What's Next

This is the beginning of the end.

I promised I'd be honest on the blog, so I'm getting down to some areas that might count as Too Much Information for some readers. What posts I can manage to write from here on in will sometimes be dealing with physical information that may be more graphic than sensitive people might be comfortable reading.  Some posts may be more emotionally difficult to read, for those who have either befriended me over the course of this journey, or those who tend to empathize deeply.  I'm not sure how much I'll have the energy or time to write, or whether I'll be able to focus enough to make sense at all times, but I will do my best.  

There are some signs that I may have cancer cells in the fluid of my meningeal lining.  We will need a lumbar puncture to find out, and then if it is positive for cancer cells and if I want to treat it, they would put chemo in the meningeal lining - theoretically not a lot of side effects, and if there is cancer there, that could be causing some of the muscle weakness and numbness, and the chemo could help maintain what is left of function there.  Or I may have subtle tumors in my spinal column that aren't yet big enough to really show up on the scans yet, and given my sensitivity to subtle changes in my body, I could be reacting to them earlier than most people would.  More on that in a bit.

What does show are a couple things.  One is that the hip tumor has gotten a lot bigger in the last month, and the other tumors are either stable or growing.  Another is that there are small but important tumors blocking the nerve sheaths in the bottom of my spinal column - from my lower back to the bottom of the tailbone.  Basically L5 is an issue.  This is what controls the legs from the knee down in the front, and most of the back of the legs, plus the 'saddle' area - all the area that is covered by a bikini bottom - so it would affect the bowel and urinary continence stuff.  All of which has become an issue for me.  Doesn't affect the upper stuff that I am also having issues with (thus the 'subtle tumors'/meningeal lining questions), but at the moment these are less of a concern than the continence and being unable to walk/stand.

So.  Unfortunately the hip tumors/lymphedema/DVT issues masked the cause of the foot drop on the left side, because once the paralysis has been well established, it cannot be reversed.  However, radiation can (if the patient is lucky) reverse the paralysis if caught in the first few days.  So they are hoping that radiation to that area of the spine will allow me to keep enough strength on the right side that I will be able to stay continent for at least a while, and be able to get to a commode/bathroom on my own or at least with reasonably minimal assistance.

It is unfortunate that we did not have this information prior to making the decision re Gamma Knife - certainly I feel that some of my fatigue and lack of focus, and perhaps even my balance and weakness issues, comes from the Gamma Knife treatment, and if Dr. Bouncy is correct with my timeline, I don't think the prognosis would be significantly different had I not had it.  And even if it had, in terms of that little bottom tumor swelling up and causing massive organ failure, it might have ended up being a quicker and kinder death than that with which I am now faced.  

There are, of course, issues with the radiation.  One is side effects.  With radiation there is always the fatigue factor, which varies from patient to patient.  I didn't have too much fatigue with my first round of radiation (to my hips), but I was taking Low Dose Naltrexone at the time, which gave me a lot better pain tolerance and much more energy than I have now. I'm already having a lot of fatigue - and thus also less strength/more weakness - just from the cancer, so adding to this is a big consideration.  This would be my second round of radiation, so my guess is that to some degree these things tend to be cumulative, even if there isn't a lot of overlap between the radiation to the hip and radiation to the spine.  Since this is the lower spine, there may be some overlap in my case.  More complicating factors, in my experience, equal more side effects.

Another consideration is that with the lower spine, there is lower intestine exposed to radiation, and the lower intestine is an area very prone to radiation damage - so there could be a continence issue for a week or so after the 5-course/5-day radiation program they are suggesting.  Bedpans cut right into the hip tumor, making them a messy and a painful option... and 'adult diapers' would be lymphadema-inducing and not great for the skin, along with not being the most pleasant and dignified option in the world.  

If we did the lumbar puncture/spinal chemo option, it would have to be after the radiation was done, so between them they would take up a couple weeks of treatment.  They would, however, count as palliative rather than curative treatments, so they can be done while counting as a hospice patient - which in our case means access to more equipment and services being made available by insurance.  Whether I get the lumbar puncture will probably in part be determined by what sort of improvement I do or do not see after the radiation treatments.

All of this is very complicated as far as trade-offs, because according to Dr. B, I've probably got somewhere between 4 and 8 weeks left on me.  And of course, although we can't know for sure exactly what is going to happen, some portion of those weeks will be pretty much spent comatose/sleeping, and some portion will be spent actively suffering and dying.  Once I'm out of the hospital, most of those weeks will need to be spent in a hospice or nursing facility, due to the more extensive nursing/caretaking needs that this paralysis and weakness are causing.  

I would prefer a hospice facility if at all possible, due to them generally having more experience with the palliative and emotional needs of younger patients with cancer-caused symptoms and death - which are often significantly different than the needs of those dying with the symptoms connected to old age.  

It would have been helpful to get more info from Dr. Bouncy, which we were told we were going to get this afternoon, but then the world sort of exploded in clouds of doctors and therapists all at the same time, all demanding priority time and none getting to give me anything near a full accounting, and Dr. B somehow never showed up for our consultation... and the first radiation dose is happening early in the morning, since waiting any longer to start treatment would make the damage more likely to be irreversible.  

Unfortunately, the radiation machine turns out to be excruciatingly painful.  I had about 10 minutes on it today while they targeted it, and ended up crying from the pain of my leg and hip/sitzbone tumor... the table has NO padding, and they have to twist my legs up in what turns out to be a joint-and-tumor torturing position that I am afraid I will not be able to endure for the 30-minute treatment they are promising me each day.  I haven't cried for any of the other chemo or radiation treatments, even the chemical burn or the mis-screwed head/faceplate.  This was really serious pain.  They are going to try to see if they can find some sort of pain killers that will help, but we aren't too sure what will work...

So I have decided to try the radiation treatment, at least for one dose, in hopes that keeping some limited mobility and strength on my right side will improve my quality of life for the following few weeks.  Assuming that we can actually do it, given the overlap issue with the previous radiation treatments.  Hopefully I will have more time to talk to Dr. B and the radiation specialist between the first and the next doses, and also a better idea of whether the pain factor can be limited a bit better somehow.  

Again, these issues are in part due to the swiftness with which this end stage often hits those with metastatic breast cancer.  It is axiomatic that it is more common than not that people start hospice care preparations too late to be able to take advantage of what hospice care has to offer - and certainly I would consider myself to count among this population.  It is very difficult to make life-and-death decisions and preparations in the midst of a fast-moving crisis, especially one in which there are a number of variables and unknowns, and a fair number of people whose lives will be affected by the outcome.  

I will report more tomorrow, I hope.  I have dozed off several times during the writing of this post, and it is late, and I have an ordeal to look forward to in not too many hours.  

Wish me luck.


Delighted Hands said...

Praying for some respite....hoping the discomfort will be at a minimum.

Anonymous said...

Eileen, I hope they can find a way to deal with the pain and discomfort in a way that gives you the dignity you deserve.

FeistyScribe said...

I love you. I needed you to know that.

Nancy K. said...

I pray that the radiation that you can endure is enough to give you the strength & mobility you need to make things a tiny bit better for you.

Thank you for sharing your journey with us, Eileen. I hope that you know you are helping a lot of people to be better prepared for facing similar situations themselves or with loved ones. The knowledge you have imparted is priceless! I hope that it somehow helps you to write down what is happening and what the 'plans' are. You seem so factual and objective ~ yet I can't help but wonder what you are feeling. I suspect that I would be afraid. And angry. And very, very sad. I'm so glad that you have your family with you to comfort you during these difficult days. I hope you can feel their love that you know that God is with you and that much better things await you when you are finished with your mortal body.

I have come to love and respect you over the past few years, Dear Lady. I regret that we never got together. Let that be a lesson to me! :-(

Do you have a favorite song?

Praying that you sleep peacefully tonight and that tomorrow goes better than you expect!

Eileen said...


Thank you for your comments on my blog for these past few years - your friendship has meant a lot to me, even though we were never able to connect face-to-face (isn't that funny, even though we've both been to Shepherd's Harvest?...) It's been an inspiration to see you struggle and thrive through bouts of hard times and good, and I've so enjoyed being able to see and hear about *all* your babies, both human and animal. Never doubt that there is value in sharing your thoughts, knowledge, experience and love with the world - you are a treasure!!

I do love music of many sorts, so I don't know that I have a favorite song or artist. I do know that at my memorial I would like to have 'Wanting Memories' played - my son's choir used to sing it, so it is meaningful to me (you can find a reasonably nice version of it on YouTube, sung by Sweet Honey In The Rock).

I feel so lucky to have my family and friends around me, either in person or over the internet - people say that the internet interferes with human connection, but I certainly haven't found that to be the case. I don't know what I would have done without my cyber-friends this past few years! You've been a source of comfort and inspiration, of knowledge and of joy. Sometimes I need to be reminded that there's another world out there that keeps spinning on regardless of our little troubles and crises... being with you and my other blogging friends can be such a wonderful break from my own life when I start feeling sorry for myself.

Well, off I must go to the next radiation treatment - but I wanted you to know what a blessing you have been to me, and continue to be as I go through this next step in my journey. You are loved, you are loved, you are loved!!