Truly Good News

This morning it was confirmed: my body responded super positively to the chemotherapy. Dr. Wilfong said it had a “Complete Response”: there is no evidence of the disease. HALLELUJAH!!!

I have an appointment tomorrow with the radiation oncologist, who may recommend a short course of radiation on my arm as insurance. 

But, as far as the chemo...I am finished. I get to have my port taken out as soon as they can get me in.

On the cautionary side: there is a 20% chance of reoccurence which usually happens in the first 2-3 years. So, I will continue to get blood work done and see him every 3 months for the first year...and then every 6 months for the following two years. 

But, for now, this is the best news that was possible to get. I am utterly grateful and have a sense of being able to breath so much deeper than I could before.

It will take me a long time to process all I’ve gone through during this time: the level of fear I’ve felt, the depth of love I’ve felt....the inner demands of having no choice but to stay in the present moment....being hit over the head over and over and over about how little control we have over things we so want to control....knowing that there is beauty, sweetness, laughter, and joy to be found even in the midst of so much darkness....knowing that if we can manage to just do “the next right thing”, the road will continue to open up and show us the way. 

Trusting the process...

 even when it’s so hard to do. 

Feeling fireproof today.

❤️❤️❤️

Patience is Not My Virtue

A quick update to share that I arrived back home on Monday. Saying goodbye doesn't get any easier. Especially this time....leaving behind so much beauty (not to mention my 🧡) and flying back to such heavy duty challenges....including a sky full of so much smoke we couldn't see the ground until we were just about ready to land.

I had a (negative) Covid test on Tuesday and this morning I went in for my PETscan. I've had this scheduled for almost two months and it's the test that is supposed to show if the chemo has gotten all the cancer. I had hoped to get the results today (Thursday) but had a call from a nurse just to set up a phone appointment with doctor to discuss them on MONDAY🤯🤯🤯! 

I emailed the doctor begging to hear more before the weekend and just received this response from his assistant: "The news is good, you've had a great response to treatment. The Dr. will discuss it in more detail on Monday." I'm so relieved to hear this but still would feel much better talking about it and knowing more definitively the answers to all my questions. Mainly: IS IT ALL GONE?! This is the answer I've been wanting to hear and was hoping to celebrate today.

I should probably be feeling happier that her message was positive. I know it could've been much worse, so it does help. But, I'm extremely frustrated by a system that would set things up this way. I've had the PETscan scheduled for so long. Why aren't the follow up appointments scheduled along side them? Aghhh. Just sharing while it's all very raw. The emotional rollercoaster of this ride cannot be overstated!

Believe me, I will be repeating the words in that email to myself for the next four days until I talk to my doctor: the news is good, the news is good, the news is good.

More to follow on Monday.

Thanks for your continued love, prayers, and support!

❤️

Chemo #5 and Getting Busy Living

Yesterday was my 5th chemo infusion. 5 down, one to go!

Each time I go in, I meet with my oncologist, Dr. Wilfong, for an exam and to go over the bloodwork. If the numbers aren't good enough they would cancel the infusion. My numbers were "good enough" but even though I think my body is handling this really well, it's interesting to see the downward graph of some of my white and red blood cell counts. This explains the heavy sense of fatigue I'm feeling more and more as time goes by. I've termed this feeling "loggy" as the best way to describe it. It's a kind of tired that sleep doesn't help. I've learned that this is a totally normal reaction to the chemo.

We also looked ahead at what's coming next for the first time. After my final infusion on July 30th(!), they want to wait six weeks to do another PETscan. If all goes as hoped, it may very well be followed by 3 weeks of daily radiation for added insurance that all the cancer cells are gone. If it doesn't go as hoped, we will have more to talk about. He is very optimistic but it still feels scary to even have to think of that kind of idea. And that is the hardest part of having cancer. There is no guarantee that if you follow all the rules or do things "just right" that all will be well. What a challenging thing to learn to live with--and so many people have to do just that. But, until I know more, I am going to go with the idea that my body is continuing to heal in remarkable ways.

I am so happy that he is still very supportive of me taking a three week trip out of the country. He is a doctor who focuses on the whole person and I really appreciate that. Everything is a calculated risk and his support means a lot. He said the timing is perfect as I leave three weeks after my last treatment (when I should have my strength back) and come home right in time for the follow up testing. 

On that note, Han and I have had to find a back up plan due to Iceland joining the EU in not allowing American visitors in due to our high rate of Covid. This caused such disappointment but we've now totally switched course and will be meeting in: Aruba! Where there is a will, there is a way! He'll feel right at home since it is a Dutch island where he will be able to speak with ease! It is one of the only countries welcoming Americans right now and they have a layered entry process which includes submitting a negative covid test and registering where you'll be staying. We will be staying here for the entire three weeks...so you can imagine our excitement! Who knew, that along with all the @#!%, this unexpected detour would bring this kind of beauty and happy anticipation?!

In other news...I'm home alone for the next couple weeks. After three months(!) of being here right when we needed him most, the time felt right and Zack departed last weekend. He camped along the coast for five nights and has safely arrived in Long Beach, CA. to spend time with his dad and Isabel. He still doesn't have word on his new start date but now he'll be a little closer when that time comes. It was super hard to say goodbye but at the same time, we are so grateful for the unexpected time we had with him! He left on Sunday and Mom took off on Thursday for her big road trip with (my brother) Eric and (his 15 year old daughter), Chelsea. Three generations driving a camper down the coast...right behind Zack! I'm so happy for them all and it's fun to hear their progress reports as they go.

 

They're taking the same route, with very different accommodations-

both look like so much fun!

So, it's a big change around here. After months of necessary nesting, there is a shift toward LIFE, MOVEMENT, and CONNECTION. Growth in the midst of all that we're going through feels so life affirming and of extra importance right now. Even now...maybe especially now...with the heavy fog of the pandemic adding layers of fear to all we do. If we've been reminded of anything it is that there is no time to waste. As a friend of mine who went through her own cancer scare said often: it comes down to a choice to "get busy LIVING". And that is what we are all doing. The shift feels-and is-pronounced and real. 

A special message left by a slug(!) on our deck the other night!

I think it's a pretty clear sign.

Until next time, take good care, All.

❤️

Chemo #2 and the Big Buzz

Now, I'm getting caught up! Whew!

Which brings me to: my second chemo yesterday.

All went well. I had a front seat window view and it took 5 hours. I met with my primary oncologist for the first time (Dr. Modarressi) and he was encouraging. My arm was a pain but I expected that. I worked on my computer, listened to podcasts (thankful for the noise cancelling that helped tune out the hospital noise), napped for a bit...and before I knew it the time was up.

Zack was there to pick me up.

We celebrated with a Bubble Tea.

Earlier in the week, my hair had started falling out. My scalp had felt tender and that night, It just came out constantly. When I took my headphones off after chemo, they were covered in hair. As was my chair. I couldn't believe it was time already. But it was. So, we didn't waste any time.

Going for the glamorous, gypsy, stormtrooper look.😉

And that is that. It feels very odd. I liked my short pixie cut much better. Han says I'm really pushing the whole aspiring to be like Pema thing a little too far. Ha! 

But, I do feel like it's a continuation of the learning

--and letting go--

I've been doing these last years: 

I am not my role. 

I am not my house.

I am not my things.

And now:

I am not my body. 

I am not my hair.

It's like peeling an onion. 

Underneath it all, I am always me. 

More and more me.

❤️

Chemo #1 and an Unexpected Bad Break

These first few posts are a little jumbled time wise and going forward I hope to write as it happens but this is the nature of getting started. 😉

So, on April 17th, I had my first (out of six) chemo treatments. Having taken mom in for her treatments, I really had a jumpstart on what to expect. Usually, infusions are given in an infusion room with lots of chairs set up looking out the windows...but for my first time, they wanted to go extra slow to monitor for allergic reactions so I was able to get a private room with a bed, which felt like a luxury. The nurse I had was extra nice, having treated mom her for immunotherapy the day before. I don't think they come across a mother and daughter in treatment at the same time very often (thank goodness) and in some ways it is humanizing our case to them, which can only be a good thing.

The treatment I am getting is called: R-CHOP. It is very effective in treating my form of lymphoma. I felt for my body, not knowing what was about to hit it.

I brought in reinforcing supplies and felt the love from family and friends holding me in their heart as I started this treatment that nobody wants to experience.

The treatment itself was not hard, physically. It was just a lot of crazy stuff put into my body at once. In addition to the infusion, I had to swallow so many pills and go home with a chart of what to take when and carefully track it. Having barely taken medicine before, it felt like a real assault on my body. But, one I knew was my best chance of getting better. Emotionally, it was a very big deal. I still felt partly in denial to find myself in that position.

They told me that it usually takes 2-3 days for the effects to fully hit and that everyone responds differently so you can only wait and see. I ended up feeling like an anthropologist in my own body. I was in total observation mode, wondering about every new and unusual feeling. My treatment was on a Friday and by Monday, I started to feel the heavy grogginess and overall "yuckiness" that everyone I've talked to who has had chemo says is so "hard to describe". The anti-nausea medication did a good job of keeping the nausea at bay (which was my worst fear) but for 6 days I felt pretty crummy: no energy, no appetite, when I could eat food tasted flavorless, and the hardest part was how easily I got dehydrated. I had to go to the toilet constantly (which they stressed is a good thing...to help my kidney's flush out the cancer cells that were dying at a rapid rate). This was especially hard at night when it was really hard to fall asleep again after waking up over and over and over. I learned to drink a glass of water regularly whether I felt like it or not and this helped a lot. I had to gauge how long and frequently to take the anti-nausea medication, which had its own side effects. But I was very worried about "getting behind it". It's all such a learning curve! 

The hard part in this situation, is that unlike the flu where you feel awful but know that you will get over it and feel better--with chemo...you know you are going to have to go though it over and over again. In the midst of feeling so bad that felt very overwhelming.

At the same time, Zack made sure I walked every day, even when I didn't feel like it (and sometimes the boys came over and joined us).

Mom made sure I ate something on a regular basis and did everything she could to cheer me up. 

Han & I continued to video chat several times a day and the photos he sends me each day continue to open up my world. My life over there feels alive and well and I feel close to it -and him- thanks to the magic of the internet (and 💕 ).

Since I'm writing this in hindsight, now I feel stronger about it. Knowing the worst part was really the first week and that I could look forward to two weeks of feeling better and better between treatments felt/feels doable.

~~~~

On the 15th day after my chemo (4/30), I was feeling really good. The kind of good you can only feel after feeling REALLY bad. Eli had stopped by for a visit and I had so much energy, I thought I would make a little lunch for everybody...which was a huge step after being served for the last couple weeks. I was feeling so happy to be feeling so well. I was moving too fast. I had just handed them their plates, headed back into the kitchen, and caught my foot on the step up. A step, I've made millions of times successfully. I fell and fell hard. I couldn't catch myself with my bad arm (the one with the tumor in it that has been hurting for the last 8 months). I just fell. And I heard the crack and felt it immediately. The middle of my right arm, the arm I'd already been babying since August, was not working the way it was supposed to. I'd never felt so much pain.

We called the aid car. They got me set up to make it to the ER. Eli drove me. I was in such pain. X-rays were excruciating. It turns out I fractured my arm in two places. One, up top, on my shoulder. And a giant break in the middle of my humorous.

That explained it. The doctor working said it was bad enough that she'd usually admit me to the hospital for several days for pain relief alone but because of the virus they would do anything to avoid that with my compromised immune system. She wanted to send me home with pain medication to see if I could make it on my own. That felt daunting. I ended up leaving with just a sling (which wasn't nearly enough to stop the bone from shifting and causing pain) and some heavy duty pain medication. They said I'd come back in a week to follow up with an orthopedic surgeon. 

Zack and Eli were both waiting to take me home. They were so calm under pressure and took such good care of me!

Luckily, when I got home I contacted, my guardian angel, Dr. Chun, who was my "squeaky wheel" once again. He got me into the orthopedic office the next day. They put on a much better compression brace that made all the difference. I can't fathom if I'd had to go a week to get that. I'm still processing my feeling of PTSD over how that whole situation was handled.

Even with the brace, I needed a ton of help. Zack had to set his alarm several times a night to give me the medication and to help me to the bathroom, which was a 20 minute ordeal. I felt (feel!) full of angst at how I managed to make an already hard situation SOOOO much harder. If only, if only, if only.

And yet...here I am...one week later....and again, the pattern of healing is showing itself. Already, I am feeling stronger. I had follow up X-rays done yesterday and they said it was holding steady in place, which is really good news. My arm is still so painful but the rest of my body is learning how to adapt and compensate. I can get out of bed on my own. Zack can sleep through the night. In one week! I never would've guessed it. They said if I wasn't having chemo they would want to treat it surgically by putting in pins but it is not an option for me at this point. They are hopeful that in about 12 weeks it will heal itself. I have 15 weeks of this chemo process left so it basically will be a side by side journey. What the heck?! 

I've been thinking about this podcast a lot from Rob Bell where he talks about how life comes in waves. It's so true, isn't it? And I do trust, for sure, that the giant, scary waves come...and then they go. And sometimes we can feel upside down with the pummeling...but we can trust that if we ride them out, we will come out the other side in one piece. And there will even come a day when the sea is as calm as can be and we can't even imagine that once there were giant waves crashing in this very spot. I trust this pattern...and that makes all the difference. Even when I'm in the thick of it. It's so interesting that when the giant waves sneak up at first, the self-talk is so strong and predictable, "I'm not strong enough for this. I can't do this. This is too hard. This can't be happening." And...then, before you know it: you adapt. It doesn't stay so raw as it is in the beginning. The pattern has shown itself to me so repeatedly and clearly these last weeks. I am so thankful for that!
❤️

Hair Party

In anticipation of my upcoming hair loss, I decided the best idea would be to go short so that when it happened, it would be manageable. Since my hairdresser is closed due to the virus, I am so lucky that Shawn (my sister-in-law, who is now a nurse) has retained her great haircutting skills and was willing to come help me out right when I needed it. Even though it turned out really cute and everyone was giving me such nice feedback...it was a bit tricky to adjust to at first and it all felt very bittersweet.

Then the boys decided to jump in with a big show of support. Aidan started it off, Zack quickly joined him, and then Eli cut off a ton of hair so that we were all in on it together.

There was a lot of laughing and the mood was very festive. 

What a difference it made on this day.

And what a lucky mom I am.

My own little rockband!

❤️

The Timeline

I keep replaying the timeline over and over again. It's all so vivid and such a blur all at the same time. I find the need to recount it, much like a birth story.

In late August 2019, my right shoulder began to cause me pain. I remember that I'd lost enough mobility in it that I had a hard time shaking a guest's hand at an event we hosted. I chalked it up to straining it while riding a Solex with Han, Zack, & Isabel on a beautiful day on the Dutch island of Texel.

After returning home from my summer in Holland I went into see my primary doctor in hopes of getting some pain relief. She affirmed that it was most likely a tear or strain and the only thing to do was to wait it out and let it heal on its own. I saw a chiropractor and had a couple massages until I returned to Holland for the month of January where Han had arranged for four physical therapist appointments for me. They also thought it was a "frozen shoulder"  and reassured me that it wasn't uncommon for it to take over a year to heal. They did try their best to work with me but were surprised at the lack of improvement in my range of motion. I was a very challenging case for them, which in hindsight should've been a big clue. 

When I returned home, I kept trying to ignore the pain which seemed to fluctuate in its intensity. Finally, it got bad enough that I thought I'd better go in and at least beg for a cortisone shot to help me wait it out. I have a high deductible so hated to go in at all--especially if there was nothing they could do. 

March 9th: Right as the whole Corona Virus was hitting the news and Washington State, I went in and met with Dr. Jordan Chun, a sport's medicine specialist. Little did I know he would turn out to be my guardian angel. He was instantly bothered by my lack of range of motion. He suspected it was a worse tear than I knew and that I'd need surgery to see a real improvement. I told him I was leaving for Holland on the 30th, so had a limited window of time. We had a fun time talking about my life there and he was all for getting things going quickly. He managed to get me in for an MRI just a few days later (which was remarkable and only due to the fact that thanks to the virus most procedures were being cancelled). 

March 12th: MRI. I almost cancelled. Worried it would show nothing and that I was going to have to pay so much of my deductible just to be told that only time would heal. 

March 15th: I had just gotten into my car when I got the call from Dr. Chun that will forever be frozen in my memory. They'd found a mass. It wasn't a matter of if it was bad. It was just a matter of how bad. I shook as I walked back into the house and told my mom. And as I called Han. And all four of the kids. It felt surreal and terrifying.

March 23rd: The governor ordered an unprecedented state wide "stay at home" order due to the Corona Virus. 

March 24th:  Met with an Orthopedic Oncologist who went over my MRI results with me. Action felt so much better than the days of purely waiting.

March 27th: Went in for Bone Scan and CT Scan on the same day. Had to drink a contrast solution for both. Ended up vomiting on the bone scan technician. It was a bit much all at once!

March 29th: The Universe called in back up at this point and Zack arrived to stay with us en route to start a new chapter of his life in San Francisco. We thought it would just be for a couple weeks. Ha. The timing felt miraculous.

March 30th: So painful to me to not be on that airplane to Holland after counting the days since I left in January.

April 2nd: Zack drove me into Seattle for a biopsy. They took 4 samples in two locations (my shoulder and lymph nodes in my chest). It felt like what you think of when they talk about fracking the earth.

April 4th: Got a phone call with my diagnosis: Diffuse Large B cell Lymphoma. The oncologist said that if I had to have cancer it was the best kind of cancer to have and one that is highly responsive to chemotherapy. They needed to do more tests to figure out what stage it was and what exactly my treatment would be. He was very reassuring but the fact that it was confirmed as cancer felt almost impossible to put my mind around.

April 7th: Blood tests and an Electrocardiogram to test my heart strength. Sat there in the hospital for an hour before they realized no one was working who could do my electrocardiogram. Had to return the next morning. This at a time when they were advising people not to go to the grocery store unnecessarily!

I had the whole waiting room to myself!

April 8th: Back to the hospital (Kaiser) in Bellevue for the electrocardiogram in the morning...followed by returning to Kaiser in Seattle, in the afternoon, to have a port put in. Like all my other appointments, no one could go in with me due to the virus. Zack drove me and waited in the car. This was my first ever surgical procedure and I felt like an alien in a foreign cold world: alone, naked, raw, vulnerable...trusting people I'd never met in basement of fluorescent lights and hard machinery. 

April 9th: PETscan. I was most nervous for this test. What would it find? But, I knew I needed it behind me so that I could begin treatment which I was so anxious to get going. Went in and the (really awful) receptionist said I wasn't on the schedule. They had made an error🤯. I managed to stay calm but we had to go home and return a couple hours later when they were able to get me in. My 5th time in the hospital in 3 days. In the middle of the pandemic. In the end, I was just relieved that they got me in the same day. But, still. 

I got a call that evening from the oncologist who said that the scan was mostly clear but one lymph node had lit up in my tummy area. Due to this, they concluded that I was at a Stage IV. But he reassured me that Stage IV Lymphoma isn't as bad as it sounds and that I had every reason to believe that it would be cured. The treatment plan would be 6 sessions of chemotherapy spaced out every three weeks. 6 isn't such a high number. Maybe it would be doable? Felt so relieved that it hadn't spread more than that, that it overrode my fear.

An hour later he called back and said they did see a spot on my breast and wanted me to go in the next day for a mammogram/ultrasound. This was one of my worst fears as I was behind in my mammograms and if they found something there, I knew I would feel like it was all my fault.

April 10th: Returned to hospital for the 6th time that week and the mammogram technician took real pity on me with my fresh port wound on one side and biopsy wounds on the other. She had the uneviable job of squishing my breasts into pancakes on that archaic machine. She said they wouldn't do an ultrasound unless they had to. They had to. I was so scared and sure that it was going to be bad news. Especially, as she got the tape measure out and measured an area that was showing up. The good news was that the radiologist was onsite and he would let me know before I left. He came in and reported that he was not concerned. There were some dense tissue there that are not uncommon and nothing to worry about. This is the first time I cried at any of the appointments.

April 13th: Zack was able to join me for the first time for my "chemo teach" appointment to learn about what to expect during the chemo process. They knew it was too much information to take in for one pair of ears. Since I'd had an up close view with Mom's chemo, there wasn't much new information. The biggest piece of upsetting news was that I should expect to lose my hair...which the nurse shared without missing a beat before telling me to make sure and wear sunscreen when I went out as the head will get sunburned very quickly. As if this was just normal, bullet list type info to keep in mind. Everything continued to feel utterly unreal. As if it must be happening to someone else.

April 17th: 1st Chemotherapy Infusion. Felt very brave, as I went in by myself. It was a beautiful day. I had my own private room with the same nurse mom had for her immunotherapy they day before (!). I was there for 7 hours (with the infusion taking 5). They will go faster after that first one. I slept during most of it. 

I was grateful for the big windows and that I could see Mt. Rainer. I was grateful it didn't hurt when she accessed my port. I was grateful to be starting treatment rather than investigating what needed to be done. Most of all, I was grateful that now I was one step closer to finishing it. 

A special gift Zack gave me right before I went in.❤️

No wonder I need to write all of this down to process it. I started 2020 with a month in Holland. Upon returning in late January, I (unexpectedly) never went "home" again but moved directly in with my mother to be there with her as much as I could (and spent every spare minute packing that house up to move). Up until the afternoon of March 15th, I was a healthy person, with an injured arm. How could it be that one month later, on April 17th, I was beginning my first round of chemo? I was supposed to be spending the month of April back in Holland, taking my mom to see the tulips. Zack had even planned to meet us there during his two week break between moves. I am still trying to put my mind around every bit of this. 

No way around, only through.

❤️

Where to begin?

I feel compelled to write and share during this time for myself...and anyone else who might be interested. I've decided to start this blog as a tool to help me process and to have one place to share updates as I go. The trick is getting going. This is one of those times when the waves are hitting so fast and hard it’s hard to come up for breath enough to know where to even begin. 

In October, in the midst of the beautiful trip Han & I took around the NW, we were simultaneously finding out that my mom had been diagnosed with Stage 4 Lung Cancer. In the midst of so much beauty...we were feeling such extreme mixtures of emotions. Supporting her during this difficult time became the top priority. 

At that point, we made the decision that I would move in with her...to help out and to enjoy our precious time together. After one more trip to Holland in January, I came home and got busy doing that. In the midst of this, I decided to go to the doctor to have him look at what I thought was a “frozen shoulder” that I’d had for months. He sent me for an MRI. One test led to another and, incomprehensibly, I have been diagnosed with Diffused Large Cell Lymphoma (a type of blood cancer). It is hopeful that it is completely curable. And for sure, it is completely scary!

This has all happened very fast. Last week I had a port put in and I start chemo on Friday. To have this all happen at once, in the midst of this pandemic has felt nothing short of surreal. My mom, Zack, and I were all supposed to be in Holland right now for a really special Spring trip. It is so difficult to put our minds around being slammed by these crazy waves we didn’t see coming. 

In some ways this feels like the worst possible timing. In other ways, there are some silver linings to it, the biggest being that we’re here together and Zack is able to be here with us, too. As timing would have it, he’s between lives (moving from Billings to San Francisco) but on leave until the “shelter in place” policy is lifted. It’s hard to imagine what we would do without his help right now, when friends and family can’t come over as they would any other time.

I’m also grateful for all the inner tools I’ve been cultivating over these last years. I heard a talk recently, that in times of crisis you get to see if your house is built on sand or a solid foundation. I’ve worked deligently in these last years to build that solid foundation and although I’m scared and overwhelmed....I can feel it there and trust that it will hold me steady. The biggest comfort is my total trust in the old Pema quote, I've shared with so many of you, “You are the sky. Everything else-it’s just the weather.” After stormy skies....the sun always follows. It is nature’s way and I have total faith in that.

~~~~~
I know this is a crazy time for everybody reading this. Wishing for each of you to stay safe and healthy. I can’t wait until we’re all on the other side of this surreal time. We will have so much celebrating to do!