There is really nothing that can prepare you for a cancer diagnosis. It is a shocking and momentary devastation that is overwhelming on so many different levels -- physically, emotionally and spiritually. But perhaps the greatest challenge is identifying the immediate logistical next steps of what a diagnosis means while you are trying to process these levels.
Below is a "best of the best" advice that I both learned through experience and received from others during those first few weeks of my cancer diagnosis that I found to be helpful to my personal journey (realizing that for everyone it is different).
1. It's okay to freak out.
Yes, this is a big deal. You could die.
Yes, this is a big deal. You could die.
2. You probably won't die.
Or at least you don't have enough information to know yet. Many cancers are very treatable, so honor the initial freak out and start arming yourself with some information to empower your journey.
Or at least you don't have enough information to know yet. Many cancers are very treatable, so honor the initial freak out and start arming yourself with some information to empower your journey.
3. Find a team you trust.
The number one recommendation that I wish someone told me was to meet with an oncologist first (vs. a surgeon). An oncologist will talk you through the type of cancer you have and provide a recommendation of a treatment plan and ideally a recommendation of a surgeon he or she trusts. An oncologist is likely to provide more of a holistic and emotional understanding of the disease, whereas some surgeons (although not all) tend to be more straightforward and direct in their approach.
The number one recommendation that I wish someone told me was to meet with an oncologist first (vs. a surgeon). An oncologist will talk you through the type of cancer you have and provide a recommendation of a treatment plan and ideally a recommendation of a surgeon he or she trusts. An oncologist is likely to provide more of a holistic and emotional understanding of the disease, whereas some surgeons (although not all) tend to be more straightforward and direct in their approach.
For my family and me, this direct approach from a surgeon as our first consultation was too shocking and harsh. In hindsight, perhaps it was simply because it was our first meeting and denial was met head on with reality. I ultimately ended up at MD Anderson with the same treatment plan as that the first surgeon we met with prescribed, but the approach was so much different.
NOTE: If you choose to go an alternative path, I still recommend hearing both sides of Western and Eastern approaches. I always thought that if I were to ever get cancer, I would go the alternative route. But as soon as I heard how treatable my breast cancer was and the science to support it, I chose that path but had a very comprehensive complementary approach alongside (meditation, acupuncture, diet, exercise, etc.).
4. Get a second opinion.
This was the last thing I wanted to do, but my family really encouraged. I just wanted to find my medical team and get the tumor out of me. But it really is a good idea to get a second opinion -- ideally from a center of excellence. It's likely they will validate the initial recommendation you heard, but they could have an approach, insight or other information that could be helpful. Ultimately it is your decision.
This was the last thing I wanted to do, but my family really encouraged. I just wanted to find my medical team and get the tumor out of me. But it really is a good idea to get a second opinion -- ideally from a center of excellence. It's likely they will validate the initial recommendation you heard, but they could have an approach, insight or other information that could be helpful. Ultimately it is your decision.
5. This really is the worst time.
Or at least the most overwhelming time, with all the appointments; understanding insurance coverage; sharing with friends and family, etc. Everyone told me that I would feel so much better when I had a plan in place. And they were right. What I wasn't prepared for is that the plan could take up to three to six weeks to have in place. Assuming you don't need immediate surgery or treatment, have patience and know that you will feel some peace soon.
Or at least the most overwhelming time, with all the appointments; understanding insurance coverage; sharing with friends and family, etc. Everyone told me that I would feel so much better when I had a plan in place. And they were right. What I wasn't prepared for is that the plan could take up to three to six weeks to have in place. Assuming you don't need immediate surgery or treatment, have patience and know that you will feel some peace soon.
6. Suck it up and let people help.
Whether you choose to be very public in sharing your diagnosis as I was, or private, people are going to want to help and you are going to need it. For most of my life, I was convinced I could do everything on my own, so I saw this as my opportunity to let go and embrace the support surrounding me. As family and friends can attest, I got very good at asking for help and articulating my needs very quickly. (We are now working on boundaries.) Be specific and think about things that would be helpful (grocery runs, play dates for your kids, flowers, meal drop off, etc).
Whether you choose to be very public in sharing your diagnosis as I was, or private, people are going to want to help and you are going to need it. For most of my life, I was convinced I could do everything on my own, so I saw this as my opportunity to let go and embrace the support surrounding me. As family and friends can attest, I got very good at asking for help and articulating my needs very quickly. (We are now working on boundaries.) Be specific and think about things that would be helpful (grocery runs, play dates for your kids, flowers, meal drop off, etc).
7. Stay off the Internet.
One of the best pieces of advice I got was to have a friend and family member do the Internet research for you. At the end of the day, you should be relying on your medical team to advise you, but it is too tempting to not get online. Having said that, there is some really f*#@ed up stuff out there, and this is the last thing you need to be dealing with. My mom became my Internet-research guru. Granted at times I had to advise her to step away from the computer, but she really became the go to source for distilling the information that would be helpful for me.
One of the best pieces of advice I got was to have a friend and family member do the Internet research for you. At the end of the day, you should be relying on your medical team to advise you, but it is too tempting to not get online. Having said that, there is some really f*#@ed up stuff out there, and this is the last thing you need to be dealing with. My mom became my Internet-research guru. Granted at times I had to advise her to step away from the computer, but she really became the go to source for distilling the information that would be helpful for me.
8. Be prepared.
I come from a very strategically minded family, so we were beyond prepared with key questions for each appointment. Contrary to the above, this is the time to get on the Internet with searches that are very specific (questions to ask my oncologist about breast-cancer treatment). There are some great resources out there.
I come from a very strategically minded family, so we were beyond prepared with key questions for each appointment. Contrary to the above, this is the time to get on the Internet with searches that are very specific (questions to ask my oncologist about breast-cancer treatment). There are some great resources out there.
9. Celebrate, or at least go to a silly movie.
For me, it was important that I celebrate the milestones. Before my bilateral mastectomy, my friends threw me a "bye-bye boobs brunch." We had a "chemo kick-off" party the evening before chemo. While they were all important milestones, they were more distractions that plucked me out of the intensity of the time with some good food, friends, family and laughter.
For me, it was important that I celebrate the milestones. Before my bilateral mastectomy, my friends threw me a "bye-bye boobs brunch." We had a "chemo kick-off" party the evening before chemo. While they were all important milestones, they were more distractions that plucked me out of the intensity of the time with some good food, friends, family and laughter.
10. It's gonna be a rough year. But then it is over.
This was perhaps the most important piece of insight I gained from several friends, that I am only now just coming to appreciate. I remember when my doctor. told me it would be a year of surgeries and treatment, I was devastated and could not even imagine a year of feeling this uncertain, sick and scared. And they were right, it was a really shitty year (the better I start to feel, the more I realize how difficult it was).
This was perhaps the most important piece of insight I gained from several friends, that I am only now just coming to appreciate. I remember when my doctor. told me it would be a year of surgeries and treatment, I was devastated and could not even imagine a year of feeling this uncertain, sick and scared. And they were right, it was a really shitty year (the better I start to feel, the more I realize how difficult it was).
But now, as I am re-emerging on the other side with newness all around me (new hair, new perspective, new possibilities), I can see it as the most transformative and healing year of my life. I also realize how fortunate I an that it was just a year, which is not always the case. Sure I will always be living in a post-cancer world, but for the most part, this phase is over.
And like these tips of diagnosis, I am realizing that the lessons learned over this past year are not so much about cancer, as they are about life.
No comments:
Post a Comment