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Build A Bear

These days getting ready to go out feels somewhat like a “build a bear” experience. Getting ready and dressed is one thing but when you get into putting things together to complete yourself, its a whole different ball of wax.

Most of the time before my diagnosis, getting ready for me meant throwing my hair in a pony tail, tinted moisturizer , gloss and go. The project has gotten more involved since the cancer. First is dealing with a prosthesis aka “Jane in the box”. I still haven’t gotten mine “fitted” yet, apparently fine lingerie boutiques perform this service. For now I have a fiber filled fake friend which seems very attractive to a toddler as a throw  toy and God forbid if I leave it lying around, my self esteem could be flying across the living room. Then, the head of course. En route to a hairless Chihuahua,  I have opted to wear a wig on my bald head and that is an enlightening experience as well( no not because I look like a light bulb). Its amazing how well these things are made. When my hair began to fall out about 2 weeks ago, I wore a wig to the salon where actually I was going in to get my head shaved. When after getting it shaved and having put the wig back on, I came out in the waiting room, I got a lot of compliments on my hair.It took a lot to keep a straight face and not giggle.Sometime though when I am feeling particularly impish, I will tell people who compliment my hair that its a wig and I am bald.

I still have some hair on the scalp and I am still conflicted about whether to shampoo my head or use a body wash on it? I have always been quite near sighted since childhood so contact lenses have been my old friends. I then wonder, if all of it is necessary? What if I step out with one boob dangling, a bald head and my thicker than the base of a beer bottle glasses? How does it really matter? Well, from a 6 yr old’s standpoint, I look like a “man” with my bald head so he is usually pleased when I dress up. But I debate, am I hiding something or do I just crave being ‘normal”?The other day I was cleaning underneath the couch and found a hair pin, which I absent mindlessly tried to put in my hair and then stopped. A part of me wants everyone to hear my struggle but  then a part of me wants to blend in and not stand out.One other assault in the looks department is the blackening and pigmentation of my nails. Apparently nail changes are common with chemotherapy and pretty soon, nail color would be another component of build a bear. I look at myself in the mirror  and there are times that I miss my old exterior self. But then in the same mirror, I hope to see all gray hair some day and many wrinkles of life experiences , and to able to see that some day, I will have deal with all of this today. I will keep putting the pieces together so someday I can feel whole again. Ending joke : ” How are chemotherapy and labor similar”?, “They are both painful and you end up with a bald person!”. Until next time….

Chemo Bipolar

Yes Katy , I am having a case of Chemo Bipolar, and I am hot and cold in my noggin’ sans hair. I have treated many with bipolar but now I am getting a visceral understanding of really what having the ups and downs means. Having no control over how you are going to feel for the next few days, actually  miserable is the forecast 3-4 days post chemo, waiting for the cloud to lift so you can have your share of the “manic” week before it starts all over again. It’s hard to believe that a week ago I chose to walk 2 miles just to get a cup of good coffee – only had decaf at home, what kind of life would that be! Today just a trip to the kitchen feels like a hike. That, my friends, is Chemo Bipolar.

I am passing the week in hope for the “bipolar switch” when the metallic taste in the mouth disappears, the “shutdown” in the alimentary cabinet is able to push out a solution, the aching in the muscles (reminding you of what you are going through) disappears, the nerves start to fire some energy beats and the corners of the mouth are able to host a smile. Such are ups and downs of life with chemo.

It’s good they give you a schedule. You start to plan your life in the “good week” – work, kids and activities. The good week is off week – off from hospital, off infusion pumps going “hee-haw, hee-haw” for 8 hours (I hear them as “you will, you will, survive”), off from smell of IV meds, off bandages, off hospital gowns, off being “the patient.” It’s life without caffeine….no buzz, no beat, just existing, waiting for the grand prize at the end, end of treatment. My mind wanders, “What will be my lithium for this bipolar – something to hold on to so I can bear it all?” Thinking like a true psychiatrist, huh?

For me, it is the “manic week” when I am able to bake cookies (OK, I admit not from scratch), go do my Target runs of mostly non-essential items, go see patients and encourage them out of their deepest depression, be silly with the kids so much that I forget it all and live in the moment and cook and taste real food. Life truly becomes a collection of moments rather days, and about having fun while you can.

Then the day before chemo comes, with anxiety and irritability, with apprehension, with hope that it will easier this time, knowing very well that fatigue is a cumulative side effect of chemotherapy, still some hope lingers, until the infusion is done and I puke my guts out – that signal from the pit of the stomach that says “This stuff would be so much better outside my body.” The day of chemo, two hours prior I “marinate” my port (IV access disc surgically placed in my left subclavian vein) with lots of lidocaine (numbing medicine), so the needle won’t hurt (not the worst pain every but totally avoidable with good marinating) and then place Saran Wrap on it. Really, Saran Wrap. Then I put on my smile and my make up, and we go.

I guess it’s all about dulling the pain as much as possible and taking the rest in stride. Especially in October. Happy Breast Cancer Awareness Month! Take care of those breast or you will miss them bad!

Shopping Center

After having had a mastectomy, I have often wondered if the center for shopping in women resides in the breasts. I will admit that I have less urges to shop and less interest in watching QVC. Women shop for all sort of reasons. I shop for what I need, for what I think I may need, and for what I think will no longer be available if I don’t buy it right now! I own Spanx at my ideal body weight just in case that changes. Retail therapy, they call it. Unfortunately, it does work. How can the smell of new leather boots with studs and fancy buckle not perk one up? No, I am not talking about breasts, no pun intended.

Having breast cancer opens up a whole new market for shopping. Head gear, wigs, bright lipsticks to off set the bald head, scarves to look more feminine without hair, new skin products since skin dries up with chemo, some pink breast cancer awareness stuff, charms for the Pandora bracelet, inspirational necklaces, and of course a new hand bag to carry the stuff around! Honestly, its a  lot of fun.

You can probably tell that I have somewhat of a shopping addiction. Okay, I do, since I have tried to give up shopping, but it hasn’t worked. Three months is the longest I have stayed “sober.” Building the “mastectomy nest”  was also a lot of fun with a cozy blanket, reading material (gotta have new books for recovery time), spray-on lotion (my legs get itchy), fuzzy socks, front open pajamas (can’t move your arm much post op), chocolate-covered coffee beans and pain meds. Oh yeah! Besides the pain of course, it was nice to laze around in a La-Z-Boy recliner and take naps!

I know that many people get all Zen and all after having cancer. But I can’t help it, I really love my stuff. I was so happy when my daughter was born, an heir to my hand bag collection. I know its great to live simply and to have less things, but when you know that you may have fewer days, you gotta have something to hold on to. I would much rather unstuff my life of emotional baggage, of dead-beat relationships, of toxic people. That to me, is much more valuable.

Cancer does help you sort through the maze of complex relationships and helps achieve clarity of who is worthy of your time. I feel more ready to decline invitations to parties I don’t want to go to, to say no more easily to time-draining, emotionally stressful adventures, and value my time more. Yes stuff is investment of money, but what I worry about now, is investment of time and the return it will bring me. It means selling all the dead emotional stocks and freeing myself. Yes, I need emotional chemotherapy too! It takes time but I am ready like never before. As I am writing this, I notice that a clump of my hair in my hand. Oh, the shedding has begun. Gotta log off, I forgot to buy the wig liner, and I have to dye the hair pink before it’s all gone.

What Doesn’t Kill You…

Somehow this song has been doing rounds in my head, persistent just like the low-grade nausea after chemo. They say, “What doesn’t kill you, makes you stronger.” So I think, by this time I should be able to wring the neck of an elephant with my bare hands (not that I have anything against my pachyderm friends), and probably a whole herd after 16 chemo sessions. Every needle poke, every breathing maneuver, every moment in the scanner, every noise of the breathing of medical equipment is apparently making me a stronger person.

So I accept it. Not that I have a choice anyways. I was told this clearly again last week when, due to my Adriamycin allergy, I had to see an immunologist for a consultation. She is hell-bent on giving me my  Adriamycin. “What choice do you have, you need your chemo!”, says she. So in Uzma vs Uzma, the cancer fighting part of me will be whipped into shape with antihistamines and a generous helping of steroids.

I did finish a 5K this weekend. No I didn’t win, they are not giving me the steroids of the right kind – nudge, nudge, wink, wink. As I was walking, I was wondering whether I would be able to finish and really what is the finish line for me? One thing I know for sure is that I have to cross the finish line before one rogue, mutated cancer cell does, that all of my healthy cells are pitted against a small group of very extremist cells. Cancer seems like a terrorist activity of sorts. A small group with a different philosophy on growth and expansion vs. others who are living ordinary cellular lives staying in their place, not venturing to nearby organs and convincing them to join “the cause.” And chemo does not negotiate with terrorists, and boy, is there collateral damage!

Speaking of collateral, I took my daughter in for a flu shot, and guess what!  She got a blue Popsicle at the end of the visit. Makes me wonder, what happens to the guilt of doctors and nurses with adult patients. So far, no one has offered me a Popsicle anywhere. Not even a sticker. Or a sucker. Oh I get it, because it’s making me stronger. Otherwise can you imagine? “Thank you Dr. Y, you are done with your infusion and here you go –  your gallon of ice-cream and what color Porsche would you like?” Then my thoughts got interrupted by what my daughter was listening to, “Down came the rain and washed the spider out, out came the sun and dried up all the rain, and the itsy-bitsy spider went up the spout again!” Got to get ready, second round of chemo in 7 days. So stay strong my friends, stay strong!

Funny Bone

It’s hard to be funny when you are in pain, even harder when the pain is in your bones, thus making it hard to connect to your funny bone since all the marrow of all the bones is chatting up a storm.

Yes, I have had my first round of chemo. I want to clarify though that I have an issue with the term chemotherapy. I would call this “getting cancer fighting medication treatment through IV” rather than “Chemo.” It just sounds horrific and toxic. I really think that the oncology community should consider re-naming Chemotherapy. Chemotherapy sounds depressing, something that is being done to you rather than you the patient, going in with will and optimism to get the recommended treatment. The term “chemo” provokes fear, fear of loss of control, fear of baldness, fear of being tired, fear of looking like a cancer patient.

Anyways, I did get my first “chemo” a few days ago, and always falling on the edge of statistical curves most of my life, I excel here too. I had an allergic reaction to a cancer drug called Adriamycin. For those that have never received chemo, there is an extensive foreplay of drugs that are administered to minimize the side effects of the chemo agents. I arrived at the oncology suite at 11:30 am and till 2:30 I was still being pre-medicated. Unfortunately, the grand finale of the red juicy juice infusion resulted in a swollen lip and itchy tongue.

I always have an itchy tongue, and most of the time it leads to  wrong words that come out at wrong times. But this time the tongue really itched, and the only words came out were, “My tongue is really itchy.” The staff promptly dealt with the reaction and now I am the “trouble maker” at the cancer center. The next day when I went for hydration, I was “The Girl with the Adria reaction” – a distinction that, I hear, is rare.

Then came the Neulasta shot, a medicine given to keep my white cells up and hopping, but it causes all the bone marrow to hop, and thus the pain. So here I am, having had the taste of chemo (literally too, its kinda metallic), thinking what it will be like the next time. All I know for sure is that I will still be me, and then rest will depend on how my body will choose to talk to the chemicals. I hope for my sake, they get along this time.

Hugs and Kids

I hug. Not a lot, but I do hug. Hugs are good, hugs are comforting. My internist has turned into a hugger ever since I got diagnosed. I get hugs all the time now. The “I feel sorry for you (with a little nod of the head ) hug”, the “You are going to be OK” hug, and  “I am happy this is not happening to me” hugs.  Hugs are different as a mono-boob. There is slight hesitation now.

My kids, however, have figured out that if they want a soft squishy hug they should approach mommy from the right. I think my son feels that loss of my breast when he hugs me.He feels mommy isn’t that soft and squishy (not that I ever loved his characterization of me being squishy after busting my ass in the gym) as before, but happy now that he has figured out a way around it. He told me one morning that he hopes I get my breast back, I told him it will grow back next summer. It’s good to be six and believe that breasts grow back.

Beyond that I don’t think my ordeal has affected him much. He asked his dad for the Friday Steak ‘n Shake runs during the time I was recuperating from surgery and feels satisfied that his demand was met. The 2 yr old only wonders why sometimes my chest doesn’t bounce back.

Having cancer gives some transient respite from maternal guilt. Its like “get out of jail free card” for a mom. You get used to being good enough and feel relieved that at least for now you don’t have to match up against the Pinterest moms with handmade hair barrettes and home made Halloween costumes. It feels OK if your kids’ lunches do not have all food group in them. It helps scare the hyper PTA moms away.

Cancer also helps zero in on what is really important for kids – spending time with them. It also allows you to get away from them to find your quiet space, your alone time. Time to think about your life and death. And then it makes you get up, no matter how tired and hug them some more. The “When I am not there, you will be OK” kind of hug.

So hug someone. Because when you really need a hug and get one, nothing works better than that, not even chemo!

Silicone Lining

Apparently many think getting the news of breast cancer is a moment to rejoice! Why? Because you get “New Perky Ones!” It has been said to me too often, my response (of course, not aloud) is how about I punch your face so hard that you get a “New Improved Silicone Face!” Idiots! I believe in seeing silver linings, I am even excited about skipping long hair color appointments at the salon after I go bald, freedom from waxing, threading and all other forms of torture popularly known to women as grooming. But really, after hearing someone has breast cancer, this the best you could come with?

It is very interesting how people view cancer as an entity, this big black entity that envelopes people. I see it as a disease, a chronic disease that you live with for the rest of your life (or die with). I was in the waiting room to get my stitches out and was chatting up an old lady who was there to follow up on her ear lobe procedure (the earring holes had gotten too big and she had them repaired). She told me, “Cancer loves sugar.” I don’t know why people talk about cancer as if its their pet, or acquaintance. I have never heard this “Blood pressure loves salt.”

You know who else loves sugar, me! and a lot of people I know. May be when fear is overwhelming, separating it from yourself as an outsider is comforting but cancers are your own cells acting rogue. Making it out to be a big black shadow that follows you gives it more power over you. Having cancer, one reality that must not be forgotten, is that you are in charge, even though you may feel helpless and out of control. So here is to fake silicone breasts and the perks they come with! Cheers!

Monoboob

So even though I made an attempt towards immediate reconstruction, it did not work out (never mind the whole week that I feel that I had a pouch of Capri Sun under my skin). So I needed a second surgery to take Capri Sun out completely (They use a thing called a tissue expander which is a saline filled plastic pouch that gets filled progressively with saline until desired size is achieved). Now I am walking around what I call a “monoboob.” I feel like a unicorn , rare and exotic. Wearing a bra now is no longer a house majority,  instead of two yeses there is one yes and one no. Any ways, whats fascinating is that they take your real thing and hand you this fabric fiber filled fake boob. The punch line, please pin it inside because sometimes, it pops out. Now that fake boob has a name. I call it “Jane in the box”.

5 seconds

The diagnosis of cancer, no matter who you are is scary. However, if for change you are not, some well wisher will make sure you are. “Oh yeah now it’s life time of worry,” and “Exactly what kind of worry are you referring to?” I think. Obviously death. But death is inevitable for everyone, not just cancer patients. It’s true that cancer patients have a heightened sense of shortened longevity, but it is also a helpful catalyst for change. To fix your life, to clean out the clutter, to unload negative forces in your life. Things that people should do anyways but don’t.

Cancer makes you think. Think a lot. The words spins in your head 24 /7. I love the 5 seconds in the morning when I wake up, when my brain in still asleep, and I feel, oh it’s a new morning, then the word cancer creeps in my head. For now I will keep enjoying the 5 seconds in the morning when I haven’t still woken up to the toughest reality of my life. Good morning, it’s another wonderful day!