Somehow, some way, when I was told I had Stage 4 Mantle Cell Lymphoma, a switch went on in my brain and I told myself that I will do whatever I have to do to get rid of it and move on with my life. I did (almost) everything I needed to do to get through the treatments and beyond. In my mind I compared it to a work assignment that I was on for 6 months which would then be over and I would move on to the next. Several people have told me that they have never seen the kind of “warrior” strength I developed, once I was told of my diagnosis.
I don’t know where this strength came from but it was there when I needed it. I was the person who was afraid to get a random blood draw during an annual physical and here I was with a blood cancer where they had to draw my blood many times a day. I received over 40 transfusion units of blood and platelets during my treatments as well. The universe was obviously toying with me.
Part of having this strength was getting through what I had to do and reminding myself that failure was not an option. I relied on the doctors to do what they did best and myself to take the best care I could during and after the treatment. Mental strength was just as important as physical strength – going through cancer treatment is hard work and if you’re not all in you will have a tough time succeeding. You go through tough times and have to make tough decisions. Plus you are not feeling well which makes everything more difficult, including just getting through each day.
So I get through the treatments for my lymphoma, go into remission early, and the cancer has not come back in 6 years. My oncologist has me now on annual visits. My blood work and other medical tests have been good to excellent. On the surface you would never have guessed that there is anything now wrong with me. Except for one thing…..
It was discovered several years ago, by accident, that I do not make antibodies (also called immunoglobulins). I saw a Functional Medicine Doctor and he ran an allergy panel on me, among many other tests. Everything came back as 0 – almost an impossibility. I reacted to nothing on this panel of 200+ substances. Because of this he suspected I may not be making antibodies (immunoglobulins) due to the chemotherapy I received a couple of years earlier. There are simple blood tests to confirm this.
When we ran the tests, my bloodwork showed what he then suspected was correct. There are 5 classes of antibodies and 4 of mine were extremely low. The one that makes up about 80% of all of the body’s antibodies is IgG (immunoglobulin G) and I had a tiny amount. Antibodies/immunoglobulins are proteins made by certain white blood cells that tag “Invaders” so that your body can identify them and alert other types of white blood cells to get rid of them. If your body can’t identify substances that don’t belong in your body (like viruses, bacteria, fungi, etc.) then they can’t be tagged for ‘removal” and they run rampant.
We thought it would be good to wait and test me periodically to see if these antibodies come back. Every few months my primary care doctor would run bloodwork on me and each time things would come back low.
Everything was fine until 2019. I developed the flu after catching it from my husband who caught it at work. It took me much longer to recover. I developed a sinus infection and once I took antibiotics it cleared up. That year I also developed a cold, a UTI and then the flu again in November of that year. My temperature went up to 104.5. At this point you feel like you are in another world. I can honestly say that I thought I was just going to pass away in my sleep – just slip away. It took me a month to recover but I did and at my annual physical that December I was back in excellent shape (except for my antibodies). In February of 2020 I developed the flu yet again (verified not to be early COVID) and took me three weeks to get over that. Then we shut down because of COVID and have been following guidelines of social distancing, mask wearing and hand sanitizing. Guess who hasn’t been sick once with ANYTHING? Well, except allergies.
COVID did bring up some new points. What would happen if I should catch it? And once there was a vaccine – if I don’t make IgG – would it even work in me? Vaccines work with your antibodies and use the vaccine components as a “surrogate” for a pathogen so that the next time you come into contact with that pathogen – your body remembers it and goes after it fast. Because of these issues I decided to see where I was at with my antibodies. And I thought the best person to work with on this was an Immunologist – a specialist of the immune system.
I had a telemedicine consult with an immunologist and he saw my previous bloodwork from December where my antibodies were low. He gave me a formal diagnosis of CVID (not COVID) – Common Variable Immunodeficiency Disorder. So add another diagnosis to my history. It’s hard to not let your diagnoses define you. He also said to come in for a visit, we would talk and he would rerun more intensive bloodwork on me. I went in for the visit in person and we tested my immunoglobulins again. Some bloodwork was also to see if I had an antibody “remembrance” of previous vaccines. We started with tetanus.
But something else happened at the visit. He treated me as if I was the most delicate of flowers, that could disintegrate at any moment. He didn’t want me to take my mask down to look in my throat or nose for fear of me catching something. He wanted me to leave by the back entrance so I wouldn’t have to encounter other people and their “potential” germs. He told me I was prime for having a bad result from COVID, that I should be vaccinated, but he didn’t think that vaccine would work well in me. He also said that I would be the person to get a cold and end up intubated in the hospital. Or become septic from a cut. If he could’ve put me in a plexiglass bubble, he probably would’ve.
He also wanted me to start on immunoglobulin infusions monthly. These would be infused into my abdomen and he said this was very well tolerated. Depending on how my latest immunoglobulin tests came back (especially IgG) – maybe doing these infusions monthly and then getting to a good level and then seeing if we could back off. I could be on these for a few months, the rest of my life, or somewhere in between.
When I got back into the car after leaving through the back entrance, I read the side effects of this (well-tolerated) therapy and the first thing that pops up was a warning box – may cause blood clots, may cause brain swelling, may cause kidney damage, and on and on. Are you kidding me? How can I do this? Every month? I can’t.
The next week I had a biopsy of a spot on my face that has turned out to be a basal cell carcinoma. The dermatologist said that I will be more vulnerable to developing skin cancer as an immunocompromised person. Awesome. Those blistering sunburns as a child are coming back later in life.
So here I am the “invincible warrior” feeling more vulnerable than ever. Completely deflated. I beat a deadly cancer, only to feel like every possible thing could kill me that “normal” people would shrug off. Eat something bad and die of a bacterial infection. Cut myself and die of sepsis. Be near people and catch everything they may possibly have. Develop a secondary cancer. Catch a cold and die of pneumonia. COVID is surely a death sentence for me. Better hurry and put me in that bubble.
What some doctors need to understand is how to deliver news to patients, understanding how this news might affect them and not to break their spirit. I’m not saying to keep bad news from a patient – you must give them all of the information they need to make an informed decision. But there’s a way to do it, and maybe it’s an art form, where you deliver the news in such a way to empower the patient and not make them feel like all is lost. I remember when I was in the hospital having treatment – one of the lead oncologists on my team would tell me that they would NOT let me die. It might be rough, but I can make it through. I never forgot those words and they gave me hope that if I put in the hard work and didn’t give up that I will be OK. It’s really all I needed to hear. I put on my warrior hat and away I went. It was the fact that she gave me HOPE that kept me going and gave me something to work towards. It made all the difference in the world.
Word are powerful. They can be harming. They can be healing. We know this is true in everyday life under many circumstances. Now be a someone who has a serious illness and words can literally mean life or death to that person. Do they have hope that their situation can improve? Or do they feel discouraged and deflated, losing the will to put in the hard work they need to go through their experience and improve?
My latest bloodwork came back and my antibodies are disappointingly as low as ever. All of the natural means of trying to raise my antibodies have not worked yet and my body is not making them on its own. I will have some difficult decisions to make. I can watch and wait and be careful, I can get the immunoglobulin infusions, or I can search for other natural therapies that I haven’t tried yet. I will not be getting the COVID vaccine at this time since it has nothing to work with. And I am supposed to meet with the immunologist again soon to go over everything. I am going to go through the front entrance.
I have to mentally tap into everything I did when I was going through cancer treatment to get through this latest challenge. I will do this by telling myself all of the positives about my health, all of the areas where I am strong, and how sick I’ve been in the past – and although it took me longer – eventually recovered back to normal. I am a good weight, almost all of my blood chemistry is in the normal range with nothing alarming, I eat clean and take care of myself (although I’ve been under a lot of stress lately and that has affected me). I recently lost 2 beloved cats to cancer within 2 weeks of each other and I am still grieving for them. And we are in the process of moving….
I will become as educated as I can about my situation – even more so than I have been. Knowledge is empowering. I will get a second opinion about my CVID diagnosis and my options to remedy the situation. I will continue to take the goat colostrum that is supposed to seed the body with IgG in the hopes that it takes a while to “kick in” and will eventually start to raise my levels. I will raise the amount of protein in my diet – as another thing that we discovered is that my protein levels are borderline low – immunoglobulins are proteins and perhaps if I eat more protein in my diet perhaps I will give my body more “fuel” to make these immunoglobulins. As a vegetarian/almost vegan I could do better in eating enough daily protein. I will also go back to my Functional Medicine doctor to see if there are any other answers in my biochemistry that may give insight. I have more hard work to do but the hope that I can remedy my situation naturally without taking something with serious side effects is still there, and as long as I have that hope, I’m good.
Until my antibodies are at normal levels – I am more susceptible to infections than the average person. As COVID restrictions let up, I will still be that person who needs to live as if COVID is still a major threat. I won’t be able to do some of the things that others can do – eat inside a restaurant, go to a party indoors, go to a concert, travel, go anywhere where I can’t socially distance from someone. Some people don’t understand this because I appear “normal” and healthy. I’ve had people argue with me and say it’s no big deal or that people need to catch germs in order for their immune system to work. This too requires mental strength…
Wishing you good health and a great life – Sheryl
