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. 

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!!

Three Act Plot

Screen Shot 2019-11-21 at 8.08.13 AMWhen I wrote the last two blog posts my husband, Andy, kept telling me to write the third act to give hope to my readers. He is a writer and a theater buff, so he frequently talks about Three Act Structure. Really, he actually does… He says that everything always goes terribly wrong in the second act and that things resolve in the third act. He wants me to hurry up and write part three since the last two posts felt rather tragic and hopeless. I know we’ll get to the third act but, unfortunately, we have a few more obstacles to deal with in act two. 

So let’s recap where we left off. I was on a chemo regiment that worked wonders-briefly. I had a couple of weeks where I felt great, but then the cancer found a way to progress. The result was fluid build-up in my abdomen. So we spent a couple of weeks controlling the symptoms while we worked to chose the best next line of treatment (my fourth). This involved placing the PleurX catheter back in my abdomen so I can get relief at home. Thank goodness, because when they placed the catheter, they removed a whooping 5.1 LITERS from my abdomen. Now that I can control the fluid, it was time to start a new chemo combo, in hopes that the chemo knocks back the cancer again. 

I met with my oncologist, who had a list of three potential treatments. She wanted to research further and consult a colleague before choosing. On Thursday, November 14th, she had decided on Abraxane/Carboplatin, and I was scheduled to start on Tuesday, November 19th. On November 18th, I received phone calls from the hospital’s pre-auth department, our insurance liaison, and my cancer clinic. Since this chemo combo is not part of the standard of care, my insurance company would not approve the drug combination until their medical review board had a chance to review it. On November 20th, the review board came back with their decision. They would not approve the Abraxane/Carboplin combo but recommended a Carboplatin/Gemitadine drug combo. My oncologist now has the option to request a peer-to-peer review with the medical board to fight for her preferred combo or she can accept their choice. She has decided to fight for Abraxane/Carboplatin. 

We are awaiting the decision now. Waiting, in cancer treatment, is the worst part. Waiting for test results, waiting for decisions, waiting for treatment, waiting for relief. Time is precious to a cancer patient. Time off treatment is terrifying. Fear sets in. Is the cancer running rampant while we delay? That’s what it feels like to me. I’m  uncomfortable now and in pain. Will the new treatment turn that around? I have complete trust in my oncologist, and I’m confident that we’ll get on track with a treatment plan again. It’s just that the waiting stinks!! I’d like to get out of act 2 and get on to a resolution! I know my friends and family can’t wait to read Act Three. 

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. 

IMG_7242

I am Not my Hair- Take 2

I am Not my Hair- Take 2

Everything I read about Abraxane, my current IV chemo, says that hair loss starts around the third dose. Last Tuesday was my third treatment and, sure enough, a couple of days after the infusion, I started shedding. It’s hard to describe the sensation. It’s a tingly, itchy feeling. It feels similar to the way your scalp feels if you part your hair in a new place, or leave a ponytail in too long. If you know this feeling, it just feels wrong. 

  Photo Sep 17, 8 40 15 AM   Photo Sep 22, 4 01 40 PM   Photo Sep 22, 4 25 37 PM

 

We started with an undercut, just in case it wasn’t all actually going to fall out. I let Alyssa make a heart with the electric shaver. I kept it like this for about a week.

After the 4th treatment, the shedding and odd sensations became even more pronounced, so I knew it was time to do something more drastic. That something, this time around, would be a purple mohawk. I guess it’s tradition. In 2014, when my hair started coming out in clumps from my first run through chemo, I decided to put the electric shaver in the kids hands and have some fun with it. That time, I was determined to hit cancer hard and never look back. I dealt with the hair loss as a temporary situation to reclaim my health. 

This time around, it has a different meaning to me. The hair loss is insignificant compared to the improvement I sense in cancer’s symptoms in my abdomen. The first time around, I never had any symptoms to indicate cancer was developing. I was strong and healthy before my diagnosis. This time, I have been suffering from various pains, and the accumulation of fluid in the peritoneal lining (the lining surrounding the digestive tract). The chemo has significantly reduced the amount of fluid, my appetite is coming back and I’m starting to feel better. So I don’t care so much about the balding head (except that it’s cold!). 

Thursday night, I decided it was time to dig out the shaver again. I got some pizza and put on the Packer game and we proceeded to shave it off. Ironically, it took me a couple of years after the first chemo to leave my hair alone and let it grow out. I was just beginning to like the length.

Photo Sep 19, 5 10 26 PM

But that isn’t really relevant. The girls decided that Kaylei would do the rest of the cutting and Alyssa would dye it purple.

Friday, my buddy Crystal brought over lunch and we spiked up the mohawk and then cut it down to a more manageable height. My brother and sis-in-law dropped in to witness the beginning of the mohawk! We’ll see how long I can stand the tingly, itchy feeling. I’m thinking pretty soon it will be time to buzz it all off. I’m collecting warm, fuzzy hats now. Winter in WI is not the best time to be bald…

sue n cathy

If I’m going to sport a purple mohawk, I better go bold.

Photo Sep 27, 2 40 00 PM

Soon, I’ll be able to make a new “hair raising” video!!

 

Once in a Blue Moon

infusion chair

I’m changing my handle from “Queen of Side Effects” to “Blue Moon”. It seems every time my doctor talks about side effects that happen only once in a blue moon, they happen to me. And it works well with my last name (Blue Moon Knight). So, yesterday I experienced something that only happens once in a blue moon (in 2% of patients, to be precise).

After working through insurance delays, and lab test, and a surgery to insert a MedPort, I was set to start Taxol, the iv chemo that would be my 3rd line of treatment. 

I arrived at the clinic and went back to the lab area to have blood drawn. I was happy to be able to access the MedPort (more on that procedure in the next post) and give my veins a break from the constant pokes. This is where the day started to go wrong. They could flush saline into the port, but no blood was coming back out of the port. We tried all the tricks-raise one arm, raise both arms, look left and cough, look right and cough. After about 5 syringes of saline, I was sent back to the infusion room to see if the nurse would have any better luck. I ran through all the tricks again, but I drew the line at turning cartwheels. No blood. So, it was time to inject something to break up the clot. Unfortunately, we needed to give it 30 minutes to work, so it was decided to use my arm for the blood draw after all, preventing further delays in starting the IV. 

visit from a friend

At the end of the 30 minute wait, my friend stopped in and gave me some good luck to get the port flowing. It worked and we were back in business! I was hooked up to saline and a variety of pre-meds (Benadryl, steroids, etc) were given to help reduce the side effects of the Taxol. All was going well, and soon I could smell the chocolate chip cookies baking!! Yes, you heard right. Another friend was there volunteering in the clinic, and part of her duties include baking cookies! I got the first one hot out of the oven! I’ll take the silver lining wherever I find it.

A couple hours into the appointment, it was finally time to add the Taxol to my IV. Immediately, my day turned upside down. I felt the drug the instant it hit my bloodstream. Suddenly, everything felt wrong. Thankfully, Andy was there to get the nurse, because I couldn’t function. Within moments, I was having a severe allergic reaction to the new chemo. It’s almost impossible to put the experience into words. I felt heat and pain spread through my body. My heart rate skyrocketed and my blood pressure went out of control. My face turned hot and red and I broke out into a terrible sweat. I was in agony, throwing up, unable to breath, open my eyes or answer questions. I’ve never experienced anything like it before (and hope never to again!) I had three nurses adding stuff to the IV to counter the reaction. I was given oxygen. The doctor suddenly appeared by my side, rubbing my arm, reminding me to breath, asking me questions, and reassuring me that I was going to be okay. My mind was racing almost as fast as my heart. Now what? If I can’t tolerate this treatment, what options do I have left? All of it was completely horrifying. 

Gradually, the meds they gave me started to relieve the symptoms and I was feeling better. They mentioned that we could try the infusion again, at a slower pace, but we all agreed that it wasn’t worth the risk. The reaction the first time was dramatic enough and I wasn’t ready to experience that again. Ever! 

The doctor eased my fears about what we would do next when she explained that my reaction was to the other drugs mixed in with the Taxol. Luckily, there is another version of Taxol which does not contain the same mix. She would switch me to that. Of course, that means one more delay in treatment, pending insurance approval and a holiday weekend. I am now scheduled to start treatment next Tuesday, meaning I will have gone without treatment for over a month. It is frightening to think of what the cancer is doing without anything to fight it, but I am hopeful that the next infusion goes much more smoothly, and I can get back to kicking cancer’s ass. 

In the meantime, Andy’s company gave us two tickets to the Packer game tomorrow night. I am super excited. I’m a lifelong Packer fan who has never been to Lambeau Field. Nothing is going to make me miss this game! Bucket List item-Check!