I had chemo yesterday. Afterward Kelly and I got some lunch and headed to the video store. I was planning a long quiet evening in bed with maybe a few episodes of scrubs on video. I feel into a deep sleep very soon after getting home. A nausea was present but not nearly as bad as weeks ago. I ate some cheese and crackers throughout the night. The family enjoyed a red lentil stew that Jenna brought over. Thank you Jenna. At different points through the night my kids came in the room and laid on the bed with me. Quiet and unobtrusive. Just laying there. I took some medicine as the night wore on but it was a manageable evening and actually nice in some ways. Chemo day means a little hush around the house. But they do not avoid me anymore like they did when I was on the bad chemo. I played with Tucker’s hair while we watched a cooking/travel show called No reservations. We both were very into New Zealand. All the food looked delicious but it was about this time that I needed more medicine.
My “sugar” counts have been very high every week. Dr. Demichele wants me to see an endocrinologist and get on some medicine to bring it down. It is not “diabetes” . I do not know any details other than my sugar is high. They said that the thirst that I have is part of the symptoms. I drink 2 gallons of water every day. I also have to pee all day long as a result. Day and night. That is why I am also very tired. I need to find a new internist/primary care doctor. My old one and I have to sever ties. I was pretty unhappy with her lack of knowledge regarding my cancer. Kelly says its not her fault nobody knows about IBC.
Nobody in La leche league ever mentioned it when we talked about breast infections. No lactation consultant or midwife ever gave me an indication that there was a cancer that mimicked the signs of a breast infection. To the contrary most if not all of the hundreds of discussions about breast infections indicated that many times they could be resolved without medical treatment. Try this. Try that. Then see the doctor for antibiotics. That’s what I did. Then weeks later I went on them again. Then I asked for an ultrasound to rule out a staph infection. Something I read about online while trying to diagnose myself.
But this is in the past. Maybe some day more people will know about IBC and pass the information on to women. No lump just pain and swelling can still be cancer. So I am on a mission to find a new doctor at University of Penn. who will work with me and send me to the endocrinologist, who will give me a pill and a diet plan no doubt to make my sugar counts normal. Oh joy.
I am still losing weight by the way. 6 lbs. last week. I am also exercising more and more. At physical therapy primarily, but it feels really good. And today is acupuncture which does not always feel good at first but has some lovely after effects. I feel very confident that this is a good routine. I feel positive about my care, my chemo, and my ability to spend some of week feeling a bit sick and most of it feeling well enough to get some things done. I am still not able to do it all. But this is the best I can do so far. Progress.
Im glad that your chemo went well-and will continue to pray for you and your family for peaceful, pain free (and nausea free!) days filled with kids and friends and love!
Andrea, I can’t believe how long it has been since I last saw you. Wow….I have always thought about you and your amazing children through the years….I can’t believe Bailey is ten. She was like 3 when I saw her last. I was more in disbelief when I found out recently that you have cancer. Adam and I have been overseas for a while now and just came home over Christmas, when we found out.
I have been reading your blog from the beginning. I could say I am amazed at how your are taking this on, but I was amazed when I first met you and seeing how awesome of a mother you were…I aspired to be a fraction as good as you.
So, amazing is a word that is synonymous with you.
I am so proud of how you are handling everything coming your way. I love how you still find humor in some terrible situations. I believe you have to keep your humor. My dad battled cancer that when found, was stage IV. We had some really dark moments that jokes and our usual dusfuntions got us out of. I swear most of the hospital thought we were nuts.
Anyway, I am babbling now. I am overwhelmed to find out that you are living with cancer, I would love to be of any help to you while Adam and I are back.
I have no idea how to contact you other than through here. Let me know.
When you feel up to it, I would love to see you. I can even give family haircuts like old times…Anything…I love you girl. I am praying for you and sending light and love.
Love,
Erin Shields
hi-
long time no see, but i read your blog everyday and youre always in my thoughts. The night I was supposed to bring you dinner, I got a terrible cold, so it is good you didn’t need any dinner. i know your immune system is not at its best.
I am so glad to hear that chemo wasn’t too bad. i’d like us to stop by in the next week- I miss seeing you, but this afternoon, we are off to Virginia to spend the weekend on the farm.
We love you-
Andrea,
You don’t know me….I only know of you what I’ve just spent the last 3 hours reading. I’m also an ‘unconventional’, mother of 5 children. with my 4 tattoos and 14 piercings. Their ages are 16(Daniel), 18(Samuel), 20(Sarah), 22(Gabriel), and 24(Hannah). I was married for 23 years and home schooled for 20 of those in a place called Rockford, IL….my husband divorced me 5 years ago. I do not have IBC, nor any type of cancer (well that I know of), to share stories or even empathize, but we are truly kindred spirits.
How I came to learn of you was through a good friend of mine who does have IBC, along with 3 other types of cancer. She was told of her diagnosis 2 days after her 50th birthday, in early August, 2007. She, like you, searched the internet for anything she could find on IBC….found mostly bad, but came across more and more ‘survivors’ as she kept up her search. She came across you about a month ago and couldn’t wait to share you with me! 🙂 She insisted that I read about you because we were so much alike. By the way, she thinks I’m a freak! 🙂 Yes, I’ve googled myself…yes, the years at home with my children were the absolute best years of my life…yes, my children and I hang out, we’re friends…yes I’m eccentric….yes I’m spiritual….and I’m so not a typical mid-western mother of 5…so I’ve been judged and ostracized…and so moved on in life! The things you say and the way you say them, well, it’s like they’re my words, my personality, my character…but they’re you! 🙂 I do agree, life is continuum of good/bad, happy/sad, fun/agonizing, events…it is our life and these are the events and moments that make up who we are. So I hestitate to say that I’m sorry for your plight, although I certainly am, but none of us has any idea the good that we’re reaping from the bad we’re experiencing, that we otherwise might miss out on, if the bad wasn’t there.
God Bless You and Yours……..maire brandon
Feel free to hit me back if you wish….I have added your site to my ‘favourites’, so I will regularly check in! BTW, my good friend’s name is Sandi Johnson and she’s on the caringbridge site. Also, if you’re curious, you can see me at myspace.com/mairejezebel.
….we’re all made of the same clay and we’re all in this together…….also, we’re all terminal, like it or not!
i guess it will get better as it goes along, hopefully but from your posts it sure seems that way : )
have a great weekend and enjoy the extra day with the kids!
love, leah
Hey babe, glad you are doing ok after chemo.
If you need a primary doc – drop me an email. I have a wonderful one. She’s right in town, never keeps me waiting long and is adorable to boot 🙂
HI Andrea:
Good to hear that each week, progress is made….and I concur with all the others….your spirit, positive attitude is over half the battle…in fighting this diagnosis.
I was a nurse for 23 years and I had never heard of IBC either…..so I am learning reading your posts. Thanks so much for sharing with all of us….it must be overwhelming at times to have so many people in your home, so to speak….with all your new, loyal fans and avid blog readers like myself….
Take care of yourself, hugs to all your family, and enjoy the long weekend with the kids….we are rooting for ya here in SC….Donna
Glad to hear chemo went ok for you. As always, you are in my prayers girl! Hugs!
Hi Andrea,
I came upon your website through the Ida Mae’s webebsite. I practice Chinese Medicine and will probably open a clinic in Fishtown within the next few months that will work on a sliding scale, and treat people in community type groups. I’m not trying to plug myself, I just helped my step mom deal with some side effects from chemo treatment for breast-cancer, and i think it could be a really nice adjunct therapy for you. If you want to talk about it feel free to send me an email- I wish you all the best in your path back to health, Jenny
Andrea,
Recently read your story in the local newspaper here in Lincoln, Ne. I can identify with you in many ways as your philosphy towards life is so much like my 20yr old daughter and also because I am a breast cancer survivor. Diagnosed 4 years ago this Feb w/ lobular breast cancer, estrogen pos, 6 lymph involvement @ the age of 36 and 1 year after my youngest was born.
Keep the spirit high as it seems that you do ….. this is the one thing that I learned can aid in the fight against this horrible disease.
Prayers and thoughts are being sent your way daily from Linc. NE.
Amy S.
oops- just read that you’re already doing acupuncture- that’s good- guess I should have read the whole thing first. If you aren’t using chinese herbs that could be helpful too. you’re the mom of the twins in the rock school video huh? my favorite part of that movie is where you’re getting them ready for a show, and you were drawing the ozzy tatoos on one’s hand and he wanted a pentagram on his forhead but you wouldn’t let him. what a cool mom! I think that’s you?..
Jenny, yes that is me and my twins in “Rock School”. And I love that part too if only because my boys were so little and cute. Thanks for commenting EVERYONE…All my love Andrea