A field guide for men who are supporting their wife or significant other in becoming free of cancer. I outline the process and experiences, and offer tips and hints for others. My dear wife, Meagan, has been diagnosed with and is undergoing treatment for Stage 4 melanoma cancer.
true, the brain MRI was only for the National Cancer Institute assessment we have on Thursday. It’s part of their protocol because they want you scanned from head to toe. And some of their clinical trials exclude you if you have a brain tumor. Meagan had one brain MRI early on, and Kaplan told her, “your smarts are all there”, and no evidence of tumors then. But that was then and this is now. We know the cancer has spread throughout her body. I know that melanoma likes to go to the brain after the lungs. So while there are no symptomatic reasons to be concerned, it is a scan, there is a possibility there is something there, and the repercussions would be epic. I hate this job.
I mean, I wouldn’t want anyone else to do it. But the uncertainty and having to be ready is really hard. I know there are effective treatments for brain tumors (gamma knife surgery, which is targeted radiation). But it would still be very challenging news and cabana boy would be working double overtime to handle the fall-out. At least we will be hearing the news from our oncologist. And we are headed to Bethesda for the best treatment possible, irrespective of where her melanoma is landing.
No matter if the government shuts down or not we are going to Bethesda - they will see us. That is a load off my mind! Now we can get on with the dance and find a clinical trial that is appropriate!
Brain MRI today, results due Monday at our visit with our oncologist - the NCI required one because there are some trials you can’t be on if you have a brain tumor. We didn’t really want to do this - would rather have waited until something presented itself symptomatically. So we do have stress over the weekend until we hear. And we want to hear from our oncologist rather than the NCI people.
At least by Monday afternoon we’ll know, and will be ready to fly back Wednesday with all the scan CDs and reports in hand from head to toe.
“As far as the shutdown: Things are changing hourly. The last we heard was that the Clinics will be closed and we will not see new patients during the shutdown. We will likely start seeing patient immediately once the government reopens. If you would like to delay your visit until we get word that the government is reopening we can accommodate that. Please be aware that there will be no one in the office during the shutdown and we are legally prohibited from checking our work emails during the shutdown. We are expecting to have a meeting with Dr. Rosenberg later today to get more information about how we will be affected and I will pass on any information that I can.”
All the logistics are set for us to go to Bethesda next week. Got the package from the National Cancer Institute (NCI). Pathology slides Fed Ex’d yesterday, genetic blood tests faxed yesterday, brain MRI scheduled for tomorrow, and Monday we visit our oncologist (to review the results of the brain MRI) and pick up the CDs of all the CT, PET and MRI scans and linked reports to hand carry to her appointment. Check, check and double check. What could possibly go wrong?
We are now scheduled to head back to Bethesda and the National Cancer Institute (NCI) located within the National Institute of Health complex next week. Our appointment is Thursday morning at 8:30am until they are done, so we fly out Wednesday and back on Friday. We’ve got a lot on our plate here with Meagan’s dad’s health issues so no time to relax and make the trip fun. The NCI process is pretty interesting. Read on if you want the details.
Life goes on. As we continue on this cancer journey, characterized by its roller coaster ups and downs (hard) and duration (thankfully long) - we still have the kinds of things pop up in life which happen to others. And they are hard and stressful. So you have to build this reservoir of emotional strength to deal with those events as they arise, and we’ve got one on our hands now.
One of the biggest challenges we face aside from managing the disease directly is maintaining emotional equilibrium. We all (by we I mean all of in the nuclear family) support each other in various ways. It’s pretty clear Meagan relies on your truly, her cabana boy, for strong emotional support, along with incredible support from her posse of friends and family. As her pillow partner though, I often get questions that others don’t - especially in those times when she is feeling scared and vulnerable. Recently, one of the most difficult questions she asked was, “do you really believe I am going to make it?”.
There is nothing weirder than seeing your wife’s body rendered in transparent, skeletonized 3D and the oncologist using the mouse pad to turn it around so you can see it from different angles. Weirder still is seeing these little bright dots which represent tumors (boy, those tumors like sugar).
I picked up a book for Casey the other day that is quite popular lately in the business world. It’s been on the bestseller list for a while - called the 4-Hour Workweek by Tim Ferriss. I read through it quickly. It’s got a lot of very familiar management, time management, prioritization and motivational aspects he picked up from many of my favorite authors over the years. The unique spin is how he encourages people who have portable skills that need not be placed based to go virtual, outsource all aspects of your business or work you can, and become an virtual entrepreneur. Clearly not everyone can do this, although many professionals could, such as software developers, graphic designers, consultants, etc. But what about a cabana boy?
There is a lot of work which is place based and relationship based and is based on 1:1 direct, not virtual, communication. You cannot give a hug over the internet. A cabana boy’s job is pretty much 27x7x7. As much as I would like to outsource many aspects of it - I think it would be a tough sell to have a virtual assistant in India provide Meagan the emotional support she needs at various times. Maybe outsourcing the logistics of travel and accommodations if we are regular visitors to Bethesda. But not the hugs.