Constipation Cure

Because I'm on so many medications, I am not only trying to fight dehydration but I'm also up against constipation. I'm drinking at least 8 glasses of water a day and I'm juicing 32 ounces of carrot juice and 32 ounces of green vegetables juice which is helping me stay hydrated -- but constipation is what I felt all week long until my close friend brought over her famous paleo pancakes. I should have known these would do the trick but with so much on my plate I forgot.

Other solutions the doctors recommended for me included prescribed meds, Miralax and prunes but these did nothing for me.

This girlfriend paleo pancake recipe works at any meal or snack. And it is the recipe that not only tastes great, it unclogs the system.

Ingredients for "My Girlfriend's Paleo Pancake":
I cup almond meal
1/2 cup flaxseed
1/2 cup coconut oil
2 bananas
1 cup blueberries
2 eggs
1 teaspoon baking powder
1/2 teaspoon salt

Instructions
Mix dry ingredients in one bowl. Mix all other items in another bowl. Pour the dry ingredients bowl into the wet ingredients bowl. Mix.

Heat up about a tablespoon of coconut oil in a pan. Pour small amounts if batter onto the pan (roughly 2 inch size). Cook like pancakes-- then store like bread in the fridge. I reach for a couple anytime I'm craving a snack -- or I'm looking for a constipation cure.

First Appointment: Medical Oncology

Today I went to meet my medical oncologist for the first time. The goal was to review the pathology report of my bilateral mastectomy of last week. In that surgery 15 nodes were also removed and biopsied after the sentinel node tested positive for cancer once the breasts were removed.

I was prepared by my oncology surgeon. Over the past month she also stayed hopeful that my breast cancer would not have spread to my lymph nodes. All the imaging and testing pointed to a low chance of having cancer in the nodes, too. Of course the gold standard is the actual testing of the nodes during the mastectomy. She did tell us if cancer is there, too, it's almost a guarantee for chemo due to my many factors including age --44--, my aggressive and invasive tumor size (bigger than a quarter), my non invasive cancer size (almost 3 quarter coins size), and whether the lymphatic are affected or not. Cancer survivors at the two meetings I attended echoed these thoughts.

My case is somewhat complex in that they really didnt expect cancer to have invaded other regions due to my imaging and testing results. My medical oncologist and cancer surgeon are presenting my case to a tumor board for second opinions and discussion. So far The course being recommended for me is 4 rounds. This means for 4 months I'll go in to the clinic for a chemo infusion designed for me. They said my hair will fall out at around day 10-- which makes this by the end of March. Honestly this doesn't bother me because I'm focussed on staying alive and the love of family and friends. I'm grateful for positive thoughts, positive energy sent my way, and prayers.

Me at the oncologist office before the appointment:

Pretty In Pink: Girlfriend's Hospital Bag Recommendations

Pink is not only the color of hope, it is the color of pretty -- something every girl should feel.

The following items not only come in shades of pink but are great for the hospital bag that follows you post surgery.

Slippers in any color work -- but pink is extra special for an event like the mastectomy:

When heading home after the hospital, it's nice to have a place to hold things -- especially medication (or wedding band since my hands were swollen from the experience):

Messy, knotted hair can be hidden in a hat -- which can be useful later as well:

Hydration is super important. Water in a non-plastic container (below = glass) and in the color pink reminds me of the fountain of hope:

Hospital pajamas are not the most comfortable -- so if loose ones (again in pink for the occasion) in a comfortable fabric works, then I sleep better. My favorite comfy mix of pj fabric is one that uses 95% rayon and 5% spandex, like those made my Anne Klein (stores like Ross and TJ Max have these cheap). This fabric is especially comfortable for variable temperature nights -- like when one is having  hot flashes (which is what might happen to me. Women going through chemotherapy get kicked into menopause):

Wearing a scarf dresses up any shirt. And this one has buterflies....

Bathing alone is just not only not allowed (nor would I even want to fathom it) but not possible. Everything from waist up is just not the same -- including the arms that do better still and on the side. My blogger app is kept just at the right angle for typing in this blog). In any case, a loofa-like sponge will be helpful for others trying to help me wash my face or sponge bathe:

A hat for hospital follow-up visits will help:

Any shirt to be worn has to be loose enough to slide the arms in and not have anything against the chest. This is just survival for now:

Hair washing during recovery will be few and far in between (if friends or family can help, great -- but with my mop of hair it will be an ordeal for them. Thinking a trip to Supercuts for hairwashing only will do the trick). In any case, since I have lots of hair, something holding it up during sponge baths will help. This item will do the trick:

Any underpant that is hard to get on is just not worth it. Lose, boy short style underpants will help feeling clean:

First Hair Washing: Supercuts

Today was my first hair wash in a week so I decided to treat myself by letting someone else do the job. This was especially great because we told the hairdresser at our local Supercuts why it had been a week which opened a huge space in her heart for me. I could feel the warmth of humanity in her hands that slowly, carefully and joyfully massaged, deknotted, conditioned, shampooed, and dried my hair during my one hour treat. This competes with every best experience out there. I felt amazing!

First Post-Op Appointment: Drains

In all honesty this is not a fun appointment. The drains -- or surgical tubing -- attached to the sides of where my breasts used to be are stitched in on each end. I have four drains -- so two drains are stitched in on the right side of my body; two on the other. On the opposite end of each drain there is a bulb-like plastic container (which a now friend and cancer-survivor calls the grenade) ends up holding all the breast and lymph fluids. Blood and water mix. These are cleaned -- or 'drained' -- three times a day and measured for the doctors. Each time these are drained it feels like salt and water being thrown into the stitches. This particular appointment (in which the gauze is replaced and the stitches are checked) doesn't add much to the fun of it. But despite all the aches and pain that go along with cleaning drains and regausing them, it does go quickly. Really it does. The doctor mentioned these stay on between 2-4 weeks which I'm sure will also fly.

When I changed into my client clinical wear, I started to get too serious. Here, my husband snapped a picture of me in deep thought. As soon as he said I looked presidential I laughed and smiled in the next shot. Humor helps me get through these moments.

My Hubby's 40th Birthday

We had a great day celebrating this special day. From Ragnar teammates running three times in one day (our once a month preparation run) to family and friends stopping by -- it was memorable ;)

Post-puke: What to eat or drink after vomiting

I woke up this morning puking after forgetting to have something to eat with the antibiotic of the previous hour.

My mom kept wanting to shove toast and butter down my throat but I told her I can't eat those things. I'm both dairy and grain free. So I asked my husband to google what to eat after you puke -- and whatever the answer was then look for a paleo alternative (no grains, sugar, no dairy, no legumes).

This is what he found:

Bone broth
Chamomile, ginger tea
Coconut water
Peppermint tea
Lemon ginger tea
Honey by itself or in tea
Vegetable soup

We have all the above; The tea worked well for me. And now I'm ready for soup.

Medication App

I learned my pain threshold at this stage is about 3 hours. When I take my pain meds every 3 hours I feel ok. But last night when we slept past a three hour point without meds it was brutal. Then it takes about an hour to get back to moderate pain.

So my husband found a great app to keep us on schedule. It alerts us for each of the meds and reminds us of dose or procedure. I love this day and age of smartphones - it helps the healing process in many ways.

Breast Cancer Documents

Keeping track of cancer-related appointments and documents help keep sanity. The following spiral organizer with pockets is an example of just one months worth of information regarding tests, imaging, and cancer team of cancer surgeon, cancer reconstruction surgeon, radiologist, pathologist, oncologist.

The tabs I created for my binder include:
1. reports and labs -- for labs, there will be many of these. Mine are looking good with the exception of slightly low WBC. For reports, this is where I store my results from MRI, PETSCAN, Mammograms, biopsy, ultrasounds, x-rays, lymphatic mapping, genetic testing, mammaprint, etc etc etc

2. appointments -- aside from knowing when to go for what, it's nice to keep a long list to compare for insurance purpose.

3. support groups -- a much needed person, place, thing. These survivors ahead of me have paved the path and I plan to learn as much as I can so that I can then be on that survivor side and help others.

4. doctors -- these are for the doctors for recommended by friends and family (FB is amazing! I was lost until I posted my cries for help...forever grateful). And, eventually it becomes my core team of doctors that will cure me and guide me on this path.

5. vitamins -- I'm learning so much in this area. This will be a place to store order forms and info.

6. medical bills (our insurance covers 80%; one MRI, for instance out of pocket amount of 20% we paid is $900 whereas insurance covered the other 80%. The PETSCAN out of pocket portion was $1,100....I can see it's going to get ugly....)

7. signed consent forms ... many of these

8. resources -- anything else I get and don't know quite what to do with yet...

Recommended Books related to Breast Cancer

In addition to cancer cookbooks, the following are cancer 'knowledge' books I ordered on amazon. These have really helped me understand the disease and following treatment.

Hospital Bags To and Fro: Luggage and Mastectomy Drains

This post is about items I needed packed in my hospital bags that's helped throughout the stay and then will continue to be useful for the next week or two. In particular an item I'm grateful for is a drainage holder.

A drainage holder is something that lets me put the drains that they placed on me during surgery. These drains, tubes with hand-sized plastic bulbs on the ends, run under the arms at the level of the breast. The tubes and end-bulb allow for fluids to drain out of the site of incision. The purpose is to prevent or minimize infection. When lying down these just sit untangled on my belly or next to me on the bed. Kinks are removed to avoid fluid clotting in the tubes. Clotting in these tubes would contribute to infection which is not ideal. There is a ritual a few times a day in which someone pinches the end closest to the incision with one hand, then uses the other hand to squeeze the stagnant fluids into the bulb (one cancer survivor friend called the bulb a hand grenade). Then the bulb or grenade gets emptied into a measuring cup. Not only does this let the body drain the fluids that need a place to go, the measuring cup content is recorded to keep track of patterns -- like more or less fluids, lighter or darker, thicker or thinner. Temperature is also taken to make sure I'm not fighting infection. Im supposed to call the surgeon for any sign of infection.

So getting back on topic -- the drainage 'holder' lets me stand and move around freely without these dangling from incision site. If these pull they hurt.

Any holder for the drains work. Pockets, runner water bottle holders, bags. I researched by asking other cancer survivors and by visiting breast cancer chat rooms. One guy recommended an apron and I thought this was a good idea until it started pulling on my chest. Ideally something that doesn't pull on chest is better -- like waist fanny packs.

Here are some products I found in the web.

Pink pockets
http://www.pink-pockets.com/en/buy-now/

http://www.healincomfort.com/

Drain holders discussion at breastcancer.org
http://community.breastcancer.org/forum/6/topic/765404

Other Hospital Bag Items:
Clothes I can slip on easily
More tba


a set of two drains on one side of my body:

Here my husband is stripping the tube. This is done 3 times a day so that the tube does not clot. To strip a tube you pinch the side closest to where the tube is stitched into the body. Then with the other hand you grab an alcohol wipe and squeeze all the fluids down into the bulb (making sure the bulb is open or else the pressure is intense). Once you finish doing this stripping, you pour contents into a measuring cup and record it (along with other data such as thickness, color):

All four drains. One and two are on my right side; three and four are on my left side:

Once the whole process is complete the 'bulbs' or 'grenades' go back into whatever holder is keeping them from dangling on the body (this would not be fun). The hospital doesn't supply this so it's important to have an option when going into the hospital stay post-mastectomy. A camisole is provided for this purpose, however, in my case (and I think in many people's cases) the bags that are sewn into the camisole are not reachable -- and too tight -- even after getting a size camisole that is two times bigger than my size)

Two Childbirths: Thoughts Post Mastectomy

Last week at a cancer support group meeting, a cancer survivor told me that after surgery it will feel worse than two childbirths. She was keeping it real. Unfortunately she was right.

I look back and now think that the reason why a mastectomy with expanders is worse than two childbirths is because you go through all this pain with nothing physical to hold onto in the end.

When I think back to my son's childbirth I remember the pain of pushing and the pain of recovery. I'm sure my cortisol hormone -- the one that acts in fight and stress -- got involved, but then adrenalin kicked in because I knew I wanted the end product despite the pain. So I saw past the pain like kicking in the final 200 meters or turn of a track race or seeing the finish line in a road race. On a good day when I kick in these races I get excited and I flood with love of the sign 'finish'. I fixate on the sign despite the fact my leg, arm, torso all pull in opposite directions until it feels like the muscles lock up. Hence, the name we affectionately give muscles at the end of a race: booty lock. But booty lock doesn't matter because that sign is there waiting for me. And of course what happens after these antagonistic forces work against what is a superb feeling, love, I get runners high. I only get there when I push past the pain with a heart filled with love. If one is missing -- say pain or love -- then I don't get runners high.

In childbirth I got to hold my son and oxytocin -- the hormone that swells you with good feelings such as love -- made all that pain minimal. Even when I delivered my daughter, who died in utero on her delivery day, it felt wonderful because I got to hold her and a strong dose of love just made all bad things disappear.

With breast cancer surgery I didn't feel anything during the surgery portion like I did with childbirth (due to anesthesia), but going in I felt the flood of love from family and friends pulling for me and lifting me through this. It was spiritual and comforting. So I felt ready and eager to get to the other side, the finish line.

I felt like I got to the surgery finish quickly. I remember going in to surgery room saying 'wow lots of lights. That's good -- I want my surgeon to see well.' I talk nonsense when Im nervous. I then got shaky from the nerves but then I was calm again like I was lullabied by friends and family. Once the nurses inserted meds into my I-V i was out. I was far off in some distant world, dreaming. I don't remember specifics but it was like I dreamt I was in surgery and it was over. That went so well. Oxytocin.

BUT once meds wore off it was like the scene in Hunger Games where the protagonist, Katniss, thought that the battle was over -- all enemies were dead, it was time to go home but then the dead returned as wolves clawing at her up a structure called a cornucopia. Well, without meds it's not far from the truth. Luckily my meds came fast and then I was out fast.

Once I woke up my husband said he wondered how much I was there and not there. He gave me the example of my sister calling. In that conversation he said to my sister "I think she's asleep." and I signed 'no.'

Signing has been so good to me during this hospital stay. Because it felt like I had huge weights putting pressure on my chest and it hurt to breathe -- especially the breathing needed for conversation -- I either didn't sound intelligible due to low volume with my speech or I was approximating my words. It was hard to talk with my voice too because I had a tube in my throat for surgery; soreness in the throat comes from intubation. And because of all the drugs the inner lining of my mouth stuck to my teeth. Signing enabled me to communicate with my husband as interpreter -- once I was passed the puking stage and I was more conscious. Through sign I was able to explain when I needed something or describe my pain to nurses when they did their periodic checkups. They wanted subjective words and number scales. My husband said I would sign "she's going too fast...Have her slow down...I need a transition I can't just roll and sit I need help to first sit then help to slowly roll... Did you see that nurse walk in with her gloves then touch everything in the room -- including her nose-- before touching my iv meds... Please tell her to change her gloves...". Clostridium dificile (c-diff) runs rampant in hospitals and one theory is some health practitioners forget that when they put on those gloves -- it's to keep both patient and practitioner safe from germs. C-diff is nasty and will eat at your intestines. It can kill you, especially if your health is compromised. Unfortunately some nurses gloves touching everything doesn't help. It's not everyone but, as I learned from working in clinical settings, it is a problem especially If they see so many different illnesses during their shifts.

The first 24 hours wasn't easy but it passed. Throughout recovery of day one I felt the antagonistic pain from what felt like a fifty pound weight on my chest and raw skin with alcohol on it. There are two drains on each side and these sting. I remember being wheeled out sounding drunk and trying to say through my slurs 'I feel pain, pain...meds I want meds.' But overall in many ways it was like standing in the ocean waist deep and looking all around me and seeing peace for about two hours then being pulled in the undertow of a wave for two hours. Gradually being pulled under got spaced farther apart to 3 hours, 4 hours and soon 6 hours. It corresponds with medicine wearing off.

Lymph Nodes
The bad news is that I had cancer in my sentinel node so more nodes were removed for the biopsy. This also almost always means the next step is chemotherapy. But I can still be hopeful. Starting monday see all the doctors -- cancer surgeon, reconstruction surgeon, oncologist, radiation therapist. For now I'm not going to dwell on the next phase. I'm going to enjoy this victory of a successful surgery so I don't even want to think about next week until next week.

Going home
The doctors goals for me for today was control pain and walk. Pain was controlled by about 24 hours. Coordinating movements was hard the first 10 hours. I remember looking at a glass of water and in my head telling my arm to reach for it. There was a disconnect. Same with all actions from saying something to swallowing to peeing. But when things came around it happened at an exponential rate. I'll get to go home in the morning in time for the weekend -- and my husband's 40th birthday.

Thank you thank you thank you to my family, friends, community -- I got through this with you!

Boob Voyage: Mastectomy Day

When I get really scared, prayers help calm me down. And sometimes humor does, too. This is why when some of my friends threw a 'boob voyage' party this weekend I was excited for the opportunity to breathe, laugh, and enjoy the ride. We played some fun games that did a great job of keeping my head in a positive place. My favorite of these games was identifying the boobs of famous celebrities (or the other way around, put a face on the famous boobs. Hilarious, fun; I'll have to post those pix on another post sometime. One of my close friends also had an awesome shirt made. It says what I feel and I'm so grateful. It's like a race shirt -- and this is something I can identify with as a runner. It will be the biggest race of my life). The party was like a shower -- to acknowledge the circumstance, to honor a job well done, and to bid farewell to a part of my body that has fulfilled its function. I've grown these puppies for the past 35 + years, I remember my first 'training bra', my first 'jogbra', my first 'nursing bra'. Each presented a different set of memories in the life of a girl and a woman. I'm grateful for each stage because I hold the memories -- and this is something that can never be taken away from a woman who is in this circumstance.

Photos: I generally like photos of other people vs my own. But I want to remember this -- and maybe someday this will give someone else hope. So, here they are:

My last day of this chapter:

My current feelings and race shirt:

My best job ever:

Cancer can take tissue but I'm going to fight it and hold onto everything that matters, everything that is dear to my heart and mind. And, I'm grateful that we are at a stage in humanity that at least there is a solution. Not the funnest solution, but one that keeps me alive so I'm so darn grateful for this. I'm grateful that I had a deep, restful, peaceful sleep. I woke up taking a deep breath -- and I know this is not me on my own. I feel the strength of people sending me thoughts, good vibes, positive energy, prayers, hugs. I feel this overwhelming feeling of love that will get me through this -- especially as my mind sometimes tries to go down a different path, or when my body starts to shake from nerves. I know it's the love of my family, friends, community that will get me through this. I'm grateful beyond any words I can express. I hope to emerge on the other side stronger, wiser, helpful and a contributor to my community which spans different circles -- including my newest community of cancer fighters and ever so hopeful cancer survivors.

Check in time this morning for surgery: 6:30 am

Surgery time this morning: 8:30 am

Total estimated surgery time: 5 hours

Last Pre-op appointment: Lymphatic Mapping

I'm about 15 hours away from surgery and I'm waiting for my husband to bring the car over to pick me up. I just finished my lymphatic mapping test. In some ways I'm glad I didn't know what it included; but in most ways I wished I knew more ahead of time.

The lymphatic mapping test involves a radioactive material injected into the area below the nipple. I think this is the first time in what feels like a long time that what I have is real. My eyes got hot and quickly filled with tears as the isotope was injected. Painful in that it felt like rubbing alcohol was poured onto an open wound on the chest. But fortunately the pain became numb. I'm not sure whether if this part would have made a difference in knowing ahead of time or not. What does make a difference in the life of a mom of a young child is the fact that I carry radioactive material. It's ok to hug someone briefly, but I can't let my son sit on my lap and hold on to me. So my plans of holding onto my husband and my son tonight while we read a book will have to change. I wasn't prepared for this. I wanted one more night -- our last cuddles as a wife and mommy of a 7 year old. I just have to adapt my plans and know that sometime this year I'll be able to hold my son and pick him up as an 8 year old. I think, though, I'd recommend to physicians for future patients to be aware of procedure implications.

About the lymphatic mapping:
I undressed from waist up, positioned myself on a thin bed of what looks like a variation of a CATSCAN machine.

Once I was on my back and comfortable, the technician cleaned the area with a specific solution. She then brought out a thin needle and injected a radioactive material that the camera of the machine would pick up. The camera is called a Gamma Camera and it uses gamma rays to pick up the radioactive material. From this, an image is displayed on a computer monitor which maps out my lymphatic system. Everyone's is different. Some have more areas spread out under the arm in the axilla; others have the system more spread out in the chest. And in particular for breast cancer, the surgeon wants to identify the sentinel node of the lymphatic system.

Once the technician found the sentinel node, she then marked it with a permanent marker so that the cancer surgeon can identify it in order to remove it during surgery and hand it over to the pathologist who looks at it under a microscope in order to find out if cancer invaded my lymph system. This part I was told takes about ten minutes. If no cancer there, then the cancer surgeon proceeds to remove the breast. If there is cancer in the lymph nodes -- also called nodular cancer -- then more nodes get removed hence the importance of lymphatic mapping. And, if there is cancer in the nodes then it's a guarantee for chemotherapy portion of the treatment plan. If no nodular cancer then there is a chance I may not need chemo; in this case I would have radiation and hormone treatment.

The lymphatic mapping from start to finish was about an hour. The nature of the test and the fact that it's the same check in area for tomorrow's surgery made it all so real.