I was dreaming about flowers a few days before chemo was to begin the day after Christmas. It put the idea into my head that having flowers and beautiful music during the process might somehow make it easier. Maybe it would keep my thoughts flowing in a positive direction.
And I needed some encouragement because I was dreading "chemo" like I was going in to have something amputated. Those two C-letter words: chemo and cancer -- they strike such fear, don't they. The weeks preceding felt like I'd been shot out of an emotional cannon -- with none of the cool feelings of "flying" but just dread at not knowing whether I was going to land on a soft bush. Or splat.
Yet, I'm the one who moved up the day to December 25th; it was orginally scheduled for January 2nd. The lymph nodes in my chest were pressing on my lungs to such a degree it was getting very uncomfortable so I decided it was time. Past time, probably.
The second thing I decided was to change my thoughts from having "chemo" to: "I'm starting two new medications to help my immune system". That sounds a lot better, don't you think? Maybe even downright flowery.
So, the day after Christmas at 8 a.m., I was off to the infusion center. It was actually pretty nice there. Each little room had a sixth-story window, the chair was heated and reclined into many comfy positions, lots of guest chairs, there was wifii and cable tv, and I was waited on hand and foot. Five nurses to nine infusionees made that possible.
Unfortunately my nurse said the flowers couldn't stay because of potential allergies and reactions amongst patients there. But I still had the music and it was really nice to have (I took my computer to listen to Pandora).
Getting the IV in was a bit of a challenge. But I had decided against the two choices given me: either a picc line in my arm (prone to infection and trickey with showers) or a chest port (installed surgically and I just knew it would be poking me). I talked my doctor into not having either of those and just going with the regular old-fashioned IV infusion. Or at least try it that way.
So as the infusion nurse poked around painfully for a half hour, I just smiled patiently since this is what I had asked for. Finally a good little vein in my left hand was corraled into participating. Then through the IV, I was hydrated for an hour and given some anti-nausea, a steroid to reduce inflammation, and benedryl to minimize any allergic-type reactions. Already quite a few drugs even before the heavy-hitters were pulled out.
Unfortunately, I still got a reaction. After a smooth 30 minutes of the ritixumab (Rituxan), my lower back suddenly felt like I got hit with a baseball bat, with some other allergy-type symptoms. So the infusion had to be stopped several times while I was given yet more benedryl and steroids (a couple whopping doses of hydrocortisone) so my body could adjust to taking in the "mouse protein" -- which is what this monoclonal antibody is made from. With all that benedryl (same as in tylenol p.m.), it's amazing I never slept while I was there.
The Rituxan finally went in after many hours and stops and starts. I hoped the reaction wasn't a portent of things to come. The second drug, bendamustine, only took an hour to go in. By this time, I'd been there 10 hours! It was only supposed to be about 5 hours. But I was relieved the Rituxan worked out, since that one can be potentially very helpful in lymphoma. Rituxan goes in and targets the B cells in the immune system (that's where the cancer is in my case), killing off all of them, both good and bad, so that the body can regrow new ones. That's the plan anyway. (The name of the cancer I have is Non-hodgkins B cell follicular lymphoma).
All in all, it was a cartload of drugs for one day! I apologized profusely to my liver for all it was going to have to process. Then I went back the next day for one more quick round of bendamustine. Indeed, my liver ached heartily for 3 days.
Amazingly enough, the first days I felt quite well. No doubt, all the steroids kept me going for the second day as they tend to remove all inflammation but only temporarily. When it all comes back, you feel it. I also was supposed to have insomnia, for maybe a few nights but at least the first night. I slept just fine.
The third night I had nausea but mostly just some indigestion the first 5 or 6 days, which some DGL (deglycirrized licorice) fixes really well. The fourth day brought some distressing body aching, but it was also gone after a day and a half.
Every day, though, it was something a little different - like a box of chocolates. I didn't know if I'd get my favorite caramel almond one, or one of those mushy syrupy pink ones I had to sneak back in the box. I kind of wondered when things were supposed to get really bad. But they didn't, not really. Except for fatigue and some other strange and unpredictable sensations in my body and brain -- it has all gone quite well.
Several weeks before, as my doctor was prescribing the heavy-duty anti-nausea meds (that I knew I didn't want to take), I said to him: "Maybe I won't get nauseous." He paused and looked at me like he was thinking, "Is she an idiot, or just overly naive." He said, "Everyone gets nausea, and everyone gets fatigue."
The fatigue I definitely had. It wasn't crushing though, or overwhelming. I felt sensitive like I needed some peace and quiet, and irritable at times. Some days were better than others. After about a week, my energy improved every day. I was able to go for a walk most days -- kind of my barometer of how well things were going. Even the sores in my mouth the nurses were warning me about never materialized.
So, was it my secret weapons used for moving the drugs through? The flowers? The music? I also used a couple strategies to potentiate the new "medications", like hot baths afterward to keep my circulation moving. Coffee enemas greatly helped my liver and brain fog, infrared saunas with lots of fluid helped moved it all through and out, and select supplements kept things working well, like adrenal support which I"m big on. I had also prepared for the event by optimizing my Vitamin D (really really important even in lesser circumstances) and a few other things to help ease the way.
Now it's the 14th day after round one. I feel so relieved I got through it as well as I have - so far anyway. The main thing is I got through. I was so very worried about it. I go back for round two in exactly two weeks (on January 23rd), again for two days in a row. There'll be six rounds total.
And now some really good news! I went back yesterday for follow-up blood tests. Since lymphoma is a blood cancer, what's happening in the blood is always really significant and shows where things are going. With these two drugs, the white blood cells ("white count") usually drops low -- the lowest point is around the 14th day and then they work back up (hopefully).
Mine didn't drop -- they're still normal! This is huge news and shows that I still have some immunity (and the drugs didn't cause the dreaded "splat"). My doctor was surprised my bloodwork looked so good (my anemia even reversed itself), and thinks it's because I started out in such good shape. Also, some of the lymph nodes (the ones I can feel) have shrunk significantly. Best of all, the pain in my chest is gone (which means the large nodes there have shrunk too); I even stopped coughing right away. Amazing!
I've been told that successive treatments can get harder. In cases like these, I"m glad I like to question everything. So who knows? Maybe things won't get harder.
Thank you to all my amazing friends and family who brought food and flowers, phone calls, emails, rides, prayers and asking others to pray for me -- I appreciate you all so much!
And I needed some encouragement because I was dreading "chemo" like I was going in to have something amputated. Those two C-letter words: chemo and cancer -- they strike such fear, don't they. The weeks preceding felt like I'd been shot out of an emotional cannon -- with none of the cool feelings of "flying" but just dread at not knowing whether I was going to land on a soft bush. Or splat. Yet, I'm the one who moved up the day to December 25th; it was orginally scheduled for January 2nd. The lymph nodes in my chest were pressing on my lungs to such a degree it was getting very uncomfortable so I decided it was time. Past time, probably.
The second thing I decided was to change my thoughts from having "chemo" to: "I'm starting two new medications to help my immune system". That sounds a lot better, don't you think? Maybe even downright flowery.
So, the day after Christmas at 8 a.m., I was off to the infusion center. It was actually pretty nice there. Each little room had a sixth-story window, the chair was heated and reclined into many comfy positions, lots of guest chairs, there was wifii and cable tv, and I was waited on hand and foot. Five nurses to nine infusionees made that possible.
 |
| My dear friends brought me and flowers to the infusion center. It almost looks as if they have halos, doesn't it? |
Unfortunately my nurse said the flowers couldn't stay because of potential allergies and reactions amongst patients there. But I still had the music and it was really nice to have (I took my computer to listen to Pandora).
Getting the IV in was a bit of a challenge. But I had decided against the two choices given me: either a picc line in my arm (prone to infection and trickey with showers) or a chest port (installed surgically and I just knew it would be poking me). I talked my doctor into not having either of those and just going with the regular old-fashioned IV infusion. Or at least try it that way.
So as the infusion nurse poked around painfully for a half hour, I just smiled patiently since this is what I had asked for. Finally a good little vein in my left hand was corraled into participating. Then through the IV, I was hydrated for an hour and given some anti-nausea, a steroid to reduce inflammation, and benedryl to minimize any allergic-type reactions. Already quite a few drugs even before the heavy-hitters were pulled out. Unfortunately, I still got a reaction. After a smooth 30 minutes of the ritixumab (Rituxan), my lower back suddenly felt like I got hit with a baseball bat, with some other allergy-type symptoms. So the infusion had to be stopped several times while I was given yet more benedryl and steroids (a couple whopping doses of hydrocortisone) so my body could adjust to taking in the "mouse protein" -- which is what this monoclonal antibody is made from. With all that benedryl (same as in tylenol p.m.), it's amazing I never slept while I was there.
The Rituxan finally went in after many hours and stops and starts. I hoped the reaction wasn't a portent of things to come. The second drug, bendamustine, only took an hour to go in. By this time, I'd been there 10 hours! It was only supposed to be about 5 hours. But I was relieved the Rituxan worked out, since that one can be potentially very helpful in lymphoma. Rituxan goes in and targets the B cells in the immune system (that's where the cancer is in my case), killing off all of them, both good and bad, so that the body can regrow new ones. That's the plan anyway. (The name of the cancer I have is Non-hodgkins B cell follicular lymphoma).
All in all, it was a cartload of drugs for one day! I apologized profusely to my liver for all it was going to have to process. Then I went back the next day for one more quick round of bendamustine. Indeed, my liver ached heartily for 3 days.
Amazingly enough, the first days I felt quite well. No doubt, all the steroids kept me going for the second day as they tend to remove all inflammation but only temporarily. When it all comes back, you feel it. I also was supposed to have insomnia, for maybe a few nights but at least the first night. I slept just fine.
Every day, though, it was something a little different - like a box of chocolates. I didn't know if I'd get my favorite caramel almond one, or one of those mushy syrupy pink ones I had to sneak back in the box. I kind of wondered when things were supposed to get really bad. But they didn't, not really. Except for fatigue and some other strange and unpredictable sensations in my body and brain -- it has all gone quite well.
Several weeks before, as my doctor was prescribing the heavy-duty anti-nausea meds (that I knew I didn't want to take), I said to him: "Maybe I won't get nauseous." He paused and looked at me like he was thinking, "Is she an idiot, or just overly naive." He said, "Everyone gets nausea, and everyone gets fatigue."
The fatigue I definitely had. It wasn't crushing though, or overwhelming. I felt sensitive like I needed some peace and quiet, and irritable at times. Some days were better than others. After about a week, my energy improved every day. I was able to go for a walk most days -- kind of my barometer of how well things were going. Even the sores in my mouth the nurses were warning me about never materialized.
So, was it my secret weapons used for moving the drugs through? The flowers? The music? I also used a couple strategies to potentiate the new "medications", like hot baths afterward to keep my circulation moving. Coffee enemas greatly helped my liver and brain fog, infrared saunas with lots of fluid helped moved it all through and out, and select supplements kept things working well, like adrenal support which I"m big on. I had also prepared for the event by optimizing my Vitamin D (really really important even in lesser circumstances) and a few other things to help ease the way.
Now it's the 14th day after round one. I feel so relieved I got through it as well as I have - so far anyway. The main thing is I got through. I was so very worried about it. I go back for round two in exactly two weeks (on January 23rd), again for two days in a row. There'll be six rounds total. And now some really good news! I went back yesterday for follow-up blood tests. Since lymphoma is a blood cancer, what's happening in the blood is always really significant and shows where things are going. With these two drugs, the white blood cells ("white count") usually drops low -- the lowest point is around the 14th day and then they work back up (hopefully).
Mine didn't drop -- they're still normal! This is huge news and shows that I still have some immunity (and the drugs didn't cause the dreaded "splat"). My doctor was surprised my bloodwork looked so good (my anemia even reversed itself), and thinks it's because I started out in such good shape. Also, some of the lymph nodes (the ones I can feel) have shrunk significantly. Best of all, the pain in my chest is gone (which means the large nodes there have shrunk too); I even stopped coughing right away. Amazing!
I've been told that successive treatments can get harder. In cases like these, I"m glad I like to question everything. So who knows? Maybe things won't get harder.
Thank you to all my amazing friends and family who brought food and flowers, phone calls, emails, rides, prayers and asking others to pray for me -- I appreciate you all so much!
