Wednesday, August 30, 2017

Thanks for Your Help...Ok, Really, No.

I sure do have lots of loving, helpful friends. And even though I have cautioned about offering unsolicited advice to cancer warriors, I've been inundated lately.
  • One friend wants me to look into one therapy that they use for blood and lymph cancers. 
  • Another wants me to call the a major clinic right now, because their new surgery/therapy combination is doing wonders for somebody they know. 
  • Another has me heading to the medical marijuana clinic. (That's actually probably the most helpful right now and I am grateful for recommendations there. I think the state of medical marijuana is deplorable; I will welcome it into the fold of science-based medicine soon and divorced from the hokum we see now.)

Folks, I know you love me. You want me to "beat" this cancer. You want me to be cured.  I get that. Even though I have explained in detail what my situation really is, it went by you because you aren't the one living it. You don't know from solid vs blood tumors, you don't understand hormone status, Human Epidural Growth Receptor 2 status....everything that my doctor and I track in detail. I understand that I've written all of this in a way that's hard to absorb. So, you hear of people being cured and you want me to share the joy.

Here's the bad news: Cancer's a sneaky little bitch and it is different in all of us. All of these miracle cures and advances that you read about aren't necessarily going to apply to the people you know who have cancer.

  • Some cancer makes solid, hard tumors, like mine. Others affect blood or lymph cells or make less palpable tumors. Treatments for each are wildly different.
  • Stages of cancer determine whether you're getting surgery. I'm stage IV, metastatic. There's the same primary cancer in bones all over, in my skin and now God knows where else. That means no surgery because I'm basically riddled with cancer. What to do surgery on? Everything?
  • The same goes for radiation, although I will consult my radiation oncologist just in case...but he's going to say "not unless you have pain." I don't have pain. 
  • I have the extra joy of managing the other primary cancers, especially my thyroid cancer, and there is preliminary evidence that the treatment for it may be making my uphill climb impossible.
What may be worse is how strident some folks get with me when I resist their wisdom. No, you can't pay for my cure. There isn't one. You can't help me find my miracle -- it's not out there. There's treatment, and I'm using my resources and a pretty keen ability to judge to decide my treatment plan. But the treatment plan will be rooted in the exhaustive research they've done to figure out what works for my particulars. 

Let me be clear: the person in whom I invest the greatest trust in judgement is me. I get everything the doctors are talking about, sometimes right down to the molecular level. My data gathering is clear eyed and thorough. I will make the best decisions based on a narrowing set of choices. My doctors and I -- we have what we need. I will reach out to more just to be sure on my own. You really can't help me. You can't save me. Only I and the doctors can do that, if it's possible at all. 

So back off.

And here's something I can't say enough: At Stage IV, I'm never going to beat this cancer. I will not be cured. I intend to tame it into a state we call NED: No Evidence of Disease. But I will never live another moment free of cancer treatment. I still may live for years, but I will always be Stage IV.


Sadly, the TDM-1 failed on nearly every count. Skin mets are worse, tumors are worse, my bones are worse. The doctor is signing me up for a clinical trial next.  I will keep you updated.

Saturday, August 19, 2017

Cruising and Navigating -- How to Travel with Cancer!

Well, travelers, here I am, back from Europe. I did it! I managed to manage my symptoms, garner enough energy and enthusiasm to really, truly enjoy my trip of a lifetime. As you might guess, it wasn’t a walk in the park. In fact, sometimes park-walking was a bit more challenging than it used to be.
A view of the mountainsides and vineyard slopes clinging to the side of the Rhine Valley, as seen from the deck of my cruise ship.
The beautiful RheinTal from the sundeck of the Viking LOFN.

The last time I posted, I noted that the new regimen, TDM-1 or Kadcyla, was having a odd effect on me. My immune system seemed to rally against it, and I had fevers and bone pain and low, low energy.

First round, it was a few days in a row. Second, more like two weeks. Now, it just is. I have to be on guard that my system will attack the TDM-1 all the time. My energy is significantly impaired.  Dealing with this on the cruise meant some adjustments and some innovation.

The day we left for Amsterdam, I felt only the usual “operating in jello” feeling. Herceptin users might be familiar with that feeling: Your energy is on constant drain, like a battery that runs out too soon. Frequent naps and lower expectations help.  I could feel some pain, and took Tylenol liberally. But it wasn’t long before the fevers showed up – yes, on board ship – and I had to do something, or I was going to be watching the Lorelei from my bed. When these fevers get going, no amount of Tylenol ropes them back in, so I had to act.

I opened my Felix medical bag of tricks, and I pulled out a dexamethasone.  These were left-over from my allergic reaction to the Taxanes, but it did wonders. For the rest of the trip, I carefully managed taking on board (my body) just enough steroids to fight off the long bone pain flu-like symptoms. It didn’t give me much more energy, but it did allow me to enjoy the amazing food and drink in greater quantity.  And, Voila! -- as the Alsatians say -- I had a cruise after all.

Because of this, I was able to truly enjoy the best parts of the cruise. If you’ve never sailed the RheinTal (the Rhine Valley), it’s an unbelievable site: castles, vineyards, scenic villages, kilometer after kilometer. I was able to get out and see the castles and ruins, the quaint towns and countryside, and the beautiful Black Forest. We are slowly posting the experience on

We even took a small hike. Yes, it was hard, but it felt sort of like normal us – we always loved hiking, and that day was a good one. Surely, a small hike wouldn’t kill us! Well, ok, we were 10 minutes behind everyone else on a 20 minute hike, but we made it most of the way. It felt like us, more than watching cuckoo clocks and glass blowing. Hiking.

My feet in a stream, taken two years ago, to remind me that I have to craft new experiences now.
Reminder to make your experience as you can.
Two years ago, I posted on an old travel blog that I was in tears. We had tried to hike to a spot we’d hiked several times before; it’s a lovely spot known as Alberta Falls in Rocky Mountain National Park.

I couldn’t make it. I couldn’t manage just the little bit more to go to get to the falls. I realized that this was my new normal (even before my Stage IV diagnosis).  It was difficult to accept. I took a photograph of my feet in Alberta Fall’s clear stream, to remind myself that this was a different, and new, experience.  That was my new life; the one I navigate now. I would have to find the amazing experience that I can navigate. So it was with this trip. There were no tears, really. In fact, I’m proud that I figured out how to make joy out of jello.  

My tips for traveling health-challenged:

  1. River cruising is great. They spoil you. They wait on you hand and foot. There are many fewer passengers, so personal attention is easier.  This personal attention may help when you need more water, or you need your room fixed up due to a problem. The Viking River Cruise staff were the best.
  2. Keep ambitions low. We often had a choice of activities; we usually stuck with the main provided activity or one even less ambitious. My traveling companions (my sister and her hubby) were great at helping us craft our own. For instance, the cruise offered a three-hour walking tour of a major cathedral, a chance to drink special beer made only in that town, and dinner in town with shuttle buses back.
    We opted for: a shuttle bus to town. We made our own tour of the (amazing) cathedral, at our pace. We crafted our own visit to a local K├Âlsch brewery, and we all made an extended visit to a coffee shop (water closets are hard to find), where we had a completely different experience than anyone else. We sat, watching bridal parties walk up the street in full regalia to take photos at their cathedral. Not marry, mind you, just take pictures. We would never have seen that on the tour.
  3. Nap every day. Nearly all of our schedules began in the morning. By opting out of the cheese-making or other extra tours, we preserved energy for a small walk in town later.  Again, this was probably a more authentic way to experience the world, and more doable for me.  Or we’d be in better shape to enjoy the themed meal and even a little wine.
  4. Think about food and drink. I actually ate pretty much everything, from local sausage to Flammkuchen, and I was relatively liberal drinking the local wine and a few cocktails. I trained the waitstaff from the beginning not to worry about me finishing my food. But there is no doubt that I ate less than normal, and yes, I’m still losing weight.
  5. On the plane: Have drugs. Our eight hour flights were pretty decent, overall. They handed out (pretty useless) earplugs, masks and they had lots of entertainment. But it was still difficult and painful for us both. I had lots of Tylenol and prescription sleep aids. On the way back, they proved critical; that pain was getting pretty tough. If I hadn’t taken the right drug, I might have been in tears. Hubby just kept playing Texas Hold ‘Em and winning the plane. We survived.

Health Update

I have had some news since I’ve returned. The doctor was concerned about the constant flu symptoms, so she is sending me to the infectious disease doctors, just in case. We’ve checked nearly everything for hidden infection, and I really don’t think that is the issue.  I think my body believes that Kadcyla is the infection and is battling it mightily. Dammit.

That may explain why it doesn’t appear to be working. My latest CT scan says that we are seeing regression on my chest wall in particular. Tumors are back. Thickening is seen.

The rest of the scan seems ok: lungs stable, liver stable, bones...probably stable. My doctor told me that she’s ordering a PET scan again, meaning she wants to look at the bones more carefully. She expects to change my regimen.

What comes next?  Who knows? When I met with her we discussed a clinical trial. That’s sort of a big step; entering into the clinical trials world means walking further down the path of treatment for Stage IVs. She mentioned radiation on my chest – I am a big fan of that idea. I fully believe that if we don’t get my chest wall under control, I have no hope for the rest. I trust my gut on this – time to get this area locked down again.

So the news is exactly what I expected. I could see my chest for myself, for instance, and there was no other really bad news. I was hoping the bones would not look worse and it appears they don’t, at first glance. Maybe we can get a better look now with PET.  And my lungs and liver are stable. I guess that’s all I can ask for now.

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