Back to Writing my Ponderings

Here I sit, in the dark, except for the light from my laptop. It's 2:30 AM, unable to sleep because thoughts, plans, ideas, creations, concerns & prayers fill my brain one after another. This seems to be the appointed time--reminiscent of times past--to Ponder.  This compulsion to open my "blogspot" page (after a few failed attempts at remembering my password) is the result of a stirring that has been becoming more pronounced over the past month or so. I've sensed a pull, calling, nudge--call it what you will--maybe even a leading, to get back to writing my Ponderings.  For what purpose?  I'm not certain. I'll let God figure out those details, I just want to be obedient and open to the Lord's leading and do what He is asking me to do.

Clearly, I have not had the nudge or urge to write for quite some time.  Just a glance at the picture and topic of my last post it is easy to know that a lot of life has happened since my last post.  Ah! What a great thing to be able to say... "A lot of life"...  Let me catch you up with the "Reader's Digest" version of the last 2-1/2 years:  I now have a full head of hair.  After the initial fuzzy hair that came in, my 'real' hair came in slightly darker than before, not too many gray hairs, and just as thick as before.  I completed my 2 years of maintenance chemo in August and I'm still in a good remission.  Currently, I am seeing my oncologist every 2 months, with another follow-up CT scan in February, then I will move to a quarterly follow-up schedule. I now have 2 married children and 3 grandsons!  I am healthy and feeling great!

Back to this early morning Pondering--

Honestly, I'm not sleeping well because my thoughts are filled with concern for a dear one close to me.  I have been discouraged, worried and sad, praying for the Lord's intercession,  protection and healing for this person.  As I was tossing and turning a short while ago, a single word came to mind.  Interestingly enough, this word has been a theme for me this past year, but somehow I have forgotten it these past 3 days.  The word is HOPE. This isn't fluffy, toss-a-penny-in-the-fountain-wishful-thinking-type of hope.  This is confident hope that comes from personal experience and the many times God has interceded and done the seemingly impossible in my own life.

I just re-read this verse I have bookmarked in my YouVersion Bible App:

 Psalm 27:14 (Amplified version):

Wait and hope for and expect the Lord; be brave and of good courage and let your heart be stout and enduring.  Yes, wait for and hope for and expect the Lord.

Such a good reminder.

I'm feeling rather sleepy now.  I think I'll close my eyes for a couple of hours before my alarm clock announces the morning.  It's good to be back Pondering and once again, sharing life with you all!

Living in Remission

Once again I feel the need to apologize for such a delay in writing. So many have reached out to me asking how I'm doing, what does life look like these days and so on, and I'm so appreciative. Let's see, where to start?

Last time I wrote it was to announce that I was in remission.  So much of life has happened since that last blog post:

•   I have gained a son-in-law! Yes! We did a wedding 7 weeks after my last treatment! It was a blessing in disguise as wedding-planning was a nice distraction from side effects and was a very hopeful, positive "project" that infused my days and life with energy.  I was so thankful and was and am in awe as to how the Lord provided in multiple ways for the event.  At first I felt the need to remind Him that I had not worked for 6 months because I had been doing this cancer thing, which added up to continual hospital bills not covered by insurance, and, remember (?), my husband had been off work multiple days each chemo cycle to care for me over the last 6 months.  But as usual, I didn't need to remind God of anything.  He reminded me of how present He is, mindful, loving and generous.  He provided in multiple ways for the wedding, not only financially (in rather miraculous ways), but down to the details including clothing, venue and my daughter's wedding dress.  The day we went wedding gown shopping--again, a miracle that I had energy and was physically able to go shopping with her--they were having an in-store drawing for dollars off  a dress purchased that day.  The drawing was for anywhere from $25 to $500 off the purchase price.  My daughter randomly picked a card and drew the $500 off coupon!  It was the only $500 ticket left in the stack of more than a hundred cards!  She found her dream dress in less than an hour and spent $500 less than the retail price! Anyone who has put on a wedding, even the most budget-conscious wedding (like ours) knows it still gets expensive. But again, our needs were met and Miss S became a Mrs.  We are so happy for them and thankful for our new son. 
• I'm going to be a grandma!  Our first grandchild, a boy, will be arriving around the first part of November, and yes, it will be the first child for my daughter and new son-in-law.  We couldn't be more thrilled.  Once again, God is showering us with His grace and goodness.  Sadly, at first glance, I questioned the timing of things, and wondered if perhaps I needed to remind God of what the last 6 months had consisted of (I refrained) however,  He reminded me of last November.  I so clearly remember receiving my diagnosis of cancer last November and at that time not knowing my prognosis, how ill I was or how treatable this cancer was. In that in-between-waiting-time, I had wondered if I had seen my last birthday (also in November), if I was going to celebrate my last Christmas, and if I would ever hold a grandchild of mine. As I sit here today and allow the journey of the last 8 months to wash over me, I feel tears welling up again as I think of the Lord's tenderness and sweetness in blessing our family with this new little life.  Again, I am refreshed and in awe as I see the infusion of life and hope after a season of "walking through the valley of the shadow of death."
• I have gone back to work. I've been working for about 8 weeks now! I was so thankful for the opportunity to ease back into work and gradually get my bearings. The first couple of weeks felt disjointed and awkward.  I felt like I had to learn an entirely new set of social skills.  My Territory Manager and co-workers were so gracious and helpful, and have continued to support me as I get acclimated. The fatigue factor was very present in the first month of work, but now, I feel like I'm barely experiencing fatigue, or at least not to the same extent I was.  My energy level continues to increase weekly, if not daily.  I'm so thankful for the opportunity to work and focus more on others rather than my own health!
• In July, I began my maintenance therapy.  I was a bit anxious at first, not knowing what this follow-up treatment was going to look like; I have only had my chemotherapy cycles as reference.  I was very pleased in that the maintenance therapy is much less of a production than the chemo days.  This treatment is only 1 element of the therapy I was having in previous months, therefore the amount of time in the chemo chair is much less; about 2-1/2 to 3 hours compared to 5 hours, and very little to no side effects!  My biggest side effect was the drowsiness I experienced from the Benedryl they gave me! The appointment still consists of blood draws and talking with my oncologist, but the tone of the appointment is different.  It feels more hopeful and optimistic. Certainly there are still the questions regarding possible symptoms suggesting the return of cancer, and the reminder that this battle is not done, but it is encouraging to be in another stage or part of the journey.  I will be having this treatment every 2 months for the next 2 years with the goal of keeping me in remission.  I will have a CT scan every 6 months over these next 2 years to keep on top of any possible cancer cell re-growth.
• Living in remission is tricky, but I'm figuring it out, one day at a time. In the weeks just after receiving my "remission" status, I felt extremely fragile and vulnerable, even frightened. (My doctor told me this is very common and that remission can almost be more difficult than the treatment phase of things, and that many patients experience Post Traumatic Stress at this point!) I was given a list of physical symptoms  to take note of (which may suggest the possible return of the cancer), and also told when to call the doctor.  Before I was diagnosed with cancer, I easily explained away the symptoms I was having as being viral (the first doctor did too), being out of shape, 'middle-aged female', etc. I didn't feel that awful for how sick I was.  Now, fast-forward to being in remission; how do I balance the need for being attentive and mindful of my health, with being practical and calm without becoming hyper-vigilant, neurotic or in denial?  It has taken quite a bit of practice and one I have to continue practicing.  The fear factor has greatly diminished,  and I  realize that I just need to focus on one day at a time, enjoying it to its  fullest.
•  I am thankful for every day and am enjoying the blessings of this life.  For example, I have been so thankful for berries these past many weeks. What a joy to be able to go pick them, have the energy and stamina to do so, be healthy enough to pick them and not be out of breath, eat them (my taste buds are back!) and taste all their sweet and sour notes, and celebrate the wonder of their shape, and brilliance of their color.  And then there is the return of my hair!  Don't get me started, but suffice it to say, I'm so thankful my hair is growing again and coming in fast!  It definitely has more gray sprinkled throughout and is a lighter brown than before, but I'll take it!  It's all mine! 

I guess that catches you up on things. I am enjoying a much smoother road on this part of the journey; hope-filled, paved with blessings, joy, peace and gratitude with an occasional weed or rock thrown in.  I'm going to take some deep breaths and stroll this path for as long  as my legs will carry me!

My New Favorite Word: Remission

I heard my new favorite word yesterday:  Remission!

It's true!  If you're on Facebook you may have already heard the news, if not, you're hearing it now--I'm in remission!

I had a follow-up PET scan on Monday and an appointment with my oncologist yesterday to review the scan. My doctor could hardly hold back her excitement.  When she entered the room she did the customary, "how are you doing today?"  and then with a big grin on her face said, "your scan looked really good!"

I'll confess tears began running down my face as I responded with, "it does?"

She jumped right into things and showed a side by side of the before and after scans.  The picture on the left showed a large mass in my abdomen, another located along my spine behind my heart and lungs, and multiple lymph glands around my neck, under my arms and groin area, all dark with cancer. The cavity around my heart and lungs showed fluid build-up and my lungs and breathing were greatly compromised because of it.  The right lung was only half inflated with air.

Then we focused on the scan on the right, the scan from Monday: no masses could be seen anywhere, and all the lymph nodes once dark with cancer were not even detectable on the scan. My lungs are both completely filled with air and healthy again, and absolutely no fluid is left in the cavity space.  My heart is as healthy as ever.

So what's next?  Going forward, I will be having some preventative maintenance treatment every 2 months.  This will involve just one component of the chemotherapy regimen I had over the past 4 months.  The goal and hope is to keep me in remission for as long possible.  With my type of cancer, follicular lymphoma, it is expected that it will return again--and usually does-- as they have not yet developed drugs that can "cure" it.  I will be under the watchful eye of a very knowledgeable oncologist and a band of health providers giving me the best treatment possible.  Routine blood work will be done at every office visit and treatment session and another CT scan will be done 6 months from now to check in on things.

For today, I am celebrating along with my family.  We are so thankful and joy-filled.  Please know that each of you have been a very integral part of this journey so far and I hope you will celebrate along with us at how your intercessory prayers for healing and strength have been answered. God has been so gracious and loving through every moment and day. Thank you for all the meals you have brought to us, for the cards, texts, emails and words of encouragement and for standing shoulder to shoulder with me/us in this battle.

I don't know what the future holds, but today, I'm celebrating!

In the Waiting Room

Wow!  How can it be almost 2 months since my last post?  I apologize.  So many have been asking how I'm doing and next steps.  Let me get you caught up on things.

I think the best way to describe the current phase is that I'm in the "waiting" stage of cancer.

Waiting for next Monday (5/12)  when I will have another scan to detect any remaining cancer cells.

Waiting for next Tuesday (5/13) when I see my oncologist to find out the scan results and the "game plan" going forward.

Waiting for my body to gradually recover from the months of chemotherapy; to regain my appetite, my taste buds, my energy, my immune system and my full brain power.

Waiting for my hair to grow back.  (It's already begun! I have a fuzzy head and look a little bit like a baby bird just getting its first feathers.)

Waiting to see when I will be physically able to go back to work and other activity.

Waiting.

Since my last post, my infection cleared and I proceeded to have 2 more rounds of chemotherapy.  My last treatment was on April 15.  Currently I am in the post-chemo recovery mode and at the 3 week mark.  I am feeling stronger every day.  Today I was doing a little happy dance (very little) as I realized that if I were still having chemotherapy, today would be the day I'd go in for another round, but I'm not!  Woohoo!

Now that I have completed chemotherapy, it is a process of allowing my body to recover.  There is no set time frame for this, however, my doctor is optimistic and feels/thinks I may feel good enough to return to work and regular life activities around the 6-7 week mark after my last treatment.

What's next you may ask?  Well, for now I have been enjoying a 4 week break from my doctor.  I feel like I'm having spring break!  Since December, I have been in the doctor's office/clinic every week, so having a 4 week stint where I haven't had to go in has felt luxurious. I know there will be many more regular doctor appointments after next week, whatever the results are, so I'm soaking up this time off.  As my doctor put it, "we're going to be seeing a lot of each other over the coming months and years."

New happenings on the home front since the last post-- we have had an engagement in our house!  We are very excited and have been making wedding plans which have proved to be a nice distraction, even energizing.  It feels 'life-giving' in a sense in that it is joyful, hopeful and something to look forward to after a season of so much hard "life" stuff.

I think that catches you up.  We're still praying for complete healing and that no cancer cells will be present.  I know so many of you are praying the same way.  Please know I will update you on things next week and let you know the results.

Through all of this, and especially in the last many 'waiting' weeks, the overwhelming theme or words that continually have come up are "trust" and "hope".  I don't know if you're like me or not, but when the same theme pops up in my devotional or in verses I'm reading, or someone else shares something along the same line, I know I need to pay attention! This has been an overwhelming theme throughout the last many months and even these past couple of weeks.  When I'm questioning the timing of things, or feeling discouraged, or anxious about the days to come, I'm reminded of  this passage in scripture that has helped me regain my focus and has allowed me to find rest and peace in the midst of uncertainty:

Jeremiah 17:7,8 (Amp)
"[Most] but blessed is the one who believes in, trusts in, and relies on the Lord, and whose hope and confidence the Lord is.
For he shall be like a tree planted by the waters that spreads out its roots by the river; and it shall not see and fear when heat comes; but its leaf shall be green. It shall not be anxious and full of care in the year of drought, nor shall it cease yielding fruit."

I'm so thankful for God's faithfulness throughout this journey. Whether or not I am healed of this cancer, there has already been a lot of healing and good that has come from it: He has truly given peace when it doesn't seem logical or possible; He has surrounded me/us with overwhelming support and love; He has healed some old wounds and restored relationships; He has helped me become refocused on what is important and those things that are not as important; and He has given new life to hopes and dreams in so many ways.

I'm just so thankful.

Update: Yep....Still not in control of this journey

Today was another day of being told I wouldn't be having chemotherapy.  I was hoping I would be given the green light, but in truth, I had a hunch I would be told we need to wait to figure out the source of my fever.

I have had a low grade fever for about a week now.  Nothing really remarkable, but for a cancer patient in the midst of chemotherapy, 100.8 (for my clinic and doctor) is considered worrisome, and  more investigation is needed.   My temperature has been all over the place, coming and going, higher and lower than that listed, but present.

Last Friday when I went in for chemotherapy cycle # 5, after many blood draws, tests, chest x-ray, other tests, and everything coming up negative, it was decided that most likely I have a some kind of virus.  Rest and Tylenol was prescribed for the weekend with hopes that I would feel better by Monday (today) and be able to have treatment.

Over the weekend, I developed swelling and pain at one of my biopsy sites from 3 months ago.  Although my fever had come down and was barely there, my discomfort and pain level increased.  Even today, the swelling was worse.

The plan going forward, is that chemo is on hold until I can get healthier.  Delaying chemo is not ideal, but it necessary to achieve that tricky balance in what my body can and cannot handle.  Since lymphoma is a blood cancer involving white blood cells, my infection-fighting army is downsized with each chemotherapy cycle, as treatment not only kills the cancer cells but the healthy white blood cells as well.

On Thursday I have an appointment with the surgeon to get his input as to the next steps.  It may be likely that the best approach will be a day surgery to drain and clean the affected site if needed, a course of  antibiotics and a short time to heal before I continue with treatment.  I'll know more on Thursday.

I'll be candid, these last few days I have felt frustrated and annoyed, even inconvenienced.  I had everything so neatly planned out and was anticipating being done with chemotherapy by the end of the month.  Now, it is up in the air just a bit.  I was informed early in the process that it is not uncommon to have delays or interruptions, but I'll confess, I have had it in my brain (and have been determined) to just keep marching through therapy without any hiccups.Which I have been doing up until now.  The doctors and nurses often have remarked how well I'm responding, that I have 'good color', and that my body seems to be handling the chemo so well. Everything has been going so smoothly and results have been so great that I have been lulled into a false sense of  'everything going as planned' but somewhere in the midst of things, I once again took hold of the reins, thinking I was in control.

Here I am today,  presented with yet another opportunity for growth as I'm brought face to face with the reality that I still do not have control over this journey, despite however much I would like to, or fool myself into thinking I do. (please refrain from saying  "Well duh!" or leaving a comment of this sort). Once again, I am making the choice to lean into this delay, and all that follows in the coming days, trusting and resting in the knowledge that this is all for my good, and that God is able to work out the timing of everything--and then help me be okay with it all too!

Coffee, Hair Clips and Prognosis

It all started with a cup of coffee.  Well, actually, it was a whiff of coffee as I walked  past the small coffee stand. My immediate thought was, "gosh, I want a cup of coffee." Ordinarily this would not be a big deal, but it is when I, a once avid coffee drinker, have not had a cup of full-leaded coffee, be it black, mocha or latte, in over 4-5 months.

One of the physical annoyances of this lymphoma is that I have not been able to tolerate certain foods (spicy types, beans of any kind, some vegetables and fruits) and beverages such as coffee. Typically, I have not had any issues with these foods prior to developing lymphoma although in retrospect, I was having some tell tale signs. Quite awhile before I was diagnosed, I began noticing that coffee,regular/decaf, didn't matter, was upsetting my stomach and even the taste was somehow skewed.  Mind you, I have been a coffee drinker for years and had my daily morning ritual of making coffee first thing, often looking forward to that early time of the day where I could sip my coffee with my favorite creamer, sit by the fire, read my devotional and journal, or just absorb the quiet and calm before a busy work day.

Those days of morning coffee have passed (now it is herbal tea), but my silly mind still wants coffee. Actually, I think what is really happening, is that my mind likes the idea of coffee, bringing with it feelings of calming enjoyment and sweet flavor.

 Not unlike the desire for coffee and forgetting the consequences if ingested, my mind has other lapses of reality. Just the other morning as I was getting out of bed, I grabbed a hair-butterfly-claw-clasp-thingy off the night stand with the intention of bundling my hair on top of my head to get it out of the way and off my face. It took a couple of beats and then I remembered that hair getting in my face is not an issue I have at this present time.

Our minds are such tricky things.  They can be so powerful at grasping truth and at the same time they can be so subtle, even deceitful, in avoiding it. I'm realizing this more and more as I've gone through the layers of processing every step of this journey. Take for instance the process of going from early symptoms and thinking I had some kind of virus, to tests being conducted, to biopsies being ordered, to multiple CT scans, to a visit with an oncologist, yet another biopsy and then chemotherapy.  Each step of the way, I have had to get my mind wrapped around the information and the next steps. It didn't happen all at once, but rather gradually and in small increments.  I so clearly remember that first appointment with the oncologist, when she asked how I was doing with all of "this". My response was something like, 'I still can't believe I'm sitting in your office and that you are talking about me'.

 Now, fast forward, and here I am, more than halfway done with treatment. Anticipating session 4 on Valentine's day (because nothing says 'I love you' like a day of chemotherapy!?!), I'm not nearly as anxious or apprehensive. In fact, I am seeing and experiencing the benefits of chemotherapy and have a better rhythm and routine of how to deal with side affects following each treatment.  My mind has made many adjustments to get to this place, the most pronounced being accepting that this is what I need to do to get healthy.

As I mentioned, I reached the half-way point a few weeks ago. Realizing I've been so focused on treatment, and not really thinking about my prognosis and what recovery looks like, it seemed time to discuss this with my doctor and ask about the coming months and what can be expected.

"We'll be seeing a lot of each other over the coming months and years" was the doctor's response. In my gut I wasn't prepared to hear that, but on a cognitive level I knew that seemed right. There has to be follow-up, right? She continued on to say that the hope is still that I will enter into remission (no cancer cells present) after these chemo treatments, but, she added, "this is follicular lymphoma" and to paraphrase, it is expected that this cancer will become active again, because that is what follicular lymphoma does. I'm not sure if things got better or worse from there as I once again entered that head space of 'you're talking about me?', but she went on to explain that should there still be cancer cells present after therapy is completed, there are other "things we can do" that involve alternative chemotherapy regimens, other treatment options, and so forth. 

The  wheels of my brain were churning.  Hmmm, this is not what I was wanting to hear, even though I already 'knew' that a re-occurrence of this cancer is likely as we had had prior conversations about this. My heart and mind have been so set on getting to remission, feeling better and moving on with life that truthfully, I haven't been willing to entertain the idea of not being cancer-free.

Needless to say, I had a much needed meltdown many days later while I tried to process this. I had been feeling pretty down in the dumps for several days and realized it was because the doctor was telling me things I didn't want to hear.  The beautiful thing about having a 'meltdown' however, is that another layer of reality becomes understood in the process, at least that is what I have found to be true for me. There is a great release that happens through tears, tantrum-throwing, anger, or sorrow; it enables me to come to a place where I can move forward. 

I realized, after many tears were shed and I spent time talking this through with my husband, that my mind has been trying to grasp at the familiar and 'normal' (like coffee and hair clips) to feel calm and settled inside. The reality is that my life will never be the same again, with or without cancer in the future.  I'm a changed person now because of this and I have to let go of my old life-- my old 'normal'-- and embrace the new. The future, regardless of what it holds, already is different, changed and new.  

Ahh, another layer of this journey being processed, and my mind is once again wrapping itself around it. Just like the step of shaving my head, I am finding a sense of freedom as I lean into this next step. In retrospect, I  couldn't even imagine doing chemotherapy, and now, here I am nearly two-thirds of the way done; I couldn't imagine losing my hair, and now I marvel at my little bald head and am finding joy in not having to blow dry my hair every day! (Showers are much quicker!)

Two truths I've come to experience and know: 

 -- I only have to do one step at a time, and one day at a time;
 -- There is always grace for each step and each day.  

I remind myself almost daily of the truth found in this passage of scripture, Lamentations 3:22-24. (This is the New International Version):

Because of the Lord’s great love we are not consumed,
    for his compassions never fail.
 They are new every morning;
    great is your faithfulness.
 I say to myself, “The Lord is my portion;
    therefore I will wait for him.”