A Trip to the Block Center near Chicago, Illinois

For good or bad, I’ve been completely honest on this blog. It can make me feel exposed, but my prayer is that, by being transparent, God can use this to help someone else in the future. It is so helpful to think there is meaning in all of it – that it is all not just a haphazard series of events that lead to nowhere. 

We came to Chicago to the Block Center for Dr. Keith Block’s opinion. He is an integrative oncologist which is very hard to find. They have a day long series of organized appointments they put you through as their new patient. Then you go from there, deciding if you want to get treatment at the center in Skokie, Chicago or from home. There are good reasons to travel there versus doing chemo the way others do it. It's called chronomodulation. 

The place is more impressive than the other places I have been to – the building is large and you can see the sign on the big 3 story glass building from the freeway, “Block Center.” You are greeted by receptionists that give you a binder full of information, charge copays for 4 appointments, and collect about $1000 for specialized testing that won’t be covered by insurance. I’m sure I am just like everyone else who has been dealing with cancer unconventionally – so relieved to be in a place that takes insurance at all; $1000 feels like a relief. Everything is relative, right? They day ended up costing a few thousand dollars, not including travel and lodging. 

First we met with a therapist who has read all about us through surveys I filled out and she listens to “our story” a bit.  I can’t say I got a lot out of it except the metaphor that our day is like a finite bowl of energy and we need to decide how to maximize how much we have and listen when we are out of energy. I find it really hard to pace myself, especially when I am working in California or when I am with my grandkids in Colorado. In other words, I find it hard to find a pace where I don’t feel like I am pushing myself too hard OR I feel like I am wasting valuable time. She did make the case that meditation can help to clear the mind and calm the body for rest that can add energy to the ‘bowl’ for the rest of the day. This has been a weakness of mine – taking the time and dedicating myself to guided meditation. Fortunately I pray a lot but there is a difference. Both are very valuable. 

Then we met with a nutritionist that has looked at how we eat, acknowledged that we are ahead of the game, and introduced us to the ‘proven’ Block diet. It is extremely low on animal products of any kind. I so agree that when we eat animal proteins, we don’t take in enough vegetables and fruits. They shun the ideas that have confused me so much like limiting cruciferous vegies because of my thyroid issues (huh, I thought those were supposed to be the base of an anti-cancer diet!?!), the lectins issue from Plant Paradox, and the idea that it all has to be raw to be healing (what? – no cooked, warm, cozy, nurturing foods)?!?

They just espouse large amounts of vegies, more limited amounts of fruits while getting lots of berries in, and only healthy fats but not focusing on fats the way keto does. 

Seems simple enough – until you go out to eat or until I feel like my knees are weak a couple hours after an oatmeal breakfast or only salad for lunch. I just don’t know. I feel so much better when I eat high protein but the research is pretty clear about how animal proteins feed cancer promoting growth hormones. 

Dr Block later explained that animal proteins and sugar make cancer cells super fire and, if certain pathways are blocked by meds, they just super fire in another direction. Again – so simple yet not easy to live out day by day. 

The first year after my diagnosis I was so disciplined. The second year I sort of shorted out on the diet thing. I let myself have wine again and focused on keeping my blood sugar stable but I haven’t stayed completely away from all sugar, dairy, and gluten. To think my PET scan improved over that year is a bit puzzling and reassuring at the same time. I guess we really don’t have to be perfect. 

Thirdly, we saw a physical therapist who put me through a stress test (I could have recovered better to my resting heartrate), body composition analysis (one of the great mysteries of my life is how my body has changed the past 5 years or so – I am 95 lbs lighter than I was the beginning of 2014 and my weight is surprisingly stable). She checked my flexibility – which is always where I do well. Then I had to do as many squats as possible in 30 seconds. I did 25. She said the doctor will want me to double that in 6 months “so it’s too bad I did so many.” I swear, everything is a paradox anymore. 

Then came the oncologist working with Dr. Block. She was like seeing any other oncologist. She looked at the chart and said she would be a bad oncologist if she didn’t urge me to get into treatment. She said she is shocked that I am doing as well as I am with “no treatment.” We tried to talk to her about everything we are doing but she brushed it off – just like the 3 other experts we’ve seen. Then she said she would want a new biopsy to confirm the diagnosis because no one does this well with AITL. The ole’ “dismal diagnosis” words were thrown around again – first by me, to be fair to her. I appreciated that she said she would not agree to put me though the standard of care without confirming the diagnosis which is something the others haven’t worried about. 

Keep in mind that I am on Facebook with a couple dozen others with AITL. I watch what they go through and it is brutal. And…I have seen several relapse, which is very common for AITL. Or they die, often as a result of the treatment. Mind you, their death certificate says they died from heart failure or kidney failure or pneumonia… Why did this happen though, because of the treatment. This is why I had to come to Dr. Block for chemo if I needed it; what I have read is that he does it much more safely and won’t let it kill you to try to cure you. 

At one point I sort of panicked inside that this oncologist was the doctor I’d be seeing there. We asked and she reassured me that we’d be spending quite a bit of time with Dr. Block. 

After waiting another 90 minutes or so, we finally got some time with Dr. Block. He seems kind and very knowledgeable. He throws lots of names of people and research centers around – a lot. At one point, I felt kind of hurt because, after talking about what he knows of our case, I started asking my questions listed on my phone. He interrupted me to ask how many questions I had. It was late in the evening, after all, and we were the last people in the building. I fired back that this was my one and only chance to ask them but he claimed we could talk on the phone. Ya right. The guy is obviously overbooked all the time. I am so sick of trying to ask questions through medical assistants and receptionists. 

So…the relief came when he commended us for how we are doing and told us that he would keep doing what we are doing, tweaking to his supplement regime because he has designed them…blah blah blah. I don’t mean to be disrespectful and I bought many of his supplements but they all same the same thing about how theirs are the best. I needed a change in a few places anyhow. I love that he has a high curcumin supplement, which I have been looking for, in the hopes that the it will help with the intermittent and often very painful swelling in my joints, hands, feet, ankles, and behind my knees. 

He had them draw 24 viles of blood and take urine for testing. I am taking home a spit test to look at cortisol and adrenal function. I have to go off the melatonin I take with the low dose naltrexone, which has been shown to inhibit cancer growth, for 3 weeks before I can do that test and send it in. I’m kindof worried about sleep. It has been a challenge in the past. And, for reasons I’ll explain later, has been disrupted lately – not to be to dramatic – but in bouts of terror that creep in overnight. 

I should have a phone consult with him in 5 weeks for all the results and his recommendations from there. Billable time, of course. 

I left there feeling … like a new marathon has just started in the midst of the marathon. Weary and ever so grateful that My Drew was there with me to walk back to the hotel and then to dinner with it all swirling around in our minds. 

A particular frustration I have is with several issues the doctors keep avoiding, shaking their heads but doing nothing to help me find answers. I was diagnosed with chronic Lyme disease years ago and especially with a co-infection called Babesia. It was Atovaquone (anti-viral) for the Babesia that just may have triggered the lymphoma. I read after my diagnosis that I should have been on it for no more than 10 days. I was on it for several weeks and it can trigger lymphoma. I blame myself for taking it although it was a respected integrative MD who prescribed it. She was so weird when I was diagnosed with lymphoma - almost quip about it with no referrals or guidance. I will never go back to her, obviously. 

I have raging Epstein Barr Virus. Everyone acknowledges that it is the smoking gun for why cancer is able to hold on and it seems to be the precursor to many lymphomas. But no doctor seems to have a clue about what to do about it. The ND in Boulder wants me to spend tens of thousands of dollars to go to Canada for whole body hyperthermia. And/or, she wants me to spend thousands to go to her center in Boulder 3 times a week for 10 weeks for UVLRX where they shoot UV light through your veins during an IV to kill the virus. I did lots of UVLRX at the Cancer Center for Healing the first year after diagnosis. I asked Dr. Block about both of these and got so typical of an answer: he has no idea how to help me but he doesn’t buy into either of these options. UGH!!!!!!!

Now I have a new strange issue. One I am having a very hard time with. I can’t talk about it without crying. I have complained about a strange swelling in my throat for over a year to every doctor I’ve seen. A year ago I tested positive for Marcons in my nose – a mold. I treated it with Argentyn Silver, a natural antibiotic, anti mold, anti fungal of sorts. When I went to see the ND in Boulder, she took me off of it stating that it can act like an antibiotic if you take it long term, destroying needed gut bacteria. 

I asked the DO in Irvine to swab my throat at my last appointment (when she told me the PET scan was good news). I asked her to look at my throat to see if it is all in my head. She confirmed that my tonsils look red and swollen and had her MA swab my nose and throat. 

MRSA. How in the hell is it coming back at MRSA in my nose?!? I get a phone message from a compounding pharmacy that they have a prescription for me with a nasal nebulizer. I go pick it up and – wow – a whole bag of stuff I am to use morning and night with no end in sight. MRSA. I decided not to panic until I saw Dr. Block to ask him about it. He just shook his head and asked why they tested me anyhow. I said my gut was saying to get retested. After a restless night, I called his office to set up a retest and got the message back don't have the equipment and to go back to the doctor in Irvine to be retested. I was with my grandkids last weekend with the usual kissing and hugging. I am to be with them this weekend. Hence, nights waking in terror. What if I have infected them already? What if I should not be with them this weekend? To be with my precious family I haven’t been with in 7 weeks is the whole reason to be in Colorado next week and for Easter. I used to worry about giving them EBV. Now…MRSA. What the heck?!? 

I called the DO to ask about the MRSA. After all, my only info has been that I have it and need to go on antibiotics. The prescription is written for 30 days with several refills. How long to I stay on it? Am I in danger of infecting others? Her MA called and told me to “try not to sneeze on the kids.” WHAT!?! That is my direction? I started to cry and she softened up. 

I feel like I always know just enough to scare me and not enough to know what to do. I just want to live my life. I have gone to medical people as consultants and I know now that I am in charge. But, shoot…I don’t know what I’m doing – with any of this!!!!!! I’ve consulted several people and everyone has a different opinion. I am more cautious than ever with the kids. We have all decided to use caution but to not let fear rule our lives. 

I’m so thankful for the way Cam and Hailey think. No fear – just faith and intelligence. What a great way to raise kids. 

Just after our day at the Block Center…I see a little one about a year old in the lobby of the hotel. She obviously is ill with a big shunt in her head held on with tons of gauze. Her haggard parents were checking out of the hotel. I know God doesn’t work this way but I pray for them while standing there with the realization that I have had a full and rich life. This little one hasn’t. I go there…the prayer to give her a full life and if someone has to not make it…let it be me. Don’t worry. I really do know God doesn’t work that way. There is plenty of his power and mercy for all of us. But, it puts my situation into perspective and I pray pray pray for the little ones fighting illness. 

Lord, please be in it all. You are good and can make good out of anything. I’m so grateful to know that. 

Onward and upward.