The path to surgery is paved with tests and good intentions

Thank you so much for your notes of support, your suggestions, your funny stories. Thank you for being there and for helping me to feel less alone in all this.

I did get to move the surgery date. It is now on Friday, September 16 at UMass Worcester with Dr. Laura Lambert. I expect to be in the ICU for two days following surgery, then in the hospital for about 8 days after that. The recovery itself, I'm told, is 3 - 6 months. Of course, I'm aiming for two months.

I am feeling so great right now. It is hard to imagine how I will feel in about two weeks.

For those of you who have asked what you can do, here is my little list:

1. First and most of all, I can use your prayers (or whatever your version of this may be). I welcome prayers for healing, for guidance for the doctors, and for anything else you are inspired to pray for. I cannot overstate the difference that this makes in my healing. I know this is how and why I have come so far already. I thank you from the bottom of my heart for your part in this for my past surgeries, and if you can do this again, it will be huge for me. 

2. Physical presence at the hospital. Once I am out of the ICU, I am told that it would be very helpful for me to have someone in the room to get help if I need it. I know that the hospital is one hour outside of Boston, and that this is alot of hours out of your already busy schedule. AND I won't really be up for conversation or even much to look at. You'll have to bring your own entertainment. But it is helpful and maybe you can get some work done or a book read? This also entails picking up food from my mother and delivering it to me.

3. Meals at home. My parents will be running our household while I am in the hospital. I am not sure how long they will stay after I return home. At that time, we can definitely use some help with food, mostly for the kids and Tiron. 

4. Nighttime help. We are looking for regular help with the kids for nights and weekends. If you know anyone looking for that kind of job, send them our way!

5. Last but not least, if you are involved with our children, we appreciate any support you can give them during this time.

I think that covers it. Let me know if I forgot anything!

These past two weeks feel like they have been all about new beginnings, in a way. Along one vein, we were finishing up summer vacation with the boys, getting ready for the beginning of a new school year. Along another vein, I was finishing up my chemo vacation and getting ready for the next step in healing with this surgery.

Last week was truly the week of medical tests. I was in the ER on Tuesday (more on this later), had an ultrasound on Wednesday to determine the source of the bleeding (which, of course, stopped two days before the ultrasound), had my pre-surgical tests in Worcester on Thursday (checking my heart, etc. to make sure that I was in shape for surgery), and a PET CT scheduled for Friday. My psyche must have said, "Enough" because I mistakenly ate a rice cake before the PET CT, which was strictly not allowed. So, needed to reschedule that.

The ER visit....Warning: This will be TMI for many of you, so you may want to happily sign off now.

On Tuesday night, my stoma started "growing." My stoma is the polite word for the piece of intestine that sticks out of my abdomen. It has grown in the past, and then gone back to its normal self. So I didn't initially worry about it. Around 10 p.m., I was suddenly aware that it had grown to the size of a grapefruit. It was freakish-looking, and it was so large and heavy that it took two hands to hold it up. 

I avoid hospitals but I knew I had to get to the ER. I watched the kids sleeping, thinking that we finally got them to some semblance of security. Now, we will once again disappear during the night, and they will wake up to the unexpected. I felt so badly for them. I hoped this would be a quick visit and that we would be home when they woke in the morning.  We couldn't wake them to let them know we were leaving. That would require taking the time to orient them and explain what was going on, and I didn't feel I had that time.


We called someone to watch the boys, and Tiron and I raced to the hospital in my old car, as opposed to his new car. The kids are not allowed to eat or drink in that car. There was no discussion about allowing a freaky intestine that looked like it was about to blow.

The nice folks at MGH wheeled me into the ER while Tiron parked. I went through the check-in process, all the while holding this thing that was getting bigger and drier and darker. Drier is not good. Darker is worse. Darker means that the blood supply is getting cut off. And, I learned, it wasn't simply "growing;" my intestine was literally coming out of my body.

I have a pretty high pain threshold, so on a scale of 1 - 10 (10 being the worst pain ever), I told them it was a four. Fine. I got put in the waiting room with everyone else. Then I realized....I can't politely wait my turn. And, I didn't do this on purpose, but here is what happened next: I started to act like I was giving birth. 

I got out of the wheelchair and paced. I started screaming. And then screamed louder. A nurse came over to shut me up and I showed her what was going on. (No one wanted to see this before then, and I don't think she did, either.)

Her eyes got large and she ran to find a room for me. They soon wheeled me past a large number of patients in the hallway, waiting for a bed. While I was glad to get fast service, I wasn't so glad to need it.

I also didn't want to need it at the end of August. All my doctors were on vacation, and the new residents had been there only two months. Two residents were checking me out. By my estimation, one was a third-year surgical resident. I'll call him Max. The other doctor seemed like a first-year resident. I'll call her Cindy.

They stood on either side of my bed, examining this enormous, weird thing on my belly. Max would politely listen when I talked, as if somewhere in his training, someone told him that he had to listen to the patient. But I never got the feeling that my words got through. 

Cindy started trying to push the growth back into my abdomen. I didn't watch what she was doing, but I was already in alot of pain and that hurt, too. I'm comfortable dealing with pain, but I scream. I don't mind screaming, but it seems to upset everyone else. Since they couldn't push it back in without my screaming, they stopped. Max decided, a bit too eagerly in my opinion, that I needed emergency surgery, and he left to assemble the surgical team.

Tom arrived to hook me up to an IV. I asked him to use the port in my chest rather than a vein in my arm, and he readily ignored my request, heading straight for my arms. Thankfully, Tiron intervened and convinced Tom that it would be much easier to use my port than to find a good vein. I hate that helpless feeling as a patient, and especially feeling like I have no voice. 

All the while, my mind was racing. I need my limited veins for my big surgery, not this one. If I have this surgery today, it will put off my other surgery, which is more important to my life. Plus, I would not be home for days. Yet another instance for the kids -- they go to sleep, and who knows when they will see their mom again. Not exactly your ideal childhood. I would have to reschedule my next-day ultrasound. And my upcoming PET CT. My mind was trying to handle the logistics.

Cindy returned to my bed. "I saw this doctor once push in a hernia. She's incredible." She looked at me a little shyly. "It's a long shot. Would it be alright if I went to find her? I don't know if she is even here, or available."

"Sure," I told her. Why not? I thought. I live for long shots. Tom had given morphine to me, and Zofran (which I hate), and I was now a little easier to be around.

And then, Karen Kim appeared. It was like the sky was blue and the heavens parted and there she was, next to my bed. Outside my curtained area, the surgical team assembled. Anesthesia was hovering. The surgeon was pacing. He told Karen that she had one shot and had better hurry. They were ready to take me in. Karen calmly and firmly told them to wait, and not to pressure her.

She and Cindy stood on the same side of my bed. They adjusted the bed so that my head was lower than my feet, and I closed my eyes. I could hear Karen tell Cindy that this requires patience, and I listened as she calmly described what needed to be done. I don't know who actually did it. I remember seeing the guys outside, peeking at me through the curtain. And then, suddenly, I felt all better, and I heard Karen say, "It's done. What do you think?"

The other doctors came in to see it - there was alot of disbelief. And alot of relief, but that was mostly mine. I was promptly discharged. They needed the bed.

A few days later, I drove past a man holding up a sign. It said:
Your change
Can change
My life.

I've been too cynical to believe that small change can actually change someone's life. Then I remembered my hours in the ER, and the risk that Cindy took, trusting her idea and going for it. Because of her, we returned home before morning. I didn't have to postpone my big surgery. The act of one person during a night of many acts in a busy ER, her "small change," literally changed my life.

Your prayers do, too, as well as your presence. I don't know how I can repay you. My gratitude is huge. Thank you.

Marie

Even in Routines, Changes Abound

Thank you for hanging in there with me. This road is starting to feel long, though I'm not complaining about that! Just realizing that, if it feels long to me, I suspect that it may feel long to you as well. Please know that I deeply appreciate your being along for the ride, keeping me and my family in your prayers, and doing so much for us.

Friends have asked about the status of the HIPAC (hot chemo) surgery that I was considering. This is a huge surgery, and since things are going relatively well, it is hard for me to jump into it. But, it is still on the table. I need to get a liver MRI first (to check out the spot on my liver, though the PET CT seems to show it is okay). So the HIPAC is on hold for now, and I don't need to make an immediate decision about it.

My two-week cycles are starting to feel routine, but there are definitely changes. One big change (on the chemo front) is that my usual nurse had a baby, so I got a new nurse. Though I knew that this was coming, I still burst into tears...then moved ahead.

The big, positive change is that I had absolutely no stomach pain this past cycle. Yay! I know that more than a few of you were helping to pray for that. THANK YOU! It was like I got an extra day of life.

We had alot of changes in our household, too. Aidan turned seven, and Julian turned four (on the same day -- I like to say "Thank Heaven for 7-11"). I was initially diagnosed with this when Aidan just turned four and Julian one, and I sometimes wondered if I would see Julian turn four. That alone was worth celebrating.

The day before the boys' birthday, we made a trek to Cambridge, VT to pick up our dog! I'm not a dog person or even an animal person. And I like things to be clean. No one could be more surprised than I was about my sudden deep desire for a dog.

After my diagnosis in February, I felt the boys should have a pet. A cat was out of the question (due to allergies) and I immediately ruled out a dog because it would have to live inside. We considered rabbits, since they could live on the screened porch and outside, then decided it wasn't a good fit. We tried to get chickens, but the coyotes got to them before they reached our house. Then I met a friend's dog, and suddenly my view and emotions changed, and I got a laser focus on that.

Kenobi (named after Obi Wan from Star Wars) is a 7-month-old cockapoo. He arrived housetrained, relatively calm (though scared out of his wits), and willing to do what I ask him to do. That alone is a refreshing change for me. Plus, he seems to be smart, which I appreciate, and adores me, so who can resist that? The boys are thrilled with him. Tiron is graciously adapting.

Another big change is my mother's cooking. My parents have been generously traveling from Pittsburgh, PA to Cambridge, MA for one week every month, which basically amounts to every other chemo session. They are gifted at keeping the house running, and my very Italian mother is a fantastic Italian cook. Growing up, we always ate all Italian. I didn't see a bagel or Chinese food until college.

But she jumped into preparing raw foods, and now routinely spouts beans, makes raw hummus, and uses the dehydrator to craft incredible crackers. She starts with my recipes, then enhances them to make these amazing creations that I can't replicate. She even juices wheatgrass and greens. I admit that I am impressed. She still makes meatballs, sausage and ribs for everyone else. The meat dishes aren't tempting to me, the spaghetti is, and I like that the combination makes our house smell like my memories of growing up.

I hope that your summer is going well, with lots of beautiful moments, big and small, and that you are riding the waves of change as they happen. I also hope that you can feel the adoration that surrounds you, starting with adoration from me.

I have chemo again this Tuesday (July 20), and really do appreciate any prayers, positive actions, even smiles on our behalf.

Love,
Marie