Updated: June 11, 2023
Note: At some point I'll figure out how to make this list easier to navigate. Right now, everything is on the same page unless otherwise linked.
The healthcare ecosystem in the US is vast, decentralized, and overwhelmingly complex. Until there is evidence of political and organizational will to make health care more patient-centered over profit-centered, we are left to our own devices to navigate this swamp.
As I meet awesome people and organizations on a mission to make the cancer journey less painful, I want to share some of the resources that I personally find helpful.
If you are on this journey with me - I hope this helps.
General Cancer Resources
The general cancer sites provide a nice way to get the lay of the land as you start your journey - particularly when you know you have "cancer," but aren't entirely certain of the specifics yet.
An excellent first stop providing a patient-centered overview of the cancer landscape. If surfing the site is overwhelming, they have an information helpline to help you navigate. They can also provide information regarding resources and where to go next for your specific cancer.
American Cancer Society Helpline - 800.227.2345
This organization is solely focused on helping people navigate the cancer journey.
They provide patient-centered education, resource navigation, and online support groups. Their webinars with researchers and oncologists have been informative and incredibly helpful as I began my journey.
Their CancerCare Hope Line provides free counseling and resource navigation support. For practical support for navigating the cancer journey, this is an incredible service.
CancerCare Hope Line - 800.813.HOPE (4673)
This site drills down into the experience of the cancer journey. ASCO also provides information on the latest cancer research, clinical trials, and what all this might mean for the patient. I personally read this site like a book. They keep the resources up to date.
The ASCO Educational Book contains recent research and presentations and is geared towards Oncologists. As a patient, I found it helpful to see where the research was heading.
Enter your specific cancer in the search bar to find the appropriate documentation.
Look at the dates to make sure you are getting the most recent information.
The National Comprehensive Cancer Network provides the clinical practice guidelines and patient-centered education to help us speak with our oncologist.
Insurance companies are also using this tool to determine what they will and won't pay for. Potentially good ammunition if you and the oncologist are having difficulty getting certain tests and treatments approved and covered.
Type your cancer's name in the search box.
The first item that appears is the NCCN Guidelines. The second item is often a patient webinar.
For those of us with rare, hard-to-treat cancers, or who are having a recurrence - clinical trials may be our best hope. I personally have not been in a clinical trial yet, but I suspect it won't be too long before I am.
This is the registry for clinical trials being held in the US. The current site can be challenging to navigate.
- Work with your oncologist to get clarity on which information from your record you will need to navigate the site and determine whether you are eligible for a clinical trial.
- Many specific cancer societies have Clinical Trials research helplines. If you are struggling to find a helpline for your specific cancer, try contacting the American Cancer Society helpline (800.227.2345). They may be able to point you in the right direction.
The Patient Story provides a great starting point for learning about the clinical trial experience, including stories from others who have participated in a clinical trial.
If you need to move for treatment, Joe's House can help you find lodging discounts, transportation, and other resources.
Ryan and I have picked up supplemental hospital indemnity insurance this year. This is the insurance that will help cover relocation expenses if we have to move for treatment. General medical insurance does not cover relocation expenses. I'll update this section if we use this benefit.
As I figured out the landscape, I began to drill down into the organizations and resources specific to my type of cancer.
Some cancers have better organized ecosystems than others. Your oncologist or the American Cancer Society helpline (800.227.2345) should be able to help you identify the specific organizations for your type of cancer.
I have found two that have helped me tremendously on this journey.
LLS has in-depth support resources for patients with blood cancer.
LLS also has a Clinical Trials Support Center that will answer any questions you may have about participating in and finding clinical trials.
LLS has put together a fantastic "Lymphoma Planner." This workbook will help you track all of the small details of your care, including long-term survivorship considerations.
The Lymphoma Research Foundation (LRF) provides grants and support for researchers and oncologists as well as support for lymphoma patients and their caregivers.
It is through their work that medication exists that allows me the quality and quantity of life I am currently experiencing.
The LRF helpline helps patients navigate their website and also points patients towards financial and peer support.
Lymphoma Research Foundation Helpline - 800.500.9976
LRF also provides an amazing Clinical Trials service that identifies clinical trials in your area that you may be eligible for. I used this service when I was first diagnosed. The clinical trials navigator was amazing.
Even though I wasn't eligible for anything currently recruiting at that time and wasn't in a position to go through the lengthy trial onboarding process, she provided recommendations for when I was ready (and healthy enough) to consider a clinical trial.
I highly recommend the LRF Clinical Trials service as part of your treatment decision-making if you have lymphoma.
Insurance, Disability and other Financial Considerations
If you require financial assistance - contact CancerCare's Hope Line (800.813.4673)
CancerCare has put together a resource guide containing guidance and an index of organizations that can help with the costs of cancer.
Dollar For is a non-profit that serves as an advocate for patients grappling with the crippling medical expenses of cancer care.
Unfortunately, I don't have any magic bullet or 5 sure-fire tips for navigating health care billing, insurance, and medical finances during major illness.
That said, here's what I've learned so far:
Engage a Patient Advocate or Case Manager STAT
Patient Advocates and Case Managers can help you navigate the bills and claims that result from hospitalization (for anything) and cancer treatment. I have found these folks invaluable for keeping me out of collections and for helping me make sense of bills that I don't recognize, thought I already paid, or can't reconcile.
- If you are on corporate insurance, ask your HR Benefits office whether they have engaged a 3rd party Patient Advocate service as part of their benefits package. Get to know them as part of your annual benefits transition.
- If you are a cancer patient, ask your insurance company about any case management services they may have. You may have a case manager automatically assigned upon diagnosis. Leverage them.
- If you are struggling to find someone to help you - the CancerCare Hope line might point you in the right direction. (800.813.4673)
Working with the insurance company
Some insurance companies are developing Case Management / Nurse Navigator programs for cancer patients and other people with severe chronic illness. These individuals are invaluable for helping you navigate all of the departments of the insurance company. Unfortunately, access to this service isn't consistent, even within the same insurance company. It depends on the program your employer has chosen.
Below are some of the things I've learned. However, our health care system is so complex and requires so much of the patient (who has next to no access to decent information, little control over the providers used in their treatment, and not much more control over the treatments recommended to them and whether they are covered), that there is zero guarantee that you won't wind up in financial trouble despite trying to do all the right things. Take this list with a healthy grain of salt.
- Sign up for their online claims portal. This provides visibility into what you are SUPPOSED to be paying (vs what the health care provider is billing you).
- Use this portal each time you get a bill. Drill down into details to see each of the tests, make sure what they are billing is the same as what you are obligated to pay according to the portal.
- Mark each time you pay a bill in the portal.
- Don't use the insurance portal "Pay Now" feature. Pay the bill directly, then mark it "Paid" in the portal. Your bill may wind up in collections before the provider sees the money - even if you paid it.
- If there is a discrepancy between my bill and what is in the portal, I talk to the insurance company first, then to the provider. If the insurance company is aware that there is an issue, my experience is that they are willing to step in to help.
- If you find that there is too much back and forth - talk to the insurance company (ideally your Case Manager if you have one through that insurance company) and INSIST that they get on the phone with the provider billing group with you on the phone. If they refuse, ask to speak to a manager. Keep going until you, the insurance company representative, and the provider billing team are on the same call.
- If you struggle to be assertive, have a friend who has no problem being a thorn in someone's side to be with you for moral support or to be your voice. If you are female, it helps if that friend is a deep-voiced male. (Sad but true.)
- Document, document, document each interaction in one place if you need to bring in legal help.
Working with health care provider billing teams
Some health care providers are notoriously aggressive about sending patient bills to collections well before their claim has made it through the insurance process.
Though there has been some improvement around how this activity impacts credit scores, and a LOT of improvement around surprise out-of-network billing for emergencies, there are still many loopholes.
Furthermore, the bill you receive will likely be organized very differently from the way they submitted the claim.
Find a friend who loves Excel and has extraordinary attention to detail. It helps.
I've learned a lot over the past year. However, take the list below with a grain of salt. There are too many variables and too little access to information to ensure that we (as patients) don't wind up paying a lot more than we expected to.
- If you are given a choice - work with the insurance company to find or confirm that your provider is in-network. Sadly, providers drop in and out of network, frequently mid plan year, and what may have been an in-network provider when you chose your insurance suddenly becomes an out-of-network provider. Many will notify their patients if they drop out of network, but you may not be in a position to do much about it. Missteps in provider selection can be THOUSANDS of dollars out of your pocket - so stay flexible if you can.
- Ask the provider office manager if they have any plans to drop out of network for your insurance that year. Better yet, ask about their preferred insurance when you are looking at benefits during benefits registration. Switching insurance companies mid-treatment is a pain, but when we are talking thousands of dollars, you do what you have to do.
- For planned hospitalizations, make sure that your request for in-network doctors ONLY is documented and honored. Honestly, it's financially safer right now to go through an ER due to the Balance Billing Act that went into effect January 1, 2022. I would love to see that extended to any treatment requiring hospital time - in- or out-patient.
- Sign up for the provider's billing portal and notifications. If they still don't have an automated billing portal, make sure you get each bill in writing, fully itemized, and document the date of when you receive the bill in the mail. This is extra-important with mail delivery becoming less reliable in many areas.
- Make sure you are clear which services they are billing and the name of the service they are using when submitting claims to your insurance company. If you can get a copy of what they actually sent to the insurance company, even better.
- Keep track of ALL billing conversations in writing. If you have an aggressive provider - this could help you if you need to pursue legal assistance.
- If you are running into even the tiniest difficulty with the provider billing team - engage a Patient Advocate or a Case Manager from your insurance company pronto.
- Document, document, document each interaction in one place if you need to bring in legal help.
Short- and Long-Term Disability
If you are working for an employer, you may have short- and long- term disability as part of your benefits package. Work with your HR department to get a better understanding of what is available to you and your rights regarding medical leave and keeping your job.
My employer's insurance company did a decent job of guiding me through the process of transitioning from short to long-term disability and the documentation they require to administer my case.
Just make sure you keep on top of any requested documentation, so you don't lose benefits.
Social Security Disability
If you have transitioned to Long-Term Disability, the disability provider will ask you to apply for Social Security Disability. Eligibility for Social Security Disability starts 6 months after diagnosis.
Ask if they have a law firm to help you through the process. My impression is that the big providers generally do - since that reduces the amount they have to pay out to you.
Most of the advice I found said that it was MUCH easier to get through the application process with a lawyer. The lawyers I worked with were very helpful and knew how to phrase a question to get the correct information out of me. The forms provided by the US Government are challenging to interpret. The lawyers also did ALL of the leg work and phone calls for evidence collection. Even if you don't have free access to a law firm, the cost of a Disability lawyer is currently capped to 25% of the back-pay or $7200, whichever is less.
The process often takes months and can be complicated. AARP.org has excellent advice on navigating Social Security claims - regardless of age.
If you are approved for Social Security Disability - the Social Security office will send you a check (either physical or directly into your bank account) for any back-pay from the time of eligibility. Do not spend that back-pay check until you get the final amount you need to return to the Long-Term Disability provider. The Long-Term Disability provider has been covering that gap between diagnosis and Social Security approval and will insist on that money back.
Once everything is settled up, I get 2 checks. One from Social Security and one from the Long-Term Disability provider making up the difference for what I am insured for.
My case for Disability was cut and dried. Yours may not be. The current list of qualifications for Cancer can be found on the Social Security Administration site.
A cancer diagnosis is a great time to get mental health support - even if you don't thing you "need it." A diagnosis is a traumatic event, and you deserve support.
I have collected a number of mental health resources that I have found helpful over the years. Cancer-specific resources are listed towards the bottom of the page.
Just because I'm sick doesn't mean I can't have hobbies.
That said, with lymphoma, my attention span has been trash. I also have good days and bad days of mental activity. Though my mental stamina has been improving over the past few months, writing and anything technical still takes longer than before. And some days, I'm only good for sitting on the couch and watching TV.
I wanted to focus on hobbies I could take with me to the hospital and cancer treatment. I need something better to do than stare at the electronic leash that is my phone and doomscroll.
Visual Art - I've been actively learning how to paint and draw. This is not a natural act for me. My impulse is to start writing when I have a pen in my hand. With writing being "unreliable" right now - and having an unfamiliar desire for color and texture - I am leaning into this hobby.
Skillshare has been an amazing resource and, particularly during the worst of my first line treatment, was a great distraction. Their tutorials provided a solid foundation for developing my art practice last year.
Crochet - I learned to crochet 10+ years ago using YouTube videos and my Mom. I abandoned the hobby when my career got crazy-busy. This is the hobby I pick up when I have enough mental energy to count, but not enough mental energy to paint. Painting and drawing are still new to me and can be stressful. Crochet is an old hobby, so I don't have to spend so much energy on it. Crochet also serves as a bonding mechanism with my mother.
Other activities - Supporting my physical health has to be first priority.
- I write when I have the focus and energy because that is an important means of expression for me.
- I cook because that supports my physical health and I enjoy doing it (most of the time).
- I have had a perfume collection for 15+ years and have started leaning back into this hobby. Last year made me appreciate my sense of smell and the concentration required to pick out notes and discern what makes me like or dislike a fragrance. Scent exercises other parts of my brain. I currently participate in the Basenotes community (I'm Sakecat). Checking in every morning and translating what I'm smelling into words has done wonders for my ability to focus.
- I play with a Cricut machine because one of my former bosses thought I needed something to do. It also allowed me to put together fun gifts for my support network to thank them. I intend to give this machine back to her in the very near future.
- I play video games when I feel I have decent manual dexterity. Right now, I'm doing another Stardew Valley playthrough. Guild Wars 2 is also in rotation when I am feeling exceptionally sharp with my reaction speed and mouse dexterity.
- Everything else is the administrative detritus of being sick. Not a hobby, but necessary.
Physical health - what you should and shouldn't do to support your body - is something you need to talk to your doctor about.
The fitness advice for the general public does not apply for me right now. I have to be very careful around my stamina, injuries, and working around the port in my right chest. Certain activities are currently "out" - most water sports (submersion of the port in potentially dirty water), golf (jarring the port out of my carotid artery if I ground the club), heavy weightlifting (stamina and injuries), and any attempts at stupid human tricks.
For me, this is about reminding myself that everything I do needs to SUPPORT my body. Testing myself, nudging my limits, and trying to set personal records in much of anything is not only inappropriate, but has consequences.
Their book, What to Eat During Cancer Treatment is also very helpful. They divide out recipes based on issues you may be encountering during the course of treatment.
I have been doing a lot of walking. It is free and ensures that I stay mobile and independent. It also gets me outside when the weather is nice.
Walking is scalable. One of my cousins would pace up and down his driveway while he was on the phone during active treatment.
Even in the hospital, I would make it a point to pace the halls when I had a visitor - much to the chagrin of the nursing staff.
Walking = independence. Work with your doctor to determine what is appropriate for you.
When I was diagnosed, I was 2 weeks into a 200hr yoga teacher training certification. The certification is off the table while I am in active treatment, but I am still practicing with a focus on low-impact and slower forms of yoga minus any crazy arm balances or pretzel poses. Again, I have the port to think about and when I put too much pressure on that area, it tells me.
Yoga is also scalable. Restorative and Yin forms of yoga are just as helpful in maintaining your ability to get up off the floor and staying mobile as the more active forms.
I have found the following YouTube yoga instructors helpful. They are beginner friendly, good with modifications, and have excellent cueing.
- The Yoga Ranger Studio - Aprille Walker focuses on Yin and Restorative yoga. Her more active sessions are still slow and easily followed.
- Yoga with Melissa - Melissa West is one of my favorite instructors for providing and demonstrating modifications. She pulls from a wide array of disciplines and offers classes of multiple lengths and speeds. Check out her playlists for fantastic beginner-friendly series.
- Yoga with Adriene - I have been using Adriene Mishler's 2023 yoga journey to get back into something resembling my usual practice. Her style is more active, but these yoga journeys are some of the best designed fitness series I have encountered. I also recommend her 2021 journey for another well-paced series if you are working your way back to wellness.
- Yoga4Cancer - Tari Prinster has specifically designed these practices for those in active treatment and early recovery. These classes are well-paced and highly accessable no matter where you are at in your journey. I would also recommend these sessions for those with vertigo since she has removed all of the inversions.
The American College of Sports Medicine has guidelines available for cancer patients as well. The infographics at the bottom of the page are easy to digest and provide great guardrails as you work to maintain and regain your fitness.
Most importantly - run any desired activities by your oncologist. They will be able to tell you whether your desire to restart your parkour practice is a good idea.
In my opinion, the caregiver (particularly the primary caregiver) has the most challenging role in this entire journey.
My partner has had to be nurse, coach, therapist, cook, project manager, and chief patient advocate - all while having zero control over what is happening to his loved one and still maintaining his job since he is now the primary breadwinner.
To say that caregiving is under-valued and under-estimated in the US is a wild understatement. For a country that claims to have "family-values" - it is absolutely shameful the lack of support for those who are taking care of children, parents, and ill family members.
The most important resource my partner has is our network. I am blessed to have friends and family nearby when we need to lighten Ryan's load.
COVID, as terrible as the pandemic is, provided a more robust infrastructure for food and grocery delivery - which dramatically reduced the errands he needed to run when I was at my sickest.
Cancer.net (ASCO) includes resources for specific caregiving scenarios - including addressing caregiving at a hospital, finding home care services, and dealing with patients where cancer has impacted their brain.
AARP has extensive caregiver resources available. Though these resources are geared towards elder care, much of the advice can also apply to those serving as cancer caregivers. Their printable caregiving planning guide is a helpful place to start.
Cancer patient retreats
We were fortunate that my 2nd line treatment allowed us to get away from "Cancer World" for awhile. Cancer patient retreats serve 2 purposes:
1) They get the cancer patient around people who are making a similar journey while getting them in a new environment. Something I personally appreciated - between COVID and lymphoma, I got tired of staring at the same 4 walls.
2) They allow the caregiver to get a vacation and some restoration.
The cancer retreats I did were designed to allow the caregiver to get away without them having to worry about whether their loved one was taken care of.
I have, thus far, participated in two retreats. These retreats are free for cancer patients. The costs are typically transportation to and from the retreat.
These organizations play a crucial role in the mental health of cancer patients and their caregivers. Please donate to help them keep their work going.
Reeling and Healing Midwest (Michigan)- Teaching women with cancer how to fly fish in Central Michigan. Cath and the team designed their program as a distraction from being a "cancer survivor." The focus is on being outside, in the water, and fishing. They have registered nurses among the volunteers and everyone ensures that no matter your mobility - you can get out into the water and fish. I had a blast. As my health improves, I hope to get back out there to volunteer.
Ryan got to have a golf vacation while I was doing my fly-fishing activities. He also had a great time.
Mary's Place by the Sea (New Jersey) - The 2 days/3 nights of workshops and healing sessions are educational and an opportunity for female cancer patients and survivors to learn and practice integrative approaches to healing. I found those two days informative and met some fun and friendly women. And the food was amazing - both the breakfast and lunch served at the house and the restaurants in Ocean Grove.
This trip allowed Ryan to have the house to himself and binge watch the trashy movies I won't watch with him. He was happy to have me out of the house for awhile.
If I get a chance to take more cancer retreats, I'll post them here.
My goal with this page is to provide a starting point for helpful resources - focused on the ones I need and use.
This page is not meant to be comprehensive and will be updated as I find things and as my health allows.
If you have a resource you would like to see on this page, I recommend sending that information to the American Cancer Society, Cancer.net, or CancerCare.org so that they can incorporate your resource into their more easily found and regularly maintained resource pages.