Christmas after cancer diagnosis

Christmas is a good time to be surrounded by loved ones or to feel loved by our global circle of friends and family.

The first Christmas after a cancer diagnosis can be an emotional time. We have done all we can (and continue to do so) to rid our bodies of cancer cells and make it much less likely to recur. At this time of the year the breast cancer sisterhood on dedicated breast cancer social media sites reaches out with good wishes and prayers and encouragements for things to get better or not to get worse. Some women post Christmas wishes, but their loneliness in their struggles can shine through.

We reflect on where we are, such as constantly watching out and being careful about activities. We can be easily frustrated about not being able to do things that we wouldn't have thought twice about before. We are worried about not having the same energy level as previously, or we may be battling side effects from medications. 

We reflect on where we were, and it fills us with astonishment how far we have come. Here are a few reflections on some practical experiences from the gym:

• needing a pillow under the seat belt straps to protect the scars when driving to the gym
• needing a shoe horn to put on weightlifting shoes, because bending forward after a mastectomy is painful
• needing great abdominal strength, so that lying down to rest and recuperate and getting back up is easy during the training 
• needing a helper to carry 10 kg weight plates and set up the rack to get ready for back squats every single time
• Being super, super grateful for the presence of other weightlifters, encouraging, helping, showing interest.

Christmas season is the time we can offer encouragement to other women with breast cancer, sharing our experiences and our paths, we can listen and offer our cyberspace presence, and hopefully alleviate some of the loneliness. 

We also need to give ourselves permission not to be Superwoman to clean, cook, bake, shop,  and prepare for the Christmas celebrations. Forge new experiences or new traditions by having faith in others and letting them do things their way!

Enjoying massage at 7 and 8 months post mastectomy

Getting a massage marks another milestone in recovery: I can lie on my front!
At 7 months post mastectomy I received my first full massage and know for sure I can lie on my front without discomfort. I didn't try before as I have been sleeping on my back since the mastectomy.
There are a couple of things to be aware of:
1. The fascia of the pectoralis muscles was removed during surgery. Thus deep tissue or trigger point massage is not a good idea on the chest! Lighter strokes and going deeper within the comfort level feels wonderful.
2. It is nice to have someone else do a scar massage. After initially worrying about it, I stopped doing anything special (other than acupuncture). My scars are healing very well. The scars are almost gone under the arms, where weightlifting training activates muscles. On the right side (where the lymph nodes were taken) it looks even better. This is the side where I regularly do self lymph drainage massage.
3. Seven months marks also the time when the edema on the right has resolved, or a fluid accumulation occurs rarely.  The first 6 months post mastectomy I had edema almost all the time, during the 7th month it was less frequent, and hopefully it has disappeared now at 8 months.  This was a considerable worry and annoyance as general guidelines point to weeks instead of months. But then again I was always hypersensitive about it ("excessively worried").
Looking forward to my next massage!

In the work place

For a few weeks after mastectomy I was fortunate to be able to work online at much reduced hours. It was very helpful to devote time to recovery and taking frequent naps. So it took a while before seeing my colleagues (mostly male) again.

One decision before returning to work after mastectomy is about looks. I love the breast-free feel. I don't like bras unless they are super comfortable and I can breathe and expand my rib cage.  I had so gotten used to being breast-free in just 9 weeks post surgery that wearing breast prostheses felt like trying on high heels as a little kid. Neither my husband nor my son cared.  So before going back to work I made the decision not to wear breast prostheses. Everybody would just have to get used to my fabulous new physique. In the weeks away from the office I lost a lot of weight by watching my nutrition and spending much time in the gym. To recover from surgery and combat side effects of Tamoxifen it helps to 1. exercise often, 2. drink a lot of water, 3. eat plenty of greens, and 4. sleep.

After returning to work a few colleagues felt sorry for me because of the breast cancer, they probably thought the weight loss was due to the cancer treatments.  But the overwhelming reaction from my colleagues had to do with how fit (and slim) I looked. They were impressed and envious.  So timing the return to work this way was a great boost to the ego.
Beyond my immediate office environment it was a study in communication networks. People don't notice a flat chest, unless they know about the mastectomy. So when someone stared at my chest, I knew that they must be well connected to the grapevine.
More recently, my colleagues found out about my weightlifting successes, and found it interesting and inspiring for themselves. So now they can see me without thinking about breast cancer. And it is less on my mind also.
I did ask for a lighter work load and made sure the key people knew that I am less energetic at the moment and am dealing with tamoxifen side effects. So hopefully it was understood and forgiven when I skipped committee meetings. After 7 months I still have less energy, although every week brings improvement. It is astonishing that even though I felt recovered when I first returned to work, I clearly notice how much better it is now from only a few weeks ago. And weightlifting keeps getting better and better. It also helped to have a thick exercise mat that can be folded up, and a pillow. This is so that I could lie down to take short naps (and I did fall asleep briefly sometimes even weeks after going back to work).

American Masters Weightlifting Championships 2016

This is exciting: 2nd place at the American Masters Weightlifting Championships at 6.5 months post mastectomy. And I was able to lift more than at the Worlds one month ago. My shoulder stability is improving.

Being confronted with having to do my own warm-up timing was daunting, but I gained confidence in doing so. It would be great, if at all competitions an updated start list with declared starting attempts would be easily accessible to lifters and coaches.

#BreastCancerRealityCheck

The hashtag  #BreastCancerRealityCheck is currently used on Twitter to add some reality to the pink ribbon party the breast cancer awareness month October seems to have evolved into.

Awareness what breast cancer may mean for weightlifting:
1. Dealing with continued swelling due to an interrupted lymph system: learning lymph massage, learning kineseo taping, having to wear compression shirts, avoiding upper body strength exercises, or any exercises that lead to increased swelling.  Lymphedema sleeves are not allowed in competitions.
2. One may need to argue about long sleeve compression shirts in competitions. They are allowed according to IWF rules, although not everybody knows this.
3. Getting a Therapeutic Use Exemptions (TUE), since breast cancer drugs are on the forbidden list in and out of competition.
4. Suffering through side effects of said breast cancer drugs that will lead to inferior performance in weightlifting.
5. Figuring out clothes: women's don't fit after a mastectomy,  and men's can be too wide in the shoulders while being too narrow in the waist.
6. Being grateful for any services that are offered at no cost. Out-of-pocket health care related costs amounted to close to $5000 this year.
7. Of the 221 women registered at the World Masters Weightlifting Championship, 27 (=1 in 8 is the rate reported for US women) are expected to get invasive breast cancer during their lifetime. Little do they know. Bad things happen even with positive thinking, healthy life styles, or low cancer risk.

World Masters Weightlifting Championships 2016

Achieved my hope and focus during the recovery: to compete in the World Masters Weightlifting Championship.
Result: 4th place, lifting a total of 100 kg. This is 10kg less than before the surgery, but it is awesome to be able to do this 5.5 months post mastectomy.
I am so very grateful to be able to be at this event and participate, and be a good example.

Do long flights increase the risk of lymphedema?

Recently I traveled oversees on a 7-8 hour flight. I did not wear a lymphedema sleeve. I don't have one. I do have a long-sleeve compression shirt that I carried with me for weightlifting training. But I did not wear this either. Instead I frequently used lymph massage, just in case. When traveling one has to be careful about things surrounding the flight, rather than air cabin pressure. Namely being careful with carrying too much stuff or lifting heavy luggage, making sure to move, and staying hydrated.

Air travel and lymphedema has been looked at in an observational study for women treated for breast cancer traveling to compete in dragon boat races in Australia. There are many factors, such as wearing lymphedema sleeves, cabin pressure, hauling luggage, medications, and more. The conclusion of the authors was that air travel did not cause significant change in BIA ratio (to check on increase in lymph fluid) in the ‘at-risk’ arm for the majority of breast cancer survivors who participated in dragon boat racing, and that the wearing of a compression garment for women without lymphedema was unlikely to be advantageous or harmful.

Reference: Kilbreath et al. Effect of air travel on lymphedema risk in women with history of breast cancer Breast Cancer res Treat 2010; 120:649-654

How long does it take for the strength to return for olympic weightlifting?

It is now 5 months post surgery and I am pushing the boundaries by lifting heavy.

In summary:

1. My technique has improved, I can squat deeper, my overall strength is good, comparable to pre-surgery or better.
2. After about 4 months the proprioceptive sense adjusted to my new physique. 
3. However I am not able to lift as much as before surgery in either the snatch or the clean & jerk which are whole body movements.

Muscles in shoulder, chest, and arms are weaker compared to my overall strength. It was not possible to train them as much as the rest of the body due to persistent swelling under the arm where lymph nodes were excised. There continues to be numbness on that side. A small imbalance will shift the bar slightly, when the weights are heavy, and then gravity will finish it off. At lighter weights strength can compensate for the difference between sides.
My theory: The strength differential between right and left could be due to nerves (numbness) or scar tissue weakness (longer scar on that side).

Even with these post-surgical weaknesses I am seeing improvements across 2 week time frames.

Exercises to strengthen shoulders and arms that do not effect swelling as much are vertical presses, such as behind the neck press or shoulder press. Hanging from a rack is useful, too.
During a training session increases in small increments can lead to success at a maximum weight, but having too large jumps can result in failure at the same weight (2kg increases instead of 5kg). "Lighter" weights may not challenge the muscles enough to withstand the strain during heavy lifts, so weights where I can only do 5-6 repetitions in the press exercises seem appropriate.
A massage of the affected area and around the shoulders may help.

Self manual lymph drainage (MLD) for arm

Lymph massage requires gentle pressure that does not involve muscles. A "stroke" is a circular movement that stretches the skin without the hand sliding, and then the pressure is released, and the hand is moved to the next starting position.

This can be done twice a day, e.g. mornings and evenings (about 10 minutes). The description is for a seated position.

Each stroke is repeated 5-7 times, usually by the hand of the unaffected side.

Step 1: Activate the lymph drainage in neck, under arm, and in groin.
1. Place hand with fingers at collarbone, so that pressure is directed toward the neck.
2. Place hand of the affected arm with fingers directly under the axial of the unaffected arm, the pressure is directed downward.
3. Place hand of the affected arm on thigh with fingers point toward the groin. Circular movements with pressure towards the belly.

Step 2: Redirect lymph flow from affected to unaffected axilla
4. Use hand of unaffected arm and softly stroke with from affected armpit to the other side.
5. Place hand on chest and use circular movements from one side to the other in several placements

Step 3: redirect lymph flow from axilla to groin
6. Lift affected arm and place hand behind head. Use unaffected arm to make circles form armpit to groin in several placements

Step 4: redirect lymph flow from forearm to shoulder
7. Place arm on pillow. Soft stokes covering the entire arm from back of hand to shoulders directing towards the neck
8. Lift arm to side and sue hand to stroke from inside upper arm to outside
9. Place arm on pillow and turn palm of hand upward. Use circular motion towards the upper arm.
10. Repeat outside portion of arm (#7)

Strength training for shoulder and chest muscles

Since muscle fascia is removed during mastectomy and the surgical scars need time to heal, the upper body strength needs to be built up again, and the nervous system may need to rebuild some pathways.

Some useful exercises with light dumbbells are:
1.  Standing: straight arm lifts up in  front then move to side and lower. Reverse the movement.
2.  Bend forward: straight arm lifts from hanging position to side of shoulders
3.  Standing: dumbbells in front of body. Pull arms up, staying close to body, by bending the elbows.
4.  Standing:  dumbbells at the side of the body. Shrug shoulders up, keeping shoulders and neck straight
5.  Supine on a bench: lifting dumbbells to the side and up ("pec flys")
A "light" weight is relative. I use 8 pounds. 2-3 sets with 10 repetitions. Start slow with less weight and less repetitions.

A digital massage gadget can be used by attaching patches with electrodes to the skin, and different programs can be selected for massage or nerve stimulation. If the level is set too high, the muscles contract. With four electrodes both sides of the chest can be stimulated (two electrodes on each side) to see whether there are any differences. In my case, the right side, where the sentinel lymph nodes were removed, can be painful, so a lower level is better.

Yoga

There are many styles of yoga, my own practice encompasses both Iyengar yoga (with yoga props and focus on alignment) and Kundalini yoga (with physical postures and movement, breathing exercises, and meditation).

Stretching exercises by the American Cancer Society advises not to stretch too soon or too aggressively to avoid seroma formation. However I have found stretches to be helpful when fluid built up after drain removal. One possibility are passive stretches, for example placing the arm overhead on a pillow.  The fish pose is a nice chest opener, when it gets uncomfortable to lie on the back for much of the time, and it stretches the scar.

Restorative yoga has been very helpful immediately after surgery and it is still part of my daily practice,  both for relaxation and stretches [ref: Lasater JH]. There are some earlier blog posts with photos: restorative yoga.

For about 3 months after surgery I avoided yoga poses that are static with arms lifted and held (e.g warrior pose)  or weight bearing exercises on arms (e.g. downward dog, sun salutation, planks) due to the lymphedema risk as discussed in the guidelines by Step up, Speak out. Since I continue to get swelling under one arm (site of the sentinel lymph node excision and site of a fine needle aspiration of one of the lymph nodes before surgery) when doing arm weight bearing exercises, I continue to be cautious. Two studies that motivated my choices:

• A Pilates study with 15 women who were at least 6 weeks post surgery mentions the lymphedema risk, since the DVD provided had statically held arm exercises [ref: Stan et al]. Thus I preferred to focus on moving exercises. 
• A yoga study after breast cancer diagnosis with 30 women showed positive effects (relaxation, feeling of wellness, stress reduction) [ref: Pruthi et al]. Participating women had positive comments about the breathing exercises during their initial meetings with a yoga therapist. There are many yoga breathing meditations that may be helpful. A previous blog post describes a breathing meditation from the Japanese system of Reiki.

Kundalini yoga is the yoga of awareness. It should not be confused with weird things written about "Kundalini" on the internet which is a generic term. I restarted my practice 3 months after mastectomy, since it can be vigorous, and I wanted to focus on other exercises and meditations first. My favorite yoga set is the basic spinal energy series. The number of times or length of time for each exercise can be reduced. For example, 26 or 52 instead of 108 repetitions is fine or doing each exercise for 1 minute.  This yoga set includes spinal flexes and shoulder shrugs that are also mentioned in an article for cancer patients to reduce fatigue [ref: Shannahoff-Khalsa DS]. The article includes breathing meditations, but it would be best to find a Kundalini yoga teacher, if you don't have experience with this style of yoga.

References:

1. Judith H Lasater. Relax and Renew. Shambala 2005.
2. Stan DL et al. Pilates for breast cancer survivors. Clin J Oncol Nurs. 2012 Apr;16(2):131-41.
3. Pruthi S, et al. A Randomized Controlled Pilot Study Assessing Feasibility and Impact of Yoga Practice on Quality of Life, Mood, and Perceived Stress in Women With Newly Diagnosed Breast Cancer. Global Advances in Health and Medicine. 2012;1(5):30-35. [link]
4. Shannahoff-Khalsa DS.  Patient perspectives: Kundalini yoga meditation techniques for psycho-oncology and as potential therapies for cancer. Integr Cancer Ther. 2005 Mar;4(1):87-100. [link]

Scar management

"It is easier to prevent a scar than to reduce it once it is formed. [...] Scars can take longer to heal if not managed." (Kase et al)
This is interesting.  After sleeping or resting in one position for a longer period of time post surgery, it felt like the wound/scar is "glued on wrongly". This is likely the effect of collagen formation. Doing something that aligns the collagen properly may help the healing so that the scar integrates well with the skin and prevents future contracting. An example, of a scar not integrating well with the skin is a hypertrophic scar, that has a raised, red appearance.

A few approaches (more here: scar minimization):

• Scar massage means using fingers to stretch the skin/scar vertical, diagonal, and pulling the skin in opposite directions to either side of the scar. This can be done after the surgical wound has healed anywhere between 3 and 6 weeks depending on sources.
• Mechanical pressure means applying pressure on the scar such as using a silicon gel strip,  using a spoon to push down on the safer and pull along, or using kineseo taping.
• Acupuncture
• Stretching exercises to retain the range of motion.
• Hydration means applying oils or creams, often with Vitamin E to the skin.

Scientific evidence: There is anecdotal evidence for these treatments. But does this apply in general? Scientific studies indicate that scar massage has no effect on scars (Shin et al).  Furthermore, the skin is a very efficient barrier, so creams may not be helpful either. There is a discussion on the importance of relaxation and breathing and complementary therapy approaches to scar healing, but more evidence based research is needed (Zanier et al).

There are no medical protocols for scar management. So it will come down to individual preferences.

What I liked: I have stretched from the very beginning and believe this helped the wound to heal in a way so as not to restrict movements when scar tissue is formed. Acupuncture was part of my recovery, so this may have helped. In particular, there are places where there is NO scar. The acupuncture therapists says this is along the stomach, bladder, and kidney meridians.  I exercise a lot and sweat. It is gratifying that initially numb areas produce sweat after while. I take it as a good sign for healing.
What may help:
I did not know about scar massage until 11 weeks after surgery. However I have not noticed a difference 5 weeks later. But it is something that is easy to do at no cost and won't hurt. Possibly it is helpful to start earlier after surgery. Small Kinesology taping strips vertical or diagonal feel good.
What may not help:
I am not convinced that silicon strips or creams or other commercial products are helpful. The strips cause itching when left on a few hours. They are pricey, using it daily for months and getting new strips every 2 or 3 weeks. I would not buy them again.

Appearance at 3.5 months post surgery: some small stretches where the scar disappeared (along the meridians, see above),  raised and red at other places. I am not overly bothered about the appearance as long as the scar tissue is flexible enough for exercising and stretching. They look good and I wear them proudly. There is beauty in scars!


References:
Kase et al  Kineseotaping for Lymphoedema and Chronic Swelling. Kineseo IP, LLC 2014
Shin et al.  The role of massage in scar management: a literature review. Dermatol. Surg.  2012 Mar;38(3):414-23.
Zanier et al. A multidisciplinary approach to scars: a narrative review. J. Multidisciplinary Healthcare 2015; 8: 359-363

Adjustments to weightlifting training

Background
The pectoralis major ("pec") muscle is said to decrease in function and size after surgery. This may lead to reduced shoulder mobility. The fascia of this muscle is removed during a mastectomy. The reason for the removal is to reduce chest wall recurrence. To close the wound after breast tissue removal the skin is "quilted" to the muscle to reduce the risk of seroma formation.  Do these surgical procedures/techniques impact exercise?

Training observations
At 14 weeks post surgery I am attempting maximum lifts. I feel strong after having practiced more squats, more flexibility exercises, and more core exercises, since surgery. Volume training at reduced weights has been going well. Thus lifting the heavy barbell off the floor works, so do cleans. But the overhead portion of the movements do not "feel right," or do not feel the way it was before. And with heavier weights it becomes more noticeable. Here are a few observations:

1. The removal of the breast tissue creates a different balance, equivalent to 1-2kg weight. Thus muscles need to adjust, the brain needs to learn different signals. The proprioceptive sense can be off.
2. In overhead lifts such as jerk or snatch, the latissimus dorsi ("lats"), the muscle below the shoulder blade, spasms. It may be the case that I lean slightly back (observation 1).
3. In snatch or jerk  the elbow turnover is slower than before and elbows are often bent. Bent elbows instead of the "lockout" can be caused by not engaging the lats properly (observation 2).
4. During a split jerk at max weight, the right shoulder may collapse (possibly also of proprioceptive origin).

Lymph nodes were removed from the right side. There is still swelling under the right arm that can increase a day after exercises that are weight bearing on arms, such as push ups.

Plan

• built up deltoid and pec muscles hoping that this will improve the balance, e.g. with push-ups, planks on foam roller, behind the neck presses.
• strengthen back muscles and increase shoulder blade stability, e.g. GHD hip extensions with  or without weights, Sots presses, Good mornings.
• push presses and power snatches at a weight that challenges the feeling of it not being "right"

Ideas and thoughts from the experts (physical therapists, nurses, exercise science students, and others)

• Daily scar massage helps to keep the scar tissue supple and flexible. 
• Fascia is a protective layer around the muscle. Due to the removal the muscle can become more easily irritated. Nerves may have been damaged during the removal process, and thus the brain does not receive expected signals and needs to "retrain."
• Kineseo taping the pectoralis and serratus muscles can help reduce swelling as it gives a signal to the lymph flow.
• A well fitting compression shirt may support lymph flow and reduce swelling.
• A common problem after mastectomy is rotator cuff tendonitis due to overhead movements when the back is not straight. Namely, if tight pec muscles lead to internal shoulder rotation.

References
Most literature focuses on shoulder mobility after breast cancer surgery. The following two references do indicate the relationship of overhead stretch with back and chest muscles.

Stegink-Jansen et al.  Computer Simulation of Pectoralis Major Muscle Strain to Guide Exercise Protocols for Patients After Breast Cancer Surgery. Journal of Orthopaedic & Sports Physical Therapy 2011: 41(6); 417-426. Link to article

Findings: The overhead stretch produced one of the highest strain for clavicular, sternal, and abdominal portions of the muscle. (=meaning that this stretch uses the muscle more)

Muraki et al. Lengthening of the Pectoralis Minor Muscle During Passive Shoulder Motions and Stretching Techniques: A Cadaveric Biomechanical Study. Physical Therapy 2009: 89(4); 333-341. Link to article

Findings: The greatest length of the muscle is achieved with 30 degrees scapular retraction.

Tips for better sleep

At my recent appointment ("survivorship clinic") suggestions were made for better sleep. This can mean going to sleep, or staying asleep, or getting back to sleep, or sleeping enough hours. I was surprised that the only recommendations offered were listening to soothing music or drinking warm milk. In general, those don't work for persistent sleeplessness.

Up until a few years ago I enjoyed blissfully long hours of sleep, about 8 hours. It was very easy to fall asleep and stay asleep. And when there was a lot going on, all my yoga tricks helped.  But then sleeping hours became more elusive and none of these methods worked. It became especially difficult to go back to sleep after waking up at night. I thought I had to accept that we sleep less as we get older, we should stop stressing, maybe read a little in the middle of the night for an hour or two, or however long it takes. But I changed my mind on this subject. The longer we follow this pattern, the harder it is to get back to the blissful state of sleeping longer hours.  Here are some things I find useful, and I am now back to sleeping 7-7.5 hours at least 2 or 3 days each week instead of just 6 hours every day.

• Acupuncture may help with underlying issues to bring us back to a more balanced state.
• The system of Reiki has a number of practices: meditation (Joshin Kokyo Ho, the precepts) or hands-on healing (do it yourself).
• Tai Chi is a moving meditation, and finishes with a closing movement that is "grounding."
• Getting off screen time about an hour before the regular bedtime (and keeping a regular bedtime). No more food intake at least 3 hours before bedtime,  and nothing "heavy." This time can be used for meditation or some of the other practices mentioned here.
• Restorative yoga puts the body in a fully supported yoga pose such as supported child pose, supported twist, and legs up the wall.
• Washing the feet with COLD water, and rubbing them dry afterwards with a rough cloth, massaging with almond oil.

Caveat: if sleeplessness is due to worry or too many thoughts, then these tips may not be sufficient.

Tips I tried and tested and they didn't work for me: light exercise, intense exercise, weightlifting, soothing music, different kinds of pillows (water pillow, ergonomic pillow, between legs pillow), different types of breathing techniques, tea, warm baths, short meditations (for example, less than 20 minutes), essential oils (lavender, peppermint). All of these are good things, but they are not sufficient to help me staying asleep. I can go to sleep just fine, but wake up at night.
Ear plugs do help somewhat, but some ear plugs are contaminated in the unopened packet, and I am prone to ear infections.

Good luck!

Reiki meditation

One of the most important things on the breast cancer path is to stay grounded. This means we can cope with daily life, good or bad news, and do what is needed in a healthy, balanced state of mind.

The Japanese system of Reiki brings a wealth of meditation techniques that help with achieving this. One of these meditations has been enormously helpful to me: to process the breast cancer diagnosis, to prepare for or go through procedures, to recover after surgery. It is called Joshin Kokyo Ho and is practiced as follows.

Bring your awareness to the point below your navel (called the hara). Set your intent that you want to heal yourself and that you receive whatever you need. Breathe comfortably in and out through your nose.

1. Place the palms of your hands together to centre the mind and set the intent. Close your eyes.
2. Place your hands in your lap, palms facing upwards.
3. With each in breath feel the energy coming in through the nose, moving down to the hara and filling the body with energy.
4. On the out breath, expand the energy out of the body, through your skin, and continue to expand the energy out into your surroundings.
5. Repeat steps 3 and 4 until finished (5-30 minutes, whatever works for you). 
6. Place the palms of your hands together to give thanks.

The description is for sitting to help focus (steps 1 and 2), but lying down works, too! You may fall asleep then.  J

My teacher, Frans Stiene, shares his wealth of knowledge of this system, e.g. grounding

Weightlifting: PAL study

There is not much information for weightlifting athletes who want to return to their pre-diagnosis activities. The research study described below is about small weights, starting with 1-2 pounds (= 0.1 to 1 kg) dumbbells and lowest possible settings on the resistance machines, and increases were in small increments. But there was that no set upper limit for the weight.  Before this women were told not to ever lift more than 5-15 pounds (= 2 to 7 kg).

My theory: strength exercises are controlled movements, where one pays attention to correct form and gains strength. This transfers to normal daily activities, which can be much more complex. It is to be expected that the trained group can do such activities better than the no exercise group, thus leading to favorable outcomes.

The Physical Activity and Lymphedema (PAL) trial assessed the safety of strength training in breast cancer patients without an upper limit on the weight.

Participating women were 1-15 years post breast cancer diagnosis with stable or no lymphedema. There were 148 women in the exercise group (71 with lymphedema) and 147 in the control group that did not exercise (70 with lymphedema). Recruitment was from 2005-2007. The study protocol called for biweekly training, with supervision during the first 13 weeks and unsupervised training the following 9 months. 

OUTCOME: The amount of weight lifted did not make lymphedema worse, the weightlifting group had fewer and less severe flare-ups. Among the women without lymphedema at the start of the study 11% of the WL group vs 17% of non-exercise group developed lymphedema within the 12 months of the study (defined by increase in arm swelling).

PROTOCOL:  The weightlifting sessions lasted 60-90 minutes with 10 min cardiovascular warm-up, followed by stretching, then 5-15 min core exercises (for injury prevention),  strength exercises, and then finished with stretching (for injury prevention). For the strength portion both resistance machines and free weights were used (for muscles of the chest, back, shoulders, quadriceps, hamstrings, and gluteals, as well as biceps and triceps).
If there were no changes in lymphedema, the weight was increased after one week (0.5-1 pound increase). If there was a worsening, exercises were skipped or weight was reduced until symptoms cleared up. If 2 or more sessions were missed, the weights and exercises were reduced due to the possibility of de-conditioning.


References:
Schmitz.  Weightlifting and lymphedema: Clearing up misconceptions (about interpretations of the PAL trial with  7 guidelines)

Schmitz et al. Physical Activity and Lymphedema (The PAL Trial): Assessing the safety of progressive strength training in breast cancer survivors. Contemp Clin Trials. 2009 May ; 30(3): 233–245.

Schmitz et al Weightlifitng for women at risk for breast cancer related lymphedema. JAMA. 2010;304(24):2699-2705

The National Lymphedema Network: Position paper on exercise

Language

Training in weightlifting I am surrounded by Crossfit athletes, who are beasts, badasses, fighters, killing or crushing the next WOD (=workout of the day), tackling the Hero workouts. And there is a myriad of abbreviations to get used to. I love the enthusiasm and zest of the Crossfitters, and the wonderful support and encouragement I have been receiving from them.

Before my diagnosis I had only been vaguely aware of the fighting language in the breast cancer world. The other day I received an invitation to a breast cancer survivorship celebration organized by a local health care clinic. Do I even qualify as a survivor? It has only been two months since surgery.  When can I call myself a survivor, if ever? There are fundraisers to fight the battle of breast cancer.  What can I fight? Is this a battle to be won?

These words seem to imply that after diagnosis, we go through treatments and then it is over. But it is not. Hormonal therapy continues for years. Complications can occur long after immediate treatments, e.g. lymphedema. Breast cancer can recur anytime and does, or it can metastasize. The best we can say is that we are in NED ("no evident disease"). Such language may also imply that somehow dealing with cancer is in our hands. Many women are affected by breast cancer who have various lifestyle situations or choices, vegetarians, meditators, exercise enthusiasts, healthy BMI, younger age. These are factors said to reduce the risk. There is no point to look back and wonder whether we could have done something different. Lifestyle choices  do not eliminate the risk, and should definitely not get in the way of seeking medical help.

Breast cancer awareness month is in October every year. There is a lot of commercialism with pink ribbons. What is it that we should really be aware of?

• Being aware that our bodies, that let us know faithfully when something is amiss, a sore throat or back pain, will not warn us about cancer in the breast. A self-exam or scheduled screening can identify a lump that does not hurt or feel foreign.  
• Being aware that there is an onslaught of information, uncertainty, confusion at the time of diagnosis. And it is good to be prepared for ourselves as well as for family and friends. How many women do we know with breast cancer? Look around, 1 in 8 women, there will be some in our circle of acquaintances. 
• Being aware that we have no inkling that a fun activity or exercise can result in swelling the next day. 
• Being aware what life is like during or after treatment: clothing, hair, changes in our bodies, and more. 
• Being aware that bad things happen even with positive thinking, as Barbara Ehrenreich so eloquently writes: Smile! You've got cancer

This has also been expressed by various bloggers, I'm living with cancer, not fighting a war or Breast Cancer Awareness? Let's get real or The pinking of America or in the book "How to be a friend to a friend who is sick" by Letty C Pogrebin.
And keep in mind  to check out charitable foundations before enthusiastically supporting an initiative, because it may be different from what you thought it was: http://www.charitynavigator.org

Changes

Some exercises feel different, such as lifting weight overhead and stabilizing. Perhaps this is due to a different weight distribution with the breast tissue removed. It may take some time for the muscles to relearn optimal movements. Very cool! Will this make the push-ups easier?

I like the breast-free feel. It is comfortable, especially in hot weather. People don't notice, unless they know about the mastectomy. Or they notice something, but don't know what, such as when I get a compliment how much weight I lost. Of course, I did! JJJ

However  I got a mastectomy bra and breast forms to use for special occasions or when I think I need props (e.g. some work events, but not all the time). I don't like bras unless they are super comfortable and I can breathe and expand my rib cage. I was thinking of going down one size, but smaller breast form sizes apparently do not go well with larger sized  bras (=the breathing requirement has priority). I tried it on at home. I had so gotten used to being breast-free in just 9 weeks post surgery that it feels like trying on high heels as a little kid. My loved ones don't care what I do as long as it works for me. They are keepers!

Weightlifting training 8 weeks postop

First time back with 2 hours weightlifting training 3 times per week. This is week 1 of a 7 week training plan to prepare for competitions.
I am very happy that it works, and much sooner than I had dared to hope.

According to plan this week is a high volume week with many repetitions and sets at a 60-80% level of the maximum weight lifted (prior to surgery).  While some of this is more than I had lifted post surgery so far, I was able to stay close to the prescribed percentages.
This includes snatches (up to 80% max), clean & jerk (up to 85% max).

WEEKLY SUMMARY
TOTAL Weightlifting training about 6 hours
TOTAL Cardio about 1 hour
TOTAL Core: (almost) daily Pilates with foam roller up to 2 hours, yoga class 2 hours
TOTAL Mindfulness practice:  Tai Chi 2 hours, Reiki meditation 6 hours

There is still fluid under the right arm, sometimes more, sometimes less. Less after weightlifting and stretching, more after push-up type exercises.

Do-it-yourself Reiki

A mindfulness practice reduces much stress and anxiety that arises with a breast cancer diagnosis, allows you  to sail through appointments and treatments, and helps you to better deal with hiccups that are sure to come. Best of all, you don't have to be anywhere specific, or have somebody else do it for you, you can do it yourself - anytime!

There are five elements of Reiki: Precepts, meditation practices, hands-on-healing, symbols and mantras, and reiju attunements. Much can be said about each of these elements. Healing starts with our heart and mind. This is embodied in the precepts that are a good starting point as well as an integral part of continued practice of Reiki:

For Today only
Do not anger
Do not worry
Be grateful
Be true to your way and your true self
Be compassionate to yourself and others

By contemplating each one, we can delve into what it really means. As we become more familiar it gets easier to recall these precepts at a moment when we become stressed to help us return to a more balanced state of mind.

More details, further references can be found here: chanting the precepts

There are excellent resources about the Japanese system of Reiki, e.g. http://www.ihreiki.com/.

I am very grateful to be able to continue studying with my teacher Frans Stiene. 

Tamoxifen fears

I felt on top of the world: recovery has been going well, back to almost full load of weightlifting training, feeling healthy and fit, stronger than before the mastectomy, taking more time for myself, possibly putting the breast cancer episode behind me. Maybe I already achieved with this blog what I wanted to do, documenting exercise that can be done post surgery.

There is no such thing as putting breast cancer behind us as many bloggers attest to when discussing survivorship. It stays with us and can recur. There is no way of knowing whether, or when, or how serious it can recur. The unpredictability is frustrating. What can we do? Good nutrition, exercise, keeping a healthy weight are all associated with reduced risk, but there is NO guarantee.  Women with healthy lifestyles get breast cancer.  Our bodies don't tell us. We cannot rely on signals from the body alone and must use our brains. For example, some exercises feel good at the time, but cause swelling later.

I got the prescription of tamoxifen filled. Side effects are mentioned on the pamphlet such as hot flushes being the most common.  While making decision after diagnosis I had searched breast cancer blogs and forums for input from other women athletes to get ideas about exercise post mastectomy, since the general recommendations are minimal. So now I wanted to do the same: looking to experiences with tamoxifen by women athletes  A sure way to freaking out! The positive frame of mind and feeling healthy - gone! Reported side effects: leg cramps, joint/bone pain, plantar fascia,  leg/foot swelling, women stopping tamoxifen because of the side effects. We are worried about how it affects our exercise and competitions.

But I understand the science: a great risk reduction in cancer recurrence. Even in studies with women older than 70. And I am in my 50's - there is time for breast cancer to recur.

What a silly thought: "putting the breast cancer episode behind me".  I will have a daily reminder taking this pill in the foreseeable future.

Sisterhood of breast cancer athletes

At the time of breast cancer diagnosis there is much uncertainty, including about the future of competitive sports. When, what, and how much exercise post surgery depends on extend of surgery, reconstruction or not, post surgical recovery, adjuvant treatment such as radiation or chemotherapy, complications (lymphedema etc), age, fitness level, type of sport.

Recommendations from the medical field are very general and thus of limited use for athletes. This was my motivation for this blog: what is possible over time? At not yet 8 weeks post surgery it is still early in the game, what will I be able to sustain? Where will this path lead me?

We can take inspiration from others who have been there and have made different choices. It becomes clear that breast cancer affects women from many paths and that my first reaction "Huh? Me?"  is common. We are on this road together.

Courageous women athletes:

Jen Hanks, professional mountain biking (diagnosis age 35):  http://athletefightscancer.blogspot.com and her recovery path (http://athletefightscancer.blogspot.com/2017/11/a-little-update.html)
Leanda Keahi-Bevans, weightlifting (diagnosis 52): World Masters Weightlifting Championship 2018 medals

Novlene Williams-Mills, track and field (diagnosis age 30):  http://espn.go.com/espnw/athletes-life/blog/post/14729/competing-olympics-even-cancer
Sonya Byrd, bodybuilding (diagnosis age 38): Confidence and bodybuilding, Winning competition

Ellyn Robinson, weightlifting (diagnosis age 43): Robinson Weightlifting
Dianne Chellew, marathon kayak (diagnosis 45, mets at 64): Breast Cancer Australia Newsletter 2000(page 8) and Masters Games (last 2 pages)

Linda Elstun, Crossfit (diagnosis age 50):  http://wwmt.com/news/local/breast-cancer-survivor-credits-crossfit-with-saving-her-life
Shanna Nasche, yoga (diagnosis age 54): Finding my lost dog: yoga after a mastectomy
Karyn Marshall, weightlifting and Crossfit  (diagnosis age 55):  TedX: Shattering Records and Glass Ceilings
Team of athletes: Dragon Boat racing

There are many breast cancer blogs, written by creative women, not about athletes, but with a wealth of information: The Accidental Amazon, The Daily Breast, Invasive Duct Tales, The Breast Blog in the World, But Doctor I Hate Pink,  regrounding.me, or more: Blog roll or stories

Workout log after the 6th week postop

TOTAL core about 1.5 hours
TOTAL cardio about 1 hour
TOTAL weightlifting training about 6 hours

This is week 6-7 post surgery.

Not included in the daily summary, usually in the evenings: restorative yoga (legs up the wall, supported backbend, supported child pose, stretches), PVC pipe work (Burgener warm-up, pull positions)

May 29 (Sunday):  about 1.5 hours
Cardio: 30 minutes cycling with speed intervals, 10 min rowing
Strength: 10 box jumps, 20 min isolated arm muscles

May 30 (Monday):  about 1 hour
Cardio: 20 minutes cycling with speed intervals
Strength: 20 min isolated arm muscles,  20kg bar good mornings, pulls
                isolated leg muscles

May 31 (Tuesday): 2 hours + 20 min
Core: 20 min Pilates
Strength: skill session on snatch including warm-up

June 1 (Wednesday): 30min
Core: Pilates
Strength: isolated arm muscles

June 2 (Thursday): 2 hours + 1 hour
Tai Chi (1 hour)
Strength: weightlifting training including snatches (total 41), front squats (total 15)

June 3 (Friday): 2 hours
Strength: weightlifting training including clean & jerk (total 34) and front squats (total 25)

June 4 (Saturday): 1 hour
Core: Pilates


Since it added up to a lot, my weightlifting coach suggested to return to the training plan and possibly reduce weight and/or reps. This should make for a more balanced weightlifting training. Starting next week. This is about 3 weeks sooner than I thought I could. I am delighted!

Training opportunities post surgery

A great opportunity presents itself after mastectomy: literally learning the lifts from the ground up.
First I can pay attention on improving the squatting positions and hip flexibility without distraction by more complex movements. Next the pulls (1st and 2nd) are added, and doing these movements incorrectly can immediately be felt in the upper body (stitches...). Lastly the overhead movements are added, and then everything can be put together.
Since the ego won't get in the way of adding weights to the bar too soon, perfection of technique is the primary focus at this time. It is a thrill to make the movements smooth and then fast and faster. Effortless effort.

It is a blessing to have experienced weightlifters cast a critical eye on the execution of the exercises and generously give feedback and tips for improvement.

with Fred Lowe

Complementary health approaches

The National Center for Complementary and Integrative Health (NCCIH) is a great resource to explore approaches and check on latest research. As of 2015 Congress has renamed NCCAM (including "alternative medicine") to NCCIH due to "alternative medicine" being uncommon. There is confusion about these terms, and NCCIH has defined them here:

• If a non-mainstream practice is used together with conventional medicine, it’s considered “complementary.”
• If a non-mainstream practice is used in place of conventional medicine, it’s considered “alternative.”

What are complementary approaches and how popular are they?

There are two subgroups: Natural products and Mind and body practices.

Among US adults in 2012, the 10 most common approaches were:

17.7%   Natural products  (herbs, vitamins, minerals, probiotics)

10.9%   Deep breathing

10.1%   Yoga, Tai Chi, or Qigong

8.4%     Chiropractic manipulation

8.0%     Meditation

6.9%     Massage

3.0%     Special Diets

2.2%     Homeopathy

2.1%     Progressive relaxation

1.7%     Guided imagery

Reference: National Health Interview Survey

It is surprising that with these categories exercise is not one of them, and makes me wonder how exercise for health reasons would rank compared to these.

As of May 30, 2016 I have experience with (length of time practicing/using it):

Yoga* (32 years)

Meditation and Reiki (12 years)

Pilates (12 years)

Chiropractic care (1 year, regularly, previous 8 years as needed)

Vitamins (D3 and B12) (5 months)

Acupuncture (2 months)

Tai chi (3 weeks) 

Other things I did at some point:

Autogenes Training,  duration 1 year, 30 years ago

Alexander Technique, duration 6 months, 6 years ago

Massage, about 2x per year

* This includes deep breathing

Although some of my practices, yoga, Reiki, meditation,  are labeled "complementary approaches", they are regular routines and in my view are part of healthy living, same as exercise, so "complementary" does not seem the correct term.

What is acupuncture like?

A couple of weeks ago I would not have imagined having an acupuncture session, because of the idea of having needles stuck into me. Among complementary therapies, effects of acupuncture has been studied for a variety of symptoms, and many studies have demonstrated benefits. See for example, the summaries on the website of the National Cancer Institute (NCI): Research on acupuncture
It is very important to find a qualified therapist. There are licensing rules in most states (www.nccaom.org). The FDA approved sterile single use acupuncture needles by licensed practitioners.

I came to acupuncture, because there is an excellent therapist in my favorite yoga center.
Liz is compassionate, has experience with treating surgery patients, is well read, and we can talk about many topics: http://www.threemountainswellness.com  In each session she reminds me to eat healthy,  drink a lot of water, has suggestions for sleeping well, and all sort of other cool tips.

The experience of an acupuncture session is individual. Two weeks before surgery I had my first acupuncture session, and was very relaxed afterwards, just what I needed during an incredibly hectic week to get organized with work hand-overs, and to sort out health insurance and doctors appointments. The session was wonderful!
After surgery the experience of every session has been different, sometimes going very deeply into a meditative space, sometimes feeling super strong, sometimes very relaxed, but always balanced.  I regained my shoulder mobility quickly, and believe the acupuncture sessions played a crucial role in this.

The skin is swapped with alcohol to sterilize, and then a hair thin needle is inserted. After all needles are placed, some may be connected with electric wires. Does it hurt? I may have 1 or 2 points that do  hurt at the time of needle insertion. These points can be different from session to session, but nothing is so bad that the needle would have to be removed. Liz is vigilant to make sure everything is going well. And I LOVE it when she leaves the needles in for longer than an hour!
I'll be back!!!　 　

6th week exercise summary and looking beyond

It is not easy to figure out what is the right amount of exercise. Even when you know your body well, and you pay attention, what feels right may still be too much.

After some intensive exercises that included GHD sit-ups, I developed superficial thrombophlebitis across my abdomen. This is benign and will go away eventually (see post on cording). I also have swelling under my right arm, the location of sentinel lymph node biopsy, from chest to armpit to shoulder blade. This is bothersome. It helps to lift the right arm and sleep with the arm up, but fluid accumulates again when the arm is lowered. Due to this (and menstruating for the first time since surgery - unexpected!) this was a light week with a couple of days off or only some exercise. However the following are new accomplishments this week:

• Push-ups with exercise ball
• outdoor bicycling 
• a more "regular" weightlifting training session, including snatches with PVC pipe, strict press, overhead squats, drop snatches with 15kg bar. Then a clean & jerk series with 35 kg. Pulls (snatch grip) with 35 kg, and back squats at 60kg for a 90 minute workout   J   J   J  

I look forward to add more upper body strength next week.
Tip: As much as I was looking forward to NOT wearing a bra anymore, when the barbell touches the mastectomy scar, it is unpleasant! A yoga top with a built-in bra, provides a double layer that may help.

This completes the 3 to 6 week post surgery period. It was unclear from the official recommendations how much exercise one could possibly do during this time and my motivation for this blog. A summary is here: my exercises 3 to 6 weeks post surgery

Official recommendations:

• The American Cancer Society posts only stretches: week after surgery
• The Canadian Physiotherapy Associations says to start strengthening exercises at 4-6 weeks post surgery starting with 1-2 lbs: Exercises after breast surgery  

Unofficial  recommendations: There are blogs and forum posts by women sharing their own stories of recovery and exercise. These are usually slices in time. One blog and Facebook page with a more complete history is by Jen Hanks, who competes nationally in mountain bike races: http://athletefightscancer.blogspot.com

Weightlifting training session with clean & jerk at 35kg @ 6 weeks postop