I'm already behind because things just happen too fast.
Thursday night was the first time I really cried. I really did not want to have this tube placed into my body, and I fell asleep with my hand on my chest. Friday, September 26th, I had my Broviac tunneled central venous catheter placed into the right side of my chest. My radiology tech's name was Poblete, so we instantly bonded and he helped lighten the mood.
The nurse explained the procedure. I would have a local anesthesia and the radiologist would insert the Broviac under the skin into the jugular vein. The jugular vein? Yikes! I didn't wear any mascara because I felt I was going to have some tears, and I was right. As I was laying on the table I had tears going down the sides of my face. The tech asked me if I was crying and I said, "No! I have allergies." I then told him that this was the first time I cried, and he told me not to worry, they would help me beat my disease. I told him that wasn't why I was crying! It was because I didn't want the Broviac! It's creepy imaging something in your chest and hanging off of it! He laughed.
We were waiting for the doctor, so I took advantage of my new relationship with my tech and asked if he wanted to pray with me or if I should pray by myself. He came over to me and said he would pray, he held my hand and put his other hand on my shoulder and said the most beautiful prayer that instantly calmed me down. I was then ready when the doctor started the procedure.
It's weird when you are awake for something like this. You listen to your medical team's conversation and it has nothing to do with your very delicate and important procedure! My head was turned to the side and the doc kept pushing his arm down on my nose so it was hard to breathe. I prayed the whole time and still remained calm. Then he was finished! At least my new fashion accessory is a pretty purple color. The nurse dressed my catheter area, I got dressed and was released at 3:30. My neck was a bit sore and stiff. I had an appointment at 5:30 to go over Broviac care, so I would be able to make my "hair system" appointment at 4:15.
I was so fortunate that my neighbor and good friend Sherri was able to drive me around and hang out with me all afternoon. I impulsively made the wig appointment about an hour before my Broviac appointment, hoping I'd not only be finished with my procedure on time but that I'd feel good! Several of my friends from church referred me to this salon, so I made the appointment thinking what the heck. I tried on a few different styles that the stylist, Sherri and I thought might be good. I was only supposed to focus on style first and not color, but I had trouble doing that. The wigs I had tried on at the first store I went to were pretty much similar to my own hair, so this time we went with a different look and guess what? We found Gabby, a sassy light brown, highlighted wig that's shorter than my own hair but super cute. The two of them said that it looked like I just went to the salon and got a new cut and color! I liked it, and "what the heck" turned into "I'll take it!" Much thanks to my parents who bought Gabby for me.
Sherri drove me back to Kaiser and sat with me while a sweet nurse, Rafi, changed my dressing since it had some blood on it. Ew. Then she showed us how to "flush" my line. What? I will have to do this every morning and evening. Just for a few days while it heals, right? No, until it is removed. WHAT? Ok, creepy just turned into creepier. Using prefilled syringes, I have to flush my line first with saline and then with heparin, to prevent blood clots in my blood vessels. Gross AND creepy!! Rafi showed me how to do it and then I tried it. Ok, it wasn't that bad. I thought I could probably do it myself. Rafi then sent us down to the pharmacy to pick up my supplies. We waited quite awhile until my TWO GROCERY-SIZED BAGS were ready! I got boxes of syringes, purple gloves and alcohol wipes. I also got a package with all of my dressing materials. If my dressing ever gets wet, I will need to go to urgent care and be redressed. Haha.
When Sherri and I were talking to Rafi, she said something that made sense. I've been looking at my situation as having restrictions rather than taking precautions. It's all in my best interest. I have guidelines which have been found to be helpful in treating cancer patients, and I was diagnosed with cancer. Sherri said it's amazing that one word can change your whole outlook on everything. And my outlook has changed.
Midlife necessities
Midlife necessities
Tuesday, September 30, 2014
Friday, September 26, 2014
Sushi and the Salad Bar
It's becoming more real as each day passes.
Tuesday afternoon's chemo class was just too much information in a short period of time. I had read all my brochures from Kaiser and the American Cancer Society and done some online research, but this class...
There were only three patients in the large meeting room. Talked to the older man sitting across from me while we waited for the class to start. He was due to retire in January and was recently diagnosed with bladder cancer. Geez. Poor guy. The nurse started the 45 minute video. Most of the patients said the same thing, "When I heard that I had cancer I was devastated and I cried for two weeks." I wondered what's wrong with me that I haven't had that reaction. There were about six or eight different topics, I don't remember them all but there were do's and don'ts and what happens if and what to watch out for. Then the nurse gave each of us a packet that had our specific diagnosis and treatment plan, and lots of papers, the first one being a notice of the Proposition 65 Warning stating that our chemotherapy for our cancer treatment could, in fact, cause cancer. Is that the definition of irony?
The next paper was titled "Chemotherapy: After Your Visit" and states that if I ever get a fever over 100.5 I need to go to the emergency room immediately. If I develop a rash, I'm to contact the call center. If it's mouth sores, follow the mucositis regimen included in the packet. My medicine cabinet needs to be stocked with a digital thermometer, Tylenol, Benedryl and Imodium. Sounds great so far.
More do's and don'ts regarding nutrition. No raw meat or eggs, which means NO SUSHI. All fresh fruit and vegetables must be washed and peeled, and since you can't peel lettuce, that means NO SALAD. Chemo can weaken your immune system by lowering your white blood count, which puts you at risk of getting sick from foods with either a naturally high level of bacteria, like feta, Gorgonzola, blue and Brie cheese, or foods that can become easily contaminated, like those found at salad bars, delis, buffets, sidewalk vendors and potlucks. No eggs benedict (hollandaise sauce) or fresh berries. Must avoid hot dogs, bacon and sausage because they have a tendency to be undercooked. As for alcohol, apparently it might not be a good idea with the anti-nausea meds and also might affect how the liver works at filtering all the chemo meds. Now when I started fussing about all these don'ts, the nurse said, "I'm not in your house. These are just guidelines." I told her, half jokingly, "Ok, stay outta my house!" But I get it. Basically I need to eat healthy and do my best to avoid the stuff that 's not in my best interest to consume.
Wait. The diet changes depending on the chemo side effects! We reviewed ten double-sided papers with possible side effects, and I shall list them all: fatigue, mucositis, diarrhea, constipation, nausea/vomiting, peripheral neuropathy, hair loss, anemia, thrombocytopenia, and neutropenia. Each side effect has its own set of remedies, some of which contradict another one. Hopefully I would only get one side effect at a time. The nurse had our specific info in her hand, and when we talked about nausea, she looked at my paperwork and then at me, saying, "You need to be sure and take all your anti-nausea meds. Your first four chemo cycles are the toughest, and the patients have dubbed your treatment 'The Red Devil.'" Wow. I cannot wait to get started! When we discussed hair loss, she said that not everyone loses their hair. Again she looked at my treatment plan and then at me, saying, "You will lose your hair." I'm glad I appreciate blunt honesty.
I also found out my chemo schedule. I will need blood drawn before every chemo session to make sure I am healthy enough for the treatment. It takes two hours to get the results, so my Mondays from now until March will consist of having blood drawn at 8:30, then breakfast (with no bacon, sausage, or eggs benedict), and then chemo for approximately three hours starting at 10:30. The other guy in the class has treatment for 7-8 hours, and then has to take home a pump and do chemo at home for five more days. Holy cow! I didn't find out what kind of cancer he had but I sure felt for him. I don't think he said a word the entire time.
Well after all that I told my BFF that I felt like I needed a drink and a trip to the salad bar, so we went to Claim Jumper for dinner.
Wednesday was my bone scan, so I took myself to Kaiser for another injection of radioactive isotopes. I was told to drink lots of liquid before returning for the scan (injection was at 11:30 and scan would be at 1:15). I went to Starbucks for my favorite chocolate croissant, drank three bottles of water and worked on my blog. The scan itself was easy. Fully clothed, on my back, a large, flat screen near my nose passed over my body and I was done.
Today, Thursday, I had my follow-up appointment with my chemo oncologist. He gave me the results of my scans, no sign of cancer! He said it was unusual for scans to be ordered for circumstances like mine (not really suspecting that the cancer had spread) but I am glad that I have a baseline that looks pretty good. And we found out that I have what looks like a fibroid in my uterus so I will need to see the gynocologist. Supposedly it's nothing to worry about. The doctor wanted to make sure I didn't have any questions or concerns about his recommended treatment for me, and told me he was actually hired for the MoVal Kaiser and I would be getting another doctor and my treatment was all planned out and in "the system" with all his notes and not to worry. He also told me again that I'm going to lose my hair (why does everyone want me to know that so badly???). He told me that everything I will be going through is just temporary, and that they want to do everything possible to ensure "quality of life" while I'm going through it. That was nicer to hear than "you're going to lose your hair."
After he signed my off-work order and the nurse gave me my papers, I went to Walmart to get a few things on my chemo list. I got my digital thermometer (one that gives your temperature in only 2 seconds is double the price of one that takes 20 seconds. Waiting 18 more seconds doesn't bother me.) I bought Greek yogurt, which I already love and usually have in my fridge, applesauce and chocolate pudding. Smooth foods are something I'm supposed to have on hand. And some frozen fruit for the Nutri-bullet to make smoothies.
When I got home I had a surprise waiting for me in the mail. Erika and Allie ordered me my first hat, an adorable little burgundy cap with a cute flower on the side. I must admit that I cried a bit, and I'm not sure if it was because it hit me that I'm going to be bald or if it's because I have the best daughters in the whole, wide world. Maybe a little of each.
Tonight is the last night that I'll be able to sleep without snagging the sheets. Seriously, I'm creeped out and really bummed by the thought of what's happening tomorrow, knowing that I will have a tube stuck to my chest for the next five or so months. When my friend Claudia called to pray for me, she reminded me that God worked out the details of my health care in advance of my cancer. He knew what would happen even though I did not. And he still knows what will happen. I need that thought to sustain me tomorrow when I get the Broviac catheter inserted, Monday when I start chemo, and for the next seven months as I take this unexpected journey.
Tuesday afternoon's chemo class was just too much information in a short period of time. I had read all my brochures from Kaiser and the American Cancer Society and done some online research, but this class...
There were only three patients in the large meeting room. Talked to the older man sitting across from me while we waited for the class to start. He was due to retire in January and was recently diagnosed with bladder cancer. Geez. Poor guy. The nurse started the 45 minute video. Most of the patients said the same thing, "When I heard that I had cancer I was devastated and I cried for two weeks." I wondered what's wrong with me that I haven't had that reaction. There were about six or eight different topics, I don't remember them all but there were do's and don'ts and what happens if and what to watch out for. Then the nurse gave each of us a packet that had our specific diagnosis and treatment plan, and lots of papers, the first one being a notice of the Proposition 65 Warning stating that our chemotherapy for our cancer treatment could, in fact, cause cancer. Is that the definition of irony?
The next paper was titled "Chemotherapy: After Your Visit" and states that if I ever get a fever over 100.5 I need to go to the emergency room immediately. If I develop a rash, I'm to contact the call center. If it's mouth sores, follow the mucositis regimen included in the packet. My medicine cabinet needs to be stocked with a digital thermometer, Tylenol, Benedryl and Imodium. Sounds great so far.
More do's and don'ts regarding nutrition. No raw meat or eggs, which means NO SUSHI. All fresh fruit and vegetables must be washed and peeled, and since you can't peel lettuce, that means NO SALAD. Chemo can weaken your immune system by lowering your white blood count, which puts you at risk of getting sick from foods with either a naturally high level of bacteria, like feta, Gorgonzola, blue and Brie cheese, or foods that can become easily contaminated, like those found at salad bars, delis, buffets, sidewalk vendors and potlucks. No eggs benedict (hollandaise sauce) or fresh berries. Must avoid hot dogs, bacon and sausage because they have a tendency to be undercooked. As for alcohol, apparently it might not be a good idea with the anti-nausea meds and also might affect how the liver works at filtering all the chemo meds. Now when I started fussing about all these don'ts, the nurse said, "I'm not in your house. These are just guidelines." I told her, half jokingly, "Ok, stay outta my house!" But I get it. Basically I need to eat healthy and do my best to avoid the stuff that 's not in my best interest to consume.
Wait. The diet changes depending on the chemo side effects! We reviewed ten double-sided papers with possible side effects, and I shall list them all: fatigue, mucositis, diarrhea, constipation, nausea/vomiting, peripheral neuropathy, hair loss, anemia, thrombocytopenia, and neutropenia. Each side effect has its own set of remedies, some of which contradict another one. Hopefully I would only get one side effect at a time. The nurse had our specific info in her hand, and when we talked about nausea, she looked at my paperwork and then at me, saying, "You need to be sure and take all your anti-nausea meds. Your first four chemo cycles are the toughest, and the patients have dubbed your treatment 'The Red Devil.'" Wow. I cannot wait to get started! When we discussed hair loss, she said that not everyone loses their hair. Again she looked at my treatment plan and then at me, saying, "You will lose your hair." I'm glad I appreciate blunt honesty.
I also found out my chemo schedule. I will need blood drawn before every chemo session to make sure I am healthy enough for the treatment. It takes two hours to get the results, so my Mondays from now until March will consist of having blood drawn at 8:30, then breakfast (with no bacon, sausage, or eggs benedict), and then chemo for approximately three hours starting at 10:30. The other guy in the class has treatment for 7-8 hours, and then has to take home a pump and do chemo at home for five more days. Holy cow! I didn't find out what kind of cancer he had but I sure felt for him. I don't think he said a word the entire time.
Well after all that I told my BFF that I felt like I needed a drink and a trip to the salad bar, so we went to Claim Jumper for dinner.
Wednesday was my bone scan, so I took myself to Kaiser for another injection of radioactive isotopes. I was told to drink lots of liquid before returning for the scan (injection was at 11:30 and scan would be at 1:15). I went to Starbucks for my favorite chocolate croissant, drank three bottles of water and worked on my blog. The scan itself was easy. Fully clothed, on my back, a large, flat screen near my nose passed over my body and I was done.
Today, Thursday, I had my follow-up appointment with my chemo oncologist. He gave me the results of my scans, no sign of cancer! He said it was unusual for scans to be ordered for circumstances like mine (not really suspecting that the cancer had spread) but I am glad that I have a baseline that looks pretty good. And we found out that I have what looks like a fibroid in my uterus so I will need to see the gynocologist. Supposedly it's nothing to worry about. The doctor wanted to make sure I didn't have any questions or concerns about his recommended treatment for me, and told me he was actually hired for the MoVal Kaiser and I would be getting another doctor and my treatment was all planned out and in "the system" with all his notes and not to worry. He also told me again that I'm going to lose my hair (why does everyone want me to know that so badly???). He told me that everything I will be going through is just temporary, and that they want to do everything possible to ensure "quality of life" while I'm going through it. That was nicer to hear than "you're going to lose your hair."
After he signed my off-work order and the nurse gave me my papers, I went to Walmart to get a few things on my chemo list. I got my digital thermometer (one that gives your temperature in only 2 seconds is double the price of one that takes 20 seconds. Waiting 18 more seconds doesn't bother me.) I bought Greek yogurt, which I already love and usually have in my fridge, applesauce and chocolate pudding. Smooth foods are something I'm supposed to have on hand. And some frozen fruit for the Nutri-bullet to make smoothies.
When I got home I had a surprise waiting for me in the mail. Erika and Allie ordered me my first hat, an adorable little burgundy cap with a cute flower on the side. I must admit that I cried a bit, and I'm not sure if it was because it hit me that I'm going to be bald or if it's because I have the best daughters in the whole, wide world. Maybe a little of each.
Tonight is the last night that I'll be able to sleep without snagging the sheets. Seriously, I'm creeped out and really bummed by the thought of what's happening tomorrow, knowing that I will have a tube stuck to my chest for the next five or so months. When my friend Claudia called to pray for me, she reminded me that God worked out the details of my health care in advance of my cancer. He knew what would happen even though I did not. And he still knows what will happen. I need that thought to sustain me tomorrow when I get the Broviac catheter inserted, Monday when I start chemo, and for the next seven months as I take this unexpected journey.
Wednesday, September 24, 2014
Some Answers but More Questions
There's a lot going on this week.
On Monday some kind friends I hadn't seen in quite awhile took me to lunch and to The Wigs, a strip mall shop with hundreds of heads all looking at me with their shiny, fake hair. The sales associate asked me if I needed something for a special occasion. Well I suppose needing a wig because you are losing your hair to chemo could be considered special. My friends and I chose a few pieces and I tried them on. We took pictures of the best ones, the ones that looked similar to my dark brown, shoulder-length hair right now, but I wasn't ready to make any decisions. A decent-looking wig is not cheap, and I still don't know how I feel about wearing one. Will I wear it often? Should I have one on hand for special occasions? Part of me wanted to go a little crazy and try on a long blond or red one, but another part of me just wanted to get out of there. I might go back this weekend and try again.
Yesterday morning I had an appointment at the Riverside County Workforce Development Center in order to meet the requirements for receiving unemployment benefits. I used to help people find jobs years ago when I worked for the county's welfare-to-work program, so it was weird being on the other side. In fact, I ran into two women I used to partner with who both asked me what I was doing there. Good question, on several levels. Since they didn't know about the cancer, maybe they meant "why does someone who used to help people find jobs need help finding a job?" It was kind of weird to be called out by the facilitator in front of the whole group. "Sandra and I used to work together back in the day." She wanted me to get a job coach (which is what I used to be) but they ended up giving me the forms for disability instead. Will my doctor sign the forms? If not, what kind of part-time job could I get?
After my appointment, I had a legal paperwork errand to do (is this the last one?), and then ended up at a place that provides cancer supportive services. I already felt odd about going there, and perhaps they need more funding, or volunteers, but I didn't get a very good first impression. It was an old house, and there was no reception desk and no one around to greet people who entered. An entire family was waiting in the "living room" and I walked into another room that had wigs and brochures that I looked at while waiting for someone to help me. A woman rushed through the room, quickly asking me what I needed and then telling me that she had several appontments and I could wait if I wanted to. I didn't want to wait. What if someone really needed help at that moment?
After that I went to Kaiser to take care of a few things. I had to get more blood drawn on my oncologist's orders, and when I checked in I was given seven stickers (meaning they'd take seven vials of blood). I was told to go right into the lab, bypassing the 30 people in the waiting room. Really? Ok. All the chairs were full and I was next. A woman came up next to me and asked me what my number was. She most likely thought I was cutting in line. I told her I didn't have a number, that I was told to go right in. She said, "Oh, you're STAT." "I guess so," I replied. I looked down at my stickers and there was a red stamp on the top one that actually said "STAT". Is a perk of preparing for chemo getting to go to the front of the line for "immediate, urgent and instant" service?
I then went to the pharmacy to pick up the medications my oncologist ordered for me. There were three, and all three were anti-nausea meds. One of them I'm supposed to take starting when I get home from my treatment, and the other two I am to take on the second and third days after chemo. Hmmm, is that a hint?
I went home from Kaiser to wait for my BFF to come pick me up to go back to Kaiser for my "What to Expect from Chemo" class. Talk about more questions than answers! I'll be writing another blog post for that one.
I may not have all the answers to my many questions, and that has been causing some anxiety and nights of interrupted sleep, so I have to remember this: "You will keep in perfect peace all who trust in you, all whose thoughts are fixed on you! Trust in the Lord always, for the Lord God is the eternal rock." (Isaiah 26:3-4)
On Monday some kind friends I hadn't seen in quite awhile took me to lunch and to The Wigs, a strip mall shop with hundreds of heads all looking at me with their shiny, fake hair. The sales associate asked me if I needed something for a special occasion. Well I suppose needing a wig because you are losing your hair to chemo could be considered special. My friends and I chose a few pieces and I tried them on. We took pictures of the best ones, the ones that looked similar to my dark brown, shoulder-length hair right now, but I wasn't ready to make any decisions. A decent-looking wig is not cheap, and I still don't know how I feel about wearing one. Will I wear it often? Should I have one on hand for special occasions? Part of me wanted to go a little crazy and try on a long blond or red one, but another part of me just wanted to get out of there. I might go back this weekend and try again.
Yesterday morning I had an appointment at the Riverside County Workforce Development Center in order to meet the requirements for receiving unemployment benefits. I used to help people find jobs years ago when I worked for the county's welfare-to-work program, so it was weird being on the other side. In fact, I ran into two women I used to partner with who both asked me what I was doing there. Good question, on several levels. Since they didn't know about the cancer, maybe they meant "why does someone who used to help people find jobs need help finding a job?" It was kind of weird to be called out by the facilitator in front of the whole group. "Sandra and I used to work together back in the day." She wanted me to get a job coach (which is what I used to be) but they ended up giving me the forms for disability instead. Will my doctor sign the forms? If not, what kind of part-time job could I get?
After my appointment, I had a legal paperwork errand to do (is this the last one?), and then ended up at a place that provides cancer supportive services. I already felt odd about going there, and perhaps they need more funding, or volunteers, but I didn't get a very good first impression. It was an old house, and there was no reception desk and no one around to greet people who entered. An entire family was waiting in the "living room" and I walked into another room that had wigs and brochures that I looked at while waiting for someone to help me. A woman rushed through the room, quickly asking me what I needed and then telling me that she had several appontments and I could wait if I wanted to. I didn't want to wait. What if someone really needed help at that moment?
After that I went to Kaiser to take care of a few things. I had to get more blood drawn on my oncologist's orders, and when I checked in I was given seven stickers (meaning they'd take seven vials of blood). I was told to go right into the lab, bypassing the 30 people in the waiting room. Really? Ok. All the chairs were full and I was next. A woman came up next to me and asked me what my number was. She most likely thought I was cutting in line. I told her I didn't have a number, that I was told to go right in. She said, "Oh, you're STAT." "I guess so," I replied. I looked down at my stickers and there was a red stamp on the top one that actually said "STAT". Is a perk of preparing for chemo getting to go to the front of the line for "immediate, urgent and instant" service?
I then went to the pharmacy to pick up the medications my oncologist ordered for me. There were three, and all three were anti-nausea meds. One of them I'm supposed to take starting when I get home from my treatment, and the other two I am to take on the second and third days after chemo. Hmmm, is that a hint?
I went home from Kaiser to wait for my BFF to come pick me up to go back to Kaiser for my "What to Expect from Chemo" class. Talk about more questions than answers! I'll be writing another blog post for that one.
I may not have all the answers to my many questions, and that has been causing some anxiety and nights of interrupted sleep, so I have to remember this: "You will keep in perfect peace all who trust in you, all whose thoughts are fixed on you! Trust in the Lord always, for the Lord God is the eternal rock." (Isaiah 26:3-4)
Thursday, September 18, 2014
Use the Good Mascara
Things are moving right along. I am healing nicely from my surgery, but need to add some stretching and strength exercises to my left arm as it feels like I'm pulling a tendon when I lift my arm over my head (found that out during the CT scan). All my appointments and procedures are scheduled, including a field trip to some wig shops JUST TO SEE.
Yesterday was my CT scan. Ew. I had some greek yogurt and green tea before my 8:30 deadline, then could only drink 32 ounces of water until my 10:30 appointment. I was so surprised and happy to see my dad sitting in the waiting room when I arrived! So kind of him! Didn't get to say more than hello when I was taken back for my first of two injections. They placed an IV into my arm and flushed the vein with a saline solution. I waited 20 minutes and then got some contrast material in the IV. The actual CT scan was no big deal but the reason for it IS a big deal. "Often the best method for detecting many different cancers, such as lymphoma and cancers of the lung, liver, kidney, ovary and pancreas, since the image allows a physician to confirm the presence of a tumor and measure its size, precise location and the extent of the tumor's involvement with other nearby tissue." (from www.radiologyinfo.org) My doctor said it's not likely that the cancer has spread beyond the two lymph nodes but we need to be sure.
I didn't feel claustrophobic (I know it's quite a bit different from an MRI machine) and it didn't hurt. But when the technician "pushed" the iodine things got ugly. She had warned me about most of the weird sensations I'd be feeling. "You will likely have a warm, flushed sensation during the injection of the contrast materials and a metallic taste in your mouth that lasts for at most a minute or two. You may experience a sensation like you have to urinate; however, this is actually a contrast effect and subsides quickly." (from www.imaginis.com) Yeah, it was a creepy feeling and I didn't like it. And I did not know about the nausea. I kept telling myself that I didn't want to have to start all over so I just prayed and breathed and then the procedure was finished. I told the technician that I needed a pan. She said, "No you don't. You're fine, take some deep breaths." Well I knew otherwise and wanted to save her some trouble cleaning up but she actually talked me out of it very quickly and I was on my way.
Dad and I went to breakfast (I love breakfast!) and then to Costco. I no longer have a Costco card so that was fun and I enjoyed my dad time. He bought me a few things (thank you dad!) and then dropped me off at Kaiser for my Muga scan. That one was easy. Just one injection of the radioactive tracer, placement of the electrodes, and ten minutes of gamma rays above my chest. My chemo oncologist needs to know what my heart looks like before I start chemo because one of my chemo drugs may damage the heart. Apparently I will be having all of the scans every few months while undergoing treatment to monitor all of my body parts. Kaiser is fast becoming my second home.
Today I met my radiation oncologist. I will have radiation at the Ontario Kaiser, which is about 25 minutes from home. The place was packed! I didn't have anyone go with me, thinking what could I possibly hear where I would need moral support or additional ears? My doctor was very nice, and very thorough, explaining my pathology report (again), and the radiation treatment I will be having when I'm finished with chemo. She drew pictures of body parts and where the radiation will be focused. She showed me where the radiation would enter and where it will exit. Exit? It has to exit? I guess I never understood radiation. She told me about typical side effects, like fatigue and sunburn at the points of entry and exit (exit again!). She also told me about lasting side effects, like leathery skin, brittle bones and burnt lungs. Burnt lungs? Just a little bit on the side. They cover up as much of the lung as they can during the treatment, but a little bit of lung will still get burned (what?). Since I'm not a smoker, it shouldn't affect my breathing ability (WHAT?). Well, this is the first time in a medical appointment or procedure that I almost cried (besides during the biopsy results appointment when I was telling my surgeon about my dear friend Traci). My eyes started watering but I held back the tears. Not time to cry just yet.
I will call to schedule my radiation treatment when I'm on my last cycle of chemo, which should be in late February or early March. That is so weird to say. I'm a planner by nature but I don't like planning this. It's feeling more "real". I still don't know how I feel about wigs, but want to try some on just in case. Last night I watched a video of a young woman who documented her hair growing back in after chemo, and the first real tears fell down my face while imagining myself.
Today the doctor said something about my cancer and treatment having only a 5% chance of the cancer coming back, which is very good. A 95% success rate is great! And then she said something very honest. "Hopefully you will not be in the 5%." Up until now I haven't really considered that I'm fighting cancer, or in a life or death battle. Everyone has been so positive, sharing stories of people they know who beat cancer. But so many of us also know people who haven't. I was diagnosed with stage 3 breast cancer, and it's a fact that my life will never be the same. I have more processing to do with this new knowledge.
There's a philosophy about eating dessert first, and not saving the fine china for holidays only. I was saving some expensive mascara I got as a bonus when I bought some perfume. Saving it for what? Not anymore. I'm using the good mascara.
Yesterday was my CT scan. Ew. I had some greek yogurt and green tea before my 8:30 deadline, then could only drink 32 ounces of water until my 10:30 appointment. I was so surprised and happy to see my dad sitting in the waiting room when I arrived! So kind of him! Didn't get to say more than hello when I was taken back for my first of two injections. They placed an IV into my arm and flushed the vein with a saline solution. I waited 20 minutes and then got some contrast material in the IV. The actual CT scan was no big deal but the reason for it IS a big deal. "Often the best method for detecting many different cancers, such as lymphoma and cancers of the lung, liver, kidney, ovary and pancreas, since the image allows a physician to confirm the presence of a tumor and measure its size, precise location and the extent of the tumor's involvement with other nearby tissue." (from www.radiologyinfo.org) My doctor said it's not likely that the cancer has spread beyond the two lymph nodes but we need to be sure.
I didn't feel claustrophobic (I know it's quite a bit different from an MRI machine) and it didn't hurt. But when the technician "pushed" the iodine things got ugly. She had warned me about most of the weird sensations I'd be feeling. "You will likely have a warm, flushed sensation during the injection of the contrast materials and a metallic taste in your mouth that lasts for at most a minute or two. You may experience a sensation like you have to urinate; however, this is actually a contrast effect and subsides quickly." (from www.imaginis.com) Yeah, it was a creepy feeling and I didn't like it. And I did not know about the nausea. I kept telling myself that I didn't want to have to start all over so I just prayed and breathed and then the procedure was finished. I told the technician that I needed a pan. She said, "No you don't. You're fine, take some deep breaths." Well I knew otherwise and wanted to save her some trouble cleaning up but she actually talked me out of it very quickly and I was on my way.
Dad and I went to breakfast (I love breakfast!) and then to Costco. I no longer have a Costco card so that was fun and I enjoyed my dad time. He bought me a few things (thank you dad!) and then dropped me off at Kaiser for my Muga scan. That one was easy. Just one injection of the radioactive tracer, placement of the electrodes, and ten minutes of gamma rays above my chest. My chemo oncologist needs to know what my heart looks like before I start chemo because one of my chemo drugs may damage the heart. Apparently I will be having all of the scans every few months while undergoing treatment to monitor all of my body parts. Kaiser is fast becoming my second home.
Today I met my radiation oncologist. I will have radiation at the Ontario Kaiser, which is about 25 minutes from home. The place was packed! I didn't have anyone go with me, thinking what could I possibly hear where I would need moral support or additional ears? My doctor was very nice, and very thorough, explaining my pathology report (again), and the radiation treatment I will be having when I'm finished with chemo. She drew pictures of body parts and where the radiation will be focused. She showed me where the radiation would enter and where it will exit. Exit? It has to exit? I guess I never understood radiation. She told me about typical side effects, like fatigue and sunburn at the points of entry and exit (exit again!). She also told me about lasting side effects, like leathery skin, brittle bones and burnt lungs. Burnt lungs? Just a little bit on the side. They cover up as much of the lung as they can during the treatment, but a little bit of lung will still get burned (what?). Since I'm not a smoker, it shouldn't affect my breathing ability (WHAT?). Well, this is the first time in a medical appointment or procedure that I almost cried (besides during the biopsy results appointment when I was telling my surgeon about my dear friend Traci). My eyes started watering but I held back the tears. Not time to cry just yet.
I will call to schedule my radiation treatment when I'm on my last cycle of chemo, which should be in late February or early March. That is so weird to say. I'm a planner by nature but I don't like planning this. It's feeling more "real". I still don't know how I feel about wigs, but want to try some on just in case. Last night I watched a video of a young woman who documented her hair growing back in after chemo, and the first real tears fell down my face while imagining myself.
Today the doctor said something about my cancer and treatment having only a 5% chance of the cancer coming back, which is very good. A 95% success rate is great! And then she said something very honest. "Hopefully you will not be in the 5%." Up until now I haven't really considered that I'm fighting cancer, or in a life or death battle. Everyone has been so positive, sharing stories of people they know who beat cancer. But so many of us also know people who haven't. I was diagnosed with stage 3 breast cancer, and it's a fact that my life will never be the same. I have more processing to do with this new knowledge.
There's a philosophy about eating dessert first, and not saving the fine china for holidays only. I was saving some expensive mascara I got as a bonus when I bought some perfume. Saving it for what? Not anymore. I'm using the good mascara.
Friday, September 12, 2014
I Think Therefore I Am Too Much
Life on the fast track is interesting. You have less time to think, which for me is probably a very, very good thing (if you know me you know I think too much). I took my first dog walk by myself since the surgery and it went well, I was able to handle both dogs and four bags of poop with no problem. The first phone call of the day was a bit surprising. It wasn't HR from the job I'm supposed to start on Monday (since they haven't called I'm thinking that they must have reconsidered and don't know how to tell me). It was to schedule my chemo! I thought I would have to get all my other appointments scheduled first. And I'm not quite sure why I thought chemo wouldn't start for another 4-8 weeks. I guess I'd better stop thinking because what I think isn't what's happening!
I was offered Fridays at 1:30, and that did not sound good to me. From my research it looks like the first few days after treatments are the hardest, so why bounce back on a Monday after everybody's gone back to work? I told the scheduler that I don't want to be sick on the weekend, and she replied, "Now, now, we're going to be positive! Not everyone gets sick." Well I figure those people can have Friday appointments. I asked if there was an opening on Mondays, she sighed and checked and offered me Mondays at 10:30. Much better. I don't have a lot of control over what's going on, so I took control of my chemo days and time and feel pretty good about that. When I told Allie, she said, "Mondays suck anyways so why not go with that?". There you go. Haha
I have my radiation consult, chemo class, chemo oncologist follow-up and central line surgery on the books. Need to get my lab work done and a pnemonia vaccination. Still waiting for appontments for all the scans, but I'm scheduled for my first chemo treatment on Monday, Septmember 29, at 10:30. I already have a driver for the first day, and have started a rotation of friends who want to "experience" chemo with me.
One of the next things I need to do is decide wig or no wig. I start chemo in two weeks, and hair usually starts falling out a week or two after the first treatment. Some great (and crazy) friends of mine want me to cut my hair short now and do something wild with it. I told them I'll wait until my hair grows back to do something since it will already be short. I cut my hair a few weeks ago and actually really like it right now so I'm going to take the time to style it and enjoy it while I can.
Last night I met my great (and crazy) friends for dinner. While talking I noticed a pretty woman with a bald head sitting a few tables away from me. I really felt like I wanted to talk to her, but didn't want to just walk up to her table and say "Hey!" It happened that she was in the restroom when Holly and I were too, so I grabbed her arms and told her, "I'm going to look like you in a few weeks." We hugged, she told us a bit about her situation, Holly told her she was beautiful, and I told her she looked great, and as we walked out of the restroom I told Holly that I guess now I'm part of the club.
Whether part of Club Pink or not, we all have our share of burdens, sometimes seen in a bald head or unseen in the body, mind or spirit. Remember Christ's words to us all, "I have told you these things so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world." John 16:33
Thursday, September 11, 2014
Zoooooom
Well that was fast!
This morning I got a call to schedule my radiation oncology appointment for next week. Then at noon I got a call to schedule my chemotherapy oncology appointment for today at 2:40! What?
My chemo doctor was very nice. He asked me questions about my health history, explained my pathology report in detail, and told me he's not concerned about the small amount of cancer found in the second lymph node. He was very positive about the surgery results, and the type of cancer I have that should respond well to the treatment plan he proposed. He talked to me about the results of clinical trials and gave me a chart with bars and numbers on it and since it's statistics (ie. math) I didn't really understand it but I understood the point and I trust that he's doing the right thing for me.
It's all good news. Kaiser is awesome because all of your info is in "the system", and all the doctors have access to it and add to it. Since my post-op appointment yesterday, my surgeon had already requested all my tests, and my chemo doc authorized lab work and the outpatient surgery to insert the tunneled central catheter into my chest. I thought that I would first have my three scans, then meet with the chemo and radiation oncologists, then my surgeon in a month, and then wait a few more weeks until fully healed from last week's surgery and probably wouldn't start chemo for 4-8 weeks from now. And then I thought I'd have chemo for a year, which would mean I wouldn't have hair until 2016.
I start chemo on September 25. In two weeks. Really.
Apparently my surgeon did a very good job and I am healing quickly. Guess it also helps that I'm relatively healthy and youngish. The next two weeks are going to be a blur with all my procedures and appointments (seven so far), including a class on what to expect with chemo. I will receive chemo treatments once a week rather than every two or three weeks. The Oncologist said studies have shown there's a slight advantage to doing this, so that's what we're doing. If all goes well, I'll finish chemo by the end of February 2014, and will have a short and sassy hairstyle by summer time! This was such great news! After chemo I'll have the radiation, and then hormone therapy (oral meds) for five to ten years. That doesn't sound too bad, right?
I asked his opinion about starting a new job right now and his advice was "don't". Besides all the time I'd need off for appointments and treatments, he didn't like that my job could include lots of driving. And since new jobs are always stressful, he said, "Tell them your doctor advised against it". I may not even have to tell them (haven't heard from them since I got the offer), but I feel relieved because I honestly didn't know what to do and I was supposed to start this Monday.
So everything is working itself out. Quickly!
"And we know that in all things God works for the good of those who love Him, who have been called according to His purpose." Romans 8:28
Wednesday, September 10, 2014
Post-op Appointment, or I Still Only Know What I Know
I'll be like my surgeon and jump right in. I'm part of the lucky 15% whose cancer doesn't show up on a mammogram for five years. No lump either. The good news is that my surgeon feels he got all the cancer in the breast. The margins around the tumor were clear, so good call on the lumpectomy rather than masectomy. The concern isn't so much the cancer in the breast as the cancer that has spread to the lymph nodes. Yep, nodes plural. The bad news is that we knew there was cancer in one lymph node but he didn't think there was any in the second one. Well, there was 1.0 cm in the first and .4 mm in the second, not much but any at all isn't good. With these findings they used to remove all the lymph nodes (bad news), but studies have now shown there's no need if radiation is done under the arm (good news).
So what's next? Will need three different scans - CT, bone and MUGA. I love that word, MUGA scan. That one is for a heart baseline because the chemo may affect the heart. And the other two scans are to see if the cancer has spread anywhere else in my body. I know the big question everyone has is what stage am I? Currently Stage 3, which I already knew from my research. Anytime the cancer spreads beyond its original location and is larger than 2 cm it becomes a Stage 3. And it's just a number, it doesn't necessarily mean it's any more or less tragic than any other stage. If there's any cancer anywhere else it automatically becomes a Stage 4. The surgeon feels it's unlikely that it has spread, but we won't know for sure until we get the scan results. After these tests I will meet with my new radiation and chemotherapy oncologists who will suggest my individualized treatment. Special treatment just for me!! Back to the surgeon in one month to check on the breast healing, and to see if I need any further surgery before beginning treatment. My doc feels I'll likely have a combo therapy called ACT for a whole year, with the first six months being harder than the second (less drugs in the combo the second six months). Wouldn't you know that hair loss is a side effect of all three drugs... May have radiation after chemo is finished or concurrently.
The surgeon apologized for giving me bad news every time he sees me. Also for being unable to give me any more answers. But he did tell me to go back to doing whatever I was doing before. Alcohol didn't cause my cancer and it's not gonna hurt now haha. But seriously as my friend Darlene (a cancer survivor herself) says, the sun will continue coming up every morning and I will eat and sleep and live everyday regardless of the cancer which, again from my friend Darlene, sucks. And I know logically that it does suck, even though I still haven't cried and I don't feel devastated. Well I still don't feel much of anything except if something's funny. Since my sense of humor isn't affected I'll focus on laughter and love and the fact that no matter what I'm going through, life is good.
In today's devotional, which I read before leaving for Kaiser, Jesus said, "I am with you and will watch over you wherever you go. My last recorded promise to My followers was: 'Surely I am with you always, to the very end of the age.' Let these assurances of My continual Presence fill you with Joy and Peace." (Jesus Calling by Sarah Young)
For more info on lymph nodes and cancer, go here lymph nodes and cancer.
Thursday, September 4, 2014
Sometimes There is No Understanding
The only thing I remember from my post-surgery conversation with the surgeon is me saying "Damn."
They found some cancer in one lymph node and removed the node. I will need chemo. I don't know anything else, won't know until my next appointment on September 10.
This wasn't part of the plan - a "simple" lumpectomy with six weeks of radiation. Kind of inconvenient but doable. I've got to process this twist but can't really process it until I know more. In the meantime, life goes on. I can't change anything, so there's no point in worrying. I'll focus on healing from my surgery and loving the people in my life.
Thank you for all the support and love you've shown me. I feel very blessed.
"Do not be anxious about anything, but in everything, by prayer and petition, with Thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and minds in Jesus Christ." Philippians 4:6-7
They found some cancer in one lymph node and removed the node. I will need chemo. I don't know anything else, won't know until my next appointment on September 10.
This wasn't part of the plan - a "simple" lumpectomy with six weeks of radiation. Kind of inconvenient but doable. I've got to process this twist but can't really process it until I know more. In the meantime, life goes on. I can't change anything, so there's no point in worrying. I'll focus on healing from my surgery and loving the people in my life.
Thank you for all the support and love you've shown me. I feel very blessed.
"Do not be anxious about anything, but in everything, by prayer and petition, with Thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and minds in Jesus Christ." Philippians 4:6-7
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