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 were reviewing what we could have done to accelerate the treatment this time.
June 1st. I first noticed the lymph node and called it in to the on-call physician at DHMC that same day. He suggested that I keep an eye on it and have it visually checked by Dr. Connelly at my next regular visit. He thought that it was unlikely that it was lymphoma, but that it might be a virus.
June 4th, my regularly scheduled visit, but Dr. Connelly was out, so I met with Dr Benton, we did extra blood work to check for viruses and lymphoma. and set up a visit for June 10th - the following monday. I was still feeling pretty good at this point, but not as well as I was feeling just 2 weeks ago, so I was concerned. I was having a lot of fatigue, and some problems with nausea and headaches.
June 8th, I went to the ER for a killer headache and vomiting. I had a CT scan to check for stroke or a blood clot in my head along with a spinal tap to check for viruses.
June 10th, the lymph node in my neck had swollen to 4cm by 4 cm, but the one in my groin had disappeared. The CT scan and the Spinal tap both came back negative for viruses. Dr. Connelly was pretty sure, by this time that it was a return of the lymphoma, so she scheduled my for an MRI, as there was a good chance that the lymphoma was in my head, between my skull and brain - hence the headaches. I also got more blood work and hydration, because my kidney levels were up (from all the contrast I had been taking).
June 12th I had the MRI.
June 13th I met with Dr. Meehan at DMHC to come up with a plan to fight the lymphoma. The MRI had come back negative, so this did not seem to be quite so dangerous relapse - that is to say, it was not certain to be fatal. Step one was to start getting me off the immune suppressants as fast as he dared, balancing the need to have the donor cells active in fighting the lymphoma and not getting too bad of a case of donor vs graft disease. Step two was to get a physical biopsy of the largest lymph node to confirm that it is in fact, lymphoma. Step three was to put me back on a large dose of steroids - as soon as we had confirmation that it was lymphoma.
June 14th started having some trouble breathing. Called into the cancer center, and we scheduled an additional CT scan for Wed, June 15. The nurse scheduled with radiation and got me the first available appointment, which was June 26th. You are not supposed to schedule radiation before you have confirmation, but I managed to talk everyone into it.
June 17th, had the biopsy. Went smoothly, and did not wake up during surgery. In the meantime, my breathing had been getting more difficult. I called radiation again, and asked them to move the date up for the consultation if they had any cancellations. I could make any time that they had open. They called back and had an opening on the 19th.
June 18th, had the CT scan.
June 19th, had the frustrating meeting with the doctor that was subbing in for Dr. Connelly, but had a long post meeting with Dr. Connelly's nurse and she gave us some reassurance that things would be expedited.
June 19th, Met with Dr. Godin. She understood the aggressiveness of my relapse, and had talked with Dr. Meehan. She scheduled me for the prep meeting and the first radiation for the next day.
June 20th, Got my first radiation. I am already feeling better from the steroids, and I think that I should see some real improvement by the end of the weekend from the steroid/radiation combo.
Looking back over what happened, there was a red herring from my nausea and headaches during the second week of June. It turned out to be unrelated, but it meant that there were more things to check for, and we went down the wrong path for a week. Also confusing the issue was the swollen lymph node in my groin which went away. It was also unrelated. Lymph nodes sometime swell for other reasons, and the timing on this one seemed like it ought to be related, but was apparently not.
I 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 that was the week that I was going to DHMC and Dr. Meehan could make the call, as he has a lot more experience in it than anyone here. Lymphomas don't 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 I should have probably stopped into the office on 6/7 and tried to get a biopsy scheduled. 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, you need to have your designated pinch-advocate step up until their resistance is worn down.
I am in my second week of radiation. It has been pretty rough on me - the fatigue is grinding, but there is less fluid in my lungs, and I think that the lymphoma might be smaller (although they did take a melon-ball chunk out of it for the biopsy, so that definitely shrunk it a little). We will see where everything is at this Friday. The real effects of the radiation are not likely to be seen for a week or so after my last treatment. I will keep you all posted.
Leif
No comments:
Post a Comment