Saturday, July 31. 2010

  
    ** The spacing on my final copy went haywire; I have tried to fix it twice, looks good in 

the edit mode, then bad in the publish copy. Sorry, but it bugs me - a secretarial thing, I guess! 

  No, I haven't fallen off a cliff!  I have felt great all week and last week's cycle of chemo seems 

so far in the past.  It's almost as though it never happened.

  Our plans are set for meeting in San Francisco next week.  My sister is in overdrive, staying up 

until the early hours, cleaning house before she leaves.   Is that just a female thing, wanting to leave everything in order (or better) before we leave for a trip?  I have never noticed that it bothered my counterpart.  I remember in our first apartment in Illinois, "hiding" all the dirty dishes in the oven 

before we took off for a weekend in Ohio.

  Tuesday evening, my principal and the rest of the ladies from our school office (save 1) met for 

dinner at the Cheesecake Factory on the patio.  It was so much fun and good to see all of them.  

They all brought Chemo gifts - several plaques with encouraging words, great hats to go with 

my new "do" - whatever that may be, and a fabulous pair of long, big, purple chandelier earrings, 

a headband with purple bling, and the necessary purple wand to round out the ensemble!  Thanks 

you all - I really enjoyed it!

  I think that this will be my 17th year at Warren Elementary and I have to say that I work with 

such great people.  I know so many who aren't happy where they work, but after all these years, 

I still love what I do, and the people that I work with make such a difference; I am really blessed!!!!

  I picked up my wig yesterday and wore it for the rest of the day.  I still have a full head of hair 

which gets mooshed under a mesh "scull cap" which is followed by the wig.  It's very simple 

looking; not anything that departs too much from the way I normally wear my hair, but I feel 

like I'm wearing a sign that says "Yes, I AM wearing a wig"!  I didn't realize that wigs take a 

lot of maintenance and I came home with about $100 worth of supplies to keep it clean and 

looking snappy.  Our cat hasn't noticed it yet. . . .

  My next medical milestone will be Monday for another blood test on my red, white, and blues.  

So, until then . . . . .  I am still so joyful and praising the Lord for all that He's done for me!

                                                                   

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Monday, July 26, 2010

  At church yesterday the sermon was about the Lord being our strength and our song.  We should rejoice and let no one steal our joy!  Well I have joy and I am rejoicing because I received a good report from the doctor today!  I went for blood work to have my red, white, and blue {platelets} blood cells tested and all the numbers were good.  The doctor was happy and that made me happy!  He also asked how I was feeling after the chemo and I told him that I felt really good and hadn’t really had any side effects and he said that I can expect the rest of the treatments to affect me the same. {I CAN HANDLE THAT!} 

  Rather than sit on the freeway during rush hour, we ate outdoors at Ruby’s, then went to Fashion Island to kill some time.  {Right, I was really in the mood to shop}.  Terry went to computer nirvana {the Apple Store} and Blair and I went to Anthropologie, by way of a watch counter where she wanted to show me a watch that she was interested in.  Well, since I was feeling so celebratory and somewhat benevolent {do you like those words?}, we both ended up getting chemo watches!  That’s what I call them, at least, and I will lump them into the same category as ‘chemo brain’ and ‘chemo blanket’, since they are directly related to my current state of affairs!

  Last Spring, my sister, Lindsay and I began talking about meeting in San Francisco and driving down the coast sometime this summer.  The idea kind of got shelved when I found out about the lymphoma, but the trip is now on again and I’ve thrown her adrenaline into overtime, because we’re going to take the trip next week!  Blair is going to nail down a lot of the particulars for us as both Lindsay and I lack the expertise in that department.  We’re hoping to find a direct flight for Lindsay, as she hates to fly and will probably take something for mood enhancement - we would hate for her to miss a connecting flight, plus it would add one more takeoff and landing!  I’m sorry Lindsay, I know that this is at your expense, but the thought of you wandering in an altered state in an airport is just too much!  You will get here and we will find each other in the airport in San Francisco!

  A thought has been going through my mind lately, and it is that 'God is in the details'.  I don't know that it's from the Bible, but looking back on the last 3 weeks from the time I found out about the lymphoma, God has certainly been in every detail of what's been happening in my life.  I'm still working on relaxing and letting Him just do it all, without my help; I'm not a super controller, but it's really a comfort to know that He has it all handled - and He's doing a great job!  I AM JOYFUL AND I AM REJOICING!

                                                                   

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Saturday, July 25, 2010

A Cucumber, for heaven's sake!


  I know that you're wondering - what???
  Let me go back to Thursday and Friday.  I never did have any side effects from the Neulasta shot and just hung out at home on Friday and enjoyed the fact that I had no place to go.  Terry had 2 appointments out in the Valley, so was gone all morning, but Lupe was here. {organizing and babysitting, if I needed it}.

  By Saturday morning, I felt so GOOD!  Just realizing that I was going to be able to go to the picnic was so great!  And I was feeling NORMAL, not a "new normal", but the old normal!  Blair was spending the weekend with us while Justus was at a bachelor weekend in Las Vegas.   We all knew that we needed to leave the house by 12:00 to get out to Hesperia by 2:00.  Somehow we always sabotage ourselves and get involved doing other things, then start to pull it together too late to leave the house on time.  For some reason we NEED to add ANXIETY to the mix.  As I have said before, the Schrons are not fun to travel with especially when we are running late and don't know for sure where we're going.      We did arrive about 1/2 hour late, but fortunately they had given us a bogus time{my assumption} to allow for our late arrival.  By the time we arrived, we had 'enjoyed' each other's company so much that Terry kicked us out of the car so he could have some personal time before joining the party!

  The picnic was fun and it was great to see our sons and their wives and all 5 grandsons.   Water balloons were the hit of the day and the majority of attendees got soaked on a regular basis.  It was at least 100 degrees {I can't find that thing on my keyboard}, and the wind was blowing like crazy.  Humidity was low, unlike the Midwest, so when you broke a sweat, it dried almost instantly.  The park had a water park, cows, horses, camels, gophers, snakes - though I didn't see any, thankfully, and lots of ants!  It was a fun day and we were so glad that we were there to celebrate Zek's graduation and Luke's 16th birthday.  All of our grandsons are involved in Boy Scouts and are leaving this week to go to camp with their dads.  How cool!

  Okay, so back to the cucumber . . . . we were talking about the fact that I could not remember the name of a cucumber on one of my chemo days.  Terry had cut one up and put it on my plate for lunch and I just drew a blank as to what it was called.  I asked him to give me a clue and he said "Q" (or at least that's what my brain saw) and I still couldn't figure it out!  Then he told me the name, and a few minutes later, I had forgotten again!!!!!  Terry loves to share that kind of information with people, so our son Britt knew about it, told his wife, Lisa, who reassured me that there is something called "chemo brain", {which, I think, is a scientific name for a glorified senior moment after one has experienced chemo!}  I guess that you have to live at our house to appreciate our sometimes dippy sense of humor, but I truly think that we have laughed more since this whole thing started than we had laughed for a long time.

                                                            IT  WAS  A  GOOD  DAY!

Thursday, July 22, 2010

  Well, I guess that I overdid it yesterday.  I may have said it before, but I seem to have a quota on tears, and because I didn’t really cry at all yesterday, they are free-flowing today!  A wonderful mom from my school, Lupe, has been helping me by cleaning out and organizing lots of areas in our house.  I love being organized, but can’t get the job done for myself!  So, I was up early, to try and be ready for her when she came at 8:00.  You know, clean up for the cleaning lady!

  Also today, there is going to be no chemo, but I was anticipating a shot of Prednizone which I heard was going to cause leg aches, etc. {general misery}  So I would be leaving my new “comfort zone” of chemo, which had been such a good experience, and would be moving into unknown territory.  I was a mess!

  The shot turned out to be Neulasta, which was given in the back of my arm by a very nice nurse who injected it  v e r y  slowly - so it didn’t hurt at all.   It’s a white blood cell booster used to help reduce the risk of infection for chemo patients.  It does have side effects - mostly flu-like symptoms of aching, etc. that could last all weekend.  I’m in a better mental state so know that I can deal with if when and if it happens.

  We have a family picnic to go to in Victorville on Saturday; our oldest grandson, Zek, graduated from high school, his brother, Luke just turned 16, and Chris and Erika have invited family and others to join in the celebration.  I don’t want to miss it, so I guess that I’ve made myself a little crazy {crazier} over this shot thing.

  After the shot, Terry indulged me by going to look at the rattan headboard that I’d been looking at.  We found one that we liked better - made of woven sea grass and put a deposit on it since it was the last one.  It would need to be stained, but was a decent price.  I wanted to see the one again that was at the mall, and it turned out to be the winner - perfect color, size and shape.  Plus, we liked the mermaids that were hanging on it  {just kidding - sea grass, get it?}

  I received a number of cards today - thanks to you who sent them - I appreciate your kindness.  I have avoided my cell phone, but please don’t take it personally - you know who you are.  I am still in what I call my “fragile” state and could cry for any reason, and don’t want to make anyone feel bad.

  Oh no, Terry has just walked in and has become the official “water police”! So, I’m gonna drink, chug-a-lug, chug-a-lug, chug-a-lug!

                                                                   

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Wednesday, July 21, 2010

What do ANTICIPATION and CONSTIPATION have in common?  Both words share the same letters, but the real answer is WATER!  I’m a little lazy and cut corners sometimes, not deliberately, but more out of ignorance.  Drinking lots of water happens to be up at the top of the “to do” list of things that I’m responsible for during the time that I’m in chemotherapy.  The main reason for drinking 8 - 10 glasses a day is to “help your body eliminate toxic metabolic substances” and to have nice veins so they can find a good spot to insert the IV. So, I chugged 72 oz. of water before leaving for chemo and my veins were lookin’ good by the time we arrived in Newport!   I’ve been a slacker, but I’m working on it! 

   A pretty good drive on the way - Terry is realizing how the driving commentary really gets to me and makes my blood pressure climb.   The treatment was only about 2 1/2 hours long, so he got me tucked in, took my picture, and sent an email about “this is Jayme before she loses her hair or while she still has hair {or something along those lines}, so for those of you who received it and were a little confused, you just need to know that sometimes what’s going on in his mind and what goes into print can be two totally separate things!  Before I start my 2nd round of chemo, I may notice some hair loss - not a guarantee, but a good possibility.

  I do have really thick hair, but know that my current crop is starting to look a little tacky color-wise and my doctor has advised not to get it colored again as it will break off before I leave the salon.  I got a good gene from my dad and really don’t have grey hair, but it’s dark, so the contrast with the color I have woven into it makes for a real dark/light situation.  {Sorry about the dumb girl talk!}  SOOOOO, I decided that I’m going to handle things by ultimately getting my hair cut really short and just wearing a wig for public appearances.  If I lose my hair, then so be it!

  Blair picked me up from chemo and we went to Jenny’s Wig Center, which had been listed on a sheet that I picked up while at the doctor’s office.  Her place is on Tustin in Orange, and located closest to home, so I figured we could start there.  I’ve never been the type to dress up for Halloween, and the thought of wearing a wig is like dressing up to be someone that I’m really not - maybe you can relate?  A wig to me is like something green and shiny that could work with a costume.  But, this is going to be REAL LIFE!  Anyway, Jenny has a nice shop and she’s a cancer survivor, too, so she relates.  She helped me with several wigs and I chose one that looks a lot like I wear my hair now - {no Renee, nothing long and red!}  The color’s a little different, but I will have my new wig in a week!  We have “cannon ball” bedposts on our antique bed, so we already have a place for it when it’s not in use. {kidding}  Buttons should love it -   Oh, and Jenny goes to our church!  What a surprise, but then, not really.  God is always ahead of me!

  We moved on and got a quick lunch and went for pedicures; I had given serious thought to having my acrylic nails removed, but then reconsidered.  The doctor said that they are okay to have, so I’m keeping them.  I will just wear a mask in the salon.

  From there, we went to Blair and Justus’ apartment, where I had promised Blair that I would help her organize her workroom.  We got a whole lot accomplished and left there around 11:00 p.m.  Mind you, I’m still sort of buzzed by the steroids that they’ve given me and it’s way past my normal bedtime.  Got home and Blair helped me finally launch this blog.  In bed by 12:30 or so, but it was another great day, I felt full of accomplishment, and was so thankful to be functional during this new trip with chemotherapy!!!!  God is so good!

Tuesday, July 20, 2010

Today’s treatment was fine.  We had a much happier ride to the Center - only one discussion about other peoples’ driving, but it was short-lived!  No benadryl today, but I was pretty relaxed with virtually no anxiety.  My treatment only lasted 3 hours, so Terry got me tucked in and left for work.  I’m still working on the tons of food that he sent, but we’ll get that figured out!

The center offers hand or leg massages free.  I took the leg massage and it’s very different from what I’ve had with a pedicure.  They do more “laying on of hands” as they don’t want to disturb the business of what’s going on inside, but it’s amazingly soothing!  The masseuse explained the process to Blair who had come to pick me up.  A nice treat!

We ate lunch at Milk and Honey in Costa Mesa, a little place that has wonderful lavender tea lattés.  I’m in the market for a woven “rattan” headboard for Blair’s old room, so we checked out 2 stores before coming home to take a nap, because we were both a little sleepy, and Blair had to leave for work at 5:00.

It’s now 12:30 a.m. and I’m still up, but it was another great day, for which I am very grateful.

Monday, July 19, 2010

   Yesterday was such a good day and I felt pretty calm even knowing that my treatment would be starting the next day.  However, if you understand how satan works - he likes to crash and burn and offset the good by bringing on a lot of craziness and fear and I hate to give him any credit, but our morning got off to a really bad start.

  My appointment at the treatment center was at 8:15 in Newport Beach; and we had never been there before and I wasn’t entirely certain where we were going.  {You do not want to travel with Terry and Jayme under these circumstances!}  Terry was busy packing food for me, as it was going to be about an 8 hour day, and we needed to bring our own food.  Part of Terry’s personality can be overdoing, and he packed enough food for several people!  10 minutes until leave time and he hadn’t showered yet.  I was really trying hard to not get upset, but there was really a lot of TENSION !!! 

He was getting rattled and he often goes through this running commentary about other drivers when they’re not driving according to his standards - plus we had to drive through an area where many foreign drivers are on the road, {a good chance of more great commentary}, so I announced that I would drive - oh yeah, a great idea, indeed!

Well, we were approaching the “foreign driver” area, we hadn’t been talking, I was tearing up, and he told me to pull over, because I couldn’t see to drive.  I did so, we switched places, and I proceeded to sob uncontrollably all the way to the chemo center.  It was like I had been saving the tears for weeks.  I just couldn’t stop and walked in with my blanket that Blair made me and my box of Kleenex, still crying and blowing my nose!  I’m sure that it wasn’t an unusual scene for them, but I was pathetic!  Terry had already apologized for being a jerk, but I was pathetic anyway.

I finally pulled myself together, and a very kind nurse, named Helen, introduced herself and took us up to the 2nd floor where there is a large room full of about 30 comfy recliners where we sit during our therapy.  I weighed in and she put the IV in my arm and drew blood, then started me on a drip of Benadryl to make me relax, Decadron and Aloxi to prevent nausea, and Ativan for anxiety {yes, I had some!}.  My red and white blood cells were within normal range and well as my platelets, so she began the drip of Rituxan (3-6 hours), Cytoxan, and Fludara.  

I must say, that it was a totally relaxing and comfortable situation.  Terry put my socks on, covered me up with Blair’s blanket, turned my IPOD on and I slept for several hours.  I told Terry that he didn’t need to stay with me; I felt very secure and was able to tolerate the drugs - one can cause some immediate side effects, but I sailed through without a problem, so there was no need for him to stay.  Blair showed up at 4:30 to take me home and I felt fine - no nausea or anything!  I can’t tell you how good that felt!

I had survived my first day of treatment!  Thank you, Lord!!!

The nurse did warn me that one of the drugs might give me a real boost of energy and she was right!  I was still on my computer at 3:00 a.m. {that’s really late for Jayme, the sleeper!}  My alarm was set for 5:30 and I really don’t know if I ever fell asleep.

Sunday, July 18, 2010

Church was great and I was thinking that I have so much to be thankful for - every day, but certainly in this situation.  I have created this little pep talk for myself, ‘cause I can get pretty dumpy sometimes!  I have shed a lot of tears, not so much in feeling sorry for myself, but because I’m hyper sensitive {I cried in Toy Story 3!}, I get fearful, I’m not talking enough, or I just get overwhelmed by what’s happening and have to just fall apart!  Anyway, some things I’m really thankful for:

• I am a believer in Jesus Christ; I’m a child of God and He is with me all the time - to talk to, to comfort me - He’s there for me.  I can’t even comprehend how much He loves me, but I am assured that He does.  He has time for me whenever I ask - I don’t just get a few seconds a week, so He can move onto someone else; He knows me better than I know myself - there’s no kidding there.  I do not understand how people can survive a major crisis without Him; I don’t want to!

• I have a very supportive family and some great friends who have offered to help do almost anything if we need the help  My husband is a wonderful caretaker, tireless breakfast maker and spoiler in many ways!  Our daughter, Blair, is my main cheerleader, great shopping buddy, and loves doing lunch or dinner; we have a great relationship.  Our sons, Chris and Britt, live at a distance with their families, and I feel very secure that they are supporting and praying for me in this new “venture”.

• My name is on many prayer lists - even as far away as Belgium!  Thank you!

• We don’t have children at home any longer, therefore, we don’t have to work around their needs or schedules.

• I have great Medical Insurance.

• I have a great doctor who came highly recommended {by God}

• I work at a school with a very compassionate principal and great staff that will fill in for me when I’m out for treatment.

• I have a cyber friend, Denise, the lady who told me about Dr. Vandermolen, and she's available for any questions I have and she speaks from experience.

Friday, July 15, 2010

We returned to Dr. Vandermolen for the results of the scans and bone marrow test.  Enlarged nodes were found in my neck, under both arms, in my chest, none in my groin and in 5-10% of my bone marrow.  He said that he would not call that leukemia, since it was such a small percentage.  I am considered Stage 4, and though this was not necessarily good news, we felt that it was the best news out of a potentially bad situation.

I’m enclosing part of an email that Blair sent out, because I thought that she did a particularly great job of explaining how he staged my cancer.  It’s one you can hear and easily forget, but “seeing” the explanation is much easier.  From Blair - 

*stage: she is stage 4, but let me explain...
most people think of the "stage" as the life sentence. it's not... maybe with breast cancer, or
other more serious cancers, but with lymphoma the stage is the way you qualify the location
of the cancer.

stage 1: in 1 lymph node
stage 2: in more than 1 lymph node on 1 side of diaphragm {upper or lower body}
stage 3: more than 1 lymph node & on both sides of diaphragm
stage 4: more than 1 lymph node & in another organ {spleen, bone marrow, lungs, etc.}

*while my mom is stage 4, she only has cancer in some of the lymph nodes in her upper body which makes her only stage 2, but they did find about 5-10% cancer in her bone marrow {while that's not much, it automatically makes her stage 4, even though it's not in her lower body lymph nodes}.

I have to say, that being caught in this “limbo” of not knowing what was coming was hard to handle.  I felt that when we received the results, we finally had something to work with and “the plan was coming together”!   I really do so much better knowing what I have to deal with and getting on with it than I do living in uncertainty.  Also taking one day at a time, instead of worrying a week or month in the future just works so much better for me.

i knew that I was going to have chemo on 3 week cycles and I was busy with my calendar trying to figure out how ‘I’ was going to be available at important times for school and if Terry would be able to attend a really important industrial show in Chicago.  It turned out that God had it all planned - not to worry!  It’s hard to let go of things that you’re normally responsible for and school is such a part of who I am, that it was a huge concern for me.  Letting this stuff go isn’t easy!

Wednesday, July 14, 2010

I returned to OCOH and had PET/CT scans all done by one machine, which is apparently state of the art and only one of a few in Southern CA.  Piece of cake!

Monday, July 12, 2010

     Today was my first appointment with a specialist (the first of 3).  I was a little nervous - stomach was a little flippy, but knew that this was the first day on my road to recovery.  I feel that God had been instrumental in me seeing Dr. Vandermolen as the doors opened so quickly under sort of unusual circumstances.

When we found out about my situation, Blair mentioned my lymphoma to some friends at work to see if they would put my name on their prayer lists at their churches.A young woman named Ali overheard the conversation and told Blair that her mom had lymphoma and had been in remission for 5 years - said she was willing to talk to anyone about her experience and was sure she would refer me to her doctor, who she thought was terrific!

Though I still have not met Denise in person, we have talked and texted and I called her doctor right away.  She was such an emotional boost for me, just to talk to someone who sounded so encouraging and she had been there!

Terry, Blair and I met Dr. Vandermolen at Orange Coast Oncology and Hematology {by Hoag} at 5:00 p.m.  He spent lots of time explaining his approach to my case based on the results from the biopsy and answered questions that we had at that point.  I have non-Hodgkins Lymphoma which is slow-growing and while I may have it for the rest of my life, the treatment is highly successful.  He examined me and found enlarged lymph nodes in my neck, under my arms, and in my right groin, but the CT/PET scans and bone marrow test would prove conclusive. 

The 3 of us were unanimous that we wanted him as my physician, so I had a bone marrow test and we were on our way!  I cancelled the appointments with the other 2 doctors.

Sunday, July 11, 2010

We saw Sam Parsons and his wife, Colleen, at church yesterday.  Pastor Rod was on vacation so Sam gave the sermon and led worship.  We enjoy him so much and admire their faith in trusting in God to support their ministry to nursing homes.  He’s a former bar singer, with guitar, who started singing for the Lord when he got saved.  They’ve raised their kids and put them through college without a “paycheck”.  Pretty amazing!  They were very uplifting and fun to talk and pray with and suggested that writing a blog would be both helpful to me and to others who might care to follow my progression toward wellness.

That evening, John and Susie, our neighbors next door had us and Blair (whose husband was out of town) over for a great dinner out on their patio. Afterwards, we sat around their fire pit - it was the perfect night and we came home smelling like a bonfire!