[12:06pm]
I just got back from my oncology appointment in Berkeley. All that traveling (we left at 5:30am) has left me utterly exhausted! It appears I've become as pathetic, perhaps more, than the worst part of Stanford V. Last I checked, my hemoglobin was at 10.5; the worst during Stanford V was 10.1. However, my pulse today was an incredible 127! From what Barbara tells me, this is because my blood is delivering less oxygen per cell, so the heart has to pump faster. Still, under Stanford V, my pulse was never this high. Therefore, I conclude that my hemoglobin is under 10.1, and I am now at an all time low. Woohoo!
I vow to not move more than 100 feet in the next day. :P That's how tired I am.
Then there's the nausea, which is still quite annoying. For the first time, smells and tastes trigger it. I find I am very picky what foods I eat, which is strange because I can simultaneously be hungry and want to eat nothing at the same time. One morning, I nearly lost my stomach because the water tasted weird... though, the nausea is always worst in the morning.
But 1 ativan every four hours (two in emergency) always seems to do the trick.
As for the appointment itself, it was mostly good news.
First off, my doctor was extremely amazed at how well I handled the three sessions of ICE. Maybe they say that to all the patients, but the compliment felt nice, and I do think I have a resilience to the stuff.
Anyhow, my doctor talked with the Stanford doctor, and they are communicating! He seems to be under the impression that the Stanford doctor wanted a 4th ICE, but I think that's just up in the air in the moment. The important thing, is that they set up a referral appointment. During this appointment, I believe that I will be administered Cytoxan, and have apheresis performed within a few days. The only question: how soon can I get this appointment?
Additionally, my doctor seemed to indicate something quite distressing, and referred to it as a "holding pattern." Let's say that you're on your third ICE and apheresis has been performed, but the Stanford BMT rooms are currently booked. They may just give you a 4th ICE to keep the cancer in check as they wait for another room to open up. If a room was open in the first place, then no 4th ICE, and proceed to BMT. This is disturbing. I like cancer treatments to have a strategic purpose, not an administrative one.
The other distressing news was delivered in a scripted manner. Remember when the Stanford nurse was telling me about all the new tests that would need to be accomplished? "First the Muga, that's easy... then the Pet/CT, that's easy... then the Bone Marrow Biopsy, that's hard." Well, my doctor said pretty much the same thing verbatim. They know you're terrified about this, and perhaps they all go to the same seminar on how to deliver the bad news. I swear, my physician delivered the news that I had cancer far more directly and bluntly than the news that I need a bone marrow biopsy.
We told him that we weren't going to do it without sedation of some kind. I asked him if there was a way he could perform the procedure in a "humane" way. He looked a little flustered and apologetic at this. Perhaps I should have worded that differently. "We used to provide some sort of sedation for the procedure," he said, "but the new FDA regulations are unreasonable regarding the amount of equipment and manpower for a conscious sedation bone marrow biopsy." [Damn the FDA]
We told him that we would seek out other places that would perform this procedure. He said that there were places that would do this, but also warned that "Stanford may want to do things their way." It's funny, the threat of a bone marrow biopsy this time around did not illicit the emotional response of last time. Knowing that I would be sedated, or something, at all costs, gave me the comfort I needed. Even if I have to go to downtown Oakland for heroin before my biopsy...ok, maybe not that far...but you get my point!
It's good to have my normal oncologist back from vacation. He went to Ecuador. So I asked him, "I'm dying to know -- did you go to Galapagos?" He looked genuinely pleased that I asked, and then told me that he did not. That's like going to Egypt without visiting the pyramids! Oh well.
Wednesday, September 3, 2008
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5 comments:
*So* relieved that you're laying down the law re the biopsy sedation. And I can't wait to hear when your referral appt. will happen!
I feel so shitty about you not being able to come home because of my cold! It has actually gotten a little worse. I can't breathe out of my nose at all at the moment so I am glad you have not been anywhere near me recently. What is minor for me would be tragic for you.
I am really bummed that I was unable to go to the doctor appointment today, however, it is good to hear that it went well.
I just talked to Barbara and she is on a serious mission to get your biopsy done with sedation. You are in good hands.
I hear you with the frustration. I hate the cancer too! Pisses me off...
Hang in there, I know it is hard right now but the work you are doing fighting this disease is work that you are doing for all of us, so thank you.
We miss you and look forward to seeing you really soon.
Love,
Jen
I made you an appointment with a local small practice oncologist on Aug. 15th 1045am at his office. He is a local oncologist whose receptionist knows for sure that he uses IV sedation when he does bone marrow biopsies. (Sic plural) She could not identify the exact drug used but it sounded like Versed. That would probably work ok for you.
The appointment is just for an initial consultation. He will do the BMB at a second appointment.
This also gives us a local area physician who is up on your treatment. It can't hurt to have 3 doctors. (pun) So he may be needed in the far future too, who knows.
He has to have a copy of your recent records for the consultation and there is the difficulty. I called your hospital and they say it will take 5-10 days to get the records ready. Sometimes they allow copy services, as for law firms, to do the official copies. I located a nearby copy service and found that they would need 4-5 days at least too. Given that we want to postpone this BMB as much as possible, I think we will be ok with having your hospital do the copying. It's certainly cheaper. I forged (with permission) Austin's signature on the permission form and faxed it to the hospital, however the fax at my company seemed unable to talk to the fax at the hospital, so I had to go to a local UPS store to do the fax.
I suggest we try to shame these hospitals for their unwillingness to permit suitable anesthesia for this very painful procedure. It is a bit appalling.
Bone density may have to do with it. Some reading I've done seems to show that the elderly, and small boned women, and such have a fairly easy time with BMB. The pain is more for men with heavy, dense bone. So they are expected to just suffer because they are men? Not fair. One of the tenets of medicine is to do no harm to the patient. But when a simple diagnostic procedure can cause mental and emotional trauma, and the practitioner denies suitable anesthesia, isn't that harm? On the other hand, here is a case where the FDA requires a standard of care for the anesthesia, if given, which is not accepted as normal and covered care by insurance, but which could become legal basis of an outrageous lawsuit on the part of the patient if something went wrong and the practitioner ignored the standard. So result: no one gets anesthesia. Dumb. What good does it do if the FDA says "you must give anesthesia this expensive way only" but then says "it is acceptable to withhold anesthesia for this procedure." Don't they know this means "Anesthesia will cease to be offered for this procedure even for patients for whom it is necessary."
I wanted to include all this in your blog entry because it is time that lymphoma patients who are told to get a bone marrow biopsy STOP AGREEING TO DOING IT WITHOUT SEDATION. They will perhaps read this blog entry for help. There is an alternative. If hospitals see this happening, perhaps they will act and permit some patients, at least those with thick bones, to receive sedation. In the meantime, I can advise patients to do what I did. First call your local Cancer Resource Center or support organization. There are many. These groups may know of local oncologists who use merciful methods of BMB. That is how I found a doctor. If your local group does not know of such oncologists, tell them how important it is to make a list of such doctors, because there will soon be many other patients searching for such help. If you don't have a name, just calling small-practice oncologists in your vicinity may be required. Eventually the patient will find some oncologist somewhere who can do the BMB with appropriate sedation. Good luck to all. Remember, do not allow your hospital to tell you that sedation is not available. It is. Shame them into providing you with suitable sedation, or force them to refer you to someone who will.
My bone marrow biopsy HURT LIKE HECK too! I know they heard me hollering far down the hall. My oncologist was sweating and breathing hard by the time he was done. The second one done by the oncologist at Stanford was the same story, but he was UNSUCCESSFUL in getting the marrow.
My bones are probably pretty dense as my body mass is not that of a little old lady. The good news is that I probably won't ever get osteoporosis.
I agree --- SOMETHING should be done to help patients through this very painful procedure.
Tante Laurie
Really really glad you're pushing them on the sedation. I hope it works out.
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