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We Have a Diagnosis

We Have a Diagnosis

So now I had an actual diagnosis – Mantle Cell Non-Hodgkin’s Lymphoma.

It explained a lot of things. It explained why I had weird rashes when my skin was exposed to cold temperatures. For years – doctors told me it was “idiopathic” and not much they could do and sent me off with an EpiPen. In reality it was my immune system going haywire because the cancer cells were not functioning as normal immune system white blood cells. They were mistaking temperature change in my skin for a harmful substance to be eradicated and releasing histamine. It also explains why I was becoming increasingly more anemic (the doctor said it was to having my period every month and typical of women my age). My WBC (White Blood Cell) count was climbing over the top of the range steadily each year over an 8 year period of time but was still under the 15K threshold when they send you for further testing. The doctors said it was probably due to a cold or allergies and it’s “just how you run”. So for many years – I WAS going for annual checkups and yet no one ever though to check me for lymphoma. Since I’ve finished treatment for my lymphoma – these issues have gone away…

Now that we had the diagnosis we had to see where the lymphoma was. So then it was testing time. I had a CAT scan, PET scan, colonoscopy, and an endoscopy. Fun times! As it turned out – most of the cancerous lymphoma cells landed in my spleen, which was enlarged to more than 3X it’s normal size. There were cancer cells throughout my entire bloodstream. A few cancer cells were found in my stomach, NONE in my colon – which was pretty amazing. Why I say that is because 70% of your immune system is in your gut – there is a significant amount of lymphoid tissue that lines the gut and so the fact that my cancer never landed there was pretty significant. As an aside – this is why colon health and balancing your gut flora (good/not so good bacteria) is of the utmost importance. Your immune system, which is mostly based in your gut, depends on a healthy gut to function properly.

Now that we knew where the lymphoma was and wasn’t – it was time for my plan, which had to be started right away. I was to have alternating cycles of chemo as an inpatient in the hospital for 4-5 days at a time. Each cycle was to be preceded the day or so prior by a biologic drug called Retuxin. Then I would have Cycle A and the 3 weeks later I would have Cycle B (which was the worst of the worst). These drugs had to be administered over time and carefully watched so I needed to plan to be in the hospital for 4-5 days each time. Then I could go home in between and “rest up” for the next round. It would take about 5 months for the whole process, if all went well. And THEN – I would need a stem-cell transplant. This would be the only way I would survive. I couldn’t think about that yet. I had to get through one day at a time.

Looking back I don’t know how I got through this. I think part of it was relief – I finally knew why I hadn’t been feeling well for so long. Part of it was shock. And part of it was a fighting spirt in me that didn’t want to die at 51 years old. When you are faced with a life-threatening diagnosis – you have to fight to live. The battle is a hard one and if you’re not “all in” – your chances are not as good. You really have to fight through the misery because it IS miserable. I told myself it was a work assignment. That for 5 months I was on this “special project” and when it was over I’ll go back to my normal life better than ever.

On March 14th 2015 – I began my treatment. Cycle A. It was a Saturday later in the afternoon and I was alone. My husband had gone home to take a break and get food for me for the evening. My friend had gone home. And then they come in with the Retuxin. Everything had to be administered through IV infusions. The nurse hooked me up and set the machine to drip it into me at a certain amount per hour. Then she left the room and I was on my own. After about 15 minutes I started feeling terrible. I had the chills and was shaking. My eye, that had the retinal hemorrhage, seemed to re-hemorrhage. I called the nurse and when she took my temperature it was over 103. My first 15 minutes into my first treatment and already I couldn’t handle it. Hw would I get through the next 5 months????

Now that I look back on it I can say what was happening in my body was fascinating. Because my cancer load was so high – there was so much to kill. The effects I was feeling was the Retuxin killing the cancer cells. It was a war going on in my body and the Retuxin was winning, although my body, the battlefield, was paying the price. The idea was then to drip the Retuxin into me more slowly over a longer period of time and the effects wouldn’t be as bad. So over 6 hours – it was administered. Slowly it dripped into me. This strange invader that was going to save me.

When my WBC count was evaluated afterwards I had already gone down from 240K to 140K just in that one treatment alone! So as miserable as I was, at least it was successful. Then the next day I was to start chemotherapy.

When the nurses administer chemotherapy – they wear protective gear – almost like HazMat suits. So they are protecting themselves against these drugs that that are injecting into your veins. The thought of this is really astounding. As someone who never liked to take medication – this really plays with your mind. I had to keep telling myself that I NEEDED these drugs for now – that they had a job to do because I was so sick – I’d die without them. I was GRATEFUL that I had these drugs available to me and that they would HEAL ME. I had to tell myself over and over again and BELIEVE THIS.

So the 2 different chemo drugs were given to me over the course of the next 3 days, over time. They frequently drew my blood to see check my white and red blood cells counts, hemoglobin, kidney function, liver function and electrolytes to make sure things were working and also to see if I became out of balance due to the treatment. And yes over time things would become way out of balance. Quickly. I was literally a biochemistry experiment. I was tested every few hours. The 2AM checks were always a favorite. The hospital is the WORST place to get any rest. I was exhausted from the whole ordeal, yet I had nothing to do but lay there and rest. My iPhone saved me – it was my link to the outside world, along with some TV. I had some visitors but encouraged most people not to come. I was miserable, uncomfortable and frankly didn’t want people to see me that way, nor did I feel like I could “entertain” people.

On the evening of March 18th– I was cleared to leave and go home. I was in the hospital for 8 days by that point. I didn’t feel great, but I was so happy to leave that I didn’t notice how not great I felt. This was an early birthday present to me as my birthday is March 19th. Unfortunately the protocol was that I had to return to the next morning at 9AM to the John Theurer Cancer Center for a shot of Granix – to boost my Neutrophil (a type of white blood cell) count. Oh well. At least I could leave the hospital, go outside and breathe fresh air and sleep in my own bed. I missed my cats terribly and couldn’t wait to see them again. They would be so instrumental in my healing…

In gratitude and health –


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