When the rubber meets the road

Thursday we spent the day at the famous City of Hope. It's so strange when you've heard about a place your whole life and then you see it in person. It's huge, very organized, friendly, and it felt surreal. We met with Dr. Nadamanee. She is obviously an expert in cancer and in lymphomas specifically. The long and the short of it is that this is a fast moving type of T-cell lymphoma. Most lymphomas are in the B-cells. It is rare so there aren't as many studies. The "Standard of Care" is CHEOP once a week for 18 weeks. This is heavy duty chemo regime consisting of 5 drugs. They are doing clinical trials where they are adding a 6th (with the chance of higher toxicity). Then, when the lymphoma is in remission, they do a stem cell transplant (hopefully with my own stem cells) with a 3-4 week stay at City of Hope. I am not showing "B symptoms" like night sweat and fevers, so we may have caught this early. I also have only 1 of the 5 things that impact...

I am surrounded by cancer patients. We sit around in comfortable rocker recliners. People are sharing ideas about how to get the veggies in, a fruit name juajabana from South America that she says kills cancer. Adding baking soda and lemon to water to boost immunity. I've been adding lemon to water to make it more alkaline. A lady just said she's been coming here since July. Another has been here 2 months. I am still anxious. How am I going to fit this all in. I can't really. I live my life by pushing myself and that is dangerous now. If I don't leave myself time for meal planning, shopping, making, I won't be eating the foods that can conquer this. I'll be doing like I always have - grabbing what to others might seem healthy most of the time but that may not (probably not). The anti-cancer diet is ketagenic. According to the National Institute of Health, www.ncbi.nlm.nih.gov/pmc/articles/PMC4215472/, Numerous dietary components and supplements have been e...

I haven't been able to sit down and focus enough to write anything. This past 5 days we have been in Colorado to take care of our precious granddaughters and also to see a pathologist I was interested in meeting. That appointment was a total bust. Aside from several interesting office procedural issues leading to frustrating communication breakdowns, the quirky doctor we did see essentially let us know that, although he is not an expert in cancer,  therapeutic doses of Cannabis are about 800mg a day. That is absurd. There are other reasons this can be a helpful substance but apparently I cannot rely on it to kill cancer. Fortunately Dr. Connealy at the Center for Cancer Healing, where I am now going for treatment and guidance, uses Cannabis with patients so she will be our primary resource for how to fit it in to our plan. Information is power but I keep thinking about a term a teacher I grew very close to in high school used to use - "A smattering of ignorance." As I u...

Well, we have great news. No cancer cells detected in the bone marrow. It took me awhile to let that sink in. It could mean this is stage 3 Angioimmunoblastic T-cell Lymphoma. (Bone marrow would have made it stage 4).  If so, we probably caught it early because my lymph nodes are swollen but smaller than normal. It also keeps the door open to this being a misdiagnosis. I just feel it is. I don't have the classic symptoms and I have Lyme Disease and a Babesia Infection that can cause swollen lymph nodes. City of Hope hasn't been returning my calls. I thought the new patient person might be on vacation or whatever so I have called other numbers. I told my oncologist's office last week and, now that all the pathology reports are in, they promised to call yesterday. A doctor Nadamanee "the expert on lymphoma that trains the experts" is who we are relying on to definitively diagnose this. In the meantime - I get to go for some baby therapy today through Sunday! M...

What a steep learning curve this has been. A troubling one at times. A hopeful one at others. Today we landed at the Cancer Center for Healing in Irvine - just 20 minutes from home. A friend mentioned the physician director, Dr. Leigh Erin Connealy to me because a friend of hers goes to her. I then saw her book (I don't remember where), called The Cancer Revolution. I have read or scanned much of it. Then, while taking a look at the video series, The Truth about Cancer - which you can find free by googling it - there she was again. I have also watched interviews with her online with others and she has a You Tube channel on which she does informational talks to help all of us understand how to be healthy when 1 out of 2 men and 1 out of 3 women alive in the US right now will get a cancer diagnosis in their lifetimes. Prevention is the best treatment. Something that has been tough for me has been the idea that cleaning up my diet, reducing toxin loads on my system,  managing stre...

This thing is messing with my mind. No, Cathie, the fact that all day yesterday you did nothing but read and watch videos about cancer messed with you. I do suggest checking out Dr. Leigh Erin Conneally and the Cancer Center for Healing in Irvine. She seems to have put the two sides of medicine - conventional and alternative - together. She is all about cancer prevention and wrote the book, The Cancer Revolution. She was also featured in the series, The Truth about Cancer. I have only watched the 1st in the series of 9 (I think) videos. It frustrated me because he goes from person to person without sharing their credentials. I hate how alternative providers don't give you specifics but they always say they have data and expertise to back up what they say. Anyhow, I think I may have struck the balance I am looking for with Dr. Conneally. We will see when we meet her early Monday morning. And we still have an appointment with the cannabis doctor in Colorado next week. She also has ...

There was a time I thought I had to be "low maintenance" and brave. I prided myself on it. I told myself I had a high pain tolerance and I fought pain - labor, breaking my back, kidney stones every few years, including while in a tent in a field in Mexico. Whatever. I woke up today and knew my blood pressure was through the roof and I couldn't focus on anything. My mind went back and forth between what a weenie I am - "just think of all the people around the world suffering real pain" and - being scared to death at the prospect of being awake as someone bores a hole into each hip to get a core sample. I got there to find out there was no twilight sleep or anesthesia planned beside a local. That's what the websites had warned me about. The lady on the phone earlier - from Cancer Centers of America -described bone marrow biopsies as "somewhat traumatic so we will call you Monday to let you recover." That didn't help me as we drove to the surgic...

We are just so fortunate to live in Southern California. I met people today from the Virgin Islands, Australia, Texas. There were others but I didn’t get to talk with them. After meeting my sister in Oceanside at 5:30 am, we drove down into Tijuana to the Biomedical Clinic, also known as the Hoxsey Clinic. They have been there since before I was born, started by American doctors who could not openly offer natural alternative treatments for Cancer in the U.S. because of the way our system works. Most people who know me well know that my education helped me to become who I wanted to be. I am not brilliant or innately confident. Education gave me stepping stones into a new existence. So, the M.S. (Masters of Science) I have means a lot to me. I respect the Scientific Method and I LOVE working with inquisitive, hard working, smart people who are studying science. They work incredibly hard to understand – well, everything. Considering a cancer treatment with little to know scie...

Hi There. Well, the waiting was probably harder than hearing the diagnosis. It has been confirmed to be Angioimmunoblastic Lymphoma. We have a bone marrow biopsy Thursday and a trip to City of Hope to see a specialist in the rare Lymphomas soon. I still plan to check out what the Hoxsey Clinic in Mexico has to say and the pathologist in Colorado who has the most amazing credentials but uses alternative therapies. There is also Dr. Leigh Ann Connealy in Irvine I am looking into. She wrote the book, "The Cancer Revolution." What I ask for now are prayers for clarity and for God's hand to be in the choosing of the path from here. It is daunting - the various options and very different opinions as to what is the best treatment plan. I intend to use as much of my brain as possible and, once we chose a path, to commit with my whole self to getting well. Onward and upward. Cath

No news is good news, right? Well, if we don't have news by 4:00 today, it is time to put pressure on the oncologist to put pressure on the pathologist. My sister makes a good point -- will we trust whatever they say at this point? Then yesterday there was something about all the misdiagnoses that happen on TV. 2 people have mentioned it to me. I just don't know what to think. You read about fast moving lymphomas - I first went to the ENT in February, which started the MRI, needle biopsy, scalpel biopsy, PET scan ...  And still no answers. Patience is a virtue...

My mom's life was transformed by her involvement in A.A. One thing she learned, and taught, was to H.A.L.T. Never let yourself get too Hungry, Angry, Lonely, or Tired. Reach out to someone. Take care of yourself. Today I was too tired. We are considering selling our home and heard someone might come see it today - without it even being on the market. So, we have stayed up late two nights and up the next day for work. Packing, lifting, sorting. I am tired today. And that made me emotional and just plain down. Up until today, I was so focused on research and just marching through whatever is going on that I didn't experience any sadness, except when I would think too much about some very special people in my life that I just don't want to have to deal with this. I woke up shaky and preoccupied, hoping to hear from the doctors. My thoughts turned from relief, as I have felt since I was able to cancel the bone marrow biopsy and we all decided God had heard all our prayer...

Hi All,  At first I thought I should not share this information until we know more - to avoid confusion. But, I woke up this morning thinking it is unfair to those who are concerned not to share some potentially amazing news.  The oncologist called yesterday and told me to hold off on the bone marrow biopsy scheduled for this morning (and I didn't argue - this test was causing me much anxiety).  He got the pathology report from the biopsies taken through surgery last week and it said everything is normal.  We have no idea if there was a false positive with the first round of testing or if this is a false negative. So, we are waiting.  Or, is this an answer to so many prayers that I have been actually able to feel????  Thank you for keeping up the prayers and I hope to be sharing good news soon!!!  If I could ask a little favor; Please stop and pray for my dear friend, Emily, whose aunt and grandmother were killed in a fire y...

Hi all. Boy, I don't know how people work for a living and keep up with everything when all this hits. It has felt like something of a hurricane. Emotionally I feel right in the peaceful eye but there are so many calls and appointments and procedures... Monday was one heck of a long day, waiting to meet with an oncologist to learn the results of the more extensive biopsy of lymph nodes from under my chin and behind my right ear. And the results of the PET scan to see where the cancer is in my body. I think the day was hardest on my sweet husband who was alone working on the house most of the day. I had an interesting day going to get a medical marijuana license and meeting a dear friend at a dispensary in Santa Ana. I have learned that CBD and even THC from marijuana isn't just for nausea and to increase appetite in people going through chemo. There are cancer fighting properties too. The more I read, the more interesting this becomes. I am excited to have an appointment wit...

Hi. Thanks for caring to the point where you want to know what is going on. I am finding it really hard to tell people I have lymphoma and then I have anxiety about making sure the people who care about me know what is going on, while I don't have the energy to be on the phone, texting, and emailing constantly. And I want those with me to be able to be present and deal with this too. But, please. I have one request. If you feel like reaching out - do. Don't question yourself. If you are praying, that is what I need most so don't feel like I am wondering if you care if you are not in contact at any particular time. I know how hard it is to know what to say and do at times like this. Let's make a deal - I will be honest and I won't answer the phone or jump to the email or text unless I want to - at that moment. OK? Let's all give each other a lot of grace. I have said and done the 'wrong' thing in stressful times so many times...let's just give eac...