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.”

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THANKFUL

I had a weird dream last night.  Evidently I had decided to take a spontaneous trip to Southern California.  It was last minute, no planning involved, but somehow I had the time and financial means to do it. At some point in the dream during a conversation with a hotel clerk, I realized that it was Thursday night and I had chemotherapy the next morning!  I was suddenly in a panic.  Why did I decide to take this trip knowing I had chemo the next morning? What was I thinking?!  The next few, brief moments of my dream were spent trying to figure out how to get a flight home in time for chemo in just a few short hours.  Then I suddenly woke up.

Ever have those dreams where it seemed so real that when you wake up you are out of sorts?  That is how I was this morning.  My heart was pounding, I was disoriented and I was in a panic thinking that somehow I had missed my chemotherapy appointment.  After settling down and giving myself more time to wake up, I was doing much better but wondered why I would dream something like that. When I thought about it more, I realized my brain was just working through parts of this journey that I've not spent a lot of time processing.

If I'm honest, some days I do wish I could take a vacation from all of this.  How wonderful it would be to take a trip, have energy to actually do it, go somewhere fun like Disneyland and just play and be carefree.

I definitely have 'those days' where my attitude is not all that positive; I may be feeling especially fatigued, bored, physically not feeling good, or any number of reasons. Thankfully those days are few and far between. To help counter some of the negative thinking,  I have been really attempting to 'give thanks' throughout this cancer journey, and do it on a daily basis. This is not 'new' thinking--I realize this--the Bible is filled with the urging to give thanks everyday. While I'm praying I will give thanks for these things but I've also started a list that I add to every few days.  I'm certain many of us have done this from time to time, perhaps we've taken part in the the daily thankfulness posts on FB for the month of  November; maybe we've kept a gratitude journal (upon Oprah's urging way back when).  We probably find this much easier to do on the "good" days, but it is a bit more challenging on the "bad" days. What I have found, is that writing things down helps me stay focused, and then I can easily review my list, especially when I'm feeling a bit down or entertaining the idea of a pity party.

I want to share with you some of the things I am so thankful for on this eve of chemo session # 3.  

• I am thankful for each "week 3".  The first 2 weeks after chemo I feel physically pretty lousy.  This cycle, like the first, as week 3 arrived,  I have felt more like myself,  feeling a little more energetic (it's all relative!) and enjoying having an appetite and eating food! "Week 3" gives me hope of good things to come and  helps me work through those initial 2 weeks after each chemo session. Because of week 3, I am able to be more independent and get out and about on some days, which brings me to the second thing I'm thankful for--

• Driving a car.  When I got behind the steering wheel of my car earlier this week, I realized it had been about 3 weeks since the last time I had driven!  I was reminded of the feeling of independence.  It felt so good!

More things to be thankful for:

• Eye brows and eye lashes!  I still have mine.  There is a chance I may keep these, but was told that it was likely I will lose all my body hair.  I still may lose them, but for today, they're here, so I'm happy!

• Sunshine!  Born and raised in Oregon, I'm used to dreary, rainy January days.  I'm so thankful that this January in the Northwest has been atypical.  I can't imagine how it  would feel to be going through this process and have it be gray, dreary and damp all the time!

Another area of thanks--financial provision.  One of the many layers of this journey, and a very real component, is the financial side of this.  I have been on a Leave of Absence from work since before the first round of chemo, and will continue on leave until the course of treatment is completed. We abruptly went from 2 incomes to 1, which I'm sure you can imagine how this quickly changes one's weekly budget, and adjustments have to be made immediately.  Yet there are many things I'm thankful for even in the midst of a tight budget:

• Good insurance coverage through my husbands employer.  Thankfully there have not been any changes in coverage and things are continuing seamlessly.

• All the many meals that have been provided have helped lower our weekly grocery bills! I can't believe how this has impacted the number of  groceries we have had to purchase, which really has helped to stretch those dollars for other expenses like utilities. 

• Lower gas purchases. Since I'm barely driving, we're spending half of what we used to on gas for the cars.

• Unexpected rebate that came in the mail, perfectly timed of course!

• A small check from the Leukemia & Lymphoma Society for additional expenses because of the cancer (prescriptions, gas money because of all the trips to the doctor, etc.) This is a one time deal, kind of like a 'welcome to the club' gift from the Society. Granted, this is probably a "perk" most would prefer to pass up and not qualify for.  :-)

• A free wig from the "Transitions" center at the hospital.  The wigs are all from previous cancer patients that pass them on so others can use them while they have a need.  The American Cancer Society helps fund this and provide them free of charge.

• gifts of scarves and hats from friends and family to use and have during this time.

• gift cards received from several different people for different services or vendors.

And still more things to give thanks for:

• I am physically feeling better already. Many cancer patients, because of the type of cancer they have, go through chemotherapy trusting/hoping that the therapy is doing its work and shrinking the tumors.  However, often, with Lymphoma patients and the kind of aggressive chemo prescribed to treat it (which I'm having), patients can begin feeling better right away. And I am!  I am amazed.  I can breathe easier, I am sleeping on my back and side--something I have been unable to do for months because of breathing issues due to the size of the tumors.  I also have a waist again!  Because of the large mass in my abdomen, I had lost my waistline.  About a week ago, my waist started emerging!

And finally, I'm thankful for all the support we have received even prior to a diagnosis from my employer, co-workers, family, friends, friends of friends, acquaintances, strangers, doctors, nurses and on and on.  I know I keep saying  this, but it is so true, we are overwhelmed by all the love, prayers and encouragement we are all receiving from all of you.  Thank you!  It really helps, especially on "those days".

New Image/ New Identity

Chemo session #2 was successful and thankfully uneventful.  I  felt much more at ease this round as so many of the unknowns of doing chemotherapy were now know.  I was also feeling stronger about being my own best advocate rather than just accepting and doing everything they were telling me to do. A good example, and one I'm so thankful I followed through on, was their choice of anti-nausea medications. Before the chemotherapy even begis, the technicians infuse my system with anti-nausea medications, Benedryl and Tylenol to lower my body's natural defenses. and responses. Back tracking a bit, during the first cycle of chemo,  I had experienced horrible headaches during therapy, afterward at home and in the weeks following therapy.  It was suggested I just take Tylenol for the headaches as they can be part of the process.  Upon further reading and tracking when I was taking medication at home, I discovered that their "go to" anti nausea medication was the source of my headaches! This is one that 'most people' tolerate well and works for the general public (Zofran) but in reality it was making me feel worse!   So, this round of chemotherapy, I asked that they used something different -- actually I just told them I wasn't going to do Zofran---(which meant new "orders", slight delay in start time, change in IV medication, etc.,) but they gladly complied and agreed it was worth a try.  (I love how supportive they are at the oncology clinic.)  It made all the difference in the world--not one headache yet this round! The entire course was completed in about 7 hours which will more likely be  the "norm" going forward; long chemo days, but  uneventful.

This first week post-chemotherapy session #2  has proven to be similar to the first round; the daily challenge of holding nausea at bay, body aches and pains, fatigue and "chemo brain".  Listed as a real possible side affect in my 'cancer handbook', chemo brain makes focusing on anything a challenge--writing, reading, praying, talking, listening--basically any interaction with people is difficult. I do a lot of sitting and listening to conversations rather than participating.  It is still great to be around people even if  I'm not actively participating, but often the challenge of finding the right word(s) is just too frustrating and fatiguing.  I have appreciated the messages/texts/emails that I've received, and each are an encouragement and so up-lifting. Thank you for the grace you've each extended when you don't receive a response as I just don't have it in me some days.  Please do know that your contact means so much!  Even in posting a new entry today I take as a good sign that I'm improving, but will apologize for lapses in punctuation and correct grammar, and overall editing.  The brain still isn't up to speed....

 My "to-do" list each day is similar and revolves around drinking enough fluids, eating whenever possible, and often whatever I can force myself to eat as I don't have much of an appetite. Needless to say any Weight Watcher eating guidelines have gone out the window as I'm just focusing on getting high quality, high calorie food into my body! And actually, on some days I toss out the "high quality" part of it if the only thing I can stomach is a milk shake, then that's what happenig! (Just keeping it real....)

This week, my "to-do" list set me on a new part of this journey. In my last entry I shared that my hair was beginning to fall out as was anticipated.  Being in the early stages of that process, I needed to work through yet another change and shift in what was happening to my body, this one a more significant outward manifestation.

As I've processed all of this emotionally, I realized one of my biggest hesitations, or areas of resistance has been that I don't want to look like a person with cancer.  I know--what's that all about?  So I have delved deeper, wondering the same.

The first tell tale sign to the world of a person battling cancer may be the loss of hair.  I know when I've passed a woman in the store wearing a brightly colored scarf tied around and covering the majority of her head with no wisps of hair peeking out, I have thought, 'how rough, she probably has cancer or is in treatment', or something similar. I don't think anything negative of cancer patient, it is more a feeling of heaviness...wondering what her prognosis is, how is her family doing, what's her story, and so forth.

The other thing, in my mind, that comes in to play when doing 'cancer patient' profiling, is noticeable weight-loss and a change in the the pallor of the skin. It is a bit unnerving--even fear-inducing (there is that fear of the unknown popping up once again)-- as I see these things happening to me. My once familiar visage reflected in the mirror is now becoming unfamiliar.  (And truthfully I keep thinking how much I look like my mother did when she was battling cancer.)  The "tone" I had worked diligently to achieve in my muscles throughout my body is quickly being lost, the rosy, healthy glow in my cheeks is diminishing, and keeping weight-loss in check is on my radar.  I am watching myself transform into the poster child of the 50-something cancer patient.

I guess I wasn't prepared for what this would do psychologically, spiritually and emotionally to me, or better said, what it would bring to the surface. But, to be fair to myself and others with cancer, how can one be prepared?  It's a little bit like giving birth-- you don't know what that will be like until you do it.  Or you won't know how to be a parent until you are a parent, etc.   You can't "do" cancer and the process until you "do" cancer!  Yet again I am being shown areas of my life I need to release and be freed up from. The choice is clear: do I stay with familiar and "safe" and not deal with the cancer, or do I venture into new territory and all that comes with it, treating the cancer, and in the process, being physically transformed to a new image and identity?

Christ has come that we would be free.  A theme that keeps rising up as I'm listening to worship songs, reading scripture (when I'm able) or someone reads to me, is the reality that Christ came to free us from the chains that bind us--whatever they may be.  His desire for us is that we live a truly free life in Him, rather than be shackled or chained to this life by sin, insecurities, doubts, fear, worries and on and on.  When we are free in Christ and agree that HE is the only source of true freedom (through his sacrifice for us), then we can be set free from all this life "stuff" that keeps us weighted down, "stuck", hopeless, fearful or chained, such as being worried about looking like a cancer patient. ;-)

More and more, I feel like the layers of an onion are being peeled away as I go through this journey of cancer.  It really isn't about the cancer, it is about what God wants to restore, renew,  and rebuild. I haven't plainly stated it before, but want to go on record as saying this cancer isn't from God.  I don't believe God made me have cancer.  Cancer is part of a sinful, decaying, dying world, and is not "good".  I do believe because God's character is loving and good, I have the hope and even the joy in knowing that only God truly can make any 'good' come from this.  He has allowed this in my life and yes,  I am praying for complete healing, but while on this journey, I don't want to miss out on anything that the Lord has for me.  I'm praying He will use this to change me, grow me, transform me so that I look more like him all the time, into his image.


Feeling set free this week, even empowered a bit, I wanted to share these pictures with you of the transforming cancer patient.  Choosing to shave my head rather than continue to shed on everything, the event took on an almost ceremonial feel with my friend Michelle cutting my hair, my sister and husband observing, and my son (who has lost his hair thanks to my father's gene pool) doing some final touches with his own razor.  That age-old question "What would I look like bald" is finally answered!  I have to say it is a bit liberating!

Treatment Details

I hadn't intended for so much time to pass between posts, but just like anything on this new journey, I'm learning there really isn't a hard timeline for things other than doctor appointments. So, let me catch you up.  (If this is more information than you were wanting, feel free to skim or skip this post.)

The month of December has been a whirlwind just like November was.  I had another biopsy on December 6 to determine my exact kind of  B cell lymphoma.  Chemo was scheduled for the following Friday, the 13th!  I'm not superstitious in any way, but I had to smile a bit at the irony when I realized the date.

Here is a quick, truncated, layman's version of Lymphoma.  Lymphoma is a blood cancer involving one's white blood cells.  The DNA of certain white blood cells (for me, lymphocytes) becomes damaged--most often randomly and due to environmental factors (rarely is it due to genetics)--and rather than the body correcting the abnormality, the damaged cells start rapidly dividing and accumulating or "piling up" in the lymph glands.  These are the cancer tumors that develop in the lymph glands.

I have been asked numerous times what, if any, symptoms I had been having. I didn't have any of the typical or classic symptoms of lymphoma:  weight loss, night sweats or fatigue. With me it all started with a dry cough in September that developed into fluid around my lung, which led to a Thorocentesis (removing the fluid), CT scans, more tests, biopsies, and here we are today. The fluid around my lung was collecting as a result of tumors in my lymph glands located behind my heart/lungs/liver.  I have an even larger mass throughout my abdomen, behind my stomach and intestines. In retrospect, for the last 6 months or more, I had been having bloating and stomach issues which I chalked up to food sensitivities, not being able to tolerate spicy things as I'm aging and so forth. All the pieces of the puzzle have come together.

That day I was to start chemo began with an early morning PET scan (7 AM) to get a good picture of all the enlarged lymph glands in my body.  As a side note, I am so appreciative of the science and technology we have access to.  How amazing is it that we have machines that can create 3 dimensional computer images of the inside of one's body that show cancer cells in technicolor!

Following the PET scan, my husband and I went over to my oncologist's office. There more lab work was done, and then a consult with my doctor.  She showed us the scan from earlier that morning, and we were left a bit speechless.  It wasn't  new news, and we had seen previous CT scans in black, white and gray, but to see cancer cells "glowing" throughout my body, some in very large masses (tumors), was sobering.  It was at that time that the doctor informed me/us that she wanted to admit me to the hospital for the first round of chemo so that I could be monitored. This was a surprise to us, but evidently, this is not unusual for the kind of chemotherapy I am receiving.  The first session can take a long time, and it is not unusual to have some kind of reaction.  The other concern was that because this chemotherapy is so effective, and I have such large/multiple tumors/masses, the tumors would collapse too quickly releasing high levels of toxins into my body, which can create other issues.  So, while I adjusted to a 3 day hospital stay, I was thankful I would be in a safe, protected environment where I would be monitored and taken care of  'round the clock.

After going from the doctor's office over to the oncology wing of the hospital and getting settled in,  therapy began. As things turned out, I did have an allergic reaction to the first drug (which is expected) so it took HOURS to get just this first element into me, and LOTS of Benedryl and Tylenol! This is a biological drug that prepares and breaks down the outer layer of the cancer cells so they'll be receptive to the other chemo drugs. Supposedly subsequent rounds should go more smoothly as my body will now recognize this drug and not fight it as much.   The other 3 chemo drugs, that target and kill rapidly dividing cells, were administered the following day, one at a time.  After more blood work, it was determined I was in good shape and was able to go home Sunday around noon.

The rest of each chemo regimen is followed up within 72 hours by an injection of medicine to encourage my bone marrow to produce more white blood cells,  (which produces muscle and bone pains) as well as a 5 day course of a steroid!  Add to that anti-nausea meds as needed, as well as Tylenol for headaches and aches and pains, and, well...it is a lot!

The first week following chemo is a blur to be honest.  Okay, make that the first 2 weeks! I was loopy from the drugs, Benedryl and anti-nausea meds. I  was pretty non-communicative during those 2 weeks as talking on the phone, doing Facebook or any other types of communication were fatiguing and thinking itself took so much effort. (My apologies if you sent me a message, email or text and I didn't respond...I was pretty out of it for awhile.)

I would have to say I didn't experience horrible nausea, but lots of intestinal pain and stomach pain which made eating difficult and greatly decreased my appetite. Some of the pains may have been from dying cancer cells which helped me mentally tolerate the discomfort, but the majority of discomfort and pain was from the 15 pounds of water that had accumulated around my body following the first round of chemo. My clothes literally would not fit!  Evidently, during my allergic reaction in the hospital, not only did I receive lots of Benedryl, but the nurses had administered a lot of saline as well as my blood pressure was dropping, along with my oxygen level. There isn't a lot I remember during that time, but my husband does!  It was a bit hairy and stressful. So, the water retention was due to all the fluids they pumped into me. Over the next week  I lost the water weight and then additional pounds as the tumors shrank and I lost additional fluids.  All that to say, my body weight has had a fluctuation of 25 pounds in a 2 week time!  That will reek havoc on anyone! (And I do not recommend this to anyone!)

 Another side affect I have encountered is fatigue.  My energy level comes and goes and truly is a day to day thing; every day is different. Evidently the fatigue will most likely become worse as treatment continues. (!)

The amazing thing about this therapy, is that I already can see a difference in how I feel.  The doctor had said I would probably notice a difference quickly, and I do!  Nothing short of miraculous.  My breathing is easier, and the pressure that I have had in my chest for months has subsided greatly to the point that I can lay flat on my back and actually sleep.  I have not been able to do this for months.  In addition, the uncomfortable bloating feeling has lessened. I still have compromised breathing in my right lung, and still notice some pressure there, but I'm so thankful for this ray of hope that I truly am going to feel better!

This third week after treatment has been the most "normal" so far.  My appetite returned Christmas day and I have been able to eat ever since.  I am no longer having bouts of  nausea and have been concentrating on eating healthy foods, rich in nutrients and calories, to build my body up prior to this next round of chemo that happens on Friday.

One not so "normal" part of this third week is the reality of losing my hair. The doctor told me this over 2 weeks ago. I cried at first, feeling afraid of the unknown and mourning the loss of what has been a part of  me all these years. I like my hair and have enjoyed its thick texture, slight wave and that I still don't have too many gray hairs at this age. It will be sad to see it go as it is almost given that my new hair (after chemo is completed) will be a different texture and color.

Today, this process has started in earnest as large clumps of hair now effortlessly fall out. I'll be candid and let you know I shed a few tears today.  It is all an adjustment at each and every little bend.   I'm getting there, and  will get there...I just need to work through each step.  The next big decision is whether I am a scarf, hat or wig gal.  I'll have to "try" them all on and see what suits me.

That should catch you up on things.  I'll be back with more ponderings of the heart, but wanted to catch you up on the details first.