I began Chemo for the second time in February 2020 after the reappearance of my Lymphoma. During the Thirteen months since then I have dutifully turned up to all of my appointments and been there while the pump has done it’s business, filling me full of all sorts of modified mustard gas or other evil concoctions. Mostly these treatments have been a breeze. Even the horrendous six day regime of drug after drug prior to my Auto stem cell transplant in November caused tolerable side effects. I thought of myself as strong and I thought others saw me that way as well.
Cumulative, what an interesting word. Ten letters that mean increasing or increased in quantity, degree, or force by successive additions. In my case the nurses and the doctor have been using it to explain what happens when they cannot stop chemo. The cumulative effect and the side effects this causes. In their ever challenging environment they are trying to get my lymphoma to the point were some form of treatment will lead to a positive result. So they are more interested in remission than the effects of chemo. Obviously I think it’s wonderful that they haven’t yet given up but the successive additions are beginning to cause their own issues.
One of the things that can be most effected by chemotherapy is the bone marrow. This vital part of the body ensures that your red, white blood and plasma cells are produced to the required levels. Even though my recovery from the stem cell transplant was rapid on the outside. Inside my bone marrow was slowly recovering to pre-chemo levels. When it became apparent that the transplant had failed and more chemo would be needed only sixty days had elapsed. Not sufficient to give an adequate base level for my cells.
In my last blog, were I was talking mostly about my mental state and feeling lost in the whole process. I briefly touched on the fact that I was about to have a transfusion and that my levels had plummeted after the first round of the new chemo. Since that blog I have become quite the regular visitor to the Cancer and Blood ward. Transfusion is my new middle name. With concerns around my bodies ability to reach the required levels it was important to ensure I was fit for round two of the chemo.
I did think about calling this blog “How low can you go?” A reflection of the yoyoing state of my red, white and plasma cell count. In the end a decision was made to delay the second of chemo for one week. Giving my body a bit of a chance to recover but also I felt a chance for my lump to spring back into prominence. There are so many mixed emotions around the lump under my collarbone. For me it’s the only visible sign of my lymphoma so it’s something I am acutely conscious about. I was sure that after about a week that the lump had reduced in size, making me very happy thinking finally something that worked. A few days later and I am back to seeing the lump. So until a definitive PET scan in a few weeks it’s really impossible to know what is really going on.
It’s not just the bone marrow that is suffering from the cumulative effects of chemo. Turns out that the physical symptoms such as fatigue are also cranking up their efforts to disturb life. With the second round of chemo administered I suddenly found myself in a place I have never been before. Yes I have been tired, I have been nauseous and had other side effects but these have always presented themselves individually. Suddenly like this massive tidal wave they all crashed over my body at once. I have never felt as wiped out as I did Saturday and sadly the situation just got worse as the weekend progressed. For the first time I actually said to Sarah that I had, had enough I was ready to give up! No more chemo!
For someone like me such an admission to myself was a major revelation of just what an impact treatment was beginning to take on me. I think a real turning point had been reached.
Monday, I think I must have slept at least two hours in the morning and even more in the afternoon. Just keeping my eyes open was becoming something of a major challenge. Thankfully all this sleep during the day wasn’t effecting things at night. At least the fatigue was consistent. Tuesday was to be more blood tests to ensure my body had recovered from the day one chemo ready for the day eight treatment. Arriving bright and early at the hospital (and awake) the blood test was quickly completed. Just a short wait for the results and then I could be home to catch up on more sleep.
Of course my blood levels had other ideas with my white blood cell count having gone missing in action. With a total level of just 0.64 (normal is between 4.0 and 11.0), not quite the lowest I have had it but getting close. Knowing that my counts wouldn’t recover in time for treatment on Thursday without some help the nurses consulted the doctors for advice. One thing you do learn in the hospital is patience and with my own specialist on holiday the initial referral was to one of the registrars. He wisely decided that he wouldn’t make the decision with consulting someone with more experience. So attempts were made to contact my specialist while I sat patiently in the waiting room. With that unsuccessful common sense prevailed and some 4 hours later they consulted with a consultant that was actually in the ward.
Very quickly a script was issued to the pharmacy for a growth hormone that can be injected and will stimulate white cell growth. Instructions were issued to return on Thursday so the day eight chemo could proceed. I virtually collapsed when I got home and slept for three hours recovering from the mornings efforts.
The rest of Tuesday and Wednesday passed in a blur, or perhaps more like sleepy dust. Those moments that I was awake were spent feeling increasing dread around the following days planned chemotherapy. I was now doubting my ability to bounce back and keep that positive attitude. Sitting in the chair, Thursday morning waiting for my results confusion was again about to reign. Although the injections had lifted my white cell count to an almost acceptable level my plasma count had dropped to forty.
Being an avid student of Dr. Google I had previously researched the protocols for administration of this regime and knew the plasma level was too low. What I didn’t know, was if they would artificially induce the levels by giving me a plasma transfusion. It turned out that they couldn’t and the day eight treatment was subsequently skipped. Now I have an interesting situation. Without more chemo in my system I have started to recover from the feelings a few days prior and although the fatigue is still there it’s beginning to lessen. On the other side of the equation without that chemo what are my nodes doing and how will this effect things.
The week ahead promises more blood tests and more visits to the hospital including a visit with the Psychiatrist later in the week so maybe a chance to get my head back on the straight and narrow. Then the following week depending on suitable blood test results the third round of chemo and all the dread that is already causing me.
3 thoughts on “Fatigue Takes Over”
I found this a very interesting read. I to have follicular lymphoma and have damaged bone marrow from chemo. Wishing you all the best
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I’m so sorry this is taking such a negative toll on you. All I can say is thank you for sharing and you keep doing what you need to do to get better, sleep it’s ok. This too shall pass
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You can’t give up because some of us who know lymphoma will return want to know what the real situation is like when our turn comes again and more aggressive treatment is required. Thank you for being honest and sending positive vibes and prayers
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