December, 2018
Cancer
A journey
Having watched my parents die of cancer I thought I knew just how terrible cancer is, but I was wrong. You cannot truly understand the horrors of the disease until it’s your journey. Every cancer is different and I now know that every person’s experience is as individual different as the disease itself.
I was diagnosed with vaginal cancer in September. A primary vaginal cancer is very rare I was told. It usually starts somewhere else. I am 59 years old, I am post-menopausal and I had a hysterectomy in 2016. So vaginal bleeding, spotting was an immediate indication something was wrong. So off I went to see Dr. Summer Dewdney at Rush University Medical Center. She is awesome and I love and her PA-C, Margaret. After an exam and a biopsy, we heard those dreaded words, it’s cancer.
So where do you start when you hear those awful words. My husband and I just looked at each other trying to absorb the diagnosis. We don’t have money or insurance and cancer is very expensive. It’s all so scary and overwhelming. So the first thing was to apply for a program at Rush called Charity Care. Fortunately we qualified for 100% coverage for all hospital based care. One less thing to worry about. God bless Rush for having such an amazing program. I don’t know what we would have done without it.
I intend to tell my whole story, the good, the bad and the ugly. Things that perhaps I only shared with Dana, my husband of 23 years. The man is a saint and I am sure every person blessed with a spouse who takes care of every little thing while you battle cancer is aware of just how much their love and support matter. Because it is a battle.
I should say that Dr. Dewdney did my hysterectomy in 2016 when I had pre-cancerous cells in the endometrial lining. I had a total hysterectomy including ovaries, tubes and cervix. There was nothing left. That is how I first met Dr. Dewdney, so when my primary care doctor said go back to your oncologist at least I knew who to call.
After my biopsy came back positive for cancer, my doctor said she would take everything, including the pathology reports from my hysterectomy to the cancer committee that Friday. I saw Margaret, my wonderful PA-C the following week. I was told the next thing would be a CT scan with and without contrast. I’m slightly allergic to the contrast so I had to take prednsone before the scan. I am claustrophobic, so a CT scan was a little scary. The scan confirmed the location of the tumor. At this point, I was told it was Stage 2.
Stage 2, I suppose in the world of cancer isn’t bad. We were still so overwhelmed that I had cancer. I would just look at Dana and say Oh my God, I have cancer. And he would say yeah you do. After the CT scan I was told my treatment would be radiation and chemo and I was referred to Dr. Barry, my radiation oncologist. When we saw her, she again stated how rare it is to have a primary vaginal cancer. I was told I would have external radiation five days a week for five weeks with chemo once a week. She then ordered a PET scan. And then a MRI. Always another scan it seemed. We were at Rush everyday for weeks. All of this was done pretty quickly as all the scans needed to be done before they started treatment. The last scan before treatment began was what they called a simulation scan. They get you lined up how you need to be and place small dot tattoos so they can line you up correctly everyday. It was time consuming but not that bad.
So on October 2nd I had my first appointment with the Trilogy radiation machine. I had 3 therapist who handled my treatment. They were all supportive and nice.
Trilogy is a state of the art machine, it is very big and a little intimidating. You lay on this table and they use lasers to line up your tattoos to make the radiation is going to the right place. This huge machine rotates around you delivering radiation to the targeted areas. I had been told of the possible side effects of radiation therapy. They included radiation burns, pain when urinating, nausea, and diarrhea were the most common. But when giving you informed consent, they have to tell you the less common ones too and those are pretty scary. You can end up with bladder problems severe enough to warrant a colostomy bag as well as rectal problems as those are the areas getting hit with the radiation. All kinds of bad scary stuff can result from treatment, but you don’t really have a lot of choice, the radiation you are told is your best bet to eradicate this type of cancer.
My schedule for the next 5 weeks was radiation Monday, Wednesday, Thursday and Friday at 1:20 pm. Tuesdays were my really long days. I had blood drawn in the morning, saw my gynecological oncologist (or her PA-C), had radiation, saw my radiation oncologist and then had 4 hours in the chemotherapy infusion department. Most weeks we would get Rush at around 7 or 8 in the morning and leave around 5:00. Dana went to every single appointment and scan and test and procedure with me. That man really loves me!
The first couple of weeks were not too bad. I think that we were still trying to emotionally absorb the cancer diagnosis. It’s really hard to believe it’s true in some way. I just kept thinking “this isn’t happening to me”. But the reality of treatment certainly said otherwise. Some days I would just look at Dana and say I have cancer, and he would say I know. There are lots of hugs and touches and hand holding and I love yous. Cancer sure drove home to me just how much he loves me. If I ever thought different, I don’t anymore. He would give me the world if he could.
They tell you all possible side effects and they tell you are cumulative. They aren’t kidding.The first couple of weeks I did okay. A little nausea, but food still tasted good and I was resting a lot. The feeling of exhaustion doesn’t take long to show it’s face and it gets progressively worse. By the end of the second week, the side effects started showing up. More nausea and the loose stools started. Overall started feeling pretty crappy, just tired and sick all the time. Every muscle was achy and sore. Just getting to Rush everyday for radiation was such an effort. We were taking public transportation which was two buses and the el. We finally qualified for rides from PACE and they pick you up at your home and bring you back after treatment. The American Cancer Society provides vouchers which cover the cost. It helped a lot, the effort to climb the stairs to our third floor apartment was a little easier.
And as I’m lying on the table being radiated, it hit - Holy Shit, I have cancer. Not just any cancer, I have a primary vaginal cancer, which apparently is kinda rare. It just rattles around in your head. When I first started radiation, my friend Cathy talked to me about vitalization. So one day I decided that while I was being radiated, I would envision a lot of little Pac Man guys and gals gobbling up my tumor. And I would talk to them and cheer them on. And it helped and when I told Dana, he didn’t even laugh at me or make a joke. For anyone who knows my husband, you will understand that this is a little out of character for him! Have I mentioned lately how much I love my husband?
Week 3 of external radiation brought with it some quite unpleasant side effects. The diarrhea really kicked in and I was a mess. Literally a mess, there were times I couldn’t even get to the bathroom. Did I mention that my husband is a saint, nothing fazes him. I would be there will it dripping down my legs and on the floor and he would just calmly clean me up and the mess I made. I would be in tears and just keep telling him I’m so sorry. And, well Dana being Dana, he just put me back into a clean bed, kissed me and told me how much he loves me. I think I slept most of the day when I wasn’t at Rush. And then it started to burn when I had to pee. So painful I would try to hold it as long as I could. I cannot find the words to adequately express the misery, the exhaustion both physical and emotional, the embarrassment of not being able to control your bodily functions. Sadly, week 4 brought more of the same.
I had 25 sessions of external radiation and 5 sessions of chemotherapy. It was not fun, and yet I kept thinking I should just suck it up and stop whining because so many cancer patients have it much worse. I have since come to the realization that my reality is just as horrible for me as theirs is to them and I was being unfair to myself by not allowing myself to just cry and be miserable out loud.
Then came the Brachytherapy, also know as internal radiation, and I would not wish this on my worse enemy. It involves an in-patient hospital visit, I stayed 3 nights. Three nights, four days of torture. Torture is the only word I use to describe the experience. Let me walk you through this process. But first I suggest before you read about this, to really understand the torture you should google High-Dose Rate (HDR) Brachytherapy with Interstitial Implants and be sure to look at the pictures of this device.
Okay, now that you have had chance to see this torture device, I’ll tell you all about it. The day before I was on a liquid diet and had my last chemo. That night I had to do a bowel cleanse which is a nice way of saying drinking something that makes you have diarrhea all night. Wednesday we arrived bright and early at the hospital to be admitted. Then it’s up to the pre-op area where you sit in a waiting room till they call your name. I have been dreading this from the get-go, and the more I researched it and talked to people who had it, I was beyond dreading, I was very scared and did not want to do it. But sometimes you do have to suck up and do it anyway, so we sat and waited. When they called me, we went back and it’s the usual, taking vitals, changing into the lovely hospital gown, answering a bunch of questions and since I’m diabetic they checked my blood sugar. And there you sit and wait. Dana was holding my hand and I was hugging my teddy bear. The anesthesiologist came in talk about what they would be using and placing the epidural. Now I knew they were going to put in an epidural for pain management and I was scared of having one. They made Dana leave and take my bear, it’s a sterile procedure. Truthfully I don’t know how much more sterile that little holding room was without Dana and Kimmie (said bear)), but he took our stuff and left. There were 2 anesthesiologists left with me, one a really nice resident, the other I didn’t like so much. They had me sit with the back of my knees pressed up against the gurney and they brought in this thing that you put your feet on and bend over, it has a pillow like a massage chair. Now you are in the proper position for them to put a needle and a catheter in your back. Admittedly it was not as bad as I thought. Then you lay on the gurney and after a few minutes I was numb from the waist down. They used a saddle block I’m told. And off we went to the OR. After greeting Dr. Barry (radiation oncologist) they put some really nice drugs in my IV and I dosed off. Dr. Barry inserted nine needles in and around my tumor and then sutured the guide holding it in place. When I was moved to recovery, I was still pretty numb so doing okay. They hooked up the pain medication to my epidural and gave me that lifesaving button! From the time I was aware again I kept asking when I could see Dana. I was in recovery for over an hour and they kept saying I would see him on my way over the radiation oncology building. I didn’t. The next step was indeed radiation oncology where at least there were familiar faces. My favorite therapist from my time on the Trilogy machine made a point to say hi and see how I was doing. With much care, they transferred me from the gurney to the table for a CT scan in check placement. With a thumbs up from them, I was moved back to the gurney and whisked away for an MRI to again confirm placement. Lots of being moved around with a device sutured to your vaginal opening is not a pleasant experience as the numbing was wearing off and the pain button became my life line. For the MRI, they had to disconnect my pain meds and by the time the hour was up and I was back on the gurney and reattached to my pain meds, my pain level had reached an eight. It’s really hard to catch up when your pain is that out of control. The scans are used by the oncologist and the physicist to plan treatment.
Finally, around 4:00 pm I was taken to my room. Then before they could transfer me to the bed, they moved me to another room. All I could do was ask the nurses about Dana. I just wanted Dana so bad at that point. After transferring me to the bed and getting me as situated as I would be for the next 3 days, the nurse found Dana in the waiting room. I have never been so happy to see his handsome face. The nurses continued to get me situated, reviewed medication and my pain meds were changed to something a little stronger. I remained on a clear liquid diet for the duration of this treatment and was given Imodium to insure I didn’t have a bowel movement. I was sore, tired and miserable, but I was finally in a bed which was more comfortable than the gurney, I had Dana and I had my bears (Kimmie and KimBear) and a little duck named Alice. Dana held my hand as I told him about my ordeal so far. It was so nice to have him next to me. I love that man so much.
If I thought the day up till then had been eventful and stressful, I had no idea what those words meant. At 5:30 they rolled my bed down to radiation oncology for my first of 5 treatments. I thought I knew pain, I had no idea. They spent almost 2 hours moving the device and changing the rods and testing and more testing. By the time they finally decided on everything I was fighting back the tears. The actual treatment took about 10 minutes. After when they asked my pain level I was easily at a 9. They took me back to my room and bolstered my pain meds to try to get that number down. When everyone left my room I was down to about a 7 and Dana was rubbing my face and I knew he could see the pain in my eyes. I just asked him, can I cry now. He said yes and so I did, the pain was almost unbearable. I hugged my bears and held on to Dana’s hand and I cried and pushed that button as often as it would let me. Fortunately for me, Wednesday is one of Dana’s nights off from work so he was able to spend the night at the hospital with me. I told him I was so close to saying enough. Just get this thing out of me and let me go home. The pain finally got to a manageable level and we slept. I would not wish that procedure and that much pain on anyone.
Thursday I was scheduled for 2 treatments, one in the late morning and one in the afternoon. Dr. Barry was at her other office so her partner oversaw these 2 treatments. After all the jostling on Wednesday, I was please that Thursday went relativity well. It was the easiest of the 4 days and I was able to keep the pain mostly under control. Dana left after I was back from the second treatment to get some sleep before going to work. I spent the night with my bears securely in my arms and mostly slept. When I would wake up, I would just press the pain button to make sure I stayed as on top of the pain as much as possible and then go back to sleep.
Friday, Dana got to the hospital just as I was headed to my first treatment of the day. So I got a quick kiss and was wheeled down to radiation. The treatment wasn’t too bad and I was back upstairs with Dana in about an hour. One more treatment and then they would remove the device. Now, one thing I don’t understand is that if it takes a saddle block to numb you and good drugs to make you relax when they put this in you, why do you not need them when they remove it? I’m here to tell you they do need those things. And anyone who has had this thing yanked out of them would agree.
So after my last treatment I was taken back to my room. They were already there setting up for the removal. I was pressing my pain button like crazy. Dr. Barry’s resident is so nice. I can’t remember his name, but he was so sweet and reassuring,even when he knew they were about to inflict an overwhelming pain to my poor vagina! When Nicky (aka Alex) was born, I delivered without any drugs. A painful experience but I was given demeral right after. And I had this beautiful baby. Sadly, this was more painful, no demeral and no beautiful baby.
So they cut the sutures, and took hold of my torture device and firmly in one yank pulled it out while I screamed. They then applied very painful pressure to my vagina to stop the bleeding. Truthfully, I’m not sure if the removal or the pressure after hurt more. I just cried, hugged my bears and pushed my pain button. I have never experienced so much pain in my life. It’s so unfair that cancer is so terrible and the treatment to make you better is even worse. You just feel so much sicker. I’m still waiting for the “feel better” part. Then they removed the catheter. At last I could move my legs and sit up a little. I was also allowed to resume a regular diet. Dana returned from an errand right after it was done. I told him never again. I would not do that again.
As glad as I was that it was gone, my legs felt wobbly and I was nauseous. I was in pain and I felt pretty sick. In fact it was the only time (so far) that I actually threw up. I fell asleep. Sleep is my new best friend along with anti nausea medication. Friday night I was able to pee a couple of times, so I knew I could go home on Saturday. The urge to pee was urgent and twice I wet the bed. The nurses cleaned it and me up and I was able to fall back asleep. When I woke up Saturday morning I was feeling pretty nauseous. Dr. Dewdney stopped by to check on me when she was doing rounds. She said they would see how I was through the morning and then decide if I could go home. She didn’t want to send me home if I was having a lot of nausea.
Cancer just really sucks. I watched 2 people I love dearly die from it and still didn’t really understand the horrors of the disease under I had it too. I don’t look like a “cancer” patient. I don’t look sick. I didn’t lose a bunch of weight during treatment, I had a low dose of chemo so I didn’t lose my hair. Outwardly, I still look like me. I think it makes it harder for some people to look at me and see just how sick I am. They think I look fine so I can’t really be that sick. How wrong they are… I was sick and 8 weeks after treatment has ended, I am still recovering. There are plenty of days where I just want to sleep.
I went for my follow-up with Margaret (the P.A.) in early December and talked about the problems I was having, no appetite, constipation, and no bladder control. She gave me advise on things I could do to help. She told me it can take time to recover from the effects of radiation and to not be too hard on myself. She scheduled me for a PET scan in early February. Then we will find out if the cancer is gone. Until then, I just try to get stronger and not think about it too much.
We thought the Charity Care through Rush would cover all my treatment, but alas it does not. So now I have bills from Radiology, Pathology and Anesthesiology that I can’t pay. With me being sick and Dana staying by my side to take care of me we fell behind on our rent and are trying to catch up, but it’s not easy. I am praying 2019 will be a better year!
We have the follow up PET scan on February 5th and will get the results on Friday, February 8th. With luck, the scan will show the cancer is gone…
Cancer
A journey
Having watched my parents die of cancer I thought I knew just how terrible cancer is, but I was wrong. You cannot truly understand the horrors of the disease until it’s your journey. Every cancer is different and I now know that every person’s experience is as individual different as the disease itself.
I was diagnosed with vaginal cancer in September. A primary vaginal cancer is very rare I was told. It usually starts somewhere else. I am 59 years old, I am post-menopausal and I had a hysterectomy in 2016. So vaginal bleeding, spotting was an immediate indication something was wrong. So off I went to see Dr. Summer Dewdney at Rush University Medical Center. She is awesome and I love and her PA-C, Margaret. After an exam and a biopsy, we heard those dreaded words, it’s cancer.
So where do you start when you hear those awful words. My husband and I just looked at each other trying to absorb the diagnosis. We don’t have money or insurance and cancer is very expensive. It’s all so scary and overwhelming. So the first thing was to apply for a program at Rush called Charity Care. Fortunately we qualified for 100% coverage for all hospital based care. One less thing to worry about. God bless Rush for having such an amazing program. I don’t know what we would have done without it.
I intend to tell my whole story, the good, the bad and the ugly. Things that perhaps I only shared with Dana, my husband of 23 years. The man is a saint and I am sure every person blessed with a spouse who takes care of every little thing while you battle cancer is aware of just how much their love and support matter. Because it is a battle.
I should say that Dr. Dewdney did my hysterectomy in 2016 when I had pre-cancerous cells in the endometrial lining. I had a total hysterectomy including ovaries, tubes and cervix. There was nothing left. That is how I first met Dr. Dewdney, so when my primary care doctor said go back to your oncologist at least I knew who to call.
After my biopsy came back positive for cancer, my doctor said she would take everything, including the pathology reports from my hysterectomy to the cancer committee that Friday. I saw Margaret, my wonderful PA-C the following week. I was told the next thing would be a CT scan with and without contrast. I’m slightly allergic to the contrast so I had to take prednsone before the scan. I am claustrophobic, so a CT scan was a little scary. The scan confirmed the location of the tumor. At this point, I was told it was Stage 2.
Stage 2, I suppose in the world of cancer isn’t bad. We were still so overwhelmed that I had cancer. I would just look at Dana and say Oh my God, I have cancer. And he would say yeah you do. After the CT scan I was told my treatment would be radiation and chemo and I was referred to Dr. Barry, my radiation oncologist. When we saw her, she again stated how rare it is to have a primary vaginal cancer. I was told I would have external radiation five days a week for five weeks with chemo once a week. She then ordered a PET scan. And then a MRI. Always another scan it seemed. We were at Rush everyday for weeks. All of this was done pretty quickly as all the scans needed to be done before they started treatment. The last scan before treatment began was what they called a simulation scan. They get you lined up how you need to be and place small dot tattoos so they can line you up correctly everyday. It was time consuming but not that bad.
So on October 2nd I had my first appointment with the Trilogy radiation machine. I had 3 therapist who handled my treatment. They were all supportive and nice.
Trilogy is a state of the art machine, it is very big and a little intimidating. You lay on this table and they use lasers to line up your tattoos to make the radiation is going to the right place. This huge machine rotates around you delivering radiation to the targeted areas. I had been told of the possible side effects of radiation therapy. They included radiation burns, pain when urinating, nausea, and diarrhea were the most common. But when giving you informed consent, they have to tell you the less common ones too and those are pretty scary. You can end up with bladder problems severe enough to warrant a colostomy bag as well as rectal problems as those are the areas getting hit with the radiation. All kinds of bad scary stuff can result from treatment, but you don’t really have a lot of choice, the radiation you are told is your best bet to eradicate this type of cancer.
My schedule for the next 5 weeks was radiation Monday, Wednesday, Thursday and Friday at 1:20 pm. Tuesdays were my really long days. I had blood drawn in the morning, saw my gynecological oncologist (or her PA-C), had radiation, saw my radiation oncologist and then had 4 hours in the chemotherapy infusion department. Most weeks we would get Rush at around 7 or 8 in the morning and leave around 5:00. Dana went to every single appointment and scan and test and procedure with me. That man really loves me!
The first couple of weeks were not too bad. I think that we were still trying to emotionally absorb the cancer diagnosis. It’s really hard to believe it’s true in some way. I just kept thinking “this isn’t happening to me”. But the reality of treatment certainly said otherwise. Some days I would just look at Dana and say I have cancer, and he would say I know. There are lots of hugs and touches and hand holding and I love yous. Cancer sure drove home to me just how much he loves me. If I ever thought different, I don’t anymore. He would give me the world if he could.
They tell you all possible side effects and they tell you are cumulative. They aren’t kidding.The first couple of weeks I did okay. A little nausea, but food still tasted good and I was resting a lot. The feeling of exhaustion doesn’t take long to show it’s face and it gets progressively worse. By the end of the second week, the side effects started showing up. More nausea and the loose stools started. Overall started feeling pretty crappy, just tired and sick all the time. Every muscle was achy and sore. Just getting to Rush everyday for radiation was such an effort. We were taking public transportation which was two buses and the el. We finally qualified for rides from PACE and they pick you up at your home and bring you back after treatment. The American Cancer Society provides vouchers which cover the cost. It helped a lot, the effort to climb the stairs to our third floor apartment was a little easier.
And as I’m lying on the table being radiated, it hit - Holy Shit, I have cancer. Not just any cancer, I have a primary vaginal cancer, which apparently is kinda rare. It just rattles around in your head. When I first started radiation, my friend Cathy talked to me about vitalization. So one day I decided that while I was being radiated, I would envision a lot of little Pac Man guys and gals gobbling up my tumor. And I would talk to them and cheer them on. And it helped and when I told Dana, he didn’t even laugh at me or make a joke. For anyone who knows my husband, you will understand that this is a little out of character for him! Have I mentioned lately how much I love my husband?
Week 3 of external radiation brought with it some quite unpleasant side effects. The diarrhea really kicked in and I was a mess. Literally a mess, there were times I couldn’t even get to the bathroom. Did I mention that my husband is a saint, nothing fazes him. I would be there will it dripping down my legs and on the floor and he would just calmly clean me up and the mess I made. I would be in tears and just keep telling him I’m so sorry. And, well Dana being Dana, he just put me back into a clean bed, kissed me and told me how much he loves me. I think I slept most of the day when I wasn’t at Rush. And then it started to burn when I had to pee. So painful I would try to hold it as long as I could. I cannot find the words to adequately express the misery, the exhaustion both physical and emotional, the embarrassment of not being able to control your bodily functions. Sadly, week 4 brought more of the same.
I had 25 sessions of external radiation and 5 sessions of chemotherapy. It was not fun, and yet I kept thinking I should just suck it up and stop whining because so many cancer patients have it much worse. I have since come to the realization that my reality is just as horrible for me as theirs is to them and I was being unfair to myself by not allowing myself to just cry and be miserable out loud.
Then came the Brachytherapy, also know as internal radiation, and I would not wish this on my worse enemy. It involves an in-patient hospital visit, I stayed 3 nights. Three nights, four days of torture. Torture is the only word I use to describe the experience. Let me walk you through this process. But first I suggest before you read about this, to really understand the torture you should google High-Dose Rate (HDR) Brachytherapy with Interstitial Implants and be sure to look at the pictures of this device.
Okay, now that you have had chance to see this torture device, I’ll tell you all about it. The day before I was on a liquid diet and had my last chemo. That night I had to do a bowel cleanse which is a nice way of saying drinking something that makes you have diarrhea all night. Wednesday we arrived bright and early at the hospital to be admitted. Then it’s up to the pre-op area where you sit in a waiting room till they call your name. I have been dreading this from the get-go, and the more I researched it and talked to people who had it, I was beyond dreading, I was very scared and did not want to do it. But sometimes you do have to suck up and do it anyway, so we sat and waited. When they called me, we went back and it’s the usual, taking vitals, changing into the lovely hospital gown, answering a bunch of questions and since I’m diabetic they checked my blood sugar. And there you sit and wait. Dana was holding my hand and I was hugging my teddy bear. The anesthesiologist came in talk about what they would be using and placing the epidural. Now I knew they were going to put in an epidural for pain management and I was scared of having one. They made Dana leave and take my bear, it’s a sterile procedure. Truthfully I don’t know how much more sterile that little holding room was without Dana and Kimmie (said bear)), but he took our stuff and left. There were 2 anesthesiologists left with me, one a really nice resident, the other I didn’t like so much. They had me sit with the back of my knees pressed up against the gurney and they brought in this thing that you put your feet on and bend over, it has a pillow like a massage chair. Now you are in the proper position for them to put a needle and a catheter in your back. Admittedly it was not as bad as I thought. Then you lay on the gurney and after a few minutes I was numb from the waist down. They used a saddle block I’m told. And off we went to the OR. After greeting Dr. Barry (radiation oncologist) they put some really nice drugs in my IV and I dosed off. Dr. Barry inserted nine needles in and around my tumor and then sutured the guide holding it in place. When I was moved to recovery, I was still pretty numb so doing okay. They hooked up the pain medication to my epidural and gave me that lifesaving button! From the time I was aware again I kept asking when I could see Dana. I was in recovery for over an hour and they kept saying I would see him on my way over the radiation oncology building. I didn’t. The next step was indeed radiation oncology where at least there were familiar faces. My favorite therapist from my time on the Trilogy machine made a point to say hi and see how I was doing. With much care, they transferred me from the gurney to the table for a CT scan in check placement. With a thumbs up from them, I was moved back to the gurney and whisked away for an MRI to again confirm placement. Lots of being moved around with a device sutured to your vaginal opening is not a pleasant experience as the numbing was wearing off and the pain button became my life line. For the MRI, they had to disconnect my pain meds and by the time the hour was up and I was back on the gurney and reattached to my pain meds, my pain level had reached an eight. It’s really hard to catch up when your pain is that out of control. The scans are used by the oncologist and the physicist to plan treatment.
Finally, around 4:00 pm I was taken to my room. Then before they could transfer me to the bed, they moved me to another room. All I could do was ask the nurses about Dana. I just wanted Dana so bad at that point. After transferring me to the bed and getting me as situated as I would be for the next 3 days, the nurse found Dana in the waiting room. I have never been so happy to see his handsome face. The nurses continued to get me situated, reviewed medication and my pain meds were changed to something a little stronger. I remained on a clear liquid diet for the duration of this treatment and was given Imodium to insure I didn’t have a bowel movement. I was sore, tired and miserable, but I was finally in a bed which was more comfortable than the gurney, I had Dana and I had my bears (Kimmie and KimBear) and a little duck named Alice. Dana held my hand as I told him about my ordeal so far. It was so nice to have him next to me. I love that man so much.
If I thought the day up till then had been eventful and stressful, I had no idea what those words meant. At 5:30 they rolled my bed down to radiation oncology for my first of 5 treatments. I thought I knew pain, I had no idea. They spent almost 2 hours moving the device and changing the rods and testing and more testing. By the time they finally decided on everything I was fighting back the tears. The actual treatment took about 10 minutes. After when they asked my pain level I was easily at a 9. They took me back to my room and bolstered my pain meds to try to get that number down. When everyone left my room I was down to about a 7 and Dana was rubbing my face and I knew he could see the pain in my eyes. I just asked him, can I cry now. He said yes and so I did, the pain was almost unbearable. I hugged my bears and held on to Dana’s hand and I cried and pushed that button as often as it would let me. Fortunately for me, Wednesday is one of Dana’s nights off from work so he was able to spend the night at the hospital with me. I told him I was so close to saying enough. Just get this thing out of me and let me go home. The pain finally got to a manageable level and we slept. I would not wish that procedure and that much pain on anyone.
Thursday I was scheduled for 2 treatments, one in the late morning and one in the afternoon. Dr. Barry was at her other office so her partner oversaw these 2 treatments. After all the jostling on Wednesday, I was please that Thursday went relativity well. It was the easiest of the 4 days and I was able to keep the pain mostly under control. Dana left after I was back from the second treatment to get some sleep before going to work. I spent the night with my bears securely in my arms and mostly slept. When I would wake up, I would just press the pain button to make sure I stayed as on top of the pain as much as possible and then go back to sleep.
Friday, Dana got to the hospital just as I was headed to my first treatment of the day. So I got a quick kiss and was wheeled down to radiation. The treatment wasn’t too bad and I was back upstairs with Dana in about an hour. One more treatment and then they would remove the device. Now, one thing I don’t understand is that if it takes a saddle block to numb you and good drugs to make you relax when they put this in you, why do you not need them when they remove it? I’m here to tell you they do need those things. And anyone who has had this thing yanked out of them would agree.
So after my last treatment I was taken back to my room. They were already there setting up for the removal. I was pressing my pain button like crazy. Dr. Barry’s resident is so nice. I can’t remember his name, but he was so sweet and reassuring,even when he knew they were about to inflict an overwhelming pain to my poor vagina! When Nicky (aka Alex) was born, I delivered without any drugs. A painful experience but I was given demeral right after. And I had this beautiful baby. Sadly, this was more painful, no demeral and no beautiful baby.
So they cut the sutures, and took hold of my torture device and firmly in one yank pulled it out while I screamed. They then applied very painful pressure to my vagina to stop the bleeding. Truthfully, I’m not sure if the removal or the pressure after hurt more. I just cried, hugged my bears and pushed my pain button. I have never experienced so much pain in my life. It’s so unfair that cancer is so terrible and the treatment to make you better is even worse. You just feel so much sicker. I’m still waiting for the “feel better” part. Then they removed the catheter. At last I could move my legs and sit up a little. I was also allowed to resume a regular diet. Dana returned from an errand right after it was done. I told him never again. I would not do that again.
As glad as I was that it was gone, my legs felt wobbly and I was nauseous. I was in pain and I felt pretty sick. In fact it was the only time (so far) that I actually threw up. I fell asleep. Sleep is my new best friend along with anti nausea medication. Friday night I was able to pee a couple of times, so I knew I could go home on Saturday. The urge to pee was urgent and twice I wet the bed. The nurses cleaned it and me up and I was able to fall back asleep. When I woke up Saturday morning I was feeling pretty nauseous. Dr. Dewdney stopped by to check on me when she was doing rounds. She said they would see how I was through the morning and then decide if I could go home. She didn’t want to send me home if I was having a lot of nausea.
Cancer just really sucks. I watched 2 people I love dearly die from it and still didn’t really understand the horrors of the disease under I had it too. I don’t look like a “cancer” patient. I don’t look sick. I didn’t lose a bunch of weight during treatment, I had a low dose of chemo so I didn’t lose my hair. Outwardly, I still look like me. I think it makes it harder for some people to look at me and see just how sick I am. They think I look fine so I can’t really be that sick. How wrong they are… I was sick and 8 weeks after treatment has ended, I am still recovering. There are plenty of days where I just want to sleep.
I went for my follow-up with Margaret (the P.A.) in early December and talked about the problems I was having, no appetite, constipation, and no bladder control. She gave me advise on things I could do to help. She told me it can take time to recover from the effects of radiation and to not be too hard on myself. She scheduled me for a PET scan in early February. Then we will find out if the cancer is gone. Until then, I just try to get stronger and not think about it too much.
We thought the Charity Care through Rush would cover all my treatment, but alas it does not. So now I have bills from Radiology, Pathology and Anesthesiology that I can’t pay. With me being sick and Dana staying by my side to take care of me we fell behind on our rent and are trying to catch up, but it’s not easy. I am praying 2019 will be a better year!
We have the follow up PET scan on February 5th and will get the results on Friday, February 8th. With luck, the scan will show the cancer is gone…
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