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.