon as I saw her I knew it was bad. The cancer had stopped responding to the chemo. She ordered an ultrasound and confirmed that I needed a paracentesis. This was a difficult blow for me. I had just started feeling good for the first time in months. And I had grown accustom to the ease (and painlessness) of draining with the PleurX. I was devastated when they told me to schedule the procedure immediately. 

I was scheduled for the procedure on Halloween. I was dreading it and spent the day prior in tears, fearing the painful procedure. Andy did his best to comfort me, but he too knew the implications of having the fluid come back so fast. The mood was dark. The day started to turn around for me when I got to the hospital. The mood was festive for Halloween and the talk was all about the unusual Halloween snow storm, trick or treating and candy. By the time I got into the procedure room, I was feeling less anxious, almost relaxed. The nurses were amazing and we had great conversations about travel and life and kicking cancer’s ass! After the “little pinch and the burn”, the procedure went smoothly and I felt much better. After it was done, they asked if I wanted a dinosaur escort to back to the waiting room and my loving husband. I immediately jumped on that and said, “heck yeah, who wouldn’t want a dinosaur escort?!” The nurse struggled and squirmed back into her T-Rex costume and we made our way through the halls. It was the best walk down a hospital corridor I’ve ever had. People smiled. Heads turned. High fives were given (which is funnier than you would imagine with short little T-Rex arms). It’s amazing how the little things can do so much to turn a mood around. I ended up having a good Halloween after all. 

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