Lymphedema
I remain, alas, in the soup – thanks to a condition called lymphedema. This saga began, as you may remember, on 25 June – when I went under the knife to have my prostate taken out at the National Institutes of Health in Bethesda, Maryland. That operation went smoothly, and there were no immediate complications – no infection, in particular. The initial post-operative period was a bit grim, but I made steady progress and went home on 3 July. Soon thereafter, I learned that the cancer had not spread beyond the prostate and that I appeared to be cancer-free. All that seemed to be required for me to be fully back on my feet was caution and a bit of patience. But things were not quite so simple, and the tale may be instructive – for you, my gentle reader, may someday go under the knife yourself.
Cancer surgery always or nearly always involves a partial removal of the lymph nodes that lie in the vicinity of the cancerous cells. Nearly always, when cancer spreads beyond the organ where it originates, it spreads first to these lymph nodes. If they are not cancerous, one is nearly always home free, and chemotherapy and radiation are unneeded. If the lymph nodes are cancerous, however, chemotherapy or radiation is advisable.
When these lymph nodes are removed, the nodes into which the surgeon has cut bleed fluids. Generally, this bleeding of fluids dries up pretty quickly. Even when the flow continues, it ordinarily drains into the abdominal cavity (lined by the peritoneum) whence, if is not excessive in amount, it is re-absorbed and excreted. In some cases, such as my own, the flow does not dry up, and it flows elsewhere – into the arms, the legs, or into one of the cavities in the lower back where the kidneys are to be found. This condition, which is called lymphedema, can cause various kinds of trouble, and it requires medical intervention.
In my case, the fluids collect near my left kidney, and when the amount becomes sufficient they put pressure on the muscles that control axial movement of my left leg, producing in the end intense pain. In time, if nothing was done, they would do harm to my left kidney.
For nearly three weeks now, I have had a catheter in my lower back draining the fluid, relieving the pressure on the pertinent muscles, and protecting my kidney. The first day nearly a liter came out. Then, the numbers dropped steadily for a while, and then, alas, they stabilized at about a fifth of a liter per day.
About five days after I arrived, I came down with pneumonia, but that has passed. I feel fine. I am no longer coughing a great deal. I have plenty of energy. But the flow continues. Were it to fall to, say, one-tenth of a liter per day, the doctors in charge of my case would remove the catheter on the theory that it is functioning like a wick and eliciting to some degree the flow of the fluids into the pertinent cavity. After a few days, they would do an ultrasound to check whether the liquids were still collecting in the cavity near my left kidney. If they were not, they would send me home.
In an attempt to reduce the flow, the medical personnel at Intervention Radiology have been subjecting me to a process called sclerosis every other day. Through the catheter, they introduce a drying agent into the cavity – in my case, near-pure alcohol. I then roll around with an eye to coating the cavity, and the fluid is withdrawn. This procedure causes the cavity to pucker up, and it may even induce it to close – which would force the fluids to flow elsewhere – into the abdominal cavity, one hopes.
The sclerosis seems to be working as intended. The pertinent cavity has shrunk. But the flow has not abated. So here I remain, twiddling my thumbs and wondering whether I will be able to return to the classroom at Hillsdale on the 29th of August, which is the appointed day. My doctors advise patience. But although I am a patient, I have never in my life been all that patient.
If, in the end, this does not work, there is always the knife. A window can be opened into what I will call the left kidney cavity so that it empties into the abdominal cavity. Surgery is never, however, welcome if something else will work. It is always dangerous, and there may be particular dangers associated with this species of surgery that are as yet unknown to me.
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Comments:
Oct '10
Re: Lymphedema
I hope you get well, Professor Rahe.
Dec '10
Re: Lymphedema
Paul A. Rahe
The Outlaw Josey Wales. · 2 hours ago
Endeavor to persevere Prof Rahe
Jun '12
Re: Lymphedema
Professor Rahe,
I'm so sorry to hear this. I was diagonosed with Lymphedema 2 years ago. it involves my lower legs, and is caused by one of the many surgeries that I had when I was a child. It didn't come up suddenly, which has puzzled me.
Anyway, I was wondering if your lymphedema doctor has told you this is a chronic condition? As far as I told, this is a life-long thing. Because my lower legs are involved, to get rid of the fluid (which causes my legs to swell up), I have to wrap them (tightly), and force the lymph fluid up into my body so I can pee it out. Fun? Not really. Right now, I'm trying to get my legs down to a manageable size so I can order lymphedema garments (pull up compression socks that are custom made). My husband has to help me with the wrapping and he's not been real consistent which is why I am STILL having problems. I saw a lymphedema specialist for 6 months who taught me how to wrap my legs & answered questions.
Edited on August 14, 2012 at 8:40pmDec '10
Re: Lymphedema
" But lately when someone informs me, for example, that boiled lemon marigue extract applied anally three times a day will cure my condition, I reply, "Oh thank you, but I have decided just to die instead!"
For me that would depend greatly on whom was doing the application :-)
Aug '11
Re: Lymphedema
Look on the bright side, ingested alcohol is a part of the treatment! Perhaps you should suggest a fine single malt next time.
Once they start messing around with stuff, it starts to feel like some kind of mad experiment. I hope you get past this without further intervention.
Thoughts and prayers.
Sep '10
Re: Lymphedema
I have not read every post, but I have seen Josey Wales about 15 times that I will admit to. So, just don't let Granny give you a poultice and politely ask Ten Bears if you can do the blood brother thing without cutting your hand. After nearly 27 years in medicine, I can tell you that an upbeat attitude does help. There are thousands of us out here in Ricochet-land that love you and pray for you even though we hardly know you. We know your heart. Hang in there. -andrew
Re: Lymphedema
Thanks, I will. Hang in there!
Re: Lymphedema
DanaWheels: Professor Rahe,
I'm so sorry to hear this. I was diagonosed with Lymphedema 2 years ago. it involves my lower legs, and is caused by one of the many surgeries that I had when I was a child. It didn't come up suddenly, which has puzzled me.
Anyway, I was wondering if your lymphedema doctor has told you this is a chronic condition? As far as I told, this is a life-long thing. Because my lower legs are involved, to get rid of the fluid (which causes my legs to swell up), I have to wrap them (tightly), and force the lymph fluid up into my body so I can pee it out. Fun? Not really. Right now, I'm trying to get my legs down to a manageable size so I can order lymphedema garments (pull up compression socks that are custom made). My husband has to help me with the wrapping and he's not been real consistent which is why I am STILL having problems. I saw a lymphedema specialist for 6 months who taught me how to wrap my legs & answered questions. · 1 hour ago
Edited 1 hour ago
Very informative.
Nov '11
Re: Lymphedema
Yes, that's what the doctors always say.
And it's true.
But what they don't tell you is the reason an "upbeat attitude" helps is because, if you seem crabby, the quality of your care will decline.
The other implication of their cheery advice is, if you don't recover quickly, it's your own fault for not maintaining the correct frame of mind.
I've always had a bad attitude. It's one of my most endearing traits. To change now just because of a bothersome little terminal illness would seem . . . . cowardly.
Nobody ever died of a bad attitude. Serious illness is disturbing enough without trying simultaneously to reform one's personality so others will feel more comfortable about one's illness. If, like me, you had a bad attitude before you got sick, I advise you not to abandon it. If you had an "upbeat attitude" before you got sick, well, I suppose you should try to hang on to that, too, even though nothing tries my patience more than a fool with an upbeat attitude.
Edited on August 15, 2012 at 2:18amAug '11
Re: Lymphedema
Please be patient with all aspects of the care you receive.
I love western movies. Have you seen The Stalking Moon with Gregory Peck and Eva Marie Saint? It is an exceptional western. I don't know if you would have to buy a disc or if you could download it, but it is really a great film, greatly worth seeing. It will take all your attention.
Jun '10
Re: Lymphedema
You are alive, cancer-free, and watching Josey Wales - situation excellent!
Sep '10
Re: Lymphedema
Two years ago my wife was diagnosed with breast cancer. Then after a hellish year that included chemo, radiation, and the removal of a body part (and a really nice body part at that), her arm blew up like a ballon from lymphedema. So when she should have been rejoicing over being cancer-free, she was instead depressed about having a condition her doctor told her would never go away.
With massage and compression, the swelling went down but she had to wear a compression glove and sleeve everyday to keep it from coming back. Then we left it all up to prayer, and that worked. She hasn’t worn her sleeve or glove in nine months and her arm is just fine. Last winter I thought the cooler weather was what kept the swelling away. But after the heat and humidity that we had this summer it seems clear to me that our prayers were answered.
Dr. Rahe, most doctors do not know much about lymphedema. Take the time to see if you can find some sort of specialist. With a good doctor and a Great Physician, you can see complete victory.
Apr '12
Re: Lymphedema
Dr. Rahe: sorry to hear you aren't out of the woods yet. Best wishes for your full recovery, soon! Also good wishes for your wife. This kind of situation is always hard on the partner.
Aug '10
Re: Lymphedema
Dr. Rahe: Thank you for taking energy to write Is It Hillary Time? . We love your posts.
Continuing to pray for your complete recovery,
Ansonia & Tom
Jan '11
Re: Lymphedema
Like so many others on this thread I too developed lymphedema after surgery -- mine was on my knee. It took many weeks for me to figure out what was wrong -- the surgeon, who was excellent on the knee, couldn't diagnose it. Fortunately I too am a physician and was able eventually came up with the correct answer. I was able to find a lymphedema specialist. After several months of intense treatment I am now able to see the doctor twice a month to stay stable. I have since referred several of my own patients to my own doctor with excellent results.
Professor, God speed and best wishes for a recovery and eventual stability of your condition.
Sep '10
Re: Lymphedema
Astonishing
Yes, that's what the doctors always say.
And it's true.
But what they don't tell you is the reason an "upbeat attitude" helps is because, if you seem crabby, the quality of your carewilldecline.
EDIT
I've alwayshad a bad attitude. It's one of my most endearing traits. To change now just because of a bothersome little terminal illness would seem . . . . cowardly.
Nobody ever died of a bad attitude. Serious illness is disturbing enough without trying simultaneously to reform one's personality so others will feel more comfortable about one's illness. If, like me, you had a bad attitude before you got sick, I advise you not to abandon it. If you had an "upbeat attitude" before you got sick, well, I suppose you should try to hang on to that, too, even though nothing tries my patience more than a fool with an upbeat attitude. · 16 hours ago
That is one of the ugliest posts that I have ever seen on this site.
Nov '11
Re: Lymphedema
Andrew
Astonishing . . . I've alwayshad a bad attitude. It's one of my most endearing traits. To change now just because of a bothersome little terminal illness would seem . . . . cowardly.
. . . If, like me, you had a bad attitude before you got sick, I advise you not to abandon it. If you had an "upbeat attitude" before you got sick, well, I suppose you should try to hang on to that, too, even though nothing tries my patience more than a fool with an upbeat attitude.
That is one of the ugliest posts that I have ever seen on this site.
Sorry. Serious illness intensifies my already dark and perverse sense of humor, . . . but it gets me through the night and sometimes even helps some others similarly situated, if they take it in the right spirit. I do see how it makes doctors grumpy--some of them jump right up on their high horse--but I figure they can take a little ribbing: BTW, Did you hear the one about the doctor with the bedside manner of a digital alarm clock?
Nov '11
Re: Lymphedema
Sorry if my comments caused anyone distress. The intent was to be darkly humorous, and at the same time to try to share some learning pressed upon me by actual experience, as I am coping with cancer, likely terminal. It seems few appreciated the message, or the joke, perhaps because it wasn't all that funny, except perhaps to whoever finds themselves in a "certain situation."
Speaking seriously for a moment, which requires a tremendous effort these days, I would observe that extended illness can be a lonely experience, even if one has the best doctors, best family, and most supportive friends. So if ever things seem especially tiresome, a little dark humor can sometimes be the only effective medicine.
For dignity's sake, even when ill one must of course strive to maintain a certain public decorum--an upper lip of a reasonably manly firmness--while avoiding the sad mistake of supposing it's always better to hide oneself behind a stiff upper lip so as not to burden those who love you.
Illness is an intense learning experience, and as such, for a philospher, it can't be all bad, right? (Ooops, another bad joke!)
Hang in there!
May '12
Re: Lymphedema
Not nice to make the doctor squirm, Astonishing. Next you'll remind them that they're human and really "cheese" 'em off.
Like you, I'm a lawyer, Astonishing. Funny how the docs don't appreciate our exhortations to keep an upbeat attitude when we get them in our professional clutches. Too bad, that, because I reckon if they concerned themselves as much with their own attitudes as they do with their patients', we'd get them in our clutches much less often.
Sep '10
Re: Lymphedema
You guys. This post is about Professor Rahe, not you. Upbeat attitude and our clutches? Have you no common decency to take your not-so-cute-I-am-a-smug-lawyer act outside. Disgusting.