My primary, local, oncologist is on vacation this week. Sort of a rough time for me for her to be gone, as my lymphoma relapse has been progressing pretty quickly. I did have a meeting with her scheduled today, so it was fielded by another doctor in her office. This is not a doctor with whom I have good repport, and this visit did not go very well either. He did let me know that the biopsy came back showing lymphoma, which everyone has been expecting. The problem was working with him to map out a plan of treatment. I had been told that the earliest I could get in for radiation would not be until July 27th, and that would be for the pre-treatment consultation, which he confirmed. Dr. Meehan had recommended that I go back on a mega-dose of Prednison, which is a steroid; I just finished tapering off of it last week, from my earlier bout of graft vs host disease of the liver. He said that should start having an effect within a few days.
My concern was, what if it doesn't? What is plan B? He said there was no plan B, that I would go on the prednison and then in a couple of weeks, get radiation. I maintained that I wanted to work out a plan B, because my lymphoma was progressing rapidly. Last week I had a little trouble breathing if I was laying down, but this week, it has progressed to the point where I have to put enough pillows under me such that I am at a 30° angle or so, in order to breath. In two weeks, it is conceivable that I will have trouble breathing if I am at a 90° angle. Then what? I will be dead. Before they start the actual radiation.
His solution? Take the prednison and see if it helps. If it doesn't help, we can stick a tube down your throat. I tried to explain that I didn't think that a tube would help, because it is my understanding that I am not having trouble breathing from constriction of the throat, but because the lymphoma is pressing down on the Vagus nerve, which (among other things) controls the diaphragm. He told me "Nothing more can be done." Which is clearly not true. Even if he believes that I am worried for nothing because the prednison will take care of it, there seems like there are better ways to help relieve my stress. As I said, I have poor rapport with this man.
So, after I got out of there, my plan was going to be to call Kate, one of the nurses in Dr. Meehan's office, and I knew that she would make sure that I was taken care of, even if I had to check into the emergency room at DHMC in order to get radiation sooner. I did not call her immediately, however, as I had a 1:30 appointment with Dr. Godwin, the radiologist, and I would know for sure what my radiation schedule would be.
There is the initial consultation, where you meet the doctor, and come up with a plan for your case. This does not even happen at the treatment center, because in Maine, there are a number of scattered treatment centers. Instead, this is at her office. The date that I had for the 27th is for the prep at the treatment center. They can not do the treatment right away, because they have to make sort of a cast of your body to hold you immobile while doing the treatment, and they have to give you a CT scan, and then tattoo your body so that they can line up your body with the area that they are treating. Before your actual treatment, there are quite a few things to check, to make sure that you are getting the smallest amount of radiation that will provide a positive treatment.
So Dr. Godin turned out to be a warm, empathetic person, who understood that while emergency radiation is almost an oxymoron, this was, in fact, an emergency. She also told me that part of my problems breathing is that my most recent CT scan - yesterday - showed that I have fluid in one of my lungs. I am not sure why I was not told that at the oncologist's. She told be to be at the clinic tomorrow morning at 8:00am, and we would do the prep work, and that she would run all the numbers and figure out the specifics of my treatment, and they would do the first treatment at 10:00am that same day. She wants to do my 2nd treatment on Friday. There will be follow-up visits next week as well. (For those of you that care, Doug, my initial two treatments will be around 3-4 grays.)
I literally feel better already. Not a lot better, but being taken seriously, and immediate movement on my treatment has allayed many of my fears. My muscles have relaxed a bit, which helps. Along with the prednison, I should start seeing a lot of improvement by the middle of next week. My regular oncologist will be back next week as well, so I think that will help keep things moving.
Leif
My concern was, what if it doesn't? What is plan B? He said there was no plan B, that I would go on the prednison and then in a couple of weeks, get radiation. I maintained that I wanted to work out a plan B, because my lymphoma was progressing rapidly. Last week I had a little trouble breathing if I was laying down, but this week, it has progressed to the point where I have to put enough pillows under me such that I am at a 30° angle or so, in order to breath. In two weeks, it is conceivable that I will have trouble breathing if I am at a 90° angle. Then what? I will be dead. Before they start the actual radiation.
His solution? Take the prednison and see if it helps. If it doesn't help, we can stick a tube down your throat. I tried to explain that I didn't think that a tube would help, because it is my understanding that I am not having trouble breathing from constriction of the throat, but because the lymphoma is pressing down on the Vagus nerve, which (among other things) controls the diaphragm. He told me "Nothing more can be done." Which is clearly not true. Even if he believes that I am worried for nothing because the prednison will take care of it, there seems like there are better ways to help relieve my stress. As I said, I have poor rapport with this man.
So, after I got out of there, my plan was going to be to call Kate, one of the nurses in Dr. Meehan's office, and I knew that she would make sure that I was taken care of, even if I had to check into the emergency room at DHMC in order to get radiation sooner. I did not call her immediately, however, as I had a 1:30 appointment with Dr. Godwin, the radiologist, and I would know for sure what my radiation schedule would be.
There is the initial consultation, where you meet the doctor, and come up with a plan for your case. This does not even happen at the treatment center, because in Maine, there are a number of scattered treatment centers. Instead, this is at her office. The date that I had for the 27th is for the prep at the treatment center. They can not do the treatment right away, because they have to make sort of a cast of your body to hold you immobile while doing the treatment, and they have to give you a CT scan, and then tattoo your body so that they can line up your body with the area that they are treating. Before your actual treatment, there are quite a few things to check, to make sure that you are getting the smallest amount of radiation that will provide a positive treatment.
So Dr. Godin turned out to be a warm, empathetic person, who understood that while emergency radiation is almost an oxymoron, this was, in fact, an emergency. She also told me that part of my problems breathing is that my most recent CT scan - yesterday - showed that I have fluid in one of my lungs. I am not sure why I was not told that at the oncologist's. She told be to be at the clinic tomorrow morning at 8:00am, and we would do the prep work, and that she would run all the numbers and figure out the specifics of my treatment, and they would do the first treatment at 10:00am that same day. She wants to do my 2nd treatment on Friday. There will be follow-up visits next week as well. (For those of you that care, Doug, my initial two treatments will be around 3-4 grays.)
I literally feel better already. Not a lot better, but being taken seriously, and immediate movement on my treatment has allayed many of my fears. My muscles have relaxed a bit, which helps. Along with the prednison, I should start seeing a lot of improvement by the middle of next week. My regular oncologist will be back next week as well, so I think that will help keep things moving.
Leif
Leif,
ReplyDeleteYou've done exactly the right thing to push for what you think is needed. I'm afraid too many Doctors are inclined to simply take the easy way out and blame any resulting problems on the bureaucratic system. Hang in there!
I and Becky play the roles of "Good advocate, Bad advocate", so we work pretty well as a team to get the care that I need. My lymphoma is so aggressive that it is often hard to get the treatment in a timely fashion. We have been reviewing what we could have done to accelerate the treatment this time.
ReplyDeleteI think that perhaps I could have been more forceful during my meeting with Dr Benton on the 4th, and tried to advocate for a biopsy of the lymph-node at that time, but we were not convinced back then that it was necessarily a relapse of lymphoma, and the biopsy of a lymph node is not a simple procedure.
Perhaps, I should have stopped in on the 7th (which is a Friday) and had Dr. Benton look at it again, because it had grown to about 2cm by 3cm by that time. He might have gone ahead and scheduled a biopsy for the following week, although the following week, I was going to DHMC anyway and Dr. Meehan could make the call, as he has a lot more experience in it than anyone here. Lymphomas dont grow so fast that a week would make a difference (except that I have a super rare and super aggressive form).
In the final analysis, I am not sure that I could have gotten things moving more quickly, although I think that probably stopping into the office on 6/7 and tried to get a biopsy scheduled would have been a good idea. If I could have had the biopsy on the 11th, That might have moved things up by 6 days. Hard to say. They may still have wanted to wait for Dr. Meehan to ok it.
I guess 20 days from first noticing the little nodule to getting full treatment is not that long considering the number of people and departments involved. Especially with two red herrings thrown into the mix. But you really do have to advocate hard for yourself, and when you are worn out, your designated pinch-advocate steps up until their resistance is worn down.
The vision of hindsight is often clearer because we know what we didn't know better .... but, if there is a takeaway from this it might be just to push more for anything that can tell you more about whatever it is: lump = biopsy; breathing trouble = CAT scan; bad vibe with substitute doctor = seek second opinion. I'm so glad you got going on the radiation today. That first doctor yesterday wanted to put you back a month. Ack. Go have some fun at the camp in Brooks.
ReplyDeleteBleah, I had no clue all of that happened! It explains some of why the oncologists don't like to cover each other; nobody knows you like your own docs. But, still no excuse for his approach. Have fun at camp and hope the weather is wonderful and the bugs are scarce.
ReplyDeletePaula
It is mostly about the rapport and the trust that you build up with your regular doctor. It was not that he was wrong - the steroids did make an immediate difference. I just wanted some support on a contingency plan, because I was having difficulty breathing, and that not just scary, but clearly there are things that could have been done if the steroids had not worked. I needed the comfort of knowing what they might be, even though that train of thought was admittedly somewhat irrelevant until we actual got to that stage. Still, I am surprised that he did not explain that the difficulty in breathing was from fluid in my lung (as seen on the recent CT scan) and not the lymphoma pressing on the vegus nerve as was previously assumed.
Delete