While listening to ‘gospel hour’ on the way to work one of my favorite songs came on…Mountain Get Out of My Way…I included a short video clip at the end of this post from youtube.com of the song.
I smiled, because yesterday found one of my mountains moved. Before I went to work mom gave me a card that was given to her that was given anonymously to someone else (follow that?). Inside was three hundred dollars! That coupled with the one hundred someone else gifted me last week and the money I was able to save from my last check all
the money the doctor wants for my surgery is PAID IN FULL!
Praise the Lord!
Now I just need to, suck it up, go into the hospital and speak to their financial department about how much they are going to want up front for the charges the surgery will incur on their end. I will be turning in my application for their financial assistance program, so we will see…I think what I know to be true is that surgery ain’t cheap…and news flash I am still scared of anesthesia and I HATE with a capital H-A-T-E the idea of having to wear a hospital gown and lay down on one of those hard tables all lifeless…BLAH!
Honestly I’m not worried about it…I don’t know if it is because I am just emotionally too tired to care…or if it is a peace.
*I think it is because I am too tired to care…Seriously, I just want to not have a fever every day, I want to be able to swallow, and breath again…I want to not feel like I have an inflatable neck pillow ever expanding in my neck and I want to stop feeling like I have the flu that never ends.
I am overwhelmed, humbled, and feeling unworthy of the generosity of others…I mean I’ve never been in a position to give someone 100 dollars…or maybe I have an never chose to make that sacrifice? There has been food for thought in this, that is sure. This no insurance thing in contrast with the seriously OUTRAGEOUS cost of procedures (it is up to 3000 dollars and we STILLhave no idea what is going on, the needle biopsies alone were 700 dollars and all they told us was that I have swelling, it is hard not to be a bit bitter about that) make you questions the worth of your life/health…don’t worry I’m not getting into a bad place or anything, I just want to be honest with how it can mess with your head.
On the bottom of a check a friend gave me for 100 dollars the memo line read…‘for God’s provision’…
and he has provided…
I continue to be ‘careless in the care of God’ or at least I try to be!
Still worn down by these things in my neck…although this week has been much better due to the steroids the doctor prescribed…I took the last does yesterday…I did have one very scary episode with not being able to swallow a bite of fish sandwich that left me realizing I need to be A LOT more careful when I am eating especially when I am alone…also I weighed myself after my last post and I have lost 12lbs (without trying) I've not lost that much in a month when I AM trying...I think this has been the scariest symptom (not that I don't like the number I saw, don't get me wrong)...I kind of feel like if I eat a lot and gain the weight back I will be HEALTHY again :)
Tonight I came to work and was told that the state is cutting the agencies budget so they are cutting my shift down from 12 hours to 10 hours a night…That is a loss of 28 hours in a month and approximately 300 dollars a month or 4000 in a year including the times when we would be paid three times in a month (20% of my take home income)…
I had/have no idea how to react…I was quite…then I SOBBED…and now I am in deal with it mode…I don’t know when this new schedule starts…
The only good thing I can see about this is that just yesterday I made 1000 too much a year for the hospital to guarantee assistance with my medical bills…Today I should MOST DEFINITELY qualify…with the threat of what could be wrong with me coupled with no insurance…qualifying for assistance can only be a good thing…can be the ONLY thing…I am not one to say THIS IS GOD, I will praise him in this trial for this ‘blessing’…I don’t know what this is…I am not the only one in the company loosing 20% of their income…families with new babies, children, and lives to support are getting this news as well, and I am sure feel just as punched in the gut as I…
A little over a year ago I was making almost twice as much as I make now and had decent and very affordable health insurance…It has been hard for me the past few weeks not to regret having moved back home…I know I needed to do it (for a lot of reasons…I made more money but I wasn’t managing it well and had gotten in over my head, thus the bankruptcy I went through 8 months ago) I can’t tell you what I would do to be where I am financially (not perfect but more responsible) and back at my old job…It would be perfect (at least in my head)…
I don’t feel like I am a person that has a lot of regrets in life…I like learning how NOT to do things or how NOT to live my life or how NOT to treat people…the richness of who I am and how I think is because of those choices…but right now, I feel sorry for myself...
I feel like I’ve become one of those people I hate that ALWAYS has something going on…job loss, sickness, family trouble, money trouble, life trouble, car trouble, house trouble, money trouble…
I have an idea for a fun post of a few things I’ve found that are OUTRAGEOUS but FUN and something fun to appreciate and dream of…so I promise…for every one sickness, frustrated post I write I will, no matter how short post something positive within the next day to balance it out!
Let me publically remind myself that I need to be “carless in the care of God”…Matthew 6:26…Matthew 6:26…Matthew 6:26…Matthew 6:26…Matthew 6:26…Matthew 6:26…Matthew 6:26…Matthew 6:26…Matthew 6:26…Matthew 6:26…
Today I had my follow up appointment with the ENT…he is recommending an outpatient surgery to remove a lympnode so that it can be tested.
I have NEVER been under anesthesia, and it scares me…A LOT. When I was younger I can remember watching a 20/20 episode about people who had surgery but the anesthesia didn’t take so they were under enough not to be able to move…but not so deep that they didn’t feel pain…could you IMAGINE?…feeling all the pain of surgery but not being able to tell the doctor…
So aside from my fears let me get to the nitty gritty of what the doctor told me…
The CT scan showed numerous masses on both sides of my neck the left side obviously being the more prominent
The Chest X-Ray, was a bit unclear but showed something there that could be swollen lymph nodes
The first needle biopsies were of no consequence…other than to let me know that we are now needing to completely remove a lymph node. This surgery is scheduled for April 13th somewhere in the middle of the day (I think that we will spend a lot of the day waiting)
As a side note he said something about it possibly being cat scratch fever but rules that out because my exposure to our cats is limited. From what I have read cat scratch fever would be treated with antibiotics and I have already been on those twice with no results so it is pretty clear that I do not have that.
So to move beyond cat scratch fever, he feels that the symptoms and the action of the masses point toward lymphoma (cancer) he seemed pretty sure that is what he believes we will find.
because of my age, the most likely the form of lymphoma I could have is called Hodgkin’s. Hodgkin’s accounts for less than 1% of all cancers. The other type of lymphoma is Non-Hodgkin’s which is most prevalent in people in their 60’s. The doctor said that the lymphoma is receptive to treatment and that if successful the masses in my neck would ‘melt’ down.
In regards to the symptoms I’ve been having of…fever…difficulty swallowing…sensitive hearing…heaviness in chest, the doctor seemed to not be concerned…I would ask him to live with the difficulty swallowing and crappy fevers every night and just dismiss it…he did prescribe a steroid to help maybe with the swelling…so I am having high hopes I might get to feel GOOD for at least a week…here’s hoping!
Of course when we got home mom when on the internet to web md to look up Hodgkin's and non-Hodgkin's lymphoma…the symptoms are basically the same, being:
*Painless swelling of one or more lymph nodes, with no recently accompanying infection. (definitely have that one!)
*Symptoms stemming from pressure of swollen lymph nodes on nearby organs or structures. These may include cough and shortness of breath, abdominal pain and swelling, Horner's syndrome (a neurological problem affecting the face and eyes, due to damage to nerves in the neck), nerve pain, and leg swelling. (Yep…that too)
*Fever, either persistent or alternating with periods of normal temperatures. (I have become the low fever queen)
*Pain in lymph nodes after drinking alcohol. (don’t drink so I don’t know)
*Drenching night sweats. (The past couple of months I have been complaining about how I all of a sudden started sweating under the blankets, because I don’t remember having that done before…)
*Unintentional weight loss (more than 10% over six months) (I wish…but by appetite is actually different I don’t snack like at all anymore and like today I simply forgot to eat and by the time our appointment was over at 5:00 I was STARVING.
*Bone pain. (?)
*Increased susceptibility to infections. (always sick so…)
*Total body itching. (?)
So anyway there is what is going on. On April 13th I will have a lymph node removed to be tested for lymphoma then we will go from there. There were a lot of words like CT Scan of the chest (ka ching!) PET scan (ka ching ching!) ect…with the help of the doctor we are doing one thing at a time as it makes sense in needed things for the diagnosis.
As I finish up this post I want to say that I am super tired so am sorry if some of it doesn’t make sense. Secondly I just want to thank everyone who is praying for me and loving me…those feelings of love are translating into peace and strength in my life…I was left feeling today that he pretty much thinks it is cancer…it is going to take a little while to sink in.
Is it fair…
that I am already upset with my doctor and the appointment isn’t even until Wednesday. I just know that I am not going to get the kind of answers I want. If I’m sick then I want to BE SICK, this prolonged state of just feeling like crap is, after almost three months, crushing me.
While I feel he is knowledgeable the last visit lacked any kind of knowing where we go from here…I mean regardless of what is going on I am just supposed to live with a fever every night, difficulty swallowing, crazy sensitive hearing and chest pain? My neck has been tender for the past four days or so (it feels like it is moving up my head and feels really numb like it is asleep or like I got a shot to make it numb).
I’m getting kinda crabby. Thus the purpose of this post.
I’m also really achy tired and get out of breath a lot faster than normal (which has been a bit scary). When I get off work in an hour I plan on letting myself sleep as much as I want without worrying about whether it will keep me up until 4a.m. I’ve been really emotional the past few days. I think part of that is being sad about Sandra.
Then last night I decided to do a little budget and was pleasantly surprised to see that we get paid three times in April…I was NOT so pleasantly surprised that my ENTIRE extra check will be going to pathologists, radiologists, hospitals, kids that live on poplar ave, and the pope. I was in a good place financially. Eight months after bankruptcy and all the lawyer bill is paid off and I could breathe…Now I’m overwhelmed at the thought that the doctor is going to order another biopsy and more tests on Wednesday that I am sure will cost no less than 600 dollars to add to the already 2000. It would have been nice to go to Lane Bryant and get a couple new shirts and a new pair of jeans…All I wear are pajamas and when I do wear real clothes I just feel like I have no choices…I know I’m whining but really was that too much to dream for?
I am turning in my papers to the hospital for aid on Wednesday as well. After two weeks I should know if they accept that I am in need financially, but I have no idea what kind of discount that entails and I know it doesn’t apply to the pathologists, radiologists, and bike riders, that things are contracted out to…
But I know I will be O.K. BECAUSE, of my God…
26 Look at the birds, free and unfettered, not tied down to a job description,careless in the care of God. And you count far more to him than birds. (The Message) matt 6:26
Well, the waiting continues…for a while so sorry I can’t really give much news.
After consulting with the doctor that read my pathology report from the biopsy Dr. Moss is most likely going to recommend another (more invasive) biopsy. The sample wasn’t large enough to get a definitive idea of what might be happening. I only spoke to the nurse and there was not much that she could tell me. I have to wait for my appointment on the 17th to talk to the doctor and get my questions answered. I thought I would be getting a call from the doctor so that I could ask questions and was a bit annoyed at how vague the information was I received.
When I asked about the results of the CT Scan and X-Ray, she just read a bit of technical jargon…of which I understood “Cyst on left thyroid”. I am assuming they are not too concerned or things would be moving a bit quicker.
Emotionally: I’m doing well, if anything waiting just wears you down to where you don’t much care anymore. If no one knowledgeable has a sense of urgency then why should I? eh?
Physically: I feel better than I have in a LONG time. Last week I had a lot more energy. I am still having a hard time swallowing, but thank the Lord it is no longer painful when I eat.
*there is still the random sharp pain on the right side of my chest,
*have an almost constant feeling of wanting to burp air (thank goodness that is pretty much silent cause some of you know how much I HATE burping),
*coughing semi-regularly and
*easy shortness of breath…I sang at church on Sunday and was frustrated at my limitations, and know that I did not do the best I can (but the people at church don’t care so I am trying to see myself through their eyes).
So there’s the scoop…unsatisfying I know!
Transparent Mama said...Just came by to check on you. I had no idea you were going through all this. The waiting is just so hard. You are in my prayers girl! XOXO
Avid blog reader said...The simple thyroid cysts (fluid filled blisters) are usually benign, however if the cyst is complex [has solid components on the walls], it warrants more investigation. The second biopsy will provide the best results if done under direct observance of the ultrasound (the needle will be seen on the monitor while penetrating the nodule).If cyst is large , then it can be drained and/or treated with ethanol scleroterapy.
Best of luck
Yesterday's mail greeted me with these...
Yep, those are the bills for for CT Scan and Chest x-ray. Funny how those made it to me before the results of said tests. Mom says the ease with which I have been billed is because of my lack of insurance. I can see that. As I see it, there are two (possibly three) ways I could react to these gifts in the mail.
#1. I can get upset, overwhelmed, and crawl under the covers in my comfy bed with Little Bit and cry...cry the kind of ugly snot filled cry of a money strapped girl that until last week was comfortable being broke. Cause broke meant making it. Broke meant healthy don't owe nobody don't wanna owe nobody. Now broke means hmm...do I send the doctors (plural), the radiologist, the CT Scan machine this 40 bucks I have right here, or do I chuck it all, stop breaking the law and get my license plate renewed like a good little girl. (I don’t say this to complain, just a fact of life right now.)
#2. Face them, introduce myself, tell them to get comfortable, and make a plan, however small and commit?
#3. My personal favorite...slip the bills into an envelope addressed to me, stamp it, and mail them back to myself once I get some kind of answer from the doctor.
Maybe the hospital bills so much so that you can focus on something other than the fact that you could be really sick. "What? You say you have a tumor growing out of your neck? Your scared and it hurts? No problem just concentrate on the five different places that will bill you between 150-1200 each and all your pain will go away. We appreciate your business."
I am seriously thinking about writing a letter to the editor chronicling what I consider the cruelty of billing for a medical procedure before getting the results. All week I have had people who love me anxious to receive results. I believe their worries and cares are what have allowed me to remain sane and livable in this my week off.
There are a lot of 'letters to the editor' I would like to write. Some serious, some funny, and some just plain petty. Maybe I could start a magazine devoted solely to 'letters to the editor' written by concerned citizens. Everyday heroes willing to speak up for the injustices and sins of the community.
Besides the current medical billing travesty, saving the rainforests, littering, and the unnecessary use of fowl language the biggest concern I would like to write to the editor would be concerning thrift stores. But, that is a post for another time…
Today started with good intentions and ended in complete and utter frustration and disappointment…I realized a lot about myself, not all good, maybe one day I’ll feel like posting about it, but today I just want to acknowledge how completely flawed and incomplete I am…we gotta keep growing or we will die right?
Josh and I will be praying for you. I'm so sorry this is happening. I'm sure Joyce will keep us updated, but just know we will be two of the many people anxiously awaiting your results!
Monday I called the doctors office and was asked to be patient. The doctor wanted some clarification from the pathologist who read my biopsies.
Wednesday…so far (to be fair it is only 11 a.m.) nothing. The nurse who answered the phone on Monday said that the biopsy results confirmed that there is swelling…(you can see from looking at at me that my face is swollen) so the doctor wants a more specific explanation…I’m a bit frustrated, tired of waiting, and scared that when I do hear something it is going to be that they don’t know anything.
I’m trying to be active in this week, to be present and not stuck in the house but I really don’t feel like going anywhere or doing anything.
Monday, I slept from 10:30 a.m. to 10:30 p.m. then went back to bed at 4:00 a.m.
Tuesday, was a good day. I got up around 9:30…cleaned up the house, took a walk with the dog to the post office, and did a lot of crafting.
Wednesday, (today) I got up at 8:30 and have been doing things around the house trying to get up the mental energy to go to Jasper and pick up some things at Walgreens maybe go to a thrift store or two. So far today I have ignored a call from a friend and want to ignore a text from someone…not because I don’t want to talk to THEM specifically, just because I don’t want to talk to anyone…It is 11:30 and I am ready for a little nappy nap…My main goal today is to make it to church tonight.
Anyway the news is there is no news…
heather said...April, I was thinking of you this morning and wondering how things were going. Sometimes the waiting is worse than the knowing. I'll be home this afternoon for a while and need to be home most of the day tomorrow (unless I get called in to sub), so if you feel like stopping by to look at swap stuff, just text or call, and come on over. ( I have some great bird paper for you too, I'll try to remember to bring it with me Sunday if I don't see you before then).
Robynn's Ravings said...Hope all is well dear. Being as old as I am, I can tell you that it usually is but that probably doesn't help right now. Hope you get answers soon and they are all good.
Laurie said...was wondering if you had heard anything...hang in there. your crafty things look very cute btw! :-)
Straight after work Friday I headed to the hospital, for my Chest X-Ray and CT Scan. The appointment went very quickly. In and out in an hour.
Some interesting facts…
Hospital gowns are NOT user friendly. We walked into the dressing room and the nurse handed me a gown. I looked at her and asked “This will fit me right?” and she said absolutely. So I took it went into the dressing room and found that it did not fit. Being me I just walked out (since I was alone) to the cabinet of gowns and picked a bigger size. I was a bit nervous that I would get in trouble.
I had decided earlier that while I could not control this blasted achy mass on my neck, or that it was and is still sore to swallow, that I can not control what the tests results will say, or whether the treatment will be expensive…I could control this day was whether or not I was comfortable, and I was.
They tape a TUM (the antacid) to the ‘mass’ they are scanning so that the radiologist can see exactly where to look.
And, the stuff they inject through the IV for the CT Scan makes you all warm inside…the nurse told me that the warmth sometimes settles in your bladder and can make you feel like you are peeing. I experienced the warmth and am thankful I was educated before being injected.
They said that the tests would be read that day but the doctor would not receive the results until at least Monday.
If I don’t hear anything by today I will call first thing Tuesday morning.
After the tests, I went to see the financial services lady. She was very nice, and just as I suspected I do not qualify for any state insurance help. I kept telling mom that basically if you work you will not qualify for Medicaid but she would not be satisfied until I actually applied. So with that option finally out of the way the financial person gave me some paper work to fill out for their financial program. I am JUST above their cut off for help, but she said there is some leeway and I just have to explain why I don’t have insurance and what my expenses are, for example my having a large expense each month for medication…So we will see what happens. She said that they will work with me on paying and that they do not require a large amount each month to be satisfied so I am at peace.
Last week, I did not do much but work, worry, cry, and sleep. This week has more productive and lofty dreams.
* doing some crafty things to mail out
* taking a walk with my beautiful dog
* doing some much needed filing and paperwork
* using my cell phone to not only text but to actually SPEAK to people
* finding things daily to be thankful for
* capturing a good picture of the beautiful and delightfully chubby cardinal that lives in our front yard (maybe even being crazy and putting up that bird feeder I have wanted to do for a while now.) Oh, and that includes shopping for a bird feeder so that would be fun!
* SLEEP SLEEP and then SLEEP some more
* and blog daily (even if it is just a picture) I like it, and it keeps me somewhat accountable to myself