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.