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Last modified on
Tue Mar 12 2002 21:48:03 PST

Survival tips


6.  Survival tips


6.0  Overview

    Hodgkin's Disease is very treatable, but that doesn't mean that going through treatment is a "piece of cake". Treatment will go a lot easier if you know what to expect and take advantage of lessons that the "people who have gone before you" have learned.

    In addition to the information below, I strong suggest that you visit my Patient Do's section for new Hodgkin's patients.


6.1  Come and join the Hodgkin's mailing list!

    It helps to stay in contact with others. Peter Guethlein runs the Hodgkin's mailing list. If you are not a member, you should be!. To join, send email to <listserv@solar.org> with SUBSCRIBE HODGKINS in the message body.

6.2  How to make best use of the Hodgkin's mailing list

Some suggestions

    Hi and welcome to the Hodgkin's mailing list. In order to make your and everybody else's stay here more enjoyable, I've compiled the following suggestions:

    • Controversial topics - The purpose of the Hodgkin's Disease Mailing List is to allow current and former patients, and those who know those patients to interact in a helpful and nurturing environment. Usually, the list is very sedate, but tempers have been known to flare around controversial topics such as medical marijuana. These topics should not be considered "off-topic" but one should be careful to be helpful. For instance, if someone posts a message asking for other's experiences with medical marijuana, telling them "Marijuana destroyed my brother's life and it'll destroy yours too!!!" will probably not be helpful.

      One should assume that all the people on this list are adults capable of weighing the pros and cons of any medical decision.

    • Inappropriate topics - However, while sensitive subjects can and should be discussed, the list should not be considered a "free for all" where nothing is off-topic. There are some things which really aren't appropriate, and should not be posted. These include:

      • VIRUS WARNINGS - These are the bane of the Internet's existence. There are countless variations of the "If you get an E-Mail with subject line XXXXX it can ruin your life" warning. These are always false, and are nothing but a continual irritation to those who know better. For more information, please see http://www.ciac.org/ciac/CIACHoaxes.html.

      • JOKES - While we appreciate that you have a sense of humor, forwarding jokes, especially those that have nothing to do with Hodgkin's Disease aren't appropriate. There are dozens, if not hundreds of other mailing lists specifically for jokes, we suggest you forward the post there.

      • WELL WISHING - Frequently members of the list will post their latest ordeal, asking for advice. This is perfectly appropriate, however, these posts are often followed by one post with advice and fifteen others all saying something to the effect of "I know it's difficult for you, but we're praying for you."

        If you wish to make such a reply, that is perfectly fine, however, these posts should be directed to the author of the message, and not to the entire list. You will have to edit the To and CC lines of your message. Remember, to reply to the AUTHOR and NOT to the entire list, HODGKINS@SOLAR.ORG should not be in the recipient list.

      • HTML - This is an abbreviation of HyperText Markup Language. HTML is used on web pages to specify which parts of the document to make bold, to underline, to make larger, etc. At some point, someone decided it would be a good idea to put HTML in E-Mail messages also. However those people were very, very wrong. Not everyone (in fact, most people) uses a mail reader which understands HTML, which makes messages sent using HTML very difficult if not impossible for them to read.

        How you disable this "feature" is going to be dependent on what software your using, so I can't tell you how to do it here, but please take the time to figure it out and do so. Everyone will thank you for it.

      • QUOTING - When you reply to a message, your mailing software may or may not automatically include the message to which you are replying. If it does, it will usually delimited in some way so you can tell it apart like this:

        > this is a quoted message
        And this is a reply.
        Note that the reply follows the quoted text.

        When quoting, the most important thing to remember is to trim your messages. You want to leave just enough text in that others know what you were replying to, but not so much that they have to read more than is necessary. There are few things more annoying than someone quoting an entire long message, only to add "me too" at the bottom. Only slightly less annoying is someone saying "me too" at the top of an entire long message.

        The rule to remember when quoting is trim, trim, trim. If it's not necessary, get rid of it... but don't get carried away! Don't reply to a message without quoting the original or people won't have any idea what you're replying to and your posting will go to waste.

    • OTHER RESOURCES

    -- Darrell Fuhriman <darrell@grumblesmurf.net>

Some "technical" remarks concerning this list

    The recent "Tired of unsubscribers"-thread reminded me of a couple of points I wanted to address for a long time.

    1. "Clueless Unsubscribers"

      It's simply a fact of life that you can give instructions as clearly as you think is possible and still find enough people who don't get it. I'm sure people who write software or work at help desks could tell lots of entertaining stories about this ("I couldn't find the 'ANY-key' ..." and the like). The "unsubsciber"-problem is there even on other mailing-lists I'm subscribed to, where you would expect only computer professionals to be on. Since they usually put the word "unsubscribe" in the subject-line as well, it is easy to ignore (or filter) those mails. If you furthermore ignore all mails with no subject at all, you will not be bothered anymore.

    2. "Excessive Quoting" and "HTML-Enhanced" Mails

      Somewhere in the "Mail-Preferences" section of Netscape there is an option which reads "By default send rich text messages". There may be a similar option deep in the bowels of the Internet Explorer too. I'm sure most subscribers of this list would highly appreciate, if everybody using their browsers for mail-handling turned off this option before posting.

      When referring to a mail written by somebody else, it's usually sufficient to quote a couple of lines. IMHO there is no point in fully quoting a two-page mail just to follow it with "I feel like you!" or similar. See, I'm in the lucky position of working at a University, with a direct connection to the Internet and hundreds of Megabytes of idle disk-space for my stuff. Most people probably pay for downloading their mail from their providers mailspool and/or for the space they use. Regarding the high volume of this list, I'm sure not using "rich text" mails and limiting the amount of quoted stuff would increase its usefulness even more.

    -- Martin Trampler <trampler@pi1.informatik.uni-mannheim.de>

6.3  How to unsubscribe from the Hodgkin's mailing list

    Should you ever elect to unsubscribe please follow the instructions which can be found at the end of every message. A very common mistake is to send the "unsubscribe hodgkins" message to the mailing list i.e. to the same address where all the other texts were sent to. This is wrong. It happens when you use the "Reply" button to generate the address. The mailing list will distribute your request to every member on the list. Not quite what was intended.

    To unsubscribe you have to send the request to the computer control program which listens to the name of LISTSERV.

    This means: send mail to <listserv@solar.org> with UNSUBSCRIBE HODGKINS in the message body.


6.4  Hodgkin's related chat rooms

Check out Hodgkins Disease Mail List Chat Line

Lymphoma chat on AOL

    On AOL there is a chat hosted by myself and Kimbra Wilder (who you quote extensively) Mondays at 11 PM Eastern US Time, Keyword GLENNA. It's called "Lymphoma Chat" and it is a low key, friendly chat covering the full range of issues from pre-diagnosis to treatment to remission and long term effects and all between. -- Mike Barela

6.5  How to get information

How can I get my doctor to answer my questions?

    Question: When I ask my doctor questions, all he says is "That's the protocol." What do I do?

    You might want to put a bit of pressure on your doctors if you want to hear more than "that's the protocol" in response to your questions.

    A helpful perspective to maintain here is that the doctor works for you. He is an independent contractor you have hired to make you well. Under the legal doctrine of "informed consent" (I'm a lawyer and supposedly know about this stuff!), you are entitled to have explained to you all relevant facts material to your treatment decisions. A "material fact" is a fact the patient wants to know or would reasonably want to know in making the decision to undego treatment or during the course of treatment. In other words, if you want to know it and it is not some absurd matter (like what is the middle name of the maternal grandmother of the first person to prescribe Velban for Hodgkin's), then you are LEGALLY ENTITLED TO KNOW IT. If "because it's the protocol" doesn't suit you, then demand another explanation.

    If the doctor does not like the idea of treating you like an intelligent adult who wants to be a knowing participant in her cure, then I humbly suggest you find another doctor with a different attitude. While some aspects of treatment are inconvenient, painful, and a bit humiliating, there is no reason that the process as a whole should be demeaning or belittling as you seem to find it to be. If your doctor does not respect your dignity, individual liberty, and personal autonomy, then you have the wrong doctor.

    Power to the patient!!!! But I confess that I was kind of a wimp when I was in treatment! -- H. Paul Honsinger <honsinger@martinautomotive.comt>

Information-Hunting, or Jungle Navigation

    Okay, everyone - As promised, here are some tips for seeking information on Hodgkin's, whether you're interested in general info on Hodgkin's or material on a specialized subtopic. I'll be posting tips and resources for specific interests over the next few days, so keep watching.

    A special note: I'm deliberately saying little about Internet research. The reason for this is that there are many good Hodgkin's info pages and many pages with multiple links. For most people on this list, those are easy enough to find. What I'd like to provide is some discussion of researching in an actual biomedical library as well as how to search MEDLINE using PubMed and how to search CANCERLIT; these can be valuable databases if you know how to use them and confusing ones if you don't. This is kind of going to be a multi-part thing, so please bear with me. :)

    One more note - the following rules of thumb also apply to reading your medical records. I would especially advise those interested in doing this to really be prepared for the potential upsets involved. It really can be very rewarding and give you a sense of peace, but it can also be rather unsettling. For me, reading my records was the right move - I'm very well versed in my particular case and can basically answer almost any question regarding my Hodgkin's history right down to mediastinal mass size and histology from my staging lap. However, for me it also meant coming to terms with how serious Hodgkin's actually is all over again, including the fact that I had had a less favorable histology and an unfavorably large mediastinal tumor. This can be even tougher if you have a dr who hasn't been of the tell-all school. . .in my case, there were very few surprises, and most of them pleasant ones (i.e., letters from my rad onc to my hematologist saying things like, "the response and probable cure is certainly very gratifying"). Just be prepared for either way.

    INFORMATION-HUNTING: JUNGLE NAVIGATION 101 By K.S. Wilder (and for the curious, I do have an M.S. in Information Sciences; however, this is being written and posted on my personal time and should not be interpreted as representative or intended to be representative of the views, theories, or anything else of my employers)

    Often the best place to begin reading about Hodgkin's, after you've completed the basics described below, is your hospital's medical huge building attractively arranged, a one-staffer operation or the workplace of twenty librarians and forty-five support staffers. In any case, the hours and policies may vary. When I was a teenager, I tended to simply show up on my clinic days and ask the librarian to let me come in to read. It probably didn't hurt that I could honestly say I wanted to be a librarian. When you speak to someone about coming in to read, you may be asked to explain who you are and why you want to come in. It's always best to let them know that you are a current patient of that hospital, because sometimes that can make a difference in whether or not you're admitted. If you're at another med center where you do not have an appointment but would like to visit a library, just tell them the situation honestly. I've never been denied access to a medical library, and this is what I've always done. Do come prepared with (a) plenty of change for the copiers, though often you can get change or purchase a copycard to avoid carrying heavy pocketfuls of coins; (b) pencils and pens; (c) a good notebook, preferably one with pockets large enough to accommodate copied pages - in fact, a 3-ring binder with plenty of loose-leaf notebook paper and notes on your medical situation or a copy of your records.

    The following are rules of thumb that I've found useful as both a patient and survivor seeking information and as a librarian. These are merely guides which may not all be essential for everyone, but do consider them before launching blindly into the maze of the medical library. You and the librarian will both be glad. :)

    • Start with the basics. Before doing research in a medical library, you should read the pamphlets on Hodgkin's provided by the National Cancer Institute/National Institutes of Health and by the Leukemia Society (often given to you at your dr's office) as well as the American Cancer Society's Informed Decisions, available in many public libraries or retailing for around $40 (just checked today). If you don't have a basic understanding, you won't benefit much from additional reading, and this gives you a way to tell those who try to steer you back to square one, "But I've READ those already!"

    • Keep an eye out for unusual resources. Particularly in larger academic medical centers, the library may have various audiovisual materials available, including Grand Rounds videos. These programs that are usually CME for physicians within the institution may provide interesting sources of information on Hodgkin's, though as with other resources one must always pay close attention to the program's date. This can sometimes be a way to get a feel for a doctor before you actually meet him or her, particularly when meeting a specialist at a renowned center.

    • It may be useful to know your own case thoroughly. If you have a copy of your medical records, take it with you, though being well versed in the contents of these can also save valuable time when you're researching. There is a real difference in the treatment of stage II Hodgkin's with only a couple of small sites of involvement and the treatment of stage II Hodgkin's with massive mediastinal tumors. Know how units of measurement translate as well, i.e. rads=cGy, etc.

    • Speaking of knowing translations, it is advisable to work with a few good reference tools on hand, particularly a medical dictionary and a laboratory values handbook. Remember that medical textbooks and articles are written with a particular assumed base of knowledge, and you should be prepared to do some further reading in still more texts as necessary. For example, it may be a good idea to read the general section on CBC and differential counts and the internal medicine text sections before diving into DeVita or Canellos. Some references I've found useful appear in the resource list.

    • Be prepared for surprises, both pleasant and horrifying. One of the advantages of reading about and researching Hodgkin's is that you may learn some encouraging things - as a 16-year-old, I admit I was reassured by DeVita's immediate emphasis that Hodgkin's was one of the success stories of modern oncology and was often curable. However, remember to take everything with a grain of salt - every case is unique, and someone with particular co-factors in their general health or response/lack thereof to treatment may not have the same prognosis as the overall population with their stage or type of Hodgkin's. You may also read some very unsettling things, such as reports of late recurrences, secondary cancers, post-splenectomy sepsis, etc. These should also be taken with caution - again, they may not apply in your case. For example, mixed cellularity is generally reported as having a poorer prognosis than nodular sclerosing or lymphocyte predominant forms of Hodgkin's. However, most texts will add that modern treatments have created a situation where stage tends to carry more weight than cellularity type, and a stage IV-B nodular sclerosing. The key here, as always, is to discuss with your doctor how, if at all, certain information applies to you.

      The toughest thing about reading this type of literature is the number and nature of horrors you may encounter. The day I chanced across the growing literature observing the markedly increased risk of breast cancer in young women treated with mantle radiotherapy for Hodgkin's, I rode home in silent sadness and waited until I was inside my apartment to scream. It wasn't something I liked. But I am glad that I know about it, because for me knowledge gives me a defense. It sometimes gives me a bit of comfort, as with secondary leukemia, where I know from reading that there have been few documented cases in patients who received only ABVD and radiation rather than MOPP, and that at nine years post treatment I'm past the period of highest increased risk for that particular complication, though of course none of us are ever guaranteed immunity. If you read, you may see things that make you cringe, scream, cry, smile, laugh cynically, and/or question. The key is to recognize that your situation is unique and that it's best to be realistic by combining your knowledge with good patient-physician communication and a healthy attitude.

      If you feel that you want information, but honestly cannot bear the thought of bad news, you may wish to sit down with an interested friend or relative and explain this. Tell them what you would define as news you don't want to hear as well as what you would like to know; ask if they would be willing to research and "filter" material for you. Sometimes librarians can do this as well; it depends on what consumer health services are available and what their policies are. Personally I feel less comfortable with this; when I was younger, I did my own selection by skipping over sections with headings indicating that they dealt with recurrence. As I became more comfortable - and neared the beginning of my career, where I knew that someday I might well be required to read these things - I began reading them. When it becomes too intense, you can always take a break. Go for a walk periodically; get a soda in the nearest lounge or the cafeteria; sit by a window and just relax for a while. It helps to take these kinds of "breathers" just to help yourself process the information.

    • Ask a librarian for help. (By the way, don't assume that every library staff member is a librarian - librarians are normally professionals with at least one master's degree, and library/ information science programs do NOT teach book-stamping procedures; they teach Boolean logic and search skills/strategies, databases, information retrieval techniques and theory, information resources, and more.) Seek help from library staff, and realize that if you're in a large library with many staff you may need to ask for a librarian. It helps to specify to the staff member what you need; usually they can determine whether you actually need to sit down with a librarian or not. Sometimes what you really need is just a basic resource to sit down with, and library staff members can often get you started and assist you as needed.

      Librarians may or may not charge for services, depending upon their institution's policy. When talking with a librarian, please be specific about what you want can help maximize what you get out of his/her help - while most librarians know techniques in reference interviewing that "draw out" the need for most patrons, it helps if you're prepared to discuss your interests very openly. This means that if you don't know what direction you want to go but just want to read about Hodgkin's, you might say something like, "I'm really interested in reading about Hodgkin's disease, and I've read the patient materials like the NIH and Leukemia Society brochures, and the ACS Informed Decisions book, so I'd really like something more in-depth. Could you please point me to some good resources for this?" (Actually, many of the textbooks in my resources list would take care of this question.) Another example is, "I'm interested in the late and long-term complications of treatment for Hodgkin's disease, particularly those related to radiation therapy. Could you show me how to get started on looking for that type of information? Do I need to break it down by system or type of complication?" These may sound kind of strange, but most librarians will probably be pleased that you understand their need to know what you really want, rather than just having a patron who says, "Where are your books on cancer?"

      Sometimes you may encounter librarians who want to get detailed with you. They may ask many questions about why you're looking for this information. Please be patient and polite and answer them, because this information may be needed for their statistics (libraries actually do have to justify their existence to hospital boards, and numbers like patients helped, physicians helped, etc. may be used in this process). However, if you get the sense that the librarian is trying to steer you back into the new-patient-pamphlet kind of stuff, feel free to say, "Thanks, but I've really already read this thoroughly and want something more detailed. I know it's tougher reading, and I know that the way to find out which parts apply to my situation is to ask my doctor. I just want to learn as much as I can about this since I have to live with it." Appealing to that information-seeking, educating side of librarians often helps! If all else fails and you feel comfortable talking with your doctor about wanting to read these materials, you may ask him to write you a note for the information (i.e., telling the librarian to give you some material beyond the usual patient stuff), or s/he may even provide you with some information. I have sometimes done packets of literature for patients at the request of their physician. If you don't feel comfortable discussing this with your doctor, take some time to think about why. It's best that you learn to feel comfortable in that respect, but one can have a good physician-patient relationship without this. . .it's just less likely.

      Even as a teenager I became accustomed to mentioning to my hematologist what I'd read that I had questions about ("According to several articles and textbooks I've read, patients with an increased TSH level but normal thyroxine should be started on Synthroid anyway because prolonged increases in TSH levels may increase the already-increased risk of developing thyroid cancer. What do you think about this in relation to me - is that something we need to look at?"), and I found that this way I was satisfied by gaining knowledge yet knowing how it applied to my particular case. I'll post a section on talking about information with your doctor as well.

    • Above all, recognize that the best way to know what info applies to you and how it does is to communicate with your doctor. Bring in what you're reading and talk with him/her about it. Express your interest in learning more about what you're facing. There's more on how to do in the talking-with-your-doctor posting I'm working on at present - watch for it on Labor Day. :)

      Tomorrow I'll be posting a bibliography of resources you may find helpful. In medical dictionaries, I tend to like Stedman's or Dorland's as well. Also, the Fischman laboratory tests book is a great reference for lab values - I'll post the exact citation tomorrow; right now I don't have it handy. Keep in mind that these resources require varying degrees of skill in translating "medicalese;" always remember not to panic when you see a lot of gobbledygook that makes no sense. Crack open that Dorland's and just do what you can!


    -- Kimbra Wilder <Kimbra.Wilder@mcmail.vanderbilt.edu>

Information Part II - Dealing with Native Jungle Animals (Doctors)

    Hint: You may wish to take the same set of materials to dr appointments as you do to the medical library. That way you have all your info on hand, ready to fire away with those questions.

    • Be prepared. Your time is valuable, and so is your doctor's. S/he is much more likely to be patient when you come in with a notebook and pen and say something like, "I have some questions for you - about four; could we please go over those at the end of this visit?" My doctors have gotten so accustomed to this that they automatically look for my list the minute they walk into the exam room. ;) Usually they'll say okay, and there's more chance of getting them to sit down with you rather than you having to throw one question after another at them while they're poised to go out that door. You'll be happier, and I'll bet they will be too. And do keep a written list of q&a - it's easy to fall victim to the dreaded white coat syndrome, which induces amnesia the second your dr walks into the room. ;)

    • Be smart. Don't expect your doctor to take an article clipped from expression, but don't be surprised when s/he warns you of the inaccuracies common in that type of resource. Asking your dr about an item in the newspaper is fine; asking him/her about an article in the New England Journal of Medicine is nice; asking him/her about what a friend said is even okay - it's always best to ask about something you have questions over - but realize that you need to learn how to weigh information resources, and recognize that you may not always know how to interpret them correctly. Here are two examples using hypothetical articles:

      • Probably Good:

        Patient: Dr. Smith, I did want to ask you about something I read the other day - it's this article on Hodgkin's from the Journal of Clinical Oncology. [hands dr the article] It discusses a retrospective study of 200 patients with Hodgkin's who were treated with MOPP-ABVD, ABVD, MOPP, or ABVD plus radiation, and found that patients treated with MOPP or MOPP-ABVD had a higher rate of leukemia. I know you mentioned several possible complications of treatment when we started, but refresh my memory - will I be at increased risk of developing leukemia after my treatment?

      • Probably Bad:

        Patient: Dr. Smith, I saw something in this paper the other day - oh, I can't remember the name; I read it in the checkout at Kruger - that mentioned that Hodgkin's could be the world's first contagious cancer. It scared me! Am I infecting all my friends?

        Sounds silly, I know, guys. But it is NOT funny. In the 1970s that kind of press is exactly what created problems for many Hodgkin's patients, and we feel the ripple effects indirectly even today. You should never feel that a question is too dumb or too silly to ask your doctor, but you should also consider the credibility of the source.

        An important issue with many doctors and patients is the use of Internet information, including listserv postings. This is a rather touchy area. Many patients feel quite upset and even betrayed by doctors who turn up their noses at these things, but try to look at the other side of the coin. It is not uncommon for patients to come in with hearsay from the Net or from friends and family about alternatives such as Laetrile that have been shown to have no benefit and definite risks. Imagine that you had spent four years of long days and nights in med school, then three to four years as an intern/resident working long hours, nights, weekends, etc. in the hospital, answering to the demands of attending physicians, fellows, and older residents, sometimes sacrificing the one hour of sleep you had a chance to get so you could read up on a particular treatment or condition to look smart the next morning on rounds, then three years as a fellow, increasing taking on the demands of an attending's role yet having the pressure of doing your best so someone will want you as an attending in their hem/onc program, getting an attending post and being the junior dr, with associated attending-level scut work. . .and by the time you've been in this the number of years most of our hematologist have, you've lost enough patients to fill a large graveyard or two. Often there's no time to mourn the loss of some very nice people - there's too much work to be done; there's little time to spend with your family or in recreation because you're always getting beeped or called - Think about this sample day, which might really happen to one of these attendings.

        7 a.m. - Start morning rounds with housestaff, keeping it quick so you can finish in time for your packed-out morning clinic. Discuss patients, see patients, talk about some teaching points with the housestaff, try to find the case manager, patients' nurses, pharmacist, etc. when they step away for a moment because you need them there to answer questions, etc. Finish up and summarize plan for the day, reviewing new admits incoming, and hurry off to clinic.

        8 a.m. - Stop by office and grab clinic paperwork. You already have four phone messages. Call back one urgent call, tell patient to come in and get a couple units of packed cells, tell secretary what to do with the other three (I'll call her back; tell him I never got that piece of paper; last time I saw Mr. Smith was yesterday and he's doing OK, to return to clinic in two weeks. . .), get beeped, answer beep, ask house officer to re-check that lab value, dash off to clinic.

        8:20 a.m. - Clinic time. Patient, patient, patient, patient, patient, patient, beep & answer, patient, patient, beep & answer, patient, patient, patient, beep & answer, beep & answer, patient, patient, patient, patient, beep & answer, patient, beep & answer, patient, patient. Lunch? What lunch? Who has time for lunch?

        1:00 p.m. - Go upstairs and do teaching conference with housestaff, discussing various conditions in hem/onc, prognostic variables, treatments, etc. Answer their questions. Go over the current state of affairs and discuss a few patients who're having various problems.

        1:50 p.m. - Stop by office again, check messages, return calls, try to leave, get beeped, answer beep, try again, phone rings/answer it, try again, get beeped, answer beep, finally get out the door.

        2:20 p.m. - Back to clinic for another lovely afternoon - patient, patient, beep & answer, patient, beep & answer, patient, patient, patient.

        4:00 p.m. - Back to office. Review and return messages, deal with mail sorted by secretary, sign letters, dictation, etc., etc.

        5:15 p.m. - Leave. Get beeped, answer it. Get beeped again, answer that - tell pt to call if his temp goes over 102, get beeped again, tell house officer to admit the pt she's calling about.

        6:15 p.m. - Arrive home, have dinner with family.

        7:00 p.m. - Get beeped to come back in. Go back to hospital.

        8:30 p.m. - Go back home.

        11:00 p.m. - About half an hour into sleep, get beeped again. Manage to give the necessary advice, go back to sleep.

        12:30 a.m. - Beeped again. Have to go back in.

        2:45 a.m. - Go back home and try to go back to sleep.

        5:30 a.m. - Get up to start the whole thing over again.

        See why they aren't always patient? I know they make a choice in becoming doctors, but still. . . Now imagine doing all that and, during clinic, having a patient tell you that s/he read about so and so on the Hodgkin's list or the web and look skeptical when you warn them to take Net resources with a very large grain of salt. What do you know? You're just the doctor.

        I'm a BIG advocate that drs shouldn't play God, and that patients should get off their knees. But there is also a way to take that too far. Respect your dr's expertise and try to work with him or her rather than against. Often it's best to back the information with credible sources, which is why I try to say things that can be verified in standard, well-respected stuff like DeVita and Wintrobe. Also, most drs don't realize that this particular group tends to be more of a show-me-the-NEJM-paper, don't throw out the chemo that could save you and take essiac instead kind of crowd. If you let them know that participating in the list provides support from others with Hodgkin's while encouraging you to take traditional medicine seriously, they're less likely to frown over it. Think about it - as a hematologist, you know that the treatment you can give this patient has an excellent chance at buying them long-term survival, and very possibly cure. How would you feel in this case if that patient then refused the one thing that you know s/he'll die without? It's like having your child refuse the medicine that you know s/he needs - it is very upsetting. Be prepared to let your dr know that you check out sources carefully and thoroughly and that you are with him 100% on this treatment - if this is true. For me, this always makes for a better working relationship.

        In evaluating Net resources, think about the following: (a) How current is the information? (b) Can you verify the info with a reliable source? (i.e., can you take the material discussed in a posting and find basically the same stuff in DeVita?) (c) Authority: who's the info from and who are they? Is there sufficient evidence that they are who they claim to be? These are NOT always necessary with certain things - most symptom relief tips aren't necessarily something you'd do this with, such as the use of Gatorade (which, BTW, I agree wholeheartedly with!). But for things like results of ABVD therapy, etc., unless the poster or source says that this is an observation of theirs - an anecdotal report - you should often be able to find out where that info comes from and verify it. It's just a rule of thumb.

    • Try not to panic or start sounding drastic. If you sound like you're about to quit chemo on the spot while you're asking about that leukemia article, chances are good that your dr is going to be more concerned about trying to keep you on track with your chemo and may try to discourage you from reading. Remember that the bottom line of anything is that no matter how much you learn about Hodgkin's, you must have proper treatment or you will die. The battle is dangerous enough without letting yourself get distracted. If you find that you can't bear having chemo dripped into your port-a-cath or line week after week with the thought of secondary cancers or cardiomyopathy in your head, you may need to stop reading. After all, your dr will monitor you for treatment sequelae, and you can ask him/her what signs and symptoms should concern you; with a good hematologist you won't have to read to learn what to watch for, and learning about Hodgkin's is not worth it if it keeps you from getting the care you need and feeling as safe as you can. In his Karnofsky Memorial Lecture, near- patron saint of hem/onc Vincent DeVita said, "The most important consequence of chemotherapy in Hodgkin's disease is its cure." Translation: Side effects and late effects - and causes of HD itself - are important issues. However, the most important objective is to help you survive. (Actually, after multiple recurrences, the life is a major issue, but you get the picture.) Dead people don't experience side effects.

    • Be honest. It may help to discuss up front why you want to read about Hodgkin's, and to let your dr know how it relates to him/her, if at all. It can go a long way to say something like this: Dr. Smith, I really have a lot of faith in you, and I see this as a partnership where you do what you can to help me and where I do all I can to help myself. For me, I feel more involved if I learn about what's going on, so I'd like to read more about Hodgkin's and its treatment. It's not a reflection of my confidence in you, just of my need to understand things. I promise I'll discuss my reading with you instead of jumping to conclusions, and I'd welcome any advice you have about what to read and how to pursue this." Your dr may need that reassurance that you aren't questioning his/her recommendations, and s/he may have some good tips for your research. My first hematologist (no longer my dr because of geographical and pediatric/adult differences, not because I don't think the world of him) told me early on that if I was going to read, that was fine, but that anything older than the last year or two was probably going to be out of date, and that it was always a good idea to ask him if I was concerned about how something applied to me. Once I came in very upset over a little book from the school library that portrayed a person with Hodgkin's who died and which talked about MOPP chemo, never mentioning ABVD. (Yes, this was nonfiction.) He looked at it with me and pointed out that the copyright date was 1980, which meant that the writing was probably 1979, and that ABVD really wasn't around/in use until around 1980; in fact, it wasn't used then as much as today (1988). He also explained that while MOPP was still around, it was an older protocol and that they felt ABVD would, for me, offer a better chance of remission with fewer side effects. I now know that that decision was exactly right. With MOPP instead of ABVD, there's a considerable chance I would not be able to have children, and I probably would even have had more problems with nausea and vomiting during treatment (I had more than enough problem with that as it was). I never felt that I was kept in the dark, because my hematologist answered my questions. To me, that's probably why I deal with medical information for a living now. . .and why I have such a good rapport with my current hematologist. Incidentally, when changing drs, this may be something you wish to consider - I specifically mentioned to my hematologist that I wished to transfer to a hematologist who would be comfortable with my reading and list of questions, who wouldn't try to brush me off but would answer my questions the way he always did. The one he mentioned is exactly how I hoped he'd be and is always great about answering my questions or discussing the literature with me. I really feel that we work more as a team this way. That's all for part II

    -- Kimbra Wilder <Kimbra.Wilder@mcmail.vanderbilt.edu>


6.6  Christina's hospital tips

    Lots of people lately have written that they or their loved ones will be having a stem cell transplant soon. Being the warped sort of person that I am, I didn't find my month-long stay in the hospital all that bad--most of my days were quite peaceful and uneventful. Here are some of the things that helped me.

    1. Cool pajamas! (and lots of 'em) They're softer and more comfy than a hospital gown, they cover your butt, and they make you feel like a human being rather than just a patient. My catheter emerged neatly between buttons number 2 and 3 on my PJ top.I personally like the cotton knit ones from Victoria's Secret and J.Crew and Macy's have good collections for men (I'm afraid I have a long history of seeking out silly pajamas for my poor husband). I also visited one gentleman that had a Basil Rathbone-esque smoking jacket-style robe that made him look quite dashing...Don't forget the slippers--ones that you can slide in and out of easily--and a laundry bag.

    2. A couple little knit caps--sort of like the kind babies wear. My poor little bald head got cold even when the rest of me was warm and toasty under the blankets (I actually used these when I lost my hair before I went into the hospital because our house tends to get pretty cold at night). they were especially nice on the days I had chills.

    3. Stuff to put on the walls. Photos, prints, children's drawings, colorful drawings--the brighter the better! I also hung a bulletin board with a calendar for recording my treatment schedule and my blood counts (it was really nice to watch them go up!) Cards, photos and origami got posted there too. Move things around every so often for a change of scenery.

    4. An answering machine for when you're cranky, sleeping or visiting with someone else.

    5. A music source. I had a CD player with a remote and lots of CDs, most of them pretty mellow, but with perkier options as well. My husband bought me some "healing sounds" new age CDs but I found them kind of annoying. Bring stuff you know you like.

    6. Easy reading. I love crosswords but didn't have the mental acuity to tackle them at the time, nor was I up for heaving reading. Detective thrillers and trashy romances worked best for me.

    7. A camera (disposable or otherwise). I took lots of photos of the friends who came to visit me (and one of my doctors who was particularly handsome!). My husband also took some shots down in the donor room when some friends were donating platelets for me.

    8. Disguises. Okay, this isn't a necessity but it made things fun--my husband bought clown noses and Groucho Marx glasses and I sacrificed an eyeliner and a lipstick--I was in the hospital during flu season so everyone had to wear masks--the pictures of friends with big noses and bright smiles drawn on their masks are priceless. (as is the one of the aforementioned doc and his resident wearing Groucho Marx noses!)

    9. Home videos--they remind you of the people who love you and how much you have to live for.

    10. Stuff to make the room smell nice. I occasionally soaked my feet in a basin of warm water with a touch of rosemary/sage oil. made my feet feel great and my room smell wonderful. Someone also gave me some yummy-smelling lotion that I'd use on my legs after showering since the antibacterial soap I had to use tended to dry out my skin.

    11. Paper and writing utensils. Good for writing letters, keeping track of questions for the doctor, figuring out what the TV channels are, writing lists of things you want your sweetie to bring from home...

    I did have a computer in my room, but never touched it--I didn't have the patience or the reflexes for computer games and couldn't be bothered to figure out how to use my calling card number on the computer to dial up for my email. My husband did send out an email update from home to my friends and relatives every few days--it was the easiest way to keep everyone posted. -- Christina McKittrick <mckittri@axon.rutgers.edu>


6.7  Emotional support

What's a friend to say?

    I've come to one conclusion about how family and friends react to our disease - it's hard for everyone that has to just sit by and watch. Especially since most of us are really quite young to be hit with something like cancer. We have the benefit (yes, believe it or not, benefit) of being actively involved in treatment. We are doing something about it. We are fighting it every day. We have the best potential to affect how we feel. Our spouses, parents, siblings, friends, etc., on the other hand are helpless. They don't know what to do. It's kind of like standing naked in front of a room full of strangers. What do you do with your hands?!?!?! (not that such a situation has ever presented itself to me...)

    Anyway, it's kind of uncomfortable. Their thinking "Do I ask about it?", "Should I offer to help?", "Is there really anything I can do?", "Should I just stay out of the way for a while since they have so much to deal with?". Their list of questions, concerns, and worries is as never ending as ours is. Again, to our benefit, we know we can ask our list to the onc. Our friends don't know if they can ask us, though, or if it will just upset us.

    I have a great relationship with my brother-in-law. He harasses the h*** out of me, and I dish right back with gravy :) Shortly after I began chemo, my husband and I had the opportunity to go back up to Michigan and visit our families. While in Kalamazoo we stayed with my brother-in-law. He was so disgustingly sweet and pleasant the entire time we were there. I tried so hard to instigate a smart aleck comment from him and got nothing. Finally I had to say to him, "Terry, I'm not dying!!!!! If you don't start acting normal and treating me like the garbage you've always told me I am, I'm going to have to beat you up! And don't think I can't do it pipsqueak!!!" [He's 6ft tall, muscle; I'm 5'4", kind of boney]. That broke the ice for him to ask me all of the questions he had. After that he went back to treating me like his sister-in-law. Finally!

    Then there was my best friend of 10 years who just stopped writing and calling. Finally I called her every half hour until she got home and told her I needed to tell her all about HD so that she knew what was happening to me because I needed her support more than ever. Once we talked everything through and she asked me all about losing my hair, and getting tired, and using HD to my advantage so that my husband would do the dishes :) [just checking to see if you're still reading], she suddenly knew what to say and when I needed to hear it.

    The point to this rambling post is this... Knowledge is the key and the power. We have to work to inform our friends and family - even if we have to shove it down their throats forcefully. Once they understand HD, our prognosis, what's being done about it, and how we feel about all of this, they suddenly find the words and know what to say. In other words, they stop treating us like porcelain dolls that will crack if they tip toe past us...... -- Sue Buist <suejimbuist@yahoo.com>

How can I support my friend with Hodgkin's Disease?

    Question: I have a friend who was recently diagnosed with Hodgkin's. I am trying to be here for him as much as possible, but he is pulling away. Do I persist or let him have his peace?

    Your friend is lucky to have someone like you in his life!! At this point, my distinctly inexpert advice is to hang loose, but periodically remind your friend (in a low key way) that your help and counsel are available.

    Let me try to give you some perspective on where he is right now. If he has just been diagnosed, he is in shock. The shock may be even greater if he is one of those many Hodgkin's patients who did not really feel sick before the disease was found. So, he doesn't know what he needs, or even IF he needs, from his friends. Once he goes through staging and all that, he will start treatment. Most Hodgkin's patients are in pretty good shape at the beginning of treatment. Two days after my first chemo, I actually felt BETTER than before the treatment.

    BUT, Hodgkin's treatments are progressively debilitating. That is, as they wear on, the wear the patient down. The patient gets more pains, more aches, more tiredness, more nausea, etc. In the beginning, the patient doesn't need a lot of help so he turns help away. But, by the time he really needs it, most people have gotten tired of asking.

    Here is where you come in. If you have consistently been there, reminding him that you are willing and able to help, you can ride to the rescue when he really needs you. You can go to the store for jello and Gatorade when he is too sick and tired to go, etc.

    Just be there. Call him once or twice a week and say, "Just seeing how you are doing. Is there anything I can do for you? All you have to do is let me know."

    Hang in there and don't get discouraged. Often, a man doesn't need to lean on a walking stick until near the end of a long journey. -- H. Paul Honsinger <honsinger@martinautomotive.com>

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