In the summer of 2016 I kept getting an image in my head I felt compelled to make. I did not know what it meant, but it kept coming to me. I was visualizing my torso with large trees growing out of it. I could not shake it, so I decided to make a piece about it. The piece above is the result. I printed my torso on metal flashing and then floated above it a photo of trees growing. The view of the trees is from a hammock I grew up laying in. I have watched those trees grow my whole life. A couple months later I found out what was growing in me. I found breast cancer. Less than a year later I found out my breasts, and my whole abdomen was filled with enlarged and asymmetrical lymph nodes. I had lymphoma. Whoa! How did that get in my head so far before I had an inkling anything was wrong. I have no explanation, but I respect the shit out of it.

Part of getting through this is sensing the pattern of my treatment. I need to understand what I can do when and be ready to be fluid and adapt my plans as needed. I am now hopefully halfway through my chemo. I have recognized some things that help me. I have some tips to share.

I get three days of chemotherapy followed by 19 days of recovery. This continues for 6 cycles. After this, if I am in remission, I will get stem cell transplant. When I get my chemo, day one is a Tuesday and when the bulk of drugs are given to me. Everyone reacts differently, but this is my pattern. I usually feel pretty good going in, but by the time it is done I am feeling pretty crappy. I need help getting home. I am weak, disoriented, and very spaced out. One of the drugs I get on chemo days is a high dose of steroids. So I may be exhausted and hyper at the same time. On day 1 chemo, I will get nothing done. I feel a little better by the end of the day.  Day 2 and 3 are much better, but I am still pretty wiped out. I have found out I need help getting to and from chemo those days too. On Friday I wake up feeling pretty good. Then I have to get a shot to increase my white blood cells. This wipes me out completely. Time for Netflix. Anyone have good recomendations?

Chemo has some substantial side effects and impacts. They are cumulative as treatments continue. My white blood cells drop making me vulnerable to infections, my platelets drop making bleeding a problem. I develop spontaneous bruises. Sores can develop in my mouth. I can wake up covered in sweat as I process drugs and lymphoma out of my system. My digestive tract goes nuts. Food tastes too spicy. I am getting peripheral neuropathy. This means my hands and now also my feet are numb and tingly. My fine motor sucks. I have to wear flip flops inside because if I start to step on something I may not feel it. This nerve damage may be permanent, or if it is reversible it could take a very long time. I have “chemo brain”. This means ADD. I walk across my apartment and have no idea why.

Ok so all that sounds not too great, but I have figured out some things that help:

• I use an app on my phone called AnyList. I have a list for everything! What I need at the grocery store, questions for my doc….. The second I think of something I put it on one of my lists.
• I have another app called BillMinder. All my bills are listed in it, and it sends me notifications when they are due. I really do not need my lights turned off right now.
• I set alarms on my phone
• I load up my fridge before chemo with simple, easy to prepare foods. Luckily I am in Chicago and have Trader Joes. They have a terrific freezer dept full of tasty prepared stuff.
• Get lots of hand sanitizer. Keep some on you.
• My mouth gets dry. Biotene makes good rinses, sprays, and mints.
• I love OdoBan. You can get it at Home Depot. It cleans, sanitizes and smells good. I get it by the gallon as a concentrate. You can put some in a spray bottle and spray everything, even upholstery or in your car. Spray and leave 10 min before cleaning. You can put some in your laundry, mop water….
• My skin has become very sensitive. Normal fabrics feel scratchy. Sometimes I am cold. So some soft hats or scarves are nice. The American Cancer Society gave me a free wig, but I never wear it. It is uncomfortable on my scalp. I knit hats and bought a little variety of different styles. I am not very good at the whole scarf turban thing. There is a great product some sisters who had cancer developed. They are like a scarf, but you do not have to tie them. They are soft and have elastic in the back hidden. So no need to figure out some elaborate way to tie them and they are never too tight. Nice to have something simple to throw on.  They are called chemobeanies:  http://chemobeanies.com/
• My feet get cold and its good to have something easy to slip on and off for chemo. I have a separate pair of flip flops I only wear at home. They never see the street. Also, these slippers look great. I am going to knit a few pairs. I can throw them in the wash and easily tuck a pair in a bag.  Ihttps://youtu.be/eUI1x-RuOM4
• I am not a big water drinker. It’s extremely important that I drink a ton now. I have found making some infused waters and keeping in the fridge makes drinking water much easier. Its fun and you can vary the flavors from day to day. There are a ton of ideas for this on pinterest:  https://www.pinterest.com/pin/AQhlxrry8k4GvssyKpswleY-ngzk4CZLYs9gd6SL4pBU8N5xBGuVQMs/
• Remember soft easy to get on and off clothes that don’t bind. Yes, I bought very hot granny panties! Lol. There are some sheets at Target in their organic line which are very comfortable.

I know once chemo starts I will not get much done that week. Being prepared to be low key is good. I also know the week after chemo I may feel some side effects of chemo more strongly. I may need to stay home and go on sanitizing overdrive if my white blood cell count drops too low. The next week I should feel pretty good. This is my week to do errands, get organized, get out a little more. Get some boredom crushers ready for those low key weeks. Maybe there is something you are interested in that you will have some time for now? I am taking an online class about wine. It’s ridiculous because I can not drink but I love all the history and as an ex-pastry chef I dig the fermentation chemistry.

I hope these tips can assist someone going through treatment.

While I was in that nightmare month of getting diagnosed, I made an appointment to see a social worker at Northwestern.

It was becoming more apparent that I was seriously ill. It was also becoming clear that this would be a long road. My life was about to change dramatically, probably permanently in some ways. At any moment it was possible to be hospitalized indefinitely. Who is ready for that?! I was going to have to beat some significant odds to make it through this. It was disorienting.

I mainly just felt a little tired and had this big thing on my neck! But I was in no pain, and the reality of my situation was hard to grasp. I knew I had to get on it and get organized and simplify my life. I needed to shift my entire focus to prioritizing this fight. There was so much to do, and I was exhausted and overwhelmed. I started getting panic attacks and downward spiraling into despair. It was hard to get anything done. So I went to see a social worker. She gave me some great advice. Some of it I did not want to hear, but adapting the concepts has been life-changing.

We talked about mindfulness concepts and identifying and doing things which put me in balance, dealing with stress. She told me I needed to adjust my expectations to meet my capability. She looked me straight in the eye and said: “You can only do three things a day.” What the what???!!! Apparently, this woman did not understand my life or how driven I am. I was an extreme multi-tasker. I liked to joke I burned my candle on all three ends. I am a single mom of 16-year-old twin boys. They are amazing but still need a lot from me. I am a business owner. I am CEO of a pediatric therapy clinic that works with special needs children. I also started a non-profit to assist families in need of therapeutic services, I am an active, prolific, exhibiting artist. On top of all that I want time to hang out with my friends and to do exciting and fun things. So three things a day? No way. She looked at me and said, “that is all you will be able to do.”

I had a million post-its listing errands, tasks, reminders all over the place. She told me to put post its all over, but to instead make lists with reminders of how to calm down or suggestions of things that make me feel good. Pretty quickly I realized this was freaking me out. I could not imagine getting anything done, and my life prepared, but it was about control and identity. I did not want to stop trying to be superwoman to the world. Shit, this cancer stuff is getting deep!

 

 

put on music and dance music:

 

We talked about mindfulness, yoga, and meditation. These had become essential tools for me in the relatively recent past as I struggled through a rough 3-1/2 year divorce. In fact, discovering them was life changing. So I knew what I needed to do, I just needed to return to my practices.

Mindfulness, yoga, and meditation very specifically address dealing with anxiety and depression. They work on reducing rumination and worrying. As my instructors taught me, depression is when you look back and overthink the past. Anxiety is when you stress out and focus too much on the future. The solution is to bring yourself to the present. Mindfulness also teaches not to ignore problems. To examine them and do what you need to do in a semi-detached way, then put them away. You “practice” getting yourself into a calm state. Gradually it becomes easier. Gradually it becomes accessible when you are agitated. Its like conditioned learning.

“Never let the future disturb you. You will meet it, if you have to, with the same weapons of reason which today arm you against the present.”

― Marcus Aurelius, Meditations

More on mindfulness here: https://en.wikipedia.org/wiki/Mindfulness-based_stress_reduction

This is not just trendy, feel-good stuff. There is some significant scientific research to back it up. Having experienced the benefits, I was thrilled to see mainstream medicine starting to recognize the mind/body connection and how it relates to our health. These concepts are part of my treatment plan at Northwestern. All three practices place a big focus on breathing exercises which I have found to be extremely useful. I may not be able to make the yoga power moves I was previously starting to learn. But I could breathe.

More on the science of yoga breathing here: https://www.unm.edu/~lkravitz/Article%20folder/Breathing.html

So I started purging what I did not need from my life. I did this on all levels. No, I did not keep the boxes and boxes of files that resulted from a three-year divorce. No, my kids did not ever have to see every speech therapy note from many years of therapy. Yes, I needed to get rid of the rest of that toxic guy’s stuff. Choices became more natural to make. Less was in the grey zone. I asked for help – a new experience. I set up as much as I could to go on autopilot. I slowly pulled dreaded tasks, one by one from my back burner. I gave up control where I could trust. I did not focus on what I could not do; I made adaptations. I felt lighter. I could relax.

“There is a huge amount of freedom that comes to you when you take nothing personally.”

― Miguel Ruiz, The Four Agreements: A Practical Guide to Personal Freedom

I remembered someone who trained me for my first managerial job in San Franciso. He demanded that I replace the word “problem” with “opportunity”.

Try that.

For real.

I remembered working in the kitchen for Chef Charlie Trotter. Inevitably something unexpected would happen which created panic. People would go to him freaking out because service was starting in an hour, and your special lavender from France was not delivered… He would calmly look at you and say “Make it happen.” Every time you sputtered a new concern, he would interrupt you and repeat the phrase “Make it happen.” In other words, stop crying over spilled milk, look at what you have and come up with a plan B. It may even be inspired and better. Some days require half the alphabet. Rapidly adjusting was a huge trait for me to foster. It is an excellent skill to have.

 

I thought about my favorite word. I was about to have it tattooed on me when I got sick. When I get better, I will. Equanimity. Equanimity is “is a state of psychological stability and composure which is undisturbed by experience of or exposure to emotions, pain, or other phenomena that may cause others to lose the balance of their mind. The virtue and value of equanimity is extolled and advocated by a number of major religions and ancient philosophies.”

It is fascinating to me what a significant concept this is for many different belief systems. I have been working on developing equanimity in myself for the last few years.

More on equanimity here: https://en.wikipedia.org/wiki/Equanimity

If you want to get into with me, you can dork out on the concept of “Ataraxia, the lucid state of robust equanimity characterized by freedom from distress and worry.” Ataraxia is not to be confused with indifference. Greek schools of thought that emphasized this are Pyrrhonism, Epicureanism, and Stoicism.

“You always own the option of having no opinion. There is never any need to get worked up or to trouble your soul about things you can’t control. These things are not asking to be judged by you. Leave them alone.”

― Marcus Aurelius, Meditations

Then I  realized I felt incredibly happy. I felt purified, content, relaxed yet energized. I was loving life. I was happy even with my body riddled with rapidly progressing cancer. Well isn’t that surprising and interesting? It took this diagnosis to make the changes I needed in my life.

A few weeks ago I went through a pretty rough patch. It looked like my treatment was not working, and the cancer was enlarging everywhere. Sometimes a bump the size of an egg would pop up on my neck in a few days time. This shit is like a bad sci-fi movie. I still had options, but not many. It became a race. My airway was closing, and I may not be able to be tubbed. Time to bring my A game.

I started lining up my warrior bitch weapons. One weapon was staying focused and composed through the mindfulness stuff. But I wanted to engage this monster and defeat it. I pulled out another weapon. I would not let it see me flinch. I put on a jaunty hat. I bought a stone alligator and put in my living room. She is baring her teeth. I told my boys this is to remind us we are fierce.

 

Another powerful weapon has been a gift to me. It is love. I have received an incredible outpouring of love and support. It has come from people I have known since childhood as well as recent friends. It has come from complete strangers. Like the busboy at The Shake Shack. It was a hot day, and I had struggled to walk there with my boys. I was not doing very well that day, and I was sad they were getting on the train and would be gone for a few weeks. From clearing a nearby table. He noticed me as we were getting ready to leave. He asked me to hang on a second, and went and got me a big refill of my lemonade with lots of ice for my walk home. Then he held the door as we left and gave us an enormous smile and told us to have a blessed day. Even strangers sometimes recognize a warrior bitch in need of assistance. People are awesome. All this love coming at me has created a buffer, armor, which negativity has a hard time penetrating. It carries me along a couple of feet off the ground.

I get my blood drawn through a port in my chest a few times a week. I was getting to know the nurses. I went in for a lab and got the nurse that had seen my last numbers and knew they were not good. BUT, the day before I had a PET scan, and it showed shockingly good results. Suddenly my treatment was working! Not just working but blowing cancer away. My abdomen was no longer full of disease. My spleen was normal! Much of my cancer was gone! I still have a ways to go and stem cell transplant will be no walk in the park. But now I am winning. I told my nurse the news. She was delighted to hear it and told me a story. She takes the bus to work every day. One day her driver asked her what she thought the role of attitude was in defeating cancer. I knew it was essential but was shocked at her answer. Keep in mind this is coming from a phlebotomist, not a social worker. She said 80%!! Wow! She told me that as soon as they see someone give up, they can see it in their lab numbers. They immediately decline, and the disease takes over. She said I stood out in the waiting room because of my smile and positive attitude. The jaunty hat is a powerful weapon. 80%!

I was very sick and about to get sicker before I could get better. Time to get my ducks in a row! I had an overwhelming number of tasks to undertake to put myself in a position of hitting this disease as hard as possible. Failure is not an option, I have 16-year-old twin boys, who have special needs. Although they are amazing, they are cookies which need a little more time in the oven. I am not done with my mom job. Plus I love life. I need to live.

I was utterly exhausted and feeling lousy, but I went into turbo mode. I lived part of the week in NW Indiana where my boys go to school, and I have a business. When the kids are at their dad’s, I live in an apartment in Chicago and make art. I planned to permanently relocate to Chicago when the kids finished HS and commute to my job. I had to hustle! I got out of my lease early and moved to an apartment in downtown Chicago a few blocks from the hospital. I wanted to try to make things as easy as possible for treatment and also to be somewhere that would be good for my boys. I went way out on a financial limb an found a great place in the heart of the city. I am CEO of my business so I had to ease myself out of my daily responsibilities and make everything I could cloud based so I could access it anywhere. Fortunately, I have a fantastic team and can complete my reduced workload remotely. I had to prepare my house in Indiana to be shut for an indefinite period. I was told my treatment would take several months followed by a year of restrictions and close monitoring. I could not be in Indiana. I would not be able to care for my children. This was the hardest news I have ever received. I could provide a fun summer full of new experiences for them. I had to get my bills on autopay, and I had to set up estate planning.

I started the first of 6 chemo treatment rounds in April. I have three days of chemo followed by 19 days off. I completed a few rounds of treatment with mixed results. The cancer was out racing the chemo. Then I got an infection and needed to be hospitalized. I only completed one day of my three chemo days. Following this, I got very sick with strep. My throat was constricting making it challenging to eat. A scan of my neck showed lots of new growth. The chemo was not working. I was told my stem cells could no longer be used for my transplant. Using someone else’s white blood cells changes stem cell transplant entirely. The risk of healthy tissue being hurt becomes probable. Common areas attacked are eyes and lungs. Now my best scenario included unknown permanent disabilities. I was now dying. It was critical to find a solution quickly as my throat closed. I stood in Target and burst into tears because they did not have stationary for me to write letters to my sons. If my throat closed too much a tube would not fit down it. My doctor decided to change the chemo. In the meantime, because at least temporary relief was provided I would do one more chemo series with the old drugs while my new plan was developed. This turned out to be an excellent choice. A scan of my whole body the day before I was to start my new chemo drugs showed fantastic improvement. The chemo was working!!! My abdomen was almost completely clear, and my neck showed great improvement!! I have become a possible donor again. I have renewed hope. I am going to beat this!!!

 

This treatment was not going to be as simple as my breast cancer. I wished I could get something cut out of me. Lymphoma is a cancer of the blood and spreads via this liquid highway throughout my body. The treatment is chemotherapy. My particular type of lymphoma came with some extra challenges. It is chemoresistant. Because it is rare, there are not many chemo solutions. It is very aggressive. It always comes back, and each time it comes back it becomes more difficult to treat. I had a 25% survival rate after five years. Later this went down into the teens because of a factor identified in my blood. Here is where I hit one of many vital pieces of luck. My doctors are at Northwestern Hospital in Chicago. My oncologist’s specific area of knowledge and research is Peripheral T cell Lymphoma. In fact, she sits on the national board that determines testing and treatment options for Peripheral T cell Lymphoma!! So she has the best possible treatment knowledge bank and incredibly intuition. Usually, the treatment plan is for a series of chemo treatments followed by monitoring. If cancer comes back after repeating chemo, stem cell transplant is undertaken. In my case, my team decided my plan would be not to wait for the disease to return after remission. Instead, I would immediately get stem cell transplant. If chemo and transplant are successful, my survivorship goes up to 80%. I will take that!

Just before Thanksgiving in 2016, I found the dreaded lump in my breast. I immediately got it checked out, and I had a lumpectomy, lymph biopsy followed by a month of radiation. I beat it in two months. I thought I was a badass bitch. My energy returned, but then a few months later I started feeling lousy. I had vague symptoms, exhaustion, achy joints, difficulty getting out of bed in the morning, and was getting lots of small infections. I thought I might have Lupus. My blood tests looked normal.

In February 2018 I had to get a root canal. A gland in my neck was swollen, and I thought it was related to my infected tooth. I was put on antibiotics by my dentist which did nothing. I made an appointment for my root canal, and in that week the lump in my neck continued to swell. My oral surgeon was alarmed and convinced it was not related to my infected tooth. Because of my breast cancer diagnosis, he advised I get it checked out. That began a frustrating month of many tests and waiting. In the meantime, the growth in my neck was expanding very rapidly. I thought this could not be cancer; nothing grows this fast. I had an enormous goiter like bulge on my neck. of course I was obsessively googling, and before I got my official diagnosis, I had determined I had Lymphoma. I was right, but what I did not anticipate was getting a diagnosis of an extremely rare and aggressive form of Lymphoma called Peripheral T cell Lymphoma. Additional tests showed that in a few short months the disease had spread all over my body through my lymph system. I had an advanced stage. I was eager to start treatment and start fighting back. The party this disease was having was over. Time to clean up the beer cans and ashtrays and get the hell out!