Solitary Confinement

Once again, the steroids provided their usual effect of insomnia, which is wonderful if you’re planning your next strategy for saving the world or subsist as a video game fanatic.  Yet, I don’t fit in either of these categories, so I lay on my comfy mattress (thank God for memory foam) thinking about my current condition and my next moves (that is, blog entry) at 4 in the morning.  Unfortunately, the reality of being neutropenic (possessing a very low white count) leaves me fairly homebound.  While this may sound refreshing for some (like my husband), I am an extremely social person, as if you couldn’t tell by my profession.  Don’t get me wrong, the concept of a clean home would be extremely exciting and that alone will take me months.  However, Rome wasn’t built in a day and I certainly don’t speculate that my focus on this undertaking will last more than 1-3 hours (in 30-60 minute increments) each day. 

You see, one of the greater difficulties that have stemmed either from my body’s battle with the disease or the effects of the treatment, is fatigue and focus.  These 2 facets were nearly completely controllable in my past.  It seemed like my body had unlimited fuel when I was working and in my element.  Complete focus kept me plowing through large projects such as rearranging my closet or garage or completing over 150 desktop items at work, while seeing 20+ patients a day and returning a multitude of phone calls.  The loss of my energizer bunny state is more distressing to me than the loss of freedom to escape my germ-free zone.  After all, I still can go out in the fresh air for walks or healthy people can visit “the sanctuary”.   Lord knows, I’m catching up on all the TV shows/series that people have recommended.  None of which contain the pure humor of Home Improvement, Hogan’s heroes or Rockford Files.  Oh, how I miss my “old shows” but I abhor wasting time watching shows I’ve already seen when there is so much that I haven’t seen yet. 

Even when I do wander out of my confinement, into the fresh, open air (which has been mostly pouring rain as of late), my body still doesn’t give me long before surrendering.  When I wandered off with a friend to run a few errands last week, I felt the oppressive drag of fatigue after about an hour and yearned to proceed home to sit on my cozy recliner with my heated throw blanket to warm and relax me, so that I could recover and move on to another feat (of 30-60 minute duration).  The breaks required last longer than the activity itself, which is quite distressing.  Alas, it is when the inspiration of my blogs arises so it isn’t all lost.  And Facebook occasionally perks me up with its humorous and inspirational entries and of course, the wonderful moral support that people express.  My circumstance is similar to a prisoner in jail who is confined to the prison campus but still has access to TV, books, video games, gym, cafeteria, and outdoors for limited periods of time during the day, but not necessarily on their schedule.  I can see now why it is still a punishment.

As I write, I realize I haven’t even communicated my greater concern about being neutropenic.  The two things frightening me most are (1) the possibility of acquiring an infection that either sets back my treatment or lands me in a hospital and (2) the potential for developing a lower white count after this infusion which delays my next infusion, thus extending the duration of overall treatment.  This, would stall my return of energy and essentially my return to work and the freedom that I was so accustomed to previously. 

One may think, but not necessarily ask, “Do you think about this killing you?”  Not really.  It may be a fleeing thought occasionally but death really isn’t an option.  With the outstanding care team by my side and my astute skills at recognizing changes in my body (ok, I understand it took me two months of symptoms before seeking care), I believe that even if I were to obtain an infection or other ill effect, I would recover.  After all, I did just run the Boston Marathon this past April.    

Hope is being able to see that there is light despite all of the darkness. ~ Desmond Tutu (one of my favorites)

My Hope socks!  Seemed appropriate for today. 

Cycle 1 Day 15 - Neutropenia Arises

Today was my second chemotherapy infusion (out of a total of 12).  The typical infusion day will start with a blood draw.  Results return about 15 minutes later and then the oncologist comes to talk before getting started with chemotherapy.  The reason for this process is that it becomes too dangerous to give chemotherapy if one's white count (particularly neutrophils) becomes too low.  For me, the cutoff is 200, for others it is 1,000.  This means that if my count drops to 200 or below, I will have to prolong my time between infusions which will result in an extended duration of my overall treatment.  

Lucky me, my absolute neutrophil count (ANC) was 600 today (see below).  YAY!  It may not be enough to fend off some infections so I have to be extremely cautious about exposures and check my temperature twice daily now.  In addition, I am now slightly anemic (my red cells were affected as well) but my platelets remain normal (although 100 points lower than pre-chemotherapy levels).  

The neutropenia* and anemia may contribute to my fatigue (along with the chemo drugs themselves).  But, it can't stop me from exercising or writing my blog!  It just means that Chris gets his wish....I nap very easily.  My creativity may be impaired as well, since I often doze off in the middle of my documentation, wiping out some of my most creative thoughts.  (Or at least that’s my current excuse.)

* Neutropenia is defined as a low neutrophil count.  Neutrophils and leukocytes together with some other lesser known cell types (monocytes, eosinophils, etc.) comprise one’s total white blood cell count (WBC).  Neutrophils typically respond in acute infections and inflammation and lymphocytes are primarily responsible for creating long-term antibodies and killing targeted antigens or bugs (bacteria and viruses) that your body recognizes as abnormal.  

"Fight the good fight every moment, every minute, every day.  Fight the good fight every moment, make it worth the price we pay...it's the only way." -- Triumph  

If you don't know this song by Triumph, listen to it on YouTube (https://www.youtube.com/watch?v=QEgpcgO4Hvk) and read the lyrics.  They are very inspirational.

My results:

The WBC dropped from 10.5 on 1/15 (just before chemo) to 3.8 (1 week after chemo) to 1.9 today (2 weeks after chemo and at the start of 2nd infusion).   You can see the hgb (hemoglobin) and hct (hematocrit) dropped to make me anemic.  Lastly, Neut# Auto (Automated neutrophil count) is 0.6K today (or 600), down from 2.8 (1 wk ago) and 7.1 prior to chemo (normal range is 2.0-7.8).

Running my Race #2: Patience

Is it crazy or unusual that I look forward to my infusion tomorrow?  I’m not sure if it’s my desire to eradicate the cancer from my body as quickly as possible or to test my theory about the medications causing my blood pressure to decrease, but I really can’t wait for chemotherapy tomorrow.  Being the scientist, I also yearn for more data points in regards to the effects of the medications on my blood cells. They draw blood before every infusion in order to check my blood counts.  In addition, I’m curious if I will respond any differently this time around than the first time and of course, whether I’ll get the energy boost (i.e. insomnia) from the steroids again. 

Two weeks seems a long time to wait between treatments when I just want to get this over with and return to work.  But, alas, my impatience surfaces once more.  This brings up another similarity to running and race preparation.  You need to be patient in your training and learning.  You have to trust that your training will prepare you for the ultimate, importance race.  In running, being impatient can lead to injuries or setbacks particularly if you push yourself too hard, too fast, too soon.  It can cause a similar impact with cancer.  Pushing oneself or the treatment regimen too hard, too fast, too soon can lead to infection, increased fatigue and worsening side effects.   

Patience is necessary in many aspects.  We must be patient to allow our practice and preparation to strengthen us and carry us mentally toward the finish line and toward obtaining our goals.   While at the same time, we may need to practice patience during a race to avoid kicking too soon and burning out or going out too fast and then not having the energy to finish well.   Those that know me, know that this is one of my biggest struggles.  And boy, did it come back to bite me in the biggest running race of my life -- the state cross-country championships my senior year in high school. 

Although our team won the state championship title in 1984 (the first and only state title for my high school for 30 years), I felt failure because I didn’t possess the patience to follow my game plan.  Surprisingly, this still bothers me today.  Yet the gratitude of having a fantastic group of teammates who rallied behind my lead and overcame the unthinkable odds (as Mead High School was considered unbeatable by the rest of the state), made it all worthwhile in the end.  This is an example of how sometimes God uses our weaknesses to make something greater!

My dad used to say, “Patience is a virtue.”  Not only have I held these words close to my heart, but I have to remind myself daily.  Of course, he also jokingly recited this pseudo-prayer, “God grant me patience and I WANT IT RIGHT NOW!”  (I’m a true believer that God has a sense of humor.)  Nonetheless, I’m sure this is another test that God is putting me through to make be a better, stronger and more PATIENT person. 

Patience is not the ability to wait, but how you act while you are waiting. – Joyce Meyer

No Eat, No Happy

I’m pretty sure that I’m addicted to food and water.  No, it’s not just the innate drive to live and survive.  Much like the alcoholic and their eye opener, I awoke this morning, thinking about that first glass of … water.  Even my Keurig was taunting me by turning on when I came downstairs.  Knowing that I could not eat or drink after 6 am for my 10 am CT-Angio this morning, naturally I awoke early.  Thinking that it was after 6 am, I laid in bed listening to Chris wash dishes and Peter prepare for school.  When I finally drug myself out of bed, I discovered it was only 6:30 am.  Ugh, I could have had that glass of water had I arisen upon my first cognitive thoughts and eyes opening.  Of course, what does one do when they get up so early?  Well, I might as well exercise.  After 4 miles of walking on the treadmill, thinking about water the whole time, my thirst only increased.  Chris didn’t need to remind me (but he did) that exercise is the last thing he would be doing if he were NPO (nothing to eat or drink).   As for me, exercise is the best distraction.  I also read a book while on the treadmill, to produce even greater distraction.   

All right, I can hear you.  Isn’t your appetite supposed to be suppressed and aren’t you supposed to be nauseated while on chemotherapy?  The answer is yes and no.  In my vast experience of 1 infusion, I’ve observed that my appetite is suppressed for about a week and then it roars back voraciously.  The nausea is worse on the first 4-5 days after infusion but then lingers intermittently for about a week, but not enough to inhibit eating.  For the 5 days prior to infusion, my appetite acts like a goat, eating everything in its way.  And with the chemo shrinking the nodes that were strangling my esophagus, eating is easier now as well.  Hopefully, I can keep my activity level high enough to keep my weight from creeping up too high. 

Now, about that CT-angiogram.  It was performed in hopes of determining the cause of my low blood pressure (hypotension).  Yes, you read LOW blood pressure (BP).  After being treated for high blood pressure (typically around 170/110), I have now been off of BP meds for nearly 3 weeks and have been recording BP’s in the 90/60 range.  This has resulted in bouts of lightheadedness and fatigue, particularly with changes in position.  The CT revealed the anatomy of my vessels in relation to my port to be sure that this was not contributing to my hypotension.  Although I don’t have an official report of the CT yet, I was able to review the images and it all appears normal (see below).

Just a note for those who’ve never endured the unique experience of a CT with contrast.  CT contrast gives a very interesting, warming sensation.  As it travels through the veins, it produces a flushing feeling in the face, bitter taste in the mouth and then a warming sensation in the urethral region, as the tech describes it, “Like you have just urinated on yourself.”  It doesn’t actually cause one to urinate, but just makes you feel as if you did.  The scanning takes only about 5-10 minutes after the intravenous injection of the contrast.  And, of course, due to the imaging of the neck, they ask you to, “not swallow” which immediately triggers an urgency to swallow.  If you’re lucky enough to obtain a chest CT they similarly request, “Stop breathing.”   Overall, it’s not a terrible experience, except the ravenous suffering from starvation and thirst (ok, maybe a little exaggerated!)

People who love to eat are always the best people.  - Julia Child 

Bones and vessels are white.  Dark areas represent air-filled spaces such as sinuses, lungs, esophagus (NO, not my brain).   K

A New Normal

Today was a good day.  I don’t know if it was the sunshine or the first outdoor run that I’ve taken in over a month, but I possessed energy (close to my previous level) and was able to get a few things done around the house as well as walk with friends.  Being productive is an important part of feeling some sense of normalcy.  The reality of cancer is that your view of a normal day or normal life, changes drastically.  Not only is your daily schedule modified by appointments, but there is nothing routine, as each day presents itself differently.  There are new physical challenges and one must learn to obtain happiness through small milestones, observations or achievements (such as getting the laundry done, a swept patio, the croaking of a frog, squeaking of a hummingbird, or having a day without dizziness or nausea).  In addition, I’ve learned to be thankful for the small things, like being able to breathe without coughing or just staying well (as an illness could lead to a serious setback in treatment).   

In some ways, I’ve even become a more patient person (not a word usually associated with me).  As the busy-ness of my day is slowed and I juggle less activities, I am less bothered by traffic, being in the slow line at the supermarket or when someone is running late.  This is a positive change from the hectic lifestyle that inhibits one from appreciating the simple things in life.  

Eating can be a challenge.  Previously, I would eat whatever was in sight. Now, after infusion, I have to really think about what foods will taste good since infusions modify my taste buds.   Good or bad, I’m not sure yet, but my taste improves after a week and then I have to control my appetite, before I eat everything in sight to make up for it!  This may change over time, but that’s my current status.   Water has become my favorite drink.  I probably drink 8-10 eight oz. glasses daily, whereas I considered myself lucky to consume 3 glasses daily when I was working.  This has its consequences though.  My sleep gets interrupted at least twice, to urinate (TMI?)  I warned you that I would be open and honest in my blog posts!

Lastly, my running has converted to either walking or jogging (eek – that dreaded word that every runner hates to hear!)  While I may start to venture into running again on my good days (and weather permitting), my pace is too slow for me to genuinely call it running yet.  I’ve been advised by my cardiologist to keep my mileage to half of my previous quantity and the intensity lower.  Being the compliant patient that I am (stop laughing), I will follow doctor’s orders.  Currently, I don’t think I can achieve that level anyway but as my breathing has improved and chest pain dissipated, I do feel ready to let loose again.

What hasn’t changed?  Well, of course, my wit and charm remains! J  I still yearn for exercise, whether it’s just doing stretches while watching a movie or going for a run (when able).  No matter what lies ahead, I like to start my day with a workout and coffee (even if the coffee doesn’t taste well, it still gives me a boost).  We are creatures of habit and sometimes just that one bit of routine (even if it’s only a 10 minute walk on the treadmill), makes me feel good.  For me, I also desire companionship and remain extremely social.  This can sometimes be difficult, as I’m advised to avoid “germ exposure” due to my low white count, but I’ve found solace through walking in the open air with friends (who are not ill) and of course, making conversation in waiting rooms at the doctor’s offices and infusion center.  Chris has also been a loyal companion and our banter (mostly humorous) can be quite entertaining.   In addition, people’s cards and well wishes through Facebook or my blog posts keep my spirits elevated.

If you get the opportunity to stop and reflect for a moment, think about what you would consider a normal day.  Acknowledge the small accomplishments and joys of each day.  If you believe in God or a higher power, thank Him.  Also take the time to thank the people who brighten your days.  Appreciate the person who waves at you, who lets you merge in traffic, who smiles at the grocery store or who calls to see how you’re doing.  Seek the beauty that surrounds you, whether it be the blooming heather, an upbeat song or a humorous TV show.  Every day, we have something to be thankful for and by recognizing these gifts, we, in turn, will live happily.   The happiest people don’t necessarily have the best of everything, they just make the best of everything they have. 

Running my Race: Preparation

You knew eventually that I would formulate the comparison between running and my cancer journey.  After all, I have identified myself as a runner ever since completing my first cross-country season as a freshman in high school.   (Even if I only ran cross-country to get in better shape for basketball!)  Whether you’re a runner, a chess player, a musician or artist, there are four P’s that are necessary for continual, steady improvement:   preparation, practice, patience and perseverance.  These are exactly the same qualities needed to push through a cancer diagnosis, whether you are the patient or a close family member, friend or loved one of an individual with cancer.  And, as with running, it’s always nice to bring friends along to help you! 

Since each of these 4 P’s is important independently, I will break them up into separate blog posts.  Read:  it’s too much homework to do in one day!  Preparation includes thoughtful analysis, input and planning.  As many an athlete will claim about the difference between winners and losers:  the separation’s in the preparation.  The better prepared you are for an event or life changing diagnosis, the better the outcome.

As a runner, one not only has to train regularly but also mentally prepare for every race.  In high school, this meant running the course the day before a race and memorizing every hill, curve or narrowing along the path.  As a team, we would analyze where would be best to pass people, where we needed to be sure we were properly positioned to avoid being slowed by others and where we would have to make our final kick.   In the 1-2 hours prior to a race, I would reach into my inner self and visualize the course in my head and strategize throughout.  If I knew my competition, their individual race strategy (whether they had a fast kick, were a good pacer or liked to put the squeeze on you) would be incorporated into my game plan.  This routine would imprint my race plan and improve my odds of successfully executing my race plan once the starting gun was fired and the legs were in motion. 

How does this relate to cancer?  As I’m early in this process, I’m just learning what I’m going to need for preparation.   As a physician, it started even prior to diagnosis.  When I knew my symptoms weren’t acting like a typical infection (sinus or pneumonia) but having the fevers, chills, sweats and cough, I started doing my research and suspected lymphoma.  So, I did my research to determine what tests needed to be performed if indeed my chest xray showed the lymphadenopathy (lymph node swelling), that I was suspecting.  I arrived prepared to get these done at my first appointment. In the event it showed the appearance of lymphoma, I knew what the next steps were to ascertain the type and then proceed with assessing treatment options. 

Even the mental preparation started long before I made the appointment to get my chest xray and lab work.  After reviewing UPTODATE.com* (while on vacation), I mentally prepared myself for what lay ahead of me.  The testing, the biopsies, the treatment were all on my radar.  What I would have to do for work, who I wanted on my care team, even how, what and when I would be able to tell my family were on my mind…if I was correct in my assessment.  Although I didn’t want to jump the gun, I’ve always wanted to be prepared.   After growing up with boy scouts, marrying an Eagle Scout and now having sons in boy scouts (and 1 who has achieved Eagle), I’ve always lived by their motto:  Be Prepared. 

After the CT confirmed my suspicion for lymphoma and the biopsy revealed the type (Hodgkin’s), I was on my way to preparing for the treatment.  With the help of a colleague who does lymphoma research and a review of UPTODATE.com again and a few other resources, it was clear how Hodgkin’s lymphoma is generally treated.  Then, I could move on to researching the medications involved.  Once I reviewed the medications, I could prepare for the potential risks and side effects and what it may take to alleviate or persevere through these effects. 

But, I didn’t just rely on my research.  Throughout this process, I definitely listened to my care providers.  My oncologist, pharmacist, surgeon, pulmonologist, family doctor and cardiologist have all provided extremely valuable input and the experience to go with it.  They have been excellent resources for the questions that only experience can answer and articles don’t always address.  I continue to prepare each week for my appointments and treatments.  When I have signs or symptoms that I can’t explain or concerns for which I can’t find causes, they are my coaches.  They are the ones that I lean on for finding or giving the answers to my concerns. 

Although I still have a long way in my journey, the preparation will continue.  Even making sure that we pack a lunch on infusion days (so that Chris doesn’t have to buy a Snicker bar and a coke) will be part of the preparation.   Having humorous videos available for the days where I don’t feel like doing much helps me enjoy the day even when I can’t do the things I want to accomplish.   Most importantly, keeping in touch with the people I love, keeps me engaged and mentally prepares me for the rougher days that lay ahead.  Just like a marathon, the early training is fun and easy and I know it will get more and more difficult.  However, I will push through and just like in running, I know that my preparation will pay off and take me to the finish line. 

Before anything else, preparation is the key to success. ~ Alexander Graham Bell

*UPTODATE.com is an excellent resource tool which aggregates studies and journal articles to produce the most up to date, evidence-based information to help diagnose, treat and understand different injuries or disease states.  One may obtain basic information without a subscription but most medical personnel (including myself) maintain a subscription to get the more detailed research and statistics. 

Dizzy Blonde

One of the most challenging, yet intriguing aspects of practicing medicine is trying to solve puzzles.  The puzzles that present in medicine come in many forms including putting the symptoms together to determine the cause or diagnosis, discerning the risk factors and projecting into the future and in my case, trying to discover the cause of a new change in my health.

OK, it may have been a long time since I've been called blonde. Let's just call it a gray-blonde blend.   But, the dizziness is becoming evident.  During my visit to the cardiologist on Wednesday, I reached an all time low...blood pressure that is.  My blood pressure was 98/68 standing (without any blood pressure medications on board).  This is quite a switch from my typical blood pressure of 130's/80's  (while on blood pressure medication) just a few months previous.

The dizziness seemed to start shortly after my first chemotherapy infusion.  While driving to my partnership meeting that evening and even during the meeting itself, I felt something akin to motion sickness.  It would come in waves and could last 10 minutes or up to an hour.  Given the toxicity of the medications used, it didn't surprise me and since I wasn't having any severe side effects, I didn't think a whole lot about it.  As the week progressed and my energy level seemed to improve, my dizzy episodes actually increased rather than decreased.  And after my cardiology appointment revealed the low blood pressure, I started checking my blood pressure when the dizzy episodes occurred and discovered that my blood pressure (BP) was considerably lower than usual.

This morning after showering, I became very dizzy and immediately lowered myself to the floor.  As it didn't dissipate quickly and nausea soon accompanied, I took an ondansetron (anti-nausea medication) to help me get dressed and ready for my oncology lab work and appointment at noon.   At the doctor's office, my BP was once again 94/64 and the dizziness was still present.  We (my oncologist, myself and the cardiologist on-call) racked our brains about the potential cause of this sudden reversal.  My BP was 170/110 when I started BP meds back in 2001.  So, why the sudden  dramatic change?

Initially, I thought it might have something to do with my port*, since the dizziness occurred today shortly after trying to get the remaining glue off of my incision sites for the port.   The cardiologist didn't think this was the issue, so I researched the medications upon returning home.  Both Vincristine and Bleomycin have hypotension (low blood pressure) listed as a potential side effect.  With the Bleomycin, this appears to be in conjunction with an allergic reaction and would likely be associated with other symptoms including fevers, mental confusion (more than my usual, that is) and wheezing.  The Vincristine, however, has BP changes listed as a common reaction and hypotension is listed under the serious reactions.  Therefore, my suspicion lies with the Vincristine, especially since the dizziness also comes with tingling in the fingers/toes (a known neurotoxic response of the medication).

Well, my family found this blog very boring.  So, if I put you to sleep, I apologize (unless you were reading this to help you fall asleep, that is).   Yet science is truly fascinating and the broad variability of responses to disease and medications reveals the immense complexity of the human body.  The inner scientist in me yearns to learn more about how and why these strange things occur.  While annoying, they are more of a provocative nuisance than a misery.

* A port is a reservoir that is placed under the surface of the skin that allows direct access to a major vessel.  In my case, the jugular vein was accessed, in order to allow the medications to get into the blood stream rapidly and without damaging the smaller veins.

With ideas it is like with dizzy heights you climb:  At first they cause you discomfort and you are anxious to get down, distrustful of your own powers; but soon the remoteness of the turmoil of life and the inspiring influence of the altitude calm your blood; your steps get firm and sure and you begin to look – for dizzier heights.  ~ Nikola Tesla

Tastes like Chicken or Not

The weirdest side effect to chemo treatment thus far is the change in my taste buds.  Foods that I used to love, particularly chocolate, just don't taste the same and in fact, sometimes taste outright terrible.  Apparently, the cells on our tongue that are responsible for taste, are quite sensitive to chemotherapeutic drugs (Dacarbazine is the likely culprit in my regimen).   50% of people who undergo chemotherapy experience some change in their taste buds.  For me, salty foods have become easier to eat.  Quite a switch for someone who used to prefer sweets.  On the bright side, my blood pressure is so low now that I can afford the salt and the decrease in sweet cravings should keep my blood sugar in the normal range, despite steroids which can increase blood sugars.

So what do foods taste like?  It's really hard to explain.  I ate a chocolate covered cherry which made the front of my tongue tingle and then felt like I was chewing on thistle (the spiky, annoying weed that's taken over my yard!)  Sometimes my tongue feels tingling or sore and other times it appears normal.  Nonetheless, my stomach keeps my hunger alive, so don't worry, I'm not losing weight!

Oral sores can also be a side effect and seem to come and go for me.  I typically notice them more in the evening, but they aren't quite as severe as canker sores in that they dissipate rather rapidly.

The solution:  WATER!  Water tends to help everything.  Water not only quenches thirst but it decreases nausea, it lowers cravings, washes away any oral pain, and keeps the kidneys flushed of all the toxins.

FYI:  Most humans possess nearly 10,000 taste buds.

Though some may see their shortcomings as the greatest evil from the pit of hell, while some throw invectives at God for bringing them into a cruel problematic world…their invectives are just a waste of time, and the world is the most sweetest to those with functional taste buds.  

~ Michael Bassey Johnson

Fatigue Settles In

Without a schedule, it's hard to know exactly when to arise in the morning.  For once in my adult life, I decided to let my body tell me.  So, I got up, walked on the treadmill for a bit, showered and got ready, just like most days.  Only, by the time this was done, it was after 11 am.  Wow.

I grabbed myself some food, took my glutamine and B6 and then set off to the store to get a few things (including Kleenex, since I've exhausted much of our Costco supply over the past  month). With Peter being home, due to the Martin Luther King, Jr. holiday, he elected to be my chauffer (since some of what I needed to buy was for him).

After 1.5 hours and a not so successful shopping trip (we couldn't replace his completely torn ski pants since nobody had anything smaller than a Large size), I was exhausted.  We came back home, grabbed a bite to eat and before I knew it, I had fallen asleep in the recliner.  Obviously, Chris's teaching is working as I slept for over an hour.  Even after awakening, it was hard to get up and going and I still started dozing off again before 10 pm (all this despite being in bed for more than 8 hours the night before).   I still managed to eat dinner--a fabulous salmon stew made by Chef Tom Zierten (one of my high school classmates).  But, I am finding it increasingly difficult to chug down the glutamine powder no matter what I mix it in.  It is so chalky and leaves  my mouth sore.  Tom, being the fantastic cook that he is, gave me other ideas for sources of glutamine in the diet, so we may have to try some of the alternatives.

As far as enlightenment for the day, the only thing I could deduce from today was that it reiterated my decision to remain off of work during treatment.  I'm not sure if I'll remain this fatigued throughout treatment, but for now, I know that if I was working, I could only do it for about 1.5 hours and then it would probably take me the rest of the day to recover.  Right now, I want to focus my life to maximizing my health - physically, emotionally and spiritually.  Unfortunately, my one barricade to this is my guilt.

Maybe it's from growing up Catholic or from my father who grew up in the post-depression era, but working hard to earn your keep, has always been in my blood.  I started working at 10 years of age (on the blueberry farm in the summers) and have worked every summer since.  By the time I was 17, I took a job at Overlake hospital admitting department and from that point, I've worked year around ever since.  My dad was insistent that as long as we were able-bodied, that we contribute to society and live within our means.  He was very frugal and taught all 7 of us kids to live similarly.

Therein lies my dilemma.  The guilt of not working goes in different directions.  I want to be there for my patients, my partners, my community and I don't want to lose touch with my calling, my career.  However, I don't want to compromise my health that would impair my ability to practice in the future either (by having any setback during chemotherapy treatments, such as an illness).  In addition, having 2 kids in college and one not far from applying, the escalating medical expenses, and maintenance of a > 16 year old home, makes balancing the savings, retirement and future a little more challenging.  (Here's where both Chris and my frugal upbringing pays off.)  Hopefully, we can find some compromise in the next few months, where I may be able to provide productive insight into our business/practice through financial or medical analysis (I was a CPA after all) on a schedule that allows me flexibility to work at home, without the added viral or bacterial exposures.  Additionally, I hope to find some interesting continuing medical education (CME) opportunities that I may complete from home, so I may keep up or learn some new skills while out of the office.

Again, I want to re-iterate that these were my thoughts for today.  My goal here is to help people understand the struggles that are going through my brain during my cancer journey.  Not all journeys are the same, but I am sure there are some similarities.  The support that we have received from our neighbors, friends and family is still so overwhelming that it blocks all negativity and each day, I am grateful for this tremendous love and support.

Love never gives up, never loses faith, is always hopeful and endures through every circumstance. ~ 1 Corinthians 13:7

How are you doing?

This has got to be the most frequently asked question and also probably one of the most difficult to answer.  I'm never quite sure if people want me to talk about my physical state or emotional state at this exact point in time or just in general, how are you doing with "coping with cancer?"  Do people really expect that I will go into any detail about my physical being (the side effects that come with chemo) or do I just respond with my usual mantra, "I'm doing all right."?  It's a struggle to determine what to say.

From a mental standpoint, I am doing all right.  In fact, I'd say, I'm doing great.  I anticipate the nausea and physcial symptoms, so when they come, I just modify what I do, what I eat, what and when I take my medications.  While this is a definite change from my pre-cancer routine, it is certainly not distressing.  To have the freedom to modify my schedule daily, is truly a blessing.  Chris has been a wonder, just rolling with the punches--not having any expectations for me and yet not discouraging me from doing the things that I feel like doing.  Having a fantastic neighborhood, family and friendship circle who have rallied to bring us food, prayers, and helping support Peter (who is often left alone as Chris and I attend appointments) has been a Godsend.

From a physical standpoint, I am strong.  I was blessed to be in good shape prior to starting treatment and I intend to do my best to keep my weight stable (by eating right) and do my best to maintain some amount of muscle tone during this process.  I'm not sure if it was premonition, but my Christmas present this year was a treadmill.  This has allowed me to walk, even if it's just in 10-15 minute periods, without having to be too far from a bathroom and home.  As I love to be outdoors, this is quite a change for me (I've always been adamantly opposed to treadmills), but it has allowed me a little more freedom when I'm not feeling so well or if the weather is too rainy, cold or icy.

Don't get me wrong from this post, I truly appreciate people's inquiries on how I am doing.  It lets me know that you are thinking about me and my family and for this I am truly grateful.  But, unless something drastically changes, I will always remain positive.  I am doing all right...I have a God that is guiding me along this path;  I have a wonderful support system, including all my friends, family, neighbors, coworkers and church; I have an excellent care team; and I have a loyal, caring, loving husband who remains by my side throughout it all.

God Bless!

Keep your head up.  God gives his hardest battles to His strongest soldiers. 

Symptoms already improving

Given the pre-medication before chemotherapy, I knew that today should still be a pretty decent day for me.  The pre-medication includes a 48-hour acting anti-nausea medication and a steroid to help with the nausea and swelling from the vicious attacking chemo drugs.  Unfortunately, the steroid gave me insomnia and my mind was going a million miles a minute about all sorts of clever ideas and things that needed to be completed around the house, you name it, I couldn't stop the energy, so at 3:30 in the am, I finally gave up and went downstairs and started writing some, facebooking (because that's always productive) and some reading.  I finally started to doze at 6 am, but had to get going by 8 to pickup my daughter, Kim, for our mother-daughter day to the Starbucks Roastery and lunch.

Despite my 2 hours of sleep, I awoke from my stupor and picked up my neuropathy-prevention supplements on my way to picking up Kim for our date.  Vitamin B6 and glutamine show some evidence of decreasing the risk of neuropathy (numbness, tingling, and nerve pain primarily in the hands/feet) from the Vinbla
stine.  So, I stopped at Super Supplements in Kenmore on my way to the University District and got these supplements.  Unfortunately, the dosing of glutamine is 6 times the usual dosing so the containers only held 12-20 days worth of powder, so I will reach out to Amazon to determine if they have a larger quantity (or Costco may have it).

So, how did my day go?  Surprisingly, I felt pretty decent after getting some coffee in me from the Roastery, so since the weather cleared, Kim and I decided to walk around Greenlake and look at our old home nearby before getting some lunch.  What I noticed most was that my breathing was a lot easier and I was coughing about 50% less than I did when I walked 3 miles with a friend earlier in the week.  It was truly amazing to me that within 24 hours, I could see that much improvement.  But, the pharmacist had told me that they can usually see visible lymph node decreases (in people who have more superficial lymph node swelling) within a few days of starting treatment.  In addition, my heart rate, which used to be in the 40's -50's had crept into the 70's-80's over the past couple months and today is back down to 53, so I think my heart is feeling relief as well.  This positive response was exactly what I was hoping to appreciate and provides hope that I may be able to increase my walking pace to a jog and possibly a run (albeit a short one) within a week or 2.  I will definitely heed the advice of my oncologist and cardiologist to be sure that I don't risk increasing toxicity to my heart, kidneys or liver by increasing my physical activity, but running almost always makes me feel better and I'm looking forward to increasing my strength to fight these bad cells!

Tomorrow is supposed to be the peak of my "bad symptoms" and then my blood counts will continue to drop as the week progresses - usually peaking about 10-14 days after the chemo treatment.  This means that I will need to be more cautious to avoid sick contacts and my fatigue levels may rise.  But, we'll pass that bridge when we get there.  For now, we'll praise God for the early response and relief and I want to thank all of you who are praying and sending all the positive thoughts.

To get through the hardest journey we need to take only one step at a time, but we must keep on stepping.  ~ Chinese Proverb

Here is Kim (my wonderful infusion RN from SCCA) administering doxorubicin (aka Adriamycin) to me.  It's beautiful red color can cause urine to turn red or orange but I think I was so well hydrated that I never saw this after my first infusion.

Chemotherapy Begins - Cycle 1 Day 1

My day started with a 9 am appointment with my oncologist, Carol.  We reviewed the basics of the nodular sclerosing, Classical Hodgkin's Lymphoma diagnosis and the usual treatment which consists of 4 drugs with the acronym, ABVD (Adriamycin, Bleomycin, Vincristine, Dacarbazine).  In all my reading, consultations with colleagues in the field, etc - this appears to be standard of care.  And although last month, there was a trial that I could have enrolled in trying a newer medication in the regimen, with slightly less side effects, this study was no longer available.  Both Virginia Mason and Seattle Cancer Care Alliance (SCCA) were participating in the trial but it ended shortly after the first of the year.  However, I wouldn't know if I was randomized to the new regimen or the usual ABVD and so this just made the decision easier - I'd go with the standard regimen.

I'll outline the diagnosis, implications in a different blog post but for now, I'll explain the rest of my day.  After meeting with Carol, who is an amazing, energizer bunny with the compassion of a saint, I met with the SCCA pharmacist, Paul.  Paul reviewed in great detail the potential for horrifying side effects of these 4 toxic medications, some of which can cause heart or lung damage or neurological changes (numbness, tingling or pain) in my hands and feet that may be irreversible or take years to reverse.  Then we reviewed the commonly known side effects of fatigue, nausea, weight loss and of course, destruction of my rapidly reproducing cells (cancer or non-cancerous cells) which include primarily my hair and blood cells.  So, yes, I will need to learn new head gear fashion.  I'm planning on using ideas from Pinterest to help me on style and learn how to use scarfs, etc to look fashionable.  As most of my friends know, however, I've always been about comfort and not so much look, so you'll probably see me find out what is easiest and most comfortable and wear that nearly every day. Fortunately, as my treatment will mostly be in the winter months, there will probably be something on my head nearly daily (except when those hot flashes occur.)  The best news that Paul shared was that my symptoms from these rapidly progressive lymph tumors in my chest (primarily my cough and gagging/vomiting), would significantly/noticeably improve within a week of the chemo as these agents are very fast acting.

After all of this was reviewed, Carol asked if I wanted to get started on Monday and I said, "Certainly, I would get started today if I could."  So, being the angel that she is, Carol called to the infusion center and spoke with Paul and asked if we could get started today, and they all gave the green light.   30-45 minutes later, they were accessing my port, drawing labs and hooking me up with the good stuff (I'll post more about that experience tomorrow).  The whole infusion process took a little over 4 hours, making for a long day (6.5 hours from when we started).  So, of course, Chris and I did our usual -- nap during it!  (He still does a better job than I, but I am learning this art from the master himself.)  They supply plenty of snacks, which came in handy since we didn't go prepared with lunch or anything.  Thus, my lunch consisted of pita chips with hummus, a cheese wedge, strawberry nutrigrain bar and seltzer water.  Since they don't feed spouses or companions, Chris purchased a coke and snickers bar (see picture below) at the gift shop, while waiting for one of my prescriptions, and I gave him the cashews that I had grabbed as I was already full after eating the other foods.

I'll end today's blog with a quote out of the handy notebook that they give to new cancer patients at the beginning of their journey, because I feel it sums up why I created this blog about my Cancer journey:  "The road of life twists and turns and no two directions are ever the same.  Yet our lessons come from the journey, not the destination." - Don Williams, Jr.

 

Classic Hodgkin's Lymphoma

As I was walking back from the mailbox this afternoon, I received the call that my pathology results have been finalized and it revealed:  Classic Hodgkin's Lymphoma.  In case you didn't hear or read already, this has a very high cure rate and is very treatable.  So, it was a relief to hear this news.

They attempted to recruit me for a clinical trial at Virginia Mason.  The trial would substitute the bleomycin in the usual ABVD treatment with brentuximab.  The advantage of brentuximab is that it doesn't carry the risk of pulmonary fibrosis (lung scarring) as the bleomycin does and they thought this could be a huge advantage for me given that I am a runner.  Well, as exciting as that sounded, I would not know which arm of the treatment I would be randomized to (I may receive bleomycin anyway) and I really don't want to fight Seattle traffic every 2 weeks for infusions (as they only perform them at Seattle or Federal Way).  So, I will stick with my colleagues at Evergreen and the SCCA (Seattle Cancer Care Alliance).

Tomorrow, I will discuss with my oncologist whether this same trial may be occurring in the SCCA system as well.  I have a 9 am appointment with my oncologist to discuss diagnosis, implications, treatment, prognosis, etc and then a 10 am appointment with the pharmacist to review the 4 cytotoxic drugs that will be part of my chemotherapy treatment.  (Although I have already read up on this information, I want to understand the whole patient experience.)

Victory doesn’t come from a cancer-free diagnosis, but on how you choose to live your life while you have this disease.  That is why you have to strive to be happy.  – Jose R. Arevalo, Non-Hodgkin’s Lymphoma Survivor

Vision changes

Yes, it's a catchy title, but to clear the water right off the bat, I'm not talking about my eyes.  They are fine!  Since I don't have anything new to report on my health status today, I thought I'd reflect on my mental status and how a cancer diagnosis has changed my vision of life and the world.

Most of you know that I am a firm believer that God is in control of my life and the lives of others, that He uses each of us as a vessel to carry out His grand plan.  This being said, I have not really experienced any anger or frustration over my illness.  I know that He has his reasons and I know that there will be more good that comes out of this than bad.  If I'm angry at anything, it's my stubbornness of not getting seen back in November when I first really started noticing symptoms.  Whether that would have made any difference or not is yet to be seen, so I can't perseverate on that decision.  Again, I think that God had his reasons for keeping me in doubt that there was anything wrong with me at all.

I'd like to say that I've always seen my family, faith and health as priorities in my life, but my time commitment to my work definitely would contradict this reality.  Prior to my diagnosis, it was common practice for me to get up and run before work, see patients all day and work through lunch, come home between 7-8 pm, grab a quick dinner and then work until I couldn't see straight any more.  My "days off" were always spent catching up on charts, correspondence, emails, meetings, reviewing patient results, filling out patient forms, making phone calls, etc. There was not a day (unless I took vacation) that I didn't log into our electronic medical record system to take care of patients or complete some paperwork.  Well, this came to an abrupt halt on January 5th, my last day of seeing patients in the clinic.

Do I miss it?  Yes and No.  I miss my patients, staff and colleagues immensely.  The camaraderie and support system at Lakeshore Clinic is like family.  It was/is my home away from home.  The type of relationship we have as a group is one of a kind and hard to find.  The extended Bothell and outlying community also is very special.  People are very supportive, caring and loyal.  However, I don't miss the late nights, chronic fatigue (although this has been replaced with a different type of fatigue), the computer dilemmas, missed family events, etc.  This is what I am hoping to replace and change before I return to work after the end of this journey.

How has my vision changed?  Not surprisingly, I have a greater appreciation of all my friends and family who have truly reached out after this shocking news.  I think the most commonly reported sentiment (which passed through my mind as well) remains, "How did this happen to you?  You are the healthiest person I know?"  First of all, cancer knows no limits. Although I don't have any family history of cancer and am the youngest of 7 kids, we need to remind ourselves that there is more that we don't know in medicine than that we do know.  One might wonder if the stress and strain on my body that I produced from working the sheer number of hours that I was working contributed or my exposures to unknown viruses, etc.  Once again, we need to remind ourselves, that it is not for me to know the cause of my cancer at this time, it is all part of God's great plan.  My overall cardiac and lung strength from all my running is likely going to aid me during the treatment process and the decrease in physical stress has already brought my blood pressure back to normal without any further need for anti-hypertensive medication.

Every day is truly a blessing.  While I thought this before my diagnosis, I certainly have solidified it now.  There are few things that frustrate me any more (Seattle traffic may be one of them though!)  Being able to breathe without coughing and eat without vomiting, are things I took for granted, but now I appreciate the fact that there are medications that can help me with these simple things.  Although I enjoyed everything outdoors previously, such as running, walking, hiking, I've learned new ways of challenging myself even when I can't get out.  I no longer run by myself but will call up a friend to walk with me.  Although I may cough throughout the walk, I am so appreciative to have someone to laugh with and share stories rather than just listening to my same old song list every day.

Yes, life has changed.  But, it brings new opportunities to see the beauty around me differently, with a different shade of glasses. While I hope that you don't have to be diagnosed with cancer to change the shades of your glasses, I challenge you to look at things differently and try to remain positive even when adversity hits.  If you back your car into another vehicle, be thankful it was a car and not a human being.  Laugh at yourself, be happy for the happiness and success of others.   All in all, it makes for a much happier state of being!

We all have bad days, but one thing is true; no cloud is so dark that the sun can’t shine through.  – Miranda Kerr

NAP Time

Sleep is overrated.  Napping is where it's at.  

No, Chris did not take over my blog site.  I've just discovered that it is often easier for me to sleep in a chair or recliner where gravity is working with me.  Over the past 3-4 weeks, as I lay down to sleep, I start getting into severe coughing jags.  It will cause me to gag, but there's nothing to come up except clear phlegm.   My theory behind why the coughing and gagging are worse when I lay down is that when I'm upright and I cough, gravity will work at keeping the phlegm in the esophagus to clear and peristalsis (the rhythmic contractions that the esophagus uses to push food into the stomach) will work from there.  However, when I am laying flat, the mass compresses more on my bronchioles and esophagus causing more irritation and therefore increases coughing/phlegm but now, my esophagus doesn't have gravity and is blocked by the large mass, that it causes me to gag it out.  Because there is obstruction of the esophagus, the stomach contents never come up, so there is no complete vomiting.
OK, I hope that description didn't leave any one queezy.  I'm always making assumptions that people want to know as much detail as I do, yet I know (from my 2 oldest kids) that this is not always true!

After a 2 hour test of patience through Seattle traffic, we arrived at Virginia Mason at 9:30 this morning.  Everything looks good as far as my healing from surgery and my port placement, but unfortunately, the pathology reports are still pending.  Apparently the pathology does not appear as straightforward as the frozen section implied and so they have sent out the specimens to more physicians to get further opinions on what I am dealing with and what treatment should be performed.  What does this mean?  Well, I will have to wait until next week to get any treatment started and in the meantime, I will continue to take medications to suppress the "scary" cough that makes everyone think that I am going to give them pneumonia or tuberculosis.

This afternoon, I visualized the inside of my heart via echocardiogram.  It was fascinating to watch but they wouldn't let Chris take any pictures so I can't share that with you.  It's basically a glorified ultrasound of the heart that looks at the valves, chambers and blood flow.  We were able to obtain a CD later and I'm happy to report that my heart is relatively normal.  Chris enjoyed watching in his usual manner with his eyes closed and occasional snoring.

After returning home, I took my opportunity to make up for last night's poor sleep and dozed for a few hours.  I'm still not fond of the groggy feeling when awakening from naps during the day time.

Tomorrow (Thursday) is our first non-holiday, weekday since December 30th, that we have not had at least one doctor's appointment or test.  While it seems like I should be thankful for the "day off", we're just eager to get things moving and get healing and feeling better.  This is my opportunity to practice patience!

God Bless.

I'm so good at sleep, I can do it with my eyes closed.  -- unknown author, but likely Chris Platz has said this a time or two.

Pulmonary Function Testing (PFTs)

Not too much excitement today.  I'm still awakening about 3 am with drenching sweats and cough, but managed to go for a walk with a friend in the rain before my afternoon appointments.

Today I underwent baseline testing of my lung function before getting started on any chemotherapy treatment.  We spent an hour at the pulmonary center at Evergreen where they put me through a battery of tests to see how much lung capacity I have, how much obstruction I'm experiencing and if anything can be improved by a little albuterol (or as the pulmonologists call it, "all better now").  The first test (spirometry), you have to take in as deep a breath as you can and blow until you absolutely have no air left (a lot longer than you think).  You repeat this 3 times to be sure that it's reproducible (and consistent).  The second test, they have you take in a deep breath, breathe it all out gradually and then start puffing little breaths for about 10 in a row.  Then, they close off the air and you continue to puff like that for about 10 seconds (a lot harder than it seems).   Fortunately, I only had to repeat that test twice.  It was done to assess my diaphragm function and strength and see if symmetrical.  Lastly, they did a test where you took in a deep breath and then had to hold it for 10 seconds and repeat it 3 times.  This test checked for the exchange of oxygen and carbon monoxide across my lungs and into my blood stream.    

Once again, good news abounds.  The  tests revealed that all my years of running have paid off and my vital capacity is above average.  It also showed that the obstruction that I'm experiencing is visible on the testing but not materially impacting my ability to oxygenate.  Interestingly, the albuterol helped me only a little with the obstruction from the mass, which is what I expected as I had already been utilizing albuterol earlier in the course of feeling "sick" and didn't notice improvement.

We were supposed to meet with the oncologist after the PFTs, but just before my 4 pm appointment time, I received a call from her that she was unable to get the pathology reports from Virginia Mason (they hadn't quite finalized them).  They were very reluctant to give her any information over the phone and since we can't really move forward until we definitively know what we are treating, we will have to delay treatment a little longer.   Since I have an appointment at Virginia Mason tomorrow morning at 8 am, I intend on returning with those pathology reports at that time.  So, I hope to give y'all more information tomorrow.  It is possible that some of the special tests may take a little longer, especially with the recent holidays.  Nonetheless, I will obtain my baseline cardiac function testing tomorrow afternoon (through an echocardiogram) at Evergreen Cardiology.  I'm hopeful this will look as good as my pulmonary function today.

Once again, Chris, Peter and I were blessed by a wonderful neighbor, Yvette Billbe, for bringing us delicious meals for the past 2 nights, as we have had late and long appointments which has made life a lot easier. We've also been blessed with visits, well wishes and calls from friends and family which is quite touching and we can't express our appreciation enough for all the love and prayers.  You ALL have been so amazing.   THANK YOU THANK YOU THANK YOU!

Never believe that a few caring people can’t change the world.  For, indeed, that’s all who ever have.  – Margaret Mead

PET Scan Day

Today was officially deemed PET scan day.  After 40 hours of no carbohydrates and then 6 hours this morning of nothing but water, I arrived at Radia in Kirkland for my PET scan.  What's a PET scan?  It's an exotic (and very expensive) CT scan in which they use radioactive contrast to help highlight the metabolically active areas in the body (those with the most rapidly reproducing cells).  What is the purpose of getting it?  It is performed to identify the extent of lymphoma spread throughout my body.  Of primary interest are the bones and bone marrow because we already new that I had significantly enlarged lymph nodes in my chest and abdomen.  Invasion of the bone and bone marrow would put me at a stage 4 lymphoma rather than 3B (which is where I currently stand).

After our arrival at Radia, they handed me a 16 oz plastic bottle of room temperature white liquid to drink--Barium.  I had to guzzle this grape-flavored, chalky liquid in order to distinguish my bowel from other structures when they perform the CT.  It really wasn't as bad as I make it sound, but I wasn't forewarned about it, so it caught me by surprise.  Nonetheless, I finished it within 15 minutes and then we were escorted back to a closet-sized room that was about 78 degrees.  It felt nice and cozy but put Chris to sleep within 10 minutes.  The CT tech then placed an IV, checked my blood sugar (which we bet on the result -- I said 78, the tech said 82 and the result was 83).   I forgot that the barium likely had sugar in it, so I blame that for not knowing my sugar result.  ;)  After he returned with the sugar result, he pulled out the metal-encased radioactive syringe and injected into my IV.  I don't know what I expected, but I didn't notice anything after the contrast was injected - no unusual taste in my mouth, no burning, no flushing.  It felt the same as saline.

We waited for an hour before the scanning could be done and when the tech walked in at 1:30, he awakened Chris from his much-needed snooze.  He went to the main waiting room with the nice fire place and big screen showing soaring over the U.S. while I went onto a flat bed where they covered me with warmed blankets and strapped me in (so I wouldn't run away, I guess).  All I could think about while being pulled in and out of the big tube was MOD pizza.  After no carbohydrates, that was the thing I craved most.  I was only in the scanner for 23 minutes and then we were able to leave.

I must admit that since I didn't get a call from the radiologist (as I was told I would), I peaked at my results this evening.  From what I can tell, I have reactive bone marrow, but it doesn't look like the lymphoma has actually invaded the bones or bone marrow, just the places that we were already aware of it's activity.  So, it looks like this will put me at stage 3B and I'll probably start the conventional ABVD chemotherapy protocol this week and then recheck the PET scan after 2 cycles of chemo to be sure that I am responding appropriately.  I will likely have more information tomorrow after more of the pathology reports from my surgery return and with my discussion with my oncologist at 4 pm.

Keep the prayers a coming as they are definitely making a difference!!!

Believe in the power of prayer.  If not for yourself, believe in it for others.  The world is weak, prayer is powerful and He can do anything.  

Initial History and Symptoms.

When did you first know that you had lymphoma and what were your symptoms? 

At the beginning of November, I started experiencing low grade fever and chills with a mild non-productive cough.  I was struggling to run, but I was still trying to recover from plantar fasciitis that I somewhat attributed it to just being "out of shape".  I seemed to be deteriorating rather quickly though (couldn't do an under 8 minute mile without feeling short of breath or heart pounding).  I had no URI (upper respiratory infection) symptoms or any other signs of infection (I even checked my urine to be sure it wasn't a low grade UTI (urinary tract infection).  Just when I was about to pursue further workup of the fevers, I started feeling better.  But, this recurred about a month later (around 12/17) with the fever/chills/extreme fatigue and nonproductive cough.  I even fell asleep during a comedy act that we attended on our anniversary on 12/18 (and it was only 8:30 pm).  When it didn't resolve by Christmas, I knew something was wrong.  I had one of my partners call in an antibiotic for possible pneumonia, before we left town on Sunday for the Lake Wenatchee cabin.  After 3 days of antibiotics, incessant drenching night sweats, I suspected it could be lymphoma.  I did my reading on UPTODATE.com and realized I needed a chest xray and some labs (including LDH and CBC), so I made an appointment with Dr. Esser for the day after we return from the cabin (12/31).  She luckily volunteered to squeeze me in early enough such that I could get a CT-chest done that same day (once we saw the grossly enlarged mediastinal (middle chest) lymph nodes.

After getting the confirmatory CT-chest that showed lymphoma involvement into the chest and abdomen, it was a matter of determining the type of lymphoma from there.  I was setup to see Dr. Liddy Klaff, pulmonologist on Monday (1/4) for a possible bronchoscopic ultrasound guided biopsy (aspiration primarily), but after discussing my case with Dr. Carol VanHaelst, it was agreed that a larger biopsy with more tissue would be better and this could be accomplished by a surgical biopsy called a mediastinoscopy.  The mediastinoscopy entailed an incision at the base of the neck anteriorly and then her would remove lymph nodes that were easily accessible.  According to Chris (my husband), he ran into some large nodes right after getting into the mediastinum and took these out as well as taking a large chunk out of the largest lymph node that was obstructing some of my bronchi and constricting my pulmonary artery (which explained why I was short of breath and heart pounding whenever I tried to run).

They do a lot of testing off the tissue they remove during surgery but one of them is a frozen section that the pathologist can look at immediately to give a preliminary diagnosis based on architecture of the tissue.  In this case, they felt it looked consistent with Hodgkin Lymphoma.  Since Hodgkins is not only treatable, but also curable, everyone seemed to be excited about this diagnosis.

"I'm not afraid of storms, for I'm learning to sail my ship." -- Louisa May Alcott

Blog Purpose & Intent

Since being diagnosed with lymphoma about a week ago, some people asked me if I could blog my experience.  After careful consideration, I thought, you know this could be fun.  It will both satisfy my love of writing but also inform people about the process.  And yes, if it can help someone along the way, that would make it even more worthwhile.

I've always said that, "God has his reasons."  There is always a purpose, for which we may never understand while here on earth, for every bump in the road, person we meet, journey we take.  This cancer journey of which I am embarking, will serve a purpose and in all actuality, knowing that my life is in God's hands, makes the whole process less anxiety provoking.

Although I am jumping into this blogging 1 week after initial diagnosis, I will start with my experience at the beginning....symptoms I was experiencing, early reports, etc.  So, sit back, relax and enjoy the ride with me.

"To get through the hardest journey we need to take only one step at a time, but we must keep on stepping."  -- Chinese Proverb