Out...of...breath...

Rebounding is supposed to be a great exercise for breast cancer survivors, especially since it helps stimulate the lymphatic system. That's one reason I bought my rebounder in the first place...I suffer from Lymphedema. Lymphedema occurs when the normal lymphatic flow is disrupted and lymphatic fluid accumulates in the body. It's uncomfortable and, at times, can be quite painful. So, to help my body reabsorb the lymphatic fluid that collects in my upper arms, I jump. My rebounder is not only fun, it's a medical necessity. 

If you've never jumped on a rebounder, it's quite an experience, even my youngest granddaughter, Heather, loves it! Let me tell you about it. My rebounder is not the typical rebounder. Mine has bungee cords holding the rebounding trampoline on to the frame. Most rebounders have metal springs. I chose the kind with the bungee cords because it was quieter and provided a safer jump experience. Maintenance is low and the bungee cords don't have to be replaced but every 3 years. 

In preparation for rebounding, comfortable clothes is a must. You're going to be jumping and bouncing and you don't want to be wearing anything restrictive. I usually wear a tshirt and sweats. You can jump barefoot, in sock feet, or in tennis shoes. I usually jump barefoot or in tennis shoes. I've found that socks are too slippery and slippery socks and an uncoordinated jumper don't make for a good mix! Shoes help people with weak ankles and provide more stability. When you've decided how you want to jump (barefoot, socks, or with shoes) it's time to climb up onto the trampoline. The rebounder is only about 14 inches off the ground but even that height can prove you unstable if you don't have good balance. 

The best way to get going is just to start gently bouncing so you can get the feel of things. I always try to stay right in the center of the trampoline because I'm afraid if I get too close to the edge, I'll get my feet tangled in the bungees and fall....I'm a klutz, just so you know (and I'm not kidding here). After you've bounced gently and slowly, you can start to increase your height and speed. I've found the higher I go, the less stable I am. You can twist from side to side as you jump up and down, you can do jumping jacks, you can alternate feet...there's a lot you can do. Just the up and down motion stimulates the lymphatic system and disburses the lymphatic fluid. (There are many rebounding routines out there on the internet if you need one.)

Since I tend to get a little wobbly and off balance, I've found that it helps me to use a stablizing bar. You can purchase one specifically for your rebounder but I've found I can scoot the rebounder close to my treadmill and hold onto one of the treadmill bars while I jump. Holding on to the bar affords me some much needed stability and gives me more confidence as I jump higher and higher. 

Today, as I was jumping, I started to form my own little jumping routine. First I marched in place to give my heart rate time to increase gradually. Next, I started to jump up and down gently and then began jumping from side to side. After doing that for a little bit, I started to twist side to side as I jumped. I was having fun! I decided to ramp it up a notch and started bouncing harder and faster. Within just a few minutes I had to stop! My heart was beating really fast and I could hardly breathe. I wondered why I was having trouble breathing...I hadn't ever had difficulty breathing when exercising before and then, I remembered. 

When I had my PET scan, to look for the spread of cancer in my body, the radiologist noted I'd had damage to my right anterior lobe of my lung from the radiation treatments. I guess that's why I was getting out of breath easily, so I slowed it down a bit and felt better. As I continued jumping, I had to laugh. Here I was jumping on my rebounder while holding onto the treadmill handrails. I got a mental image of myself being really energetic and doing a big jump from the rebounder right onto the treadmill and immediately beginning a rapid jog. Before my mind could return me from the treadmill back to the rebounder, I took a deep breath and hopped off. I'd better not push it. One and a half lung isn't the greatest for rebounding but it surely would be stressed to the max if I included jogging on the treadmill too. I'd hate to have had to call 911 and tried to explain what I was doing and how I'd gotten so out of breath. I don't think they would have believed me. 

Rebounding is a fun, low impact exercise and I highly recommend it. Just be careful and check with your doctor first. 

© bonnie annis all rights reserved

It's time for it to come off

I made a decision last night that I feel good about. I've been thinking about it for some time now and truthfully, I know it's time. I've been struggling with it for years now and I've done everything I could possibly think of to prolong this decision...but I've finally accepted the fact that it's time for my hair to come off.

September 2014 longer hair

When I was a teenager, I first began experimenting with hair color. I don't remember why I wanted to do it. I must have seen a commercial on TV advertising Miss Clairol or something. I thought it would be a great idea to change the color of my hair. Back then, my hair was a beautiful shade of reddish brown with golden highlights. People would kill for that color. I wasn't disappointed with my hair, I just wanted a change, and you know teenagers, they're impulsive. 

I bought a bottle of hair color and told my mother that I was going to dye my hair. She wasn't too happy. She tried her best to discourage me, but I was determined. I read the back of the box and followed the instructions to a tee. After about 45 minutes, my hair was a totally different color. I no longer had the beautiful reddish brown hair with golden highlights that God had so graciously given me, now I had bright clown red hair. I wasn't happy. 

Back to the drugstore I went to find a way to correct this colossal mistake. The only thing I could think to do was dye my hair a darker shade, so I picked out a nice black thinking it would do the trick. When I got home, I went through the entire process again, and after another 45 minutes, my hair was no longer bright red, but midnight black. I stood looking in the mirror at my reflection. Who was this person? My complexion looked stark bwhite against my dark, dark hair. I wasn't thrilled but it was better than the bright red. 

March 2015 shorter hair

That began my love/hate relationship with hair color. From that first experience when I was a teen til now, almost 43 years later, I can't tell you how many boxes of hair color I've bought. I also can't tell you how many hair emergencies I've had during those years. Once, while recoloring my hair too soon after having just dyed it, my hair turned green! No, I'm not kidding. It was green! Thank heavens Clairol, or one of their competitors, invented a product to remove those horrid mistakes. I wish they'd had "Color Oops" back in the 70's when some of my worst hair nightmares occurred. 

Over the years, I've learned a thing or two about hair color and the proper way to apply it. I've learned which products would give the best results and which colors looked best on me. I would say, after 40 something years of coloring and highlighting my hair, I've become a pro. I'd also say, I'm really tired of coloring, especially now that I have Lymphedema in my arms. 

When I was younger, it was so easy to color my hair. My arms never got tired and I could have applied and removed hair dye all day long. Now, I struggle to lift my arms over my head. The swelling from Lymphedema is the culprit behind my difficulties and that very culprit has helped lead me to my decision...to shave my head. 

August 2015 at the salon

I told my youngest daughter about my decision last night. At 27, She was all for it! I asked her if she'd help me, you see, I can't manage the clippers myself because of arm pain. She was more than happy to help. I explained that I was tired of fighting the signs of aging. Every time I dyed my hair, I told her, within a few weeks, I'd have a band of white framing my face. No matter what color I chose, the white always came back and it just wasn't worth it any more for me to keep the battle going. 

She asked if I was going to shave my head bald. I hadn't really thought about it, but I guess that would get rid of the majority of the color. Then I got to thinking...it's going to be much cooler soon. I get cold easily. Could I deal with having no hair on my head? Wouldn't I freeze to death? I could always put on a hat, or a wig....hmmmm. 

I haven't decided how short I'll go. I know my goal is to get this fake hair color off of my head and allow my natural, God given, white hairs a chance to grow. It's going to be strange seeing myself with a head full of white locks, but it's time. I'm almost 58. I'm over the facade. I just want to be real. 

August 2015 highlights

It's amazing how losing your breasts can cause you to become fierce. Fifteen months of struggle and I've finally gotten to the point where I don't care about people's opinions any longer. The outside of me doesn't reflect the inside of me, so what's a few less hairs? I can always grow them back again. Think of all the money I'll save! And think of all the fun I can have playing with different wigs! I can go from short to long, blonde to black, in just a few minutes. Yes, it's definitely time...as soon as I get back from vacation, the clippers are coming out. I'm going to redefine what it means to be BOLD AND BEAUTIFUL. 

©bonnie annis all rights reserved

Jump for joy!

If you've been reading my blog for a while, you know I struggle daily with swelling in my upper arms. It drives me nuts! Within just a few minutes of waking, my arms are already getting fat, and I have a condition called Lymphedema to thank for it. It not only causes discomfort, it also causes me to have to buy shirts two sizes larger than I normally wear just so I can get my arms in the sleeves! So, you can imagine my frustration and my desire to find any and everything that will help decrease the effects of Lymphedema on my body.

Today, as I was researching, I found an interesting study by By Dave Scrivens, Certified Lymphologist, that was published in the Well Being Journal Vol. 17, No. 3. In his article, Mr. Scrivens says, "The body has a built-in need for activation. The lymph system, for example, bathes every cell, carrying nutrients to the cell and waste products away. Yet the lymph is totally dependent on physical exercise to move. Without adequate movement, the cells are left stewing in their own waste products and starving for nutrients, a situation that contributes to arthritis, cancer and other degenerative diseases. Vigorous exercise such as rebounding [jumping on a therapeutic mini-trampoline] is reported to increase lymph flow by 15 to 30 times. Also, bones become stronger with exercise. Vertical motion workouts such as rebounding are much different and much more beneficial and efficient than horizontal motion workouts, such as jogging or running. The lymph fluid moves through channels called “vessels” that are filled with one-way valves, so it always moves in the same direction. The main lymph vessels run up the legs, up the arms and up the torso. This is why the vertical up-and-down movement of rebounding is so effective to pump the lymph."

Dr. Scrivens also says: The lymphatic system is the metabolic garbage can of the body. It rids you of toxins such as dead and cancerous cells, nitrogenous wastes, infectious viruses, heavy metals, and other assorted junk cast off by the cells. The movement performed in rebounding provides the stimulus for a free-flowing system that drains away these potential poisons.

Unlike the arterial system, the lymphatic system does not have its own pump. It has no heart muscle to move the fluid around through its lymph vessels. There are just three ways to activate the flow of lymph away from the tissues it serves and back into the main pulmonary circulation. Lymphatic flow requires muscular contraction from exercise and movement, gravitational pressure, and internal massage to the valves of lymph ducts. Rebounding supplies all three methods of removing waste products from the cells and from the body."

So as I read about the beneficial effects on the body of rebounding, it just made sense! I thought weight lifting would be the best thing for displacing the fluid collecting around my upper arms but after the pain I suffered last night from using them, I've changed my mind and think this may be the best option. Now to find the perfect rebounder. 

Do you remember the scene from the movie, "Fried Green Tomatoes," where Evelyn Couch (Kathy Bates) is jumping on her rebounder? That's going to be me soon! I'll let you know how it works and maybe I'll enjoy it so much, I'll be jumping for joy every day!

©bonnie annis all rights reserved

Pump, pump, pump it up!

One of the possible after effects of bilateral mastectomy and lymph node removal is a condition called Lymphedema. It is considered chronic and incurable. When lymph nodes are removed, the normal course of the lymphatic fluid's flow is disrupted. This causes a painful swelling in one or both arms which can be quite debilitating. Other symptoms can include a change in skin color and texture, a feeling of heaviness, and difficulty using your fingers for daily tasks.

After I had my surgery, I was instructed not to have any needles, blood pressures, or any type of restrictive clothing on my right arm (because I'd had 6 nodes removed in that arm) and I was told if I must receive medical treatment of this type, I'd have to instruct the medical personal they must perform their duties on the lowest point possible on my left arm, which usually meant my hand. 

The swelling I experience has been far worse than the breast surgery itself. Usually, the swelling starts in the early morning and builds constantly throughout the day. Even though the physical therapist showed me how to perform manual lymphatic drainage on myself, the swelling is quite bothersome and impedes my arm movement. 

I was reading an article a few days ago about weight lifting and Lymphedema. It was first thought that lifting any amount of weight would be detrimental to a patient suffering Lymphedema and would exacerbate the condition. I remember shortly after my surgery, being instructed not to lift anything heavier than a gallon of milk, but was interested in this new study. Here is what it said:

In 2005, guidelines published by the National Lymphedema Network stated that strength training "poses the greatest risk to individuals with Lymphedema." But now those guidelines are being challenged. Clinical trials and studies are now delivering a blow to the old idea that exercise, and strength training in particular, worsens arm Lymphedema. Current research suggests that you pump a little iron in order to reduce or prevent arm swelling.

A study done at Lund University in Sweden found that when breast cancer patients did a regular program of light free weights they experienced relief from their symptoms. Routine lifting of one-pound weights helped with muscle tone, arm strength, and bone density.

At Flinders University in Australia, 38 women learned to combine deep breathing with arm exercise for 10 minutes every morning and evening. They did this program for one month, and found that their arm swelling went down. In addition, their Lymphedema symptoms were much milder than before starting regular exercise. These women said that their arms felt better for 24 hours, one week, and even one month after the end of the study.

Finally, a study published in the New England Journal of Medicine looked at 141 breast cancer patients with Lymphedema who had taken part in an exercise program. While half of the patients were careful not to overuse their arms, the other half was doing progressive weight lifting. All of the women in the study had lost one breast, had relatively healthy body weight, and had been out of breast cancer treatment for at least one year. Certified Lymphedema therapists monitored the women's arms, and fitness professionals working at the YMCA taught 90-minute classes that met twice a week. During classes, the women followed a routine of warm-ups, abdominal and back exercises, and weight-lifting exercises. They did weight lifting with all the major muscle groups, very slowly increasing the weights that were used. No upper limit was set for the weight to be lifted, and instructors worked to monitor safety and comfort of the participants, as well as keep an eye out for Lymphedema flare-ups.

Researchers were surprised to find that the group that lifted weights had significantly less Lymphedema symptoms than the women who protected their arms.

Researchers think that arm muscle contractions may help move lymph fluid back to veins in your armpit and neck, so it can rejoin your blood circulation. When the lymph fluid goes back into circulation, your arm Lymphedema should improve. 

After reading the study, I decided to try daily weight lifting using light 3 pound weights. I was hesitant to exercise for long periods of time until I tested out the effects of weight lifting on my own swollen arms and therefore, decided to begin a daily trial of 30 minutes or less.  

I searched the internet for a beginner's weight training program and found one with the "Beach body mom." I noted before beginning, my arms were pretty swollen but wanted to conduct this experiment on myself, so I began slowly. The weights didn't seem very heavy at all but as I progressed past the 10 minute mark, it became more and more difficult to raise my arms with the tiny weights. I don't know how much of that struggle was from Lymphedema and how much was just from being out of shape, but I kept going. I really pushed myself. My arms were really burning but I got to the 20 minute mark before calling it quits. 

After waiting 15 minutes (my cool down period), I rechecked my arms. It seemed they were actually a little less swollen and a little less tight. So far so good! I went about my daily household duties and checked again about 3 hours later. My arms were feeling pretty good and the swelling had stayed down. 

Around 5:00 p.m. I checked my arms again. There is still some swelling there but it is not as prevelant as it has been. I think the weights may have actually helped move some of the lymphatic fluid. 

Hans and Franz

I'm going to continue my experiment for at least a week and report my findings to the breast surgeon when I go in for my check up next week. Hopefully I'll continue to note a daily improvement. If I see an increase in swelling, I'll have to stop but until then, I'm going to pump, pump, pump it up! And, every time I say that, I can't help thinking about the Saturday Night Live skit by Hans and Frans (they're two guys making fun of Arnold Schwarzenegger). They just crack me up! Here's a short video (there's a commercial ad first, sorry about that, but if you have a few minutes, take time to watch it.)

© bonnie annis all rights reserved

Lymphedema sucks big time! (forgive one more rant, please!)

I wish this was going to be a sunshine and roses post, but it's not, so be prepared. I'm not usually a grouch monster but today, I can't help it....I have a good excuse.

This will be a very short post because my arms are extremely swollen. I was trying to do some sewing today for my grandchildren and was making a good bit of headway until my arms started swelling. I took a little time away from my sewing machine to do the manual lymphatic massage and got the swelling down enough to put on my compression top. After putting it on, I went back into my office/sewing/craft room to resume my projects.

The compression top was extremely uncomfortable and I haven't worn it in a long time so it was rubbing underneath my armpits. It was really tight and I wanted to take it off, but knew if I wanted to keep on sewing, I'd have to keep it on. I managed to wear the compression top and do a couple of hours of sewing before giving in to defeat. I had done all I could do and I knew I had to take off the top.

About the time I was realizing my limitations, my husband came in from work. He's always so sweet to me and started chit chatting about his day. I burst into tears and told him I had to get this top off right now. I reached up underneath my t shirt and unzipped the compression top. I unfastened the hook and eyes and undid the Velcro, pulling the compression top off in one quick motion. What a relief to have that torture device off!

My arms are so swollen now that I can't do another thing. Hubby tells me to go put them up on pillows and rest. I'm so frustrated. I can't get used to being unable to do the things I used to do...lymphedema sucks big time and it will never, ever, ever go away. I'm stuck with it for the rest of my life. Isn't it enough to have your breasts removed? Did I have to end up with non-stop swelling too?

© bonnie annis all rights reserved

Forgive me for complaining

I am so tired of waking up with huge, swollen arms! This Lymphedema sucks! Every morning, I have to get up and do manual lymphatic massage on myself just to be able to move my arms. The swelling has gotten so bad that I'm having to buy shirts in a much larger size just so I can get my arms in the sleeves. I don't mean to complain, really I don't, but can't my life just please return to a pre-cancerous state??? Is that too much to ask?

Nobody told me how crappy it would be after having lymph nodes removed. My breast surgeon did elude to the fact that I MIGHT get Lymphedema but she didn't think I would since I was only have 2 lymph nodes removed in my left arm and 4 removed in my right arm. Apparently even having one tiny little lymph node is enough to disrupt the whole lymphatic system and cause Lymphedema. 

It's hard to describe how it feels, but imagine, just underneath your skin, there is an accumulation of fluid. The fluid swells and gets tighter and tighter...so much so, that you feel like your skin is going to pop and split wide open! The swelling impedes movement and is quite painful too. It's not a once in a while thing...when you have it, you have it for good. It doesn't go away. 

My body is already a mess. When I look at myself in the mirror, I wonder how my husband can still love me. I have no breasts. I have huge scars across my chest. I have scars from the drainage tubes they put in after surgery. I have tattoos from the radiation clinic that they used to line me up under the linear accelerator for treatment and also, I have fat, swollen arms. Have you ever seen a Sumo wrestler? That's what I feel like when I look at myself. 

This morning, the swelling was exceptionally worse than usual. When I use my arms a lot during the day or I do any kind of lifting, it exacerbates the Lympedema. It took me about twenty minutes of manual massage to get the lymphatic fluid dispersed throughout my torso so I could put on a shirt. After going through my closet, I finally found one that I could wear. I guess I'll have to donate the shirts that don't have large sleeves to Goodwill and start buying new ones that will accommodate my balloon arms. I do have my Lymphediva sleeves that help compress my arms and aid with the swelling too.

It's so frustrating to have to deal with this physical challenge on a daily basis, but I'm just going to have to accept it and move on. I just needed a chance to rant for a little bit. I'm not normally a negative person. I hope you understand. Surgery doesn't remove all of the challenges, in fact, it creates even more of them. 

I am thankful for the medical advancements that are available now to those of us who've been afflicted with breast cancer. We have so many new and wonderful techniques that can buy us time. Cancer does maim, kill and destroy lives but it's up to us to choose to be thankful to be alive and continue to fight. 

Yes, Lymphedema sucks and yes, I don't like it one little bit, but...it's something I have to live with so I'd better just suck it up and move on. Thank you for allowing me to complain today...it's just been one of those days. 

A week in the life...

It's almost the end of January and it's been a little over six months since my surgery. It doesn't seem like it's been that long,  and I even had to double check the calendar to confirm the reality of that fact. During the past six months, I've been through an awful lot and I continue to have daily trials. It may seem like all I do on this blog is complain, but believe me, that's not my intention. Cancer is tough and that's a huge understatement. Hopefully, you'll allow me to share my difficulties without being judgmental. My purpose in sharing is to give you, the reader, a very clear and realistic picture of what life as a victim of cancer is really like. If you weren't interested, you wouldn't be reading my blog, now would you? So let me tell you what the past few days have been like for me.

Monday, Tuesday, and Wednesday:
These were pretty rough days all around. Tamoxifen has been totally messing with my mind, my body and my spirit. The side effects continue to be a challenge. My main problem is being unable to sleep. Sleeping pills, both prescribed and natural, work for an hour or two and then don't. I toss and turn all night long and have started sleeping in the guest room so I won't disturb my husband. As I lay in bed trying to sleep, I start sweating profusely...night sweats, another side effect of the medication. I change clothes several times a night because of them.

During the day, I have hot flashes. They sneak up on me when I least expect it. For example, Monday I was in the kitchen loading the dishwasher. I was feeling perfectly fine one minute and the next, I felt like Mt. Vesuvius had erupted inside my body. I was so hot, I had to take off my shirt and start fanning myself. I am a cold natured person. I rarely ever get warm because I have no thyroid gland to regulate my body temperature like normal people do. Sure, I take synthetic thyroid replacement hormones, but even they don't keep my body temp at normal. My normal temp is 97.1 or lower while most normal people register a lovely 98.6. So when I get a hot flash, I mean it's HOT. The hot flashes come and go, thank goodness they don't stick around for more than about thirty minutes at a time.

I had several emotional meltdowns. Poor Phil! He tried so hard to comfort me and he is so sweet! He would look over at me and see the tears welling up in my eyes and immediately come over to hug me and tell me everything was going to be okay. The meltdowns start out small and then escalate. I don't have to be thinking about anything in particular and the tears just start flowing. I'm sure it's the medication because I'm normally a happy go lucky person. Feelings of hopelessness and despair overcome me and I feel like I'm losing it. I tell Phil I can't take it any more and that I'm going to stop taking the Tamoxifen. I don't like feeling out of control.

I also don't like the yeast infection that has suddenly appeared...another medication side effect. Tamoxifen messes with your body's Estrogen levels and that throws everything else out of whack. So I began drinking Bragg's Apple Cider Vinegar and got some over the counter meds from the drugstore that should help fix the problem.

Thursday:
I call my oncologist's office to tell them Tamoxifen is messing me up big time. While I'm talking to the nurse, I burst into tears. She consoles me and tells me it's going to be okay. She says she'll talk to the doctor and call me back. Later that afternoon, I get the callback. The nurse tells me that my doc wants me to stop taking Tamoxifen. I didn't dare tell her I already did! She says we'll discuss new medications at my appointment next week. I hang up the phone relieved that I now have official approval to stop Tamoxifen.

By Thursday evening, I'm starting to feel normal again...well, when I say normal, I mean pretty much my usual self B.C. (before cancer). I enjoy the evening without any meltdowns, hot flashes, or night sweats. The yeast infection is still here and is very bothersome (another side effect of the medication) but I can handle that.

Friday:
I'm feeling much better and wonder if it is possible to not take any more medication. I want to ask my oncologist if this is a possibility, but I know the answer before I even ask the question. He'll tell me that we want to be sure and keep the cancer from recurring and in order to do that, I need to take medication.  It sucks! I don't want to have to take medication for the next 5 to 10 years but I have no choice.

Although I'm feeling better physically, I don't feel great. I still have to deal with the lymphedema and now the yeast infection. There's no way to describe the discomfort I feel other than to do a little rant here so be prepared... I'm so sick and tired of having fat arms! My arms are so swollen that I can't wear hardly anything in my closet. My arms swell up and get so tight it feels like my skin is going to burst wide open and there's not a thing I can do about it other than wear the compression sleeves. So now, I have fat, swollen, hurting arms and a crotch that feels like it's on fire. But I really do feel better. At least I'm not crying about it! At least the emotional meltdowns are over! Now I just want to hit something!!!

And to top it off, I feel forgotten. There I said it. I didn't want to have a pity party here but I'm having a tiny one anyway. When I first was diagnosed, people I hadn't seen or talked to in years called or sent cards to let me know they were so sorry to hear my news. I felt so loved and cared about. For the past few months, not a single card or call have come in. I still need encouragement, even if it has been 6 months since my surgery. I am still struggling and I guess I will be for some time. Cancer is the gift that keeps on giving, as one of my fellow survivors says. You can't just forget about it and move on. It's always with you and the thoughts of recurrence are always in the back of your mind. No matter how hard you try, it's always there reminding you of its presence.

So you see, it's still a daily challenge. Oh yes, I'm thankful that I'm alive and I'm thankful every morning I wake up and see another day. I am so very grateful that I'm still here...but cancer is not easy...definitely not easy. But I keep fighting, it's all I have left and I won't give up even if I feel like I have no fight left in me...

©bonnie annis all rights reserved