Doctors who don't understand...

Hi gang. So today (April 3rd) is my birthday....well yesterday at this point because it is after mid-night. I had a fabulous day, except that my hubby is in Asia for work so we couldn't celebrate together. I went for a beautiful bike ride with one of my dearest friends, played outside with my boys all afternoon and then went out to dinner with 8 girlfriends for a 'girls night out" celebration. I juiced all day because I knew I was heading out to dinner, but managed to stay well in control of my CSdiet and food combining at dinner. I did celebrate with 2 drinks and literally 2 bites of dessert...woo-hoo!

Here's my point. Earlier today I shared with my oncologist at Dana Farber how good I have been feeling, my dietary changes over the last 7-8 months, my continued exercise regimen etc. So, I am feeling really good and wanted to share it. After all it was my birthday and I had survived BRcancer, chemo, radiation, left totally boobless after mast. surgery w/out reconstruction options, hair loss which is taking forever to grow in, a mountain of bills, medically induced menopause, all the fun side effects and some serious weight gain. With all of that I am still feeling good and have been living with presence and smiles, largely due to this fabulous place. Really, I can say I have a fab. life and really mean it! Well, all I got back from him was that he was going to have his NP look into wheat grass to make sure it isn't counter-acting with the ovary suppression medication that I am taking. (I had ER+ breast cancer and on a clinical trial for ovary suppression.) I know he has to consider all aspect of medicine and I do have a high regard for his expertise, (he is the top doc at DF for breast cancer and I feel very lucky to have him on my healing team)....but couldn't he just be happy for me. Ugh, I am working so hard for wellness on a cellular level and I feel like I was just squashed like one of the cucumbers that I put through my juicer. What could be bad about wheatgrass and what about it could POSSIBLY counteract ovary suppression?!?!?!?! What is it about some of the most brilliant minds that can't think outside the box? What is it that they are afraid of? Maybe I am being over sensitive, but don't squish my cucumber!

By the way, he tells me that my weight gain is probably due to chemo....any thought on that out there? (Major chemo ended in January '07 and herceptin ended in Dec. '07. ) The weight started to come on about 4 months after starting the ovary suppression....makes sense to me.

Anyone else have experiences where their docs. just don't quite understand?!

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Permalink Reply by farmgirlErin on April 4, 2008 at 12:45am: Yeah totally. And a great topic for me as I had a frustrating day with the oncologist today as well. I just keep telling myself he has seen LOTS of cancer, many cases worse than mine, and looking at it from the "outside," sort of from a statistics viewpoint. He doesn't understand 'why' I am still fatigued when my last treatment was in December. I still have tumors (which, thank God, are shrinking) and he told me the chances of them growing again are "close to 100%." Also said my labs looked "really good," but when I looked at the results of my most recent bone marrow biopsy it said "low storage iron." WTF gives? Helllloooo, I might be a natural blond, but I really thought low iron can cause fatigue? Anyone? Just typing about it here causes me to get more pissed off all over again so I'm going to stop before I start to vent incoherently....
On the bright side, by taking charge of some things for myself, and thanks to ALL of you here, I have been able to get better. Thank-you everyone for all your ideas, suggestions and sharing of experience as that has been one of the most helpful things ever.; ▶ Reply to This

Permalink Reply by farmgirlErin on April 4, 2008 at 12:47am: Oh by the way I almost forgot, HAPPY BIRTHDAY GORGEOUS! and CONGRATULATIONS!; ▶ Reply to This

Permalink Reply by the gaudy goddess on April 4, 2008 at 12:59am: HAPPY BIRTHDAY!!! I can soooooo feel your pain. My latest WTF is with my cardiologist. I am fatigued out the wazoo and get even more fatigued when I excersise....I do it anyway because I know that I have too. Then, they asked me to up my excercise by 10-15 minutes gradually. Okay, so far, I get it. Then, I mention helping with lawn work a couple of weekends ago and how it made me feel but I knew I needed the activity so I went on with it and just really breathed through the pain.....then they said not to overdo it, that I need to listen to my body....next I voiced my concern about wanting to lose weight and it just won't come off. They said that it won't unless I get really vigorous with cardio.....BTW....this is all in the same doctors visit and in exactly that order....with a few things thrown in between. And to top it off.....they voiced some concerns about my high doses of vitamin D the onc put me on combined with the heart medication they put me on and all in conjuction with my supplements that the last visit the very same cardiologist who is supposed to be the best in the city....okayed for me to take.; ▶ Reply to This

Permalink Reply by Raw Warrior on April 4, 2008 at 2:13am: Hi Laura,

Happy Belated Birthday! I'm so glad that you had a great day with your kids and a great night out. You do DESERVE it!!

Sorry about the doc... what can I say here? I think some need to be educated about how to be more caring and to use some empathy and compassion in all their interactions as a professional. I've had to tell a few docs that they need to be more positive with their patients and to offer even a glimmer of HOPE instead of all doom and gloom. Encouragement costs nothing and it goes a very long way especially coming from your health professional.

Do you what know what the ovary suppressor drug is? This is probably the culprit as you've already guessed.
Did they not give you a list of side effects to watch for? This is something that he should HAVE his NP deal with (IMO) instead!

Cheers to your excellent progress and to healthy living and well-BEing! I'll raise a glass of yummy wheatgrass to you tomorrow morning!; ▶ Reply to This

Permalink Reply by LauraB on April 4, 2008 at 7:15am: Hey loves, thanks for sharing your stories. Should have named the discussions WTF w/doctors. So please let me preface again, I feel very lucky to under the care of this doctor. I also feel lucky to have another local doctor who is western trained but SO knowledgeable in eastern and alternative care. So after I posted this blog I had another email round with my onco. doctor. He said he was concerned with the wheat grass for the possibility of "that most natural substances that help hot flashes contain plant estrogen-like substances" and that may effect the ovary suppression. Anyone aware of this....Kris any insight? I know there are testimonials about increased fertility with WG, but there are testimonials about so many fabulous things with WG. My biggest fear is that he is going to advise me stop the ovary suppression shots, which is a clinical trial (SOFT trial.) At that point, if that happens I would have to make a long hard decision which way to go for myself.

He also said "weight gain after chemo is complex and can take months. This may also be due to hormonal therapy, but not necessarily so simple." This again comes after a similar conversation with him as the Guady Goddess above.....seriously! He says, oh so simply, eat less and exercise more.....hello, doing that and then some.....blah blah blah is all I hear sometimes....so frustrating.

My natur-path and I did have a conversation the other day that helped me understand. The oncologist, especially the ones at the major hospitals that are so research based see only that, research. Although there is something to be said for research, in fact there is A LOT to be said about research (it probably saved my life), there is something majorly said about alternative care being an important component of healing......oh I wish the worlds would really collide.

Have a very positive green day and don't let this discussion get you pissed, let the venting help blow it out and feel relieved and energized. Go have a green drink and be merry!
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Permalink Reply by Goony on April 4, 2008 at 7:43am: Hey Laura! Denenenenene, You say it's your Birthday! Happpy Birthday! I spent my birthday at the oncologists office too and I completely understand your frustration......and I don't even have canser! I went with my FIL to his last oncology appt.. I wanted my FIL to forgo more chemo and try juicing and diet control. I didn't think he could handle more chemo. The doc gave us the speach about how all the vitamins from the juice could counteract the chemo, and bla bla bla, basically talked my FIL out of thinking outside of the box. Got a treatment that day, 6 days later he passed away. I was furious with the doc. He wouldn't think outside of the box either. All he knows is chemo. I even expressed my concern with chemo only being effective in 2% of late stage cancers, and he shrugged it off. Why? Because that's all he has in his black bag. He doesn't make money off of green juice, and diet control. You know your body better than anyone. If what you are doing is working, if you feel good, then stick with it. I think it is hard to find an oncologist that thinks outside the box.; ▶ Reply to This

Permalink Reply by Mariely Reyes on April 4, 2008 at 8:23am: I am right up there with you guys. When I was first diagnosed my aunts flew in to be withme through the first oncology appointment. They wanted me to juice, and have natural vitamins, so that my body would not be filled with all of the toxins from the chemo. My doc totally shut my aunts plan down. They were furious. I was so naive and scared that I went along with my doc, and decided not to juice. Well 6 months later, and 6 rounds of intensive chemo later they found out that my canser is chemo sensitive and does not respond to plation drugs.... Great all that chemo to just have it grow more. I decided that day of the relapse (with the help of CSC) that I was going to eat halthy, juice, and screw what the doc said about diets,a nd vitamins counteracting the canser. I see an alternative doc apart from my team of docs, and it help...keeps my mind sane; she is also is teaching me how to cook raw.

Just Breath...
Mariely; ▶ Reply to This

Permalink Reply by genie on April 4, 2008 at 8:17am: My onc. does surprisingly well at thinking outside the box, which is to say, he can do it a little bit! However, when it comes to alternative medicine, incl. herbs and supplements (and I think wheat grass juice is concentrated enough to nearly qualify as a supplement) we have an unspoken policy: DON'T ASK, DON'T TELL.

And I never, ever tell any of the other medical folks from chemo nurses to nurse practitioners, and especially not the cancer center "nutritionist." Why not tell? I don't have the energy to argue with them. They aren't going to change their minds. You gotta pick your fights!

How my onc is open -- when I was initially diagnosed and he recommended HDR (high dose vaginal rads), and I declined, he not only didn't get mad, he was able to see the logic in my reasons for turning it down. Great! Then, later, when a hidden malignant lymph node was found and I had to have chemo, he planned six rounds, which was the protocol he helped to establish for advanced endometrial canser when he was at Yale. When, after four rounds, my husband came up with some research to show that four could be enough, he happily went along with that, too, assuming that I had a clean pet scan (which I did).

These are rather monumental things for an ivy-league trained onc to agree to, but the fact still remains that he would rather not even know about the other stuff I do.; ▶ Reply to This

Permalink Reply by Sherry on April 4, 2008 at 9:07am: Laura - happy birthday girl - way to get out there and celebrate! For the most part, my team at HUP has been incredibly supportive whenever I've mentioned diet/supplements and they explained in detail their reasons for avoiding certain foods/vitamins when I was going through chemo treatments. Alot of their advice comes from studies of other patients and my treatment is based on a clinical trial still only a few years out, so there are just some things for which they do not have answers....so its my opinion they kind of stick with what they know rather than guess. Since CAM and the medical world are only slowly coming together - its all a part of the big experiment of life. Just remember, you do know your body best - so stand your ground when you need to and choose your battles wisely.; ▶ Reply to This