I am a bird with a broken wing

“There is nothing like returning to a place that remains unchanged to find the ways in which you yourself have altered.” -Nelson Mandela

Last Friday, I returned to San Diego again after 13 months.  I was thrilled to be back… to see the ocean, to see the palm trees, to enjoy the sun, and to see my dear friends and colleagues.  San Diego pretty much remains the same.  Sure there are new stores and restaurants that come with the ongoing changes that any city undergoes.  I have been discovering the ways I have changed the past 13 months.  The past 13 months have not been a walk in the park for me in different areas in life: personal, professional, academic, relationships/ friendships, and health. 

For as long as I lived in San Diego, I never liked to go to the beach.  It’s too messy.  Sand in shoes, on the feet, in the towels and clothing.  But I came to San Diego knowing that I cannot swim.  The wound re-opened on Wednesday and began to drain again which is a good thing.  I want all the pus pockets to go away.  Open wound= no swimming.  Living in San Diego meant I could live my love for swimming (in pools, to be specific) year-round.  It was natural that I would look forward to going back to swim in salt-water pools in San Diego.  Nope.  I ached for some kind of water activity.  Yesterday, a friend and I continued our Sunday morning tradition of walking for 1-2 hours.  Since the San Diego Pride was happening at our favorite walking venue, Balboa Park, we opted to go to Del Mar and walked along the coast.  I decided to go on the beach… and took off my shoes.   We allowed the ocean to come up to our feet and ankles.  It was heavenly.  Chocolate did not think so.  It’s ironic though… he lived in Hawai’i for the first five years of his life.  I found myself cleaning up the mess afterwards.  And quite frankly, I did not mind at all.  I loved getting the pleasure of soaking my feet in the Pacific Ocean. 

Since leaving San Diego three years ago, I have been coming back to San Diego for work at least twice a year until this recent hiatus.  I always packed my schedule with activities to enjoy San Diego, see friends, and work.  Since the infection continues to haunt me, I found myself slowing down.  I kept my schedule a bit open to allow myself to rest as needed.  It meant slowing down.  Allowing myself more time to sleep.  I did not allow myself to have much time to rest in Minnesota, which made the infection worse.  I was determined to make sure I rested in San Diego.  It’s so strange because there’s so much I want to do and see here, but I can’t.  The bed has become my best friend.  Saturday night, I slept 10.5 hours.  Other nights, I’ve averaged at least 8 hours.  As someone said to me, “”Your body only heals when you are sleeping.”  I was not feeling well on Saturday evening- I ached to go out with a friend and see the coast.  Nope.  Another friend brought me soup and then I slept.

It’s so unlike me.  A friend beautifully described it yesterday…  I am like a bird with a broken wing.  I WANT to fly.  I want to fly freely.  I want to play.  I want to soar and do so much.  Another friend said it’s not my personality to be laidback.  I am a Type A personality.  Before cancer, I could accomplish so much in one day that it’s amazing.  I have slowed down significantly.  Will I return to myself?  I don’t know.  Will that be my new normal?  I don’t know.  My friend on Saturday said after I told her that my surgeon said it would take at least six months before I feel like myself again.  She said, “Add some months to that because of that infection.”  It was like she slapped me with harsh reality but it was also truth that she lovingly told me.  She was gently reminding me to be patient with myself as I continue to heal. 

Sometime I feel like the world expects me to do so much.  They expect me to do this, that.  A friend said to me a while ago that her friend had similar cancer and she had a ‘procedure’ and is just fine now.  “I guess she’s just really optimistic.”  I later learned that it was not a hysterectomy but endometrial ablation.  It was an ouch for me.  I have received some similar comments from others who feel that I may be depressed which is hindering my recovery.  Despite what has happened so far, I think I am pretty optimistic.  I am still living.  I am still waking up in the morning to get to work.  I still find passion in cooking.   I still love walking.  I appreciate the little pleasures in life.  I get high on doing academic writing and research.  It’s my BODY that does not seem to cooperate.  Believe me, I WANT to do more but it’s like I am sitting outside my body watching, “Sheesh that body is so SLOW.  Get better!”  Then I realize I have to fully own that body and live inside that body… and roll with it.  My body will tell me when I can do so much.  I made my own peace with the fact that it is going to take some time before I can do much more.  I hope those in my world will be patient with me as I find my way back to myself.  Hearing things about how I may be pessimistic, depressed, or simply avoiding to do things are like knives to my heart.  Just be my cheerleader and say, “You’re doing great!”  That’s what I need. 

My name is Naomi and I am addicted to health insurance…

Yesterday afternoon, I got an email from Gallaudet University saying that my insurance plan expires tonight.  And that students would be renewed to a different type of plan or there’s always Obamacare.  Those were not their exact words but that was the gist.  I knew that the annual renewal occurs July 15^th so I was not worried until yesterday.  It is one thing to renew the same plan and another thing for them to dump the existing plan and go with a completely different plan.  Advance notification should have taken place.  I am figuring out how and who I can file a complaint for just one business day’s notice.  I am currently undergoing treatment for my post-surgical infection.  Of course, learning that my current plan is expiring was adding unnecessary stress on my plate.  I did not want to go a day without insurance.  Someone commented today that I was very dependent on health insurance.  Truth.  Yet, that truth hurts. 

If I did not have health insurance, I would have not gone to doctors that led to my discovery that I had cancer.  It made me wonder how many people out there are uninsured.  Despite Obamacare requiring people to have insurance or they would be penalized through their tax filing, there are people who are going uninsured because they cannot afford the monthly premium even with assistance or tax credits. 

I wondered today, how many of those people have cancer cells creeping in their bodies without them realizing anything?   Early detection is not possible for those people.  It makes me very, very sad.  I was insured.  Early detection was possible for me.  Early treatment options were possible for me.  Somehow, this makes me feel guilty. 

Luckily after scrambling around to figure out options, I was able to get an individual plan today, thanks to Obamacare.  The catch… the new plan doesn’t start until August 1^st.  Yep I am uninsured July 15-31.  A lapse that lasts for 2.5 weeks may seem trivial but… it makes me nervous especially with the infection. 

I asked to see my doctor today at the last minute to make sure I am on the right path to recovery.  We both agree that I am improving… the infection is still there.  She predicts that I won’t need any more draining.  We had to develop an action plan of care for the next 2.5 weeks.  She promised to take care of me via email.  I will be emailing her with updates of my recovery progress.  She ordered me more antibiotics.  She told me to finish my antibiotics tomorrow then it was time for my kidneys to take a break.  Since those antibiotics worked well, she wanted me to have enough on hand paid for by my insurance for the next 2.5 weeks.  What is even more concerning about the next 2.5 weeks is that I am going on a business trip to San Diego on Friday.  The last business trip I went on worsened my infection.  We discussed strategies for me to follow on this trip to ensure that the infection continues to go away.  And she will email me the green light to get back on my antibiotics if needed.  The wound has closed but is very susceptible to more bacteria as the abscess underneath has not fully disappeared yet.  Thus… no swimming.  I groaned… I told her San Diego was THE place to swim.  She could see that I ached to have some fun.  We both agreed that I had to shower before and immediately after I swim.  A watchful eye is the best we can do at this point.

I left the doctor’s office saddened that I cannot live without health insurance anymore.  My cancer is in remission but I need to be sure I retain the remission status.  One way to do that is to stay insured for routine monitoring and quick treatment options.  Somehow, I don’t think that system is fair.  I am blessed (and relieved) but many people are not. 

Raising Awareness about Cancer at All Ages

My infection continues to haunt me but I believe I am over the major hurdle.  I am waiting to see how the next few days play out.  I am so sick of taking those antibiotics.  I am deeply hopeful that this is over.  But that's not the topic of this post.

Last week, we sent Mike's youngest to the Annapolis Wellness House for a camp for kids between ages 6 and 12.  He had just turned six last month.  We have been trying to help him understand what cancer is.  As a child of Deaf adults, he invents signs that make conceptually sense to him.  He started signing cancer by initializing the letter C and moving it across the abdomen.  I showed him the surgical incisions on my stomach.  That's how he made the connection.  I tried to explain that cancer is not only localized in the abdomen but it can be found anywhere in the body.  I explained that his father, also a cancer survivor, had lymphatic cancer in his right armpit.  He continued to sign C across the abdomen.  I spoke with the social worker who coordinates the camp.  She said that it's very common for kids at his age to have rudimentary comprehension of cancer and that the camp would educate the kids.

The camp is for kids who have family members with cancer or have cancer themselves.  After the first day, he said he understood that cancer makes people really sick and that some people do die from it.  He met kids whose parents died of cancer.  He met a kid who had cancer since the age of 3. He met a kid who does not have much time left.  We could see in his eyes that he was impacted by the experience.  We were happy to see he had this educational opportunity.  The experience was so positive and profound for him that he asked if he could come back next year.  He remarked that he may not see the kid with cancer again next year.  Today, he was telling me that he felt he had more friends here than in Texas because the kids he met at camp were 'real friends' not 'fake friends'.  I asked him to explain more but he did not.  It is possible that he had meaningful connections with the kids at camp rather than just playing like many kids do.

I think it is great that he is getting the exposure.  It made me think of my own exposure to cancer I knew of cancer.  I have heard of cancer.  I have seen some friends battle cancer.  One dear friend died.  It was like I was one of the untouchables so it did not really affect me.  Now that I have had cancer, I am meeting more people who are currently battling cancer or have survived.  It can happen to anyone, really.  Awareness is key.  The more we know, the better prepared we are to fight cancer head-on.

Er... um.... ER!

Yep... the infection got worse over the weekend.  I went back to the doctor because I was having pains all over.  The pain spread into the sides of my abdomen.  This new pain hit at lunchtime on Monday.  I couldn't bear it.  I sat down to recollect myself.  Mike's boys were concerned.  The youngest, Robert, asked where my 'green pills' were.  They were actually blue pills that appear green through the brown pill bottle.  Robert asked about those pills the other day and I told him I was not feeling well and those pills are supposed to make me feel better.  I was going to take my 'green pill' after lunch that day.  The antibiotics were not strong enough to make the infection go away.  I called my doctor to ask what I should do.  She asked me to come in to be evaluated.  I went in... she said that the infection has gotten worse.  Thus, we had to drain those pus pockets she discovered on Monday.  She started to drain a small pus pocket but the procedure was extremely painful.  First, injections with local anesthesia (yes down there) then cut open then drain.  She felt that the pain was too much for me and she told me to go to the ER to get pain medication and stronger anesthesia.  Agh.

At the ER, they wanted to do CT scan with contrast.  I was like ugh.  Mike was unhappy that I have had a lot of CT scans.  While Mike ran home to collect his youngest from the neighbor's home and feed the boys dinner, I decided to research online about CT scans.  I learn that doctors are too quick to order CT scans.  I do feel that way with Dr. Jewell.  As much as I love her, she always orders a CT scan if I have this pain or issue.  Can we diagnose the pain without the CT scan?  I wonder.  I decided to refuse the CT scan.  I got injected with morphine that sent me to a happy, happy land.  After getting the doctor evaluation, they decided that the large pus pocket had to be drained.  The morphine definitely helped me get through the draining.  Having Mike there holding my hand helped so much.  I am surprised I didn't break his fingers.  They still had to inject local anesthesia several times and then cut a 1.5 cm incision and drained whatever they could get out.  The wound remains open today to allow for maximum drainage, although upon Mike's examination it is closing fast.  I was sent home with pain medication and told to continue the antibiotics, rest as much as possible, not to swim for two weeks, and not to drive for a week or until I'm done with the pain medication.

My internal medicine doctor asked to see me on Wednesday afternoon for a follow-up.  Mike was out of town for a job.  A friend drove me to the doctor's office.  She examined the area and we both agreed that the ER did not finish draining out one large pocket.  She also found a new small pus pocket.  She hopes that the antibiotics will help kill all the infection.  We'll see.

I really do not want any more infections.  I want to heal.  I want my life back.  I want to be active again.  I don't like dampening the boys' excitement when I tell them I cannot ride a bike with them or can't go swimming with them.  It sucks.  Mike and I were thinking of family activities and we find that there's not much I can do until this infection passes.  Onward.  That's all I can do.  Just move forward and hope for the best.