One Last Post

This is Andy, posting what I think will be the last post on Sue’s blog. She did a far better job sharing her journey than I could have, and she probably would have done a better at this too.

The final celebration of Sue’s life will be at the Cooperage March 8th (Sunday) from 1pm to 5pm. Anyone who sees this, and wants to share in the joy of having had Sue in their life, is welcome to attend.

I was going to write more, but I don’t think I’m up for it yet. So, instead I am going to copy and past a post from Sue, from about a year ago, on her 5 year cancerversery. I think it does a better job capturing the joy, courage, and excitement to be alive she had in this last year better than anything I could have said.

The pain from losing her is real, still fresh and raw and bubbling, looking for insidious ways to creep into my thoughts and heart. But the joy and love and light from remembering her is also strong. Neither should be set aside too soon, but I plan to make sure the last, lingering thoughts of Suzanne Knight, my wife, love, and partner in all things are on her smile, her laugh, and the joy she brought to us all.

 

fiveyearsToday marks the five year anniversary of the day I heard the words nobody wants to hear. “You have cancer”. The five year “cancerversary” is a big milestone for most cancer survivors because, statistically, after five years the chances of recurrence drop significantly. For me, that part no longer applies since my cancer has already metastasized. Despite that, I’m still going to celebrate my five year survivorship. I’m still surviving. Looking back, these five years have certainly had rough spots. I’d be lying if I didn’t admit that.

These five years have also been packed with love, adventure and great experiences. Looking back, these have been some of the best years of my life. I married the love of my life. We bought a house together and built a home (We’re days away from finishing our kick-ass bathroom renovation!). We’ve become a tight family of four. I joined Team Phoenix and gained an entire family of amazing sisters. I completed two triathlons, and encouraged my kids to try it. We took an epic two month long trip (our “Familymoon”) in a vintage RV named Cliff. We camped and explored several National Parks, include some amazing places in the Canadian Rockies. We rode horses to a tea house high over Lake Louis. We’ve come face to face with a grizzly bear and her baby. We’ve ridden motorcycles through these breath-taking National Parks. We’ve slept under a meteor showers in the Badlands. We’ve hiked glaciers, stood on the edge of the Grand Canyon, sat in natural hot springs, jumped off a cliff into an icy Blue Hole, and hike to remote Cliff dwellings. I’ve been blessed. These five years with family and friends have brought me so much joy.

Our plans for new adventures are always bubbling. We have a couple more trips planned for 2019 already and my bucket list is over-flowing with adventures I want to share with my family. I also have a few applications in for retreats that have been established for cancer patients. One includes the family and one is all about pampering little ole’ me.

I can certainly say that cancer has changed my life in many ways. It has become cliche, but the diagnosis has made me more aware of the things that are important. It has helped me shed the things that were holding me down. It  has taught me to listen to my body and take care of my health. It has given me a sense of urgency to live fully and pack in the things I want to do and share with my family. It has taught me to say “yes” to the challenges, get-togethers, and activities, in case I don’t get another chance. (Well-except for the “Frosty 5K” race that my friends did in spite of negative 20 degree temperatures- That challenge was not for me…) It has also made me aware of my mortality (a condition all of us share). Not one of us knows how long we have to live, and nobody has an expiration date stamped on them. I now take each day as it comes and do what I can. Some are better than others, but I’m sure that’s not unique to me.

Life has become a tough balancing act, facing an incurable illness. The pains and fatigue and sickness are real. The fear of what the future holds is real. My goal is to not let that fear paralyze me. Fear won’t stop me from planning my future. Fear won’t stop me from pushing my limits. Fear won’t stop me from taking each day for what it is, good and bad. My goal is to stay strong (thank you Team Phoenix for making it a priority to be Strong, Proud, Alive and Re-Defined!!). My goal is to raise my daughters and give them the opportunities to learn and grow and explore the world. My goal is to thrive despite a cancer diagnosis. I’ll always have hope that the good days outweigh the rough days. I’ll always have hope for a cure. I’m taking it one step at a time. Today-I’m celebrating five years thriving with cancer. I hope there will be cake! (Honey-will there be cake?)

Not The Best Valentines Post

This is Andy, posting for Sue

After a long night and rough morning, Sue decided to change from palliative to hospice care, and we’re started the process for an inpatient admission.

Obviously we have a lot on our minds and hearts today, and are asking for a little time and space for ourselves. We will do our best to include everyone who wants or needs time with Sue, just not today.

As a valentines post, this is about as awful as they come. So, here is a memory of one of the 3 million times I took Sue’s picture without her looking, only to have her catch me immediately after. She would then usually say something about not posting it, right after I hit post. Hug and hold whoever is important to you today, I plan to.

 

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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.