Tuesday, January 26, 2010

How long the after effects last.

Today is January 26,2010, as of today I can't tell you how long they are going to last because they are still happening. I got my appetite back to where I can eat just about anything I want as long as I don't over do it. I try to eat healthier a lot of fruits and vegetables and I drink more milk and real juices when I can. I cook with extra virgin olive oil now instead of butter and margarine or any kind of oils, it really is better for your digestive system. I have learned how to control my bowels to a certain extinct, after I eat any meal, with 15 to 20 minutes I have to go to the bath room. Depending on what and how much I ate, determines how intense it's going to be(whether I make it to the bathroom before it's to late)I never really know until it happens. The muscles that I use to be able to control do their own thing. I don't go out to eat as often as I would like because I don't want to be embarrassed and don't want to embarrass anyone. My Lymphodema is about the same, some days I am stiffer than others, and weight gain does have a lot to do with how you are going to feel. I try to wear support hose more than I wear body suits, sometimes they (body suits) are to tight and very uncomfortable, especially if I have them on over 3 to 4 hours. All in all I am grateful and I thank God that my condition is as it is, because it could always be worst.

Saturday, June 6, 2009

After effects of Radiation and Chemotherapy/Cervical Cancer

The morning I went in to have the Smit Sleeve removed I was nervous, because I was told I was going to be fully wake when it was taken out. I couldn't understand how this was going to be a painless procedure, since I had to be put to sleep to have it put in, didn't make any sense to me. I was no longer my original GYN's patient, I had been assigned an older doctor, when I seen him I really got nervous because he was real old, he asked me a few questions and explained how he was going to remove the Smit sleeve and by the time he finished explaining what he was going to do, I was as nervous anymore, I could tell he knew his job well. He told the truth it really didn't hurt, when he was finished it showed it to me, it was a round disc I guess about an inch wide, with a hold in the middle about 3/4, and little holes aroung it so it could sewn in. He told me to get dressed and he would be back to talk to me. As soon as I stood up, I heard something plop to the floor, I looked down and there was something that looked like thin jell-o, and it really stank. When the doctor came back in I told him what had happened (I had cleaned it up by then) he told me that was what usually happened and for a while I was going to have this discharge (that's what he called it) but he forgot to tell me about the pain I would have I guess about 15 to 20 minutes after it came out, it felt like really bad cramps. I found out that the amount of this discharge determined the amount of pain and how long it was going to last, but the smell got to be less and less, so much came out when I felt it coming, if I was laying down I immediately jumped up so I wouldn't mess up my bed, I kept paper handy to put on the floor so I wouldn't ruin the carpet, I would have to just stand there until it stopped oozing out, if I hadn't taken a pain pill earlier I did then to ease the pain. A couple of times I threw my pajama bottoms out, there was no need trying to save them, the smell was something you wanted to get rid of as soon as possible. That condition lasted about 3 weeks and went away and that was in August of 2008.

Friday, June 5, 2009

After effects of Radiation from Smit Sleeve/Cervical Cancer

Out of curiosity I look up the description of a Smit Sleeve and the first thing I read was a young doctor looking for information. Well I had one inserted thru a short procedure operation, (they sewed it in place in my vagina. The doctor told me I wouldn't know it was there, and he was right, but he didn't tell me how painful it was going to be when he attached the other part to it to shoot radiation bullets into my cervix, I really can't tell you what it looked like all I know, is after the part was attached I had to lay on my back for at least 2 hours if not more, waiting for some kind of report to come back, and you had to be catherized also, I felt like I was being held open down there as wide as they could possibility get it, one of the most uncomfortable things I have ever experienced and I pray I will never have to go through that again. The next thing that happen was, the stuck another tube, we'll call it a gun, to shoot the bullets thru the smit sleeve to the cancerous area, I don't know how the bullets came out, or if the melted or what, all I know is that I was glad when it was over, and that I only had to have go through that pain for 4 days straight. About 2 weeks after my last treatment the Smit sleeve became very painful (I was shrinking on the inside from the first radiation reatments). It wasn't taken out after my last visit because that day my GYN wasn't available to remove it. Anyway, I can't remember exactly how long it took me to finally get it out, and what I went thru after that is another story for another day.

Tuesday, June 2, 2009

The after effects of Radiaion and Chemotherapy treatments for Stage 3 to 4 Cervical Cancer

It took me a long time to put this experience on a blog, because I am a very private person, but if my writing my experience will help other women who are going thru or will go thru the same thing, at least they will know what to expect. (I didn't, I found out first hand)

I,m going to start this blog by telling you my story from the beginning. I am presently 59 years old, and I was diagnosed with Cervical Cancer in Febuary 2008, after a series of test for every kind of VD, STD, AIDS, Yeast, Kidney and Bladder infections, every kind of test imaginable for women, every one came back negative. I knew that was impossible because, I had the cramps like you do when your period is on and the most unusually strange smelling bad odor from a pinkish discharge that started slowly and lasted only a couple of days at first. When I think back on when the symptoms started it took a couple of years for the condition to get to where it was constant enough for me to realize something was definitely wrong. Anyway, after all those test came back negative, my doctor prescribed Flagyl (an antibiotic that was good for many vaginal infections). After I finished the prescribed dose (for 10 days) I thought everything was alright, the cramps, odor and discharge were gone, but within, I'll say a week the symptoms were back again, stronger than ever. At that time my doctor recommended me to see a GYN, (now adays your Primary doctor only does office stuff) so she set me up with a GYN at a hospital she knew, and he arranged for me to have extensive test done to determine my condition.
I am not going to explain all of the these procedures in my words, only the ones I don't have in writing from my doctors. I will make the reports from the doctors bold, also I want you to know my story is true.
The first thing I had done was a regular vaginal examination and a couple of different kinds of pap-smears to eliminate and identify what was causing my symptoms. After these test came back that was when I was told I might have a form of vaginal cancer, but I had to have 2 exploratory biopsies done one to look at my cervix and the other to look at my colon, ( I had a partial colostomy where a third of my intestines was removed in 1993, I wasn't told by that doctor whether they were cancerous or not only that I had over a dozen palops connected to my intestines when caused me to develope hemorrhoids and sometimes bleeding.) that's why they needed to look at my colon also.

After my initial examinations were done on March 2,2008 this is what my GYN reported:

CT BODY W/O & W/CONTRAST INDICATION: 58 year old female with abdominal and pelvic pain. CT of the abdomen and pelvis was performed and following the intravenous administration of 125 cc of Optiray 320 and oral contrast. Correlation is made with ultrasound of the pelvis dated 2-5-08. There is dependent atelectasis at the lung bases. The visualized portion of the heart is normal in size and free of pericardial effusion. CT ABDOMEN: There is a small hypodensity in the right lobe of the liver that is small to characterize. The liver and spleen are otherwise normal in size and homogeneous in attenuation. The gallbladder is unremarkable. The pancreas is normal in appearance. The adrenal glands are unremarkable bilaterally. The kidneys enhance normally and symmetrically. There is no hydronephrosis. There is a fluid-filled loop of small bowel that runs in the region of the left adnexa. The appendix is normal. There is no free fluid or free air within the abdomen. There is minimal atherosclerotic calcification of the abdominal aorta. CT PELVIS The bladder is decompressed. There is an increased amount of fluid in the endometrial cavity since the prior ultrasound. There is also fullness in the region of the cervix which appears slightly hypodense. The left fallopian tube is mildly dilated containing fluid measuring 1.5 cm in diameter. There is a hypodensity in the right ovary which may represent a cyst. There is a 4.1 x 3.6 x 4.8 cm soft tissue density adjacent to the iliac vessels and left adnexa that mostly represents an enlarged iliac chain lymph node or the left ovary containing a complex cyst. There is prominent paraaortic, aortocaval and bilateral iliac chain adenopathy. There is also a small right linguinal lymph node. Evaluation of bone window demonstrates degenerative changes of the spine. IMPRESSION: Pelvic adenopathy as described which is concerning for malignancy. Given the fullness of the cervix and its hypeervascularity on the prior ultrasound, a cervical neoplasm should be considered. The films and dictation have been reviewed with the Resident and I agree with the findings. I hope someone reads this today, this is only the beginning, I'll continue later.

After my Pre-op procedure on 3/31/08, this was my REPORT OF OPERATION:

Cervical mass, carcinoma in situ cervix. POSTOPERATIVE DIAGNOSIS: Cervical mass, carcinoma in situ cervix, invasive cervical cancer PROCEDURE: Exam under anesthesia and IV fluids 800 ml of cystalloid, cystoscopy, proctoscopy, cervical biopsy, vaginal biopsy. INTRAOPERATIVE CONSULT by my Oncologist (I'm not using any doctors names) SPECIMENS: Cervical biopsies x3 and anterior vaginal wall biopsy x1. FINDINGS: Large tumor extending 1/3 all the way down the anterior vaginal wall. It was not fixed to the vaginal sidewall, but it did go up to the vaginal sidewall on rectovaginal examination..The rectal mucaso was normal. The cystoscopy was also normal without bulbous edema, nor was there any tumor extension. The tumor certainly was greater than 3 cm in its size. The clinical stage was clinical Stage 3a. PROCEDURE IN DETAIL: The patient was dentified, after informed consent had been obrained general anestesia via anestsiologist was placed without incident. The patient then placed in padded candy cane stirrups. The patients position was verified for patient's safety. The patient prepped and draped in the usual sterile fashion. A timeout procedure was completed for patient verification. A Dever was placed in the posterior and anterior wall of the vagina and vaginal cervical biopsy bare taken as noted. Hemodtasis was noted. Cystoscopy then placed with the aforementioned findings. Proctoscopy was then placed with the aforementioned findings and exam under anestesia completed by Oncologist and 2 other GYN doctors was then completed for clinical staging. Hemostasis was noted at all the sites. The patient tolerated the procedure well and was taken to the recovery room in stable condition after instrument and sponge counts correct x2. MICRO RESULT TEXT: SURGICAL PATHOLOGY REPORT Diagnosis: A. CERVICAL "MASS", BIOPSY : -DETACHED FRAGMENTS OF SEVERE SQUAMOUS DYSPLASIA/IN-SITU SQUAMOUS CELL CARCINOMA. CANNOT RULE OUT STROMAL INVASION B. ANTERIOR VAGINAL WALL, BIOPSY: NO TUMOR SEEN. TISSUE CODE 1. Clinical Diagnosis/History: PRE AND POET-OP DIAGNOSIS: Cervical mass. TYPE OF PROCEDURE: Hystero, colposcopy, cervical biopsy. Macroscopic Description: The specimen is labeled in two parts. Part A. The specimen is labeled "CERVICAL BIOPSY" and consists of four irregular pieces of pink-tan rubbery soft tissue measuring 1.3 x 1.3 x 0.5 cm in aggregate. Entirely submitted in A1. Part B. The specimen is labeled "ANTERIOR VAGINAL WALL" AND RECEIVED UNFIXED. It consists of a single piece of pink-tan soft tissue measuring 0.5 x 0.2 x 0.2 cm. Entirely submitted in B1. Again, I wrote the actual doctors report so you will know they are true, and if you are like me you want all the medical records you can get. (you can compare your information with mines)

When I started my treatments I worked for a bank on the twilight shift, part-time 30 to 34 hours a week, starting between 9:30 and 9:45 nightly until 5:45 in the morning, 4 nights a week Monday, Wednesday, Thursday and Friday. I hadn't been on this job a year and had only started my insurance in October of 2007, when I was diagnosed with Cervical Cancer, so you can imagine what happen to my benefits, it paid for procedures before my treatment started, after that, it didn't pay for anything else, luckily I qualified for Medical Assistance, it took a couple of months for it to take effect, I still get bills from the hospital asking for money they know I don't have. I know they know I don't have the money to pay them because I need to have a Smit Sleeve inserted into my vagina to have my last four radiations treatments and the hospital paid for that surgery because the doctors who preformed the procedure knew I had no insurance at the time, so they arranged for it to be done. My largest bill was over $150.000.00, can you imagine receiving a hospital bill in the mail for this amount not knowing that your Medical Assistance hadn't been approved yet. I was actually to sick to have a heart attack. Anyway I'm getting ahead of myself.
On April 28,2008 I began Radiation treatments. I received 16 shots of radiation 5 days a week, Monday thru Friday, somewhere between 7:00 and 7:30 in the morning, for the first 4 weeks of treatment I received Chemotherapy treatments on Thursdays. For the 1st month of treatments I got weaker and weaker after each treatment, after my second chemo treatment I started getting deathly sick about 2 to 3 hours after I got home. At first I only threw up in the day time, then I started throwing up anytime. I caught public transportation to work, their were times I had to get off the bus to throw up, I'm sure people throught I was pregnant, (if they only knew). After my 4th chemo treatment, it was actually 5 or 6 days later when I finally started feeling like I was going to live through this 4th chemo treatment, I slept a lot, couldn't hold anything on my stomach, not even water, food was out of the question, nothing had any kind of taste to it I was so out of it, I didn't know what day it was for 3 or 4 days and didn't care, all I wanted was for my boby and mind to come back to feeling normal, right now today, I still don't feel like I did before the treatments and it's almost a year since my last radiation treatment, I couldn't work, I went from 4 days a week to 2, and finally I only worked one day in July. I was so weak I couldn't lift my legs to get on the bus any more. I didn't realize then I was developing Lymphedema. Then along with me feeling like I was living in a Twilight Zone movie, I lost control of my bowels,( if any body had of told me 3 months earlier that I would be wearing adult diapers, I would have told them they did't know what they were talking about) when I ate anything it ran right through me. I was like this for about a month so I dependended on my Depends. I didn't eat because I was hungry, I ate mostly for my Mother, she was watching me lose probably a pound a day, ( when I began my treatments I weight 187 lbs, when I finished I weight 140 lbs), nothing tasted good, I mean nothing, and I couldn't eat with metal utensils, that made the food taste worst and left a metallic taste in my mouth, so I had to eat with plastic utensils. For weeks all I could eat was chicken noodle soup, oatmeal, cream potatoes and chocolate milk shakes, those were the only foods that had any taste to them at all. I couldn't eat any meat products of any kind, meat no longer felt right in my mouth and did not taste like I knew it should. Then I went from constant diarrhea to constipation, it would be 2 or 3 days and I couldn't go to the bathroom. I thought I couldn't go because my stool was too hard to come out, thats was how my stomach felt, nothing was moving,so finally I took a laxative, it only took about 15 or 20 minutes for it to work and was I surprised, it wasn't hard at at it was like jelly, what I didn't know was that now my intestines had stopped doing what they normally did, they no longer moved my food on, and by me not eating as much as I use to, my food just sat in my intestines until I ate enough for the food to push itself out, it's still like that I have learned how to control it. At first I couldn't, because I didn't really understand what had happened and was still happening to my insides (they were shrinking). When I had to pee it took me so long, at the end it hurt really bad, so I thought I was developing some kind of urinary infection, I didn't realize my urinary tract and my bladder had shrunk along with my intestines, can you imagine your stool coming out of you the size of a pencil, now it's up to the size of a lipstick tube, and I have to take a stool softner about twice a week so I want get constipated. During this time I started having pains in my back and my arthiritis pains came back, regular Tylenols worked maybe 15 minutes, so I hurt a lot, then one day I was cleaning out from under my bed and found a bottle of Tylenol with Codine my chemo doctor had given me during one of my earlier visits with him before my treatment started, he had given me the prescription for the meds because I was in pain from the cancer at the time, I had really forgotten all about the pills until I saw them. When you take chemotherapy it does something to your brain, doctors call it chemo brain, you can't remember things, you don't see things right, for instance, reading was hard for me, couldn't understand things I read, I didn't see words as they were or I didn't see them at all , so I stopped reading, I couldn't read my Bible like I was use to doing, because I no longer understood most of what I was reading, I thought I was losing my mind at first until I told my chemo doctor what was happening and she explained the chemo brain to me, it made me see words backwards or sometimes I saw a different word altogether. I was initially was scheduled to have 6 chemo treatments, but after the 4th one I was afraid to take the 5th one, so I explained what happened to me to my doctor, and luckily I really didn't need more chemo, I don't think I would have come out of the 5th treatment in my right mind, I felt like I almost lost it after the 4th chemo treatment, I really don't remember a couple days from some of the things my mother told me she said to me and how she said she watched me, sometimes she said I didn't look like I was breathing and she had to call me a few times to wake me up and I remember her touching my face to wake me up a few times, I really scared her the way I was looking and acting, when I finally started feeeling better I looked strange to myself so I could imagine how she felt. She kept a close eye on me for a while after that, she has had a lot of sleepless nights too. I learned that who ever is closest to you goes thru a lot emotionally along with you. (My mother is my best friend, and I don't know how I would have made it without her help, mostly without her love.) During my next visit with my Oncology doctor I mentioned how my legs were feeling, by this time it had been at least a month since he had seen me last, and his reply to me was,( he was surprised because this usually happens a year after treatment). When I told him about how I was going to the bathroom he gave me a Vaginal Dilator size S, for me to insert into my vagina once a day for 15 minutes, this was suppose to open me up, I couldn't do it, the thought of sticking anything up there made me sick, his examinating me was enough, but I did and still do use the stoll softner. So like him I thought I was moving right along with my progress of getting back to normal. By this time people are really concerned about my health because I lost so much weight, what people didn't understand was that I was doing the best I could, food just didn't look or smell right, if I forced myself to eat at anytime, it was not going to stay down, so I ate when I was really hungry, and that wasn't often, all I knew was I felt better if I ate when I was hungry. Breakfast, lunch and dinner was out of the question, I could only eat one meal a day and I didn't know what time that would be, somedays I ddn't and couldn't eat at all, the thought of food made me sick. All I had strength enough to do was lay down, I tried to make myself walk as often as possible, at least 2 or 3 times a week, my mother and I would walk to the neighbor store, one time I actually was so weak I couldn't walk back, we had to get a ride back home which was only around the corner, I was so embrassed. So I stopped going out until I was able. In March of this year I noticed my right leg was swollen twice the size of my left leg, which was strange, and I really don't know the first day it swoll up, it had been feeling strange for a few days, I finally on that day really looked at my leg to see if my skin was turning dark like around my abdomen where the radiation rays had been aimed, my skin was almost black in that area. My right side has always been smaller than my left, I had Polio when I was three years old, ( back then there was no cure for it then, that was in 1952, so needless to say I am truly blessed, because most children that had Polio the same time I did died). I lived and the Polio settled in my right side of my body leaving the muscle in my right leg deflated and the right side of my body smaller than the left. I thought I had maybe done a little too much walking so for the next couple of days I stayed off my feet as much as possible, and some of the swelling went down. A couple of weeks later I had an appointment to see my GYN and I was telling him about how my leg had swollen up, and he told me I was lucky, because usually when that happens the swelling doesn't go away, this is also part of Lymphedema. Here are some symptoms of Lymphedema, if you notice any of the following, notify your doctor, nurse or cancer rehabilitation specialist.

Swelling in your adbomen, groin area, legs or feet.
Numbness, tingling, or achiness in your legs or feet.
A feeling of heaviness in your legs or feet.
Your clothing or shoes feel tight.
You gain weight for no known reason.

All of these symptoms started for me before my radiation treatments were finished, except for the last one. (Lymphedema cannot be prevented) A fourth of my feet (from the tip of my toes to the ball of my foot) are still numb, tingly and ache, my thighs bother me mostly at night they ache like a toothache, I have to sit up on the side of the bed a while before I can get up and walk around, I try to take a less pain medicine as possible but sometimes I don't get any relief until I do, if its going to rain or raining my thighs ache night and day. I am stiff from the amount of radiation I received, needless to say my nights are restless, when I lay in any positition for any length of time, it is very painful when I move my legs in my hip area. I could a one time raise my knees to my chest now if I am sitting down, I can't raise my right leg at all and can only raise my left leg about 1 1/2 inches off the floor. Putting on panty hose is out of the question, so I wear knee highs, getting them on is a job in itself. I sit down to put on pants I lay them on the floor and use my hands to lift my right leg, then lift my left leg as high as I can then pull my pants up to my knees and I stand up to finish . I walk with a cane without it I webble when I walk, the cane makes me feel more secure and steady. I don't know if this is a permanent condition or not. (I pray that its not)