Tuesday, December 15, 2009

Where in the World is Jacquelynne Steves??

Many some two of you may be wondering where I have been. It has been a heckuva couple of weeks (and not in a good way.) I have been going through a really difficult time. I thought about blogging it- but frankly, it has been hard enough to just live it, I just didn't feel like sitting down and writing it and rehashing it. I know for some people, writing is therapeutic, but for me in this case, I have spent most of my time trying not to think about it. Also, my kids read my blog and I didn't want to freak them out.

I apologize that this is a very long post, and I hope it is not too graphic. I have spent a long time considering how much I should divulge.  But it has been the major part of my life lately, and it feels dishonest to blog about Christmas decorations when, right now, they are the furthest thing from my mind. I am usually a very private person, but God and the prayers of many wonderful and faithful friends have, and continue, to lead me through this.

A couple of months ago at my regular gyn appointment, I mentioned to the doctor that I felt bloated and crampy etc. so she gave me a prescription for an ultrasound. I put it off for 2 1/2 months because I figured it would just turn out to be something like fibroids or something, and hey, I was busy, you know? So I finally got around to going for the ultrasound in mid-November. After calling a couple of times for the results, I finally heard back from them 6 days later (after I left a message demanding that they call me) and they tell me I have a mass on my bladder and recommend a CT scan. So I called for that appointment, and had to wait another 6 days. Which made for an anxious Thanksgiving week for me. And that's when things got worse.

Monday November 30.  Drink disgusting barium and go for CT of pelvis and abdomen. Ask the doctor's office to call me right away with the results, since I have now been waiting around for a week wondering if this "mass" is something to be worried about. Of course, my mind wanders to the darkest scenarios possible.

Tuesday December 1. Receive word from gyn in morning that there is definitely a mass, she recommends I get to a urologist ASAP. And by the way, I also have a couple of kidney stones, a slightly enlarged uterus, and fluid on one of my ovaries. She recommends (under her breath, so that others in the office can't hear her) that I don't go to a local hospital and instead go to a large city hospital, and tells me to let them know if there is anything at all they can do for me..... I make some calls. Get a recommendation for a urologist from a lady in our church who is currently undergoing bladder cancer treatment. Call the urologist and get appointment for the next day. They want me to bring the CT scan films, so I arrange to pick them up at the radiologist.

Wednesday December 2. Pick up the films and written report from the radiologist. Get in my car and read the report. Mass on bladder.... lesion on kidney..... something else "uncharacterized" in my liver and the base of my lungs. I hyperventilate, freak out, feel like I am going to throw up. This is the end of me, I have just found out how I am going to die. Start to drive home. Decide to stop at church because I don't want to go home and be by myself. A couple of ladies at church pray and talk me through my breakdown.
I go home, hubby comes home from work to go to doctor appointment with me. I let him eat his lunch, and then tell him that the report looks really bad and start to confess my fears. He assures me that yes I will see my daughters get married and see my grandchildren and live a long life. He is a rock, I am falling apart.
See the urologist. He looks at my bladder with something called a cystoscope- not a pleasant experience. The tumor is not in my bladder, but behind it, possibly on my uterus, pushing in on the bladder. He gives me a script for a STAT MRI and sends me home with an antibiotic to prevent an infection from the test he performed. For the next 18 hours, peeing is torture. He tells me to see my gyn for the CT report, because he thinks this is a gynecological issue.

Thursday December 4. Go for MRI. One of the techs makes an innocent inquiry regarding what they have found on my CT scan. I spend the next hour in the MRI tube (aka "coffin") with nothing else to do but think about my impending doom.
I have tried to get through the week and do what I need to do- Christmas shopping, help build the Christmas Village at church, go to choir practice, etc. In the evenings at church, people comment that they haven't seen me wear glasses before. I don't tell them that I can't wear my contacts because I have spent the week crying. I deal with being really angry with myself for waiting 2 1/2 months to get the ultrasound. If this ends up really bad, it's my fault....

Friday December 5. Hubby goes with me to gyn appointment to get the MRI report. I am full of anxiety. I have not been to this office before, and I find it odd that there is a young guy about 22 years old working the desk. I have never been to a gyn office where the office staff was male, unless the male was the doctor. Also, I find it disconcerting that apparently it is "casual Friday" and this guy is wearing baggy jeans, a Phillies sweatshirt, and a Phillies baseball cap. This does not set my mind at ease. He looks like he is going to a baseball game, and he's working in my doctor's office. Seems unprofessional and does not put me at ease. Finally go in to see the doctor. There are 2 MRI reports- 1 abdomen, 1 for pelvis. The pelvic MRI does show a mass on my bladder, but the abdominal one is OK- no mention of anything on my kidney, liver, pancreas..... She sends me back to the urologist. I break into tears. She thinks that it is because I still don't have an answer about what this thing is- but I explain to her that I am so relieved that apparently, my body is not full of cancer. I come home and call the urologist's office and get an appointment for Tuesday. Later I tell my husband and a couple of friends that I have never been so relieved to find out that I might "just" have bladder cancer.

Monday December 7. I have an appointment with my primary physician for a routine physical, which I had scheduled a couple of months previously. I keep the appointment and hope he can give me some answers. He is sure that this cannot be biopsied in the urologist's office, so he gets the ball rolling with my pre-op testing so that whenever they can take me, I will be ready to go. I leave his office and go for bloodwork (which I can do since I have not eaten all day- I have not been able to eat for at least a week....) and then I go for a STAT CT of my chest, just to make sure that whatever it was in my lungs that they saw on the first CT scan is not something to worry about. He reassures me several times that he is over-reacting, but it is disconcerting to say the least to be handed a script that says- STAT CT of chest, rule out metastases, bladder tumor. I call the radiologist from my car, at first they want me to wait till Wednesday, but I tell them it is a stat order so they squeeze me in that afternoon.

Tuesday December 8. Appointment with urologist. He will schedule me for same day surgery at the hospital on Monday for the biopsy. I ask if I really have to wait that long, he replies that he does surgery on Mondays, unless it's an emergency, and this is not an emergency (well, maybe not to him.....) He says I may come home with a catheter.... I really hope not.

Wednesday December 9. Back to primary physician to get a note for medical clearance for surgery, get EKG done. Come home. 2 hours later, I break out into a horrendous rash that is red and angry looking and itchy.  Are you kidding me? I've already been to my primary physician's office twice this week. My husband thinks it looks like a drug reaction. I find this odd, because I have just taken the 13th of 14 doses of the antibiotic I received last week. You would think I'd react when I first begin to take it. Go to bed hoping it will be better when I wake up.

Thursday December 10. Rash is worse. Go back to primary physician. What do you know? It is a drug reaction- I am now allergic to sulfa. Get prescription for steroids to help calm my system down before surgery on Monday. In the afternoon, I go to my pre-op appointment at the hospital. Fill out the forms etc. They will call me between 2 and 5 pm on Friday to let me know what time to report to the hospital on Monday.

Friday December 11. The first day in a long time that I have not had a doctor's appointment or test. I get the call to arrive at the hospital at 11:30 am on Monday. No food or water after midnight Sunday.

Monday December 13. Arrive at the hospital. Terribly dehydrated and feeling icky. They have trouble finding my veins for the IV. I am scheduled to go in at 12:45, but they don't take me in until 3. I am weepy. They give me something to calm me down, but I am still weepy. The last thing I remember as I go to sleep is a very kind nurse, caressing the tears from my cheek and telling me it's going to be OK. She is an angel. When I wake up, the first thing I feel is a catheter. Crap. I was really hoping to avoid that. Also, my throat is killing me, so I guess they intubated me, though no one mentions that. Nurse helps me to get dressed. The doctor has also given hubby a picture of my bladder to bring home (I will spare you and not post it here!) Hubby picks me up at the door and drives me home. I spend the next 4 hours on the couch, watching Penelope and Little Shop of Horrors on DVD. Younger daughter comes home from her grandmother's and kindly fetches anything I need. When it is bedtime, hubby helps me walk to the kitchen for a glass of water so I can take my antibiotic (not sulfa....) After a few minutes, I start to feel really dizzy. My face is hot and there is ringing in my ears. I sit on the kitchen floor, and after a couple of minutes I don't feel better and wonder if we should call the doctor. I then lay down on the kitchen floor. A few minutes on the cool kitchen floor makes me feel better. Hubby helps me up to bed. He has to help me out of my clothes and into my pajamas, and drains my catheter bag for me. He is a saint. It is hard to get comfortable in bed. It is hard to sleep.

Tuesday December 15. I wake up feeling a little better. Still weak from not eating and a little dizzy. But hubby has taken another day off from work, helps me shower and dress and get downstairs, and makes me something to eat. Have I mentioned that he is a saint?
The biopsy will take 5-7 days to come back, so now I just wait....

This has been the longest few weeks of my life. I am ever grateful for the prayers and wonderful support I have received from so many. God has taught me a lot through this, and I would like to share some of that a little later. If you have spent the time to read through this whole post- thanks for your patience.

The Lord your God is with you, He is mighty to save.
He will take great delight in you,
He will quiet you with His love,
And rejoice over you with singing.
Zephaniah 3:17


  1. I know all this yet I read the whole thing anyways :)

    You are a wonderful writer and we have a craft book to put out! So enough of this hogwash mass on the bladder garbage. Be healed in Jesus name Jacquelynne Steves !!!!!

    Love you~♥

  2. I am so sorry you have had to go through all this...I am glad you had a wonderful nurse, I am one too. Many prayers and thoughts are with you, including mine. All peace and comfort be yours, dear lady!

  3. I did read the whole post...and will be keeping you in prayer...I think not knowing is the very worst of all and will pray that this time goes by as quickly as possible for you, and that all will be benign and easily removed!
    Hugs and blessings,

  4. . . . Know that I am praying for you. . . & am looking forward to the time when you will get some answers. It can be so hard - but the arms we are leaning on are 'everlasting' - so my prayer is also that you will be covered by a blanket of peace - knowing that God is in control of all of this.
    Love you. . . xo, Bren

  5. Jacquelynne,
    Covering you in prayer my friend....may the Lord give you sweet peace and comfort!!

  6. Thank you for your openness with us. Now we know how to pray for you. May you be comforted by His words: "Find rest, O my soul, in God alone; my hope comes from Him. He alone is my rock and my salvation; He is my fortress, I will not be shaken. My salvation and my honor depend on God; He is my mighty rock, my refuge. Trust in Him at all times, O people; pour out your hearts to Him, for God is our refuge...one thing God has spoken, two things have I heard: that you, O God, are strong, and that you, O Lord, are loving." Ps. 62:5-8,11&12

  7. I am in tears reading your post. I didn't go through all the trauma you are, but I did have to have surgery a year ago and can really relate to how you felt after you came home. Sometimes the cool floor is so wonderful. I will say a prayer for you that everything will be all right...or at least easy to fix.

  8. You and your family will be in my thoughts and prayers. Hugs

  9. I am new to your blog. I wish you well and pray for your complete recovery.
    I am anxious to hear the results.
    God Be With You

  10. Where in the world in Jacquelene? She is where her Lord plans her to be and He is right there with you.
    Take comfort in knowing that you are in my prayers and I uplift you and hubby in prayer for healing, strength and peace. Amen!

  11. Oh my dear sweet lady!
    Praying for the best results.

    It is good to see how your family is loving you through these trials.
    Remember that we women always think worst case...that makes anything else seem very doable!


    Becky K.

  12. Stay strong. You are in my thoughts and prayers.

  13. Jacquelynne, keeping you in my prayers that everything comes back okay for you!!

  14. Dear Jacqueline,
    i will keep you uplifted in prayer-what a difficult time this has been for you. Don't feel guilty about posting your trials- it gives others hope- hope in prayer and assurance that God is truly good. We all have needs and should never be afraid to ask for help- altho that is difficult for most of us.
    I am a gynecology nurse and it is interesting to hear the patient's perspective. We all need to be mindful to be kind gracious and professional because you need to trust the people caring for you. Blessings- Lona

  15. Good morning, new blogging friend. I wanted to send a bit of encouragement to you today, after reading this blog post.. I know it must be incredibly difficult to sit and wait, and not know. But the thing is, HE already knows, and is in complete control - even if the stupid bladder is not in control.. Heres a poem I penned some months ago, when I was recuperating from open heart surgery, and I needed to bless myself with comfort ( felt totally alone, so why not bless myself with His peace? ).. I hope you draw strength from these words of my heart..
    when you cannot close your eyes
    and you think you can't keep going on
    the peace of God comes surrounding you
    and fills your heart with His healing song

    You will find peace in this valley
    you will find such loving care
    you will find hope for all your troubles
    you will find my God is waiting there

    when you cant seem to see ahead
    what I can clearly see for you
    just rest in My arms of love
    as I have my work set out to do

    For you :
    you will find my peace in this valley
    you will find my Presence waiting there
    you will find hope for all your days
    I am a God whose love for you, I will share.

    Nestle into my comfort, Child
    feel my gaze upon your face
    be still and know I will hold you close
    come to my Side, a healing place.

  16. OMG...I am so sorry you are having to go through all this. You will be in my prayers and I'm glad you wrote about it all.

    Big hugz,



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