Hello family, friends and people who randomly stumbled upon this blog.
So many people have asked me what they can do for me and to please let them know what I need. Well, I thought of something that everyone can do to really make a statement.
I am asking everyone to wear PINK on Thursday, March 7 (my first day of chemo). Then, email, text or Facebook pictures of yourself to me (my mom, my husband) in all your pink glory. As I receive them throughout my treatment I will be reminded of all the people out there who support me. We need to make a statement to let people know that more and more women under the age of 40, even 30 are being diagnosed with breast cancer. Together we can spread the word that breast cancer is not JUST an older woman's disease!
UPDATE:
If you are on Facebook you can post your pictures here:
http://www.facebook.com/groups/541817829174840/permalink/541841662505790/?notif_t=like
You may have to copy and paste the link into your browser. Or, you can search Facebook for the group, Wear Pink MARCH 7, 2013.
If you are not on Facebook, please email your pictures to ladybug1919@hotmail.com. With your permission, I may post some of the pictures here on my blog.
Some of you have my mom's or my cell phone number. Feel free to text the pictures. Sorry, but I will not be posting my number here on my blog.
Thanks again for everything!
Thursday, February 28, 2013
The Time Has Come...
Well the countdown to start my treatment starts now. I will be getting radiation to my back TOMORROW at 11:30am. The entire procedure will be less than an hour. Crossing my fingers that I really do get quick relief.
Chemo starts THURSDAY, MARCH 7. That is only one week from today!!!! I am terrified, nervous, anxious, hopeful, angry, sad, and a little relieved. I know this will be tough, but all of the crap I need to go through will help get rid of this cancer causing all my pain and stress.
I am ready to take Hudson for walks again. I miss pushing his stroller. Hell, I miss being able to walk down the hallway at school without wincing in pain or rubbing my back. Slowly, I will regain control of MY body and get back to the person I was. Actually I think I will be a better me. Stronger, happier, prouder and impressed that I fought this cancer and kicked its ass! So often throughout this process I was convinced I would not be able to handle things. The biopsies, the appointments full of medical jargon, the needles, the scans, waiting for results, and the surgeries. My mastectomy was so much more painful than I ever thought possible. Thankfully I am years past that, so in comparison, getting pumped full of toxic drugs that just make me feel sick should be a piece of cake. The hardest part for me will be dealing with the hair loss. I will write more about that soon.
Chemo starts THURSDAY, MARCH 7. That is only one week from today!!!! I am terrified, nervous, anxious, hopeful, angry, sad, and a little relieved. I know this will be tough, but all of the crap I need to go through will help get rid of this cancer causing all my pain and stress.
I am ready to take Hudson for walks again. I miss pushing his stroller. Hell, I miss being able to walk down the hallway at school without wincing in pain or rubbing my back. Slowly, I will regain control of MY body and get back to the person I was. Actually I think I will be a better me. Stronger, happier, prouder and impressed that I fought this cancer and kicked its ass! So often throughout this process I was convinced I would not be able to handle things. The biopsies, the appointments full of medical jargon, the needles, the scans, waiting for results, and the surgeries. My mastectomy was so much more painful than I ever thought possible. Thankfully I am years past that, so in comparison, getting pumped full of toxic drugs that just make me feel sick should be a piece of cake. The hardest part for me will be dealing with the hair loss. I will write more about that soon.
Tuesday, February 26, 2013
Baby Proofing Myself
So last night Hudson was using my implant as a means to support himself while he tried to stand up on the couch. Thank goodness I cannot feel anything in that area because I am sure my skin probably did not enjoy the positions it was being stretched. Later that night I had to make sure I was not lop-sided, haha.
The other day Hudson threw his head in frustration and landed his forehead directly on my port. It was such an unexpected, immediate shooting pain that all I could do was nearly launch him off me. I yelled for Frank to pick him up before I lost it.
Both of these episodes made me realize that my post-mastectomy & chemo-prepared body is not designed for the sporadic movements of a baby. From now on I need to baby proof myself before holding Hud. So far that only consists of laying the couch pillow on my chest for protection. Doesn't make for great interactions with my little man.
I will have to keep experimenting until I figure out the best protection. My implant is going to be with me forever and my port is here to stay for at least a year. I want to be able to play with my little man as soon as my back is feeling better.
The other day Hudson threw his head in frustration and landed his forehead directly on my port. It was such an unexpected, immediate shooting pain that all I could do was nearly launch him off me. I yelled for Frank to pick him up before I lost it.
Both of these episodes made me realize that my post-mastectomy & chemo-prepared body is not designed for the sporadic movements of a baby. From now on I need to baby proof myself before holding Hud. So far that only consists of laying the couch pillow on my chest for protection. Doesn't make for great interactions with my little man.
I will have to keep experimenting until I figure out the best protection. My implant is going to be with me forever and my port is here to stay for at least a year. I want to be able to play with my little man as soon as my back is feeling better.
Monday, February 25, 2013
Numbers
I have always been motivated, aware of and affected by numbers. I still know most of my friend's childhood home phone numbers and addresses. I know all my friends birthdays and anniversaries. I have to set the volume on the TV on an even number, ha. When I work out I set mini goals for myself based on the calories burned or minutes exercised. I love playing timed games so that I can beat my previous scores. I love to-do lists and countdowns. I am so motivated by the ability to physically cross something off.
That being said, numbers are going to surround me throughout this cancer journey. Dates of treatments, number of treatments, white blood count, blood pressure, pulse, my weight (losing or gaining), number of medicines, length of time for each treatment, co-pays, 3rd floor, number of deduction days taken from work and so on.
Later this week I will find out the number of radiation treatments I will need. Anywhere from 1-3 so they can make sure to avoid my spinal cord. The good news, I may feel some immediate relief and within 2-3 days I should be substantially better.
Chemotherapy and other infusions will last for ONE year. The tentative starting date is March 7. (As long as my insurance gets the approval back to them on time, I will be good to go.)
I will be given 4 different drugs through my port in 3 phases.
Phase 1: 2 drugs, every 3 weeks for 4 treatments - the drugs are Adriamycin (this is red and will make my urine red!) & Cytoxan - these are the 2 drugs that will make me the sickest and make my hair fall out. These infusions will take between 3-4 hours. They are given 3 weeks apart so the patients' bodies have more time to recover and their white blood cells can get back up. I was prepared for 6 weeks of these medicines so already the countdown has begun. Only 4 really crappy weekends are in the near future. 8 or so days of fatigue, nausea and whatever else happens.
Phase 2: 2 drugs, every week for 12 weeks - Taxotere & Herceptin - Herceptin is the drug that will attack the HER2 protein that is part of this cancer. Taxotere can cause hair thinning and may slow down the regrowth process, but will not stop it completely. My doctor said the sick factor of this phase is "medium." So, I will not feel nearly as bad as the first 4 treatments, but I will still feel sick.
Phase 3: 1 drug, every 3 weeks for 8 months - Herceptin - a continuation of the drug started in phase 2. Infusion will take about 90 minutes. This drug has little to no side effects. However, there is a slight chance of heart issues so every 3 months I will get another Echo Cardigram (heart ultrasound). "Good news" I can get these infusions on the weekends at a different location so I will not have to miss work!
Realistic Side Effects from the drugs:
I will have free Wi-Fi during chemo so I will try to blog when I am there. At least the first time. If I can steady my hands enough to type.
That being said, numbers are going to surround me throughout this cancer journey. Dates of treatments, number of treatments, white blood count, blood pressure, pulse, my weight (losing or gaining), number of medicines, length of time for each treatment, co-pays, 3rd floor, number of deduction days taken from work and so on.
Later this week I will find out the number of radiation treatments I will need. Anywhere from 1-3 so they can make sure to avoid my spinal cord. The good news, I may feel some immediate relief and within 2-3 days I should be substantially better.
Chemotherapy and other infusions will last for ONE year. The tentative starting date is March 7. (As long as my insurance gets the approval back to them on time, I will be good to go.)
I will be given 4 different drugs through my port in 3 phases.
Phase 1: 2 drugs, every 3 weeks for 4 treatments - the drugs are Adriamycin (this is red and will make my urine red!) & Cytoxan - these are the 2 drugs that will make me the sickest and make my hair fall out. These infusions will take between 3-4 hours. They are given 3 weeks apart so the patients' bodies have more time to recover and their white blood cells can get back up. I was prepared for 6 weeks of these medicines so already the countdown has begun. Only 4 really crappy weekends are in the near future. 8 or so days of fatigue, nausea and whatever else happens.
Phase 2: 2 drugs, every week for 12 weeks - Taxotere & Herceptin - Herceptin is the drug that will attack the HER2 protein that is part of this cancer. Taxotere can cause hair thinning and may slow down the regrowth process, but will not stop it completely. My doctor said the sick factor of this phase is "medium." So, I will not feel nearly as bad as the first 4 treatments, but I will still feel sick.
Phase 3: 1 drug, every 3 weeks for 8 months - Herceptin - a continuation of the drug started in phase 2. Infusion will take about 90 minutes. This drug has little to no side effects. However, there is a slight chance of heart issues so every 3 months I will get another Echo Cardigram (heart ultrasound). "Good news" I can get these infusions on the weekends at a different location so I will not have to miss work!
Realistic Side Effects from the drugs:
- hair loss - this is the hardest part, such a physical sign of cancer
- nausea - but there are drugs to help with that
- low blood counts - there are also meds to help that if needed
- numbness/tingling in hands & feet - temporary
- fingernail changes - black lines that will grow out once treatment is finished
- loss of menstrual cycle - really not a problem for me
- I will be able to get a wig, free of charge!
- No buffets or salad bars due to high amount of germs.
I will have free Wi-Fi during chemo so I will try to blog when I am there. At least the first time. If I can steady my hands enough to type.
Thursday, February 21, 2013
Long day!
So, today was my radiation fitting. So much to say, not sure I have the energy to write it all at the moment.
I made my appointment for 11am to avoid the morning rush hour traffic. Well, the construction on 95 backs up for hours so we had to take a different way. After, Maggie (our Magellan GPS ) led my mom and I through the ghetto of Philadelphia, we safely arrived at our destination. Sort of. After all my visits to Jefferson I still have no clue how to get around all those one-way streets. It is so overwhelming, that my mom and I always default to the Walnut St. Theater parking lot because we can get there and know how to get home. We are willing to pay more for our sanity!
We parked and made it 10 minutes early. Plenty of time to fill out the 4 forms they had for me. I feel like I am being tested. List all the medications you are currently taking. The dosage, the route (this one caught be off guard), and the frequency. List all allergies. Wait...didn't I JUST fill all of these papers out on Monday before having my port put in? And the day I had my PET scan etc? I am baffled that a place as advanced as Jefferson needs its patients to continuously fill out the same information. If nothing has changed then look me up in the damn computer system, have me sign off on it and get on with it! Sorry, had to vent about that. I had writer's cramp and all I could think about was how badly I needed to use the locked bathroom. So strange, they must have been trying to keep the riff-raff from using the public restroom in the basement, so everyone must get the key with the 12 inch long wooden dowel attached just to open the door.
My 11am appointment did not begin until after 11:30 because the consent form I filled out a few weeks ago (so that the process would be speedier today) was the wrong form. So, we had to wait for the doctor to come over and sign a new one. Not before she stopped into the locked bathroom and tripped over her own feet when entering the room, oops!
First task of the day, making my body mold. This is what they will use to hold me in place during the actual radiation treatment. I laid down on a blue, air mattress/beanbag cushion on a table in the middle of the room. Due to the location of my tumor I had to lay my arms above my head so that they will not be in the way of the laser beam. It took 3 people to mold this thing. They can add and remove air with a little machine and when they are happy with things they completely deflate it. All the little balls get really tight together and create a mold around my body. When I got up all I could think of was those plastic sleds you use when you are little.
Next task, MRI. This was TERRIBLE! I have had several MRIs at this point, but for some reason this one really got to me. Maybe because I was told the entire day would only be an hour and a half and then I found out that was how long the MRI would take! My MRI tech, Phil, was very lucky I now take Celexa because I would have had to "shoot" the MRI messenger after all of it. First, the information about my chest port never made it to them even though I called over with it more than 24 hours prior (like I was supposed to). They needed to copy the information, then Phil had to talk to his boss because once you have a port you can only be scanned in certain machines. That took about 20 minutes. I got changed into the world's largest robe and then head back for the test. I was SO cold it was crazy. Shivering with a broken back SUCKS, in case you were wondering. After one of the portions of the test I was seconds away from pressing my call button when Phil gave me an update. I had 3 more contrast-free images to go before getting my IV. I told him I needed the air turned down because it was blowing into my ear and giving me a headache. I also told him to let me know the length of each remaining image so that I could count down. The 15 minute test made me crazy. For those of you who are not lucky enough to have had an MRI the noise is maddening. The earplugs are a joke. Next, came the contrast. Easy, right? WRONG! Phil tried twice and both times my veins had scar tissue in them and he was unable to advance the dye. UGH. (Maybe I will love my port.) Then Jackie came in, she didn't even want to try on my little veins. Then Melissa came in. She is a CAT scan tech. They use jumbo needles so she is good at IVs. Luckily she was able to get it in right away because I was serious when I said 3 strikes and I am done. In the past 4 days I have had 5 IVs stuck into my left arm, ouch! Finished up the scan and was ready for phase three.
Final phase, CAT scan while laying on the newly created body mold. Oh but wait. Cindy came out to tell us that the scanner was in use and we had to wait at least 30 minutes. I was about to LOSE it. I hadn't eaten since breakfast and at this point it is after 3. At least this scan did not require another needle. Around 3:30 they took me back. The whole process was less than 20 minutes and I was ready to run down the hallway to get the hell out of there.
The elevator doors closed at 4pm and we were getting into the car to drive home by 4:10. Stupid 95 traffic got us on the way home too. Again, thank you Celexa. That shit helps me keep my cool, I swear.
I know I am not the only person with cancer. I am not the only person who has to get scanned. I am not the only person to complain about the chaos that can ensue during a day at the hospital. But writing all this down helps me and hopefully all my crazy comments and information helps somebody, or makes somebody laugh.
I made my appointment for 11am to avoid the morning rush hour traffic. Well, the construction on 95 backs up for hours so we had to take a different way. After, Maggie (our Magellan GPS ) led my mom and I through the ghetto of Philadelphia, we safely arrived at our destination. Sort of. After all my visits to Jefferson I still have no clue how to get around all those one-way streets. It is so overwhelming, that my mom and I always default to the Walnut St. Theater parking lot because we can get there and know how to get home. We are willing to pay more for our sanity!
We parked and made it 10 minutes early. Plenty of time to fill out the 4 forms they had for me. I feel like I am being tested. List all the medications you are currently taking. The dosage, the route (this one caught be off guard), and the frequency. List all allergies. Wait...didn't I JUST fill all of these papers out on Monday before having my port put in? And the day I had my PET scan etc? I am baffled that a place as advanced as Jefferson needs its patients to continuously fill out the same information. If nothing has changed then look me up in the damn computer system, have me sign off on it and get on with it! Sorry, had to vent about that. I had writer's cramp and all I could think about was how badly I needed to use the locked bathroom. So strange, they must have been trying to keep the riff-raff from using the public restroom in the basement, so everyone must get the key with the 12 inch long wooden dowel attached just to open the door.
My 11am appointment did not begin until after 11:30 because the consent form I filled out a few weeks ago (so that the process would be speedier today) was the wrong form. So, we had to wait for the doctor to come over and sign a new one. Not before she stopped into the locked bathroom and tripped over her own feet when entering the room, oops!
First task of the day, making my body mold. This is what they will use to hold me in place during the actual radiation treatment. I laid down on a blue, air mattress/beanbag cushion on a table in the middle of the room. Due to the location of my tumor I had to lay my arms above my head so that they will not be in the way of the laser beam. It took 3 people to mold this thing. They can add and remove air with a little machine and when they are happy with things they completely deflate it. All the little balls get really tight together and create a mold around my body. When I got up all I could think of was those plastic sleds you use when you are little.
Next task, MRI. This was TERRIBLE! I have had several MRIs at this point, but for some reason this one really got to me. Maybe because I was told the entire day would only be an hour and a half and then I found out that was how long the MRI would take! My MRI tech, Phil, was very lucky I now take Celexa because I would have had to "shoot" the MRI messenger after all of it. First, the information about my chest port never made it to them even though I called over with it more than 24 hours prior (like I was supposed to). They needed to copy the information, then Phil had to talk to his boss because once you have a port you can only be scanned in certain machines. That took about 20 minutes. I got changed into the world's largest robe and then head back for the test. I was SO cold it was crazy. Shivering with a broken back SUCKS, in case you were wondering. After one of the portions of the test I was seconds away from pressing my call button when Phil gave me an update. I had 3 more contrast-free images to go before getting my IV. I told him I needed the air turned down because it was blowing into my ear and giving me a headache. I also told him to let me know the length of each remaining image so that I could count down. The 15 minute test made me crazy. For those of you who are not lucky enough to have had an MRI the noise is maddening. The earplugs are a joke. Next, came the contrast. Easy, right? WRONG! Phil tried twice and both times my veins had scar tissue in them and he was unable to advance the dye. UGH. (Maybe I will love my port.) Then Jackie came in, she didn't even want to try on my little veins. Then Melissa came in. She is a CAT scan tech. They use jumbo needles so she is good at IVs. Luckily she was able to get it in right away because I was serious when I said 3 strikes and I am done. In the past 4 days I have had 5 IVs stuck into my left arm, ouch! Finished up the scan and was ready for phase three.
Final phase, CAT scan while laying on the newly created body mold. Oh but wait. Cindy came out to tell us that the scanner was in use and we had to wait at least 30 minutes. I was about to LOSE it. I hadn't eaten since breakfast and at this point it is after 3. At least this scan did not require another needle. Around 3:30 they took me back. The whole process was less than 20 minutes and I was ready to run down the hallway to get the hell out of there.
The elevator doors closed at 4pm and we were getting into the car to drive home by 4:10. Stupid 95 traffic got us on the way home too. Again, thank you Celexa. That shit helps me keep my cool, I swear.
I know I am not the only person with cancer. I am not the only person who has to get scanned. I am not the only person to complain about the chaos that can ensue during a day at the hospital. But writing all this down helps me and hopefully all my crazy comments and information helps somebody, or makes somebody laugh.
Monday, February 18, 2013
Not the Smoothest
So I had my chest port put in this morning. Here is a checklist of everything that happened.
1. Take a Xanax to ensure several hours of sleep. CHECK
2. Nothing to eat or drink after midnight. CHECK
3. Take daily meds at the crack of dawn with a teeny, tiny sip of water in fear that more than that would push back procedure. CHECK
4. Leave the house by 6am. CHECK
5. Beat the traffic on I95 and get there early, CHECK.
6. Get a stomachache during the ride due to stress, DOUBLE CHECK!
7. Get changed, use the bathroom and wait for them to call my name, CHECK.
8. Get my IV on the first try, CHECK.
9. Lay on the very skinny table. CHECK
10. Doctors clean the area and talk to me way too much to try to distract me from the fact that within the hour a foreign object will be permanently inserted under my skin so that poison can more easily flow through my veins to kill my cancer, CHECK.
11. Drugs pumped into my IV to relax me. CHECK
12. Lidocaine injected directly into the sight to numb the area (extra for me because I am a redhead and apparently we have extra sensitive nerves). CHECK
13. Port and a tube that was far too long for me to think about inserted into my vein. CHECK
14. Sit up, with nurses help, immediately after the procedure. CHECK.
15. Walk a short distance to a chair and have my IV removed so that I could leave. CHECK
16. Less than a minute later, turn white, get lightheaded and insanely nauseous, CHECK!!!!
17. Get put into a wheely type of chair and put onto a stretcher. CHECK
18. Drink water, orange juice and eat saltines. CHECK
19. Have ANOTHER IV inserted for fluids and anti-nausea drugs because I still felt sick. CHECK!
20. Wait another hour or more until my blood pressure, pulse and skin color were normal. CHECK
21. Get into a wheelchair and wheeled to the car. CHECK
I have now been home for six hours and have hardly moved from the couch. The incision on my neck is much sorer than I expected it would be. It hurts to swallow too quickly. It hurts to laugh, sneeze, cough, or talk for too long. Even though I am in pain, I can handle that. I hate that I can't hold Hudson for 72 hours. Even after that time passes I still have to be careful because he could bump the port and I can only imagine how lovely that would feel.
The crazy part about this procedure was how calm I was again. I usually get so sick to my stomach that I end up spending all morning and sometimes the night before in the bathroom. Not this time. I am ready to beat this and the port is the first step to getting the medicine I need to win the battle. A little pain and the days to come are nothing compared to the 10 months of pain I have been dealing with. Scan me, prick me, and kill this cancer!
UPDATE (2-21-13): So it has been 4 days since the port was put in and thank goodness each day is less disgusting. The gaggy, vomity, pokey feeling is lessening with each passing hour. The pain in the incisions and 6 inch bruise is also fading. Maybe the doctors were serious when they told me that after 2 weeks I would not even notice it. Oh except for the fact that anyone can see a lump and tube running under my skin. Other than that, totally normal!
Some random, sort of funny, things I remember from the procedure...
I was shocked by how skinny the table was that I had to lay on. I am thin and I was nervous I wouldn't fit. I expressed this concern to the tech and asked how larger people (trying to be PC) fit on a table so small. He says, "Oh, all the fat people have hangovers." Ha, that cracked me up. Apparently there are plastic sides that can be added on to hold up people's extraness.
While another nurse or someone was wiping me down with iodine he says, "Don't worry, I will make sure to clean you up so you don't look like Snooki when you leave." At this point I was covered with a sheet and could not see what he was doing. Iodine is orange so that they can see where they sterilized before starting a procedure. He made sure to wipe off the "fake tan" before I left, haha. Because that was my major concern that day.
1. Take a Xanax to ensure several hours of sleep. CHECK
2. Nothing to eat or drink after midnight. CHECK
3. Take daily meds at the crack of dawn with a teeny, tiny sip of water in fear that more than that would push back procedure. CHECK
4. Leave the house by 6am. CHECK
5. Beat the traffic on I95 and get there early, CHECK.
6. Get a stomachache during the ride due to stress, DOUBLE CHECK!
7. Get changed, use the bathroom and wait for them to call my name, CHECK.
8. Get my IV on the first try, CHECK.
9. Lay on the very skinny table. CHECK
10. Doctors clean the area and talk to me way too much to try to distract me from the fact that within the hour a foreign object will be permanently inserted under my skin so that poison can more easily flow through my veins to kill my cancer, CHECK.
11. Drugs pumped into my IV to relax me. CHECK
12. Lidocaine injected directly into the sight to numb the area (extra for me because I am a redhead and apparently we have extra sensitive nerves). CHECK
13. Port and a tube that was far too long for me to think about inserted into my vein. CHECK
14. Sit up, with nurses help, immediately after the procedure. CHECK.
15. Walk a short distance to a chair and have my IV removed so that I could leave. CHECK
16. Less than a minute later, turn white, get lightheaded and insanely nauseous, CHECK!!!!
17. Get put into a wheely type of chair and put onto a stretcher. CHECK
18. Drink water, orange juice and eat saltines. CHECK
19. Have ANOTHER IV inserted for fluids and anti-nausea drugs because I still felt sick. CHECK!
20. Wait another hour or more until my blood pressure, pulse and skin color were normal. CHECK
21. Get into a wheelchair and wheeled to the car. CHECK
I have now been home for six hours and have hardly moved from the couch. The incision on my neck is much sorer than I expected it would be. It hurts to swallow too quickly. It hurts to laugh, sneeze, cough, or talk for too long. Even though I am in pain, I can handle that. I hate that I can't hold Hudson for 72 hours. Even after that time passes I still have to be careful because he could bump the port and I can only imagine how lovely that would feel.
The crazy part about this procedure was how calm I was again. I usually get so sick to my stomach that I end up spending all morning and sometimes the night before in the bathroom. Not this time. I am ready to beat this and the port is the first step to getting the medicine I need to win the battle. A little pain and the days to come are nothing compared to the 10 months of pain I have been dealing with. Scan me, prick me, and kill this cancer!
UPDATE (2-21-13): So it has been 4 days since the port was put in and thank goodness each day is less disgusting. The gaggy, vomity, pokey feeling is lessening with each passing hour. The pain in the incisions and 6 inch bruise is also fading. Maybe the doctors were serious when they told me that after 2 weeks I would not even notice it. Oh except for the fact that anyone can see a lump and tube running under my skin. Other than that, totally normal!
Some random, sort of funny, things I remember from the procedure...
I was shocked by how skinny the table was that I had to lay on. I am thin and I was nervous I wouldn't fit. I expressed this concern to the tech and asked how larger people (trying to be PC) fit on a table so small. He says, "Oh, all the fat people have hangovers." Ha, that cracked me up. Apparently there are plastic sides that can be added on to hold up people's extraness.
While another nurse or someone was wiping me down with iodine he says, "Don't worry, I will make sure to clean you up so you don't look like Snooki when you leave." At this point I was covered with a sheet and could not see what he was doing. Iodine is orange so that they can see where they sterilized before starting a procedure. He made sure to wipe off the "fake tan" before I left, haha. Because that was my major concern that day.
Sunday, February 10, 2013
Scans & Procedures
I have been poked, prodded and scanned far too many times since November 2012. Here is a list of all testing that has been done or will be done soon.
1. Annual Mammogram - This was so stressful because I had not had any testing since before I was pregnant. I had a set of images taken and then had to wait for the radiologist to read it. The tech came back and told me the doctor wanted more images because she didn't like what she saw! So, more squeezing, flattening and pain. (Oh and milk squirting out because I was still postpartum and apparently milk can be in there for up to 10 months!) All of this stress to tell me that everything was fine but next time I should not come so close to my period. Well....I had no clue when I was going to get my period because it was still screwy from having Hudson. Lesson learned!
2. X-ray of my back and ribs - This was easy and painless. I just did not like that I was being exposed to more radiation again because of my cancer history.
3. MRI of my back and ribs (without contrast) - Another painless test, but LONG and LOUD. I love how they give you headphones so you can listen to any radio station of your choice. That would be great if you could actually hear the songs over the banging and beeping of the machine. Apparently some people fall asleep during that test. Not sure how that happens since the sounds that machine makes are far worse than any fire alarm I have ever heard.
4. Dexascan (x-ray of my hips to check for osteoporosis) - Another painless test but more time off work to find out that osteoporosis is not my problem.
5. Bonescan - This test was an all day affair. I had to get to the hospital early so they could give me an injection of a small amount of radioactive something. They took one picture then sent me on my way for 2 hours. I had to drink a lot to help move the injection through my body. Then I came back and they took pictures for over an hour! I got nervous because they came in and asked me to turn over so they could get a better look. That is NEVER good.
*Side note - all of these tests only showed a compression fracture which all doctors agreed was odd but they were not concerned.
6. Kyphoplasty & Bone Biopsy - Kyphoplasty is a fancy way of saying the doctor puts some cement in the break to hold the bones in the correct place. More info here - http://www.spine-health.com/treatment/back-surgery/description-kyphoplasty-surgery I had to be put to sleep for this which was fine by me because I have had enough painful things done to me in the past. Knock me out and then poke around, thank you very much! The doctor took a piece of bone to test for cancer since he was already in there. Both things were done at the same time.
7. Bloodwork - YUCK! Unfortunately it becomes a way of life for cancer patients.
8. PET Scan - This was quite a process. I had to fast and drink lots of water beforehand. I was also not allowed to workout the day before (not a problem for me since my broken back does not allow for exercise). When I got there the nurse had to stab me in the arm 3 times before she could get the needle in and inject me with radioactive sugar water. Then I had to lay still and not talk for an hour and a half while the sugar water did its thing. That was difficult. Thank God for my Samsung Tablet. Oh, I almost forgot to mention the delicious 12oz creamy vanilla smoothie BARIUM drink. I had to drink at least half of it. At that point I was so hungry I almost enjoyed it. A necessary trip to the restroom to empty the bladder and it was finally time to get my images. The images only took about 18 minutes. Short in comparison to everything else I had done. I felt calm during the entire process because I knew I would finally have very specific answers. Doctors would be able to see all the cancer and build their plan to KILL it.
9. Echocardiogram - An ultrasound of my heart to make sure it is strong enough to handle some of the chemo meds.
10. Chest Port - This procedure will be Monday, Feb. 18. I will update this post afterwards.
11. Radiation Fitting - This will be Thursday, Feb. 21. I will have a CAT Scan & MRI that will both be used to create the gamma ray. Then they will create a body mold which will hold me in place during the actual radiation treatment(s).
The craziest part of this list is that I did not mention ANY of the tests I had done beginning in January 2008 through June 2010 when I was first diagnosed. Then all the testing and images leading up to my mastectomy in July 2010. I now have 7 scars, nerve damage and shoulder and back issues. All are reminders of the long, hard journey. Each time I see my scars I am amazed that I survived all I did. I have another difficult road ahead of me, but somehow I will come out stronger than when I started. It have survived two very tough situations and I will survive this too!
1. Annual Mammogram - This was so stressful because I had not had any testing since before I was pregnant. I had a set of images taken and then had to wait for the radiologist to read it. The tech came back and told me the doctor wanted more images because she didn't like what she saw! So, more squeezing, flattening and pain. (Oh and milk squirting out because I was still postpartum and apparently milk can be in there for up to 10 months!) All of this stress to tell me that everything was fine but next time I should not come so close to my period. Well....I had no clue when I was going to get my period because it was still screwy from having Hudson. Lesson learned!
2. X-ray of my back and ribs - This was easy and painless. I just did not like that I was being exposed to more radiation again because of my cancer history.
3. MRI of my back and ribs (without contrast) - Another painless test, but LONG and LOUD. I love how they give you headphones so you can listen to any radio station of your choice. That would be great if you could actually hear the songs over the banging and beeping of the machine. Apparently some people fall asleep during that test. Not sure how that happens since the sounds that machine makes are far worse than any fire alarm I have ever heard.
4. Dexascan (x-ray of my hips to check for osteoporosis) - Another painless test but more time off work to find out that osteoporosis is not my problem.
5. Bonescan - This test was an all day affair. I had to get to the hospital early so they could give me an injection of a small amount of radioactive something. They took one picture then sent me on my way for 2 hours. I had to drink a lot to help move the injection through my body. Then I came back and they took pictures for over an hour! I got nervous because they came in and asked me to turn over so they could get a better look. That is NEVER good.
*Side note - all of these tests only showed a compression fracture which all doctors agreed was odd but they were not concerned.
6. Kyphoplasty & Bone Biopsy - Kyphoplasty is a fancy way of saying the doctor puts some cement in the break to hold the bones in the correct place. More info here - http://www.spine-health.com/treatment/back-surgery/description-kyphoplasty-surgery I had to be put to sleep for this which was fine by me because I have had enough painful things done to me in the past. Knock me out and then poke around, thank you very much! The doctor took a piece of bone to test for cancer since he was already in there. Both things were done at the same time.
7. Bloodwork - YUCK! Unfortunately it becomes a way of life for cancer patients.
8. PET Scan - This was quite a process. I had to fast and drink lots of water beforehand. I was also not allowed to workout the day before (not a problem for me since my broken back does not allow for exercise). When I got there the nurse had to stab me in the arm 3 times before she could get the needle in and inject me with radioactive sugar water. Then I had to lay still and not talk for an hour and a half while the sugar water did its thing. That was difficult. Thank God for my Samsung Tablet. Oh, I almost forgot to mention the delicious 12oz creamy vanilla smoothie BARIUM drink. I had to drink at least half of it. At that point I was so hungry I almost enjoyed it. A necessary trip to the restroom to empty the bladder and it was finally time to get my images. The images only took about 18 minutes. Short in comparison to everything else I had done. I felt calm during the entire process because I knew I would finally have very specific answers. Doctors would be able to see all the cancer and build their plan to KILL it.
9. Echocardiogram - An ultrasound of my heart to make sure it is strong enough to handle some of the chemo meds.
10. Chest Port - This procedure will be Monday, Feb. 18. I will update this post afterwards.
11. Radiation Fitting - This will be Thursday, Feb. 21. I will have a CAT Scan & MRI that will both be used to create the gamma ray. Then they will create a body mold which will hold me in place during the actual radiation treatment(s).
The craziest part of this list is that I did not mention ANY of the tests I had done beginning in January 2008 through June 2010 when I was first diagnosed. Then all the testing and images leading up to my mastectomy in July 2010. I now have 7 scars, nerve damage and shoulder and back issues. All are reminders of the long, hard journey. Each time I see my scars I am amazed that I survived all I did. I have another difficult road ahead of me, but somehow I will come out stronger than when I started. It have survived two very tough situations and I will survive this too!
Wednesday, February 6, 2013
Why Blog Now?
Well, two weeks after my mastectomy I got engaged. Nine months after that I got married. Three months later I got pregnant and on April 6, 2012 I had my son Hudson. About 10 weeks after he was born I was leaning over to pick him up off the floor when I suddenly felt a sharp, burning pain in my back. I was unable to get up. We both lay crying on the floor until I could figure out a way to move. 4 months later I finally got an x-ray because the pain would just not go away. They found I had a compression fracture in my spine!! Weird for someone so young to have that happen for no reason.
The fracture led to an MRI, dexascan (which is a test to look for osteoporosis) and a bone scan. None of these gave us any information other than I had a compression fracture that was not healing. Two months after these tests I decided to go to an orthopedic back specialist to get some pain relief. He put cement in the break to help it heal and while he was in there he did a biopsy. He was suspicious of a break that would not heal after 9 months. Since I already had cancer he wanted to be safe.
THANK GOD he did that biopsy. A microscopic, asshole cancer cell broke free and found a home for itself in my back. The cancer weakened my bone and it broke when I picked up my son.
This finding led to a PET scan which I just found out that there is also some cancer in a lymph node in my right armpit. The crazy thing is that when I had my mastectomy I had several nodes tested and they were all clean. How the hell did this happen? At least having this information gives my doctors a better understanding as to how my back got cancer.
After finding out that I will be dealing with cancer again, I knew I would need to find a way to vent and write down all the crazy things going on in my head. I have to have chemo and radiation this time so I will document those experiences.
I am scared shitless about this whole process, but somehow I also have an unexplainable calm over me most of the time. Maybe it is because I know I have to be strong and kill this cancer so that I can get back to being a mom and wife. I feel like this broken back has really kept me from being good at anything....my job, housekeeping, raising my son, my relationships etc.
The fracture led to an MRI, dexascan (which is a test to look for osteoporosis) and a bone scan. None of these gave us any information other than I had a compression fracture that was not healing. Two months after these tests I decided to go to an orthopedic back specialist to get some pain relief. He put cement in the break to help it heal and while he was in there he did a biopsy. He was suspicious of a break that would not heal after 9 months. Since I already had cancer he wanted to be safe.
THANK GOD he did that biopsy. A microscopic, asshole cancer cell broke free and found a home for itself in my back. The cancer weakened my bone and it broke when I picked up my son.
This finding led to a PET scan which I just found out that there is also some cancer in a lymph node in my right armpit. The crazy thing is that when I had my mastectomy I had several nodes tested and they were all clean. How the hell did this happen? At least having this information gives my doctors a better understanding as to how my back got cancer.
After finding out that I will be dealing with cancer again, I knew I would need to find a way to vent and write down all the crazy things going on in my head. I have to have chemo and radiation this time so I will document those experiences.
I am scared shitless about this whole process, but somehow I also have an unexplainable calm over me most of the time. Maybe it is because I know I have to be strong and kill this cancer so that I can get back to being a mom and wife. I feel like this broken back has really kept me from being good at anything....my job, housekeeping, raising my son, my relationships etc.
Tuesday, February 5, 2013
My Goal
My goal is to bring a voice to the nitty-gritty "scary" stuff surrounding cancer. I hope to open the lines of communication and bring up topics people are embarrassed or scared to ask about. Hopefully my sarcastic and sometimes blunt delivery of my personal experiences will help somebody. That being said, I tend to be overly specific and often use profanity. I apologize in advance if I offend anybody.
*Side note: Scientists have found that people may actually instinctively swear to help reduce pain. Therefore, I basically have permission from mother nature to drop as many "F" bombs as necessary to deal with my current situation. Time Magazine published this article, I cannot make this SH*T up! http://www.time.com/time/magazine/article/0,9171,1913773,00.html
*Side note: Scientists have found that people may actually instinctively swear to help reduce pain. Therefore, I basically have permission from mother nature to drop as many "F" bombs as necessary to deal with my current situation. Time Magazine published this article, I cannot make this SH*T up! http://www.time.com/time/magazine/article/0,9171,1913773,00.html
WARNING to all men out there: If you get queasy when your
wife or girlfriend mentions menstrual cramps, bloating or tampons, this is NOT
the blog for you. I will be covering topics such as mammograms, catheters,
turquoise urine, hair loss, “Bye Bye Booby” parties and everything else in between.
Monday, February 4, 2013
A Brief History
On June 4, 2010, after two years of doctor's appointments, pain, an abscess and multiple ultrasounds, a biopsy finally gave me the answer I was fearful of all along. I was 27 years old and I had BREAST CANCER! I was in shock. I was sad. I was PISSED. I knew something was wrong. I had to ask for the biopsy because the doctor himself was convinced it was nothing major since I was so young. He even said, "I do not want to rush to biopsy or remove anything because I do not want to mutilate you." Who cares if I have a scar on my boob? I would rather remove something, have a scar and find out it is nothing than find out I have an advanced stage cancer because my doctor was worried about how nice my boob looked.
I was not happy with my first doctor so I quickly got everything together to get a second opinion. Unfortunately that meant A LOT more tests and needles to end up with the same diagnosis. I was diagnosed with DCIS (ductal carcinoma in situ) which basically means cancer of the mammary ducts. Click here for more information http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001911/ . According to my doctors, "I won the breast cancer lottery." I had a non-aggressive type without hormone receptors and later we found out it was NOT in my lymph nodes and it was noninvasive. I had genetic testing and I did not have mutations of the breast cancer gene. Due to all of these factors I opted for a mastectomy of the infected breast with immediate reconstruction using a part of my lat muscle to build the new breast. On July 29, 2010 I had my surgery. I did not need radiation or chemo but the recovery was painful and long. Every 2-3 weeks I could feel improvements.
I went through physical therapy to rebuild the muscles that were damaged by the surgery and every six months continued to get my mammograms or MRIs. Every three months I went to my breast specialist, oncologist, or plastic surgeon. Every appointment was positive and each test came back clear. I could see the light at the end of my cancer journey. I was ready to move on with my life. Thankfully I opened my mouth and asked for the biopsy. Who knows how long it would have been before anyone found the cancer.
Lesson to take from this...Speak up for yourself. You know your body better than anyone. If you do not think a doctor is doing enough for you then go to another doctor. My oncologist has a philosophy she tells all her students, "If you see something, biopsy it." That is the only way you can truly know what is going on. Biopsies may not be enjoyable but they are a hell of a lot better than the necessary treatments for late-stage cancer.
I was not happy with my first doctor so I quickly got everything together to get a second opinion. Unfortunately that meant A LOT more tests and needles to end up with the same diagnosis. I was diagnosed with DCIS (ductal carcinoma in situ) which basically means cancer of the mammary ducts. Click here for more information http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001911/ . According to my doctors, "I won the breast cancer lottery." I had a non-aggressive type without hormone receptors and later we found out it was NOT in my lymph nodes and it was noninvasive. I had genetic testing and I did not have mutations of the breast cancer gene. Due to all of these factors I opted for a mastectomy of the infected breast with immediate reconstruction using a part of my lat muscle to build the new breast. On July 29, 2010 I had my surgery. I did not need radiation or chemo but the recovery was painful and long. Every 2-3 weeks I could feel improvements.
I went through physical therapy to rebuild the muscles that were damaged by the surgery and every six months continued to get my mammograms or MRIs. Every three months I went to my breast specialist, oncologist, or plastic surgeon. Every appointment was positive and each test came back clear. I could see the light at the end of my cancer journey. I was ready to move on with my life. Thankfully I opened my mouth and asked for the biopsy. Who knows how long it would have been before anyone found the cancer.
Lesson to take from this...Speak up for yourself. You know your body better than anyone. If you do not think a doctor is doing enough for you then go to another doctor. My oncologist has a philosophy she tells all her students, "If you see something, biopsy it." That is the only way you can truly know what is going on. Biopsies may not be enjoyable but they are a hell of a lot better than the necessary treatments for late-stage cancer.
Subscribe to:
Posts (Atom)