Crappy

Not that I'm in a crappy mood, but I did want to take this opportunity to talk about cognition and constipation. After all, I'm an educator, clinician and mom so pooping is so relevant on many levels -- especially when it comes to brain function. And aside from having clinical knowledge regarding cognition I now have first hand knowledge of how constipation plays Robbin Hood with it when heavily medicated from a post mastectomy experience.

One of the things I noticed in myself when I was constipated due to heavy meds was that I was so irritable, less patient, less able to focus on multiple level tasks. Tell me one thing in one moment then I forget in the next. Get my attention on some new thing vs thing I'm familiar with (my hubby is a computer engineer so when he talks new paradigms and I'm constipated I can't follow his conversation), I'm lost. I end up staring into space playing I Spy with words I understand all buried in words I don't. It's amazing how much brain function a.k.a cognitive function I lose when I'm a week or two backed up. If you are blessed with great bowels, imagine having to pee so badly while waiting in line at a public bathroom, a portapotty -- or worse, while driving. Gasp. There is no other thing you can handle. That's a close analogy -- now spread that feeling across a week or two;)

I then thought of my son.

My son is very smart. He's also got an old soul. But catch him when he's constipated and he's a different child. He's what I just explained in myself -- hard to focus, irritable, fatigued. Less desirable behaviors emerge. I go through my mental checklist of items "did he sleep enough or well enough...is he hungry...is he tired...is it just ego related to typical development...?" I try finding connections when less desirable behaviors emerge.

Now more than ever I'm finding as soon as he can poop he is back to himself. Cognitive Function comes back. Everything is at equilibrium. Life's good.

Being on the other end of it I pretty much guessed. But now that I'm on the same end I really get it.

There are also disorders in which cognitive levels are affected. Now add constipation and there's a narly party going on in that individual's inner space. That's the take home message.

So what to do with someone with cognitive function challenges when constipation is a contributor? Though my constipation was a challenge post-mastectomy, I really was able to manage the feelings around it because I kept thinking "If I feel it I must be alive!" -- and this has to be good. But from time to time I struggled and I can only imagine that those meds are kindergartenish when compared to the big-boy stuff I'll be getting at chemo. In preparation for those drugs and associated cognitive functioning challenges (with or without constipation challenges), I prepared a list in advance that might help others around me. These are some suggestions I thought of for myself which are influenced from my work with clients who have suffered a traumatic brain injury (eg car accident or football blow), stroke, or the different types of dementia that come from Alzheimers, Parkinsons, MS, ALS, stroke, etc. These suggestions below are influenced from the training I received in speech language pathology:

10. Rephrase things (in case I need to hear it another way, forget the info, or just didn't quite get it)

9. Give visuals or concrete examples (to help memory or attention; specific examples include writing things down, using pictures, signing)

8. Remove distracting items (eg my kitchen sink filled with dishes is a good example. This affects attention -- generally this specific item has to do with messes like dirty dishes or piles of laundry on the bed. This is how I lived when school got tough -- as in having to take lots of tests or write lots of essays so I normally can block this and focus on the important stuff. But since I won't have tests or essays that need to be written while going through chemo AND I'll have chemo brain then I can see how this might be hard. Fortunately my family is learning how to help in these areas.)

7. Remove distracting sounds (loud movie on the television or loud music brings on a headache. Levels of difficulty = images flashing in front of me + too loud = hard to concentrate because I'm focussing my attention on the loudness. All of a sudden I've lost the plot of the tv story or the lyrics of a song).

6. Present items of conversation in a way that the brain does not have compete on a few levels (eg if trying to get out the door to meet time deadline like an appointment we are rushing to, then it's the wrong time to tell a story. Get out the door or tell the story. Not both. Story + lateness + trying to get out the door = 3 levels of brain difficulty. Or if telling a story, slow down since story + speed = two levels of difficulty. If telling a story in an area that I'm not familiar with then story + unfamiliar territory + speed = three different levels of difficulty. Again another attention type of thing. This divides my attention unevenly).

5. Speak in a voice that is calm (this lowers the cortisol hormone in the blood -- the one used to fight stress -- and it keeps my attention)

4. Limit demands or requests (If I'm looking like my body is focussing on recovery, this is one level of difficulty or demand on my body. Conversation on items that don't require me to make decisions is best -- like what's happening in my son's classes or what's on Dancing with the Stars or Switched at Birth. Life type questions like "What will happen to your family if you don't make it?" doesn't help. Demands like "Choose a color so I can paint your house" or "Maybe your son should read more blah blah blah types of books that I like to read because I don't understand why he likes such old types of books" don't fly either (ok, my mom is guilty of these last two. I love her dearly and she's been so helpful but demands or requests for change are so hard on my system. This not only challenges my attention (which is a part of cognitive function) but it raises my cortisol level -- again, the hormone that is used to fight stress. She's learning in this area of weakness).

3. Disguise demands or requests. (here I'm thinking food. Food is a requirement for recovery but if I'm feeling nauseous then requesting a certain item might not only divide my attention -- my focus on fighting nausea + food request -- but it will also raise my cortisol level. Disguising such a request comes in the form of offering options, using a calm voice, giving me extra time to think about it, placing it in front of me or taking it away. I'm thinking what I do with clients and I'm thinking ahead of what I normally can handle versus what I might not be able to handle during chemo.

2. Help on tasks that I can normally do pre-constipation or pre-chemo (think 'cut the person some slack', Thinking 'she knows how to do this' or 'she usually does this' is a gone paradigm in the face of body challenge such as constipation or chemotherapy. Again, I'm projecting into the future of chemo where I'm going to have memory fog plus possible constipation from the drugs. When I work with clients I look around their world in what's going on their life. It might just be a hard day so helping them carry things out -- a subcategory of cognitive function called 'executive function' helps. When it comes to 'cognition' a subcategory of it called 'executive function' is the big mama term that controls the other subcategories of cognition that I'll talk about at some point on my journey. These other subcategories of cognitive function include memory, attention, problem solving, reasoning, planning. Each subcategory then has more subcategories. For example, under attention alone there are then even more subcategories such as the ability to 'switch' tasks eg wash dishes then cook dinner or 'focus' on 'alternating' tasks eg wash and cook and wash and cook or 'divided' attention eg talk and drive or talk and cook etc etc etc. Throw in a time deadline and then the hormone cortisol might encroach on this territory and cause major chaos. The brain is amazing....when it works under ideal situations and non-ideal ones, too).

1. Be patient -- and give me a lot of laughter and love. These make me breathe :)

When it comes to cognitive function these are pretty much attention and memory types of stuff (and executive function) that also sneak into behavior. Understanding how these things play together make the world go round just a bit more in the world of someone whose system is outta wack.

First Stage Chemo Cut: My son's bob

Today I had my first stage chemo-cut (first stage = my son's bob at one week prior to chemo; second stage = my husband's military style cut shortly after chemo day; third stage = my son's bald grandpas, a head shaving roughly at 10 days after chemo in order to compete with falling hair). It was such a wonderful experience. This haircut was a cancer donation for which I'm so grateful. Not only did she do an amazing job, I now think it's an overall good cut for me in the future. I know I'm middle-aged but I don't feel it and the cut still feels youthful.

The pictures below are of the entire process. From one friend also wanting to donate hair to Locks of Love with me to the styling and celebrating...it was a fun experience.

Post-Mastectomy One-Month-Aversary

A month ago today I went into surgery for my bilateral mastectomy. It feels like yesterday in some ways; in some ways it feels so long ago. I hope this post helps anyone out there preparing for a mastectomy; things do come around quickly. Everyone's path is different -- but the sharing other's have done with me has been confidence-building.

Today after my first stage chemo-cut (first stage = my son's bob at one week prior to chemo; second stage = my husband's military style cut shortly after chemo day; third stage = my son's bald grandpas, a head shaving roughly at 10 days after chemo in order to compete with falling hair), I went for a post-op surgeon visit. They all whole-heartedly complimented the haircut. They said that they loved it. I do love it. It really is the best haircut I've ever had.

While changing my old gauze that covered my original drains of the previous weeks and cleaning off my stitches that run about six inches across each old breast area, I told the doctor that right after last week's first balloon expansion of 50cc saline solution it felt like a period in my chest. Crampy, achy, raw. My lungs felt tight and heavy. But just in one week I didn't feel too bad. On a scale of 1-10, it's like a consistent 1-2 versus last week's 6-7-8 pain level. And, today's stitch cleaning felt strange but good. I explained that my breast area felt the way my cheeks feel like at the dental office after being shot up with novacane. It's like you can pinch the numbed cheeks and you know they are your cheeks but then again they feel rubbery and foreign. I don't have much if any sensation in that area. She said if she rubbed a cotton swab across my chest with my eyes closed I probably would not feel it. Pressure on the pecs, however, is a different story. In that way my pecs below my breast area feels like a bone spur -- I've had this in my heal once which is like a gliding of something that also is not supposed to be there. I mentioned trying to shave my underarm pits -- but my right one in which they removed my lymph nodes is very stiff and numb. I couldn't feel the razor under my arm which kinda scared me so I gave up. She said they recommend having my hubby help trims these hairs with a scissors; then again after chemo starts this won't be an issue since all hairs on my body will disappear. Ah, the silver lining :)

The doctor also said I was looking pretty strong this week. I see them weekly but I told them that the biggest jump in my recovery happened this past week, from week 3 to week 4. I was able to bathe alone (huge) and dress at a faster speed. At the beginning of week 3 my son's music teacher affectionately said I walked like a 90 year old but then by the end of the 3rd week she said my color looked darker, I was moving about easily (she said this at the end of the week not the beginning :). I've been walking in the mornings with some girlfriends who've been so wonderful in picking me up in the dark hours of the morning and finishing the walk before my household wakes up.

Doctors' original thoughts prior to surgery was that I'd be able to run 3 months after the mastectomy -- in time for summer. Now they said it's looking like 6 weeks -- so in 2 weeks I can run again. Though I won't be running at a pace faster than a walk nor will I be swinging my arms, "Race walking" guidelines include disqualification of any walker whose two feet leave the ground simultaneously so that would be me. "Race-walker-whose-feet-leave-ground" means I will be crossing over into running. I'll take this. It's good enough for me.

Running thrills me for many reasons. Not only do my blood levels and lungs feel good  -- but I can poop so easily after a run! Such a simple task for many but for me, when heavily medicated, it's brutal. I get so stuffed up there that many people think I'm six months pregnant -- including my mom who kept asking and I kept assuring her that I was just miserably constipated.). AND if I'm running  -- which triggers pooping -- then ultimately this means that I'll also be able to get the left-over chemo toxins and tons of meds I'll be on out of my body which I'll be eager to do.

This past week is the first week that I've been off meds post-mastectomy and my whole pooping situation has been incredible. I could have still been on meds for at least this week to get through some pain, but in my case, I wanted to trade pains by sacrificing some chest pain for the ability to go. While on this short interval of testing pains and processes, I've also come up with some great recipes that have helped. The real test will be if these recipes work next Tuesday when I start some serious meds and chemo without quite running just yet. More on recipes to come.

Overall, my quick recovery means that all the juicing and paleo eating that I've been doing is paying off. Food can heal. Grateful. Very grateful.

Rooting For Breast Cancer Survivor, Dorothy Hamill, on Dancing With The Stars

Since Olympic Gold Medalist, Dorothy Hamill, had breast cancer with subsequent treatments of mastectomy, chemotherapy, radiation and hormones, I've been interested in watching her perform on Dancing With The Stars. This was week #1 of Dancing With The Stars and I just watched her  performance on the following link (you can tell she is just going to get stronger and stronger. She looks amazing as a 56 year old woman -- inspiring!):

Dance Performance plus Intro clip: http://www.thehollywoodgossip.com/videos/dorothy-hamill-dancing-with-the-stars-performance-week-1/

I also came across an article that talks about Dorothy Hamill's side-effects of breast cancer treatment. The link to the article is found here: http://www.medpagetoday.com/Blogs/CelebrityDiagnosis/22670

Like Dorothy Hamill, I was told that my cancer was not a death sentence. I still had a life and one that I should not stop living. The side-effects, however, will be a challenge. The ones mentioned in the above article are some that were mentioned to me by my doctors. In particular, cognitive function challenge (otherwise known as 'chemo-brain' or 'foggy brain') and fatigue are ones I was most concerned with given the fact that I had to take two academic and professional exams in the same semester of diagnosis and initial treatment of mastectomy. I had a choice of putting off the exams until the following semester -- but even without cancer it is normal to forget what one studied in terms of being 'test-ready'. I decided to pursue the exams this semester in between mastectomy and chemotherapy. For me it was beyond me -- it was a decision I needed to make and do for my family since I'm my son's primary clinician (a long story meant for another post or even blog). And, my doctors were completely supportive of this decision from a medical standpoint. I still had some small windows of opportunity and if the tests happen to fit into those windows then it was meant to be.


I'll be rooting for Dorothy Hamill this season -- and I'll be watching her with awe-stricken eyes for sure!

Teeth Cleaning For Chemo

Two weeks ago today I went to what my oncologist called "Chemo Class" (upcoming detailed post...) But for today's post I wanted to talk about one of the things they recommended in that class and is on my 'homework' checklist of things to do and to buy: teeth cleaning and dry mouth items.

One of the first things they mentioned about teeth hygiene is to get a teeth cleaning prior to the start of chemo. First, you don't want the bad bacteria that is present in the mouth (eg like plaque or tartar) because it can get into your bloodstream. And since the immune system will be majorly compromised by chemotherapy, you don't want this bacteria to become opportunistic and wreak Havoc on the already weakened system. Better to start the war as healthy as possible -- and teeth cleaning is part of the combat training.

Like post mastectomy, chemotherapy will also make my mouth get very dry and it will produce mouth sores. However, there are ways to lessen the effects -- and even possibly avoid (still hopeful!). One way is to keep hydrated and to keep the inner mouth area clean and lubricated. Using gentle tooth paste and mouth wash that is gentle (Biotene is the popular med brand that can be found in most pharmacies) will help.  I've read in several places that brushing after every snack or meal and using mouthwash at least 5 times a day will help -- so I'll be going through A LOT of mouthwash and tooth paste.

Many folks preparing for chemo are so busy learning the game, preparing for this battle with other appointments, and just doing life in general. So, going to an actual dentist is a battle in itself. Home-health practices are out there -- and I'm just so blessed that one of my close friends (and training teammates) is a home-health care professional who specializes in teeth hygiene. She texted me yesterday morning and said she wanted to come over and gift me with this visit. I eagerly accepted and it was such a wonderful experience. I got to stay in my own home, pull out my post-maternity comfy chair, and enjoy conversation. She was gentle, thorough, passionately skilled, compassionate (I highly recommend her!). My son even got to participate and help out as her assistant. AND she even brought several packs of Biotene to get me through this next phase of cancer -- chemo! Thank you, dearest friend! I'm forever grateful.

breastcancer.org info link on what to do before chemo:

http://www.breastcancer.org/treatment/chemotherapy/process/before

Give and Take: Expansion and Drains

The good news is that my surgeon removed my beloved drains -- so no more salt in the wounds experiences that happen at each daily stripping of the tubes. No more carrying around of small body fluid grenades. Freedom enjoyed after 3 weeks. This was truly exciting, for about 10 minutes.

At this same appointment the doctor wanted to begin the process of expanding my pectoralis muscle in order for the fluids to have a natural place to travel. By starting this part of the process of breast reconstruction at this stage I would then minimize infection and minimize having to go to the office and having a needle inserted into my chest to remove fluids.

Ironically in order to avoid having to have a needle to remove fluids I had to have a needle inserted to inject fluids.

It was surreal. It was the first time I felt like a baby in this process. Something about removing an ugly disease from my body made me stronger. I still cried throughout other procedures but those tears were more warrior-like tears of someone fighting and not wanting to give in. But yesterday was different. I wasn't staring at an enemy with warm cheeks and tears streaming down. I was staring at some unknown thing that was neither friend nor foe.

Reconstruction for me is such a strange process. I don't quite get it yet but hopefully soon I will. There was, though, one truly great moment. As I started to somewhat panic with the needle coming at me, the doctor said "now go to your happy place" and the ice breaker kicked in as I burst into laughter. I could not help but think of my 7 year old telling me this same thing just the other day when he was "helping daddy" with my drains. The tension was then replaced with this uncontrollable laughter.

So yesterday was day 1 of this second phase of reconstruction (phase 1 happened at the mastectomy when they simultaneously removed my breasts and then cut into my pectoralis to insert an empty balloon like thing for this second phase). This second phase will now continue every ten days. Every ten days I will have 50cc of saline solution injected into that balloon in my chest. Meds like Valium will help the muscle not spasm.

Yesterday was also my two week countdown to chemo which is the second stage of my cancer treatment process (stage one of treatment being mastectomy). Learning and growing all the time.

Thank you for positive thoughts and prayers my way!

Planning Haircut Series

One of the recommendations from my oncologist is to cut hair in a series. First, it would decrease shock. Second it is practical. Who needs clumps of hair on my pillow or floors on which I can trip.? Plus it's a way of staying in control of the upcoming effects of chemo.

My plan is to cut my hair short this week -- like a short bob. This will allow me to cut enough hair to donate. Then going into chemo weekend I'll do a shorter one inch cut. The week after chemo, which is Easter weekend, I'll buzz it all off.

When looking for short bobs I found a Meg Ryan old picture. I like this for the first cut. After looking at it for a while I had an aha moment -- I'll be getting my son's haircut! This has to be great ;)

Phase 1 Haircut Plans = I'll have my son's haircut

phase 2 haircuts = I'll have my husband's cut phase 3 haircut plans = I'll have my father-in-laws cut :)