Wednesday: 1276 kcal; no exercise
Thursday: 1643 kcal; no exercise
Today was a day of doctor's office visits -- 2 for me and 1 for Lorraine.
First up was my first meeting with my oncologist since before my last treatment -- the all-important post-chemo meeting. Most importantly, we talked about my follow-up care -- the ongoing monitoring to see if I relapse or stay in remission. A lot of folks have scans quarterly during the first year, but my onc feels that the body has already taken a beating from the chemo and the 3 PET scans to date, so she opts instead for bloodwork and office visits quarterly and a PET scan every 6 months -- this for the first 3 years. For the next two years, 1 visit and 1 PET. After that, because the generally accepted "cure" turning point is the 5-year mark, we'll leave the frequency of monitoring after that for later monitoring.
This means that in 3 months she'll check my blood counts and give me a brief physical, which will undoubtedly involve lots of purposeful prodding of my lymph nodes. 3 months later I'll get another PET. She DID say that if I'm more comfortable getting a PET at this first 3-month mark, we can go ahead and get one, but she recommends not doing it in order to give my body a break. (The scans' radiation does add up.)
We also talked about my weight loss -- or the lack thereof -- and bottom line, she told me not to be hard on myself for losing only 4 pounds; on the contrary, she said that even this loss was a huge accomplishment at this time. She said that most people gain after chemo. I got a little teary, and explained that I was really struggling with my chemo weight gain. We just left it that I'd stick with what I'm doing, and eventually it will work.
At my request, she gave me a referral for a therapist experienced in helping folks with cancer. I'm having a hard time emotionally in the aftermath of the cancer -- like many others. Some of us get hit harder afterwards, after the "gotta get through chemo, gotta stay positive, I'm going to beat this" energy goes away and you're left with the emotional impacts of the diagnosis, subsequent treatment, and the personal upheaval of both.
I asked her to quantify my prognosis, given my personal stats, type of cancer, staging, response to treatment, etc.....and she gave me a "greater than 80%." She then said again what she'd told me before: The single greatest indicator that you're going to continue through remission and on to a cure is a 100% clean scan at the halfway point. Well, now, that is very, very encouraging.
The second appt. of the day was at my surgeon's. He checked out my incision, stuck on some new holding strips, and off I went!
Then it was on to the infectious disease doc to get some help for poor Lorraine. He was just completely impressive -- just so thorough, insightful, and knowledgeable. After getting a very detailed recounting of the chain of events, from the bite, through the symptoms, past the overnight hospital stay and subsequent cardiac catheterization and into resulting treatment.......after all of that.......he said it's very unlikely she's got Lyme Disease. Fascinating! The test is reknowned for false positives and negatives, and he said, based on the chain of events, it seems that something toxic probably happened, but that he's going to need more information before he can come to a final conclusion. So we're going to get him copies of all the test results (we thought they'd already been forwarded, but they hadn't) and go back to meet with him again in a couple of weeks. In the meantime, poor Lorraine gets so dizzy she has to pull off the road, has an ongoing drum beat in her ears, and gets what she can only call, "crazy heart beats" and chests pains. Her heart is functioning at 34%, it's surrounded by fluid, its electrical system is screwed up (left bundle branch block,) and she's almost always fatigued now. She's got 8 days left of her month-long antibiotic regimen, and takes 3 medicines for her heart (1 of them is for her cholesterol.)
So we wait.
In other news, I couldn't get an appt. with my podiatrist before Monday (unless I bumped my oncologist appt. -- which wasn't going to happen.) So that's when I'll find out if the entire nail needs to be yanked, or if we can get away with cutting it down to a quarter inch. We'll see. I can't stand my podiatrist, so if I can get a same day appt. with someone else tomorrow, I'll go for it.
I've been eating well, but no exercise for two days. I'm back on it tomorrow.
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5 comments:
When it rains, it really does pour, doesn't it? Big hugs going your way and to Lorraine, too - must be so scary for you both!!!
How's Lorraine, a few days later now? I think about you both all the time and you're in our prayers!
Hi Sarah, I have been reading your blog now for several months as my wife, Jennifer, goes through chemo for Hodgkin's. I did not ever share your site with her, as she is very impressionable, and I was afraid that she would believe that her chemo would get worse and worse with each treatment (as yours did). As it turns out, her reactions got better with each treatment (although always horrible).
Today was her last treatment. All the scans so far are positive. We opted not to do radiation but to have 6 full months of chemo. The Neulasta was terrible for Jennifer - I convinced the doctor to allow the nurses to squirt out half the 6 ml and only give her 3 ml because the first two times she got Neulasta, her WBC shot up to nearly 20 (normal range 4.4 - 10.4 or so), and she was in the kind of pain she could only describe as "suicide pain". It's weird watching over $1,200 get squirted into a garbage can every two weeks, and it saddens me that there aren't doses by weight instead of a one-size-fits-all dose. How many people are getting too much Neulasta (or for that matter, too much Decarbazine?) and paying for it with pain or long term effects?
Unlike you, Jennifer's problem is not losing weight, it's gaining weight. We have been using a whey protein drink mixed with a Carnation to keep her weight on (she hovers just above 100 lbs).
Here are some tips for you to lose weight. If you follow them rigorously while continuing to exercise, they will work. But you must do all three.
1) Drink twice as much water. Also drink water before, during and after meals. Water helps the system flush out waste and clean you out so your body can more effectively reduce the amount of fat in your fat cells. It also reduces the acidity of yout stomach during meals. For the first week you will pee more. But then your bladder will become accustomed to it and actually grow stronger - you will end up peeing less. Always have a drink with you (any mostly-water drink will do - Gatorade does well).
2) Eat a tiny snack (like two or three crackers, or a piece of celery) half an hour before eating a meal, then serve yourself half as much. You will be just as full (it takes 30 minutes for the stomach to tell the brain it's got food in it), but there will be less food. Eat nutritious meals always.
3) Chew your food for twice as long. Poorly chewed food stays in the stomach longer. Stomach acids break the fat and bad carbs away from food so they can be absorbed by the intestines. Stomach acids also destroy nutrients your body needs. The less time in your stomach, the better. The only function of the stomach is to break poorly chewed food into smaller pieces - its only method is to dissolve it with gastric acid. Well-chewed food passes through the stomach much faster. Far less nutrients are destroyed, and far less fat/bad carbs are released for absorption by the intestines. So your smaller portion main meal will give you more nutrition than twice as much poorly chewed.
So that's the secret. Drink more water, have a tiny snack 30 minutes before meals with smaller portions, and chew your food twice as long.
Be less concerned with what you eat and more concerned with how you eat it.
Other things to try:
-take Goldenseal (get the alcohol free liquid tincture). It is a constituent for the immune system, but also acts as a digestive aid. Take 1/3 the recommended daily dosage with each meal. Goldenseal is also used in some countries (such as China) as an immune booster during chemotherapy.
-Relax for 30 minutes after eating (that is, don't do anything strenuous like exercising). The digestive process needs a lot of energy. The more energy you let it have, the more efficient it will be.
-Walk more. Running, jogging, and high cardio exercises don't really burn fat as much as they burn energy. Low impact exercises over longer durations burn more fat but don't leave you exhausted. Keep doing cardio exercises, as they will help build tone, but focus more on low-impact activities.
-Stretch. Stretch in the morning, before any walk or workout, and before you go to bed. Stretching relieves the tension in your tendons and joints and lubricates your system so you ache less and your exercises are more productive in fat burning.
-Massage. Have your partner give you a full body massage at least 3 times a week. This helps to spread interstitial fluid between your cells and lubricate them so they are more able to interact with your body as a whole. And of course massage your partner - it's low-impact exercise.
-Get chocolate-flavored whey powder to mix with low-fat milk. Mix with a Carnation powder. You will ache less. Workouts burn adenosine triphosphate (ATP) within the muscles, releasing a phosphate ion resulting in adenosine diphosphate (ADP). The release of the ion creates an electrical impulse which causes your muscle to contract. The phopshate ion is only reabsorbed when enough protein is available. A lack of protein results in the fermentation of the phosphate ion into phosphoric acid (which is what causes your muscles to ache). Extreme cardio activity can cause adenosine diphosphate to become adenosine monophoshate (AMP). This is harder to replenish and makes you even achier. Add whey protein to your diet and you will be less achy and your fat energy will transform to muscle and endurance.
Well I've rambled enough. I hope that you, and possibly othres, can gain insight from the above suggestions. The key is to keep it up. Results are not immediate. They take time and require consistency and dedication.
-Jake
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Hey, you have a great blog here! I'm definitely going to bookmark you!
I have a skin cancer site. It pretty much covers skin cancer related stuff.
Come and check it out if you get time :-)
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