Avymom's Blog

Today

As I left to my Dr’s office to get my results and get the dumb catheter removed, Little A was in all excitement. This is what he told us this morning, I am quoting.. ”Amma is going to pee-pee doctor, she will lie down on the paper, the doctor will give her mannu (medicine), he will remover her pee-pee bag and put it in the trash, amma will come back home and carry me”. That long sentence made my day!

He also reminded me to ask my doctor if I could carry him. Guess he missed me way more than he could tell.

We left, the whole waiting was hard, but I guess worth it. I got my results. It was a low grade, low stage transitional cell carcinoma. Meaning, it is the best possible outcome. It is a malignant tumor, yet a very superficial one. They have removed it all and I don’t need any follow up chemo. I would need a cystoscopy every three month for two years, then every six months etc.  Chances of recurrence do exist, but then it would be the same stage, grade etc. WHEW!

In short, as of today I feel like I got my life back.

I peed on it (Waiting on that t-shirt from A)

June 16, 2011

Day of the surgery. I had an inexplicable fear of general anesthesia. I mean it is a crippling fear.  There were million other things I could worry about, but I spent a large portions of the nights not being able to sleep because of the general anesthesia, I worry I would not wake up, the fact that I have to be in darkness. Upon further investigation I found my dad has the same fear!! Go figure. Anyway we got there, I was all ready decided I was going to do just a spinal and stay awake, somehow it gave me a feeling I was more in control.  They reeled me in to get my ready to the pre op ward, while A, his sister and P stayed outside.  Little A and my mom stayed home, it was so hard to leave my little one, mixed emotions, overwhelming emotions.  That has to be a separate post Avy and my diagnosis, so much to write. I digress.

I was pre op all ready begging them to bring my husband in, but the nurses kept chatting. Apparently the hospital gowns come equipped with warmers and it was fun playing with that. Then the anesthesiologist came, a lovely woman, older lady and she talked in the nicest way and told me it would be better if I took the GA. I argued, she asked about my fears, and promised me I will wake up 5 minutes after the surgery. I did not agree. Then she had to go away for another surgery and she told me she will be back.  Then as I was waiting and chatting with my sis-in-law and P, a barrage of doctors walked in and started talking. I panicked, as I just wanted A by me, so I literally chased the ladies and asked them to send in the hubbyJ

The doctors explained it all, the whole procedure and the dear lady anesthesiologist gave me all the reassurance I need, promised not to use a gas mask on me and I finally relented, maybe because I was really sleepy by then.  They reeled me in, I couldn’t bear to leave A, yet I was brave, had to be. I went in, the doctors started the IV, the operating room was not quite fancy like they have in Grey’s Anatomy…lol, but had to do I guess.  They started my IV, and she put a mask for oxygen. I freaked out and the last thing I remember is trying to take it out.  I slept. I woke up as I was reeled out of the operating room, she had kept her word, I woke up 5 minutes after the surgery.

The surgery itself was simple. It was non invasive, the procedure is called TURBT (Transuretheral Resection of Bladder Tumor), they insert a tube through the urethera and carve the tumor out. The whole thing is about 30 minutes. When I woke up, my bladder was full of the chemo drug Mitomycin, and it was the worst sensation ever.  I had the sensation to pee, but they had closed it off. I wish I would have woken up 30 minutes later. However I sat through it for 30 minutes, they drained me and moved me to the post op room.  I was ravenous. They fed me up crackers and Gatorade.

Happy reunion with A, sis in law and P. I had the catheter in, but not in much pain. They kept me for another half hour and sent me home. Tough day!

I came home, little A was confused, but he understood that he had to keep his distance from me. He did okay as he had many people to fawn over him. So the wait started, I had to wait a whole week to get my catheter removed and the pathology result back, and it has been a long one.

Week leading up to the moment of truth

I stayed home, sleeping, reading or watching TV. I had to wear the catheter and it is a PAIN. I wore a large bag for nighttime and a smaller bag strapped to my thigh during the day when I can move about. Little A got the most kick out of it. He called it my ‘pee-pee’ bag. This was the week he successfully completed his potty training, so the sweetest little thing he is he offered me a gummy worm when I used big people potty. LOL. As days went by, he got jittery as I could not carry him, he could not sleep next to me, he could not sit on my lap…so he had his ups and downs.

We all tried to maintain the best attitude we could, and yet we knew all depended on the pathology results and that would determine any further treatment.

April 2011

Blood in the urine. I thought it was just the after effect of recurrent urinary infections since March. Yet since I am the person who calls the doctor’s office for everything I made the call. They asked me to come in, took a urine sample, sent it for culture and said the same thing. An UTI and loaded me up with more antibiotics.  Two days after the visit I get a call from my OB’s office asking me to see a urologist ‘just in case’, since I had recurrent microscopic blood in my urine. So the date was fixed May 11,2011. I went about everything else in my life in a normal way.

May 11, 2011

I met Dr. D. Never did I know he would play such a important role in my life. He was uber nice. He took an urine sample, said I had no blood nor infection and that everything has cleared up. He felt that the blood back in April could have been from an unhealed UTI. He felt since I was so young, had no other risk factors he did not want to do any other tests. He words were “if it was my wife now, I wouldn’t do anything further too”. I felt good. He did however mention that if I were to see blood in my urine again (technical term is gross hematuria) I should come back. All was well.

May 16, 2011

Blood in the urine again. Entire urine tainted with blood. My first thought was some kind of kidney issue maybe, kidney stoned etc. No other pain, just mild occasional cramping, which a women often gets in a month so I never gave it much thought. I called Dr. D, just as he told me. He asked me to come in, the only appointment he had was May 18, 2011. I did not think too much about it as the blood stopped by the afternoon. I even debated cancelling the appointment, yet I am not that kind of a personJ. Just love the doctors.:)

May 18, 2011

I went in, he took an urine sample, again no blood. He however said he needed to do a cystoscopy.  I had no idea what it was, I was under the impression he was going to do a ultrasound or something to look at the kidneys. It was not a pleasant experience. If you google cystoscopy you can know all about it. I was lying with thoughts racing through my head, not knowing what to expect, and I hear him say “Oh, I see it”.  He then removed the equipment from me and said “You young lady have bladder cancer”. My mind just went blank, eyes started to well up.

I then vaguely remember him asking me if I want to see it, and I said Yes. He hooked up a monitor on which I could see and showed it to me. That was the first time I saw IT. It was like a sea creature,  like sea algae and it looked HUGE. I had no clue what to think. I was lying on the doctors table with tears flowing like a water fall.

Dr. D then said, get dressed, call your husband, I will talk to him. I remember getting dressed, calling A, trying to get words out through all the choking and tears, I could hear him tear up. I then handed the phone over to Dr. D. He told A the same things he told me.  I am quoting Dr. D. “I have your beautiful wife sitting in front of me and I just told her she has bladder cancer. How do I know without a biopsy, I know because it looks like a textbook tumor. But I do not want you to worry. I am going to go in and remove it, and then she would need check ups. She is going to live a long life with you and you guys are going to have a lot more children”.

I left…life changed.

I went to my office, cried in my partner’s office. I left work and headed home. I saw A and cried even more. We gathered ourselves and went to Little A’s school to pick him up. Evening progressed, it was all a haze. When the little one is around there is not much time for sulking, we made dinner, gave him a bath and it was nighttime.  After we put Little A to bed, we both broke down. In a way it was good, your head gets clear. We hit the sack, preparing for the rest of our lives, as it has just changed in a way that we could never imagine.

The next few days consisted of telling the family. It was hard. Tempers flew, how can the doctor just tell me, why did he not do a biopsy, maybe we need a second opinion. All thoughts originated from a place of deep caring, yet it made the days harder, as we all needed answers, and we all had none. My mom had just left to India two weeks prior and she made plans to return.  We have lot of known doctors in the family, calls flew left right and center. More thoughts, more confusions.  I stayed away from google, which was very hard for me, but I thought it was pointless unless I knew that I was dealing it.

It was hard to keep my head in the game. The next stage was a CT scan to determine if the cancer had spread. That was on May 24, 2011. The days between the 18^th and the 24^th, were some of the worst days of my life.

May 24, 2011

Day of the CT scan. I was all nerves. Our dearest family friend, P (she is a physician) had come with her two year old daughter T, to help us through the appointments.  She arrived the previous day night. The day of the scan, we sent Little A to the daycare, and the rest of us headed to the hospital. The scan was done, yet the report would not be ready till the next day. So one more day of torturous wait. Talks about the location of it being an issue were discussed with various doctors. All the possible worst case scenarios ran though my head.  I had to wait till 4PM the next day to meet the doctor and know the situation.

May 25, 2011

We ALL went to the doctor’s office. It looked more like a picnic. A, Little A, P, Little T and myself.  We all barged into his office, Dr. D looked a little shaken up, but he adjusted saying he has three kids himself. He then explained the CT looked good, nothing has spread, kidneys look fine. I realized I could breathe finally.  The kids were little monsters, they kept asking  for cookie and candy and knew we would keep supplying them, so as to keep them quiet when the doctor was talking.  We were played big time.  The date of the surgery was fixed too, June 16, 2011. Thoughts on whether it was too far away was there, but nevertheless we had received good news. IT HAD NOT SPREAD. We all headed home happy. We took the kids swimming, and it was the first happy moment in a while.

Three weeks went by as slowly as they could, we made a trip to P’s place just to take our mind off, I finished up as much as I could at work, not knowing really how soon I could return, as it all depended on the pathology report and if further treatment was warranted. So all was done, A’s sister was making a trip to help out during surgery, P came back and we all got ready…

The first step on a long road ahead!

I know I am on a hiatus and all, but these two conversations yesterday, one that weighs down heavily and one that lightens the heart show how much a two year old’s words can change your mood…one conversation was with me and one with his Lovely Paati…

So here is the first one…

As I was eating dinner last night, he came running like he always does and climbed up in the chair next to me..

Avy: Amma what are you eating?

Me: I am eating yogurt and oorugai (pickle)

Avy: Can I eat pickle?

Me: No, because it is hot, and you can eat it when you become a big boy.

Avy: Can I eat yogurt when I am big boy?

Me: Yeah, I think so

Avy: Will it still be yummy then?

All I could do was hug the child….when he talks like this it makes me wonder what kind of impressions he forms on those food that he can’t have and in his little head and beleives that everything will be okay when he grows up and I sure hope it does…..

So much for a heavy heart and let’s make it light now. My mom came back form India to help us during this whole health crisis I am dealing with. That means Avy stays home two days a week from Daycare. Now normally he and my mom fight and he asks her to go back to Chicago, not India, but Chicago to her other peran, but always qualifies it by saying “You can go after amma and appa come back from office”. So the following conversation was refreshing…LOL

Avy: Paati, don’t go back to India

Paati: Yen da kanna (Why sweetheart?)? I will go in a little while, but you have appa and amma.

Avy: Who will give me lollipop if you go to India? (Should mention that he was eating a lollipop, which was his dessert after lunch)

Paati: Amma and Appa wil give you lollipop. They will give you everything you want.

Avy: They will give me everything Paati, but not Lollipop!!!!!!!!!!!!!!!!!!!

Oh the grandparents!!!!

Not sure why I often come here and post hiatus notices, maybe it is because I want to write but life keeps taking various unexpected turns and I am not able to keep it all up.

So now life has thrown yet another challenge and curve ball for me and the next month will be spent dealing with it. As I always said if you have your health you have it all. Right now, my health is shot and I need to step back and fix it all.

I will be back with the story, the information that I want to share with everyone…keep watching….