Timothy Elliot is a cancer health advocate dedicated to helping patients diagnosed with terminal illnesses cope with their diseases. If you have any questions, feel free to email him at creative4lyfe@gmail.com. Thank you, Timothy, for asking to use my blog as a forum for your work.
Ways To Cope With Cancer
Mentally processing and coping with chronic illnesses, like cancer, can be more complicated than some may assume. The emotional highs and lows, coupled with the physical trauma of enduring treatment side effects and chronic and sever pain, make for mentally distant, depressed, anxious, and stressed individuals. The different stages of cancer, from diagnosis to remission, each bring up distinct concerns and techniques for coping with them.
Diagnosis
Diagnosis is undeniably a very difficult process . The initial diagnosis presents the patient with a wave of new and shocking information. Starting with denial, the patient can experience a wide range of emotional distress. Coping with the emotional anxiety, depression, and fear often means that newly diagnosed patients miss important medical information during appointments with their doctor’s. New patients should take time to digest the news before attempting to understand exactly what treatment options are recommended. It can be especially taxing on those, like children and young adults, who are not usually considered at a high-risk for cancer. Allowing time for mental recuperation, and possibly scheduling an additional appointment, means that the patient has time to sort through their emotions, thus allowing them clarity of mind later, during the discussion of treatment options.
Treatment
Cancer treatment is also a mentally taxing experience. The level of aggression of treatment may depend on the patient’s type and stage of cancer. For example, mesothelioma patients often endure extremely aggressive treatment. Because of the latency of mesothelioma symptoms, patients’ cancer tends to have already metastasized. Mesothelioma life expectancy rates are low, and patients diagnosed with terminal cancer naturally experience a more drastic range of mental and emotional distress symptoms. Cancer patients struggling with anxiety and stress disorders, whether depression or panic attacks, may find relief in complementary therapies. Often, doctor recommended relaxation treatments like restorative yoga, massage, acupuncture, and tai chi offer both physical and emotional relief. Patients who feel that their health situations are beyond their own influence are often empowered by the possibility of reducing their own pain and improving their immune systems through their efforts, thus allowing a bit of much needed emotional stability. It may also be beneficial for patients and families of patients to seek professional guidance, either from therapists, support groups, or a combination of the two.
Remission
Though it may seem as though cancer survivors should be relieved and elated when they’re declared cancer-free, news of remission can result in devastating mental and emotional effects. Those who no longer have to battle cancer often live in fear and anxiety, dreading the return of the malignant cells. According to the National Cancer Institute, post-treatment survivors should be honest about the complexity of their emotions, coming to terms with the fact that there is nothing wrong about feeling fearful rather than happy. Expressing these feelings to supporters and family members can also aid in avoiding confusing family situations and miscommunications. Because of this support groups can be a crucial component of coping with cancer remission. Support groups offer companionship that individual counselors and doctors sometimes cannot. Being able to share mentally and emotionally challenging moments with those who are enduring them or who have overcome them provides a sort of outlet for patients. For example, speaking with a doctor about the difficulties of having survived breast cancer does not have the same mental outcome as speaking with other patients or survivors. Knowing that they are not alone in their mental and physical distress helps them to realize that their thoughts and feelings are not unfounded or unnecessary, but that they are natural and expected and that they can be coped with and, eventually, overcome.
Wednesday, March 23, 2011
Thursday, March 17, 2011
Time Flies When You're Having Some
Wow, it's been 6 months already since my last treatment. That means I'm 6 months in remission. Another 4.5 years and I'm cured! I'm very optimistic. I'd bet my life on it.
Time flies when you actually have some. Time to do what you want, time to work, time to play, time to yourself. No more daily or weekly hospital trips. No more being sick. No more needles. No more bone pain. No more toxins pulsating through your veins. That's the best part. I don't miss it in the least. It's funny, while you're going through all the treatment you just go with the flow and it becomes a part of ordinary life. It's not until after you've completed it all, and can now reflect on what just happened, that you realize you went through a lot of hell and crap.
Now my life is truly ordinary and I like it that way. I've been back at work for some time and am enjoying it. I like having a place to go to everyday. My boss is the greatest person I've ever met. He's been so patient and cooperative with my occasional follow up appointment (I have to have blood tests and CT Scans every 3 months), my tiredness and my chemo brain which has affected my memory quite a bit. But all should be totally back to normal soon.
I almost forgot to mention that I've finally resolved the chest and flank pain issues that landed me in the ER to only discover the tumor. If you've been following, I was in the ER December 2009 for the pain, and then again March 25, 2010 when they found the cancer. I was also back to the ER for the same pain in August 2010, which had us all perplexed because we thought the issue was resolved. Not so. January of this year it came back. I had just gone to bed and the aching started. I took a couple vicodin because I knew what was about to happen. It happened. The pain got so intense that I finally gave in and had Don drive me to the hospital. The only thing different this time is that the ER Doctor asked me if I'd ever had an ultrasound done of my gallbladder. No. So they did one the next day. Guess what. Multiple gallstones. Out it goes. I'll be happy to be rid of it. Actually, I have to be grateful to that lousy gallbladder because had it not been for the attacks, the tumor would not have been found so early stage and I would have had to go through much more chemo and radiation. Thank you, malfunctioning organ.
Once again, I manage to get away with something. Luck is on my side for sure.
Time flies when you actually have some. Time to do what you want, time to work, time to play, time to yourself. No more daily or weekly hospital trips. No more being sick. No more needles. No more bone pain. No more toxins pulsating through your veins. That's the best part. I don't miss it in the least. It's funny, while you're going through all the treatment you just go with the flow and it becomes a part of ordinary life. It's not until after you've completed it all, and can now reflect on what just happened, that you realize you went through a lot of hell and crap.
Now my life is truly ordinary and I like it that way. I've been back at work for some time and am enjoying it. I like having a place to go to everyday. My boss is the greatest person I've ever met. He's been so patient and cooperative with my occasional follow up appointment (I have to have blood tests and CT Scans every 3 months), my tiredness and my chemo brain which has affected my memory quite a bit. But all should be totally back to normal soon.
I almost forgot to mention that I've finally resolved the chest and flank pain issues that landed me in the ER to only discover the tumor. If you've been following, I was in the ER December 2009 for the pain, and then again March 25, 2010 when they found the cancer. I was also back to the ER for the same pain in August 2010, which had us all perplexed because we thought the issue was resolved. Not so. January of this year it came back. I had just gone to bed and the aching started. I took a couple vicodin because I knew what was about to happen. It happened. The pain got so intense that I finally gave in and had Don drive me to the hospital. The only thing different this time is that the ER Doctor asked me if I'd ever had an ultrasound done of my gallbladder. No. So they did one the next day. Guess what. Multiple gallstones. Out it goes. I'll be happy to be rid of it. Actually, I have to be grateful to that lousy gallbladder because had it not been for the attacks, the tumor would not have been found so early stage and I would have had to go through much more chemo and radiation. Thank you, malfunctioning organ.
Once again, I manage to get away with something. Luck is on my side for sure.
Friday, October 29, 2010
Updates
Another month has swiftly gone by since I last posted on my blog. I am happy to say that slowly my life is resuming one of normalcy. Aside from fatigue I've been experiencing joint pain similar to that of arthritis so my brother has prescribed me Lodine which seems to be helping immensely except that it causes drowsiness which I'm already have trouble with. I take gabapentin for the nerve issues and the occassional vicodin when all issues hit me at once.
One new side effect that I wasn't warned about is chemo induced menopause. I really wish someone had given me a heads up on that one. I had been experiencing severe hot flashes so I made an appointment with my gynecologist who ordered an FSH blood test. Levels above 20 are menopausal. I hit 76.7 which is post menopausal. We won't know for sure until I've had 12 months of no mensus. In the meantime, I can't take HRT (hormone replacement therapy - estrogen and progesterone) because of the increased risk of breast cancer. It's not recommended for someone who's already had cancer. So I need to look into other alternatives to ease the symptoms, one of which is FATIGUE! Wow, I'm being hit with a triple whammy of fatigue! The hot flashes aren't TOO bad. They're not great, but going without HRT won't kill me. But it may kill my husband. He has to deal with my mood swings, diminished sex drive, and sleep in a bedroom that's 50 degrees so I can recover from a hot flash. I'm sure this is not what he signed up for when he married me, but he keeps saying to me, "in sickness and in health, for better or worse." Really, he's a saint.
One new side effect that I wasn't warned about is chemo induced menopause. I really wish someone had given me a heads up on that one. I had been experiencing severe hot flashes so I made an appointment with my gynecologist who ordered an FSH blood test. Levels above 20 are menopausal. I hit 76.7 which is post menopausal. We won't know for sure until I've had 12 months of no mensus. In the meantime, I can't take HRT (hormone replacement therapy - estrogen and progesterone) because of the increased risk of breast cancer. It's not recommended for someone who's already had cancer. So I need to look into other alternatives to ease the symptoms, one of which is FATIGUE! Wow, I'm being hit with a triple whammy of fatigue! The hot flashes aren't TOO bad. They're not great, but going without HRT won't kill me. But it may kill my husband. He has to deal with my mood swings, diminished sex drive, and sleep in a bedroom that's 50 degrees so I can recover from a hot flash. I'm sure this is not what he signed up for when he married me, but he keeps saying to me, "in sickness and in health, for better or worse." Really, he's a saint.
Tuesday, September 7, 2010
An Article on Chemo Brain
I am posting this article about chemo brain because hopefully it will help explain why my blog written yesterday, September 6th, has much of the same content as my blog written on August 3rd. Ooops! My bad! I considered just deleting the redundancy I wrote yesterday, but then forgot to do it. Chemo brain. I think I'll just leave it as is. It may help someone recently diagnosed with cancer who is reading my blog.
Chemo Brain
For many years cancer survivors have worried about, joked about, and been frustrated with the mental cloudiness they notice before, during, and after chemotherapy. We don't know its exact cause, but this mental fog is commonly called chemo brain. Patients have noticed chemo brain for some time, but only recently have studies been done that could start to explain it.
Research has shown that some cancer drugs can, indeed, cause changes in the brain. Imaging tests have shown that after chemotherapy, some patients have smaller brain size in the parts of the brain that deal with memory, planning, putting thoughts into action, monitoring thought processes and behavior, and inhibition.
Some people report having these symptoms even before they start treatment. Others report it even though they have not had chemotherapy. Still others notice the problem when they are getting hormonal treatments. So the term "chemo brain" may not be completely accurate, but it is the name that most people call it right now.
Though the brain usually recovers over time, the sometimes vague yet distressing mental changes cancer patients notice are real, not imagined. These changes can make people unable to go back to their school, work, or social activities, or make it so that it takes a lot of mental effort to do so. They affect daily activities and need to be researched further.
What is chemo brain?
Here are just a few examples of what patients call chemo brain:
•forgetting things that they usually have no trouble recalling -- memory lapses
•trouble concentrating -- they can't focus on what they're doing
•trouble remembering details like names, dates, and sometimes larger events
•trouble multi-tasking, like answering the phone while cooking, without losing track of one of them -- less ability to do more than one thing at a time
•taking longer to finish things -- slower thinking and processing
•trouble remembering common words -- can't finish a sentence because you can't find the right words
For some people these effects happen quickly and only last a short time, while others have mild, long-term mental changes. Usually the changes that patients notice are very subtle, and others around them may not even notice any changes at all. Still, the people who have problems are well aware of the differences in their thinking. Many people do not tell their healthcare team about this problem until it affects their everyday life.
Doctors and researchers call chemo brain "mild cognitive impairment" and define it as being unable to remember certain things and having trouble finishing certain tasks or learning new skills.
Is chemo brain real?
Yes, chemo brain is real, but its cause is unknown. How often it happens, what may trigger it, or what can be done to prevent it, is also unknown.
Pictures of the brain have shown changes in the brain activity of breast cancer survivors treated with chemo when compared with those who were not treated with chemo. These changes were still seen on scans 5 to 10 years after treatment stopped. Chemo brain could be caused by any one or any combination of the following factors:
•the cancer itself
•chemo drugs
•other drugs used as part of treatment (such as anti-nausea or pain medicines)
•patient age
•stress
•low blood counts
•sleep problems
•infection
•depression
•tiredness (fatigue)
•hormone changes
•anxiety
What is known is that chemo brain is a real problem that affects both men and women. Even though chemo does not seem to be the only cause, studies have suggested that up to 70% of people who get chemo will notice symptoms of chemo brain.
What can I do to manage chemo brain?
Day-to-day coping
Experts have been studying memory for a long time. There are many resources to help you sharpen your mental abilities and manage the problems that may come with chemo brain. Some things that you can do are:
•Use a detailed daily planner. Keeping everything in one place makes it easier to find the reminders you may need. Serious planner users keep track of their appointments and schedules, "to do" lists, important dates, phone numbers and addresses, meeting notes, and even movies they'd like to see or books they'd like to read.
•Exercise your brain. Take a class, do word puzzles, or learn a new language.
•Get enough rest and sleep.
•Exercise your body. Regular physical activity is not only good for your body, but also improves your mood, makes you feel more alert, and decreases tiredness (fatigue).
•Eat your veggies. Studies have shown that eating more vegetables can help you maintain brain power.
•Set up and follow routines. Pick a certain place for commonly lost objects and put them there each time. Try to keep the same daily schedule.
•Don't try to multi-task. Focus on one thing at a time.
•Track your memory problems. Keep a diary of when you notice problems and the events that are going on at the time. (You might track this in your planner.) Medicines taken, time of day, and the situation you are in may help you figure out what affects your memory. Keeping track of when the problems are most noticeable can also help you prepare by not planning important conversations or appointments during those times.
•Try not to focus so much on how much these symptoms are bothering you. Accepting the problem will help you deal with it. As many patients have noted, being able to laugh about things you can't control can help you cope. And remember, you probably notice your problems much more than others do. Sometimes we all have to laugh about forgetting to take the grocery list with us to the store.
Chemo Brain
For many years cancer survivors have worried about, joked about, and been frustrated with the mental cloudiness they notice before, during, and after chemotherapy. We don't know its exact cause, but this mental fog is commonly called chemo brain. Patients have noticed chemo brain for some time, but only recently have studies been done that could start to explain it.
Research has shown that some cancer drugs can, indeed, cause changes in the brain. Imaging tests have shown that after chemotherapy, some patients have smaller brain size in the parts of the brain that deal with memory, planning, putting thoughts into action, monitoring thought processes and behavior, and inhibition.
Some people report having these symptoms even before they start treatment. Others report it even though they have not had chemotherapy. Still others notice the problem when they are getting hormonal treatments. So the term "chemo brain" may not be completely accurate, but it is the name that most people call it right now.
Though the brain usually recovers over time, the sometimes vague yet distressing mental changes cancer patients notice are real, not imagined. These changes can make people unable to go back to their school, work, or social activities, or make it so that it takes a lot of mental effort to do so. They affect daily activities and need to be researched further.
What is chemo brain?
Here are just a few examples of what patients call chemo brain:
•forgetting things that they usually have no trouble recalling -- memory lapses
•trouble concentrating -- they can't focus on what they're doing
•trouble remembering details like names, dates, and sometimes larger events
•trouble multi-tasking, like answering the phone while cooking, without losing track of one of them -- less ability to do more than one thing at a time
•taking longer to finish things -- slower thinking and processing
•trouble remembering common words -- can't finish a sentence because you can't find the right words
For some people these effects happen quickly and only last a short time, while others have mild, long-term mental changes. Usually the changes that patients notice are very subtle, and others around them may not even notice any changes at all. Still, the people who have problems are well aware of the differences in their thinking. Many people do not tell their healthcare team about this problem until it affects their everyday life.
Doctors and researchers call chemo brain "mild cognitive impairment" and define it as being unable to remember certain things and having trouble finishing certain tasks or learning new skills.
Is chemo brain real?
Yes, chemo brain is real, but its cause is unknown. How often it happens, what may trigger it, or what can be done to prevent it, is also unknown.
Pictures of the brain have shown changes in the brain activity of breast cancer survivors treated with chemo when compared with those who were not treated with chemo. These changes were still seen on scans 5 to 10 years after treatment stopped. Chemo brain could be caused by any one or any combination of the following factors:
•the cancer itself
•chemo drugs
•other drugs used as part of treatment (such as anti-nausea or pain medicines)
•patient age
•stress
•low blood counts
•sleep problems
•infection
•depression
•tiredness (fatigue)
•hormone changes
•anxiety
What is known is that chemo brain is a real problem that affects both men and women. Even though chemo does not seem to be the only cause, studies have suggested that up to 70% of people who get chemo will notice symptoms of chemo brain.
What can I do to manage chemo brain?
Day-to-day coping
Experts have been studying memory for a long time. There are many resources to help you sharpen your mental abilities and manage the problems that may come with chemo brain. Some things that you can do are:
•Use a detailed daily planner. Keeping everything in one place makes it easier to find the reminders you may need. Serious planner users keep track of their appointments and schedules, "to do" lists, important dates, phone numbers and addresses, meeting notes, and even movies they'd like to see or books they'd like to read.
•Exercise your brain. Take a class, do word puzzles, or learn a new language.
•Get enough rest and sleep.
•Exercise your body. Regular physical activity is not only good for your body, but also improves your mood, makes you feel more alert, and decreases tiredness (fatigue).
•Eat your veggies. Studies have shown that eating more vegetables can help you maintain brain power.
•Set up and follow routines. Pick a certain place for commonly lost objects and put them there each time. Try to keep the same daily schedule.
•Don't try to multi-task. Focus on one thing at a time.
•Track your memory problems. Keep a diary of when you notice problems and the events that are going on at the time. (You might track this in your planner.) Medicines taken, time of day, and the situation you are in may help you figure out what affects your memory. Keeping track of when the problems are most noticeable can also help you prepare by not planning important conversations or appointments during those times.
•Try not to focus so much on how much these symptoms are bothering you. Accepting the problem will help you deal with it. As many patients have noted, being able to laugh about things you can't control can help you cope. And remember, you probably notice your problems much more than others do. Sometimes we all have to laugh about forgetting to take the grocery list with us to the store.
Monday, September 6, 2010
Radiation Updates
Yikes, I've become quite lazy in keeping my blog up-to-date. It's not like I've been to busy or anything. I have no excuse this time.
Quite a bit has happened in the past month since I last "blogged." My 8th and last chemo treatment was on July 26th. What a happy day that was for me! Don took me to my appointment. It was the last time (hopefully!) either of us would see Grace and the other RNs who have been so good to me, so we stopped and got 2 dozen donuts for the staff. They were all so appreciative. Even though it started as a happy morning for me, since it was my last time getting chemo, it still ended up being a pretty crappy and stressful day at times. First, when we arrived, as we were waiting for a receptionsist so we could sign in, an older gentleman (who had just been through a weekend of 24/7 chemo treatment in the hospital) collapsed in the waiting room. I started freaking out because that's what had happened to me that landed me at Kaiser for 2 days. The nurses ran out to his aid, got his blood pressure, which was very low (just like mine was), and called paramedics to take him back to the hospital. Apparently Kaiser staff is not allowed to transport a patient to the ER. Crazy. Oncology is in the building right next to the main hospital, but now Kaiser is going to pay a $400 Ambulance bill rather than just wheel the guy over themselves.
I really felt for the poor man. I feel it's so unfair for someone his age (he looked old, although later Grace told me he's not really that old) to have to fight cancer. I'm young. Someone like me can handle it. But he just looked so fragile. It made me cry for him. I was so worried and stressed out for the old guy. I saw him later that day as we were leaving, and he was feeling much better and looked much better. His family was so kind to Don and I just because we were concerned for his welfare. A younger gentleman, who appeared to be his son, asked me my name and said, "Vesna, my family will pray for you so that you get better." How kind. I told him, "well, make it short and sweet 'cuz today's my last day of chemo and I'm outta here!" They laughed. Seems the old guy has Lymphoma (non-Hodgkin's) which is a lot tougher to beat.
Going back to treatment, I was a bit anxious because during chemo #7 I had such severe resetlessness. It was like restless leg syndrome only it was systemic - all over. Fortunately, Grace gave me my Benedryl first which mellowed me out. But it was a long wait for the chemo medication to arrive that we didn't start until after 9:00 a.m. Then I was told that Dr. Glowalla, my Oncologist, had also ordered an IV of Potassium Chloride after all my chemo so I was quite irritable that we would probably not be leaving the hospital until 1:00 p.m. PLUS, I was having my PICC Line removed which also made me nervous. I just no longer have the intestinal fortitude to handle gross stuff. And I proved that to be true around 12:30 p.m. after shortly finishing a big, juicy Fatburger. Don had bought me lunch since I was getting hungry. About 10 minutes after finishing my burger, Grace came in to remove the PICC Line. I honestly don't know if it was the stress or actually the chemo, but I gave up that Fatburger quick. Ick; I can never eat a Fatburger again, ever. I get a little green around the gills just thinking about one now.
The PICC Line removal was painless but I could feel a little "stringy" thing crawl out my veins. It's the kind of feeling that gives you goosebumps, and apparently nausea and vomiting as well. I hated the PICC Line experience; all of it. From insertion to removal. It always hurt a little, felt weird and gave me an awful rash. But if I ever had to do chemo again (God forbid) I'd rather have a PICC Line or a Port-a-Cath inserted in me than feel the burn of the chemo medicine in my veins. Don and I left around 1:00 p.m. and I celebrated with a long 2 day nap when I got home. How happy I was just knowing it was all over. Don't get me wrong; it wasn't a horrible experience considering it's saving my life. It's just not one I'd ever care to go through again. And hope to never have to go through, ever.
Fast forward to August 10th when I had my Radiology consult with Dr. Chen. He informed me that I'll be taking a CT scan later that day and they would make my face mask. This mask is used to hold my head in place while the giant radiation machine is "zapping" me in the chest and throat. Apparently, they are also going to radiate my neck where there are surrounding lymph nodes. They want to get everything for good measure. Dr. Chen also informed me of all side effects: sore throat, cough, chest pain, teeth/gum pain, loss of appetite (fat chance), sensitive skin, skin burn, etc. I'm not to shave my underarms (no problem, I haven't grown hair there in months!) and not to use deodorant or perfum/cologne/body spray; anything with alcohol will burn the skin. Side effects start about 2 to 3 weeks after radiation therapy starts.
I then met with a technician who runs a CT scan and then tattooed my chest with permanent dots (really tiny, you can't quite tell they're not freckles) which will be used as markers to line me up under the radiation machine each time. She also used a red marker on other parts of my chest and put round clear adhesive discs over the marks so they don't rub off. She then proceeded to place a very warm, almost hot, white, pliable netting on my face, let it wrap around my neck and head, waited two minutes for it to dry and harden and then pried off my face. That's the mask that will keep me still so radiation doesn't go into my chin or face. Here's a photo of me with the mask on during one of my treatment sessions:
Just like I thought, Silence of the Lambs!!! If you're claustrophobic, this is something you do not want to experience. I've been told some patients lose it. Fortunately for me, I don't think I'm claustrophobic and I'm really good about going to my happy place - McDonald's. French Fries....mmmmm.
On August 19th I had my PET Scan. I still hated it as much as the last time. It's not the machine, it's having to lay with your arms above your head for 20 minutes. They cramp up and it's like Chinese torture. On August 20th, Dr. Chen called me while I was with my husband and family in Mammoth to tell me that the results showed, "no abnormal signs of activity." My family and I celebrated! Here's a photo of us at the Train Concert in the woods at Mammoth. That's me with my "wanna-be Cher with bangs" wig:
That was such a great weekend for us all. We had a lot to be happy about. I'm not cancer-free, but this is the best news one can hope for at this point in the game. I later asked Dr. Chen, when I ran into him during one of my radiation treatments, what exactly "no signs of abnormal activity" meant and he explained that tumors have a metabolism (thus all the weight loss I experienced) and PET scans show active metabolisms as a red glow in the imaging. Before they scan you under the machine, you are injected with a glucose liquid and sit for an hour as it spreads throughout your body. The PET scan lights parts of your internal body that are metabolizing the glucose, so basically several of your organs are lit and any sort of tumor that may be active. When you light up in only expected areas (heart, lungs, stomach, etc), then that means there are no "abnormal" signs of activity. The tumor is "inactive." When I had the tumor, I lit up in my chest between the lungs. This time there was no E.T. phone home. I won't be declared cancer-free for probably another 2 or 3 years but I'm happy with the fact I don't light up where I'm not supposed to.
August 24th I started my radiation therapy. It's 12 treatments, 5 days a week so it's taking a total of almost 3 weeks to do (Labor Day weekend fell on the last week). I've had 9 treatments so far and just started feeling the sore throat and chest pain side effect 4 days ago, right after my 8th treatment. Other than that, it's relatively quick and painless. I do get tired several hours after treatment so I usually take a later afternoon nap. It's kind of screwed up my sleep schedule but that's OK, I'm not back at work yet. The actual treatment lasts about 6 minutes, 5 of which are setting me up and lining me up on the table. One minute is the actual radiation and it's a low dose since the tumor is in a risky spot, between the lungs and in front of the heart. Long term potential side effects are respiratory issues and heart disease. Makes one think the cure is worse than the disease, but if I didn't get chemo and radiation the Hodgkin's would have killed me. Dr. Chen told me they are willing to take the risk. So am I.
As I was saying, actual treatment is 1 minute long with 5 minutes spent prepping me. The longest part of this whole thing is waiting for my name to light up on a board when it's my turn. I've waited anywhere from 3 minutes to 45 minutes:
On the 8th treatment, which was just last Thursday (Sept. 2nd), Angel went with me and was really great about taking a bunch of pictures of the procedure. The Radiologist Raffi and the Technician Chuck (I think that was his name) were really cooperative and even showed Angel how the machine rotates to "zap" me in the chest and in the back. Here are the photos from that day. The last photo is taken with Raffi:
Today is Labor Day so I didn't have treatment. I thought this may be the perfect day to update my blog. I only have 3 more radiation sessions to go so that means I'll be finished this Thursday. THEN NO MORE TREATMENT WHATSOEVER!!!! YAYAYAYAYAYAYAYAAAAAYYYYY!!!! I'm so excited! I'll only have to go in for a test in 3 months to make sure everything is still OK and the cancer isn't rearing it's ugly head again and I'm very optomistic such will be the case. I've been a text book Stage 1B patient. Everything has gone as best as it can be hoped for. Right now I only have a sore throat and, although it is quite irritating and makes it difficult for me to eat my favorite foods, it's nothing compared to other side effects. Honestly though, I should be eating pudding, ice cream and jell-o. Anyone would be thrilled to be on that kind of diet, but I really like none of those things so today I choked down 8 KFC hot wings. Really, how stupid is that? I got one of the most abrasive, crunchy, scratchy meals for lunch. Don't laugh yet, earlier today I purchased all the ingredients to make CRUNCHY tacos for dinner tonight. I think I'll save that for tomorrow night. In the meantime maybe my doctor will prescribe some liquid lidocaine for me so I can do shots it between tacos. Tonight maybe I'll stick to soup. Cream of something soup. Eating those hot wings was a really dumbass idea. I'm pretty sure I'll be trying to choke down another half dozen later this evening. I'm a glutton for punishment and nothing keeps me away from my favorite junk foods.
I still find it quite remarkable that I have a disease that could have killed me. Since Hodgkin's is so treatable, it's easy to forget sometimes that it's still cancer. Instead of worrying whether or not I'm going to get cancer again, or if I'm going to die from this eventually, I guess I just have faith that God has a plan for me. Part of me lives like there's no tomorrow (I will have that extra helping of pie) and part of me lives like I have many more tomorrows (I better fatten up that IRA and 401K). I'm just grateful for every day that I have to enjoy my life, my wonderful husband, my blessed family, my awesome friends, my beautiful home, my God given life.
I have more blogging coming up in the next few months and years. This journey is not over yet.
Quite a bit has happened in the past month since I last "blogged." My 8th and last chemo treatment was on July 26th. What a happy day that was for me! Don took me to my appointment. It was the last time (hopefully!) either of us would see Grace and the other RNs who have been so good to me, so we stopped and got 2 dozen donuts for the staff. They were all so appreciative. Even though it started as a happy morning for me, since it was my last time getting chemo, it still ended up being a pretty crappy and stressful day at times. First, when we arrived, as we were waiting for a receptionsist so we could sign in, an older gentleman (who had just been through a weekend of 24/7 chemo treatment in the hospital) collapsed in the waiting room. I started freaking out because that's what had happened to me that landed me at Kaiser for 2 days. The nurses ran out to his aid, got his blood pressure, which was very low (just like mine was), and called paramedics to take him back to the hospital. Apparently Kaiser staff is not allowed to transport a patient to the ER. Crazy. Oncology is in the building right next to the main hospital, but now Kaiser is going to pay a $400 Ambulance bill rather than just wheel the guy over themselves.
I really felt for the poor man. I feel it's so unfair for someone his age (he looked old, although later Grace told me he's not really that old) to have to fight cancer. I'm young. Someone like me can handle it. But he just looked so fragile. It made me cry for him. I was so worried and stressed out for the old guy. I saw him later that day as we were leaving, and he was feeling much better and looked much better. His family was so kind to Don and I just because we were concerned for his welfare. A younger gentleman, who appeared to be his son, asked me my name and said, "Vesna, my family will pray for you so that you get better." How kind. I told him, "well, make it short and sweet 'cuz today's my last day of chemo and I'm outta here!" They laughed. Seems the old guy has Lymphoma (non-Hodgkin's) which is a lot tougher to beat.
Going back to treatment, I was a bit anxious because during chemo #7 I had such severe resetlessness. It was like restless leg syndrome only it was systemic - all over. Fortunately, Grace gave me my Benedryl first which mellowed me out. But it was a long wait for the chemo medication to arrive that we didn't start until after 9:00 a.m. Then I was told that Dr. Glowalla, my Oncologist, had also ordered an IV of Potassium Chloride after all my chemo so I was quite irritable that we would probably not be leaving the hospital until 1:00 p.m. PLUS, I was having my PICC Line removed which also made me nervous. I just no longer have the intestinal fortitude to handle gross stuff. And I proved that to be true around 12:30 p.m. after shortly finishing a big, juicy Fatburger. Don had bought me lunch since I was getting hungry. About 10 minutes after finishing my burger, Grace came in to remove the PICC Line. I honestly don't know if it was the stress or actually the chemo, but I gave up that Fatburger quick. Ick; I can never eat a Fatburger again, ever. I get a little green around the gills just thinking about one now.
The PICC Line removal was painless but I could feel a little "stringy" thing crawl out my veins. It's the kind of feeling that gives you goosebumps, and apparently nausea and vomiting as well. I hated the PICC Line experience; all of it. From insertion to removal. It always hurt a little, felt weird and gave me an awful rash. But if I ever had to do chemo again (God forbid) I'd rather have a PICC Line or a Port-a-Cath inserted in me than feel the burn of the chemo medicine in my veins. Don and I left around 1:00 p.m. and I celebrated with a long 2 day nap when I got home. How happy I was just knowing it was all over. Don't get me wrong; it wasn't a horrible experience considering it's saving my life. It's just not one I'd ever care to go through again. And hope to never have to go through, ever.
Fast forward to August 10th when I had my Radiology consult with Dr. Chen. He informed me that I'll be taking a CT scan later that day and they would make my face mask. This mask is used to hold my head in place while the giant radiation machine is "zapping" me in the chest and throat. Apparently, they are also going to radiate my neck where there are surrounding lymph nodes. They want to get everything for good measure. Dr. Chen also informed me of all side effects: sore throat, cough, chest pain, teeth/gum pain, loss of appetite (fat chance), sensitive skin, skin burn, etc. I'm not to shave my underarms (no problem, I haven't grown hair there in months!) and not to use deodorant or perfum/cologne/body spray; anything with alcohol will burn the skin. Side effects start about 2 to 3 weeks after radiation therapy starts.
I then met with a technician who runs a CT scan and then tattooed my chest with permanent dots (really tiny, you can't quite tell they're not freckles) which will be used as markers to line me up under the radiation machine each time. She also used a red marker on other parts of my chest and put round clear adhesive discs over the marks so they don't rub off. She then proceeded to place a very warm, almost hot, white, pliable netting on my face, let it wrap around my neck and head, waited two minutes for it to dry and harden and then pried off my face. That's the mask that will keep me still so radiation doesn't go into my chin or face. Here's a photo of me with the mask on during one of my treatment sessions:
Just like I thought, Silence of the Lambs!!! If you're claustrophobic, this is something you do not want to experience. I've been told some patients lose it. Fortunately for me, I don't think I'm claustrophobic and I'm really good about going to my happy place - McDonald's. French Fries....mmmmm.
On August 19th I had my PET Scan. I still hated it as much as the last time. It's not the machine, it's having to lay with your arms above your head for 20 minutes. They cramp up and it's like Chinese torture. On August 20th, Dr. Chen called me while I was with my husband and family in Mammoth to tell me that the results showed, "no abnormal signs of activity." My family and I celebrated! Here's a photo of us at the Train Concert in the woods at Mammoth. That's me with my "wanna-be Cher with bangs" wig:
That was such a great weekend for us all. We had a lot to be happy about. I'm not cancer-free, but this is the best news one can hope for at this point in the game. I later asked Dr. Chen, when I ran into him during one of my radiation treatments, what exactly "no signs of abnormal activity" meant and he explained that tumors have a metabolism (thus all the weight loss I experienced) and PET scans show active metabolisms as a red glow in the imaging. Before they scan you under the machine, you are injected with a glucose liquid and sit for an hour as it spreads throughout your body. The PET scan lights parts of your internal body that are metabolizing the glucose, so basically several of your organs are lit and any sort of tumor that may be active. When you light up in only expected areas (heart, lungs, stomach, etc), then that means there are no "abnormal" signs of activity. The tumor is "inactive." When I had the tumor, I lit up in my chest between the lungs. This time there was no E.T. phone home. I won't be declared cancer-free for probably another 2 or 3 years but I'm happy with the fact I don't light up where I'm not supposed to.
August 24th I started my radiation therapy. It's 12 treatments, 5 days a week so it's taking a total of almost 3 weeks to do (Labor Day weekend fell on the last week). I've had 9 treatments so far and just started feeling the sore throat and chest pain side effect 4 days ago, right after my 8th treatment. Other than that, it's relatively quick and painless. I do get tired several hours after treatment so I usually take a later afternoon nap. It's kind of screwed up my sleep schedule but that's OK, I'm not back at work yet. The actual treatment lasts about 6 minutes, 5 of which are setting me up and lining me up on the table. One minute is the actual radiation and it's a low dose since the tumor is in a risky spot, between the lungs and in front of the heart. Long term potential side effects are respiratory issues and heart disease. Makes one think the cure is worse than the disease, but if I didn't get chemo and radiation the Hodgkin's would have killed me. Dr. Chen told me they are willing to take the risk. So am I.
As I was saying, actual treatment is 1 minute long with 5 minutes spent prepping me. The longest part of this whole thing is waiting for my name to light up on a board when it's my turn. I've waited anywhere from 3 minutes to 45 minutes:
On the 8th treatment, which was just last Thursday (Sept. 2nd), Angel went with me and was really great about taking a bunch of pictures of the procedure. The Radiologist Raffi and the Technician Chuck (I think that was his name) were really cooperative and even showed Angel how the machine rotates to "zap" me in the chest and in the back. Here are the photos from that day. The last photo is taken with Raffi:
Today is Labor Day so I didn't have treatment. I thought this may be the perfect day to update my blog. I only have 3 more radiation sessions to go so that means I'll be finished this Thursday. THEN NO MORE TREATMENT WHATSOEVER!!!! YAYAYAYAYAYAYAYAAAAAYYYYY!!!! I'm so excited! I'll only have to go in for a test in 3 months to make sure everything is still OK and the cancer isn't rearing it's ugly head again and I'm very optomistic such will be the case. I've been a text book Stage 1B patient. Everything has gone as best as it can be hoped for. Right now I only have a sore throat and, although it is quite irritating and makes it difficult for me to eat my favorite foods, it's nothing compared to other side effects. Honestly though, I should be eating pudding, ice cream and jell-o. Anyone would be thrilled to be on that kind of diet, but I really like none of those things so today I choked down 8 KFC hot wings. Really, how stupid is that? I got one of the most abrasive, crunchy, scratchy meals for lunch. Don't laugh yet, earlier today I purchased all the ingredients to make CRUNCHY tacos for dinner tonight. I think I'll save that for tomorrow night. In the meantime maybe my doctor will prescribe some liquid lidocaine for me so I can do shots it between tacos. Tonight maybe I'll stick to soup. Cream of something soup. Eating those hot wings was a really dumbass idea. I'm pretty sure I'll be trying to choke down another half dozen later this evening. I'm a glutton for punishment and nothing keeps me away from my favorite junk foods.
I still find it quite remarkable that I have a disease that could have killed me. Since Hodgkin's is so treatable, it's easy to forget sometimes that it's still cancer. Instead of worrying whether or not I'm going to get cancer again, or if I'm going to die from this eventually, I guess I just have faith that God has a plan for me. Part of me lives like there's no tomorrow (I will have that extra helping of pie) and part of me lives like I have many more tomorrows (I better fatten up that IRA and 401K). I'm just grateful for every day that I have to enjoy my life, my wonderful husband, my blessed family, my awesome friends, my beautiful home, my God given life.
I have more blogging coming up in the next few months and years. This journey is not over yet.
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| Alex & I during lunch with Angel and my new friend and blog follower Liz. |
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| Angel & I on our way to radiation treatment. |
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| Angel & I posing in front of one of the nature scenes in the radiation lab. |
Tuesday, August 3, 2010
Updates
Hi, all. It's been some time since I've updated my blog. Our wireless internet router was down at home and there just wasn't any way I was going to type a blog from my phone. But now we're back up and I have so much catching up to do!
Let's see...well, shortly before I had my PICC line inserted, I actually ended up in the ER because I had 102 degree fever. I've been instructed to check myself in if my temperature goes past 101 degrees because of my weakened immune system. Fever is a since of infection. So I took myself to Kaiser's ER and left Don a message - it was around 8 p.m. in the evening and he was at a meeting. Our friend Dave Blaker brought Don shortly later and even came back with some dinner for Don and me. That was cool. Our friend Ariel, who rents a room from us, came by around 11 p.m. because he had seen a note I had left Don back at the house. He was worried. I felt so touched by everyone's care and concern.
Anyway, after a series of tests, the ER doctor could not find the source of the infection but said there was one brewing because my white blood cell count had gone up to 10.5 to fight it. Hey, my body's still working! Good news! I finally was discharged around 2 a.m. Don and I went home and crashed hard.
I won't go into great detail about Chemo sessions 6 through 8. Suffice it to say, they were not fun. As each treatment occurs, the chemo just accumulates in your body and the side effects become a bit more evident. I still feel I suffered far less that most others in my position. I did get sick, I did get weak, but I did not get discouraged. Although, I did get bummed out from time to time because being sick 24/7 does start to wear on you.
About a week after my 7th chemo session, on July 20, I was still feeling weak and was getting more and more light headed and faint. I had also felt a lump in my right breast so I felt it best to make an appointment with my primary care physician to have it checked out and be referred for a mammogram. Since I was feeling weak, I knew there was no way I could drive myself so Stacy was gracious enough to change her plans to take me. Little did we know we'd both be there for hours. My blood pressure was extremely low, they call it orthostatic hypotension, and I probably was dehydrated due to one of the side effects of chemo. My doctor decided I should be admitted into Telemetry for fluids, potassium and overnight observation. Stacy and I waited in a room for a couple of hours until a bed was available. She called Don to let him know that I was staying overnight - he was on his way.
I have to say that Woodland Hills Kaiser's 4th floor West Wing Telemetry unit is the Hilton Hotels of hospitals. Wow! The second I was wheeled into my private room, the Department Administrator, one Glenn Pascual PhD/MSN, was gliding in and introducing himself, the Charge RN, my RN, my CNA and asking Stacy if she'd like coffee, tea, soda, water...Amazing. I was wired with a wireless heart monitoring device and Glenn informed me that he, the Charge RN and the floor RN each have a pager that alerts them if my device goes off. Impressive. I was finally settled in around 3 p.m. and was now starving. The floor RN, Miyeong, was a sweetheart and snuck me in a donut. Sweet.
Don arrived in the meantime and the nurses gave him a big armchair that converts into a bed so that he could stay overnight with me. How cool was that? I had a couple of visitors later in the evening, Chris Miller (who brought my soup from Jerry's Deli - yum), the Blakers, Ariel (who brought Don dinner from Poquito Mas - the charge nurse thought he was the delivery boy, haha) and John Riley (who we then teased the nurse by saying he was the gardner). Since I had a private room, and the staff liked me (I'm a polite patient) there was no limit to how many visitors I could have or how late they could stay. Cool.
I had to stay a second night because the next morning my blood pressure had actually dropped to 74/41 and now my Hemoglobin was down to 8.1 (normal is between 12 and 14) so the doctor, Dr. Lim, ordered 2 blood transfusions. I was SO bummed out now. I hate hospitals. As nice as the room was, I wanted so desperately to go home. Hospitals just remind you that you are sick. I was getting a bit depressed. Don had spent much of the day with me, between running around for work, that was was crashed on his bed. Once he woke up in the evening, I let all my emotions loose. I cried my heart out. We had a good talk, I was able to share what it's like, and he understood what I needed from him to help me. It was great. Later that evening I had 8 visitors in my room! Clay, Angel, Chris M, Chris W, Stacy, John R, Aaron and Ariel! It was awesome. It cheered me up so much! If you look at the photos, you'll see I'm getting an IV drip of blood...gross.
Let's see...well, shortly before I had my PICC line inserted, I actually ended up in the ER because I had 102 degree fever. I've been instructed to check myself in if my temperature goes past 101 degrees because of my weakened immune system. Fever is a since of infection. So I took myself to Kaiser's ER and left Don a message - it was around 8 p.m. in the evening and he was at a meeting. Our friend Dave Blaker brought Don shortly later and even came back with some dinner for Don and me. That was cool. Our friend Ariel, who rents a room from us, came by around 11 p.m. because he had seen a note I had left Don back at the house. He was worried. I felt so touched by everyone's care and concern.
I won't go into great detail about Chemo sessions 6 through 8. Suffice it to say, they were not fun. As each treatment occurs, the chemo just accumulates in your body and the side effects become a bit more evident. I still feel I suffered far less that most others in my position. I did get sick, I did get weak, but I did not get discouraged. Although, I did get bummed out from time to time because being sick 24/7 does start to wear on you.
About a week after my 7th chemo session, on July 20, I was still feeling weak and was getting more and more light headed and faint. I had also felt a lump in my right breast so I felt it best to make an appointment with my primary care physician to have it checked out and be referred for a mammogram. Since I was feeling weak, I knew there was no way I could drive myself so Stacy was gracious enough to change her plans to take me. Little did we know we'd both be there for hours. My blood pressure was extremely low, they call it orthostatic hypotension, and I probably was dehydrated due to one of the side effects of chemo. My doctor decided I should be admitted into Telemetry for fluids, potassium and overnight observation. Stacy and I waited in a room for a couple of hours until a bed was available. She called Don to let him know that I was staying overnight - he was on his way.
I have to say that Woodland Hills Kaiser's 4th floor West Wing Telemetry unit is the Hilton Hotels of hospitals. Wow! The second I was wheeled into my private room, the Department Administrator, one Glenn Pascual PhD/MSN, was gliding in and introducing himself, the Charge RN, my RN, my CNA and asking Stacy if she'd like coffee, tea, soda, water...Amazing. I was wired with a wireless heart monitoring device and Glenn informed me that he, the Charge RN and the floor RN each have a pager that alerts them if my device goes off. Impressive. I was finally settled in around 3 p.m. and was now starving. The floor RN, Miyeong, was a sweetheart and snuck me in a donut. Sweet.
Don arrived in the meantime and the nurses gave him a big armchair that converts into a bed so that he could stay overnight with me. How cool was that? I had a couple of visitors later in the evening, Chris Miller (who brought my soup from Jerry's Deli - yum), the Blakers, Ariel (who brought Don dinner from Poquito Mas - the charge nurse thought he was the delivery boy, haha) and John Riley (who we then teased the nurse by saying he was the gardner). Since I had a private room, and the staff liked me (I'm a polite patient) there was no limit to how many visitors I could have or how late they could stay. Cool.
I had to stay a second night because the next morning my blood pressure had actually dropped to 74/41 and now my Hemoglobin was down to 8.1 (normal is between 12 and 14) so the doctor, Dr. Lim, ordered 2 blood transfusions. I was SO bummed out now. I hate hospitals. As nice as the room was, I wanted so desperately to go home. Hospitals just remind you that you are sick. I was getting a bit depressed. Don had spent much of the day with me, between running around for work, that was was crashed on his bed. Once he woke up in the evening, I let all my emotions loose. I cried my heart out. We had a good talk, I was able to share what it's like, and he understood what I needed from him to help me. It was great. Later that evening I had 8 visitors in my room! Clay, Angel, Chris M, Chris W, Stacy, John R, Aaron and Ariel! It was awesome. It cheered me up so much! If you look at the photos, you'll see I'm getting an IV drip of blood...gross.
I am truly blessed with such wonderful family and friends. My husband has been such an amazing source of comfort. I don't know how he manages working 60 to 70 hour weeks, having a sick wife and all his other responsibilities. Our friends have been a great source of support for us and I will always be grateful for that.
My last chemo was 8 days ago on Monday, July 26th. Grace, my favorite RN took care of me. It was a rough morning right from the start. We hit traffic at 6:30 a.m. Then when we were in the waiting room for our turn to check in, an older gentleman, Mr West, passed out at check-in. Poor guy had just spent 5 days in the hospital going through aggressive chemo (24/7 - see, others have had it far worse than me) and was back for his outpatient treatment. He appeared to be having the same problems I had the prior week so I started freaking out a little. I felt so bad for someone his age to have to go through all this. It's just not fair. I'm young and relatively healthy. I can handle it. But why does it have to happen to older people? I see several geriatric patients whenever I'm there and it just breaks my heart. Sometimes life just doesn't seem fair.
I finally got called in for treatment and it went pretty seamlessly. I didn't have body aches like I had during treatment #7 so I was relieved about that. Around 11:30 a.m. I was getting hungry so Don ran out and got me Fatburger. After chemo I got a small IV bag of potassium, per my Nephrologist's orders, and then Grace got ready to take the PICC Line out. I got squeemish. Bad. So bad I wish I hadn't had that Fatburger. I threw up my lunch seconds after she pulled the line out. I no longer have the constitutional fortitude to tolerate needles, blood, pain, etc. Oh well, 1 barf attack for 4 months of chemo is not a bad record.
So now it's Tuesday, August 3rd and I'm recovering nicely from my last treatment. I slept for the first 24 hours, but started feeling much better 2 days later. Don went on a camping trip with the guys for our friend's bachelor party and I was glad to see him take a vacation from everything. He came home Sunday late afternoon and just in time apparently, because yesterday I started feeling sick. I'm not much better today. I've learned that you just never know when you're going to be sick in the 2 week period between treatments. The good news is that I no longer need chemo treatment! I get the month of August off to recover and then start radiation in September. I hear radiation is a walk in the park compared to chemo.
Quite honestly, with the love and tremendous support of family and friends, this whole experience has been quite tolerable. I won't say it's been easy because it hasn't. I won't say I haven't been sad at times because I have. But I will say that, despite the downfalls and sometimes hard days, I've been a relatively happy cancer patient. And that's because I have not had to do anything alone.
Thursday, July 1, 2010
PICC Line Insertion
It is last week when I finally decide to tell my Oncologist about my vein pain because it hasn't gone away, even 10 days after chemo. We agree that I should have a PICC Line inserted and I meet with the Infusion RN, Mirna, to have my veins examined to determine if she can access them. Everything's a go. The veins are accessible, they're just in pain. Mirna explains she has seen this many times before. The veins don't have to collapse before you experience the burning pain. I schedule to have the procudure done the next day. Now I'm nervous. Up until now, I've been able to handle all the poking and prodding throughout my body, but now that pain is becoming a constant companion, I'm starting to fear needles.
So I call Angel, pay her a visit on my way home, and ask if she'll accompany me. Yes! We decide to make a day of it since she has a doctor's appointment in L.A. It's perfect; we go to her appointment, shop at the Beverly Center, have lunch and head over to Kaiser. My RN Mirna, who will be performing the procedure, is sweet and flashes me the biggest smile when I arrive. Her kindness puts me at ease. Everyone at the Infusion Center is nice.
We go to the private "surgical" room and everything is prepped like I will have surgery. I'm wondering why I have a paper blanket draped over me, why Mirna is donning a paper gown, why there's a lot of "coverage" everywhere. Come to find out, when they access your vein to insert the PICC line, a lot of blood squirting can occur. It's pretty gnarly. Mirna has warned Angel of this when I was in the bathroom earlier.
The procedure is about to start and Angel holds my hand as we watch some celebrity gossip show on the TV set in front of the bed. Mirna finds the vein and startings running a blue "tubing" through the vein, up my arm, over across my chest and down my chest to the superior vena cava. While she is "wiring" me down my chest, she has me turn my head to face left so that the tubing doesn't go up my neck. Freakish. I'm starting to think I don't have the intestinal fortitude to handle procedures so much anymore. Once the PICC line is in place, she then flushes the line with fluid and has me listen for bubbles. If I hear bubbles, then the line went up my neck. Thank God, no bubbles.
During this whole procedure I am instructed to watch TV or chat with Angel and not look at the work being done. Once completed, I turn my head and witness the bloodbath that has occurred. There is blood all over my forearm and hand, puddles on the floor and splatter all over Mirna's gown. Wow! It looks like I've bled about a 1/2 pint. I get all excited now and ask Angel to take pictures of the scene. She refuses to participate in my now macabre ritual of photographically documenting my experience with cancer. I finally persuade her to hand me her phone so I can shoot a couple of frames. After several failed attempts, Angel finally jumps in and starts to point and shoot. But by now Mirna has quickly wiped up most of the blood so we only get her gown and the floor. Oh well, that'll do.
The procedure is complete and Angel leaves for her evening Pepperdine class in L.A. We've pre-arranged that Tina will pick me up on her way home from work. It works out perfectly. Angel leaves, I go to x-ray to make sure the PICC line is inserted properly and Tina picks me up shortly after I'm done.
It's been a long day. I'm exhausted. I've not been out and about this many hours in one day for a while and I'm ready for bed by 7:00 p.m. I'm glad the day is over and I'm feeling blessed to have such good women friends in my life.
So I call Angel, pay her a visit on my way home, and ask if she'll accompany me. Yes! We decide to make a day of it since she has a doctor's appointment in L.A. It's perfect; we go to her appointment, shop at the Beverly Center, have lunch and head over to Kaiser. My RN Mirna, who will be performing the procedure, is sweet and flashes me the biggest smile when I arrive. Her kindness puts me at ease. Everyone at the Infusion Center is nice.
We go to the private "surgical" room and everything is prepped like I will have surgery. I'm wondering why I have a paper blanket draped over me, why Mirna is donning a paper gown, why there's a lot of "coverage" everywhere. Come to find out, when they access your vein to insert the PICC line, a lot of blood squirting can occur. It's pretty gnarly. Mirna has warned Angel of this when I was in the bathroom earlier.
The procedure is about to start and Angel holds my hand as we watch some celebrity gossip show on the TV set in front of the bed. Mirna finds the vein and startings running a blue "tubing" through the vein, up my arm, over across my chest and down my chest to the superior vena cava. While she is "wiring" me down my chest, she has me turn my head to face left so that the tubing doesn't go up my neck. Freakish. I'm starting to think I don't have the intestinal fortitude to handle procedures so much anymore. Once the PICC line is in place, she then flushes the line with fluid and has me listen for bubbles. If I hear bubbles, then the line went up my neck. Thank God, no bubbles.
During this whole procedure I am instructed to watch TV or chat with Angel and not look at the work being done. Once completed, I turn my head and witness the bloodbath that has occurred. There is blood all over my forearm and hand, puddles on the floor and splatter all over Mirna's gown. Wow! It looks like I've bled about a 1/2 pint. I get all excited now and ask Angel to take pictures of the scene. She refuses to participate in my now macabre ritual of photographically documenting my experience with cancer. I finally persuade her to hand me her phone so I can shoot a couple of frames. After several failed attempts, Angel finally jumps in and starts to point and shoot. But by now Mirna has quickly wiped up most of the blood so we only get her gown and the floor. Oh well, that'll do.
The procedure is complete and Angel leaves for her evening Pepperdine class in L.A. We've pre-arranged that Tina will pick me up on her way home from work. It works out perfectly. Angel leaves, I go to x-ray to make sure the PICC line is inserted properly and Tina picks me up shortly after I'm done.
It's been a long day. I'm exhausted. I've not been out and about this many hours in one day for a while and I'm ready for bed by 7:00 p.m. I'm glad the day is over and I'm feeling blessed to have such good women friends in my life.
Thursday, June 17, 2010
Chemo Days #4 and #5
Well, it's been about a month since I last blogged. Since my last posting I've had my 4th and 5th series of chemo. These have been a little harder to handle and there's not so much "festivity" on the Oncology floor at Kaiser.
June 1st is my 4th session. Don is to take me and Stacy will join us, but unfortunately Don can't get out of work. Thankfully, Stacy graciously accepts the responsibility of taking me to chemo herself.
When it was first discovered that I have cancer, and we were told I have to have chemo every other week, Don had insisted he will take me to every single appointment. I insisted that he not be so adamant and that it's OK for someone else to take me from time to time because I figure he'll be bored out of his skull after the first round of chemo. I didn't want to be a "burden" on my husband.
I now say screw that. It's about me this time. Not about how someone else may feel about taking care of me. I'm no longer going to predict the future and tell you that you'll wish you hadn't offered to help. Especially my husband. If you ask me, I'll tell you that it's important that he be there. Of course, there may be some unfortunate situations where he can't be there, shit happens, but if you give me a choice I will chose for him to be there every time.
This is one time that he can't be there. I am disappointed, yes, but not mad at him. His hands are tied. Fortunately, since we had planned on Stacy going with us, she is able to step in for Don. And what a great stand-in she is. From the instant I get in her car, we are chatting away. Talking about anything and everything. So much so that we don't notice the huge traffic jam in front of us until we are thick in the middle of it. But we pay no mind and keep talking. We've left the house early at 6:15 a.m. for such instances like this to occur so we're not stressed for time.
However, we eventually start to realize that in 45 minutes we have gone less than 3 miles. It's a horrific accident. There are 3 helicopters looming over the Hollywood freeway. Just past the Highland exit 3 cars met by accident. Apparently there is a fatality involved because as we finally inch past the scene, there are firemen holding a large yellow tarp around a small SUV. I say a quick prayer (and an act of contrition because 2 miles back I was bitching about idiot drivers in L.A.).
We eventually get to Kaiser hospital 5 minutes before my appointment. Thank goodness we left early that morning. I once again am lucky and get a private room. I also get my favorite RN, Grace. Stacy watches with wonder as I get shot up with cocktails and even comes to my aid, hunting down my nurse, when the burning veins overcome me. I've been injected with Benadryl by the time I get my Dacarbazine IV drip so I am nodding off as Alex pays a visit. I can barely talk now so I sleep. Finally, by 12 noon I am all done and Stacy and I head back to the valley to have lunch at Nicola's. I'm famished and order a big salad, side of spaghetti with marinara, and eat several generous helpings of the complimentary flat bread. My belly is happy and Stacy takes me home. Thank you, Stacy!
Don comes home that evening and I let him know that yes, it is important to me that he be there every time. I feel safe when he's there. I feel protected, loved and cared for. Yes, I do need him there. The chemo is starting to get scary and I need my hero.
June 14th is my 5th session. Don takes me. We leave the house early, 6:30, in case there may be traffic but it's smooth sailing. We stop at the nice new cafeteria in the main hospital for breakfast of which mine consists of 6 strips of bacon and a 1/2 cup of scrambled eggs. I could have had all bacon but didn't want to look like an animal. We go upstairs to Oncology to sign in around 7:45 a.m. and they call my name, take my vitals and assign me to a room fairly quickly. And my appointment wasn't until 9:00 a.m.! But Grace had told me the last time to just show up early, and once again she is my RN!
Grace inserts the IV into my right arm and almost instantly there is pan and soreness. I keep insisting that it's bothersome so she finally removes it and sticks me in the left arm. As soon as the saline IV drip starts, my veins start to hurt...and that's just saline. Grace gets me a heating pad to put on my arm so the veins open up. It helps and she pushes the first 3 chemos into me. It's quite uncomfortable. Then the dreaded Dacarbazine comes along and once the IV starts dripping into me I am in searing pain. My veins are cooked and screaming. I think this is the first time I cry. We slow the drip tremendously and Don and I are finally out of there 2 hours later.
We go home, I go to bed and sleep for two days.
June 1st is my 4th session. Don is to take me and Stacy will join us, but unfortunately Don can't get out of work. Thankfully, Stacy graciously accepts the responsibility of taking me to chemo herself.
When it was first discovered that I have cancer, and we were told I have to have chemo every other week, Don had insisted he will take me to every single appointment. I insisted that he not be so adamant and that it's OK for someone else to take me from time to time because I figure he'll be bored out of his skull after the first round of chemo. I didn't want to be a "burden" on my husband.
I now say screw that. It's about me this time. Not about how someone else may feel about taking care of me. I'm no longer going to predict the future and tell you that you'll wish you hadn't offered to help. Especially my husband. If you ask me, I'll tell you that it's important that he be there. Of course, there may be some unfortunate situations where he can't be there, shit happens, but if you give me a choice I will chose for him to be there every time.
This is one time that he can't be there. I am disappointed, yes, but not mad at him. His hands are tied. Fortunately, since we had planned on Stacy going with us, she is able to step in for Don. And what a great stand-in she is. From the instant I get in her car, we are chatting away. Talking about anything and everything. So much so that we don't notice the huge traffic jam in front of us until we are thick in the middle of it. But we pay no mind and keep talking. We've left the house early at 6:15 a.m. for such instances like this to occur so we're not stressed for time.
However, we eventually start to realize that in 45 minutes we have gone less than 3 miles. It's a horrific accident. There are 3 helicopters looming over the Hollywood freeway. Just past the Highland exit 3 cars met by accident. Apparently there is a fatality involved because as we finally inch past the scene, there are firemen holding a large yellow tarp around a small SUV. I say a quick prayer (and an act of contrition because 2 miles back I was bitching about idiot drivers in L.A.).
We eventually get to Kaiser hospital 5 minutes before my appointment. Thank goodness we left early that morning. I once again am lucky and get a private room. I also get my favorite RN, Grace. Stacy watches with wonder as I get shot up with cocktails and even comes to my aid, hunting down my nurse, when the burning veins overcome me. I've been injected with Benadryl by the time I get my Dacarbazine IV drip so I am nodding off as Alex pays a visit. I can barely talk now so I sleep. Finally, by 12 noon I am all done and Stacy and I head back to the valley to have lunch at Nicola's. I'm famished and order a big salad, side of spaghetti with marinara, and eat several generous helpings of the complimentary flat bread. My belly is happy and Stacy takes me home. Thank you, Stacy!
Don comes home that evening and I let him know that yes, it is important to me that he be there every time. I feel safe when he's there. I feel protected, loved and cared for. Yes, I do need him there. The chemo is starting to get scary and I need my hero.
June 14th is my 5th session. Don takes me. We leave the house early, 6:30, in case there may be traffic but it's smooth sailing. We stop at the nice new cafeteria in the main hospital for breakfast of which mine consists of 6 strips of bacon and a 1/2 cup of scrambled eggs. I could have had all bacon but didn't want to look like an animal. We go upstairs to Oncology to sign in around 7:45 a.m. and they call my name, take my vitals and assign me to a room fairly quickly. And my appointment wasn't until 9:00 a.m.! But Grace had told me the last time to just show up early, and once again she is my RN!
Grace inserts the IV into my right arm and almost instantly there is pan and soreness. I keep insisting that it's bothersome so she finally removes it and sticks me in the left arm. As soon as the saline IV drip starts, my veins start to hurt...and that's just saline. Grace gets me a heating pad to put on my arm so the veins open up. It helps and she pushes the first 3 chemos into me. It's quite uncomfortable. Then the dreaded Dacarbazine comes along and once the IV starts dripping into me I am in searing pain. My veins are cooked and screaming. I think this is the first time I cry. We slow the drip tremendously and Don and I are finally out of there 2 hours later.
We go home, I go to bed and sleep for two days.
Tuesday, May 18, 2010
Chemo Day - #3
Well, yesterday was round 3 of chemo. It started off as any other chemo day. Whenever we have to drive to Kaiser, there's always some chump who doesn't know how to drive and causes an accident that backs up traffic for hours. Typical L.A. commute. Don and I decide that we will just leave the house 6:30 a.m. no matter what time I have an appointment.
We manage to make it just in time and I check in at 8:45 a.m. This day I share a room with another woman and her accompanying husband. They're not very social, but they also look tired and bored with the routine. I overhear that this is her 12th treatment. Wow. I decide not to pry but I'm so curious to find out what cancer she has. I'm curious about everyone's cancer at this place. But most patients look miserable, walk around like zombies and don't even acknowledge you. This place is depressing. But I have to remind myself that everyone here has cancer; this is not church where we sing hallelujah and shake our tambourines. C'mon people! Praise the Lord!
We manage to make it just in time and I check in at 8:45 a.m. This day I share a room with another woman and her accompanying husband. They're not very social, but they also look tired and bored with the routine. I overhear that this is her 12th treatment. Wow. I decide not to pry but I'm so curious to find out what cancer she has. I'm curious about everyone's cancer at this place. But most patients look miserable, walk around like zombies and don't even acknowledge you. This place is depressing. But I have to remind myself that everyone here has cancer; this is not church where we sing hallelujah and shake our tambourines. C'mon people! Praise the Lord!
Monday, May 10, 2010
Crazy Sexy Cancer Tips
"You want to make God laugh? Tell her your plans!"
That's a quote on page 2 of this incredible book titled Crazy Sexy Cancer Tips. My oldest and childhood best friend Andrea from my elementary school years, who now lives in Colorado (lucky girl) with her husband and two beautiful boys, sent me a care package that I received this afternoon. Nestled in the USPS shipping box was this book. The care package also came with a small tin that says, Daily Dose of Inspirations." Inside are 30 little pill capsules and inside each capsule is a teeny weeny rolled up piece of blue paper that has a quote. For example, the dose I took today read, "you gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do." Wow, how awesome is that? And how did they get these tiny rolled up papers crammed into an actual pill capsule?
That's a quote on page 2 of this incredible book titled Crazy Sexy Cancer Tips. My oldest and childhood best friend Andrea from my elementary school years, who now lives in Colorado (lucky girl) with her husband and two beautiful boys, sent me a care package that I received this afternoon. Nestled in the USPS shipping box was this book. The care package also came with a small tin that says, Daily Dose of Inspirations." Inside are 30 little pill capsules and inside each capsule is a teeny weeny rolled up piece of blue paper that has a quote. For example, the dose I took today read, "you gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do." Wow, how awesome is that? And how did they get these tiny rolled up papers crammed into an actual pill capsule?
Tuesday, May 4, 2010
C day - #2
So yesterday was my second chemo session. This day was unlike no other and it has now set the bar for all future chemo sessions. My fear is that we will never be able to duplicate this day. I laughed so much I nearly bust a gut. Never expected to say that about chemo, but it was very much the case!
Our friend Angel joins Don and I for the ride. Lucky for us she is really easy going about it all and very accommodating because there are delays throughout the day. No problem, she says. She'll just reschedule her Pilates lesson for the next day. That's cool. Already having to do something I don't like, in a hospital no less, I don't need the stress of having to make sure those around me are OK. Angel is the perfect tag along guest.
Our friend Angel joins Don and I for the ride. Lucky for us she is really easy going about it all and very accommodating because there are delays throughout the day. No problem, she says. She'll just reschedule her Pilates lesson for the next day. That's cool. Already having to do something I don't like, in a hospital no less, I don't need the stress of having to make sure those around me are OK. Angel is the perfect tag along guest.
Wednesday, April 21, 2010
R&R
I think, when all of this is over, I want to spend a weekend at a spa somewhere in Santa Barbara County's wine country, where I will indulge in facials, massages, mud baths, etc, and drink wine til I'm 3 sheets to the wind.
My profile says I was born the year of the monkey. That explains a lot.
My profile says I was born the year of the monkey. That explains a lot.
Tuesday, April 20, 2010
C day - #1
OK, yesterday's post was edited today and somehow it now has today's date.
Anyway, it was my first day of chemo today, April 19th. I check in 8:30 a.m. and get a private room. I thought about bringing my laptop with me so I could journal during treatment but after experiencing the ache and burning in my arm with the IV, I doubt I'll be multi-tasking much. That's unfortunate, because today I learn that after a few treatments, the chemo will have an effect on my speech, thinking, memory, etc, etc. The Infusion RN continues ad nauseum about certain and potential side effects. She's a very kind RN, but what she is saying are words that are not designed to make me feel comfortable. She ends the list of crazy side effects and then instructs me to practice NEW START: Nutrition, Eating. Walking, Sunshine (indirect, I'm like a Vampire now), Temperance, Air, Rest, and I can't remember what the last "T" is for. Must be the chemo working already.
Pyung, she's the RN, inserts an IV into my wrist and starts with a saline IV drip that will push the "medicine" through gently. They won't be inserting a port in me that can be worn 24/7. It's for patients that have aggressive cancers and need the chemo more frequently. I'm only going every other Monday. I'm pretty fortunate. This makes me think of a friend's mom who is receiving treatment for cancer right now and has a port. Wow, my heart goes out to her.
Anyway, it was my first day of chemo today, April 19th. I check in 8:30 a.m. and get a private room. I thought about bringing my laptop with me so I could journal during treatment but after experiencing the ache and burning in my arm with the IV, I doubt I'll be multi-tasking much. That's unfortunate, because today I learn that after a few treatments, the chemo will have an effect on my speech, thinking, memory, etc, etc. The Infusion RN continues ad nauseum about certain and potential side effects. She's a very kind RN, but what she is saying are words that are not designed to make me feel comfortable. She ends the list of crazy side effects and then instructs me to practice NEW START: Nutrition, Eating. Walking, Sunshine (indirect, I'm like a Vampire now), Temperance, Air, Rest, and I can't remember what the last "T" is for. Must be the chemo working already.
Pyung, she's the RN, inserts an IV into my wrist and starts with a saline IV drip that will push the "medicine" through gently. They won't be inserting a port in me that can be worn 24/7. It's for patients that have aggressive cancers and need the chemo more frequently. I'm only going every other Monday. I'm pretty fortunate. This makes me think of a friend's mom who is receiving treatment for cancer right now and has a port. Wow, my heart goes out to her.
Monday, April 19, 2010
The Day Before Treatment
It's now Sunday, April 18th and the day before my first round of chemo. I'm a little nervous. Fortunately, we're having a barbeque in the yard later this afternoon so I will have a good amount of distraction to keep me from thinking about tomorrow. At least until bedtime. Then I'm most certain I will not be sleeping. That's O.K. I can sleep during the chemo.
Since the day of the final diagnosis, it’s been non-stop doctor appointments or tests. April 8th I met with the radiation doctor. He has all kinds of interesting information to share with me, much I have already forgotten. One of the few things I don’t forget are that cancer treatment puts you at risk for developing a secondary cancer. Keep in mind that we are all at risk for developing cancer. The only people who have immunity from cancer are already dead. I’ll take my chances with that secondary cancer, thank you very much. Because I’ve already been diagnosed with a cancer, I will now have annual check-ups. I’m good with that.
Since the day of the final diagnosis, it’s been non-stop doctor appointments or tests. April 8th I met with the radiation doctor. He has all kinds of interesting information to share with me, much I have already forgotten. One of the few things I don’t forget are that cancer treatment puts you at risk for developing a secondary cancer. Keep in mind that we are all at risk for developing cancer. The only people who have immunity from cancer are already dead. I’ll take my chances with that secondary cancer, thank you very much. Because I’ve already been diagnosed with a cancer, I will now have annual check-ups. I’m good with that.
Saturday, April 17, 2010
The Discovery...story continues
The story continues...
It's April 6, 2010 and I've just learned I have Hodgkin's Lymphoma. O.K., what next? Now I'm going to be subjected to an assortment of tests before I can start chemo. The first one is performed right there in the little exam room. Alex goes back to work while Don and I watch a lab tech roll in 2 carts with odd instruments. These two carts have Don trapped in his seat with no way to get out. He offers to stand in the corner but Dr. Glowalla insists he remain seated, that it's better. Now we know why.
A bone marrow aspiration and biopsy is something I hope to never experience in my life again. It's something I would hope for even my enemies (if I had any, I don't think so) to never experience. Bone marrow tests are done to the pelvic bone accessible on the lower back. First, the doctor will insert a needle into the bone marrow and remove a small amount of bone fluid. Then he removes a small amount of bone marrow tissue through a larger needle. Now here's the kicker: he has to go through BONE to get to the bone marrow. How does he do that? By bearing all his body weight onto the needle that's going through my back and bone!!!!!!!!!! I thought I was going to die.
It's April 6, 2010 and I've just learned I have Hodgkin's Lymphoma. O.K., what next? Now I'm going to be subjected to an assortment of tests before I can start chemo. The first one is performed right there in the little exam room. Alex goes back to work while Don and I watch a lab tech roll in 2 carts with odd instruments. These two carts have Don trapped in his seat with no way to get out. He offers to stand in the corner but Dr. Glowalla insists he remain seated, that it's better. Now we know why.
A bone marrow aspiration and biopsy is something I hope to never experience in my life again. It's something I would hope for even my enemies (if I had any, I don't think so) to never experience. Bone marrow tests are done to the pelvic bone accessible on the lower back. First, the doctor will insert a needle into the bone marrow and remove a small amount of bone fluid. Then he removes a small amount of bone marrow tissue through a larger needle. Now here's the kicker: he has to go through BONE to get to the bone marrow. How does he do that? By bearing all his body weight onto the needle that's going through my back and bone!!!!!!!!!! I thought I was going to die.
Friday, April 16, 2010
The Discovery
I have a mission; at least for the next 6 months. My mission is to recover from Hodgkin's Lymphoma with the grace and dignity of those who have gone before me.
March 25th, 3 days after my 42nd birthday, I checked myself into Kaiser Woodland Hill's ER at 8:00 a.m. complaining of excruciating flank pain. It all started around 5:30 a.m. as my husband left for work. I thought the pain would go away but it got increasingly worse, so I decided to get some medical intervention. I'm not one to plug up a hospital's busy ER with minor complaints, so I made sure to wait for the pain to be unbearable. Smart. Fortunately for me, Kaiser's ER wasn't busy so I was admitted within 15 minutes of arrival.
March 25th, 3 days after my 42nd birthday, I checked myself into Kaiser Woodland Hill's ER at 8:00 a.m. complaining of excruciating flank pain. It all started around 5:30 a.m. as my husband left for work. I thought the pain would go away but it got increasingly worse, so I decided to get some medical intervention. I'm not one to plug up a hospital's busy ER with minor complaints, so I made sure to wait for the pain to be unbearable. Smart. Fortunately for me, Kaiser's ER wasn't busy so I was admitted within 15 minutes of arrival.
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