The Pivot

Alternate Reality: The first capture of a woman impacted by chemo on sofa. Reality: Flaming June, Frederick Leighton, Oil on Canvas, 1865

I know it’s maybe been a little longer than usual to write an update, but as the last few weeks have gone, I haven’t necessarily had the words.  There is some amazing news, and it didn’t come without some challenges along the way. My hope and resiliencies are not diminished, but these last few weeks have certainly schooled me on who's boss, and it's not me.

I do however have the best news!! I am just over halfway through chemo treatments, 5 cycles of 8 (or 10 infusions of 16).  We performed an MRI, and I had booked appointments for two different surgeons in SF, and they also wanted a CT scan.  Here’s what we learned regarding the tumor and a high five from the oncologist!

·      We have reduced the metabolic activity of the tumor by 50% or seen as the cancer tumor cells don’t exhibit life.  (SUV Max from 12.9 to now 6.4 or 50% reduction).

·      The size of the tumor has reduced by 19% (10.4 x 7.2 x 9.0 to now 8.4 x 5.8 x 7.4 cm)

·      Two key lymph nodes were significantly enlarged, and they are not exhibiting signs of cancer any longer.

Summary: I am exhibiting a great and effective response to chemo, and according to the surgeon in SF, I qualify for a resection surgery of the liver to remove the tumor!!!!  Remarkable!

Expected questions that follow, we are sorting out the details, and we just don’t know yet. The surgeons, oncologists and tumor board are establishing upcoming planning appointments

·      Surgery date is yet to be determined,

·      Will I finish chemo?

·      What does the care and recovery look like?

·      What help do I and will I need?

·      What will be the treatment be like following surgery?

 …I don’t yet know, but in the coming couple weeks it will all come together. Some additional consults and appointments are underway to sort out the details.

There are a lot of health factors, including newly identified risk factors to weigh and balance carefully.  I am just as anxious to offer this ‘tumor thing, liver monster’ its royal eviction notice with sturdy boots, but also make sure all factors are weighed carefully for the very best outcome.  It's also important to feel strong and healthy going into such a big surgery that will claim 40% of my liver, which the body is so resilient, but will be tasked with regenerating itself during the healing process.

I am incredibly grateful for this news, as this is the best trajectory and option that could be hoped for!

The CT Scan

With some advance planning, I was able to make two different surgeon’s appointments, within a day of each other in San Francisco as a mid-way through chemo check-in plan.  I felt strongly about surgeon shopping and finding a surgeon that is willing to go after getting this tumor out of there!  If we shop for mechanics and contractors, it is quite reasonable to pursue the same when it comes to your health!

As much as I had already had a mid-chemo MRI scan, the surgeons wanted a CT scan.  It came with pursing insurance approval, getting the scan scheduled, and then even rescheduled so the results would be back in time for those surgeons appointments, and this was hours of phone time, coordination and travel bookings to travel for those appointments.

It was a Wednesday evening I had the CT scan. I went and visited my brother Chris after the scan as it was maybe just 15 min away from the scan location.  He was preparing for an annual guys camping trip and some of the guys were around to visit too.  I had a great visit for a short bit, as I wanted to exhibit how well I was doing, but also didn’t want to stay too long, as I had just chemo the day before, add an immune boosting injection, plus the contrast they inject you with for the CT scan. I fumbled that plan in a royal pain in the *ss way only a sister could manage!

I was a walking chemical cocktail, and not the kind I prefer that comes with olives, and didn’t want to wait around for feeling that way!  I knew it was a matter of time the side effects come in like a rising tide so I best scoot home and get a good night’s sleep.  However, in getting ready to leave, I missed about 6 calls all from the same number in the span of an hour, and they left me a voicemail each time…each with increasing urgency and detail. 

The scan even though was focused on my liver and belly area, it caught the lower part of my lung and had caught a Pulmonary Embolism, and I was being instructed to get to the ER right away to check it out further.  I was completely without symptoms, but not something to shrug off.  I was still just 15 min from the hospital and grateful I hadn’t yet ventured all the way home. Yet, I felt fine. 

Dani thankfully with good foresight, packed me a set of sweats, a cozy blanket and shoes as she reminded me ER’s were not the coziest places to be.  I had thought I was just going for the scan that afternoon and going back home. Chris took me to the ER while he also had a houseful of his camp fellas, nothing like a sister to put a wrinkle in the plans. He waited with me till the doctor met with me and thankfully they took me to the back after a very short visit even amongst a very full waiting room. The doctor spelled out that the majority of the night would be just spent waiting for get yet another CT scan to inspect this finding more carefully for next steps. I spent the night in ER, but was as cozy as one could hope, and got at least a few hours of snooze while waiting for another CT scan of just my lungs (pulmonary) this time, and to verify how best to treat it. Would it be surgery, or something more invasive to break up clots? Thankfully what turned out, was putting me on a double dose of blood thinners for 7 days, then down to a regular maintenance dose for which I will remain.   I discovered blood clots can be a risk factor with chemo, as it makes your blood ‘sticky’, and will need to be managed carefully for surgery.  Balancing clotting factors, along with the impact of thinning your blood.  The clots I have are thankfully small and were caught before complete blood flow was stopped to the areas of the lung they are located.  Nothing short of a miracle and I am tremendously grateful for the lucky find, while trepidatious of the risk factors you don’t know are there until they emerge.

What Now?

A little bit of a holding pattern. While I have taken a few weeks off chemo, a lot of changes of direction are underway and my entire medical care team are pivoting, coordinating and planning. My last session of chemo was Aug 18^th, and I had last met with my oncologist that week before all this unfolding and had elected to take a few weeks off treatment to resume in September so I can attend a family event and be more physically capable to attend and enjoy the occasion.  I am not certain I shared with my oncologist that I was having surgeons review my case mid-way through chemo. I definitely was aiming for getting surgeons input and case aligned with the possibility, didn't know the possibility would be so strong!

I have an oncology appointment coming up, and this will be the first step of many as to what happens next, treatment input, surgery planning, and even whether I go back to chemo.  Potentially just 6 infusions left and surgery by the end of the year!

Fun But In More Limited Capacities

In mid-August, I was able to go to the fair! It was Thursday morning, early and cooler than it had been, and not crowded! Chris and Dani took the day off, and a friend met up with us, for about a two-hour window planned carefully as I knew the post chemo from Tuesday woozies would come in Thursdays like they do, and the ability to be up and out would be quickly diminished.  The traffic was unexpectedly long which worried me quickly for the limited time we had.  I certainly made it though, and the priority was seeing the horses, going on the Ferris wheel, and having a corn dog, and annual fair tradition that goes back as far as I can remember. 

I made it to San Francisco, and stayed at a Hilton downtown for those surgeons appointments.  I wouldn’t have made it without my friend Jake driving the whole journey to the city and all the way back. He was my chauffeur and concierge beyond what I could have asked for.

While in San Francisco we had a mini-culinary tour and took in the city in a limited but as full a way as possible. My friend and cheauffer Jake, and local friend Amy and I had been able to go to Charmaines in SF, and have a beautiful city view, good bites, and have a small culinary tour as we had a more full dinner at a nearby Vientnamese restaurant Bodega. In the morning, we had an emerging local trend of delishous Turkish coffee at Adan cafe. Did I mention, my appetite has not been as diminished? :)

I was also able to have lunch with my colleague and scientist friend that has been so kind to share his journey with this same cancer. He is doing very well and in his recovery from liver resection and is bravely taking on international travel again soon.

I also went to a friend’s backyard wedding last week.  They made a simple, but beautiful occasion of their wedding, a beautiful couple and a great gathering of their friends and family!

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My outings are certainly more limited, as it’s been about balancing capability with wanting to be myself as much as possible, positive and present before I turn into a needy puddle. I avoid crowded places, and don't always offer the hug or handshake with social norms as I am still considered immune compromised. The world can become less clear, and my ability to self-manage and basic senses of coordination has diminished quickly or under strain, and that strain is sometimes that's just walking into a building.  Who would have thought?

I know I have blundered along the way, as I am certainly not my usual self and capacity, but continue to do my best.  For now, I will navigate the increasing impacts of this process and actively plan to be to be as strong as possible for surgery and recovery.

Your encouragement, hope and prayers will continue to be instrumental in the success of this next chapter!  Thank you!