Archive for the ‘Recovery’ Category
A letter to my father
Posted on: May 5, 2011
Helping parents through cancer recovery is never easy. My sister and I were helping my step-mother to persuade my father to keep an appointment with a specialist at IU Medical Center. My father wants the entire thing behind him – hoping that he can will away the side effects. I wrote the following to him as a last ditch effort. My sister recommended I post it in its entirety since parts of it may be useful to others in the same situation.
——
After cancer treatments end, we all want one thing – to put the entire experience behind us and immediately get on with our lives.
There are a few hours a day where this plan works flawlessly. We take advantage of these valuable hours.
Each day, I am also hit with the fact that this is not yet behind me, and no force of will can overcome things like hot flashes and post-chemotherapy fatigue. These side effects are so potent, it is easy to forget how debilitating they are once they have passed and we feel OK again.
Besides, this “force of nature” comes and goes like the weather… there is no way to forecast when a bout of side effects will begin, the intensity of this episode, nor when I’ll feel better again. This is a fact, whether I like it or not.
There is only one way to continue having normality in our lives during this long recovery period. We need strategies to insure we can accomplish what we want while having back up available 24/7 in case of inclement side effects.
I’ve chosen not to drive a car for the last year and a half,since I so often feel too “out of it” to drive safely. I’m doing this, not because I don’t think I am capable of driving some times, but because I know I can get fatigued in the blink of an eye and could endanger others or myself while attempting to drive home. I’m lucky enough to live near public transit, so I have a driver available for me any time of day or night. When I’m really bad, I take a cab.
The solution they offer for people who depend more heavily are cars, it is recommended they get an aide to help get around. Many of the patients I see visiting the cancer center have wonderful aides who help them get around. I’ve seen so many who have unusual problems with balance and the aides appear superb at helping when necessary, while staying out of the way when they are not needed. These patients appear happy and relaxed, knowing that they can come and go anywhere as they want, when they want, without having to worry about getting home safely.
We have to be smarter during this recovery period and learn to identify when are good times to be productive and when we should be resting. In a matter of minutes I can go from a good, energetic state to fatigued. A dark cloud blows into my mind and there is nothing I can do to shield myself from it. I’ve learned the early warning signals – which often are surprisingly “I cannot believe I’ve been feeling so good for three hours!” then moments later the cloud starts forming. Just yesterday I had this thought “I’m feeling so great..” as I was heading to the subway, only to be dog tired by the time I walked into my home and fell into bed to sleep.
When I follow the lead of my body, I get more good hours in the day. I woke up an hour later, totally refreshed with “bonus” good hours for the day.
When I fight the fatigue, eat sugar or caffeine for more energy, it effectively ruins the rest of my day in addition to preventing a decent night’s sleep. I fought this every way possible back in 2001/2002 and was miserable. Fatigue is often accompanied by depression and a feeling this will never end and we can never again be what we once were. We need to learn that those thoughts are always the fatigue talking.
After 4 weeks of following this plan, I finally started getting good hours that actually felt like I was full strength. From the chemotherapy, it took me more like six months to begin to get any hours that were close to feeling normal. I still had decent hours, but never full strength. The worst time is always the stretch of time while we are feeling “less than” we were mentally and physically.
It does get better. The changes are gradual and there can always be a stretch of days where it feels like all progress has been lost. It has not, you body is sending you signals in hopes you will work with it. Our brain power is not gone, it is occupied healing and rebalancing our internal chemical state. There are thousands of biochemical processes at work inside us each minute we are alive. When they are running smoothly, the don’t call upon the subconscious much for supervision. While they are healing, much of our subconscious is occupied with problem solving and healing, which is why we feel tired, like we have been thinking too hard.
I am taking advantage of some of the extra services that come with along with top notch medical centers, like the one at IU. The obvious is the quality of the doctors. I just read that Micheal Douglas’s condition was not seen by his regular doctors, but was quickly identified when he happened to be in Montreal and saw an oncology specialist at the very hospital I go to. He went to Sloan-Kettering for treatment.
You have made generous offers to me, to make sure I am getting the best medical care in the world to insure that my cancer does not come back or spread. Zonda has been going to specialists in Naples and sometimes even as far away as NYC, at Nancy’s request, for several problems. IU Medical Center is one of these top centers, and it seems to me that starting there right away is the smartest thing you could do. You are setting an example for the rest of us on how to take care of ourselves so that we can live long, healthier lives.
Going to these specialists is always difficult. There are questions – am I wasting my time? does the doctor even care if I come or not? We always have to wait too long in the waiting rooms and the time with the doctors is always too short. Yet there are two things that we need from the doctors – we need the insight they have as consultants to our health, specialists who have treated and saved hundreds of patients. We also need to have a doctor whom we respect and who we feel is giving us his all. You have always taught us the importance and advantages of excellence.
I cannot tell you how strongly Nancy wants you to keep that appointment with Dr. Foster – she wants him to explain for all of us several big questions
1. Did you have cancer?
2. Did you need this treatment?
3. Did it help you?
4. Is this new medicine for side effects the right thing to be taking?
Once “in the system” patients have access to all sorts of free services. There is something called a “pivot nurse” at my hospital. Someone with this sort of function exists at most cancer centers – a nurse who is assigned to each patient who wants or needs more information and questions about the details of treatments and side effects. How to get one of these aides to give more freedom to your life and how they are paid for, and a number to call any time to get questions answered immediately.
Don’t tell Nancy I wrote this, but she has called me at least six times while I am writing this, attempting to get me to say “the right thing” to get to you to go Dr. Foster. It is that important to her. I know you have to make your own decisions and just how much you want to put all this behind you and get on with your life. The side effects will be with you for another five months with or without your permission.
You have a choice:
these side effect can be your enemy constantly sneaking up and attacking you
OR
Side effects can be like the weather, something that exists but does not take over your life because you know when to wear a coat or take an umbrella, you are prepared so you can go on with your life and do interesting things in the good hours.
Know that we all love you and want the best for you. I hope you want the best for yourself as well – you are worth it.
Post-Radiation 1 Month
Posted on: April 27, 2011
- In: Radiation | Recovery
- 4 Comments
This morning I felt the first inkling of normalcy in many, many months. Finally in the last few days my need for sleep is decreasing and the best is that I woke up actually feeling normally energetic and it lasted for several hours.
It has now been four weeks since I finished radiation. The first week was the worst, where I was sleeping up to 15 hours a day, and never able to lose that “pre-coffee” grogginess that never went away. I can clearly compare last week with this week, and I am doing more with less repercussions and simultaneously not needing as much sleep.
That said, I’m still sleeping 9+ hours at night with at least 1-2 hours of naps. Last night I kept working until 11PM which was fun to feel so good all evening. I was afraid I’d be paying the price today, but instead I felt good after a more normal night’s sleep.
This week, I had a day out shopping for an hour or so, followed by a small walk on the beach and lunch. Last week, I was wiped for two days following such a trip. This week, I did not have to stay quiet and pay the price for going out. Instead, I could continue, even feeling a bit better. I cannot say how thrilled I am to see that the worst of this is behind me.
One person had recommended that I forgo so much sleep – that drinking one of these energy drinks can easily take the place of sleep. That might be true for finals week at school, but is not the solution for medical fatigue. Our bodies need the rest to recover and there is no way around it.
My skin is doing fine. Under my arm still feels sore, even though the skin now looks normal. I can tell if I have waited to long to put on more lotion. It is tolerating my going into the swimming pool regularly without any problems. On good days, I’m still doing about a half hour of laps in the pool with a kick board. It feels great to be exercising, even at this gentle pace.
I know there will still be some days better than others, but it is nice to see some real improvement!
Adaptation to side effects
Posted on: April 19, 2011
I’ve had a dual image in my mind of being in Florida – one, where I was once again in the loving care of my mother, recovering. The other image, is my usual self – helping my mother do things she needs done – with me being energetic and industrious. The reality is somewhere in between, so I feel almost startled that the same fatigue I felt up drizzly, cold north, still was in effect, here in the hot, summery weather.
The visit has been laced with phone calls about my father’s health issues back in Indiana, reminding me the importance of learning about side effects and enough medical information to figure out ways to help get through the toughest parts of treatments.
He is suffering from periods of hot flashes and also times when he is too cold. All painful situations have a beginning, middle and end. This is so hard to remember when you are in the midst of extreme discomfort. One way to deal with it is to distance yourself from the sensation – as they used to teach expectant mothers in Lamaze classes. Start by timing the periods of discomfort so you can get an idea if it lasts 5 minutes or an hour. Each time the sensation creeps up… learn to notice the signs and name the problem “I’m having hot flashes, a side effect of that medicine. They usually last for xxx minutes.” Once that is said, look at a clock and know you just need to have something to do for that amount of time, until it passes. Keep trying different things until you find one or two things that seem to help.
We all do this with so many other things in our lives, but when we feel bad, it always feels like that one moment will last for the rest of our days. The more we observe the sensation, the stronger it feels. If you give it your undivided attention, it can feel so overpowering that it triggers fear for your life… this triggers the fight or flight system in your body, flooding your system with adrenaline – this can easily lead to anger and other normal responses to crisis. Our minds strive to explain our emotions – so we get upset over any easy target – sometimes trivial things, other times old issues. Either way, your tension increases and both you and those around you feel at wits end.
These are the two choices – one provides a sense of control of life, the other just the opposite.
This evening I met one of my mother’s friends who has been in and out of cancer treatment for a decade. She is once again in weekly chemotherapy, but is continuing her weekly dinner with the girls and playing hand bells at her church. Over time, she has managed to incorporate the cancer treatments as yet another thing she does in her life with amazing grace and elegance.
We all need to adjust our lives at some time or other to inevitable, unwanted situations. There is always upheaval at first, but each of us can find a way to adapt and integrate these changes so they do not take over the totality of our daily lives. For me, writing about experiences on a daily basis has helped me view my experiences in a logical way – forcing me to see the negative parts as facet of the greater whole that is my life.
We all want to have a feeling of control over our bodies and our destinies. As much as we have measured successes in our professional lives, working toward goals with a blend of achievements and disappointments from external factors, we also find that our will is partnered with our physical bodies. There are times when our bodies require more attention – we have to learn to understand the signals our bodies provide and discover ways to accommodate the needs in times when we are having health problems.
Each crisis I face reminds me of an important lesson of my life… that while I cannot control everything – even something as personal as my own body, I can use my strengths and intelligence to strategically work in harmony with the forces of nature. With this, I can amplify my attention the parts I want to be experiencing and minimize the amount of effort I need to spend on the unpleasant parts.
Ups and downs, night and day, sickness and health, we live our lives juggling so many sets of opposites. When we view the tough times as a part of a greater whole, it all makes sense and we realize we can get much of what we desire in time. We can over focus on the now making it hard to see the bigger picture… the cycle with beginning, middles, ends that lead to new beginnings with middles and ends.
It gets easier. I’m focusing more and more on the things I can do – the swimming, walking around the big suburban shopping areas and things I can do here that have nothing to do with cancer treatments. I still get tired and need to nap, but that fades to the background. I know when I’m feeling tired, and don’t fight it anymore, instead I know if I sleep an hour or so, I’ll be back to feeling right again. I don’t have to worry about it and it will go away in time.
The Surgeon and The Homeopath
Posted on: April 16, 2011
- In: Homeopathy | Medical Info | Recovery | Surgery | Treatments
- 1 Comment
Yesterday I rerouted my trip out to include a quick stop at the homeopath to pick up my new “core remedy” . I am very curious about it and what it will do. I met with Carla briefly as she finished typing up my instructions. She gave me a brown bottle with an eye dropper, larger than the previous remedy bottles.
Each night, 30 minutes after last eating or tooth brushing. I am to tap the bottle 10 times against a cushion. This is a standard homeopathic practice that is believed to “potentiate” the medicinal qualities. Then I pour a small amount of bottled spring water into a glass, then add 10 drops and stir it. From this dilution, I put one teaspoon under my tongue and hold it there for 1-2 minutes.
I was warned that like all medications, it is possible to get a strong reaction to a new homeopathic medicine – with very noticeable aggravation of symptoms. I was surprised this is a possibility. I am intrigued by my experiences so far. No way to know if anything I’ve taken so far has helped. I have noticed feeling sleepier on the days I switch between the X-ray remedy and the Calendula, but it could also be coincidence. These last two weeks I was tired from radiation, as I had expected. How quickly I recover over the next few weeks will be interesting to observe.
I really would like the homeopathy to work and have a clear signal it is doing something. We shall see.
I continued on to the surgeon. Pleased I had remembered my eReader, I waited, I think a record time, to see Dr. Derossis. She had a student with her, so I guess each patient takes longer. I was well past nap time and almost fell asleep on the exam table before she came in, making me too groggy to actually take full advantage of the visit. She reviewed results of various scans and checked everything out.
Technique for Breast Exam
She told the student how to do a proper breast exam. The student was obviously uncomfortable touching my breast, but poked a few fingers gently around until Dr. Derossis stopped her. She said it is essential to always be methodical in a breast exam, or you will miss areas. She showed how she puts all four fingers of one hand bunched together, starting at about 1 o’clock position, then methodically moves the fingers in to the center pressing down gently for each step. Then she moves to the next “hour” and repeats the process. She pointed out I was one of the examples of why you need to check down in the ribs and up to the collar bone. The student reminded me that I was getting a good lesson in self-exam at the same time.
Dr. Derossis sent the student out of the room to ask me privately about my visits to Dr. Neron, the psychologist. She said this was always difficult for patients to talk about, but an equally essential part of healing. I told her briefly why I had asked for the consultation, and that he had been very helpful to me. She reminded me of how important it is to take advantage of the psychological support as well as medical, as needed.
I wanted to talk about my fatigue, but it was not very interesting to the surgeon, since it is expected for now. I was too tired to formulate my questions, although I already know my answers. There is no way to tell how long the intense phase of the fatigue will last, nor really how to improve it. Even that article I cited last week explaining the fatigue, suggests exercise as the best cure.
The trip home on public transit felt long but effortless. I stopped briefly to give Philippe a hug and kiss upon arrival, telling him briefly of my adventures as I walked toward my badly needed nap.
Last night, I got to tap my special homeopathic potion on a cushion then follow the directions. It is harder than you’d think to hold a teaspoon of liquid under my tongue for two minutes.
I left trying to assess whether it was making any difference. Carla said I would take a few days for it to feel different, although aggravated reactions could appear within 3 days. I slept well and woke up with a very unwanted ditty running in my mind. So far, I feel good, but normal. For now, even that is a good thing.
Today, I have too much to do to get ready to fly to Florida tomorrow. It is minor, but I am feeling effects of being out yesterday so it may be harder. Not that much to be done, but it feel daunting. I’m glad I have a late flight, so there is more time tomorrow morning to finish.
Post-Radiation Week 2
Posted on: April 14, 2011
- In: Radiation | Recovery
- 3 Comments
I know healing takes time. I’ve certainly waxed poetic on the topic, but when it is for me, it still is so hard to wake up each day feeling so lethargic and tired.
It was easier to lay low with my hips hurting so much from all the daily outings during radiation. It was lasting long enough, I was afraid it could be a permanent new high level of pain. Finally it is improving. It was hurting each step I took through the house. Yesterday I noticed I did not think about pain while going upstairs to the living room, and several times I walked around, no longer thinking of the intense pain of each step. It never fully goes away, even with medicine, but I am not required to think of it so often.
My skin is doing well… the last of the redness is out of my skin. I had lunch with my radiation friends, my skin was in better shape than the two of them who finished radiation a week before I did. I got off really lucky on that count.
Some days I’ve felt decent when I was awake, but needed to lie down once or twice during the day. Wednesday I got hit with another super sleep day – slept 10 hours, woke up to tired to open the computer so I read for an hour and drank coffee, then fell asleep for another hour. This time I woke up and took a shower, then lay down for a small rest after the hypnotic relaxation of the warm water. I woke up at 2:30 in the after noon – sleeping another 3.5 hours.
This morning I was afraid I would have a repeat of yesterday. I have things I want to accomplish and had no energy yesterday. I rested again in the morning, after my shower, but did not sleep. Finally I decided to have a bigger dose of caffeine and hope it will wake me up. As I was making tea, I received the phone call about my appointment with the orthopedic surgeon and a note about the homeopathy remedy (see last entry) which further energized me.
I will work on things in the house until Friday, when I have to go out to see Dr. Derossis, my oncology surgeon for a routine follow up.
The one change I’ve made this week is to begin exercising my arm again. I got lazy about doing it during the last weeks of radiation. The skin and muscles are tight and sore and just don’t feel right. They were getting stiffer from my letting them be and I don’t want to have persistent problems later on, so I began easy movements working both shoulders. I’m finding using my old baton – a metal stick about 2.5 feet long with nice rubber tips – is perfect to stretch the arm into the correct position as I move it. I’ve always enjoyed playing with my baton, so just holding it seems more fun. In just three days, I started noticing an improvement. Exercise is always so hard to get started, but pays off quickly. I’m taking it really slowly – the only way to insure I will actually do what I need to do each day.
There are no longer any external signs I’ve just been through radiation. This, at least, feels good. I’m hoping my two weeks in Florida will help. I will be able to start exercising my my mother’s swimming pool and hopefully the warm environment and all the sun will help energize me.
A final note: my hair is now about 2.5 inches long. Much softer looking that the super-short look, although nothing I’d pick.
Oh well. At least I’m not going out much where anyone can see me, and those who do understand.
- In: Recovery
- 4 Comments
I’d like to summarize a conversation I had yesterday, in an attempt to explain difficulties we can have after cancer treatments.
Cancer is a deadly disease and therefore, medically, it warrants the use of treatments that are far stronger and potentially damaging to our systems than those used for most other illnesses. When treatments end the doctors mention to take it easy and not push yourself for a while.
Just as we all secretly feel that we can maybe cheat death one day, we also feel an invincibility in our personal ability to heal more quickly than average. In our lifetimes, we’ve all had some colds and infections. They slow us down a bit, but we can always just push through it, when necessary.
Cancer treatments cause real damage to the body on the cellular level. The point is that our healthy cells will recover from the trauma, while cancer cells cannot.
When we go in for surgery, we recognize that there will be about two weeks for the incision to heal enough to remove stitches and a month for the skin to be healthy. We can look and see the progress.
With cancer treatments, we cannot see the damage done, so there is no visual cue to see either the wound or the progress toward recovery. We look normal and therefore, it is easy to dismiss the magnitude of healing that has to take place.
Healing takes energy and lots of it. I’ve also written about the effect it can have on our minds, what I call “brain fog”. It feels like the subconscious is busy directing the healing and therefore is not available for usually interaction with our conscious minds. Words escape us, memories refuse to surface and it is very unsettling – it feels like we are falling apart, getting old and this will last forever.
To make matters worse, sometimes, we feel good. I am amazed at myself, even though I have learned the hard way to pace myself, the minute I feel good, it feels like I am healed and ready to take on the world. My head is filled with all the things I haven’t been doing and want done. I want them done now. I dive in to the tasks at hand with enthusiasm, and in a short time, the energy is gone, my mood plummets as exhaustion kicks in. I’ve burned myself out, and it often results in tears of frustration.
Between fighting with back problems and cancer treatments, I’ve finally learned I have two choices. I can take it easy for the first weeks after treatment, as if I were recovering from surgery, or I can push myself and regularly feel extreme misery that feels like failure on a regular basis.
I’ve tried all sorts of strategies and there is no way around it. When the body needs to heal, it will force you to slow down by sapping your strength and mental abilities.
It seems for every hour I push myself, results in 24 hours or more of fatigue and brain fog.
Even though I know better, it is hard to enforce. I stayed in and behaved myself for a week, then walked too far to a medical appointment on Wednesday. Thursday, I had another appointment to go to. I needed rest, but went to the appointment. Friday I was a zombie. It continued Saturday morning. I took a nap that resulted in a deep, healing sleep and I woke up energized.
I walked past Philippe, who saw immediately I was feeling better. His reaction? “DON”T BURN YOURSELF OUT!” He’s watched these frustrating cycles of wanting to do things that will interfere with my healing processes.
I chose an activity that would be restful – sitting at the sewing machine doing something creative that does not require much energy or concentration. I worked about an hour before feeling the brain fog advancing creeping in like a San Francisco fog bank. I’m a week and a half after radiation treatments, and one hour’s work wore me out.
My body will win any battle of will by knocking me on my ass and there is nothing I can do but respect my need to heal.
No doctor can explain this to a patient, because most doctors have not experienced it first hand. I need to rely on my husband for constant reminders, since I cannot recognize what is happening until it is too late.
The fastest way to heal is to avoid these extreme cycles. If I stay home for a few days, I begin to feel normal and can do normal things that are not too tiring. I have to give myself a month, like a would from a surgery, before I expect to be able to go back to business as usual. During this month, I need to learn to recognize the signs of fatigue BEFORE it gets bad. For a while longer, I will have to stop when these warning signs appear. If I push myself… the painful energy plummet will happen.
This is a time to be gentle with yourself above all things. The problem is finding things to do that are engaging but not a drain on energy. For me, reading fiction books has been most helpful. I’ve read only non-fiction for the past 25 years or so, with the exception of books, like Harry Potter series, that I read out loud to my kids. I’d forgotten how engaging good writing is, and how much better the stories are than the condensed version found in films.
I forgot that fiction provides new strategies to problem solving – each story shows life from a unique perspective and point of view of some aspect of a real or imagined world. Each book also reminds us that there are times when we are overwhelmed by some epic obstacles, yet things will work out in time. We may not always have the control over things we wish, but we can, eventually, win in the end.
So healing can be seen as something to help us, something we are willing to work with… or the fatigue is something that thwarts us and we fight (and lose) prolonging the recovery. We need our bodies to be all we want to be, do all we want to do. I have to remember to help it happen quickly and efficiently. I really have no choice.
One third of cancer patients suffer from “continued debilitating fatigue” long after being treated for breast cancer. I had this problem in 2001, and see signs that it may still be a problem. A new study provides a possible explanation along with some unpleasant news: the process “speeds up the aging process and makes them look and feel old.”
No, thank you. I’d rather not.
Before I explain the findings, I want to mention they also provide a recommended solution, that is very doable and does not require more medicines.
The article refers to this effect starting when we are diagnosed with breast cancer. When I first hear the results of a biopsy, get the news that there is dangerous cancer, I remember feeling a huge surge of adrenaline, so strong that all logical thought dissolved and I felt in shock. This is the fight or flight response built into our bodies to protect us in life threatening situations. It focuses our attention on the imminent danger, making it nearly impossible to be logical or think of anything else.
The study says that during the long treatments, for about one third of patients, this system, called the sympathetic system, starts to trigger more easily. Normally, there is another system, called the parasympathetic system, which turns off the adrenaline rush. For the fatigued patients, it seems that the parasympathetic system takes much longer to act and was much less efficient in to returning the body to normal.
“While the sympathetic system is an energy hog, the parasympathetic conserves energy, and the two should remain in balance in healthy individuals.”
The comment that this is linked to signs of aging pointed to a single thing – the heart rate varies more in younger people, less in older people. The fatigue prone individuals, also showed less heart rate variability than the others. If our hearts do not adjust quickly to our energy needs, the amount of oxygen sent to our brains and muscles will not always be right for the situation… Older people have a harder time with stressful situations because of this inability to adjust the heart rate immediately.
The Solution
I felt some relief that the study included some information on how to improve the situation. The answer: Exercise.
Exercise is the best documented treatment for fatigue. Studies show that it also can help correct the heart rate variability problem. Other studies have shown that exercise burns off the residual adrenaline in the system. This is an evolution trait developed long before modern stresses – where humans were faced with physical dangers requiring physical reactions. Movement of any kind clears out the effects of the sympathetic system quickly.
Source:
Breast cancer patients’ persistent fatigue is real, may actually speed up aging: a report from Phys Org about a recent study from Ohio State University’s Institute of Behavioral Medicine Research (IBMR), published in in the journal Psychoneuroendocrinology.
Understanding brain fog
Posted on: April 3, 2011
- In: Chemotherapy | Radiation | Recovery | Treatments
- 3 Comments
This morning I got a wee bit of insight into the phenomena I’m calling “brain fog” where my head is not thinking as it should.
Using the eye as a metaphor, I can be focused on something, see it clearly, or I can have a more diffuse mental state, like peripheral vision, that is always shuffling around the many random thoughts that have some minor relationship to what the focused mind is doing.
My focused mind is fine… I can read information and learn new facts when they are presented in a straightforward manner, although not as long a time as usual.
There is something off with my “peripheral mind”, the one that is ready to make connections between things and helps bridge the gaps when I encounter an anomaly.
In this case, my husband has been working diligently to improve our computer backup systems after a nasty hard drive failure in February. I’ve been negligent on my end, since I’ve rarely felt up to understanding new complex concepts with the computer, and I want to understand what he is doing.
Today he nudged me to start transferring some data to his new RAID backup system he had set up for me. I was ready for a nap and asked if we could work on it in the afternoon. He volunteered to go set things up for me, and with my permission, ran off to make an icon on my desktop to make all this easy for me.
It is never that easy with computers… he needed a password. I cringed. The new backup system required a longer password than I am used to. Of course, I did not remember it. This means I had to go open a program where I store passwords.
This is just the sort of thing I wanted to avoid… although I never really observed why. This little glitches we encounter regularly in life are much more difficult for me to deal with right now. There was no reason for this to be hard, so I went to to find my password.
As I opened the program, it displayed a list of categories to the left and a list of details to the right, as is common in most computer lists.
This is where the brain fog hit. I could see all the words, and understand the meaning of each as a dictionary would. My mind was not readily identifying the meanings of these words in context… I had been reading about fabrics, and now suddenly all these computer words were there, ones I know intimately, but shifting contexts quickly. I just stared blankly at the screen feeling like an idiot.
Finally I picked the word “Network” as the one I was probably looking for. I looked at the choices to the right and I saw words I knew from literature and science used to name various hard drives and computers. The dictionary definitions came to mind, but the fact that these had another meaning stumped me, momentarily.
The worst part is that IT HURT! You know when you get a “Eureka” moment, like when you identify a difficult word in a crossword puzzle or remember something it feels good? Your body actually releases positive neurotransmitters that give a little “feel good” rush when we discover things.
Well, brain fog is just the opposite, it feels like slamming into a brick wall with my brain. I stare and know I know the meaning, yet it does not just pop up. Usually I’ll have any number of strange associations with any given word, and here I was fixated on just the one meaning, even when I knew I was looking for the name of a computer device.
It is really weird. Philippe was watching me, and gently pointing out the right thing to click on. I was able to take the few remaining steps and enter the password… though deflated and demoralized, even embarrassed to be so clueless in front of my husband even while he is being very understanding about all this.
If it does not make sense to me, I wonder how it looks to others when I’m intermittently so out of it at random times?
The fog sneaks up on me when I’m tired. I don’t always feel it coming, yet I’m learning to postpone lots of things until later… when I feel more alert.
This will pass, hopefully quickly, and I’ll get back to normal. It must be related to my need for sleep, that much of my “peripheral brain” is busy repairing parts of my body damaged by the radiation therapy.
This is just weird.
Connoisseur of Sleep
Posted on: April 3, 2011
I hate the effect that these intense recovery days seem to impact my ability to think and to write. Curiosity and focus are both abilities that stem from a healthy mind and body.
I’ve been sleeping so deeply, both at night and during naps. As a new connoisseur of sleep, I feel I need a new vocabulary for types of sleep, like the many names for snow for those who live in the Arctic regions.
The sleep of recovery zonks me out intensely, and is difficult to wake up from. Some days, I feel in a fog until after a nap. Others, I’m OK, until I nap, then foggy the rest of the day.
Dreams are vivid and colorful. Last night I had figured out how to make a futon fly by concentrating on where I wanted to go. It could go through walls and anywhere I imagined… that part was cool beyond words. The dream ended with me talking with the surgeon about needing a double mastectomy to prevent future cancers. Other dreams have been more positive, but themes of the dreams seem to all point to my transitioning away from medical treatments and back to ways to regain a healthy, normal life.
I’m spending most of my waking time attempting to do something constructive. Reading a book on Hildegard of Bingen’s health remedies from the 12th century, a book on fabrics, and urban-fantasy novels about minor weirdnesses in an otherwise normal world.
I’ve also begun sewing a white jacket for spring. The one I cut out just before radiation began. It is an easy project, but fun since I’ve made some minor modifications to the pattern to customize it.
I used to be excited to get sewing projects done, as if there were a prize for finishing quickly. I realize now that this is creative for me, and therefore, I may as well take my time, and enjoy each step. In addition to enjoying the process, the project turns out better from the extra attention.
Although this sounds industrious, I’m spending only a few hours on these tasks a day. I’ve not set food outside the house in four days in an attempt to get rid of irritation on back/hip joints from being out each day. I find myself actually looking forward to getting all this fixed, despite my fear of more surgeries and medical things. I just want my life back.
I’m not fighting the fatigue for now, but embracing it as a step in healing. I’m hoping the homeopathy will help me recovery more quickly. It feels good, each time I open one of the tiny vials of remedy, that I am at least trying out something else to help me recover.
Patience is hard.
- In: Radiation | Recovery | Treatments
- 2 Comments
I was lax last week in my medical update… nothing had seemed to change. In the last 2 weeks the radiated skin was sensitive, but not particularly red. This was quite different from my friends who were eager enough to show off the painful red burns that were demanding constant attention.
My shoulder after 33 treatments, pink but not the deep red I`ve had after other treatments.
Ok, so I wasn`t going to put my armpit on display, yet this is a part of the story... You can see the twin scars from surgery in 2001 and 2010, even in the armpit, my surgeon attempted to keep things as nice as possible.
I was encouraged that my skin was holding up so well. Was it Donna`s magic potion helping me? Or was it just how the radiation was applied to me this time? 33 treatments means more time to heal between lower dosage treatments.
Either way, I got off easy in terms of my skin. In contrast, my fatigue is far worse than any of my peers I’ve encountered. Some get by with no naps at all.
It is interesting that it is impossible to detect the sharp outline of the radiation field on my collarbone area. Normally there is a distinct “bathing suit line” when the radiation makes its mark. Note that the pink areas are places that all breast cancer patients need to check regularly with the self-exams. These are where the prime lymph nodes are that drain the breast. Likely places for cancer cells to hide.
In the last week of treatment, my last inkling that there was still living cancer cells in my body went away. This sense, last fall, proved to be valid and not paranoia last fall when I found a swollen lymph node. I hope this feeling it is all gone is just as accurate. I am ready to be done with cancer treatments forever.
The brain fog is the last symptom for me. I don’t recognize when it kicks in, although it is rather obvious to Philippe who complains of me spacing out or not hearing him. I can repeat his words, yet the meaning never registers. I have to be extra careful not to multitask – stay in the room and focus on cooking when I’m cooking so I don’t burn the place to the ground.
I’m taking my homeopathic “after radiation” treatments. I’ll write that up soon, since I want to show photos of the cool bottles of my custom made potions. If nothing else, homeopathy has that personal touch.
Learning to listen to my body is an acquired skill. It requires sitting or lying down in a quiet state, calming the inner voice of logic – my inner “know-it-all” and listening for something more subtle. The easiest is to go through each sense, one at a time, to see what I am smelling, what I am tasting, what I am feeling in various parts of my body and finally allowing the thoughts to drift forward, like the answer in a Magic 8 ball. Then staying with the feeling, magnifying it, until it registers clearly. It takes practice, but an essential skill for me.
The Radiation Oncologist told me that my skin may continue to get redder and more irritated over the next week. As I remember, the week immediately following the last treatment is the worst… just like with chemotherapy… these treatments take time to heal.
At least I can do all this from the comfort of my own home.
Cancer 2.0: The Sequel 
Recent Comments