Onto the next big thing…

Consider it pure joy, my brothers, whenever you face trials of many kinds.
James 1:2

This timely sentence popped up on my Facebook feed this morning. I so appreciate your support, especially through this most recent stretch of medical appointments, so wanted to share the news from last week.

On Tuesday, we saw my oncologist to get the results of my CT scan. Basically, all of the tumors have grown, so this chemo apparently isn’t working. Bummer for that, and also because my quality of life was so much better on this chemo than on anything else I’ve done!

I need to add that, before this most recent chemo (Erbitux), I was doing FOLFIRI and I recognize that I was super lucky with that. For most people, FOLFIRI tends to work for months, but I, somehow, got SEVEN YEARS out of it. I remain grateful for that. I guess I expected the same for this new one.

Thankfully, I have a few other chemo options, and we are looking into immunotherapy options as well.

So no chemo this week. The anxiety is enough – ha ha. We will use the time to make a decision and then move forward with the chosen chemo after that.

The other good news is that I was able to attend our son’s fourth grade school play. Before the play started, I talked with a mom who was sitting nearby. Making conversation, I asked if she worked in the city. AND, not only does she work in the city, but she heads a research lab for immunotherapy drug development and trials, at the hospital affiliated with Dana Farber! Wow. On top of all that, the play itself was actually enjoyable and fun, and he did a great job.

(Next part is a little explicit – skip the rest if you are easily queasy.)

This weekend is a little challenging so far, as I am having trouble, again, urinating. I thought that the stents would fix this, but there is a tumor in my bladder which can throw off blood clots, and that can…block the path out. I’m drinking water to try and increase the pressure and push that blockage out of the way – I want to avoid another visit to the ER. Again, it is the simple things! Next time you run to the bathroom and feel like it is a bother, recognize that it is a good thing!

Not sure that I would say that my current trials are pure joy, but I will try to see them that way. Thanks again for all your prayers and support. I’m tired, so will wrap up here.

Love and blessings,
Marie

 

 

 

 

Three appointments this week

Thank you for your prayers and positive thoughts, and the many, many ways you are supporting me and my family. I cannot describe the difference it makes in our lives.

No chemo this week – woo hoo! – but instead, I have three medical appointments and can use prayerful support for each of them.

Wednesday: CT scan
Trying to stay calm about this one, hoping the current chemo is working…

Thursday: Appointment with Wound and Ostomy Nurse
Some foreign being seems to be growing out of my belly button. That in itself freaks me out, though every time I show a doctor, they simply ponder it and say, “Hmmm.”  I’ve been trying to keep my worries at bay, not to mention that it grosses me out. On a practical level, however, it is growing WAY TOO CLOSE to my colostomy bag. I’ve already cut back the colostomy appliance as far as it can go. And my makeshift bandage isn’t working as well as it used to. I need help, and I’m hoping she has some ideas for how to manage this or that she can access a doctor who does.

Friday: Get nephrostomy tube removed
I’m not exactly sure what this involves. No one can tell me if I will be sedated (never a fun ride for me) but they did say that the doctor will inject contrast dye to make sure that my stent is working, and, if all looks good, they will remove the stitches and tube. Fingers crossed on this one – I would LOVE to get rid of this tube!

And then – the weekend. Whew. That is plenty of appointments for one week.

Thank you again for all your support!

Love and blessings,
Marie

Visit to the Emergency Department

Tuesday would normally have been a chemo day, but a series of events set me up for a procedure on Friday. While I do believe that God is with each of us, especially when we need him, I was having a hard time feeling the support….but I am getting ahead of myself.

This is long, so I will do it in two separate blog posts. This one will focus on the ED visit. If you want to skip the story and go straight to the bottom line, see the next post.

WARNING: This post contains explicit talk about bodily functions.

Sunday

I had trouble peeing all day. Drinks were going in, but nothing was coming out. Nothing.

That night, I called the oncologist on call (not mine) who recommended that I drink two more large glasses of water, wait two hours, and if nothing changes, head to the ED.

I left for the ED around 11:15. Because the boys were already asleep and it would be scary to wake up and find neither parent at home, my husband stayed home and I Ubered in alone. I was otherwise feeling good and knew that I could call him if I needed him.

Before I left, I texted my energy healer. Just before I reached the ED, she texted back that she would work on me.

This was a new ED for me, and I was impressed with the operations and the people. The check-in woman quickly assessed that I have a complicated history and decided to look it up rather than make me go through it all. Her approach and attitude were above and beyond anything I have experienced in an ED.

Very early Monday morning

My initial ED nurse, Tori, was wonderful. We bonded over kids (as in, when they wake you at 5:30 a.m, iPods are okay, but snacks are not – you have to draw the line somewhere!) and laughed alot. She gave me a cup to pee in and said, “I have to give you this cup, and you have to try, even if we know nothing is going to happen”

The floodgates opened. I am always in awe of how my energy healer works!

But I was there, so we went through the tests. Blood tests, including kidney function, which was fine. Ultrasound, to figure out if my bladder was actually empty. (They couldn’t tell.) And then the resident doctor in charge of my care wanted to do a CT scan.

I fought this scan. I argued that I was due for a scan in two weeks and I hate extra radiation. The resident doctor thought I was being ridiculous – I’ve had so many, what was one more scan? I wanted to flip him off. He listed lots of low-probability but scary outcomes. I’m used to playing the odds, and I’m feeling strong these days so pushed back on them all. He pointed out that I might need a stent and waiting two weeks could endanger my health. That resonated somewhere deep within that I didn’t want to acknowledge, but that internal vibration made me consider it a little.

I told him that I would call my husband, and he asked what information I would get from that.

“He’s a radiologist.” Thankfully, that shut him up and he walked away for awhile so I could figure this out. I called my husband for his opinion, as well as the oncologist on call. They both said it could go either way.  I finally gave in and did the scan.

The CT tech was super nice and made that procedure go as smoothly as ever, and when I returned, I asked for a bottle of water to help flush the contrast out of my body. The gentleman helping me told me that they didn’t have bottled water but he could get a pitcher of water for me. I cringed, thinking that he was going to get it from the bathroom sink, but when he returned with the pitcher, he told me that it was reverse osmosis and it actually tasted really clean. Life was looking up.

Time for the shift change, so I had a new resident doctor and a new nurse in charge of me. The new resident doctor told me that the CT scan showed tumor pressing on my bladder. No surprise there. She gave me my exit papers (I was really impressed with her efficiency – that part typically takes a long time), and told me to sign them and give them to the nurse when she came to disconnect my IV.

So I waited. And waited. And then, I don’t know what triggered it, but I started vomiting.

I carry bags with me, so I was prepared for this, but I needed help. I couldn’t find the trash can. The nurse call button was far out of reach. So I started yelling for help. A cleaning person came by and said he would find my nurse.

When the nurse came, she took one look at me and said, “This changes everything. We have to admit you.”

NOOOO!

I tried to explain that vomiting is just what I do in a medical setting. I showed her the 15 bags that I carry with me. No dice.

She left and the resident appeared, who explained that they needed to admit me and if I left, it would be against medical advice. Fine with me. It was after 3 a.m. I wanted to go home.

The nurse returned and asked if I wanted my IV to be disconnected now. As opposed to when??? She said, “Well, in case you are admitted.”

“No. Disconnect me now please. I am going home.” I had to reiterate this a few times, but she finally disconnected me.

“The attending physician would like to talk with you.”

“Fine.”

More waiting. Then my nurse took me to where the attending was. As we walked there, I noticed that I was the ONLY patient remaining in the ED. All the other beds were neatly made and ready for the next influx. All the doctors and nurses were far, far away, all in one area, typing on their computers and iPhones. I waited awhile for the attending, then said, “I’m just going to leave.” I signed the papers that I had and headed out.

I was finally free, and hoped that I didn’t need to return. When I got into the Uber, the driver offered me a breath mint. At first I declined, then remembered that maybe I needed one…..

Door #3

This was a super tiring day but we ended up, I think, in a good place.

Not surprisingly, the CT scan showed growth. I knew it would, though it is still hard to hear it. The good news is that it doesn’t look like runaway growth. But it is growth, which means that we need to switch chemos.

My doctor was great about discussing options, and feels there are three:

FOLFOX+Avastin

This is similar to what I have been doing, in that I would get an infusion at Dana Farber every other week, and leave with a “to-go” bag hooked to my chest for the next two days. The primary difference is that I would be doing a drug called Oxaliplatin, which gives neuropathy. I’ve done this drug before, and it isn’t fun for sure. But it helped a lot last time….

Erbitux+Irinotecan

Irinotecan was part of my most recent regimen, though the toxicity built up and made me really sick in March and April. So I’m on a reduced dose. Still, they would pair these two. Erbitux, more often than not, gives a skin rash. The good news is, no to go bag. I would go in every two weeks for an infusion, and when I’m done, I’m done for two weeks.

Clinical trial: Erbitux+Irinotecan with the possibility of Avastin added (blind study)

Avastin has helped me this far, so I was intrigued, though a bit concerned about the constraints of a clinical trial. I’m used to setting my own schedule, like taking a week off when the boys start school, or when we have a planned vacation. But they assured me that this one wasn’t that strict and I could have that flexibility. The primary constraint was getting more frequent CT scans than I prefer (every 8 weeks rather than every 12-16).

Tiron and my friend Julie were there with me, and we discussed the options with my doctor and then with the clinical trial nurse (I guess she is a nurse? Can’t remember). They were really generous with their time – I think that between delays, conversations, blood draws and my periodic vomiting, we were in that room for two hours. (15 minutes is the norm.)

I decided on the clinical trial. No real reason, I guess, except that the break from that bag felt really appealing, and I thought, why not try to throw Avastin at it if possible. (No guarantee that I would get the Avastin, but there was a chance.) I had prayed for guidance and felt calmest with this choice, so that helped.

I would start next Tuesday, assuming that I qualified for the study. To determine this, my nurse drew more bloods and a urine sample, then she disconnected the tubing from my chest and I left exhausted.

Later at home, the study nurse called – my proteins in the urine sample were a little higher than the study permits. We are going to re-test on Thursday, just in case it is a passing thing. So, no definite answer yet.

I feel okay about this little bump. I had a long run on FOLFIRI plus Avastin – over seven years with breaks. So I guess it is time for a new line of defense. And even if I don’t qualify for the clinical trial, I can do something very close on my own with my doctor.

As for the skin rash – I’m going to out as much as possible this week because I’m sure that, if I get that rash, I will be feeling shy and self-conscious for awhile!

Thank you for your prayers and support. Sending you my gratitude and praying for your good health!

Love,
Marie

Birthday milestones

The boys had their birthdays this weekend, turning 13 and 10. One is becoming a teenager, and the other is entering double digits. A significant birthday for each of them.

It is significant for me too. I am keenly aware that I was diagnosed shortly after they turned 4 and 1 years old. I am in grateful awe that I am here to witness their growth and to share in these milestones. I honestly didn’t believe that I would make it this far, and that in itself is a miracle.

I am also grateful that this birthday for them is BEFORE I get the results of my CT scan on Tuesday. I can (try to) fully enjoy the day before dealing with whatever the CT scan may force me to deal with.

The doctors, I believe, anticipate growth. I wouldn’t be surprised at that news, based on some recent changes in my body. I can physically feel the growth of one of the tumors, I have pain more frequently and in new spots, and some lymph nodes are newly enlarged. None of those are good signs, though there is always a chance that things are “basically stable.”

Nevertheless, at my last appointment, for the first time, the doctors presented new chemo options for me to consider during these two weeks. This is so that, should the CT scan show growth, I will have had some time to mull the options and can make an on-the-spot decision about where to go next.

My two choices are FOLFOX (which includes a drug that gives neuropathy – I’ve had that before and it is not easy to live with) and Erbitux (which results in a “disfiguring” facial rash – also lovely). While I am grateful to have options, you have to admit that this is a difficult choice.

So I am hoping for stability and the ability to stick with the “devil I know.” In the meantime, I will celebrate the boys’ birthdays with a gratitude that I can!

Please send good vibes, as I send them straight back to you!

Love,
Marie

CT scan tomorrow (Tuesday)

I hope you are having a wonderful July 4! We had a truly lovely day, and are winding up for the evening.

And tomorrow morning at 10:20 Eastern time, I have a CT scan. Prayers and positive thoughts for a stable or improved scan are most welcome.

Sending you love and multi-colored fireworks lights,

Marie

Divine guidance

When I started this blog, I was pretty nervous. I had been having all these spiritual experiences and I even “heard” that I should start a new blog and what the name and focus should be. Would people think I was weird? Way out there? Crazy?

But at some point it became scarier NOT to do it, so I did it.

After I started writing about my experiences, many people showed up telling me – confidentially – about similar experiences in their lives. I felt honored that they would share those with me, plus it made me feel a little less nutty.

As for me, I began to trust that when I got those messages, and if I followed them, they would take me someplace good. I began to rely on them.

I haven’t heard any messages recently. I kind of miss them. Plus, now that I have relied on them, it is a little scary to do things without them. There is a certain security to knowing that someone is guiding me, that they have my back, that it isn’t just me on my own out there.

As I began to realize this, a few friends appeared to tell me about the messages they recently received and the miraculous happenings in their lives, how they are connecting with something bigger than we are. I am again honored that they would share this with me. And it helped me to remember that something doesn’t have to happen to me personally for it to exist. And maybe sometime I’ll get those cool, instructive messages again. Or something else!

In the meantime, I like that these connections exist for my friends and family, and I can bask in that. And going into my CT scan tomorrow, I feel like someone has my back, even if I’m not hearing them.

I hope your guidance, wherever it comes from, takes you someplace that makes you smile.

Love,
Marie

Change in Plans

Normally, I get my CT scans done at Dana Farber, but today’s scan was scheduled at a suburban location of Brigham and Women’s Hospital. I was to arrive at 8:30 a.m.

As scan locations go, it was actually perfect. It was close to my son’s school, so I could drop him off with a comfortable amount of time arrive for the scan prep. The building was easy to find and had ample parking. Walking in, the lobby was bright, the signs were clear, the halls were uncrowded.

When I entered the waiting area for the scan room, one other patient was calmly waiting in a seat. They had two people available for check-in. Both chatted in a friendly, welcoming way.

I decided that I would ALWAYS come here. Boston’s normally packed waiting room was filled with frenzy and anxiety. This place was calm and the air felt clean.

I filled out the form they handed to me….it was a different form than the one in Boston, but the questions were similar enough. One stood out, though: Are your veins difficult to access?

Since mine are, I really appreciated that question. To have any hope of finding a vein, I needed to be well-hydrated, which I was not. My veins roll, so the needle has trouble going in and they need to fish or re-stick. If and when they do get in, the valves are close together, so they typically don’t get a return and need to try again. All this results in huge blood bubbles under my skin and black and blue on top of my skin that doesn’t heal for a week or me.

I used to be polite and say okay. I didn’t want to hurt their feelings, and I wanted to be open to the chance that it might work. But they always gave up and said I needed an IV nurse, and I always arrived home with bruises. So now I know.

I told the nice nurse that I needed to use my port. She pointed to a vein on the back of my hand that looked good, but I know that vein is just a tease – it looks attainable but then rejects the stick as soon as they jab me.

No. I can come back another time.

She left and returned 10 minutes later. She said that she checked the schedules at all the locations where they have an IV nurse and they are full.

I can come another day.

They found an appointment for me at 4 p.m. today in Boston and verified that an IV nurse would still be there. So, I returned home to eat before I have to fast again, write this little note to you to ask you to continue to send good energy this way, and then will prepare to arrive in Boston at 2:30 (to allow time to do the port access and drink the drink).

I’m actually pretty calm about all this – the place felt too good to be true! It’s a bummer to lose this whole day to the scan, but that is the way it is going to go today. The primary bummer is that I repeatedly assured my son that I would pick him up from school, which I can no longer do. One by one, in his world, I am becoming the Queen of Broken Promises and Disappointments.

Thanks so much for your support. I hope the logistics of your day are much smoother, or, if there is a glitch, it is for the better!

Love,
Marie

Scan results good

Thank you for your prayers and positive thoughts for my scan and the chemo that followed.

The scan itself went well, with only one small bit of excitement:

  • They accessed my port, then tested it by shooting saline in and testing for a blood return (does the blood flow out?). Fine.
  • I drank two bottles of contrast or whatever it is. Fine.
  • I lay down on the table to be scanned, and a tech flushed the port again and again checked for a return. But this time, no return. Ugh.
  • She called in a nurse, who tried again and again, moving my upper body into many positions. Still no return. They asked if I had a vein they could use. I have one vein in my hand they could potentially use; I protect that with my life. I panicked and told them that I would rather reschedule the scan.
  • So she tried one more time and, voila, blood return. The nurse was happily shocked – she said that she has never seen that. I simply gave thanks that it happened.
  • Scan itself then went smoothly, and no side effects from the contrast. After all the excitement, I slept much of the rest of the day.

Scan results were good:

Got the results on Tuesday, just before I went into chemo. Good news: No new spots. The current spots are all stable or smaller. 

(Sorry for the delayed report – between chemo and recovery, I’m just writing now.)

All three days of chemo went smoothly. Yay!

Thank you again for helping me through this week and for supporting my family. We really appreciate all of it!

Love,
Marie

The Journey

I was lucky enough to lector at Mass today, and one of the readings was 1 Kings 19:4-8. In preparation, I read the passage several times during the prior days.

Essentially, Elijah is DONE. He wants to simply die in his sleep and be done with it all. But an angel wakes him and tells him to get up and eat. Elijah eats but then goes back to sleep.

So the angel wakes him again and tells him to eat more, because otherwise the journey will be too long.

First of all, I love that the angel prods until he or she gets heard. I’m hoping that means I will get several chances to hear any important messages. And second, telling Elijah that he has a long journey ahead feels optimistic, implying that he still has a lot to do.

But the giving up – I can relate. During my chemo days, I’m just done. I lay in bed and often I feel that if I died in my sleep, things would be so much easier.

But then chemo ends, and I get up. Sometimes I need and appreciate a little extra prodding. Most often, I shower and eat and drink, and when I do, it helps me to keep going. Well, that and a bit of social interaction. The social interaction really feeds me. I try to take one day at a time and, often, the following days are pretty darn good.

I am incredibly grateful to still be here. This morning in church, I also read the names of two people in our parish who died this past week. One name stayed with me and soon after, I learned that she was about to be a senior in high school and died of cancer. No matter how many times and ways I hear news like that, it is sobering.

Hopefully my journey is long, though I don’t want it to feel long in a horrible way. I want it to be long in a good way. But it will be whatever it will be. As long as I am here, I guess my job is not done.

Next stop on the trail: I have a CT scan tomorrow. I typically don’t have a lot of anxiety around my scans, but I do have anxiety around getting poked. They “access” the port in my chest, which means they stick a needle in it so they can do an IV contrast. This is infinitely better than getting stuck in my arm or hand. Actually, I have only one good vein left, and it is in my left hand, so I am endlessly grateful for this port.

Still, I hate getting stuck and this week, I will get stuck on Monday for the scan, and again on Tuesday for the blood draws and infusion. I am taking lots of deep breaths.

Thank you for being along on this journey. Thank you for your prayers and good thoughts. And thank you for staying nourished, so we can all walk together and even socialize along the way. May your journey be long. And fun! Thank you for including me.

Love,
Marie