I’m sitting here in the medical day unit having an infusion, surrounded by five others having chemotherapy and cancer related treatment, just two days after Christmas. All ages, males and females, various stages of disease and all kinds of emotions are around me.
The oldest lady in the room is laying with her eyes closed, grey in colour with a vomit bag in front of her, along with four bags hanging from an IV. The next gal is working on a crossword whilst her chemo infuses, looking gorgeous in her colourful scarf wrapped perfectly around her head. There is a gentleman across from me who is now receiving platelets, but unfortunately got his chemo days mixed up and has to return again in three days. His Ipad every now and then projects a you tube video (volume HIGH) to which he laughs and we all join in. It breaks the difficult air in here.
I'm next to the window and its a hot sunny day. There are all kinds of trees outside and they look painted on the bright blue backdrop of the sky. There are jasmine flowers blossoming white and Christmas music plays over head. Its a bright and cheerful room and the natural light is a godsend. I sit here every few weeks and always try to get this chair for the afternoon or the day, its my favourite and I can often feel like a bystander, rather than a patient.
The two next to me are having their first day of chemotherapy. My heart aches for them. Both of them have lymphoma, one next to me completely in disbelief as he feels so healthy and only has one lymph node enlarged in his neck. I talk to him and tell him I've been in his chair and that it will be ok. He doesnt believe I've had the same chemo, but I reassure him I have. The other smiling and seemingly prepared; she reminded me of how I felt my first day July 2, 2018.
She is having her first treatment of Rituximab today (one of the agents I was administered as part of my chemotherapy regimen last year). As the nurse runs through potential side effects of the medication and the fact it would burn going into her arm, how it could make her feel - I can't help but be taken back to the very day I had all of this information relayed to me. It’s been such a long road; I just want to go over and hug her, tell her she will get there. It won't be easy and some days will feel like a cruel dream. There will be times she will lay having drugs infused into her veins and wonder how this is her life, but it is and she will come out on the other side of her treatment the same person she went in, except with so much fortitude and strength in addition.
It hasn't been an easy few months for me, but there have been absolute moments of joy too. The highs included growing our family by way of adopting an adorable puppy, continuing to work and making a return to running half marathons. Oh let me tell you, it felt better than anything to cross the finish line of a half marathon, feeling ecstatic and free. It felt like I broke out of what I can only call an incarceration of my body, whilst my mind had always been prepared and willing. The return to running longer distances was quickly followed by three hospitalizations that left me questioning. Everything.
I had never been told to stop running or slow down by any specialists involved in my care and on the contrary, had always been told to run as I felt I could, especially because of its impact on my well being. It instills so much joy for me and is truly my greatest release. After yet another infection, I was faced with making changes to my running and my approach to what I love most and adjusting the path to my recovery in order to do just that.
I’ve found myself feeling so much guilt these past couple of months. Guilt about inconveniencing so many people around me when I got continually admitted to hospital, guilty for those who again worried about my survival as I lay in a hospital bed with fevers and rigors and more guilt feeling as though I shouldn't have run in the race that meant so much to me.
To add to this, I was switched over to home Immunoglobulin (Ig for short) replacement infusions two weeks ago (from hospital based IV infusions, in order to try and have less infections and improve quality of life). When I went to the lab to pick up the Ig replacement, the lab gave me two months worth, to which I felt uneasy about – knowing once it is released it could not be reused. What if something went wrong? All of those donors who gave their time and blood for this product...
I tried so hard to make this work at home, inserting a large bore needle into my abdomen in not one, but two sites, as I cried in pain. I've injected a lot of medications and products into my abdomen these past couple of years (blood thinners, IVF drugs, bone marrow stimulants etc) but this was just cruel punishment. I can't describe it another way.
As the needle lay inserted into my abdomen, I sobbed. How had it come to this? Wasn't this supposed to be better than IV therapy? It took me an hour and fifty-one minutes to figure out how to work a syringe driver to actually infuse the meds. The oncology nurse thought I could figure it out and I had hoped so too, but it was a tricky contraption! It was Friday night – I was at home, without anyone to call and you tubing every video I could find, talking to the nurse at my work and slowly figuring it out. It wasn't my finest Friday night.
The Immunoglobulin began to go in and once 6mL of the necessary 40mL had gone in, I lifted my shirt and noticed a huge, painful palpable lump. The drug wasn't even being absorbed and it was sitting just under the surface of my skin. Not sure what to do, I boldly put another needle into the other side of my abdomen and began to infuse at another site, not wanting or willing to let this precious therapy go to waste. By this point in time, I was crying uncontrollably and I can say it was mostly out of feeling like a failure.
Things weren’t going well. I now had two huge and painful lumps taking up my abdomen and half a syringe left of liquid gold from pooled plasma donors. I just couldn't go on and once Monday came, the nurse called to check in and we opted to try it again in my abdomen at hospital – perhaps I did something wrong with the infusion and I could be supervised if this went sideways again.
Take three of infusing a week later reiterated that my body was not absorbing the Ig and it was pooling beneath my skin causing localised reactions. We tried my abdomen and the base of my back – again, two more reactions, then aborted.
I felt so much guilt. Why couldn't I do this? All of these amazing donors had given blood and/or plasma so I could receive this treatment and now it was all of no use.
I was visibly upset and the nurse sat with me trying to ease my burden. She said as a donor, she wouldn't want to see someone go through what I was enduring, just to use the product. I realized that what she said was true. Despite my best efforts and intentions to perform the infusion at home, there was another plan for me.
We can choose to experience guilt in many ways and we can carry a heavy load on our minds and in our hearts - that is up to us as individuals. As the wise nurse reiterated, sometimes it is not in our best interest to put added and undue stress on ourselves in such situations. I chose to reach out to a local organization and try to donate my Immunoglobulin replacement to someone who may need it in an underprivileged country. overseas.
I hope that the inability for my body to utilize this product as a subcutaneous infusion now lends the opportunity for another to have this treatment that could potentially and dramatically improve their well-being. That's how Im unloading the heaviness of my guilt and turning it into a much more manageable state of mind. Today, thats enough to warm my heart.