I sailed through my three-month lymphoma follow-up -- blood work looking good and the rest of me doing okay. That was the end of October.
Unfortunately, there were a couple rips in my sails. The main one was having gotten several flu viruses since the beginning of September and one in October. Then the night of my follow-up visit, I suddenly got really sick with what seemed like pneumonia. Then my sails started flapping in the wind!
If I knew more about sailboats and sailing, I'd add a few more analogies here...but I don't, oh well. So I"ll just say that with two more relapses of the pneumonia thing in November, which didn't show up on chest x-rays, it was time to consult my oncologist. Who immediately recommended a CT scan of my chest to illuminate things.
This revealed the other ripped sail -- those enlarged lymph nodes in my chest, between my lungs and next to my heart that were already a little too big at my diagnosis in July. They had grown! Significantly, it turns out, and were pressing on my lungs creating a pneumonia-like situation.
Within an hour of the CT scan, my oncologist's office was calling me to come in right after Thanksgiving. When your doctor starts calling, it's rarely good news, right? This leads me to yesterday. The cancer has progressed (grown), and the lymph nodes are now interfering with my lung function, so he announced that not only was it time for chemo, but also that "you have no choice".
You have no choice. Four little words that I dread in a really big way. All my life since the age of being able to make choices, I've prided myself in that ability. Freedom is one of my most prized possessions you see, so suddenly being faced with the possibility of "no choice" -- well, yesterday was not one of my prettiest days. I could barely eat all the while thinking I should probably be fattening myself up for the days to come! I have to say here though, that yesterday two different friends brought me beautiful soups, out of the blue, when I had nothing planned to eat. I"m so grateful for that!
Then last night when I started to realize that I, indeed, do have choices. I don't know what they all are just yet. But even if it amounts to choosing between an arm "picc" or a chest "port" under the skin (little contraptions installed in your veins for six months to make it easier to give chemo intraveneously...), then maybe I"ll choose neither! The chest port has to be installed surgically, and the arm picc has to be saran-wrapped for showers, is prone to infections, and requires an extra weekly visit for flushing. So maybe I"ll refuse both of them and ask for a brand new puncture site every time I go. Oh yes, I plan on becoming a bit of a challenge to my oncologist. I can't wait.
I got opened up to the possibility of "choices" after receiving an impromptu "healing" last night. Come to think of it, it wasn't impromptu, I asked for help. From any spiritual entities or teachers or ancestors -- anywhere out there. I immediately started getting insights on some things I need to start doing, like visualizations for healing, daily toning (a kind of chanting type singing) and meditation. I kind of forget to do some of these things under stress so it was immediately very calming.
Then being the practical person I am, I immediately signed up for more health insurance today. And that kind of summarizes me in a nutshell -- the artistic healer and practical scientist. It's a very interesting combination for sure.
So while I"m deciding what all choices I might have (such as not having chemo at all, or agreeing to take only one of the chemo drugs, or refusing to take all or even some of the extraneous drugs they give you on top of the chemo -- like steroids, antibiotics, and on and on) -- here's what I"m faced with.
My doctor wants me to have two drugs for not just a couple months but SIX months! I would have to be on constant antibiotics and anti-virals to prevent infections because chemo reduces the immune system even more. Turns out, I'm already considered "immunocompromised" just having lymphoma (because the cancer is in my immune system).
One of the drugs -- ritixumab (or Rituxan) is a monoclonal antibody, and therefore not technically a chemo drug. It basically kills my B cells, both those with cancer and those without, so my body has to grow back a new batch of B cells (that have important immune functions). So the result is my immune system will be lowered more, and then hopefully strengthened after the ordeal is over.
The second drug is called bendamustine (or Treanda) and is a true chemo drug. It has lots of side effects and I don't even want to think about all the details just yet. Both of these drugs together have been shown to be 50% more effective in keeping the cancer from progressing. I've read and researched as much as possible so far (it's overwhelming), and it's at least comforting to know that my oncologist is completely on top of the latest and best.
Now here's the clincher for my type of cancer. You'd think it's a great idea to finally go in and just blast out all the cancer, right? Well, that doesn't happen here with follicular lymphoma. This type of slow-growing (or indolent) cancer is considered incurable; it's unblastable. The strategy is to keep it under control, send it into remission, and hopefully keep it from progressing again.
But when chemo starts the first time, it begins what could be (and often is) an endless cycle of chemo, remission, progression, more chemo, more remission, more progression, and so forth. And hopefully I would get two or more years of remission before the next cancer progression.
If that isn't odd enough, here's something else that has to be considered. We're talking strategies here. Because when it's time for a second round of chemo (a couple years from now?), the same drugs can't be used again. It has to be different drugs, usually stronger drugs. And then if those "fail" or for the next progression (which is a nicer word, don't you think?), then bigger guns are pulled out. Like radioimmunotherapy. Or bone marrow transplants. This cycle I just described could take 5 years. Or 10. Or wtih luck -- 20.
So it's probably time to start looking for the silver linings. One thing is for sure, the support and love I've been receiving from friends and family near and far warms my heart to such a degree I can overlook some of the difficult decisions that are weighing so heavy on me.
Also, for many in my situation, their lymph nodes start to decrease immediately with chemo. So for me right now, that could mean the hard-pressing billiards ball in my chest might even go away. That might be kinda nice, for starters.
Note: if you'd like to receive automatic email updates about my situation, please click on "get email updates" at my blog: www.thepathofcancer.blogspot.com
Thanks for listening,
Adele
Unfortunately, there were a couple rips in my sails. The main one was having gotten several flu viruses since the beginning of September and one in October. Then the night of my follow-up visit, I suddenly got really sick with what seemed like pneumonia. Then my sails started flapping in the wind!
If I knew more about sailboats and sailing, I'd add a few more analogies here...but I don't, oh well. So I"ll just say that with two more relapses of the pneumonia thing in November, which didn't show up on chest x-rays, it was time to consult my oncologist. Who immediately recommended a CT scan of my chest to illuminate things.
This revealed the other ripped sail -- those enlarged lymph nodes in my chest, between my lungs and next to my heart that were already a little too big at my diagnosis in July. They had grown! Significantly, it turns out, and were pressing on my lungs creating a pneumonia-like situation.
Within an hour of the CT scan, my oncologist's office was calling me to come in right after Thanksgiving. When your doctor starts calling, it's rarely good news, right? This leads me to yesterday. The cancer has progressed (grown), and the lymph nodes are now interfering with my lung function, so he announced that not only was it time for chemo, but also that "you have no choice".
You have no choice. Four little words that I dread in a really big way. All my life since the age of being able to make choices, I've prided myself in that ability. Freedom is one of my most prized possessions you see, so suddenly being faced with the possibility of "no choice" -- well, yesterday was not one of my prettiest days. I could barely eat all the while thinking I should probably be fattening myself up for the days to come! I have to say here though, that yesterday two different friends brought me beautiful soups, out of the blue, when I had nothing planned to eat. I"m so grateful for that!
Then last night when I started to realize that I, indeed, do have choices. I don't know what they all are just yet. But even if it amounts to choosing between an arm "picc" or a chest "port" under the skin (little contraptions installed in your veins for six months to make it easier to give chemo intraveneously...), then maybe I"ll choose neither! The chest port has to be installed surgically, and the arm picc has to be saran-wrapped for showers, is prone to infections, and requires an extra weekly visit for flushing. So maybe I"ll refuse both of them and ask for a brand new puncture site every time I go. Oh yes, I plan on becoming a bit of a challenge to my oncologist. I can't wait.
I got opened up to the possibility of "choices" after receiving an impromptu "healing" last night. Come to think of it, it wasn't impromptu, I asked for help. From any spiritual entities or teachers or ancestors -- anywhere out there. I immediately started getting insights on some things I need to start doing, like visualizations for healing, daily toning (a kind of chanting type singing) and meditation. I kind of forget to do some of these things under stress so it was immediately very calming.
Then being the practical person I am, I immediately signed up for more health insurance today. And that kind of summarizes me in a nutshell -- the artistic healer and practical scientist. It's a very interesting combination for sure.
So while I"m deciding what all choices I might have (such as not having chemo at all, or agreeing to take only one of the chemo drugs, or refusing to take all or even some of the extraneous drugs they give you on top of the chemo -- like steroids, antibiotics, and on and on) -- here's what I"m faced with.
My doctor wants me to have two drugs for not just a couple months but SIX months! I would have to be on constant antibiotics and anti-virals to prevent infections because chemo reduces the immune system even more. Turns out, I'm already considered "immunocompromised" just having lymphoma (because the cancer is in my immune system).
One of the drugs -- ritixumab (or Rituxan) is a monoclonal antibody, and therefore not technically a chemo drug. It basically kills my B cells, both those with cancer and those without, so my body has to grow back a new batch of B cells (that have important immune functions). So the result is my immune system will be lowered more, and then hopefully strengthened after the ordeal is over.
The second drug is called bendamustine (or Treanda) and is a true chemo drug. It has lots of side effects and I don't even want to think about all the details just yet. Both of these drugs together have been shown to be 50% more effective in keeping the cancer from progressing. I've read and researched as much as possible so far (it's overwhelming), and it's at least comforting to know that my oncologist is completely on top of the latest and best.
Now here's the clincher for my type of cancer. You'd think it's a great idea to finally go in and just blast out all the cancer, right? Well, that doesn't happen here with follicular lymphoma. This type of slow-growing (or indolent) cancer is considered incurable; it's unblastable. The strategy is to keep it under control, send it into remission, and hopefully keep it from progressing again.
But when chemo starts the first time, it begins what could be (and often is) an endless cycle of chemo, remission, progression, more chemo, more remission, more progression, and so forth. And hopefully I would get two or more years of remission before the next cancer progression.
If that isn't odd enough, here's something else that has to be considered. We're talking strategies here. Because when it's time for a second round of chemo (a couple years from now?), the same drugs can't be used again. It has to be different drugs, usually stronger drugs. And then if those "fail" or for the next progression (which is a nicer word, don't you think?), then bigger guns are pulled out. Like radioimmunotherapy. Or bone marrow transplants. This cycle I just described could take 5 years. Or 10. Or wtih luck -- 20.
So it's probably time to start looking for the silver linings. One thing is for sure, the support and love I've been receiving from friends and family near and far warms my heart to such a degree I can overlook some of the difficult decisions that are weighing so heavy on me.
Also, for many in my situation, their lymph nodes start to decrease immediately with chemo. So for me right now, that could mean the hard-pressing billiards ball in my chest might even go away. That might be kinda nice, for starters.
Note: if you'd like to receive automatic email updates about my situation, please click on "get email updates" at my blog: www.thepathofcancer.blogspot.com
Thanks for listening,
Adele
Wow, Adele, I really had no idea that all of this was going on...after the email you sent me the other day, I think you're doing the best you can with what you've got. Being the hippie nurse that I am...a contradition in terms, I understand...I would like to know if you've stopped eating grains? If I can give one piece of advice, that's it...ALL grains, including corn. Cancer loves sugar and the kind from grains is its favorite. If possible, stick with HIGH quality meats, organic fruit, veggies, nuts, eggs (pastured), and HEALTHY fats...canola oil is NOT a healthy fat. Coconut oil is, no matter what you've heard. I've heard stories of people with cancer going on what's called a "ketogenic diet" which is VERY low carb...like, no carb. I'm not sure about that one, but if it's something you're interested in, look into it. Okay, this got long...sorry. I feel the need to tell you everything I know now!
ReplyDeleteWell, Tara, you and I are definitely on the same track! Why doesn't that surprise me. :-) I went gluten-free a few years back and soon after went grain free. I still am. I occasionally indulge but not on a daily basis. Mostly Paleo. It just feels better to eat that way, doesn't it. Most grains are GMO nowadays and toxic anyways. And please -- tell me everything you know!
DeleteI almost forgot...IF you decide to do treatment (and it's YOUR choice), that mediport is your best bet. I deal with PICC lines every day. You think YOU'RE a pain in the ass? No, sweet lady, a central line outside of your body is a pain in the ass. I don't think a peripheral line inserted each time is even an option...the drugs are caustic. It sounds like you're well informed, I just wanted to add that, just in case. :)
ReplyDeleteThanks for the info on the PICC line. I pretty much decided I didn't want the PICC line hanging off my arm, prone to infection and all. And....I may decide against the "mediport" surgically implanted in my chest as well. Yes, still the rebel. I have an online buddy in London who just started his chemo last week -- through his hand! I know the drugs are toxic and caustic. But will a little 2-3 inch hose attachd to the PICC line or mediport keep it from being caustic? I wonder. Also, I"m not elderly and I have good veins. For now anyway. So, I"m still mulling this one, should the time come (in January), which is soon.
Delete