today is crazy. our phones do not stop ringing. we are on the phone all morning with different doctors trying to get appts with hematology oncologists that people recommend and we are on and off the phone with my endocrinologists office to fax my records different places. it is nuts. sweet ava is and out of her exersaucer because we can not hold as we are on the phone and i am wanting to skype with my sisters, allison and becky back in mi. ah its nuts. even though she is ababy, she seems to sense something is not right. that breaks my heart. but i am thankful that she is so young. too young to remember. when i nursed her to bed last night, after hearing the news i started to crying thinking, ava needs to have a mom. then my mind quickly goes to imaging me telling her the story when she is older of when mommy was sick. that brought me peace. it is good to see my sisters faces and my three nephews. jack, wade, and drake. it started to become real for me though. at this point only family and some really close friends know whats going on because so much is up in the air. i keep saying that. i keep thinking that maybe all the drs are wrong and they read my x-ray and ultrasound wrong and how maybe i am making something out of nothing. denial. but i think that is normal.
its now 1pm and our sweet friend ally comes over to watch ava while we head to the hospital. we tell her whats going on and ask her to pray. on the way i tell justin..."i am so thankful we have ava. i know that i am going to fight harder because we have her." i do not say this part out loud, but i think, he would be ok, but ava needs her mom. i know her the best. i know each cry and each laugh. what would do without me? when we get there and are checking in i see justin's boss from Young Life in the waiting room and think, weird that he has an appt today too. ah, nope he was there to be with us. totally gift though. he sat with justin during my ct scan. got the scan. found out i was allergic to iodine. so we sit with an iv and get some medicine. we wait for the results. the nurse comes out and says the doctors are reading my results, but i need to get some blood work done. we do that and go home. scott prays with us. i have never felt more at peace in my life. since mondays news i felt so loved and protected.
worst news of the day came when i found out i could not nurse for 48 hours because of the iodine. i love nursing ava. it devastated me. now it is really real. what is going on is now impacting her. we get home and i go buy sucky formula. i stand in the aisle looking at all the choices. good thing i have a coupon for similac. so i got that. i give it to her and she loves it, of course. some good friends come over and bring dinner. we tell the story. we pray. we both remain on the phone non stop. my wonderful dr call me around 6pm and tells me that wet reading of the ct scan confirms what he suspected. since we can not see an oncologist until monday he says he will try and schedule a biopsy for wednesday. he tells me i can call him with any questions i have. wow. we lie in bed that night and pray. we sing the song oh love that will not let me go. i cry. i cant sleep. my mind is racing.
i get up early and go get my blood work done at the doctor's office. they had not been able to get me into an endo dr yet so they say they will call me. i get home and its 1015 and they call and say can you get to the dr by 11 and i say yes. justin works from home to stay with ava and i quick go to my appt. when i see the dr (who as of today is the best dr i have ever had in my life) he says we should do an ultrasound of my neck. i tell him my husband is leaving tomorrow for work and i am leaving thursday so we need this done asap. he is on it and gets me an appt for 2pm and orders everything STAT. i go home and we get a babysitter and we go to the hospital. get an ultrasound done and the tech was not super professional and says, your thyroid looks fine, but you do have two large masses on your neck, not sure what they are though. just so we all know...they are not supposed to tell you anything, a dr reads it and reports the findings. but anyways we get blood work done again b/c the dr wants it done faster so i do that at the hospital. we head home. get a call from dr on the way home to go back to the hospital and get a chest and neck x-ray. i start crying. is it serious or is he just doing everything STAT b/c we are going out of town, we both begin to get a little anxious. get the x-ray and get home at 4pm and i am feeding ava applesauce and the dr calls. his assistant says, "hey no rush but could you come to the office by 5pm tonight and bring your husband?" not what you want to hear. i start sobbing. but we get ava in her seat and start calling our immediate family and we ask them to pray. get to the dr and he sits us down in his office and tells us that based on his expertise and the other doctors who read my tests they conclude that it is lymphoma. cancer of the lymph nodes. they had found spots in my neck and chest. we surprising keep it together. i think its shock and denial. but we talk for a while. our dr is great. we see the ultrasound and x-ray pictures to get a better understanding. he says this is beyond me now, you guys need to find an oncologist, but i will help you with whatever i can until i can turn you over to a specialist. that was a gift. we set up a CT scan for tuesday at 2pm of my neck and chest. we walked out to the car and said to each other "we will beat this!" still in shock and denial we began calling our families. that was the hardest part. i think monday night it was all so surreal. we laid in bed and kept saying, this is our life...this is actually real. i started noticing back at the day and that night...whenever justin started to cry he would hide behind his sunglasses. although it was hard to see his pain, i knew we were in this together and that we both trusted the Lord with all of it. at this point i am numb.
this began on a saturday, but the symptoms began months ago. i had been having some back pain on the right side of my body since ava was born in january. however, over the past months i thought it was from carrying her infant car seat all over creation. so ignored it. next, i had been having night sweats, again just had a baby and my hormones were/are all over the place. ignored it. sudden weight loss, well i gained 30 lbs and then lost is right after the baby. but returned to my pre-baby weight and thought nothing of it. also i have been breastfeeding until today (that is another post to come, since i love nursing and seriously hate that i have been advised to stop). however, in the past few weeks my legs have been cramping up and feeling numb when i tried to sleep at night. oh, another symptom is fatigue. well i have a 6 month old. enough said. and honestly who is not tired? so ignored that. back to the legs. since they were making it hard for me to sleep i decided i should see a dr. but i do not have just a regular dr only my ob. so a friend recommends someone and after much reluctance and many wise women telling me i needed to go i made an appt. i also went b/c we were planning to leave for upstate NY for the month of august for young life and i wanted to get some pain medication before we left. so i called and made an appt for monday july 26. but they called and changed it to saturday july 24. hindsight best thing ever.
i had an appt at 11 so justin hung with ava and i went to the dr. when i told him the pain i was having he pretty much did an overall physical. while he was touching my neck he felt an enlargement in my neck. he thought it was my thyroid so he was going to refer me to an endocrinologist for monday. i thought fine, thyroid, effects a lot things in your body, sounds good. my dr. told me he would be on vacation next week, but would leave a note for the office to make me an appt and for me to come in on monday for some blood work. this is saturday and i am not worried at all. come home tell justin and we move right along. it was a great family saturday. ran some errands, went to see our future home, which will be on the water, another dream, made dinner together, ate fresh salsa with lime chips. also, if you have not tried lime tortilla chips you must. you know someone loves you when they dig through the bag and find the chip with the most salty lime goodness on it and then say...babe, you can have this one? oh, justin and i call each other babe. pet names usually annoy me, but not babe. its like the word the in our vocabulary. so great day. but at around 7pm my legs start to hurt real bad and we get in bed and watch juno. i am very restless and can not stop moving, justin asks if we should go to the hospital, i say no of course not. so i finally get to sleep and wake up at like midnight and i am drenched in sweat. it was sick. but i change and fall back to sleep ( i took some medicine to help me sleep and i was out of it). get up on sunday and feel fine.