Well....it happened! The day after chemo, I started losing my hair. At first I thought I was imagining it because I shed hair a lot anyway because of my Hypothyroidism. This just kept getting worse...every time I would run my hands through my hair, I would pull out 15-20 hairs. By Sunday, everywhere I would go, I would leave a trail of hairs...hairs in my food, in my mouth, on the floor, all over our bed....it was just getting really annoying!! So, I had David just shave it off.....and I was ready for it....or, I thought I was!!
When I started seeing my hair falling on the floor, it just hit me so hard!! I started bawling like a baby....it just made me so sad!! It was like the final blow kinda, like this made it finally totally real and there was no going back!
I was very shocked when I had to go look in the mirror at myself...I could barely do it!! I just felt so ...I don't know...so inhuman almost...so genderless...like my womanhood had been stripped! It was very traumatic!!
At this point, I had about an eighth of an inch of hair..it was very uncomfortable! My head felt cold and weird, and I hated it!! I was used to tons of hair and now this fuzz...when I laid my head on my pillow, the hairs would pull and my scalp is very tender right now from the hair loss so I was miserable!!
David went back and shaved me closer and this helped a lot! Now the hairs are not pulling anymore! It is much more comfortable!! But, that cold sensation feels so weird and I am still not thrilled about it...still feel like I look like a boy! But, I have to face it!! I must....there is no other choice!!
When my boys got home from church and I opened the door they all just kinda stood there for a minute. The twins smiled and my oldest said, "Mom, you look like me!!" But, my poor middle child just looked with his big brown eyes and he got pale and looked like he was gonna hit the floor....he said, "Mama, oh...I am scared!" and tears filled up his eyes and I just held him and explained that this didn't mean I was any more sick....that we just had to do it because it was all falling out and that it would come back. He talked to me a bit about it and seemed to feel better...but, it was just such an emotionally sad moment!!
I had a pink baseball cap that I had bought for when it fell out. I have been wearing that....I need to get me some more hats and maybe bandanas and all...I think it will help me to have some cute headware!
So, this is where I am at today...kinda down about my hair..but it's just hair! It will grow back!!
Monday, April 19, 2010
Thursday, April 15, 2010
Second Chemo Round
Well, I first had to go to the hospital to get some blood drawn for my Thyroid levels. My doctor thought they would be able to draw from my port but when I got there, the lab tech told me they were not trained and only a trained RN could do it. So she drew from my hand and it went right in, didn't hurt at all, BUT when I got to the Cancer Center for chemo, it had a huge knot full of blood and was a mess!!
Went in early for chemo. They went on and took me back quickly so I was glad I got there early. I went in the lab first to get more blood drawn. I showed her the hand that was all messed up and she got me an ice bag and drew the blood out of my arm.
I was then taken back to the office to wait on the doctor (didn't think I would see him every time but was told I would). First the nurse came in and took my vitals and asked how I was doing had I experienced side effects, etc.
The Physician's assistant came in to see me and she was so nice! They brought my blood work results in and she said my white cell count had dropped a little but was holding strong so we could continue with chemo. They then brought in my other test results and she said my blood sugar was a little high and would need to be monitored. She said, "You sure don't need to be diabetic with all you already have to deal with!!" I totally agreed!! She took a look at my arms...Ya see every since I can remember, I have broken out really badly in spring all over my arms...just found out the other night that it is sun sensitivity!! She gave me some Hydrocortisone cream to put on it twice a day and told me to stay outta the sun!!
Next, my doctor came in and he asked how I was doing! He said overall it sounded like things were going great. The conversation was pretty short. I had him fill out a form for me to get some financial help...the Lymphoma society gives $150 a year to those with Hodgkins who are being actively treated...every bit helps right now!!
The doctor took me back to the now familiar chemo room and it was once again slam full...so sad that so many people are suffering!!! I had to wait there again...they came and got me shortly and took me to another room...I wasn't thrilled about this room...It had three chemo chairs, not divided..so you were right on top of one another! There was only one TV too.
They soon came to start my drips for predrugs. She cleaned and cleaned and cleaned my port area...I swear that I hate that smell!! Both times it has made me so sick!! She then got the numbing spray out and I told her I wanted to see how it felt putting the needle in without the spray. It wasn't too bad though it did sting a little! She then taped me down with that nasty smelling plastic tape..very strong smells!!This time I was able to see what I was being given! They gave me a bag of Decradon and then a syringe full of Zofran and once again had me swallow the two Tylenol. Soon after that, the nurse came and got me and took me back to the regular chemo room with the dividers and my own TV so I was happy!
About this time, I met Morgan! Morgan is about 175 pounds and solid black with the most soulful eyes!! She is a therapy dog! A huge Great Dane and she came around to everyone to say hello. I wish I had my camera and could have gotten a pic...maybe next time I will see her again. She came and let me pet her twice and they would tell her to speak and she would. It was a special time..
I looked and once again those two lonely hats were sitting there...I got a little sad again thinking of their owners and why they hadn't come back to claim them....but I thought, "No!" I am gonna imagine the best instead of the worst! I am gonna just imagine that they left them there because they were cured and never had to come back....I sure hope someone claims those hats soon!!
Soon, the fun began....the red one went in first...I think she sat and put it in for about 15 minutes but I am not sure. Didn't really feel anything at this point again, just had the nasty, salty taste from the saline. I waited about 20 or 30 minutes and she came with the next drug....the Vinblastine...it was uneventful too....by this time I was eating my lunch and it was pretty good...I had a chicken salad with ranch dressing, a roll and a little cup of strawberry icecream so I was happy!
I looked around and didn't recognize anyone from the last time....just other poor Cancer victims, some bent over and really sick, some seeming to be ok....just a mix, I guess! No one was thrilled to be there, that you could tell!!
Then the nurse came with the Bleomycin and I didn't really feel anything with that either...about twenty minutes later came the bad one...the DACARBAZINE!!! Immediately my stomach started hurting but didn't seem to hurt as much as the last time!But, my jawline started going numb...just tingling here and there..nothing major, just annoying!
When this finally got done after 40 minutes of dripping..the nurse came and took out the needle from my port and held pressure on it really good for a couple of minutes and sent me on my way...I was so ready to go home!! I had been there about 6 hours and was so tired out!!!
On the way home, the face numbness got really worse!!! It was spreading all over my face and was just horrible!! It felt like tiny bugs crawling all over my face...I couldn't stand it!!! It was still doing it about six hours later! I called my doctor and they had him call me...he called me right back and I told him what was going on with my face. He said he had never heard of that with any patients but that chemo did weird things sometimes! He said if it got worse to go to the ER and he would call me in the morning and have me come in if it hadn't gone away!!
I was up most of the night, it just would not stop and was driving me nuts!! I could not stand it...finally it stopped about 4:00am!!! Over 13 hours of a face-numbing nightmare!!! I was so relieved it was gone and has not come back so I didn't have to go in. I had a lot of people praying last night and I know the Lord took care of me!! I pray that never happens again, it was so scary and so annoying!!
So that was my adventures in chemo land story....soon we will be talking hair loss...my hair is slowly coming out, actually, pretty badly today!! Every time I run my fingers through my hair, about 15 come out in my hands so it's not gonna be long!!
My sweet husband came up to me with a pen and drew a little sweet smiley face on my port bandage!! That just was so sweet to me and so I had him take a pic so I could share it with you guys.
Will be back soon with more info...thanks for reading!!!
Went in early for chemo. They went on and took me back quickly so I was glad I got there early. I went in the lab first to get more blood drawn. I showed her the hand that was all messed up and she got me an ice bag and drew the blood out of my arm.
I was then taken back to the office to wait on the doctor (didn't think I would see him every time but was told I would). First the nurse came in and took my vitals and asked how I was doing had I experienced side effects, etc.
The Physician's assistant came in to see me and she was so nice! They brought my blood work results in and she said my white cell count had dropped a little but was holding strong so we could continue with chemo. They then brought in my other test results and she said my blood sugar was a little high and would need to be monitored. She said, "You sure don't need to be diabetic with all you already have to deal with!!" I totally agreed!! She took a look at my arms...Ya see every since I can remember, I have broken out really badly in spring all over my arms...just found out the other night that it is sun sensitivity!! She gave me some Hydrocortisone cream to put on it twice a day and told me to stay outta the sun!!
Next, my doctor came in and he asked how I was doing! He said overall it sounded like things were going great. The conversation was pretty short. I had him fill out a form for me to get some financial help...the Lymphoma society gives $150 a year to those with Hodgkins who are being actively treated...every bit helps right now!!
The doctor took me back to the now familiar chemo room and it was once again slam full...so sad that so many people are suffering!!! I had to wait there again...they came and got me shortly and took me to another room...I wasn't thrilled about this room...It had three chemo chairs, not divided..so you were right on top of one another! There was only one TV too.
They soon came to start my drips for predrugs. She cleaned and cleaned and cleaned my port area...I swear that I hate that smell!! Both times it has made me so sick!! She then got the numbing spray out and I told her I wanted to see how it felt putting the needle in without the spray. It wasn't too bad though it did sting a little! She then taped me down with that nasty smelling plastic tape..very strong smells!!This time I was able to see what I was being given! They gave me a bag of Decradon and then a syringe full of Zofran and once again had me swallow the two Tylenol. Soon after that, the nurse came and got me and took me back to the regular chemo room with the dividers and my own TV so I was happy!
About this time, I met Morgan! Morgan is about 175 pounds and solid black with the most soulful eyes!! She is a therapy dog! A huge Great Dane and she came around to everyone to say hello. I wish I had my camera and could have gotten a pic...maybe next time I will see her again. She came and let me pet her twice and they would tell her to speak and she would. It was a special time..
I looked and once again those two lonely hats were sitting there...I got a little sad again thinking of their owners and why they hadn't come back to claim them....but I thought, "No!" I am gonna imagine the best instead of the worst! I am gonna just imagine that they left them there because they were cured and never had to come back....I sure hope someone claims those hats soon!!
Soon, the fun began....the red one went in first...I think she sat and put it in for about 15 minutes but I am not sure. Didn't really feel anything at this point again, just had the nasty, salty taste from the saline. I waited about 20 or 30 minutes and she came with the next drug....the Vinblastine...it was uneventful too....by this time I was eating my lunch and it was pretty good...I had a chicken salad with ranch dressing, a roll and a little cup of strawberry icecream so I was happy!
I looked around and didn't recognize anyone from the last time....just other poor Cancer victims, some bent over and really sick, some seeming to be ok....just a mix, I guess! No one was thrilled to be there, that you could tell!!
Then the nurse came with the Bleomycin and I didn't really feel anything with that either...about twenty minutes later came the bad one...the DACARBAZINE!!! Immediately my stomach started hurting but didn't seem to hurt as much as the last time!But, my jawline started going numb...just tingling here and there..nothing major, just annoying!
When this finally got done after 40 minutes of dripping..the nurse came and took out the needle from my port and held pressure on it really good for a couple of minutes and sent me on my way...I was so ready to go home!! I had been there about 6 hours and was so tired out!!!
On the way home, the face numbness got really worse!!! It was spreading all over my face and was just horrible!! It felt like tiny bugs crawling all over my face...I couldn't stand it!!! It was still doing it about six hours later! I called my doctor and they had him call me...he called me right back and I told him what was going on with my face. He said he had never heard of that with any patients but that chemo did weird things sometimes! He said if it got worse to go to the ER and he would call me in the morning and have me come in if it hadn't gone away!!
I was up most of the night, it just would not stop and was driving me nuts!! I could not stand it...finally it stopped about 4:00am!!! Over 13 hours of a face-numbing nightmare!!! I was so relieved it was gone and has not come back so I didn't have to go in. I had a lot of people praying last night and I know the Lord took care of me!! I pray that never happens again, it was so scary and so annoying!!
So that was my adventures in chemo land story....soon we will be talking hair loss...my hair is slowly coming out, actually, pretty badly today!! Every time I run my fingers through my hair, about 15 come out in my hands so it's not gonna be long!!
My sweet husband came up to me with a pen and drew a little sweet smiley face on my port bandage!! That just was so sweet to me and so I had him take a pic so I could share it with you guys.
Will be back soon with more info...thanks for reading!!!
Tuesday, April 13, 2010
The First 14 Days Of Chemo
I kinda wanted to go over my first days after my first chemo so if anyone is getting ready to go through this or just wants to know what it feels like, can kinda get an idea of what I went through.
The day of chemo, I didn't really feel much other than a stomach ache. I got home and immediately took my Kytril to be sure I didn't start feeling nauseated. The stomach pain felt like your stomach hurts when you have the stomach flu. I never did throw up or feel really nauseated...it was only the stomach pain. That night, I was so restless and could not sleep!! My legs twitched and felt aggravated. I felt like I wanted to get up and walk around..just couldn't be still! I don't think I slept but two hours that night! I guess it was all the steriods!
The next day was nothing really more...still stomach pain. No real nausea except here and there. I would feel a twinge of nausea but it would go away. I took my nausea meds around the clock on this day as well, just to be sure.
Friday, was about the same...I pretty much felt okay except my stomach still hurt and now I was a little constipated. I felt a little tired but pretty much okay other than that.
Saturday, I woke up feeling a little tired but decided that I could work. After work, I went to go do something in the kitchen, and something came over me...I don't even know how to describe how bad it was!! I was so weak and felt so weird!! I was dizzy, light-headed and nauseated! I could barely stand. I have never felt so bad in my life! Normally when I feel bad or am sick, I can push through and keep going to a certain extent but with this, it was impossible! I could not do anything!! If I tried, I would feel like I was going to pass out! I got so upset and worried, thinking if this is how every day becomes, I can't do it! I ended up just having to take my nausea meds and going to bed.
I woke up Sunday (Easter morning). I still felt a little weird but not as bad. I was nauseated so I took my nausea meds and then was mostly okay through the day. I still felt kinda weak but not nearly like I did the day before!
The following week was a chemo free week so day-by-day, things started to improve!! I started feeling more energetic and was able to stop taking nausea meds for the most part. One night, I did have some nerve stuff going on in my feet and hands. Two of my toes on both feet kept tingling and so did my fingers. This caused me to not be able to rest well because my legs were also restless.
Towards the end of the week, the constipation turned to diarrhea and the stomach pain got worse. My family doc prescibed me Prilosec and the stomach pain started getting better. I quit feeling nauseated at all and have not had to take meds. The diarrhea calmed down over the weekend and things slowed back down.
Over the weekend, my scalp started feeling really irritated. It burned some and itched lots. Last night, it really bothered me! I couldn't sleep because of it. My scalp felt like I had left it in a tight pony tail all day and just taken it down..ladies you know that feeling! I guess my hair is about to go because from what I have read, this is the first sign.
Other than that, the two weeks haven't been too bad...I am not naive to think it will always go this way! But, I am so glad that it wasn't any worse!
The day of chemo, I didn't really feel much other than a stomach ache. I got home and immediately took my Kytril to be sure I didn't start feeling nauseated. The stomach pain felt like your stomach hurts when you have the stomach flu. I never did throw up or feel really nauseated...it was only the stomach pain. That night, I was so restless and could not sleep!! My legs twitched and felt aggravated. I felt like I wanted to get up and walk around..just couldn't be still! I don't think I slept but two hours that night! I guess it was all the steriods!
The next day was nothing really more...still stomach pain. No real nausea except here and there. I would feel a twinge of nausea but it would go away. I took my nausea meds around the clock on this day as well, just to be sure.
Friday, was about the same...I pretty much felt okay except my stomach still hurt and now I was a little constipated. I felt a little tired but pretty much okay other than that.
Saturday, I woke up feeling a little tired but decided that I could work. After work, I went to go do something in the kitchen, and something came over me...I don't even know how to describe how bad it was!! I was so weak and felt so weird!! I was dizzy, light-headed and nauseated! I could barely stand. I have never felt so bad in my life! Normally when I feel bad or am sick, I can push through and keep going to a certain extent but with this, it was impossible! I could not do anything!! If I tried, I would feel like I was going to pass out! I got so upset and worried, thinking if this is how every day becomes, I can't do it! I ended up just having to take my nausea meds and going to bed.
I woke up Sunday (Easter morning). I still felt a little weird but not as bad. I was nauseated so I took my nausea meds and then was mostly okay through the day. I still felt kinda weak but not nearly like I did the day before!
The following week was a chemo free week so day-by-day, things started to improve!! I started feeling more energetic and was able to stop taking nausea meds for the most part. One night, I did have some nerve stuff going on in my feet and hands. Two of my toes on both feet kept tingling and so did my fingers. This caused me to not be able to rest well because my legs were also restless.
Towards the end of the week, the constipation turned to diarrhea and the stomach pain got worse. My family doc prescibed me Prilosec and the stomach pain started getting better. I quit feeling nauseated at all and have not had to take meds. The diarrhea calmed down over the weekend and things slowed back down.
Over the weekend, my scalp started feeling really irritated. It burned some and itched lots. Last night, it really bothered me! I couldn't sleep because of it. My scalp felt like I had left it in a tight pony tail all day and just taken it down..ladies you know that feeling! I guess my hair is about to go because from what I have read, this is the first sign.
Other than that, the two weeks haven't been too bad...I am not naive to think it will always go this way! But, I am so glad that it wasn't any worse!
Monday, April 12, 2010
The First Chemo Infusion
I had my first chemo infusion on Wednesday, March 31st...two days after my 35th birthday...could have been worse and been on my birthday! I'm not quite sure what I thought would happen...instantaneous combustion?? Instant sickness?? I don't know, but it wasn't quite what I was expecting....I was so nervous that morning and ended up crying the whole way to the office! Don't feel sorry for me though, I quickly got it together and was ready to face whatever happened!
My husband and I arrived for the appointment on time at 9:45am. We had a bit of a wait and then were called back to an exam room. I had my blood pressure taken and it was a tad high..the nurse asked was I nervous and I said, "Yes!" She took my temp and said it was normal and my pulse and Oxygen levels were all good. She left and we waited for awhile.
I soon realized that in my nervousness, I had forgotten to eat that morning and was feeling kinda sick to my stomach! My husband was worried and said I needed to let them know I hadn't eaten. I didn't want to tell them but he said he would if I didn't cause it could make me really sick without eating so he went and told the nurse and she got me some Graham Crackers and a Sprite. I had plenty of time to eat as we waited for the doctor.
The doctor came in and gave me my latest test results and once again went over the chemo side effects and then I had to sign a release that I understood the risks of chemo and all....totally started getting a little scared then!
They took me to the infusion room. Now, it was a nice enough room but there was an air of ...I don't know..not totally sadness or despair but something hung heavy in the air. I had to stand there for a few minutes because there was nowhere for me to be...standing room only! Sad but true!! While we waited there, the chemo victims kinda all shyly looked at me here and there as if they pitied me being the newest victim. Soon, a chair became open and they got me seated. I was reclined back with my feet up and the nurse asked me did I want a blanket..I wasn't cold.
The first thing they did was to confirm my name and birthdate, which over the course of the day, I ended up doing countless times. She brought what looked like a surgical kit over and unwrapped it. It had gloves and gauze and alcohol wipes and other things that she began to lay out on the table.
She asked did I want the numbing spray. She said, "I'm gonna warn ya, most patients don't even bother with it! It feels really cold and they don't like it!" I told her for this first time I wanted the numbing spray because I Was still a little sore from the port surgery. So, she told me to turn my head and sprayed my port down! Let me tell ya, it was a bad feeling for a bit! It was terribly cold and burny but then all was good.
The nurse began to prepare to access my port. She swabbed and swabbed and swabbed me down with alcohol-smelling stuff that made me sick to my stomach to smell. She then told me that every time that they access my port, either by inserting the needle or taking it out, that I will have to take a deep breath and hold it. I didn't feel a thing when she put it in...thank you numbing spray! Maybe you were worth it!
Now this might sound weird but I was getting nauseated smelling the alcohol and the tape thing that they put over the needle...it was just two very strong smells that were not agreeing with me at all!
She then started a drip of just saline...she didn't tell me what it was, I had to read it myself. Then she handed me two Tylenol pills and had me swallow them. Then I had two other drugs through IV..she didn't tell me what they were and right now I can't even recall them but they were for Nausea and a steriod. I would say it was about thirty minutes or so before anything else happened.
During this time, I got to looking around the room. Beside me there were two hats hanging up...they had been laid there, I guess for the owners to find. I don't know why, but this just really struck me and I couldn't seem to take my eyes off of them. My thoughts went to the owners and I just kept wondering how long those hats had been there and who had left them behind....had they just forgotten to get them....or maybe never made it back?? Ok, that is getting sad to think about but just wanted to share what was running through my mind.
Beside me, was the sweetest little old couple. The man was in the chemo chair and his wife sat right by his side. They were older and you could tell they had been together for a long, long time! She just sat there, ready to spring to action if he made the slightest movement or needed anything! It was a sweet site to see!!
About this time, the nurse came back and asked me for the millionth time what my name was and birthdate..I was glad they were being thorough though! I sure wouldn't want to be given the wrong chemo drugs! They finally had the big bag of chemo drugs...they opened them up and they had forgotten my Bleomycin test dose. So they had to call the pharmacy to bring that up. So, there was a little more wait time. I sat and blindly watched the TV and couldn't tell you what was on to save my life!
Finally, they brought the test dose up and gave it to me to see if I had a reaction. After that, they flushed my port with saline and I swear, I started tasting saltiness in my mouth! When I didn't have a reaction after awhile, she pulled out this big turkey baster looking needle full of red stuff...the Adriomycin...the "Red Devil", as it is often called. This bad boy puts a real punch to the Cancer....awesome stuff!!
The side effects are nausea, alopecia (hair loss), and neutropenia (depletion of white blood cells). It can also cause heart problems, such as arrhythmias, in some patients.
They then flushed me with saline again and I had to wait for awhile...
About this time, I started to feel the need to go to the bathroom...the nurse warned me that my urine would probably be pink. The kind lady from next door showed my husband how to unplug me and take my IV pole with me to the bathroom. She was so sweet!
Then when I got back, the nurse came with a slightly smaller turkey baster and this was the Vinblastine...it was clear. She pushed that through my IV while timing it just like with the first drug. With both the first drugs, I didn't feel anything really. The main thing I was feeling at this point was a burning warmth through my chest and neck from the steriods, I later found out. The side effects of Vinblastine are: neutropenia, ulcers, blisters, and nausea.
About this time they started bringing trays of food around from the cafeteria..I didn't get one but I thought maybe they didn't want me to eat on my first time....I soon heard the sweet little lady beside me telling the nurse that I didn't get a tray. They quickly had me order what I wanted and soon had my food.....
Now, for some reason, I have always liked hospital food! Call me crazy! It's not that the food is really all that good but there's something about the little individual covered bowls and little butters and jellies...I don't know, I have just always liked it! I was pretty starving by this point and had some baked chicken and steamed carrots, a roll, a salad, potatoes and a little chocolate cake. It was pretty good!
About this time, they came to check my vitals and make sure I was still feeling okay. She then got out a smaller needle full of another clear liquid called Bleomycin, the one I had the test dose for. She pushed it through slowly while timing her watch and it didn't cause me to feel anything really either but by this point, I kinda had a bad taste in my mouth! Bleomycin is pretty hard on the body and can cause: fever, rash, alopecia, and Raynaud’s phenomenon (a discoloration of the fingers and/or toes). However, the most serious side effect is the occurrence of pulmonary fibrosis, which impairs the lungs.
About this time, my husband had to go get our boys off the bus. He didn't want to leave me alone but we had no choice. I had now been there almost five hours!
While he was gone, the little lady next store stopped by and asked did I need anything. She brought me a drink and some crackers. I never did catch her name but she looks like a Mary so until I found out otherwise, I will just refer to her as Mary.
Each time a chemo drug was given, the nurse would clean the end of the IV tube with alcohol and flush it with saline. You wouldn't think such a benign thing would make someone sick but the smell and taste of it was awful!
Finally, we were down to the last drug. This is the Dacarbazine and it had to be given by drip over an hour period. So she started that to dripping. By this time, I was so tired of sitting in that chair...I felt like a prisoner!! What was once a comfy, soft and relaxing chair, soon felt like my prison! I kept looking at the bag to see how much I had left and it was dripping ever so slow and seemed like it would take a lifetime to finish and empty!!
Soon, the pain started in my stomach. It hurt all across the top of my abdomen. It was almost like a cramp without needing to go to the bathroom. I told the nurse about it and she kept checking on me...the pain stayed and stayed...
Finally, the last of the drug had dripped in the IV and I was done!! They came and checked my vitals and said I was finished!! I was so glad!!
She carefully removed the tape over my port and had me hold my breath while she removed the needle. Once again, no pain. She put a lot of pressure on it to stop the bleeding and bandaged it up.
She gave me two prescriptions for nausea...one was called Kytril and one Phenergan. She told me to go ahead and take the Kytril when I got home and for the first few days to prevent nausea.
So, I was on my way...pumped full of poisons and not really sure what to think...
My husband and I arrived for the appointment on time at 9:45am. We had a bit of a wait and then were called back to an exam room. I had my blood pressure taken and it was a tad high..the nurse asked was I nervous and I said, "Yes!" She took my temp and said it was normal and my pulse and Oxygen levels were all good. She left and we waited for awhile.
I soon realized that in my nervousness, I had forgotten to eat that morning and was feeling kinda sick to my stomach! My husband was worried and said I needed to let them know I hadn't eaten. I didn't want to tell them but he said he would if I didn't cause it could make me really sick without eating so he went and told the nurse and she got me some Graham Crackers and a Sprite. I had plenty of time to eat as we waited for the doctor.
The doctor came in and gave me my latest test results and once again went over the chemo side effects and then I had to sign a release that I understood the risks of chemo and all....totally started getting a little scared then!
They took me to the infusion room. Now, it was a nice enough room but there was an air of ...I don't know..not totally sadness or despair but something hung heavy in the air. I had to stand there for a few minutes because there was nowhere for me to be...standing room only! Sad but true!! While we waited there, the chemo victims kinda all shyly looked at me here and there as if they pitied me being the newest victim. Soon, a chair became open and they got me seated. I was reclined back with my feet up and the nurse asked me did I want a blanket..I wasn't cold.
The first thing they did was to confirm my name and birthdate, which over the course of the day, I ended up doing countless times. She brought what looked like a surgical kit over and unwrapped it. It had gloves and gauze and alcohol wipes and other things that she began to lay out on the table.
She asked did I want the numbing spray. She said, "I'm gonna warn ya, most patients don't even bother with it! It feels really cold and they don't like it!" I told her for this first time I wanted the numbing spray because I Was still a little sore from the port surgery. So, she told me to turn my head and sprayed my port down! Let me tell ya, it was a bad feeling for a bit! It was terribly cold and burny but then all was good.
The nurse began to prepare to access my port. She swabbed and swabbed and swabbed me down with alcohol-smelling stuff that made me sick to my stomach to smell. She then told me that every time that they access my port, either by inserting the needle or taking it out, that I will have to take a deep breath and hold it. I didn't feel a thing when she put it in...thank you numbing spray! Maybe you were worth it!
Now this might sound weird but I was getting nauseated smelling the alcohol and the tape thing that they put over the needle...it was just two very strong smells that were not agreeing with me at all!
She then started a drip of just saline...she didn't tell me what it was, I had to read it myself. Then she handed me two Tylenol pills and had me swallow them. Then I had two other drugs through IV..she didn't tell me what they were and right now I can't even recall them but they were for Nausea and a steriod. I would say it was about thirty minutes or so before anything else happened.
During this time, I got to looking around the room. Beside me there were two hats hanging up...they had been laid there, I guess for the owners to find. I don't know why, but this just really struck me and I couldn't seem to take my eyes off of them. My thoughts went to the owners and I just kept wondering how long those hats had been there and who had left them behind....had they just forgotten to get them....or maybe never made it back?? Ok, that is getting sad to think about but just wanted to share what was running through my mind.
Beside me, was the sweetest little old couple. The man was in the chemo chair and his wife sat right by his side. They were older and you could tell they had been together for a long, long time! She just sat there, ready to spring to action if he made the slightest movement or needed anything! It was a sweet site to see!!
About this time, the nurse came back and asked me for the millionth time what my name was and birthdate..I was glad they were being thorough though! I sure wouldn't want to be given the wrong chemo drugs! They finally had the big bag of chemo drugs...they opened them up and they had forgotten my Bleomycin test dose. So they had to call the pharmacy to bring that up. So, there was a little more wait time. I sat and blindly watched the TV and couldn't tell you what was on to save my life!
Finally, they brought the test dose up and gave it to me to see if I had a reaction. After that, they flushed my port with saline and I swear, I started tasting saltiness in my mouth! When I didn't have a reaction after awhile, she pulled out this big turkey baster looking needle full of red stuff...the Adriomycin...the "Red Devil", as it is often called. This bad boy puts a real punch to the Cancer....awesome stuff!!
The side effects are nausea, alopecia (hair loss), and neutropenia (depletion of white blood cells). It can also cause heart problems, such as arrhythmias, in some patients.
They then flushed me with saline again and I had to wait for awhile...
About this time, I started to feel the need to go to the bathroom...the nurse warned me that my urine would probably be pink. The kind lady from next door showed my husband how to unplug me and take my IV pole with me to the bathroom. She was so sweet!
Then when I got back, the nurse came with a slightly smaller turkey baster and this was the Vinblastine...it was clear. She pushed that through my IV while timing it just like with the first drug. With both the first drugs, I didn't feel anything really. The main thing I was feeling at this point was a burning warmth through my chest and neck from the steriods, I later found out. The side effects of Vinblastine are: neutropenia, ulcers, blisters, and nausea.
About this time they started bringing trays of food around from the cafeteria..I didn't get one but I thought maybe they didn't want me to eat on my first time....I soon heard the sweet little lady beside me telling the nurse that I didn't get a tray. They quickly had me order what I wanted and soon had my food.....
Now, for some reason, I have always liked hospital food! Call me crazy! It's not that the food is really all that good but there's something about the little individual covered bowls and little butters and jellies...I don't know, I have just always liked it! I was pretty starving by this point and had some baked chicken and steamed carrots, a roll, a salad, potatoes and a little chocolate cake. It was pretty good!
About this time, they came to check my vitals and make sure I was still feeling okay. She then got out a smaller needle full of another clear liquid called Bleomycin, the one I had the test dose for. She pushed it through slowly while timing her watch and it didn't cause me to feel anything really either but by this point, I kinda had a bad taste in my mouth! Bleomycin is pretty hard on the body and can cause: fever, rash, alopecia, and Raynaud’s phenomenon (a discoloration of the fingers and/or toes). However, the most serious side effect is the occurrence of pulmonary fibrosis, which impairs the lungs.
About this time, my husband had to go get our boys off the bus. He didn't want to leave me alone but we had no choice. I had now been there almost five hours!
While he was gone, the little lady next store stopped by and asked did I need anything. She brought me a drink and some crackers. I never did catch her name but she looks like a Mary so until I found out otherwise, I will just refer to her as Mary.
Each time a chemo drug was given, the nurse would clean the end of the IV tube with alcohol and flush it with saline. You wouldn't think such a benign thing would make someone sick but the smell and taste of it was awful!
Finally, we were down to the last drug. This is the Dacarbazine and it had to be given by drip over an hour period. So she started that to dripping. By this time, I was so tired of sitting in that chair...I felt like a prisoner!! What was once a comfy, soft and relaxing chair, soon felt like my prison! I kept looking at the bag to see how much I had left and it was dripping ever so slow and seemed like it would take a lifetime to finish and empty!!
Soon, the pain started in my stomach. It hurt all across the top of my abdomen. It was almost like a cramp without needing to go to the bathroom. I told the nurse about it and she kept checking on me...the pain stayed and stayed...
Finally, the last of the drug had dripped in the IV and I was done!! They came and checked my vitals and said I was finished!! I was so glad!!
She carefully removed the tape over my port and had me hold my breath while she removed the needle. Once again, no pain. She put a lot of pressure on it to stop the bleeding and bandaged it up.
She gave me two prescriptions for nausea...one was called Kytril and one Phenergan. She told me to go ahead and take the Kytril when I got home and for the first few days to prevent nausea.
So, I was on my way...pumped full of poisons and not really sure what to think...
Wednesday, April 7, 2010
The Chemo Port Placement Surgery
Just as a warning: If you are reading this and about to go through this procedure, this is not meant in any way to frighten you! My experience may be nothing like your's! I just wish someone had informed me of the possibility of it being like that! So, let me explain.....
My surgery was scheduled for Wednesday, March 24th. This was a special day for me because it would have been my Mom's birthday. My wonderful Mom passed away in April of 2005 very unexpectedly and I still miss her so much!!!
That morning, we took the boys to school and headed for the hospital to be there at 8:00. I was really nervous and kinda sick to my stomach! I never do well in the mornings..just not a morning person! I often feel nauseaus! Anyway, we got there and they shortly took me back to a room and left my husband in the waiting room. They said he could come back soon...I didn't like that too much but I didn't make a fuss!
I went back into my room and they had me strip down and get the lovely hospital gown on...someone seriously needs to redesign those things!! Once I was dressed and in my hard bed...another thing that needs redoing....the nurse came in to check all my vitals and put my IV in. Nurses always have a time with me and needles and IV's because my veins like to roll and hide and since they were dehydrated, they especially did this! She stuck me the first time and it didn't work...I didn't even bleed when she pulled it out! Then she tried again on my other arm, this time in the hand...she was so sure she had it and then the IV would not drip! So, she said she would try one more time and if she didn't get it, she would send someone else in. I prayed and prayed and YES, she got it in...it was a little positional but she thought it would be fine since I wouldn't be under too long.
She got me all settled in and then went and got one of those wonderful heated blankets and put on me and went to find my husband....boy was I glad to see him!!! He always makes me feel safe when he is there..and just OK!!
We watched TV for awhile and talked and joked to pass the time....it seemed like a good while and they would check on me here and there. Soon, the anesthesiologist came in...He explained what they were gonna do and that I would be kinda out but not totally. He said if they needed to, he would be there to put me further under. He asked did I want something to relax me and I said a big "YES!!" So, the nurse came in and gave me an injection in the IV.
Before I knew it, they were coming to get me and wheeling me back down many halls into this really cold room! They had me scoot over on the operation table and then things kinda get fuzzy cause I was in and out....I remember lots of talking. I remember them swabbing my chest down and the liquid was cold and ran all down the back of my neck and into my hair! That was not a great feeling but I was out of it!!
I remember at some point them putting a heavy blue drape across me...the nurse said it was to protect me from the XRays....I hadn't a clue what she was really talking about at the time. Next thing I knew a nurse was buttoning my gown at my arms back up..."She said she needed to fix my party dress." I remember giggling. Then I was being scooted back on to a bed and being wheeled back down those long halls and back into my room.
I was pretty drowsy but not too out of it at this point. I was back in the room and soon my husband was there and all felt right in the world again. He had said I was in the OR almost an hour but of course to me, it had only seemed like minutes!
The pain wasn't bad at all at this point but I could feel something starting so I asked for pain medication and they soon brought me a shot of Demerol and Phenergan. The nurse asked did I want something to eat and drink and brought me a Sprite and a warm muffin! Best tasting muffin ever, especially when I was starving!!
About this time, I got to looking at my surgery area. There wasn't much to see, just two small stera strips. I was given lots of instructions like not taking a bath for 24 hours and to keep the strips on for ten days. Then they had my husband sign all the papers and wheeled me out to our van to go home. In total, we were there about 4 hours.
That afternoon was pretty much okay but then by that night I was in agony!! This surgery was so much more painful than the surgery to remove my lymph node! I just could not get relief. The only way I could bear it was to lie flat down and the bed and not move! When I did have to get up to go to the bathroom, pulling myself to a sitting position was so very painful!!
I had tons of swelling and bruising...it was like that for a couple of days and then Saturday seemed a little better. Then that afternoon, I started hurting when I took a big breath...it was not fun! I called the surgeon on call for the practice (he was not one I had ever dealt with). He never bothered to call me back! That really upset me but I didn't bother with it.
Finally, by Monday it started to ease!!! It has now been two weeks and for the most part I don't even know it's there! I can feel the port and tube some when I run my hand over it and I have about a one inch scar that is still healing up nicely! I am so thankful for the port because I have heard the alternative is not good...still, I wish I had known it could be so badly painful...maybe I would have been better prepared!
My surgery was scheduled for Wednesday, March 24th. This was a special day for me because it would have been my Mom's birthday. My wonderful Mom passed away in April of 2005 very unexpectedly and I still miss her so much!!!
That morning, we took the boys to school and headed for the hospital to be there at 8:00. I was really nervous and kinda sick to my stomach! I never do well in the mornings..just not a morning person! I often feel nauseaus! Anyway, we got there and they shortly took me back to a room and left my husband in the waiting room. They said he could come back soon...I didn't like that too much but I didn't make a fuss!
I went back into my room and they had me strip down and get the lovely hospital gown on...someone seriously needs to redesign those things!! Once I was dressed and in my hard bed...another thing that needs redoing....the nurse came in to check all my vitals and put my IV in. Nurses always have a time with me and needles and IV's because my veins like to roll and hide and since they were dehydrated, they especially did this! She stuck me the first time and it didn't work...I didn't even bleed when she pulled it out! Then she tried again on my other arm, this time in the hand...she was so sure she had it and then the IV would not drip! So, she said she would try one more time and if she didn't get it, she would send someone else in. I prayed and prayed and YES, she got it in...it was a little positional but she thought it would be fine since I wouldn't be under too long.
She got me all settled in and then went and got one of those wonderful heated blankets and put on me and went to find my husband....boy was I glad to see him!!! He always makes me feel safe when he is there..and just OK!!
We watched TV for awhile and talked and joked to pass the time....it seemed like a good while and they would check on me here and there. Soon, the anesthesiologist came in...He explained what they were gonna do and that I would be kinda out but not totally. He said if they needed to, he would be there to put me further under. He asked did I want something to relax me and I said a big "YES!!" So, the nurse came in and gave me an injection in the IV.
Before I knew it, they were coming to get me and wheeling me back down many halls into this really cold room! They had me scoot over on the operation table and then things kinda get fuzzy cause I was in and out....I remember lots of talking. I remember them swabbing my chest down and the liquid was cold and ran all down the back of my neck and into my hair! That was not a great feeling but I was out of it!!
I remember at some point them putting a heavy blue drape across me...the nurse said it was to protect me from the XRays....I hadn't a clue what she was really talking about at the time. Next thing I knew a nurse was buttoning my gown at my arms back up..."She said she needed to fix my party dress." I remember giggling. Then I was being scooted back on to a bed and being wheeled back down those long halls and back into my room.
I was pretty drowsy but not too out of it at this point. I was back in the room and soon my husband was there and all felt right in the world again. He had said I was in the OR almost an hour but of course to me, it had only seemed like minutes!
The pain wasn't bad at all at this point but I could feel something starting so I asked for pain medication and they soon brought me a shot of Demerol and Phenergan. The nurse asked did I want something to eat and drink and brought me a Sprite and a warm muffin! Best tasting muffin ever, especially when I was starving!!
About this time, I got to looking at my surgery area. There wasn't much to see, just two small stera strips. I was given lots of instructions like not taking a bath for 24 hours and to keep the strips on for ten days. Then they had my husband sign all the papers and wheeled me out to our van to go home. In total, we were there about 4 hours.
That afternoon was pretty much okay but then by that night I was in agony!! This surgery was so much more painful than the surgery to remove my lymph node! I just could not get relief. The only way I could bear it was to lie flat down and the bed and not move! When I did have to get up to go to the bathroom, pulling myself to a sitting position was so very painful!!
I had tons of swelling and bruising...it was like that for a couple of days and then Saturday seemed a little better. Then that afternoon, I started hurting when I took a big breath...it was not fun! I called the surgeon on call for the practice (he was not one I had ever dealt with). He never bothered to call me back! That really upset me but I didn't bother with it.
Finally, by Monday it started to ease!!! It has now been two weeks and for the most part I don't even know it's there! I can feel the port and tube some when I run my hand over it and I have about a one inch scar that is still healing up nicely! I am so thankful for the port because I have heard the alternative is not good...still, I wish I had known it could be so badly painful...maybe I would have been better prepared!
The beginning of a Journey
A journey always begins with one step..mine wasn't quite a step but a leap! My world was completely normal until February 4th, 2010, when all at once my world took a dramatic change!
I had just taken a shower and found a large growth or knot in my left groin! It totally freaked me out! I told my husband and he felt it and we were both scared! It seemed to be about the size of 3 inches long. It was kind of bean shaped and firm! My first thought was, "Oh no! I have a tumor!!!" I was scared to death! It was snowing that night but I could not wait until morning to see what this thing was so we all piled into our van and headed off for the ER.
The ER doctor didn't do much of anything to be honest. I guess I had hoped that they would run some type of scan or test and be able to tell me exactly what this thing was and wasn't..that didn't happen. The doctor brought in a female nurse because of the area that this thing was in. He felt it and said that he thought it was a swollen lymph node. He asked me had I had any infections lately and I told him no, that I had been fine. He asked about female infections and again I told him no. He said that most of the time these things are caused by infection but sometimes need to be biopsied. Well that didn't help my already frazzled nerves at all!! The doctor put me on 1,000mg a day of antibiotics and said it should start to go down after about five days and that if it didn't, that I would need to see a surgeon.
So, the waiting game started! I waited the five days and nothing happened. I made an appointment to see the surgeon for February 10th. When I went to see the surgeon, he again felt it...said most of the time it can take ten days on antibiotics for the node to go down. He checked to see if it was a hernia but wasn't sure on it so he wanted to send me for a CT Scan to rule out hernia and make sure it was a node. That was scheduled for the following day. Once again, it was another waiting game...waiting on the results of the CT scan.
I went back to the surgeon on February 17th and he confirmed that the CT results proved it was a node and that there were at least four more in my abdomen so he wanted us to go into surgery and remove the node for biopsy since it was so large. That surgery was scheduled for the next day on Thursday, February 18th. Once I had the surgery, the surgeon let me know that it would be a week before we would have the Pathologist report...so once again, MORE WAITING!!
I went back to my surgeon on Friday, February 26th! I will never forget those words that he told me. He had asked me how I was doing and I had told him about the same and he said, "Well, it was Lymphoma. I am gonna send you to an Oncologist to see what options you have as far as treatment."
I don't think it really registered at that point! I was in shock and couldn't even remember what to ask him!! I didn't even ask him what kind of Lymphoma...just blindly nodded as he told me I had Cancer! I think when I walked out of that office, it struck me what he had actually told me and it slowly began to sink in.
My first Oncologist appointment was not until March 16th so once again there was going to be more waiting!! I could hardly stand this waiting any longer! It was wearing me down! I knew I had Cancer now! I wanted to know what kind and what we were gonna have to do to kill it!!
Before my first Oncologist appointment, I had a surgeon's appointment on March 12th. This time, I had enough sense to ask what kind of Cancer I had. It turns out it was Hodgkins Lymphoma. So, at least now it had a complete name and I knew more of what I was dealing with!
My Oncologist appointment date finally came and I was so relieved to finally be there!! The doctor was very kind as he spoke to me and told me that he thought I would need six months of chemo. He told me about the risks and also told me that he thought we had a good chance of a cure! He did say though, that chemo is never 100%! He wanted to check with the Radiation doctor to be sure he agreed that chemo would be the best option. He said that if he agreed, that we would get the surgery set up to place my chemo port and do some testing and hopefully by the following week, we would start chemo! Finally, something was happening but still some more waiting to go!
That Thursday, two days later, the Oncologist nurse called me and let me know that they had decided to continue on with the chemo plan and putting the port in. The problem was, my surgeon was out of town until April 2nd and she wanted to know if I wanted to wait on him to return or did I want them to get someone else. Well, I am sure by now you can imagine what I chose! I asked them to get someone asap to put this thing in!!!
I got a call that next day that they had scheduled for my surgeon's partner to put the port in and that it would be scheduled for the following Wednesday on March 24th. (This would have been my Mom's birthday) I was also scheduled for that Monday, March 22 to have a Pulmonary Function test and Echocardiogram because the chemo can damage both the heart and lungs, they wanted to be sure both were healthy. They also scheduled me for that following Tuesday March 23rd to have a CT scan of my upper body.
Monday came and I went in for my Pulmonary function test and Echo. Both went pretty quickly and were easy enough. That same day I went in for my preop for the Chemo Port placement. They made it seem like not a big deal at all...quick and not much pain! We will talk more on that next as it deserves it's on post!
That next day, I went in for my CT scan and it was over really quick! I was glad for that as the first one I had involved Barium and made me really sick! This one was much easier!! Then it was more waiting to hear back on when this all would start. I was honestly so ready to start chemo and get it going so I could kick this thing and get on with my life!! It just seemed like it was never gonna happen!! I went home that day, ready for my surgery the next day.....
I had just taken a shower and found a large growth or knot in my left groin! It totally freaked me out! I told my husband and he felt it and we were both scared! It seemed to be about the size of 3 inches long. It was kind of bean shaped and firm! My first thought was, "Oh no! I have a tumor!!!" I was scared to death! It was snowing that night but I could not wait until morning to see what this thing was so we all piled into our van and headed off for the ER.
The ER doctor didn't do much of anything to be honest. I guess I had hoped that they would run some type of scan or test and be able to tell me exactly what this thing was and wasn't..that didn't happen. The doctor brought in a female nurse because of the area that this thing was in. He felt it and said that he thought it was a swollen lymph node. He asked me had I had any infections lately and I told him no, that I had been fine. He asked about female infections and again I told him no. He said that most of the time these things are caused by infection but sometimes need to be biopsied. Well that didn't help my already frazzled nerves at all!! The doctor put me on 1,000mg a day of antibiotics and said it should start to go down after about five days and that if it didn't, that I would need to see a surgeon.
So, the waiting game started! I waited the five days and nothing happened. I made an appointment to see the surgeon for February 10th. When I went to see the surgeon, he again felt it...said most of the time it can take ten days on antibiotics for the node to go down. He checked to see if it was a hernia but wasn't sure on it so he wanted to send me for a CT Scan to rule out hernia and make sure it was a node. That was scheduled for the following day. Once again, it was another waiting game...waiting on the results of the CT scan.
I went back to the surgeon on February 17th and he confirmed that the CT results proved it was a node and that there were at least four more in my abdomen so he wanted us to go into surgery and remove the node for biopsy since it was so large. That surgery was scheduled for the next day on Thursday, February 18th. Once I had the surgery, the surgeon let me know that it would be a week before we would have the Pathologist report...so once again, MORE WAITING!!
I went back to my surgeon on Friday, February 26th! I will never forget those words that he told me. He had asked me how I was doing and I had told him about the same and he said, "Well, it was Lymphoma. I am gonna send you to an Oncologist to see what options you have as far as treatment."
I don't think it really registered at that point! I was in shock and couldn't even remember what to ask him!! I didn't even ask him what kind of Lymphoma...just blindly nodded as he told me I had Cancer! I think when I walked out of that office, it struck me what he had actually told me and it slowly began to sink in.
My first Oncologist appointment was not until March 16th so once again there was going to be more waiting!! I could hardly stand this waiting any longer! It was wearing me down! I knew I had Cancer now! I wanted to know what kind and what we were gonna have to do to kill it!!
Before my first Oncologist appointment, I had a surgeon's appointment on March 12th. This time, I had enough sense to ask what kind of Cancer I had. It turns out it was Hodgkins Lymphoma. So, at least now it had a complete name and I knew more of what I was dealing with!
My Oncologist appointment date finally came and I was so relieved to finally be there!! The doctor was very kind as he spoke to me and told me that he thought I would need six months of chemo. He told me about the risks and also told me that he thought we had a good chance of a cure! He did say though, that chemo is never 100%! He wanted to check with the Radiation doctor to be sure he agreed that chemo would be the best option. He said that if he agreed, that we would get the surgery set up to place my chemo port and do some testing and hopefully by the following week, we would start chemo! Finally, something was happening but still some more waiting to go!
That Thursday, two days later, the Oncologist nurse called me and let me know that they had decided to continue on with the chemo plan and putting the port in. The problem was, my surgeon was out of town until April 2nd and she wanted to know if I wanted to wait on him to return or did I want them to get someone else. Well, I am sure by now you can imagine what I chose! I asked them to get someone asap to put this thing in!!!
I got a call that next day that they had scheduled for my surgeon's partner to put the port in and that it would be scheduled for the following Wednesday on March 24th. (This would have been my Mom's birthday) I was also scheduled for that Monday, March 22 to have a Pulmonary Function test and Echocardiogram because the chemo can damage both the heart and lungs, they wanted to be sure both were healthy. They also scheduled me for that following Tuesday March 23rd to have a CT scan of my upper body.
Monday came and I went in for my Pulmonary function test and Echo. Both went pretty quickly and were easy enough. That same day I went in for my preop for the Chemo Port placement. They made it seem like not a big deal at all...quick and not much pain! We will talk more on that next as it deserves it's on post!
That next day, I went in for my CT scan and it was over really quick! I was glad for that as the first one I had involved Barium and made me really sick! This one was much easier!! Then it was more waiting to hear back on when this all would start. I was honestly so ready to start chemo and get it going so I could kick this thing and get on with my life!! It just seemed like it was never gonna happen!! I went home that day, ready for my surgery the next day.....
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