Monday, April 29, 2013

24 Hours

At this time tomorrow (11:00a.m.) I will be checking into the cancer center for my first chemo treatment. As much as I don't want to go through this experience, I also want to get it started. As Mary Poppins says, "Well begun is half done." 

I have received a revised schedule that was not great news. Fortunately I had warnings from friends who have battled cancer that these changes are par for the course so I was prepared to hear this news. Instead of 4 treatments, I will be receiving 6 rounds of 2 treatments each round. Feels like a lot. If I'm understanding the nurse's explanation correctly, that translates into chemo every other week for the next 6 months. The opposite weeks of treatments will be lab work and screenings/tests. The drugs I am using pose risks to my cardio and pulmonary health in addition to depleting my immune system so the doctor wants to monitor all of me closely. The doctor has not scheduled radiation, I was glad to hear that. She had told me I would be receiving radiation however. I believe she was preparing me based on the large size of the nodules throughout my neck, armpits and chest but if my body responds well to the chemotherapy that additional treatment may become unnecessary. One day at a time.

It turns out Reese Witherspoon works at my cancer center. Just kidding. My education nurse did remind me a lot of a cute, blonde, perky, southern belle she might play in a movie though. She was very sweet and took a lot of time to explain all the details of my treatment plan to me. I especially liked the part at the end when she held a pen and paper in front of me to sign. (As you read these words, picture a perky Reese with that syrupy southern drawl) "This just states that I have reviewed the likely side effects of your chemotherapy drugs, that you agree to treatment and understand all the risks involved," chin drop, soft eyes and meek voice, she continues, "including that you could experience death." What can I do but laugh. My dear lawyer friend reminded me yesterday that clause is written on everything I sign that releases me to do anything - enter an amusement park, ride a horse etc. Really, I'm not afraid of dying, actually did find the comment humorous.

I came across this verse yesterday and more than any so far it connected to something within me. 

1 Peter 5:10 And after you have suffered a little while, the God of all grace [Who imparts all blessing and favor], Who has called you to his [own] eternal glory in Christ Jesus, will Himself complete and make you what you ought to be, establish and ground you securely, and strengthen, and settle you.

 The truth that God has called me is of course elementary and profound all in one fell swoop. He is God, it is elementary that He would call me because it is His very being to love and include and desire my nearness. That the God of all creation would call me at all, much less His own, call me to His Glory is completely unfathomable, He Is God - what am I but a mere creation in utter dependence of His utter independence. To possess the peace of His love and the obedience of His Will is a perhaps seemingly contradictory but actually completely compatible duo of perfection in Christ. 

Being called to Glory demands an answer. An answer of obedience that is often provoked in suffering, of dying to self that He may do the completing and making me of what I ought to be, establishing  and grounding me. And then, settling me. I love that thought of being settled. My mac dictionary likes the legal definitions of settling a matter but that is not what my heart hears in this verse - though there is plenty of truth to be found there as well. When I look to Webster's 1828 Dictionary, I find this definition: "To place in a permanent condition after wandering or fluctuation." That sounds so sweet to me - no suffering, strife, separation, question, lacking, conflict, incompleteness, no unsettled matters between created and Creator. Miss Witherspoon like nurse can throw out those syrupy words and get my signature on anything she wants if it will settle me after a little while. 

The next verse in 1 Peter is my favorite though. 

11 To Him be the dominion (power, authority, rule) forever and ever. Amen (so be it).

This is what I am finally really getting. It's not about me! I can't say that strongly enough. He Is the Dominion, the Power, the Authority, the Rule, Forever. Frontward, backward, sideways, up, down and every which way. Who am I but the created. The beautiful mystery of Jesus is in getting that it's not about me. It's not about me, it's all about Him. The mystery is that in letting go, really dying to that thing I hold very most precious - me - I lose nothing and gain everything. 

I continue to feel vulnerable, in cancer, in sharing my heart but to be engaged in this most real experience feels incomplete if something doesn't come from it besides me getting better from cancer. In learning to be loved, in illness I hope I am also learning to really love. 

Friday, April 26, 2013

Resting, ready.

The afternoon my gp instructed his assistant to schedule me with the oncologist "ASAP" I was asked to stop by the cancer center on my way home to pick up a packet to to prepare me for my first appointment a few days later. "Sure," I said, and thought, "no problem, I'll just swing by on my way home." I pulled into the cancer center parking lot, shut off the car and to my surprise instantly panicked. David said he would run in without me but I declined. I had to go in, just did not want to. This response was nothing but pure selfish. I did not want to walk through those doors and look at the sick people, at what I was about to become. 
I did find sick people in the chairs of the waiting room. I did not see myself joining them however. It was not the pallid skin, scarfed heads or slow walks that was striking to me as I had feared. It was the death of soul emanating  that broke my heart. As I looked around the waiting room, hearing the cheery receptionist talk to David in the background, my thoughts were not of my illness but of grief for so many individuals who seemed to be in this situation where their bodies were finally catching up with the dying their souls had been engaged in for a long time already. 
Fast forward through a few nights with some tears, hopes, fears, assurances, realizations and awake dark hours and you next find me woken one morning by the Lord. Early morning summons are always my favorite. This one was particularly precious. 
I have been swimming in wisdom for decades. If God were an ocean, I stepped in and never stopped aiming out to the deep. The beach has been long gone, I've enjoyed those waters past the horizons end that are so beautiful from the shore to lose your heart in on a morning walk on a vacation beach stroll. Those words poets find that describe that sensation I won't summon, but it's that place, few do not understand, the beauty of the far and wide of that horizon. Iv'e been swimming there with Jesus for as long as I can remember. I've read the Bible umpteen times, read countless books of inspiration and wisdom, structured my life around His Word, raised my children in his truth, lived a life for Jesus, Iv'e loved Him, praised Him, enjoyed Him. Iv'e been swimming in wisdom but have known that while I had (nor wanted) no life jacket or boat on the way there was this aspect of truth that I was enjoying swimming in an endless ocean but somehow not really, truly getting wet.
That morning,when the Lord woke me was the morning I have been longing for. If I may continue the metaphor briefly, it was as though I just stopped swimming, floating, being about in the water. Gently, preciously, beautifully, I drowned in His depths. It's as though I finally understand that thing that has been in my mind, on my heart, known as truth to my soul but just not quite exactly grasped. I died to myself. There are no few words sufficient to describe this change I know. They are all the words of eternity, released in life. Released in Him. 
I do not want cancer. I do not want this port in my chest. I do not want to lose my hair. I do not want to be sick and tired all the time. I do not want chemicals dumped in my veins that will eat my flesh if they touch my skin. I do not want to suffer. I do not want any of the things from the list of miserable side effects the nurse so carefully listed out for me today. I do not want to die. I will however, forever thank God for this cancer experience that saved me. Saved me from the beautiful but just shy of completely lost in Him that it has given me. This cancer that released a love within that transcends all the words and ways that have been "me." I don't know how this will look to others. I think it will look like the fruits of the Spirit without the effort, I hope. I think it will look like compassion and knowing. I think it will look like Jesus. Honestly, I don't care what I look like. Finally, I really know so deeply, eternally, Jesus and Him alive and Him Eternal. I can sit in that waiting room, in a body doing whatever it is going to do while fighting cancer and do so not with the tragic death of soul I saw on that day in the waiting room but rather resurrected in life eternal. 
I love I Am, I love being forever lost in His forever. Resting, ready. 

Hebrew 4:9-16

So then, there is still awaiting a full and complete Sabbath-rest reserved for the [true] people of God; For he who has once entered [God’s] rest also has ceased from [the weariness and pain] of human labors, just as God rested from those labors peculiarly His own. Let us therefore be zealous and exert ourselves and strive diligently to enter that rest [of God, to know and experience it for ourselves], that no one may fall or perish by the same kind of unbelief and disobedience [into which those in the wilderness fell]. For the Word that God speaks is alive and full of power [making it active, operative, energizing, and effective]; it is sharper than any two-edged sword, penetrating to the dividing line of the breath of life (soul) and [the immortal] spirit, and of joints and marrow [of the deepest parts of our nature], exposing and sifting and analyzing and judging the very thoughts and purposes of the heart  And not a creature exists that is concealed from His sight, but all things are open and exposed, naked and defenseless to the eyes of Him with Whom we have to do. Inasmuch then as we have a great High Priest Who has [already] ascended and passed through the heavens, Jesus the Son of God, let us hold fast our confession [of faith in Him]. For we do not have a High Priest Who is unable to understand and sympathize and have a shared feeling with our weaknesses and infirmities and liability to the assaults of temptation, but One Who has been tempted in every respect as we are, yet without sinning. Let us then fearlessly and confidently and boldly draw near to the throne of grace (the throne of God’s unmerited favor to us sinners), that we may receive mercy [for our failures] and find grace to help in good time for every need [appropriate help and well-timed help, coming just when we need it]. (AMP)

Thursday, April 18, 2013

Shop Talk

I have so many things bubbling inside I would love to share in regard to things I am learning about encouragement, love and peace. This week is so much about technicalities that those words just aren't boiling to the top right now. I will wait for those to boil over to share them or it will be forced and maybe not the honest heart of what I would want to communicate. Those things are all going into my journal for meditation later.

This week and next are so filled up with appointments. I will have 10 cancer center appointments in two weeks + 1 day, the last one being my first chemo treatment. That's not including the fact that this is the week I had scheduled all the kids optometrist and dentist appointments. Lots of running. Once I'm through all these tests and classes the cancer center said things should slow down to an almost once a week routine. 

I have my treatment plan in terms of which chemo drugs the oncologist will be using, (ABVD - Adriamycin, Bleomycin, Vinblastine and Dacarbazine). She has prescribed a minimum of 4 rounds, waiting on test results to determine a final number. I do not have a clear understanding of when the radiation takes place, but should know answers soon.

The two things on my mind right now are the bone marrow biopsy I enjoyed Tuesday and the haircut I am getting tomorrow. 

Bone marrow biopsy is now officially on my top ten list of things I do not want to ever do again. I don't want to complain and did not do so to the doctor. She asked if I was alright and I gave her a hearty thumbs up. She is saving my life so she gets to poke and prod all she wants, and apparently as deeply as she wants. I remember in the past watching medical dramas with David when they would show doctors dialogue during this procedure and me doing the scrunchy eye, shrugged tight shoulders, tight eyebrows, screechy oooh. That was a right response. It hurt, and it just felt very invasive and vulnerable. I don't know if she has to do that again, but I'm hoping not - I might find it difficult to lay so submissively a second time. I'm hoping that those results as well as the PET scan comes back with clear marrow and organs. More involvement means more treatments. 

I have an appointment tomorrow to have my hair cut short. I feel this prudent for several reasons. Somehow it feels like I'm taking control of that a little bit, I suppose there is some small amount of satisfaction in that feeling. I don't think long stringy hair will trick me into thinking I still have hair. Mostly, I think it will help, especially the younger of my children, by having a transition to bald. A couple of weeks of short might help them feel less shock. Angeline wants to cut her hair short too. I have asked her not to do that unless it is something she feels she just really needs. I love looking at my beautiful girl, I don't think I could bear her beautiful mane sacrificed. While we all have an incredible sense of peace, there is still emotion attached to these real moments that the sickness yields.

A note about my oncologist. Dr P, I will call her. I am very comfortable with her. She instills confidence in all her communication with me. She is as concerned with my comfort as she is with my healing. When I learned I had to stop taking my thyroid medicine I had some panic. That has been my "magic pill" for some time now. I was nervous about the drain of chemo being combined with the strain of a possible thyroid storm. She understood my panic without my explanation and immediately addressed the issues she understood would arise as a result of stopping that medication as well as carefully explaining why she believed it the best course for me. She repeated multiple times her desire to be informed of any discomfort I experience so that she may address it. She was emphatic about this. 

And finally, thoughts about holistic medicine that several are asking us about. We researched it. I intend on using some essential oils and following some dietary guidelines. David and I both believe it's time for the oncologist. I have had great success with herbal remedies over the years and even enjoyed learning and mixing them up and dumping them down my kids throats. I can feel the pressure of this cancer increasing in my chest. I feel the knots growing in number and size. I reached a point that I was coughing more than I was breathing, scratching more than resting. It's time to kill this cancer. The long term statistics for this mainstream medicine are wonderfully positive. It's difficult to transition from not even eating orange cheese (because of the chemicals) to swallowing a whole meal of pills (not to mention the chemo drugs), but I truly believe this is what is going to save my life. Dr P is my new best friend.

Sunday, April 14, 2013

The Diagnosis

April Fools Day 2013 - I am very rarely surprised. I like surprises, it's not that I avoid them. I just pick up on things and tend to see what's coming, just kind of instinctual that way. I guess I did pick up on it actually, just not in advance. I heard the surgeon in the hallway. I was his first appointment that afternoon. I heard him arrive and speak to his nurse. My surgeon is a very funny, jovial, hardly a serious moment kind of guy. He often says things like, "Oh I do these all the time, this will be nothing." about things like bilateral hernia surgery. Much more likely to hear that than any type of explanation on procedure. When David and I first met him we decided he was just this side of, "he's a little too flaky to cut into me." I heard his voice subdued and quiet, not the loud laughing that is normal for him. Then I realized he had stepped in his office and was on the phone. I could not make out what he was saying, only his tone, but I just knew it was about me and he was digging for answers. When he opened the door to my room I knew I had been right, I would not have guessed he was capable of looking so serious. He surprised me with a cancer diagnosis. No April Fools announcement for me that day.  

The Short Version

For everyone who does not care for long versions just read this and have all you need to know.

After two+ years of coughing, itching madly and a variety of other symptoms, visits to 7 different doctors, multiple scans, biopsies and labs and various diagnosis and misleading explanations, I was, on April 1'st, finally diagnosed with Hodgkins. The B cells in my blood are mutated - they are cancer cells. The cells divide rapidly and don't die as they should, so they are collecting in nodules throughout my body. The good news is, it is a "treatable" cancer. The bad news is, I have to have treatment. I don't know exactly what my treatment plan will be just yet. I will be undergoing more testing to determine the stage of the nodular sclerosis which will dictate treatment. The treatment will involve chemo and radiation, the tests will determine the regime. The goal is remission. The chances of it returning are 50% in the next ten years, increasing after that time period. The success rate of treating this cancer is 95%. 

The Long Version

I started coughing well over two years ago. After realizing it wasn't going away I saw my gp (general practitioner), and went through a few months of him suggesting over the counter type explanations before he too realized it was not going away. Next, he ordered a chest x-ray which was clear and gave me an inhaler. Many months later he sent me to the surgeon to explore the source of an inflammation in my neck that had developed. An ultrasound of my neck and blood work was explained by the surgeon as mildly off, his advice was to do nothing and visit again in six months. By now, the cough had become constant but was still being generally regarded as an allergy itch. 

Meanwhile, I had also started itching like mad. Back to the gp who spent months diagnosing me with everything from dry skin to scabies to poison ivy. This too was not going away. I went to a dermatologist. After spending months of mad itching and slathering every oil and cream known to man on the itch, she called it "dry skin" and prescribed a cream to apply multiple times a day over my entire body. This tube was measured in point ounces. It wouldn't cover a babies body once much less mine, not even the "thin layer" as instructed would spread that far. So, I found another dermatologist. After several visits and lab work, I was diagnosed with every doctors favorite diagnosis - allergies. He explained that thousands of dollars in allergy testing would likely not find the culprit. He too prescribed cream, his at least was a pound tub with refills - but it did not help. 

I was doing less all the time. Fatigue and irritability growing worse by the day. In hindsight, I realize there were more symptoms I just didn't verbalize. I now recall saying frequently to David, casually, "I wish I would just feel good again." Also, other much more serious, in terms of demanding attention, issues were arising.  Our entire family "enjoyed" a holiday flu epidemic that put us all out for about two weeks. While the others healed and worked back to their old routines I just could not seem to bounce back. It had become blatantly clear that I was sick. I decided it was time to change to a new doctor for general practice. 

My new doctor immediately took my situation seriously. He realized my quality of life had diminished and believed that I should be enjoying good health. After careful consideration he decided that most all of my symptoms - except the coughing - could be explained by a thyroid malfunction. A trip to the endocrinologist confirmed his suspicion. I was diagnosed after several tests with Grave's Disease which explained all of my symptoms - except the coughing. That doctor initially was with the opinion that the large goiter could have stimulated a cough reflex. After another visit and hearing the cough again however, he decided it was much too severe to be attributed to the thyroid and felt I should explore the cause at a pulmonary specialist. The morning after the visit he suggested a pulmonary doctor, he called to tell me to first get to my gp. My blood work had come to his desk and it indicated an infection. 

I was very curious to see how the gp was going to diagnosis an infection I had no clue about myself. No sore throat or burning places etc. He examined me and then suggested we look at the most obvious abnormality - the cough. Another chest x-ray this time revealed an opacity. This was followed up with an mri which revealed the large lymph nodules throughout my chest, armpits and neck. Next I went to the pulmonary specialist who charged me a ridiculously outrageous sum of money to do, really nothing other than refer me back to the surgeon. Rolling me off to surgery to remove a nodule from my neck the surgeon was saying to me that he believed this wasn't going to be anything other than some fungal infection. Which is what I had come to think as well. My work with horses, I felt, could have exposed me to all sorts of fun things breathed in from the dusty air. That brings us to April 1'st. 

At some point in all this referring to this and that doctor I had the notion that I was having to keep track of too much and would botch it so I started demanding every doctor and lab send copies of everything to my gp. Glad I did because April 2'nd I had Graves and lymphoma and no doctors appointments. I scheduled with my gp who directed me to a hematologist oncologist. I have a million and twelve questions not only about the cancer but about how to manage the Graves while treating the cancer. While I will learn a lot in the months to come I suspect not knowing some answers is also going to become a norm. 

Thursday, April 11, 2013

Hodgkins Lymphoma

Really, I like to keep my world small. Incredibly, I am very blessed with more than a small number of people who care. People who want to know what's happening in mine and my families lives. I have honestly struggled with letting anyone know at all that I have cancer. I'd like to just slide through treatment and get back to life as usual. Cancer lesson whatever number I'm on, it's in charge to a certain degree now and it demands to be seen. How wonderful to enjoy a life with people in it who are fulfilled by loving others. The reality is, I'm going to be needing that encouragement. The goal is, to surprise everyone with Jesus' peace overflowing. I choose to be in love with Jesus, so I don't get to just keep in my small world and slide by, rather there has to be an eternal, global type element that flows freely at times. There is a tendency in people to want to get in the car and come visit when they learn about my diagnosis. We love company! The problem that arises is too many visitors. I am hosting cancer right now and it is rather demanding both physically and financially. So just call and ask David. He yearns to say yes to company but will say no if he thinks cancer is filling enough space to squeeze out visitors. 
I know I have not shared the beginning of my story. I will, in the days to come, share the long journey of figuring out what in the world was causing so many unhappy symptoms in my body. I'm still digesting it myself and wrapping my mind and heart around sharing the story with others. Word travels quickly and I have been sufficiently counseled on not keeping this so private. I understand that others want to pray and that I and my family will benefit tremendously from shared prayer and encouragement. More than anything however, I feel really peaceful and I'm hopeful that that incredible, eternal, reality of Jesus presence in my life will wrap itself around others so much more than the drama of some mutated cells in this borrowed flesh. It's really not a big deal, even when it feels like it is. He Is a big deal even when it feels like He's not. Romans 8:18 ...the sufferings of this time are not worth being compared with the glory that is about to be revealed...
Thank you for visiting the blog, visiting me here. Thank you for leaving comments for me to read. Much love to all my dear family and friends.