After defying all odds and going through the medical procedures, I have gone through to get here, I find myself in an unexpectedly dangerous place. To quickly recap, I was given little chance to live when I was first diagnosed with Peripheral T cell Lymphoma in early 2018. A few issues made my cancer incredibly unique. First, it is extremely rare, so there has been little research done on effective treatment options. Second, it was moving horrifyingly quickly and evolving to survive chemo as I was getting treated like a having creature from Science Fiction living inside me, tearing me apart.  Third, it always returns quickly and worse each time, so a cure would involve taking any measure to get me into remission and quickly destroying my immune system and replacing it with a new one to keep me alive. There was no data or safe options. This would be making up the book as we went and throwing a Hail Mary.

After my last stay in the hospital last December, I have been doing very well. I was feeling, “cured.”  For the next five years, my new immune system might go through some problems and be carefully adjusted until it can function on its own. But anything can be handled with the correct information and decision making by my highly specialized and passionate team. I am out of imminent danger, or so I thought.

In my last blog, I expressed fear about some new potentially dangerous symptoms, but I have been responding to treatment well. My eye GVHD is under control; I will not go blind. Other neuro symptoms are being investigated but so far, so good. Everything was under control until yesterday when I had a very frightening day. It shocked me to my core.

Because of my intimate awareness of my fluctuating immunity, I have been a little more concerned about COVID-19. If I get it, it would be bad. Sanitizing everything, mask-wearing, and seclusion have been a way of life for me since early 2018. When we hit our first spike last Spring, and I heard discussions that if there were patient choices to be because of shortages of equipment, I would probably not win that one. I had too many high-risk factors.

But then things seemed a little more in control. I have been angered by the public and our officials not completely putting the hammer down to get this under control. I have been impatient with people and officials not following expert medical advice and making the problem worse. I have been mystified at how many people think this is fake or exaggerated. I have been deeply saddened to see not wearing a mask become a patriotic statement in some people’s minds. I have worried about all our medical professionals many of whom I have become very close to. I have wondered if our educational system had stopped teaching the difference between following evidence-based options and craziness. How to vet sources. I remember getting classes on this in High School. Where did that part of our education system go?

But yesterday, I witnessed a dramatic change in options for care for everyone.  Because of what has happened in just the past few days, we are now in a completely different crisis than COVID-19. It is much worse. I do not think the public realizes this at all. Certainly, new guidelines being issued by officials will do nothing to control this. They need to see the new environment. It is a public health environment that impacts everyone with all medical concerns. All the back and forth on mandates and masks, and if COVID-19 is real, and who to believe, has become completely irrelevant. It does not matter at all right now. COVID-19 is causing the new problem, but it is not what we need to address immediately.

I am extremely familiar with Northwestern Hospital in Chicago. In 2018 I made trips 87 different days for treatment. In 2019 I was there 108 days to be closely monitored and get my new baby immune system adjusted, as necessary. This year I have started getting my infant immunizations all over again. I know people well in all departments. They know me very well, and I have grown close to doormen, receptionists, billers, nurses, doctors, technicians, specialists. I am the one they got it right on. They are incredibly happy to see me. I make them proud. I am their big success, that they went to extremes for me and invented protocols that worked. That is not always the case on the oncology floor. I motivate them to keep at it and take the necessary risks. Because of my success, I have changed the treatment options for anyone ever getting this disease in the future. I was safe; until yesterday.

Yesterday should have been routine. I was just going to get a test done in the morning, some lab work, and a COVID-19 test, which was required for a lung function test I am supposed to get Friday. But I saw giant red flags immediately. Other people may not have noticed, but I sure did. First up was my drive through COVID-19 test. In the past, this has been a short line of cars and people on feet moving quickly. This is a testing site that is not available to the public. You need an order in their system from a doctor. Yesterday the line snaked around several blocks of downtown Chicago taking up a full lane on multiple streets. There was traffic control now. The walkers were separated. There was about ten times the normal medical staff doing their best to move the line. It took hours. They looked completely exhausted and defeated. I asked them if this was different than the initial Spring surge. They told me that was nowhere even close to where they are now. There was no comparison. They told me they could not keep up. This time greater and greater numbers of medical staff are getting sick, so not only has the curve taken an unprecedented spike up of need, simultaneously they have fewer professionals available for ANYTHING in all areas.

The next clue I got was the normally over packed parking garage had many, many fewer cars. This happened in the Spring when suddenly all non-essential treatments in all areas were postponed focusing on responding to Corvid’s needs. It was not like this just last Friday when I was there. I started questioning some fundamental thinking most people and officials have right now about healthcare and saw it is completely wrong. At one level or another, I think most people make a few assumptions despite their polarizing opinions about this pandemic. Underneath it all, I think the public generally feels they will come out of this OK. Some may have shown varying levels of concerns for others that have driven their choices. They may be concerned about the weak. But if you are healthy, you probably would not get too sick. If you did suddenly get ill, you could just go to your local hospital. If you need access to more intensive care, you can be moved to a major hospital where you are confident you would have access to whatever care you need. Local and State governments will not let things get too dire. They protect us. We are safe. So we have been falsely confident. These assumptions are now wrong. Many have been reassured about access to care by watching constant statistics about ventilator availability and ICU beds available. It struck me these statistics we have relied upon are meaningless. It does not matter if their tons of ventilators and beds are available if there is no one to use a ventilator or provide urgent care. We should not use these counts to inform our evaluation of our safety. If you turn up at many hospitals in the country right now, you have a particularly good chance of being turned away, for ANY medical problem. It is hitting everywhere now. We will not be able to send help to hot spots. This is no longer a COVID-19 problem. We are in serious public danger and not aware of it.

I had my previously scheduled test without much delay and got my labs done and went to consult with my care team. This was when things got unbelievably bad. I had been getting increasing shortness of breath. Monday, my team thought I probably had lung Graft vs. Host disease. Something that was significant but not too hard to control with immuno-suppressant drugs. It was a pain, but I would be OK. Then we got some results showing this was not GVHD, and potentially could be profoundly serious and require swift care and access to equipment. But it was most likely solvable. I would be OK.

This is where the other safety net drops.

Because I was by this time completely out of breath and could not recover even sitting still, we realized we needed to figure it out soon. Although I could not breathe, I had perfect oxygen levels. This could indicate many possible conditions that would potentially need to be responded to. My doctor wanted to admit me immediately. Because of my extremely specialized care needs, I usually get admitted to a special floor reserved for immune depressed stem cell patients. It is never full. Usually, just a few rooms are being used. My doctor’s office room suddenly filled with doctors and schedulers, and nurses all simultaneously speed dialing and paging every possible resource. Everyone was calling in every favor, begging and pleading, trying to get me any room, trying to get me a lung function test, trying to reach cardiologists and pulmonolotists. And they were getting no replies of answers saying they were so short-staffed all options were beyond the max capability, and there was no way I could get the information of treatment that I may need to save my life. I was at high risk for blood clots, heart attack, stroke, among other possibilities. We are not talking COVID-19 here. I am no longer safe.

You are no longer safe. I know I can need access to a ridiculous number of Professionals and services. But I am marked as the highest priority for care. I know and accept I am in a danger zone. I have made peace with that long ago.

My fear is what you do not know. How this can impact everyone. How vulnerable everyone is. The decision-makers we count on do not know. I am terrified for my community and my country. If despite every possible connection and priority I have, I could not get a room, a cardiologist, a pulmonologist, skilled care, an MRI, a CT scan, tests to see if my heart and lungs are working at one of the best equipped hospitals in the country; If I can’t count on this access, can you? What is about to start happening? Has all urgent care become unreliable because there simply are not enough resources? Our assumptions are wrong, no matter what your views about the pandemic are. Statistics and attitudes about availability are no longer relevant because the people that provide this care are sick at a much high rate than ever before.

The solution has become stripped of all confusing and controversial arguments. It has become very simplified and clear. We need to respond to code red status with immediate code red solutions. I am not advocating long term closures of mandates. But we must do everything we can to pause this. We need to shut down as completely as we can, as quickly as we can, and give our medical infrastructure a chance to recover and re-group so we can rely on them again. It may only take a few weeks; then, we could again return to gradual reopening.

We need to recognize this shift. This is no longer about Covid.

Sorry I have neglected my blog and left my dear readers at a cliffhanger.

I entered the hospital on Dec 18, 2018, for my stem cell transplant. I was warned it would be challenging, but felt more than ready and was deeply appreciative that I got to the point where I could have a stem cell transplant. A stem cell transplant was necessary for me because, without it, my cancer would return repeatedly, it would be worse each time. It is a Hail Mary treatment. I was told it would do damage to healthy cells, but the extent was unpredictable. My stem cell doctor said to me that “chemo is like special forces, seeking out and killing my cancer. Now we are going to burn down the forest, to make sure nothing is left”. My doctors told me my boosted chemo (125%) was nothing compared to what I would be receiving. Mega chemo bombarded my body for six days. There was no question of me having side effects from chemo; I would get them all. At the end of these six days, my stem cells in my bone marrow, my immune system would be gone. This vulnerability is why it was so crucial for me to be infection and cancer free. In this very vulnerable period, I was in danger of having disease or infections spread unchecked between my old and new immune systems.

It was a pretty harrowing experience. As forewarned, I had many side effects. I lost my hair again, and this time it has never quite come back to the way it used to be. I had mouth sores, so I could not eat and had to be on morphine. I have never been so completely debilitated. I remember asking one of my doctors about a symptom, and she replied, “you should expect bad side effects. After all, we are poisoning you with extremely toxic substances. We do not have much control over what they impact, so healthy areas are attacked as well.” At that moment, I felt the impact of both how very primitive medical science could be and also in awe of the new technology and drugs which were keeping me alive.

The day after Christmas, I received my new stem cells. There was not a good match for me, so I had to go with my brother’s cells that at least were genetically the same and a half-match. The transplant procedure itself was remarkably simple. A large metal container, which kept my new cells frozen, was wheeled into my room. My stem cells were in an IV bag. The nurse thawed my frozen stem cells in running warm water in the sink. This seemed very surreal and low tech. Then they were attached to my IV and slowly dripped into me over about 20 minutes. And that was that! Eight million new stem cells upon which my survival rested. Then the waiting game began. Labs were constant, watching for an increase in white blood cells. That would be a sign that the stem cells had grafted and were building a new immune system. I had a prolonged build. It was very nerve-wracking. We were also looking out for an immune system that was too aggressive and would start attacking my healthy cells.

After about eight weeks in the hospital, my body developed my new immune system to allow me to go home. I had a very long, slow recovery. After my transplant, it took months for me to walk, sit, read, write, and to start to function. Interrupting that recovery were frequent infections, which landed me repeatedly in the hospital in 2019. I had to get transfusions twice a week for many months to help the levels of blood components. My new immune system was not very strong because I had to use half-match stem cells. In October 2019, I went back into the hospital and received a boost of more of my brother’s stem cells. Just in time for a worldwide pandemic, this finally got me to the point where I could ward off infections.

So now I have unusual biology. I have a 1-year-old baby immune system inside a 60-year-olds’s body. I even have to get my baby vaccines all over again. My brother’s cells have completely replaced my old bone marrow and blood. I have a new official status. I am officially a medical Chimera. https://www.medicinenet.com/script/main/art.asp?articlekey=8905
I majored in Ancient Mediterranean Art History, so this mythical beast composted of different animal parts was familiar to me.

Today I have two sets of DNA, existing together somewhat peacefully. The DNA in my blood is entirely my brothers. The rest of my body is my DNA. I feel an irrational sense of loss, losing such a significant part of me. Crazy as it sounds, I slightly mourn the loss of my blood and feel a tad like a Frankenstein, a new thing patched together from different people that do not function entirely normally. But above all emotions, I feel gratitude. Grateful for my brother’s love and his never-wavering support in giving me a part of himself so I could live. I feel thankful to the extraordinary team at Northwestern Hospital that pulled off my science experiment. Grateful, I am here, have more time with my family and friends, and have new experiences.

With extreme trepidation I received another PET/CT scan on Monday. I do not think I have ever been so nervous in my life. After chemo failing half way through the summer I was very concerned that the same may have happened with my clinical trial drug. Very fortunately I got the wonderful news that I am still in remission. My scan was clear again. Phew!

That news means things will start happening fast. We want to strike while everything is clear and not delay and allow the cancer to come back. So today and tomorrow my amazing younger brother has been hooked up to a machine for me. He has patiently sat all day to donate stem cells for me. We are about to become even more bonded. Tomorrow I hope to be discharged from my clinical trial. Then the long hoped for stem cell transplant will commence.

I will be going into the hospital for at least a month on Dec. 18th. The first 8 days will be mega chemo to wipe out my white blood cells. This will be tough, I have been told I will loose my hair again and probably experience every possible chemo side effect. I feel ready for this. Bring it on! Then I will get a day off and on the 10th day, or in transplant speak, my day 0, I will get a simple IV for about a half an hour to bring me my new immune system. I will remain in the hospital and receive various treatments to keep me healthy and assist me in developing new blood cells. When I reach a safe level I will be allowed to go home. I will have a few months of recovery and restrictions for a few years. I hope to be home near the end of January.

Going to be the best New Years ever!

I started my clinical mid September. After 28 days on it I had a full body PET and CT scan. I knew things were improving because I could no longer feel large lumps on my neck. Also I had lost the sensation of being strangled in my throat. I was hopeful my scans would show improvement and thinking if they did perhaps the dose would be raised and we would continue. The scan was much better than that, it showed remission. No metabolic activity, that meant no active disease. It was a pretty wonderful moment to say the least.

I have continued on the clinical trial drug to keep me in remission until I have a stem cell transplant. Today I had meetings all day at the hospital. Things look like they are continuing to go well. So we are pressing forward with my transplant. Very soon. My doctors do not want to give my cancer a chance to return. My brother is going to be my donor. So he has scheduled testing and dates they will collect his stem cells for me. It looks like I will be going in the hospital the week of December 10th. The first 8 days will be mega chemo to kill off my white blood cells. Not really looking forward to this part. Then I will get a simple IV to receive my new stem cells. I will be in the hospital at least a month while my new immune system is building. Then I will be gradually recuperating for several months. Because I am using a donor there are some additional possible side effects. Mainly from something called Graft vs Host disease. A little of this is a good thing, it will mean my new immune system is active and aggressive. However too much aggression can become a bad thing. It could be a minor reaction like a skin rash, or my eyes, mouth, liver, lungs, muscles and joints, digestive track or many other organs could be impacted. Woah. I am such a planner, I wish I knew what to expect post transplant so I could start adapting if necessary. But I have to just roll with it.

The new year is a big unknown territory for me, but I still feel very grateful to have the opportunity to look forward to it.

When you have cancer which does not respond to treatment typically or as anticipated, you can then be classified as having Refractory Disease.

This week has been a little challenging. I finished six rounds of chemo over the Spring and Summer and was on schedule to check into the hospital today to start my stem cell transplant. To do that I have to be in complete remission.

On Monday I had a PET scan which is pretty much a full body scan, and I got the results on Tuesday. They did not show remission. Some of my areas of cancer are still here, and some areas got more massive, and most frustrating some areas which I did get clear are full of cancer again. I am not in anywhere near as bad shape as I was when I started in February, but indeed, I am nowhere near remission. The cumulative effects of chemo have brought me to my knees, and the last two rounds were turbocharged, boosted chemo = 125% strength, in an attempt to get ahead of this wildly aggressive cancer.

So onto Plan B! There is a brand new drug which the research community has been working on diligently for four years and has shown success. So next week we are going to try a completely different approach, and I am entering into a clinical trial to see if this will be effective for me. I will just be taking two pills daily. I am happy to have a break from chemo to give my body a chance to get a little stronger again.

The other piece of news I received is that I no longer am eligible for an Autologous transplant, using my own harvested stem cells. I now will need to have an Allogeneic transplant, using a donor who will probably be my brother. This is disappointing because it becomes a more complicated and risky procedure. But first I have to get into remission. If the clinical trial does not work, there are still other options we can try.

Just before I got my results, I was fortunate to read an article by Dr. Kamath from the oncology department at my hospital Northwestern Memorial, which was published in the Tribune. http://www.chicagotribune.com/news/opinion/commentary/ct-perspec-cancer-war-aretha-franklin-john-mccain-0826-story.html

He made a point beautifully that I really needed to hear. He describes the attitude that many people with advanced stage cancer feel they need to take. I certainly have been. The idea that if I was enough of a warrior, had a positive enough attitude, kept my spirits up that I would be sure to defeat this. I still maintain that it is vital to keep a positive attitude, but I now know I do not have to take personal responsibility for the complex chemistry going on within my body, or feel guilty if I hit a setback. Cancer continues to teach me valuable life lessons. I am eager to get going on my clinical trial next week and hopeful it will have an impact. If not, well then it will be onto plan C!

I did not realize, at the time, I was learning what turned out to be some of my biggest life lessons. Food service is full of life lessons. I think it is because there is so much happening so quickly you have to learn to become very fluid.

I wrote earlier about working for Chef Charlie Trotter and his famous phrase “Make it Happen”. We would have something unexpected come up, and he would push us to come up with a new solution and not look back. I was also a regional manager of 6 bakery-cafes in the financial district in San Francisco during the dot-com era. There is always something unexpected coming up in that environment: someone is sick, a delivery did not get made, equipment breaks, a customer wants a huge last minute order…. I was always trained to have a plan B in my back pocket. I joked with my boss that some days I went through the whole alphabet and was on plan Y or Z. It was stressful but also fun. What I gained from that experience is one of the best life lessons I have ever learned. No matter what comes up, I can adjust and make it. I will be OK and maybe even better. I have tried hard to teach this attitude to my sons, to give them ease and confidence.

I was thinking today about how aggressive the phrase “Make it Happen” is. Sometimes its time to go toe to toe, but not always. Maybe more important is what comes from knowing you can make it happen. I think the next stage is realizing “Know you can adjust”. That’s a pretty cool thing to get down.

This is a lesson I am drawing on hard right now with my experience with cancer. Last week I had what may be my last chemo treatment. However a few days earlier I had a CT scan which showed new growth in my throat wrapping my airway again. There should be no further growth once you start chemo. I am supposed to be done with chemo. I have had 6 rounds. This is a sneaky cancer.

I am scheduled to be admitted to the hospital to begin stem cell transplant on August 30 using my own harvested stem cells. However, if I am not in complete remission, this will not happen. We are giving the chemo I just completed a couple of weeks to work. Then on the 27th of August, I will get another scan. If it still shows cancer, I will get another round of chemo using different drugs. One of them is related to mustard gas like they used in WWI. Mustard gas right into my veins, yikes. At that point, I will be admitted for my transplant. If I have been able to go into remission, I will get to use my own stem cells. Using my cells is highly preferable. If I still have some residual cancer, I will use a donor. The donor will be my brother Chuck. I love Chuck and we have always been there for each other. So still lots of options, I am just not sure yet which plan I will be using. But its OK because I have a whole pocketful of methods which I know will work out.

Tonight I start giving myself three injections a night. The purpose of these shots is to increase my production of stem cells. I need to make ten million this week! Ten million!

On Tuesday morning I will go to the hospital early and have another port surgically implanted up by my collarbone. Three short tubes will hang off of it. Then I will get blood tests and wait around to get results. If all is well, I will go to the Blood Center at the hospital, and they will start collecting, or “harvesting” as they call it, my stem cells. I sit in a recliner for up to 6 hours, hooked up to something like a dialysis machine. This process will be repeated each day this week until they have enough.

However, we have a little hiccup to solve first. My labs last week showed low white blood cells and dropping platelets. So I have been on antibiotics and staying home to prevent infection. I have spent a couple days in bed improving my knitting. If my platelets have not come up tomorrow, I will probably have to get a transfusion, which may push everything back a day or so.

Next week I will have what is hopefully my last round of chemo. At the end of the August, I will receive another scan. Hopefully, it will show me in full remission. If so, I will be admitted into the hospital on the 30th to start the stem cell transplant process. However, if any cancer is left the stem cell transplant will not work. So I will have to do another round of chemo, using different drugs to try to wipe out any straggling cancer cells. If that still does not get everything, then I will start the stem cell transplant anyways, but I will have to use a donor. Using a donor would mean a much higher chance of harmful side effects from the process.

Lots of if/thens! Lots up in the air. Now is when all that mindfulness stuff comes in handy for sure. Follow your breath.

Today I am in the midst of getting my 5th round of chemo. One more round at the beginning of August. I have some serious unknowns in my near future that could have a major impact on my life. I should be super stressed or depressed but I find myself calm and happy. This cancer is really teaching me a lot. I will bring these profound lessons with me after I am cured. It is changing my life for the better. I am an old dog learning new tricks.

I have started to get nerve damage from my chemo. I am losing sensation in my hands and feet and my face/mouth a little bit too. Additional rounds of chemo will probably make this worse. It’s not clear with peripheral neuropathy if the damage is reversible. I may lose the ability to drive. I may become pretty clumsy. I may have difficulty using my hands. If it is reversible, it could take 18 months to 5 years to get back. After I am done with chemo, I will be getting a stem cell transplant. This is a pretty daunting and somewhat dangerous procedure. But it is a lifesaver. One of the big bitches about the rare cancer I have is that is always, always comes back. Each time it is harder to treat. Traditionally you do not get stem cell transplant until after cancer comes back. But each time it comes back it is more , and you have to be in remission to get the stem cell transplant. If I were to undergo the traditional treatment, my odds do not look good. I have read its just a 25% survival rate after five years. Because I have a specific factor linked to my blood, it brings that down into the teens. But here is where I luck out. My oncologist is an expert in my cancer and has published studies about new drugs, sits on the board that sets treatment standards…. So my fantastic team at Northwestern is not going to wait until my cancer comes back. Instead, we are going with the transplant at the end of August beginning of Sept. New clinical trials have shown this approach may bring my survival rate up to 80%. I’ll take that!

Stem cell transplant is much more involved and impressive than I realized. Its gene therapy, Star Trek medicine! I will be hospitalized and given super high doses of chemo to wipe out my existing white blood cells completely. This chemo will make regular chemo look like a walk in the park. As my terrific stem cell doc told me, the chemo I have been getting is like the special forces targeting my cancer, and now we will be burning down the forest. It is not going to be a question of side effects. I will get them all. I will get mouth sores and will not be able to eat and talking will be hard. They will put me on pain meds. I will have severe abdominal cramps, probably more nerve damage and will remain bald. The bald part is no problem. I like my bald head now. I will be very open to infections, and they will be addressed. I will be moving into a special room in the hospital where I will be for at least a month. When my immune system has been destroyed new stem cells will be introduced which will hopefully graft and build me a new immune system. It will be brand spanking new. I will need to get my baby shots all over again. I may have new allergies.. The big question is if I will qualify to use my own stem cells or if I will need a donor. If I continue to do well with chemo, I will get to use my own. This is huge because they should reacclimate to my body quickly. Once I rebuild my white blood cells, I will get to go home. I will be restricted in many activities and monitored carefully for the first year. If I have to use a donor, it will be a different picture entirely. The cells may not graft as easily. I will get graft vs. host disease, and they will probably damage some healthy tissue too. Commonly things like eyes, liver… can be damaged. They may not graft well. Immunosuppressing drugs will control the damage. I would probably come out of this scenario with some level of permanent disability.

Again here is where I am fortunate. At first, the possibility of losing my vision, ability to walk, talk, use of my hands freaked me out. If it happens, I am sure I will be upset for awhile. But, I started a pediatric therapy clinic in NW Indiana. I have incredibly skilled physical, occupational, speech, nutrition therapists that I work with and are resources for me. Our business is based on helping kids without abilities adapt. If I can’t talk, there is an app for that. I know because I am the one that started finding them five years ago and pushing our speech therapists to familiarize themselves with them and start using them. You used to have to carry around bulky and expensive machines. Now it’s just an app! Brave new world! So I know if something does get messed up I will be able to adjust and have the resources to help me. Life will no doubt be different, but I can adapt, I will be happy anyways. I will find new ways to do things. So I am calm and confident. What a fantastic idea to gain and I hope to carry this poise with me after I am cured. To let go of the micro managing and control and be confident and relaxed. Thank you cancer.