Hypo

Hello! It has been such a long time since I last updated you all. Let's see...


I have returned from vacation and back to reality, as in, a full work week! It's hard enough coming back to work after vacation, but I have also been off of all of my thyroid meds for a week and a half now, and as the effects of hypothyroidism start to creep in, every day gets a little harder. In case you don't know all of the fun symptoms, here are some:

• Fatigue
• Weight gain
• Weakness
• Depression
• Memory problems
• Constipation
• Hair loss
• Dry skin
• Cold intolerance

So far, I'm actually feeling better than I had anticipated. I am able to get through each day, but by 9pm it's hard to stay awake and if I lay down I'll be out in about 2 seconds! I feel quite bloated but I've been able to avoid the scale so far, so I'm not sure how much weight I've gained. My doctor assured me it is only water weight and will come off quickly once I'm back on my levothyroxine. I've definitely dodged the depression, but I can't remember if I have any memory loss ;-) 

Yesterday marked Day 1 of my low-iodine diet. It is much more strict than you'd imagine! No dairy or egg yolks allowed (egg whites okay), and only 6 ounces of meat per day. Fortunately for me, I'm already vegan so I don't have to worry about that. No processed foods, as it's not clear whether or not they contain iodine (it isn't listed on nutrition labels). No restaurant food for that same reason. So that leaves me with an abundance of fruits, vegetables, grains, nuts, legumes, and seeds to eat! Even with my normal diet I try to stick to whole foods and nothing processed, but this is a wake up to have to make every simple ingredient from scratch and not open any cans of beans or tomatoes. I'm using this as an opportunity to take on a mostly raw diet. It will be like a cleanse. I downloaded a cookbook from a thyroid cancer website expecting to find great tips. Instead, I was shocked at how unhealthy most of the recipes were. Flour, sugar, and potatoes obviously are acceptable elements to this diet!

I might have mentioned this before, but I have been very inspired by the work of Kris Carr, a cancer survivor who has written multiple books and filmed a documentary called Crazy Sexy Cancer. She wrote a great book on cancer prevention called Crazy Sexy Diet. Check it out! I have been very inspired in the recent weeks by people around be beginning a vegetarian lifestyle. I'm excited to see where it will take them. 

I hope you all enjoy your beautiful Memorial Day weekend! I have my RAI diagnostic dose on Friday, followed by my first full body scan on Monday, June 6. I am very anxious for those results but confident that they will be great :)

xoxo, 

Lisa

Hello from Virginia Beach

I'm writing you all from vacation here in Virginia Beach. It's so nice to get some sunshine and if you know me you know I love the beach! We spent all day Sunday riding insane roller coasters at Busch Gardens. One of my friends asked if roller coasters cure cancer, and they might not, but fun and happiness sure might!

I have been off of my Levoxyl for a while now and every day I feel more and more different. I'm in a bit of a fog and the strangest part is I no longer have an appetite. I never feel hungry or full. I just have to eat when everyone else does to keep my blood sugars up. I will have to keep decreasing my portion size since I have no metabolism and I don't want to gain more weight than I have to. Today is my last day getting to take Cytomel, which provides some temporary energy. I'm already getting more forgetful, so I'm sorry if I do anything dumb in the upcoming weeks ;-)

Here's my calendar of appointments so you'll know what I'm up to:

May 18 - Stop Cytomel
May 27- Start low iodine diet
June 3 - Bloodwork & RAI test dose at UW
June 6 - Full body scan
June 8 - Inpatient RAI treatment at UW
June 16 - Full body scan

Ok, back to the beach for some sunbathing!

xoxo,

Lisa

Location:Virginia Beach,United States

Seattle Cancer Care Alliance

Hello my lovelies,

Yesterday I had a consult with an oncologist at the Seattle Cancer Care Alliance. I loved the hospital, the staff, and the doctor! Everyone was so caring and compassionate, they have a great facility (with quite a view of Lake Union) and my doctor was very thorough and spent probably about an hour going over everything with me. Most doctors these days seem so rushed (and I know the Virginia Mason system strives to be efficient, which equals rushed), but Dr. Mankoff was in no hurry and kept asking if I had any questions.

Here's the plan: I am going to transfer care there. Even though my insurance covers at a lower rate, I think that quality care is most definitely worth the extra cost. They want to give me the highest dose of RAI, and this will be an inpatient procedure. I have to be in isolation in a room with lead walls and visitors must talk to me through a glass window (sounds like prison!). Anything I touch has to be disposed of when I'm discharged, so I can't wear my own clothes or bring my laptop or cell phone. I will be there for 2 to 4 days. I'll be at the UW hospital if you want to come visit me in prison! This has to be at least two months after my last CT with contrast, as the contrast iodine has to be out of my system so that my cancer cells will take up the radioactive iodine. It looks like it will probably be around June 8.

Before I do the RAI I have to be off of Levoxyl (my thyroid hormone medication) for at least 4 weeks so that my TSH level gets above 30!! Dr. Mankoff warned me that besides feeling like a slug, I will also quickly gain a lot of water weight and my face will look like someone tied a very tight noose around my neck. Oh boy, can't wait :) No one is allowed to come near me with a camera! The RAI side effects include nausea, but fortunately they have good meds to offer me for that. The salivary glands also take up iodine, so they usually swell and cause pain and difficulty swallowing and dry mouth. Good thing I like lemon drops. Some patients continue to suffer from dry mouth for the rest of their lives. Other risks include leukemia, but the risk is only 0.2 - 0.3% per ten years, so unless I live to 500 it isn't a very significant risk. (Someone forgot to tell him that I do plan to live past 500!)

After my RAI, he does recommend external radiation. I will have a consult with a radiation oncologist and I'm not making any decisions yet on whether or not I will do that. I'm going to focus on one thing at a time, and right now it's vacation that I'm leaving for on Friday! Dreaming of Atlantic beaches, dozing in the sunshine, and devouring book after book.

Happy Mothers Day to the most fabulous mom in the world (mine!), and to all of you other mommies. You have my utmost adoration!

xoxo,

Rosey (that's for you, mommybrat)

Updates

Hello my lovely friends & family...


I have been a bit disappointed the past couple of days because my doctors have advised that I do external radiation after I complete my RAI treatment. They say that it will probably decrease my chances of recurrence by about half. But, the risks of radiation scare me: Hodgkin's lymphoma, burns, problems with swallowing, damage to my vocal chords... If it were to a different body part I likely would not be so against it, but my neck is such a vulnerable location. I want to wait until my post-ablation scan (which will be one week after my RAI treatment) to see how hard my doctors push for me to do radiation and make a decision then.


But, on a happier note, through family connections I was able to get an appointment with an oncologist at the Seattle Cancer Care Alliance, who is supposed to be very good and came highly recommended from the chair of medicine at UW. Thank you, Uncle Roger and Aunt Noel! That appointment will be this Friday, May 6th. I am considering transferring care there. Even though my insurance will cover at a lower rate, I think for the less common cancers it is important to be treated by the very best and at a cancer hospital. I am anxious to hear this doctor's opinion and see how I feel about this hospital. Already, just talking with the coordinators who helped me get scheduled, I feel that this hospital is far more compassionate and caring than Virginia Mason. These people are used to dealing with cancer patients and I felt like they really understood me. 


Now, off to enjoy this beautifully sunny weekend which will include a healing massage and hopefully lots of time at the park with my dog! 


xoxo,


Lisa

Transformations

I just got back from a great and very challenging yoga class and feel so balanced. I genuinely think that yoga helps people to heal.


After scathing about the naturopath the other day, I should add that he did leave me with one inspirational comment. He guessed {correctly} that part of me was wondering why I try so hard to take care of myself just to get cancer anyway. He said that we can control a lot through diet and lifestyle, but some things and environmental factors are beyond our control. He told me that one thing he knows is that if I didn't do all I do to take care of myself, my cancer would be a lot worse and I would heal much slower. I have reflected on this a lot over the past two days and have really come to peace with the fact that I have cancer. The "why me? why me? what the f***?" that kept running through my head before has transformed into a gratefulness that I was raised with a conscience for health and a drive to learn and an openness change and knowledge. Thank you to every person in my life who has fueled those traits.


Peace, love, and vegetables,


Lisa Rose

Good news

Today Jesse took me to my first post-op visit with my surgeon, Dr. Glenn. The doctor was thrilled with my healing and cleared me to go back to the gym, even though he had originally thought I'd have to take a month off from exercising. He also said I don't even have to come back for my second post-op visit! Jesse and I were so happy to finally get some good news.


Dr. Glenn did push for me to do external radiation - he says that my risk of recurrence is high and of course we want to avoid further surgeries. The official recommendation will be decided upon tomorrow, but he did advise that I at least have a consult with a radiation oncologist.


I have been alerted that the "donate" button on the sidebar does not work. I'm looking into it and if any of you computer nerds can help me out I would appreciate it :)


Wishing you all a wonderful rest of your week.


xoxo,


Lisa

Naturopath

Hello friends,

I hope your weather isn't as miserable as it is here! The sun is such a tease, giving us that beautiful Saturday and now it's back to rain, rain, rain, as far as the weatherman can see.

Today my darling friend Cherl took me to my appointment with a naturopath. The appointment really didn't feel productive to me. After a long review of symptoms, he told me that I'm really healthy (duh, I knew that), and that I'm doing everything right. However, he wasn't a huge fan of the vegan thing and told me that I am not getting and absorbing enough minerals. Isn't it amazing that he knows that without even checking my blood levels?! {Which are all within normal range, by the way!} After citing claims from the USDA about the decreasing amounts of nutrients in vegetables and plants {who funds the USDA? why, the dairy industry, of course!}, he wrote me a prescription for a multivitamin and a calcium with magnesium supplement. Perhaps it couldn't hurt to take these supplements {or could it?}, but I don't think I needed to see a doctor to tell me this. If anyone knows a vegan naturopath in Seattle, or at least one who is knowledgable about vegan diets, please send me info! He did share good information about the dangers of high levels of antioxidants in the diet during radiation & chemo. So I will have to take a vacay from my delicious daily green juice during that part of my treatment. 

You are all so amazing and supportive. My inbox has been flooded with e-mails and referrals, and I apologize if I am slow to respond. Between all of these appointments and working full time I haven't been as good about writing back as I should be. I really, really appreciate all of your support and information you share.

Lots of love!

Lisa