My Wounded Soul

I don't know where to begin. I know that is probably hard for many of you to believe that read my words. They usually spill freely with my fingers barely able to keep up with the flow from my grey matter. So much so, that I believe some is often lost between my brain and hand slipping out because of the "traffic jam" created when my brain churns uncontrollably. After this past week, I think I should start near the end of things and work my way around. As conflicted as my emotions have been it seems fitting that this entry is not chronological in nature so as to really demonstrate how I am feeling right now.

I have been in Houston all week for follow-up. PET Scan and lab work and physician visits. The low "scanxiety" from the previous testing period is totally replaced by an unfamiliar anxiousness for which I really don't have a word for right now. It may come to me as I struggle to get this tsunami of emotion out in words. Somehow I know that if I can get it written down it will become manageable and perhaps understandable. The build up to this scan had been pretty uneventful until about two weeks ago. Events around me were beginning to form a cloud of doubt in my head pertaining to my well being. I don't mean my "no evidence of disease" status. I am talking more my happiness balance. Most people believe that one has to do with the other, but for me in all my stage 4 cancer glory, that is just not so. I keep them separate and operating from each other. That way I can be happy everyday no matter what state of activity my cancer is in. Now this cloud was starting to form and try as I might, maintaining the status quo was becoming a very conscious effort. It started with the loss of a friend far away from me that I had met as a result of our kindred cancer. Hers had advanced, quite rapidly I might add, and all the treatments and care provider her was not effective and she passed away. Although I had been expecting it, it was hard. What separates her from me? Nothing. I think a small haze had started to form at that point but I ignored it. Maybe it was my petrification from the week before at the deterioration of another sister struggling with this awful cancer that forced me into this kind of numbness.

A few days later I was attacked by a stomach flu of such a violent nature that words truly cannot describe it. Let's just say I could have had a colonoscopy with no prep required after this bout! I was on the 2nd day of recovery having just laid down to go to bed when my cell phone rang. I saw the caller ID was my mother's cell and I instantly registered "trouble". She never calls this late and never on her cell. I heard tears in her voice and instantly said "Mom? What's wrong?" She went on to explain to me that my beloved and favorite Aunt had passed away suddenly that night. "What?!" was all I could choke through my tears and after a short recount of the events of the evening and a short term plan for the next few days my mom had others to call. She did assure me that Aunt Mary wouldn't want me to miss my appointments in Houston. The cloud was descending now. I couldn't think. I went to tell my husband and I just could not think.

As all of the above was happening another dear friend with devastating advanced anal cancer, this one not so far away, was admitted to hospice for comfort care. I have no words for this...I have no words. One of her best friends kept me posted daily. We "Facetimed" so I could say goodbye to her. I couldn't go see her because Houston was waiting with my appointments and scans and evaluation. She wasn't really aware of me. That call was for me, not her. I told her I loved her and I was proud of how she never gave up and fought until the end. I knew in my heart that Deb would want me to go and take care of myself and not let this beast get the upper hand on me yet. It felt so wrong!

All of these things felt so wrong and yet I was packing my bag and heading away from all that sorrow. Moving toward what? I didn't know but I knew I had to move that way. Numbly I packed for the trip. Strangely, we had some "fun" things planned for this visit south as for once my husband was off work. There was the Houston Live Stock Show, the Blake Shelton Concert, the SCOPE 5K colorectal(anal) run at MDA and a chance to meet some survivors of anal cancer via The Anal Cancer Foundation. So I pack accordingly and notice what I am putting in my suitcase is in total contrast to how I am feeling. What the hell is happening? What am I doing?! Why are the planets aligning like this? Am I being tested to practice what I preach? Can things get any worse? That question scared me. 

I remain stoic on the drive to Houston. My husband remains wisely quiet and gently walks around my edges as we make the long trip in. We are staying with Aunt Rita and arrive early enough for dinner and then to fall into bed because the next morning is testing day and we have to be on the road by 6:30 am in order to make it on time for all the things ordered for my follow up. In the morning, we know the drill. Up and out of the house, me NPO. I hear from Deb's bestie on the drive in and she, having had to return to her own home was updating me that Deb was comfortable but unaware. We comment on her strong heart. She promises me to keep me posted regularly. As I await for my PET Scan to be done in a dark little cubby I nap fitfully with dreams of all the sorrow around me. I follow the tech to my scan room like a zombie. She is kind to me but I let it roll off and just get on the table and put my arms up over my head knowing I had to be here but wanting to be other places. "This cancer is in my lungs now." is all I can think. That's how it rolls. Treatment for this is really not defined. Everybody gets something different. I received what's considered "conventional". Does that mean they don't think it will work or do they want me to "hurry up and fail something" so they can move on to other unclearly defined treatments that really may hope to help me? I close my eyes and try not to think as the pictures are taken. I don't waste time trying to read the techs eyes for any answers that I know won't be there. I finish in 20 short minutes, collect my things and go to find my husband. We head out to feed me and then decide to go to the Apple Store and purchase a new computer as our home computer had finally crashed permanently. We then return to Aunt Rita's to begin to count the minutes until we meet with the doctors and learn the results of all the testing that has just been completed. I absently check my MD Anderson patient portal every hour for answers that never come. I know I will have to wait until 1:00 on Thursday. We attend church services with Aunt Rita and I try to rely on the grace in which I know I am held. I collapse there and grieve for my aunt and my friend that passed and my sweet friend who lay in the gentle care of hospice. I wonder about life and death and peace. I just puzzle until time for sleep...which doesn't come despite sleeping pills and benedryl. 

"Your phone is ringing." murmurs my husband as the early shades of morning leak around the edges of the curtains in our room. I fumble for my cell and see the number of Deb's best friend and I know before I say hello what this call will reveal. Tears silently slip from my eyes as Barb's voice reassures me that her passing was peaceful and comfortable that early morning and she was surrounded by her family. I thank her for being a good and loving friend to her and to me. I hang up and stare at the ceiling. My husband grips my hand beneath the blankets and says "I'm sorry" and we both feel how hollow those words are. I wonder how my husband feels in this moment. Wanting to comfort me, perhaps fearing that what just happened to another man's wife is my fate as well and therefore his. As he grips my hand beneath the blankets can he envision holding my hand in different circumstances...as I slip from this life. He gets up and goes to get coffee. I lie there numb engulfed in a fog. I don't know how to feel. I am afraid of feeling anything as if I let it go it will rage like no storm I have ever been through. I rise and shower. I eat a pop tart and make small talk with my husband. We decide to head in to MDA a little early to have lunch in their extensive cafeteria. It's an easy drive this time of day and we know the drill...parking garage 10. We end up on level 8 and I say "Eight is great" a little rhyme to help me remember where we parked. I have my blue notebook and my husbands hand as we cross the skybridge on level 3. 

After our lunch we head over to the Radiation Oncology Department which is on level one in what I call the bowels of the hospital. Reinforced to keep the radiation that they are blasting patients with contained to doing just that. I check in knowing that 1:00 is the first appointment and they will load about four of us patients in rooms for the doctors to see. My moment of truth is approaching and I feel ambivalent, for lack of a better term. I want good news but emotionally I don't want to be happy...I have no right. Sorrow has surround me these last two weeks and continued to build and compound even on this very day. My name is called. I am weighed, vitals taken, questions asked. The nurse is nice. I am nervous. My husband is fidgety. He writes in the notebook. The nurse leaves and we wait. A few minutes later the doctor is in. He asks how I am feeling. "What does her scan show?" my husband blurts from behind me. He is not waiting another minute to know the truth. "No cancer activity" he says. I feel a smile on my face and reach back to grip my husbands hand. I see a break in the fog around me. It's not very big...like that first little ray of sunshine that cuts a deep oppressive fog. But I see it and I allow myself to be drawn to it and let it warm and begin to heal my wounded soul.  

5 people like this post.
Helen Marshall, June threw a punch at your cancer.
3 people sent you a prayer.
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Michele, all you can do is live each day. No other choice. Accept love, and give it.

HUGS.
Michele likes this comment
I have felt that certain amount of guilt, for lack of a better word, in feeling happiness, joy and peace when I get good results, knowing that someone else is getting bad news or is in their final days. It's very difficult to deal with those feelings sometimes. However, I truly believe that each and every one of us, no matter our status or our fate, wants good news for everyone else. Your friends would want that for you and I'm sure they would be happy to see that smile on your face when your doctor told you your results. We give to those we care for as long as God allows--that's all we can do and that is exactly what you have done. God bless you, dear friend!
Michele, Betsy like this comment
My heart hurts for you. But at the same time is rejoicing for for good report. Love you guys...Mike
Michele, Patrice58 like this comment
Your writing skills are perfect.
Michele likes this comment
Michelle, sometimes there's no understanding why things happen the way they do and there's absolutely nothing you can do about it. All you can do is roll with the punches and go with the flow. And to hold on to your loved ones as hard and as long as you can.
Michele likes this comment
I have no words, I have no words. You are amazing and I am so sorry for the loss of your Aunt and friends in this battle. I am SO happy about your test results. I hope they bring you comfort in this difficult time. God bless.
3 people like this comment
I am so sorry about the loss of your aunt and your friend, Michele, but so glad that you've gotten a NED report.

Hugs,
Mari
Michele likes this comment
You are a fantastic writer. I am so glad to read the happy ending to this chapter. I have my 6 month check up next week and am starting to become anxious. You are among friends who totally get it.
Michele likes this comment
smiles ..oh Michele I am so happy... thats wonderful news... its all crazy the emotions we have to weave in and out of, but it is our unique tapestry of our life.. and when all is said and done, life is a gift every day shaped by many variables that we must process and make sense of and truly with faith in mind body and soul be grateful for... my heart is filled with thankfulness on your "no cancer activity" ... When you win we all win... love and hugs and prayers always ....Sabina
June, Michele like this comment
What a dark dark place you have been in and what emotions to go through. My heart goes out to you in all this turmoil. So pleased to hear your scan results and the that there is a little light coming through Hugs Annabelle
Michele likes this comment
i cried at the end, glad that awful story had a happy ending :) sorry for your losses.
Michele likes this comment
Be happy Michele. Everyday is a gift for each of us. I have learned two important things"Live as if you were to die tomorrow. Learn as if you were to live forever.” ― Mahatma Gandhi and “Life should not be a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside in a cloud of smoke, thoroughly used up, totally worn out, and loudly proclaiming "Wow! What a Ride!” Hunter S. Thompson. So happy for you good news Michelle!
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Vital Info

Posts

October 3, 2011

Click Here

January 31, 1963

Cancer Info

Anal Cancer

Squamous Cell Carcinoma of the anus

February 5, 2010

Stage 4

2.1 - 3.0 cm

Grade 3

No

As much as possible

Proceeds from my published blog donated monthly

It is a thief

You have to live every day of your life and stay positive :)

Donate $$ to the anal cancer foundation. Raising awareness saves lives!

Is there anything good about poison?

Bone, lung recurrence 9/20/2012

Cancer Center of Kansas, MD Anderson

Bland diet, sitz baths, take your drugs...nobody gets extra credit for suffering.

Talk, talk, talk to somebody. I chose to write.

April 20, 2010

September 20, 2010

Rectal bleeding, itching, sciatic pain. (thought my hemorhoid was acting up)

My blog has been published and proceeds go to The HPV and Anal Cancer Foundation. http://tinyurl.com/72bjjfp

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