Stepping Into My Future!

At the time of this post, I have been treatment free for a little over five months. It is strange how much my weeks have changed. No more planning for every other weekend to be spent recovering. No more prepping my port for the infusions. No more calls on my way home from the oncologists office to my parents to let them know I had made it through another one and was headed home to crash on the couch.

Friday, April 12, 2019 – Annual checkup with Dr. M, my radiation oncologist. After he listened to my lungs and examined me for any residual affects from the radiation treatments, he pulled up my last scan and said I looked great! Other than what they call, “ground glass nodules” in my lung that are common with radiation treatments (and may or may not go away), he told me that he is treating me as if my cancer is cured and that I do not need to come back to him unless any other issues arise, i.e. it comes back. I shook his hand, thanked him for everything and said, “hope to see you never”, to which he chuckled and said, “same to you”.

Friday, May 17, 2019 – Our grandson, Oliver Thomas Coonrod, made his grand entrance into the world! A beautiful bundle of joy! Brian, Ben and I made the trip out to Kansas to welcome him and to rejoice in the blessing with his daddy, mommy, his other grandparents and great-grandparents. It is truly amazing how much love one is able to give. My heart is so full!

Tuesday, May 28, 2019 – Met with Dr. H for a checkup and to have my port flushed. We talked about the swelling in my hands and feet continuing to bother me, and it is especially noticeable when I pick up my grandson. He told me to continue taking Aleve, as I have been since the infusions started, and that it may take time before the swelling goes down. Other than that everything else looks good. We scheduled my next CT Scan for the end of August. I would need to come back prior to that for a port flush.

Monday, June 24, 2019 – Had to make the gut wrenching decision to help our last remaining fur-baby, Daisy Duke, cross over the rainbow bridge. Two lost in four months and I was beyond devastated. I cried for weeks. In my whole life, I had never not had a dog or two in the house. Daisy was my cancer dog. She was the one who snuggled with me on the couch, on the bed, on the floor when I was sick and going through treatments. She was the only one I told all of my darkest fears to. The only one who knew how I truly felt every day. When Brian was at work and Ben was at school, it was just her and me. Now, with traveling so much between home and Kansas to see Oliver and our kids, it is not practical to bring another puppy/dog into our lives right now.

Tuesday, July 9, 2019 – My BFF, Jan and I went to Woodland Lakes to visit my aunt and uncle for a couple of days. On our first night there, a little black kitten, with a bad scar in the shape of a crescent on his side, walked up to me out of the darkness and claimed my heart in an instant. I named him Eclipse, knowing full well that Brian would never let me bring a cat home. He has never liked them and never will. My aunt is a confirmed crazy cat lady, and she has several, but there was no way she could keep another male as it would eventually fight with the one she has. She did feed him and give him water though, which pretty much guaranteed that he would stick around. And he did, for the whole time Jan and I were there…and until I talked Brian into letting me give this little guy a chance to heal and be loved. It didn’t take much, because I was still so down and depressed over losing Daisy, Brian agreed we could try it. We were heading out to Kansas the very next weekend for a visit and we stopped by my aunt’s place on our way back to bring Eclipse home with us. Though Brian wouldn’t admit it at the time, Eclipse stole his heart too. So much so, that the next weekend, the kids came with Oliver for their first visit since his birth and they brought a little sister for Eclipse. I named her Luna and she has become Brian’s cat, for sure. Again, never say never!

Friday, July 26, 2019 – Went in for a port flush. It was nice to just walk in and walk out within 10 minutes, but I wasn’t prepared for how I would feel seeing other patients sitting in the infusion room getting their treatments. A rush of sadness washed over me and, though I smiled and said hello to everyone, I know it was just as hard for them to see me come in and leave so quickly because I remember seeing people do the same thing while I was doing my time in the chair. Brave souls, each and everyone of them.

Tuesday, August 27, 2019 – Scanxiety! CT Scan and then straight to Dr. H’s office for the results. It never gets easier sitting in that examining room waiting for him to walk through the door. The scan still shows scar tissue that is very slowly dissipating, but the words STILL CANCER FREE definitely overshadowed everything else! I am scheduled for an x-ray and followup appointment with Dr. H in late October. If that is clean, I have decided to have my port removed. It is totally my decision and until this appointment, I kept saying, “it’s not like I can just open a zipper and put it back in if I need it”. Well, I decided to change my thinking to, “I will not need it again, so let’s just take it out”. Take that Cancer! You suck and I’m done with you forever! (So please be done with me…)

 

Heard this song on the radio as we were leaving Dr. H’s office and thought that this particular verse, the “she” could be changed to “I”.

“She’s got a smile it seems to me
Reminds me of childhood memories
Where everything
Was as fresh as the bright blue sky
Now and then when I see her face
She takes me away to that special place
And if I’d stare too long
I’d probably break down and cry”

Where do I go now? What do I do? How do I live with yet another new normal?

There are several books on how to pickup and go on after the big “C”, and I am beginning to think I need to spend some time in the library.

Still always scared that it will come back and finding it hard to plan for the future.

Working on closing this chapter of my story and beginning to focus on writing the next one!

Peace and Love to All!

Kathy (with a “K”)

 

 

There’s a Light…

"In the velvet darkness
 of the blackest night
 burning bright

 there's a guiding star
 no matter what or who you are...
  There's a light

      in the darkness
          of everybody's life"
                               Richard O'Brien
                               Rocky Horror Picture Show

… and if you sang that instead of just reading it, you will appreciate how much of a “Time Warp” this whole experience has been for me … 

Sprinting towards the finish line

My husband surprised me with a wonderful gift for Christmas – a 90 minute massage! I decided to use it before my next infusion and scheduled the appointment for Wednesday, January 23. Upon my arrival, I had to fill out some forms, which included a health history. When it got to the question, “have you ever had cancer?”, I habitually checked no…and then reality punched me in the gut and I sat there and had a small panic attack/pity party as I scratched out the “no” and slowly checked the “yes” box.  I was thankful that the little waiting area was dimly lit, so no one could see my tears. As the masseuse came to introduce herself and show me to her room, she glanced over my forms and asked if there were any signs of cancer on my latest scan. I told her no, but asked why that information was needed.  She explained that a massage can release toxins from the muscles and actually cause any current cancer cells to enlarge or multiply – yikes!  I was a little hesitant to continue, but alas I reminded myself and informed her that the only thing the last several scans had shown was scar tissue. I smiled, took a deep breath and let all stress and tension be released from my body for the next hour and a half.

Thursday, January 24, 2019 – Imfinzi #21.  Dr. H and I went over my latest x-ray, which  showed the scar tissue was actually starting to dissipate.  My blood levels looked good, so I got comfortable for the next hour and did a word search puzzle as the infusion dripped through my IV.  While I was checking out with the secretary, I could already feel myself spiraling down toward a weekend on the couch, which is exactly what happened.

Saturday, February 2, 2019 – We celebrated my birthday with dinner out,  surrounded by a few friends. So different from my birthday last year, and hard to believe another year has scooted right on by.

Thursday, February 7, 2019 – Imfinzi #22 – For the second time since this all started, the nurse had a difficult time accessing my port, meaning it took several attempts to pull blood from it and she had to flush it numerous times before it would work.  It doesn’t hurt when they flush it, it just causes a little bit of panic on my part, because my brain starts playing the “what if” game. Once it was working, the infusion went well and I was out of there in less than 90 minutes.  I made it home just in time to lay down, as this one made me more nauseous than I had been in a while.

Thursday, February 21, 2019 – Imfinzi #23 – Met with Dr. H to schedule a PET Scan.  My blood work was in the normal range and the infusion went off without any trouble from my port.  I went home and had my usual bowl of soup and closed my eyes to rest, as the exhaustion that always accompanies me afterwards came to take over. My husband was out of town on a week-long business trip to Italy and, since it was an infusion week, my oldest son came home that afternoon and stayed until Sunday.  Unfortunately, or fortunately, I guess (everything happens for a reason) he was here when our beautiful pup broke her leg Friday evening.  We rushed her to the animal emergency hospital where it was determined that her age, and the condition of her poor body showing signs of cancer, which, more than likely, had caused the break when she fell in the back yard.  My husband wouldn’t be home from his trip until late the next night, so it was decided that she be put on some heavy pain meds until he got home and could say his goodbyes.  As heart wrenching as it was, it was even harder to watch my boys lose their childhood pet. I am so grateful that the four of us were together to love her and help her cross over the Rainbow Bridge.

Thursday, March 7, 2019 – Imfinzi #24 – Since the weekend, I had a feeling of heaviness and tightness in my chest. It hurt to breath deeply – not like a sharp pain, but like an ache.  I informed the nurse as soon as she checked my blood and hooked me up to the IV.  She said it could be from the back and forth weather we had been experiencing, and advised me to start using my Albuterol inhaler regularly for a few days to see if that would help. The recovery from this infusion took over a week, as I just didn’t feel very good at all.  This made it rough to get things in order for my son and daughter-in-law’s baby shower that was coming up fast.

Saturday, March 16, 2019 – We hosted a baby shower to help welcome our grandson, who is due to arrive at the end of May.  It was the first day since my latest infusion that I felt half way like myself.  We had a great time with family and friends and it was so nice to be focused on my next big adventure, instead of the one that will soon be over.

Thursday, March 21, 2019 – Imfinzi #25 – Once again, my port was acting up and it took some time and flushing before the infusion was started.  While I was being hooked up, the nurse told me that my insurance had denied the PET Scan that was scheduled for the following week and that they were putting in an order for a CT Scan with contrast, from my neck to my knees, instead.  Don’t get me wrong – I am very grateful for our insurance company, as they have paid for roughly 95% off every treatment, test, hospitalization, and surgery I have had.  A PET Scan would show, almost without a doubt, if there was any signs of cancer in my body, and I very much want (need) that clarification.  The reason the insurance company gave for denying it was that I didn’t have a recent scan that showed any signs of a tumor (for that I am elated) and they couldn’t justify needing a Pet Scan.  As I was getting ready to go home, the secretary smiled and said, “only one more”, and that brightened the dark feelings I was having over the Pet Scan issue.  Her words also gave me the idea for the theme of this post.

Wednesday, March 27, 2019 – The full body CT Scan was also denied by the insurance company (for the same reason the Pet Scan was denied), so I just had the usual CT Scan (with contrast) of my chest.  The dye that is injected via IV doesn’t normally bother me, beyond the day of the test, but this time I felt the effects for several days. Nausea, swimming feeling in my head, no energy. Just plain blah.  I don’t know if it was the scan or the infusions, but I felt horrible on the trip to and from my son and daughter-in-law’s house that weekend for the second baby shower.  Thankfully, I only felt bad while in the car and not the whole time we were there.

Thursday, April 4, 2019 – Imfinzi #26 – FINAL INFUSION – DONE – FINE – FINISHED – HOORAH – HOORAY!  Brian took the day off and we saw Dr. H to get the results of my last scan.  No signs of cancer!  The scar tissue continues to dissipate!  The fluid that was in my left lung on the previous scan is gone!  WAIT…WHAT??? I didn’t even know I had any fluid in my lung.  It was never mentioned.  In all probability, that is why I was feeling the tightness in my chest and the ache/pain when I tried to take a deep breath for several weeks.  Well, at least it is gone!  Dr. H’s office doesn’t have a bell to ring when treatments are done, so I brought my own little “motel front desk type bell” with me and I rang it several times as I was leaving the office, along with the nurses, secretary and, of course, Brian – ding ding ding!!!

Next Steps

LIVE!

Welcome grandson into the world!

Celebrate 30 years of marriage!

Dr. H suggested that I look into becoming a patient advocate, so I put it on my list of things I plan to check out.  So many possibilities and I am so very excited to move forward and figure it all out!

I have an appointment with Dr. M, my radiation doctor, on Friday, April 12, for an annual checkup. 

I have a visit with Dr. H for blood work and to have my port flushed on Tuesday, May 20.  Ports have to be either accessed for IV or flushed every six to eight weeks, as long as you have them, or they can cover over with scar tissue.

I will have a scan in August, and then a visit with Dr. H for the results, blood work and a port flush.  If all looks good at this visit, I will be scheduled for out-patient surgery to have my port removed – woohoo!

For the next three years, I will have a scan every four month, which will then go to every six months for a couple of years and then once a year until he says I don’t need them anymore.

When one door closes – kick another door open!

So, after 6 rounds of chemotherapy, 30 radiation treatments and 26 immunotherapy infusions, all over the course of 18 months, I am cancer free!

A huge thank you to everyone who lifted me up and supported me on this journey with your hope, prayers, visits, cards, gifts, flowers, positive thoughts, and love. My gratitude is beyond measure!

“Where there is great love, there are always miracles.”

“Surviving cancer is not the end of a gruesome story, it is the beginning of a beautiful one.”

I. BEAT. CANCER!

Love and Peace to All!!!

Kat

 

Six of Wands…


Six of Wands is actually a Tarot Card. I had never heard of it until I was trying to come up with a title for this post. I feel that it just fits perfectly. There are many versions of how the person and horse are depicted on the card. The one in this picture is a woman holding a victory star and riding a decorated horse that appears to be flying over a heart surrounded by six daisies (a bit of a theme carried over from my first post). The horse represents strength, purity (Katherine actually means purity – no comments from the peanut gallery) and a successful progression of adventure. The Six of Wands represents reaching an important milestone or achievement of a significant goal, and that one has harnessed their strengths to bring about a happy outcome. While the Six of Wands marks an important milestone, one must keep in mind that they are not quite at the finish line just yet. There is still a ways to go and challenges may sit on the path ahead, but to take heart knowing one has the support of those around them.

Demon Drug – Part 2 (with no plans for a trifecta)

I signed off of my last post after infusion #15 and my doctor prescribing a low-dose prednisone with the hope that it would help my near-constant pain and inflammation. After three days of taking it, I started to notice a little bit of pain relief, but then my brain popped out of my head and looked at me with its beady little eyes and asked, “what made you think it was a good idea to give me that damned “Demon Drug” again?” “You know it makes you want to peel your skin off – think how attractive you with no skin on would be, and it sends your anxiety through the roof – it would get very cold very quickly with a hole in said roof, not to mention the fact that there is now no food in the house – you ate everything in site over the past few days”. So I lovingly placed my brain back inside my head and called Dr. H’s office to have them put me on a stepdown program to get off of the steroid. Once you are put on a steroid, there are health ramifications if you just stop taking it without coming off of it over time. After a few days of feeling like total crap as the prednisone wore off, I once again had a happy brain and food in the house.

The journey continues

Thursday, November 14, 2018 – Imfinzi #16 – For the first time since I have had my porta catheter, the oncology nurse had a difficult time accessing it, meaning that she stuck the needle in, but no blood came out into the vial. She said it happens occasionally, but I was a little freaked out by it, mainly because I have been having what feels like muscle pain/spasms in that area off and on for a few months. Anxiety started to rear its ugly head and shout “what ifs” at me. She told me not to worry and that it was probably caused from the change in the weather, which had been quite cold for a day or two. She wet some thick paper towels and warmed them in the microwave and then had me hold them, applying light pressure, over the port (with the needle already in it – ouch!). After about 10 minutes, she flushed the line with Heparin, which they normally do anyway after they take blood and before they administer the Imfinzi (and it leaves a horrible taste in my mouth every time). It worked and she was able to draw the three vials of blood that they take before each infusion to check my white cell counts, liver and kidney functions. The rest of the treatment went as normal. Anxiety slowly crawled back to its corner and went to sleep, always with one eye open.

Thursday, November 29, 2018 – Imfinzi #17 – I met with Dr. H before my infusion and we discussed how I was doing since coming off of the steroid. I told him the swelling and pain is always there and that Aleve continues to be my daily semi-savior, as it never takes all of it away. We also talked about when I am done with the immunotherapy treatment and what happens if the cancer comes back – can I take the drug again or is it a one and done thing. Since this line of treatment is so new, he didn’t really have a concrete answer. We decided together that it just simply won’t come back at all and I won’t have to worry about it. I’m good with that! He listened to my lungs and said they sounded clear and then he asked me how my breathing was. I told him I could definitely tell a difference in how deep a breath I am able to take due to the scar tissue from the radiation. He again said that it could get worse before it gets better. As I was getting up to go into the infusion room, he looked at me and said, “out of all of my patients, you are the only one I can say this to…” (heart beginning to pound a little) a grin appeared on his face as he threw his arms up and excitedly asked, “did you hear that KISS is coming in September?” OMG – totally freaked me out for a minute. As most of my friends and family know, my husband is a huge KISS fan (also plays Peter Criss in a tribute band) and he and Dr. H have bonded over that fact since my second chemo treatment when Brian wore a KISS shirt, which of course sparked the conversation about their shared interest. I just love Dr. H because, not only is he one hell of an oncologist, but he is also just a regular guy!

Thursday, December 13, 2018 – Imfinzi #18 – I have really been monitoring my diet and have actually lost a tiny bit of weight, but somehow the swelling and joint pain got worse. I chatted with the oncology nurse about it and she said it is just the nature of the beast that is chemo/radiation/immunotherapy. She told me to keep up with my diligence, but to not be discouraged as one of the side effects from all of these meds is weight gain. I remain positive and thankful, because it could always be worse.

Thursday, December 27, 2018 – Imfinzi #19 – Even with the Holidays and my son and his wife in town (which means we tend to eat out at all of the places my son misses) I managed to lose a pound, but feeling more achy and tired than ever – I’m thinking Fat and Sassy will just be who I am until this immunotherapy stuff is done and, hopefully, my body begins to recover from the stress of it all.

Thursday, January 10, 2019 – Imfinzi #20 – Met with Dr. H, and discussed the fact that it is taking longer for me to recover after each infusion and my joint pain and swelling are getting worse, as well. We researched some prescription strength anti-inflammatory meds together in his office. After considering it, I decided to just wait it out until after the treatments. I just really don’t want to add any more to my daily cocktail of pills. He scheduled me for a regular chest x-ray in two weeks and then told me I would be having a full-torso CT Scan with contrast sometime in March. I asked him when I would have a PET Scan and he said that, depending on the results of the CT Scan, I may not need one.

Side Note: A couple of months ago I ran across an organization called Lung Force. They are affiliated with the American Lung Association. Part of what they do is gather information from people who have been diagnosed with lung cancer and share it with doctors and researchers to help assist them in finding new treatments and possibly a cure in the not too distant future. Lung Force is pushing the initiative of a preventative measure called, “Saved by the Scan”, a low dose CT Scan used to detect lung cancer, in the same way an annual mammogram, prostate exam or colonoscopy are standard screening tools. I signed up with them and shared my story with their team in the hopes that it will help others, much like my reason for writing this blog. Did you know that every five minutes, a woman in the United States is told she has lung cancer?

Learn * Share * Care at LUNGFORCE.ORG

I only (not using that word lightly) have six more infusions of Imfinzi to go! My final treatment is scheduled for Thursday, April 4, 2019 – exactly one and a half years to the date of when I went to Walgreens clinic for the initial visit that started this rollercoaster ride. I am so looking forward to it!

“Sometimes you have to go through things – not around them.”

“Cancer may have started the fight, but I will finish it!”

As always, love and peace to all and Happy New Year!

Kat

Over Half Way There and Living on Prayers (and Positive Thoughts and Love)!

Since my last post at the end of August, I have made it past the half-way point of the total number of Imfinzi infusions I am scheduled to receive. Some days are better than others, but that is life, no matter what your circumstances. One of my favorite sayings is, “it’s not about what happens to you, it is about how you react to what happens to you”.

The next leg of this journey…

Thursday, September 6, 2018 – Imfinzi #11.  I met with Dr. H prior to my infusion.  I told him I was still experiencing the uncomfortable swelling in my body, mostly in my hands and feet, and that sometimes the pain from it woke me up in the middle of the night.  Continuing to take Aleve every morning helps, but the pain never really goes away (kind of like the headaches I have daily). The tinnitus (ringing in my ears) seems to have gotten worse as well.  He suggested that I continue with the Aleve and rest with my feet up as much as possible.  He also scheduled me for a CT Scan on November 1 and said that I would not meet with him again until then.  I had my infusion and headed home as usual for lunch and rest.  The next two days I had the usual body aches and exhaustion that I was almost getting used to.  After that, my energy came back a little at a time, but I was still having the sensation off and on that I couldn’t catch my breath or take a deep breath, which meant that my old friend, anxiety, came to hang out more often.

Thursday, September 20, 2018 – Imfinzi #12.  I went straight into the infusion room and every chair but one was taken.  I had never seen it that crowded and it made me sad.  For the hour and a half I was there, all I could think about was everyone who is suffering from this horrible disease and hoping that their outcome is as good as mine has been, so far.  Even though I had been feeling crappy a lot of the time, I left that day feeling thankful for my wonderful Doctor and his staff.  I was more exhausted than normal, but so fidgety I couldn’t relax.  No rest for the wicked!

Thursday, October 4, 2018 – Imfinzi #13 – The Halfway Point!  Straight to the infusion room again and it was just as crowded as the last time.  I chatted with one of the nurses about how I had been feeling some weird stabbing pains in my port and she said that it was most likely from scar tissue that has built up around it.  She was able to access it like normal, so she wasn’t concerned about any blockage and told me to let them know if it got any worse.  I also told her that my recovery time after the last infusion had taken a few days longer than usual with lots of anxiety, and that I was having more frequent bouts of exhaustion.  She said to keep a record of any changes after this infusion and to call them if the pain in my port worsened.

Friday, October 5, 2018 – Jake and Makayla came in to celebrate Jake’s 25th birthday and on Saturday morning, they announced that Brian and I would be grandparents!  To top it off, they are due on our 30th wedding anniversary, May 27, 2019.  We are so excited!  We had a great visit and lots of fun sharing the news with family and friends.  Am I really old enough to be a grandma???  Holy cow, time just keeps flying by so fast!

Thursday, October 18, 2018 – Imfinzi #14.  I actually had to wait for a seat to open up in the infusion room and I found out why they have been so crowded.  The hospital I go to was bought out by another one and so, a lot of people who used to have to drive much further for their treatments are now able to come to this one.  I am happy for those who now don’t have to drive so far and  I can wait a few more minutes for them to finish with their treatments before I have mine.  I let the nurse know that I was starting to experience some pain when I try to take deep breaths and it seems like I am getting winded and tired easier.  She said that I should use my inhaler up to four times a day to see if that helped.  I was scheduled for a CT Scan in a couple of weeks and would be meeting with the Dr. H afterward.  Unless the symptoms worsened, I would wait to discuss my concerns with him at that time.  Another strange thing is that the tips of my fingers were starting to crack and peel and it was pretty painful to pick thinks up, touch things and even wash my hands.  The nurse recommended that I try Aveeno lotion or something similar to keep them moisturized.

Thursday, November 1, 2018 – CT Scan and Imfinzi #15.  Holy cow, did I have scanxiety before this test!  For the entire week prior, I had a hard time falling asleep or staying asleep.  I had nightmares almost every night.  When I was awake, all I could do was fidget.  I was crabby and totally lost my positive outlook.  On the morning of the scan, I woke up super early and tried to meditate (impossible to do with your eyes opening every few seconds to check the time) and not fidget.  Brian took the day off to go with me, and I was so glad he did.  After the scan, we stopped for breakfast and then made our way to see Dr. H.  He showed us the images from the scan on his computer and said that there was no signs of cancer (woohoo!).  There was a very definite image of the growing scar tissue from the radiation, noticeably more than there was on the x-ray I had had in July.  Brian asked if there were any red flags and Dr. H said there was no cause for alarm as I wasn’t having any issues with coughing, but that the scar tissue was most likely the reason for the tightness and pain I had been experiencing in my chest.  He also said the scar tissue may even get worse and that it may or may not eventually dissipate.  Brian asked him about the swelling I continue to experience in my hands and feet and Dr. H decided to prescribe 10mg per day of Prednisone (a corticosteroid that prevents the release of substances in the body that cause inflammation, but it can also suppresses the immune system) to see if that helps.  I let him know that about a week prior I had begun to occasionally see a blue light in my peripheral vision in my right eye.  He said that it could be from the headaches that I have on an almost daily basis and that the Prednisone may help that as well.  If not, he suggested I see my eye doctor.  After speaking with Dr. H and getting the results, I felt like a huge weight had been lifted from my shoulders.  Brian and I headed for the infusion room, which, of course, was almost full.  We settled in and both fell asleep from the exhaustion of worry as the clear liquid dripped through the IV and into my port.

**************************************************************************************

I now have only 11 more infusions over the next 22 weeks and I’ll be done (at least that is the plan).   I am hopeful that the steroid will help with the swelling and blue light (K-Mart blue-light special, as my sister called me when I told her – funny girl, she is).

At this point, other than another x-ray around early February, the next scan I will have will be after I finish with all of the Imfinzi infusions.  This one will be a PET Scan in May, just to make sure the cancer has not metastasized.

As the holiday season marches in, I have much to be thankful for.  It is so much different than last year, when I was very scared I may not be here to see another one.  In all reality, spending quality time with loved ones, in person or over the phone, should be something we strive to do all year long, not just when the calendar dictates it.

I look forward to a wonderful 2019, where I anticipate being cancer free, celebrating 30 years of marriage with my amazing husband and holding my new grandbaby!

“It is not happy people who are thankful…it is thankful people who are happy.”

“Give thanks for all of the opportunities that even our struggles bring.” 

“In the New Year, never forget to thank your past years because they enabled you to reach today! Without the stairs of the past, you cannot arrive at the future!” ― Mehmet Murat ildan

I wish you all great blessings, profound peace and amazing love!

Kat

To Imfinzi & Beyond…

According to my latest CT scan on April 11, the cancer is gone.  The tumor and enflamed lymph node were essentially obliterated by the chemotherapy and radiation treatments I had undergone over the previous four months.

During that time, a new immunotherapy drug that works with the immune system, Imfinzi (aka Durvalumab), had been approved by the FDA for use in patients with in-operable Stage III non-small cell lung cancer (NSCLC), whose disease has not progressed following concurrent chemo-radiation therapy (that’s Me!).   What we hope it will do for me in the long run, is exactly what it is intended to do, which is give me the opportunity to live longer without the cancer metastasizing (spreading to other organs).  That is great news because, up until now, there hasn’t been much in the way of further treatment for my type of lung cancer, beyond chemotherapy and radiation.

The decision to take Imfinzi was not an easy one for me.  Even with all of the good things Imfinzi could do to help me, it also has some potential side effects that are pretty scary.  Among other things, it can cause my immune system to attack normal organs, which can become a life-threatening issue.  That last part was the hardest for me, as I felt like I had just fought like hell to save my life!

After a great deal of anxiety and deliberation with my family, friends and doctors, I decided to go ahead and say yes to Imfinzi.  For one year (baring any complications), I am scheduled to receive an infusion of Imfinzi through my port every other Thursday, for a total of 26 treatments.

And so it begins…

Thursday, April 19, 2018 – Imfinzi #1.  My husband, Brian, and I met with Dr. H prior to the first infusion.  My nerves were shot and I was exhausted from not sleeping very well the night before, because I was so nervous.  Dr. H told us that he and his staff would watch me very closely that day, to make sure I didn’t have any reaction at the infusion site.  As I sat down in the all too familiar infusion room, I worked on taking calming breaths to bring my heartrate back to normal.  One of the nurses came over to me with a much smaller IV bag than I was used to seeing (and it was only one bag, vs. the six I was getting with chemo).  She told me my bloodwork, which they check at each visit, showed my white blood cell counts were low, but everything else looked alright.  She hooked me up through my port and told me the total infusion would take about an hour.  Brian covered me up with my blanket that I bring to every appointment (my friend, Cindy, made it) and I closed my eyes.  Before I knew it, the IV bag was empty.  I was told to call with any questions or concerns and then we were in the car, driving home.

We live pretty close to my oncologist, so we were walking in the door at home about fifteen minutes later.  I was starting to feel really tired, so I laid down on the couch and put a cool rag over my eyes as I also felt a headache coming on.  Brian went to pick up some sandwiches from Subway but, by the time he got home I was nauseaus and couldn’t eat anything.  I tried to take a nap, but was unable to relax enough.  I felt crappy and jittery the rest of the day and most of Friday, kind of like I was coming down with a cold, but I had a lot of energy.  By Friday night I felt pretty good, so much so, that I remember thinking how much different this was than the effects of chemo and I was hopeful that this was it and I would feel great from here on out.

But alas…

Aside from already experiencing some symptoms of forgetfulness and confusion from what is known as “chemo brain”, over the next two weeks I developed a faint rash on my face and neck, had intermittent tightness in my chest, and heart palpitations.  I wasn’t able to sleep more than six hours a night, and usually only about five.  It seemed like I was either really cold or having hot flashes all the time.  I was having headaches almost daily.  When I got up from sitting in the same position for too long, it felt like the skin on my sides and legs was being stretched to the point of being painful.  I was still losing my hair, but it was breaking off instead of falling out at the root.  I had periods of nervous energy where I couldn’t sit still.  I began to gain weight from fluid retention and, because of that, my hands and fingers were always swollen and sore.  I couldn’t type, hold a pen for very long, wear my rings, make a fist or hold Brian’s hand without pain.  My feet would swell and it hurt to walk, unless I sat with them up all day, which would cause the skin stretching sensation I noted above.

The thing is, these symptoms could be caused from any of the treatments I had had.  Chemo and radiation side effects can sometimes take months or even years to present themselves.  Reading through this, after typing it up from my notes, makes it sound so awful, but truth be told, I was glad that I didn’t feel nearly as bad as I did after a chemo treatment.

Tuesday, May 1, 2018 – I had a six-week checkup with Dr. M, my radiation doctor.  He said I looked pretty good.  He said to tell my husband that on a scale of 1 to 10, I was a 42 and that at my next appointment in April of 2019, he expects me to be a 100.  Funny man, he is.  He also said that I could develop breathing issues at some point, due to the radiation, and if that happens, we will deal with it then.  I have always been a fan of yoga and had practiced it off and on for years.  After this visit with Dr. M, I decided to work on practicing it on a daily basis.  I knew, from past experience, that it would help me get my strength back and I wanted to work on deep breathing, in case the breathing issues he mentioned did show up.  I also began strolling on my treadmill for a bit each day.  After getting in 10,000+ steps a day before all this began, it was hard to see how little my ability was to get to 3,000 steps in a day now.

Thursday, May 3, 2018 – Imfinzi #2.  This was the first time I had gone to see Dr. H by myself.  Brian had taken so much time off work since all of this began, and I didn’t think it was necessary that he come to each infusion at this point.  Dr. H and I discussed all of the side effects I was having.  He suggested 10mg of Melatonin to help me sleep longer each night, as well as two Aleve each morning when I woke up for the pain I was having in my hands, feet and sides.  He said if anything got worse after this round, to call his office and we would address it with another game plan.  Once again, my blood work was alright, except my white blood cells were still a little on the low side.  I was in and out of the infusion room in a little over an hour.  I headed home, ate lunch right away (before any nausea could set in) and settled in on the couch for the rest of the day.  Again, I was really tired, had a headache and just felt crappy with a side of the jitters.  By Friday evening I had a burst of energy and felt pretty good again.  This lasted until Sunday afternoon, when I started feeling run-down with almost flu-like symptoms.  These symptoms came and went until Wednesday.  Other than that, I was tired most of the time, but so jittery I couldn’t rest.  The Melatonin didn’t seem to be helping, but the Aleve was.  My hands were still tight and swollen, as were my feet, but the pain wasn’t as bad.  The stretching sensations slowly began to disappear, but I was now experiencing a feeling of burning at each of the four spots where I was treated with the radiation.

Thursday, May 17, 2018 – Imfinzi #3.  Once again, I met with Dr. H before my infusion.  We discussed how I was feeling and he said that he believed the stretching and burning sensations were nerve related.  I also told him about how jittery I had been feeling and he said to make note of how often and how long I was feeling this way and to let him know of any other changes.  He told me that after this visit, I would only be seeing him every other time that I came in, unless there were any issues that came up.  In – out – home in an hour and a half.  Lunch and relax.  Same symptoms as last time only the flu-like symptoms didn’t hang around as long and, thankfully, the jitters seemed to have calmed down as well.

Thursday, May 31, 2018 – Imfinzi #4.  My first infusion without visiting with Dr. H beforehand.  I went straight into the infusion room and settled in to have my port accessed for a blood draw and then the IV.  I covered up with my blanket, popped my earbuds in, tuned to my relaxation radio station and promptly fell asleep.  After what seemed like seconds, the nurse was nudging me to wake up so I could leave.  Again, I ate lunch as soon as I got home and crashed on the couch for the afternoon.  When I woke up Friday, I felt pretty good.  Other than the usual headache and nausea (which didn’t seem to be as bad this time), I was able to start working on my blog, which I did most of that weekend.

Monday, June 4, 2018 – I went to get my hair cut, just to get the dry ends removed.  The hairdresser was very gentle, as my scalp has been pretty tender since my hair started falling out.  Once she washed it and towel dried it, I heard the words, “well, it’s starting to grown back and it looks like it may be curly”.  WooHoo!  I mean, tears of joy that it was starting to grow back, but curly??? not sure about that!  I guess time will tell how crazy that will look, haha.

Thursday, June 14, 2018 – Imfinzi #5.  I met with Dr. H and we talked about the same side effects I was having, but that they didn’t seem to be as bad as they were at first.  He said that some of them might be caused from getting off of the chemo and radiation and then starting the Imfinzi pretty soon after.  In other words, it’s kind of like the chicken and the egg theory.  We may never know which treatment caused which side effects, we only know that I have them.  The treatment was, once again, in and out and home.  Same down-time and then, thankfully, not so bad.

Monday, June 18, 2018 – VACATION!  Brian, our son Ben, and I boarded a plane to Myrtle Beach, SC.  We were there for five glorious days to celebrate the end of another school year, the end of the nasty chemo and radiation treatments, the clear scans, the immunotherapy treatments that seemed to be going well, and life, just to celebrate being alive!  I felt normal and happy and childlike in my excitement to be away from it all, if only for a short while.  It’s true what they say…life IS good!

Thursday, June 28, 2018 – Imfinzi #6.  Another infusion without meeting with the doctor first.  My white blood cell counts were starting to come up and the rash on my face was completely gone.  My hair was noticeably growing back in and it was making my long hair on top poof up all over the place.  For some reason, I was starting to have panic attacks again.  I am usually pretty good at figuring out the triggers that cause them, but not this time.  I asked my support group mediator about it and he said that, maybe because my daily routine was now somewhat “normal”, my body was trying to figure out how to accept all that had happened and was still happening.  I continued to walk often and to practice yoga each morning, once the pain and stiffness dissipated after the Aleve kicked in.  Though I was still retaining weight from the treatments, I felt stronger, and my clothes were starting to feel a little less tight.  When the panic sets in, I either try to meditate it away with relaxing music and calming breathes, or I turn on dance music and just move with it.  Sometimes it helps, sometimes it doesn’t, and sometimes I just ride it out repeating the mantra, “this, too, shall pass”. 

Saturday, June 30, 2018 – BBQ at my sisters to celebrate Independence day.  We have had a very hot and dry summer this year, and I have mostly stayed indoors.  This day I felt pretty good and Gwen has a nice pool, so I slathered on my sunscreen and parked myself on a raft.  It wasn’t long before we were all playing with a beachball and goofing off.  I was careful not to over exert myself, but by the end of the day, and the entire next day, I felt an exhaustion like I hadn’t felt since I was receiving radiation treatments.  I also felt nauseas and achy all over, together with a killer headache.  By Monday, I felt much better.

Thursday, July 5, 2018 – Road trip to visit Jake and Makayla!  Brian, Ben and I piled in the car and spent the next three days at the King Family Farm (Makayla’s family farm – where she and Jake live & Jake farms with her father).  This was prime corn picking time, so we got to help with shucking and bagging the corn to be frozen for the year.  What an awesome experience!  Along with farming close to a couple thousand acres, they also have a nice size garden, which Makayla and I spent some time in on Friday morning.  Well, by late Friday afternoon and all that evening, while everyone else was enjoying BBQ and shooting off fireworks, I was feeling just as awful as I had felt the previous Saturday at Gwen’s house.  I put two and two together, did a little Google research, and figured it had to be my exposure to the sun on both of those days.  I would discuss this with Dr. H at my next visit, for sure.

Wednesday, July 11, 2018 – X-ray of my lungs – scanxiety again!

Thursday, July 12, 2018 – Imfinzi #7.  Met with Dr. H to discuss the results of the x-ray prior to my infusion.  He pulled it up on his computer and it looked like the lingering smoke from a large firework on a humid evening was covering my upper left lung (sort of like a tree made of smoke).  Dr. H said it was scar tissue from the radiation treatments and that, hopefully, my body would eventually absorb it.  Other than that, the x-ray looked fine.  I asked him about the sun exposure possibly causing me to feel sick the week before and he confirmed that yes, the radiation from the sun, coupled with the chemo and radiation I had received, was more than likely to blame.  Moral of the story – stay out of the sun for prolonged periods of time – and it may be this way for the rest of my life.  I received my infusion, headed home for lunch, and prepared to be down for a couple of days – my new normal for now.

Wednesday, July 18, 2018 – I noticed that I was starting to feel like I couldn’t take a full breath.  The same sensation that started this whole mess in the first place.  My chest felt tight, off and on, as well.  Even during yoga, I felt winded and I didn’t have any energy.  I used my rescue inhaler a couple times a day and started laying around in my recliner, more often than normal, to see if it would pass.  Needless to say, this played into my anxiety with a vengeance.  It lasted on and off until the Tuesday before my next infusion.

Thursday, July 26, 2018 – Imfinzi #8.  Arrived for my infusion, as early as they allow, to see if I could get some time to discuss my breathing issue with one of the nurses, because I wasn’t scheduled to see Dr. H this time.  We chatted for a while and she said that it could be from the Imfinzi or the radiation or the chemo or all three or even the weather (Grrr).  It seems like I’ll never know!  She said that if it gets worse, to use my rescue inhaler four times a day or if I start coughing to try Mucinex D to see if that helps.  Other than that, my blood work looked good and the infusion went as usual.  For some reason, this time the treatment made me feel like I had the flu.  Extremely tired, body aches, headache, hot and cold sensations and no appetite.  This lasted through the weekend.

Wednesday, August 1, 2018 – Like clockwork, I began to experience the same breathing issues that I had the last Wednesday after my infusion, and it lasted for the same amount of time.  Riding the anxiety train again, I waited it out until my next visit with Dr. H.

Thursday, August 8, 2018 – Imfinzi #9.  I met with Dr. H and we discussed my breathing and the anxiety issues that have come along with it.  He believes the root problem is from the Imfinzi infusion messing with the scar tissue on my lung from the radiation, and the anxiety is a result of not being able to take a full breath.  Based on this, he decided not to medically release me to return to work until after the intense immunotherapy plan I am on is completed in April of 2019.  We will have to play the wait and see game as to if any other complications arise.  Blood work looks good.  Infusion went fine.  Home-lunch-rest.  Over the next two weeks, the pain and stiffness in my hands and feet seemed to be getting worse and it was, and still is, difficult to walk down the stairs from my second-floor bedroom without a few unflattering words escaping my lips.

Thursday, August 16, 2018 – I had a dental appointment to fill a cavity in between my two back teeth on the left side.  The worst part was the shots to deaden the area, but it went ok, or so I thought.  After a couple of days, I started experiencing pain every time I drank something cold and then it started to hurt when I chewed anything on that side of my mouth.  I went back to the dentist the following Thursday and she took a couple of x-rays and determined that I might need a root canal.  (WTF – BOO!)

Thursday, August 23, 2018 – Imfinzi #10.  I didn’t see the doctor this visit, but I mentioned the possible root canal to the nurse and she said that I would need to ask Dr. H before I did anything as she wasn’t sure it would be a good idea, due to possible infection.  Ugh!  Taking four Ibuprofen every six hours for the pain, which really only works for about three hours.  Planning to call the oral surgeon to schedule a consultation and then talk to Dr. H.  Hopefully they can recommend something for the pain until we can come up with a game plan.  This infusion kicked my butt and put me on the couch for the rest of the day and most of Friday as well.  Body aches and a headache, along with the pain in my mouth, left me exhausted.

Friday, August 24, 2018 – My favorite oldest boy and his bride came for the weekend to visit!  Other than the toothache and swelling in my hands and feet, I felt ok.  No specific plans during their stay, other than hanging out and playing games after dinner on Saturday.  Sunday we visited my parents at their new home, and then the kids left to head back home.  🙁

Monday, August 27, 2018 – Spoke with the oncologist office and was given the go-ahead to see an endodontist for a possible root canal.  Another “new normal” thing is that I will have to consult with my oncologist prior to having any medical treatments or tests for the foreseeable future.

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With 16 more Imfinzi infusions left, I am staying positive,  loving life, and counting my blessings that I have such a wonderful family and group of friends.

“You don’t always need a plan.  Sometimes you just need to breathe, trust, let go, and see what happens.” – Mandy Hale

“The only way to beat cancer is to accept the reality, embrace the pain and find the courage to move forward, one day at a time…”– anonymous  

That is all anyone has.  One. Day. At. A.Time.  Be thankful for this day!

Love and Peace to All!

Kat

 

 

 

 

Kathy with a “C”

I have one of those names that solicits the question, “how do you spell that?”

I was Kathy with a K – (Kat for short) for 49 years, even when it didn’t matter.  For instance, placing an order over the phone for carry-out shouldn’t really be a big deal, as Kathy spelled with a K or a C is pronounced the same.  None the less, the question is almost always asked, and I have invariably offered the answer, “with a K”.  That is, until Tuesday, October 24, 2017.  On that day, I became Kathy with a C.  The Big C.  The life altering, never-again-the-same C.

I had waited all afternoon for the call, and when it came, I swear the phone didn’t even ring.  I was just holding it in my hand and I remember putting it to my ear and hearing my doctor say, the words “Kathy it’s not good, you have cancer”.

As in great big – all caps – CANCER!

So, how did I get here?

First of all, I truly 1,000% believe that everything happens for a reason!

Second, yes, I am a former smoker who had smoked for 32 years.  I quit in November of 2012, when I was diagnosed with mild COPD, and I switched to vaping.  Quitting allowed me to stop the nagging smokers cough, no longer smell like an ashtray, walk up two flights of stairs with an armload of laundry and breath normally while doing so, and even take up running in 2014.

Third, I had no signs or symptoms that anything was wrong.  Not until a sunny, hot and humid, late summer day.

An unplanned journey…

September 30, 2017 – Our youngest, Ben, is a member of his high school marching band and my husband, Brian, and I volunteer for the pit crew, which means we move band equipment on and off the field during band performances.  On this particular day, the band was playing a competition in an outdoor stadium that has a very steep hill going down to and up out of the performance arena.  They did really well in the preliminaries and made it into the finals, so we moved equipment on and off the field twice that day.  After hustling up the hill for the second time, while pulling a heavy speaker cabinet, I had a difficult time catching my breath and my chest felt tight.  I attributed it to the thick hot air and the fact that I was practically running to get out of the way of the band coming up the hill behind me.

October 4, 2017 – I still wasn’t feeling well, so I visited the clinic at our local pharmacy.  The nurse practitioner listened to my lungs and said they sounded clear, but she could tell I was having difficulty taking a deep breath.  She prescribed Singulair and five days of Prednisone.  She almost (remember my comment above about things happening, or in this case, not happening for a reason) gave me a steroid inhaler, but decided against it, saying that if I didn’t improve, to contact my general practitioner.

October 11, 2017 – I had taken the last of the Prednisone four days prior and I was back to feeling short of breath and tightness in my chest.  I called my doctor’s office and got in the same day.  My doctor was out, so I was evaluated by a nurse practitioner I had never seen before.  Based on my symptoms, she ordered a chest x-ray (again, things happen for a reason) instead of just prescribing a steroid inhaler, which she too almost did.

October 13, 2017 – My doctor, Dr. C, called and said the x-ray showed a small mass in my left lung.  She couldn’t rule out an infection, so she ordered a CT Scan with contrast for October 17.

October 18, 2017 – CT Scan showed a tumor, roughly the size of a quarter, in my upper left lung and inflammation of lymph nodes below the tumor.  I was scheduled for a second CT Scan on October 20, this one with a needle-led biopsy of the tumor.

Side Note: The CT Scan needle-led biopsy.  Holy %&# * that hurt!  The procedure requires one to be awake so the doctor can instruct when to breathe in and out and when to hold it.  I had to lay on my back and be completely still.  My upper left chest, just above the tumor was cleaned and covered with Lidocaine cream.  Then, I was given three injections of Lidocaine via a long needle, to deaden the internal area (OUCH – I remember tears running into my ears and not being able to wipe them away).  The CT scan was used to guide a very long tube as it was inserted in my chest, through the wall of my lung and into the tumor.  A tool was pushed through the tube and was used to grab several pieces of the tumor for biopsy.  When it was finally over, after about 45 minutes, I was bandaged and helped to my feet.  I was in severe pain and I kept telling the nurse I thought something was not right.  I felt like I had been stabbed (which essentially is what happened).  She assured me that everything went as it should have and that I would feel better soon.  It was so hard to walk out of the room and see my husband and sister watch me walk down the hall to be discharged, all three of us crying.  We stopped and picked up some soup and sandwiches on the way home and, after I ate and burped several times, I did feel a bit better.  I have always said I am allergic to pain, and this certainly proved it!)

October 24, 2017 – The call that changed my life and the lives of those I love.  After hearing the diagnosis, my mind shut down and I bit my tongue so hard it hurt for days.  I had the overwhelming desire to scream, run, and drink a bottle of whiskey, all at the same time, but my doctor kept talking and I couldn’t move.  I don’t remember actually hearing what she said.  My controlling and organizational nature had pre-determined that I would have a notebook and pen handy to write it all down.

  • Oncologist appointment October 27 – 10:30
  • non-small cell adenocarcinoma – upper left lung
  • possible spread to lymph glands
  • too young for this

Sharing the news with our kids, parents and close friends…

Since our oldest son, Jake, and his wife, Makayla, live about a four-hour drive from us, we told them over the phone, which was really hard to do.  Thankfully, they decided to drive in the next evening to be here when we told our youngest.

Telling my parents was the hardest part.  My sister, Gwen, already knew because I asked her to go with us to the biopsy.  My father had lung cancer in 2006, which was found very early.  He had the tumor surgically removed and no other treatment was necessary.  Ironically, he had just two weeks prior been diagnosed with prostate cancer and was getting everything setup to begin radiation for that.  With both of us going through cancer at the same time, my mom was a mess.

We told our best friends and my husband took care of telling his parents and his sister, as I didn’t feel I was up to telling anyone else.

Of course, I had to share my situation with my boss and she informed my coworkers, who became my cheerleaders throughout my treatment.  Not a day went by that I didn’t receive at least one note, letter or card in the mail.  They sent care packages and prepared dinners for my family.  I was given the opportunity to work from home every day, and for that I am very thankful.

Testing 1-2-3…

October 27, 2017 – Brian and I met with my new doctor, a highly recommended, very energetic and extremely positive oncologist, Dr. H. He began teaching us the language of cancer, complete with vocabulary words we couldn’t spell or pronounce. I became thankful for my handy-dandy notebook, which became a traveling companion to every appointment and procedure. Dr. H ordered a PET Scan for November 1, MRI of my brain for November 3, and a liquid biopsy on the spot (fancy name for blood test) all to see if the cancer had spread outside of my lung and if I had genetic tumor markers. He said, “I am not in the business of curing cancer, I am in the business of killing it”. He never mentioned survival rate, other than to say he was aiming for seeing that I lived to be an old woman. He talked about chemotherapy, radiation therapy, and surgery. He spoke at length about a brand-new immunotherapy drug called Imfinzi that had recently been approved by the FDA for use in people with bladder and urinary tract cancer and was very close to being approved to treat lung cancer. We walked out of there feeling that I had been put in capable hands.

November 6, 2017 – We met with Dr. H to get the results of all of the tests. Thankfully, the cancer was only in my lung and had not spread anywhere else! However, it did appear that it may have infected my station six lymph node. In order to setup a plan of treatment, I would have to have a biopsy of the lymph node to determine if it was cancerous. The blood test did not show any tumor markers, so I would not be having targeted chemotherapy treatments.

November 8, 2017 – Appointment with Dr. F, a cardio thoracic surgeon, who agreed with Dr. H in that I would have to have a biopsy to determine if the lymph node was cancerous and that he would attempt to remove it either way. The procedure would require a hospital stay of one to three days and two weeks off work for recovery.

November 13, 2017 – I was admitted to the hospital for the biopsy. I didn’t lie earlier when I said I am allergic to pain.  When I woke up in recovery I was in the worst pain I had ever felt! Even the nurse cried along with me. Thankfully Dr. F believed in doing whatever it took to make me comfortable, so I was given some pretty heavy pain meds, which knocked me out for most of the next 24 hours. When I woke up enough to realize what was going on around me, there were two incisions, one on my back (where the camera was during surgery) and one under my left arm (where the surgical instruments were inserted), right where my bra strap goes. I had a chest tube in the incision under my arm, a catheter, oxygen, an epidural and an IV in my hand with three different bags of fluid. I honestly don’t know what I expected, but I wasn’t prepared for any of this. Thankfully my friend, Jan, stayed with me at the hospital that first night.  Dr. F said the surgery was pretty rough in that he had a difficult time getting to the lymph node because of its location. He was unable to remove it because he couldn’t tell if it had attached itself to my aorta. I was on a liquid diet until the epidural and chest tube were removed on the third evening of my stay, and that is also when Dr. F told me the lymph node had tested positive for cancer. After spending four days in the hospital, I was released very late in the evening on November 16.

Not my idea of a good time…

November 20, 2017 – Appointment with my oncologist, Dr. H. My diagnosis was Stage III-A Adenocarcinoma, the most common form of lung cancer in both smokers and non-smokers. We discussed how hard I wanted to attack it and, honestly, I think I just sat there waiting for someone else to make the decision. I was still taking pain killers from the surgery and I couldn’t wrap my brain around anything at that point. I remember Brian asking questions and Dr. H answering him and then, just like that, I was going to have the most aggressive form of chemo available because I was “young and healthy” and Dr. H felt that I could handle it (what exactly did that mean?). The plus was that I wouldn’t lose my hair (the farthest thing from my mind), and I would need to have a porta catheter implanted in my chest (WTF?) to receive two to three rounds of chemotherapy that would be administered every three weeks. More than likely, radiation would follow and then the soon-to-be approved immunotherapy drug, Imfinzi. I was given a vitamin B shot and told to start taking 800 MCG of Folic acid every day, along with Claritan (or the generic) for bone pain that I might experience from one of the chemo drugs (huh?)

November 24, 2017 – The day after Thanksgiving and I was, once again, going under the knife. This time for out-patient surgery with Cardio Thoracic Surgeon, Dr. F, to place my porta catheter (port for short). Four days later, I was standing in the shower with Brian holding me up as the water soaked off the bandage covering my port. Suddenly it was all real. Seeing the incision, fearing what was to come, unsure if it would work, questioning the side effects of the chemo, wondering if I was strong enough to do this, wondering if I would be alive next year at this time. The weight of it all came crashing down and I had a big pity-party, right there in the shower.

Fighting the “Good Fight”…

November 29, 2017 – The decision to fight this nasty, uninvited presence in my body with the “Big Guns” required a little extra ammo in the form of IV fluids. A nurse came to my house and accessed my port the evening prior to chemo. The very first time was excruciating because I hadn’t even had it for a full week and the area was still extremely tender. A large bag of saline was hooked up to my IV through the port. It was concealed, along with a pump, in a duffle-type bag that I had to carry around with me until the morning after chemo. I also had to take a steroid by mouth called Dexamethasone (I lovingly refer to it as the Demon Drug) in pill form, twice a day on the day before, the day of and the day after Chemo was administered. Well, within 30 minutes of taking the first dose, I literally wanted to pull my skin off! I called the oncology nurse at Dr. H’s office and she said to only take a half a pill a day from now on. Even that made me feel fidgety, but way more able to deal with it.

November 30, 2017 – My first chemo treatment. Brian and I met with Dr. H to discuss any questions, which I didn’t really have at that point. The nurse took blood right from my port, which had already been accessed the night before for the saline IV, and then I got comfortable in the infusion room and watched for over three hours as two different bags of anti-nausea drugs, one bag of Dexamethasone steroid (more of the Demon Drug), one bag of regular saline and two different bags of the actual chemo (Cisplatin and Alimta) were administered. When all of that was done, a small dental floss-size box was attached to my left upper arm. The medicine inside was Neulasta and it would release into my bloodstream about 27 hours after the chemo was finished. It is used to rebuild the white blood cells in your system that are killed or damaged by the chemo. Other than being super tired, I didn’t really feel all that bad that day. I actually worked from home all afternoon.

December 1, 2017 and beyond – I didn’t sleep most of that first night, probably due to the Demon Drug in the IV. My face, neck and ears swelled up and all were so red, I looked severely sunburned. The nurse came around 10:00 a.m. to remove the IV and immediately said, “yep, you have steroid face”. Well, at least I knew that wasn’t something unusual. Over the next few days, I started feeling pretty bad. Nauseous, no appetite, fidgety, exhausted but unable to sleep, pounding headaches, spacy, flu-like body aches, racing heart, constipation and my whole body (but most intensely in my feet) felt like it was on fire. I also had the sensation that my breath was so hot that it was burning my tongue – we began to call it Dragon Breath. I developed nose bleeds and started using saline nose spray, which greatly helped. I took the anti-nausea pills that were prescribed by Dr. H’s office, but they only worked for about three of the eight hours needed between doses. It was around this time that an old friend, whom I hadn’t been in contact with for many years, came to visit. Though I was a little hesitant at first, Mary Jane (in the form of hard candy) ended up helping me get through the hardest days by allowing me to eat and rest comfortably. Most of the side effects/feelings lasted on and off for the better part of two weeks after the chemo treatment. I continued to work from home every day. Some afternoons I would have to lie down for a bit, but I always worked my eight hours. Four days before I was to have the second round of chemo and was just starting to feel a tiny bit like myself, my hair started falling out in handfuls in the shower. My ever-present, sweetheart of a husband, researched and found a wig shop that would take our insurance. One afternoon we went out to lunch and stopped at the shop. Through some tears and help from a breast cancer survivor, we chose one, just in case all of my hair fell out. Another little nugget that came out of my husband’s constant search for anything that could help me/us through this chapter, was his discovery of CBD Oil, aka cannabidiol.

Side Note about CBD Oil: This all-natural substance is derived from the marijuana plant but it does not have the psychotic properties that THC (the chemical that gives you a “high”) has. After a little digging, he found it at the local vape shop where I was already getting my vape supplies. It is a bit pricey, but the dose is very small per day, so the bottle lasts longer than regular vape juice. It can also be used sublingually (drops under the tongue), but it doesn’t taste very good.

December 21, 2017 – Second round of chemo. Believe me when I say it took all I had to go back again, knowing how it was going to make me feel. I told Dr. H that my hair was starting to fall out and he said that it could be a good sign. (What???) It could mean that my body was so sensitive to the chemo that it was killing everything, including the cancer. I was scheduled for an x-ray on January 4 to see if that was true. Oh, and I went through the same side-effects as the first time, only they came on quicker and some were more intense, like the breathing fire and body aches. Jake and Makayla came in for a whole week to celebrate Christmas through New Year’s Day with us. I had vacation time available from work, so I took that time off. We didn’t do much celebrating, but I was so glad they were here. Makayla spent a lot of time just sitting with me and chatting or watching television (and laughing with me/at me as Mary Jane was there too), while my boys hung out playing X-Box together. We all played games and laughed a lot. No sweeter sound than hearing my boys laughing together. I was so glad they were here. After they left, I had a hard time making myself put away the Christmas decorations. I was seriously afraid that I might not ever see them again. About a week after I normally take them down, I was having another pity party and Brian sternly said, “just put the damn things away, because you will see them in about 11 months when you drag them back out again”. That’s all I needed to hear. Just someone to tell me I would live to see another Christmas.

January 11, 2018 – Third round of chemo. The x-ray I had the week before showed that the tumor and the lymph node were significantly smaller. Progress! This news helped me go through the chemo, yet again – third round. Same side-effects, but this time I felt like I could be dying. My body hurt so bad that I wouldn’t let anyone touch me. Brian or Ben would try to gently hug me or just lightly kiss my check, and there would be instant tears. No matter how I positioned myself, I was uncomfortable. My joints ached, my skin ached, my head ached. Mary Jane was here to assist, but there were times that I was pretty sure I was done living on this earth.  Add to it the fact that, just about the time I started to feel a bit of relief, around 10 days after chemo, my eyelids started to swell. They got so bad that, by the end of each day, it hurt to keep them open because it felt like they were weighted down. The nurse called it Periorbital Edema. No treatment for it, just had to wait it out. CT Scan scheduled for January 25.

January 26, 2018 – There is a term for the time in between having a scan and seeing your doctor for the results. It’s called “scanxiety”, and Holy Cow – I sure had a bad case of it on this day. I was extremely fidgety and teary eyed and downright bitchy! Through the waiting, my husband was right there, holding my hand and being nervous with me. After what seemed like days, Dr. H walked into the exam room and asked, “how are you today?”, to which I replied, “I don’t know…how am I today?” He came back with, “well let’s go to my office and look at things on the big screen”.  I almost couldn’t hear anything, because my heart was beating so loud in my ears. When we walked up to his computer and he pointed to the before chemo and after chemo images, I had to look at Brian for clarification, because I didn’t think I understood the words Dr. H had spoken. “The tumor is gone”. Gone? – GONE!” “And look here, the inflamed lymph node has considerably shrunk in size”. Dr. H looked at me and said, “I wasn’t sure I was doing right by you because this was such a harsh treatment, but it really worked!” Shock…silence…tears of joy, of hesitancy, of uncertainty. I literally just stood there like a statue with tears running down my face as the doc and my husband were jumping in to discuss the next steps. I truly would have been doing a happy dance, but when I heard the words, three more rounds of chemo and 30 rounds of radiation, followed by that Imfinzi word again, I just couldn’t muster it. I mean, I should have been shouting from the rooftops, “The tumor is gone – the tumor is gone!”, but all I could hear was, “more nausea, more pain, more headaches, more swelling… More… MORE!!! The oncology nurses and office staff were all smiling and congratulating me and I knew this was big, but why couldn’t I be as elated as everyone else?

January 30, 2018 – Met with Radiation Oncologist, Dr. M. After discussing the potential side effects, I was measured for my body mold. It doesn’t hurt to be measured for the mold, it just takes a while as they want to make sure the cancer will be targeted correctly by the radiation treatments. In my case, I would be positioned in the mold laying on my back. I was scheduled to receive 30 rounds of radiation, each weekday until finished.

February 4, 2018 – My 50th Birthday. Brian and several friends and family members planned a surprise party for me and I had a wonderful time! I even had a few glasses of whiskey to celebrate. It was so good to see smiling faces and to hear laughter. Everyone told me congratulations, and I thought they meant for making it to 50, but they were talking about the tumor being gone. Once I figured that out, I thought to myself that I really needed to find a way to be excited about it, but all I could think about was the fact that I would soon be starting more treatments and feeling like shit again.

February 8, 2018 – My first round of radiation at Dr. M’s and then on to Dr. H’s for my fourth round of chemo, a different less harsh drug, Carboplatin cocktailed with the same dose of Alimta that I had been getting. I also had the same anti-nausea drugs and steroid administered via IV, but because the Carboplatin was presented as a “smaller gun”, I didn’t have to have the pre or post IV, which was a nice change. One of the down sides of having radiation at the same time as chemo is that I had to go in to Dr. H’s office the day after chemo to get the Neulasta (the white cell builder) as a shot because it was unknown how the box I had been getting would react to the radiation. Wow, that shot was painful and by the day after chemo I was feeling pretty rough, making it difficult to drive. So thankful it was only a short trip to make.

Side Note: The radiation treatments – each day I went, I arrived about 10 minutes prior to my 9:00 a.m. appointment time so that I could change into a hospital gown and be ready when it was my turn. The technicians called me into the radiation room, which housed a very large machine that looked similar to a CT scan, but with more equipment surrounding the bed (more like a slab). The technicians would make sure I was positioned in my mold in exactly the same pose each day, using tiny rulers, lights and low dose x-rays to line me up to the targeted spots where I would be hit with the radiation beams. Getting into position every day took longer than the actual treatment and I was usually in and out within 30 minutes, except on Mondays, which is when I met with Dr. M to discuss questions and/or concerns. When I returned home each morning after the treatment, I made sure to eat breakfast right away because I would get pretty nauseous around 10:30 a.m. and that would continue for the rest of the day, every day.

February 19, 2018 – I was still having a very hard time being thankful that the tumor was gone and that the radiation seemed to be shrinking the lymph node. I researched and found a cancer support center in my area. I met with a counselor on February 26 and she signed me up for weekly group meetings to begin the week after my next chemo treatment.

March 1, 2018 – Day 16 of radiation and round five of chemo. Another Neulasta shot the day after chemo and then roughly three days of such intense body aches and swelling that it hurt to sit, stand, lay down or be touched by anything or anybody. The Carboplatin was less severe than the Cisplatin, in regard to side effects, but having chemo and radiation at the same time was not a walk in the park. I began to experience a profound exhaustion that would land my butt on the couch several times a day, but try as I might, I just couldn’t fall asleep, and would inevitably get up and go back to my make-shift desk on the dining room table to work. The weekends brought some relief from the effects of the radiation, and I looked forward to Fridays even more than usual for that reason.

March 6, 2018 – I attended my first support group meeting. There were six of us, a counselor and a student counselor present. All of us had different forms of cancer and were in different stages of treatment. Everyone was warm and friendly and so easy to talk to about feelings and symptoms. No judgement, just love and compassion for a neighbor going through this horrible disease. Even though I have an amazing support group of family, friends and co-workers, those in this meeting were people I could talk to about anything, cancer related and beyond. I was scheduled to attend every Tuesday that I felt up to it.

March 21, 2018 – Day 30 of radiation. My final treatment! Dr. M, the radiation techs and the ladies in the office all signed a “Certificate of Completion” and wished me well and told me they hoped to never see me again. Those words brought tears of joy to my eyes as I bid them the same parting sentiment.

March 22, 2018 – Round 6 of chemo – THE LAST ONE!!! We met with Dr. H before the infusion and discussed the next plan of action. A CT scan and then on to Imfinzi, the new Immunotherapy drug that, while I was undergoing chemo and radiation, had finally been approved by the FDA for treatment of my type of Lung Cancer. I would be among the first people to use it and was scheduled to begin mid-April. As Dr. H led us out of the exam room to the infusion room, he handed me some paperwork about Imfinzi (aka Durvalumab), which I began to read as my chemo was being administered that final time. This was no light reading at all. It mostly talked about how bad the side effects could be, death being one of them. I sat there wondering if it was worth taking it. I had to really focus on calming my anxiety that day, just so I could sit still in that chair as those bags of potentially lifesaving fluids were administered. When the nurse came over and unhooked me from the IV, everyone congratulated me on my last chemo. I was smiling on the outside, but shaking like a leaf on the inside, unable to be as excited as I should have been.

The Great Debate…

March 23, 2018 – I was feeling the effects of the treatment and they were pretty rough this last time. Looking back, I believe it was probably worse because of the weight of the decision I had to make about the Imfinzi. I texted a friend of mine, Allen, and told him of my uncertainty about starting this new immunotherapy drug.  He asked me questions about what I knew from the information Dr. H had given me. I filled him in on everything and he told me he would research it and let me know what he found. I felt somewhat better, just knowing that someone on the outside of my immediate circle was checking this stuff out.

March 26, 2018 – I was having panic attacks off and on all day and couldn’t stay focused on work at all. I was scared of hearing bad results on my upcoming CT Scan and I was really worked up about whether or not to start the Imfinzi infusions. After shutting down my work laptop for the day, I left the house and went for a drive, stopping at a nearby park that overlooks the Meramec river. I sat there for an hour, just watching the water flow by. I called my friend, Mike, who has experience with helping me calm down when I have anxiety attacks.  He let me voice all of my fears and then he told me to get a second opinion, at least to hear what another professional had to say about it. When I got home that afternoon, I received a text from Allen with pages and pages of information about the clinical trials of Imfinzi that he had found on the internet. At the end of the text, he told me to get a second opinion. I was beginning to see a pattern here.

March 27, 2018 – Support group discussion about Imfinzi. I presented the information I received from Dr. H about the possible side effects Imfinzi could have. They unanimously suggested that I get a second opinion as they could tell by my voice shaking and my legs bouncing uncontrollably how upset and uncertain I was. That evening Brian contacted a friend whose wife is a nurse at different cancer center. Within a couple of days, I had an appointment with Dr. M-2, an oncologist at her center, to discuss my concerns.

March 28, 2018 – Brian and I met with Dr. H to discuss Imfinzi in greater detail and to let him know that I was seeking a second opinion. He was 100% on board with me talking to someone else to make sure I was making the right choice for me. I’m pretty sure what Dr. H said next was the deciding factor for me. He said, “Imfinzi is now in the medical books as the next step after chemo and radiation for your type of lung cancer. If you didn’t receive your diagnosis until after Imfinzi had been made a protocol, you wouldn’t have even questioned it, because you took the chemo and radiation without much thought as it has been a known protocol for a long time”. Dr. H also strongly felt that I would benefit from some time off work. He said it would give me time to digest everything that had been going on for the last several months and that I needed to work on calming my nerves and alleviating as much stress as possible. Together we felt the time off could help me make the best decision regarding further treatment. I spoke to my boss the next day and, on March 30, 2018, I went on short term disability leave with no end date set.

April 11, 2018 – Scanxiety! I had a CT scan and then went straight to Dr. H’s office to go over the results. Wow! No Tumor! No Enlarged Lymph Gland! Scan showed ALL CLEAR! Oh, I found a way to be super excited that day! Dr. H said “you really made me think on this one. I also wondered if I was being a good doctor, with everything I put you through.” My eyes filled with tears of joy and I was so ecstatically happy that I don’t recall my exact words, but I’m pretty sure they were, “you are not a good doctor, you are a great doctor” and I gave him a big hug! Cancer free! I am once again Kathy with a “K”!

April 16, 2018 – We met with Dr. M-2 for a second opinion and, after looking at all of my test results and treatment plan, he said “Yes, take it!”. He said I looked good and my scans looked good. He had a small concern about the six rounds of Alimta that Dr. H had given me, as it is known to cause inflammation of the lungs when given along with radiation, but thus far I had no signs or symptoms of that. He said to try it and, if it didn’t work out for me, I could always stop taking it. His recommendation, coupled with the comments from Dr. H, gave me the tools I needed to say yes to Imfinzi.


Putting this chapter of my life out there for all to see has taken awhile to compile. Though it seems like a pretty long read, it is merely a blip on the radar screen, and I haven’t even begun to share my Imfinzi experience. That will be the topic of my next post.