A New Me... Minus one Lung

Hi everyone...let me fill you in with what has been happening since I came home.  First I thought it would be much easier to do things, to sit and read or knit or be on my new tablet.  Well, that has NOT been the case at all.  I am really tired and tend to sleep a lot.  Scott says he cannot believe how long it is taking me to finish this book I am reading, normally I can whip those out in no time.  But post surgery every time I pick up the book I fall asleep!  ha ha!!

I came home Thursday night and discovered that I could not move on my own.  I could NOT get off the couch by myself.  I certainly could not lay down by myself and NO WAY could I get myself out of bed.  I seriously felt like a beached whale and I did NOT like that feeling of helplessness at all.  Halfway through the night, I grabbed my pillows, water, etc and headed for the couch.  I could prop myself up with the armrest and be half sitting/half laying on my 'good side'.  And then it was manageable.  Friday night we decided to try propping me up in bed, so gathered all the extra pillows in the house and I had 5 of them under or around or on me!  That did the trick!  I could sleep in bed!  Yeah!

Saturday I woke with a bit of a headache and throughout the day it just kept getting worse.   I took several naps and even after sleeping for several hours, I still had that pounding headache and it was beginning to make me sick to my stomach...and I did make a dash to the kitchen sink and threw up some water and I knew instantly I did NOT want to do that again!  By the time we were going to bed my blood pressure was quite high and Scott did not like that, so he called the surgeon's office to talk to someone,  they suggested going to the ER to have my blood pressure checked out, they did not think it was related to the surgery itself.  So we were in the ER until 4 in the morning and they helped get the headache pain under control through an IV.  They were so kind and so helpful at Meridian Park Hospital.  They weren't sure, but thought the headache caused the high blood pressure.  The ER doctor checked with an anesthesiologist up in the birthing center and thought the headache may be a result of the epidural I had for the surgery.  After several hours of an IV with the great drug dilaudid  we managed to get the head pain under control...I did throw up at the hospital and let me tell you that was NOT a fun experience...as much as I tried hugging my sides, it just was very painful.  Scott and I both came home and crashed into bed and slept away the morning.

A dear friend brought communion to me, so I was able to hear the gospel and receive Our Lord.  We had a nice visit.  Then I took another nap in time to receive two more guests...my girl friends from high school.  I must show you what they brought for me:

Silky Zebra Print Pillowcases!!  How awesome are those (there are two of them!), an angel night light from IKEA!  LOVE it!, candy, books and an awesome, hand made purse/bag with zebra print and two pockets in the front!  I tell you, I am so blessed to have such wonderful friends who take care of me!  And zebra print...now didn't I pick the right kind of cancer...so trendy right now!  ha ha!



After they left I slept for a couple more hours and then watched a little TV with Scott, but we both were ready for bed by 8:30 Sunday night.  Monday morning I woke feeling okay...no headache....had a bite to eat so I could take my pills and then amazingly enough I fell asleep on the couch for two more hours and when I woke, I had the headache again.. GRRR...the doctor's office said it was okay to take more oxycodone to get the pain under control...so I did that, went back to bed and slept soundly for three more hours.  And when I woke, I felt really good.  In fact, I did not take any more pain pills the rest of the day, not until I was going to bed did I decide I should take something to make sure I stay on top of the pain.

And that is where I am now...each day is getting a little better.  A little less pain in the surgical area...I have a 2.5 inch incision on the left side of my back where they pulled out the lung.  I have two other small circle like incisions ...one on my side and the other under my left breast...I will be so happy to be able to sleep on my "other side".  For now...no driving until the 12 of December when I will get the stitches out...no lifting of 10 pounds or more for 6 weeks...so a fairly decent recovery time.  And I use the breathing apparatus to build my lung capacity and each day it is getting better.  Prior to the surgery I had a pulmonary function test and I scored 112%...so with 20% of my lung gone now, it still puts me at 92 %...so I feel like that can be quite doable for me...after all, I do not run marathons!  I don't think I will miss this lung too much, of course I wish I did not have to have it removed, this has not been a pleasant experience, but a necessary one...just hope I don't get another one of those carcinoid tumors someplace else.

Now let me give you an update on Dina.  She is halfway through her chemo and gosh darn that girl looks so good it is unbelievable!  She is getting the white cell booster shot every time after her chemo now and it is causing some bone aches for about a week.  She still has not gotten "sick"...yes she gets very tired and always nauseous after her chemo, but it has not kept the girl down...she still keeps going and going.  I think she takes after my mom and even me (I hope)...if we can do for ourselves, it is best for our psyche to do so, it really makes us feel better to get up and be "normal" or as normal as we can be.  We just need to know when to slow down and take care of ourselves.  For now, Dina is going to basketball games for Ellie, taking Ellie to volleyball practices, and thankfully Lily gets to walk out the door to the backyard "Barn" and have her VB practice.  Actually Ellie has one night a week of practice in The Barn also.

The timing for her chemo is really working out for the Christmas celebrations.  Her next one will be Dec. 14 so that means by the time Christmas Eve and day rolls around, she should be feeling pretty good.  Her fifth infusion will be Jan. 4 and finally her last one is scheduled for Jan 25.  Of course all of this will be checked with more PET scans and CT scans and blood work.  Also she will be having another bone marrow biopsy about 8 weeks after her final treatment...those results will determine if indeed she can be done or if she needs further treatment.  So continue with the prayers "lifting her up" to the Lord that she may be done with this journey and go out and become a testament to the Power of Prayer.  We thank you all so much for the prayers and good wishes. 

Thank you for walking beside us on this journey.  Every day we are shown the love and support from YOU, our dear friends and family!  Thank you for supporting us and thank you to all who are a part of Team Dina...be sure to take a picture of yourself wearing the Team Dina gear and send it to me or even Dina...we are going to make a BIG poster with all her supporters...You all are loved so much!

So.. I'm sleeping ALOT!!  If you didn't get the marvelous humor involved, it was Scott posting yesterday's blog.  One thing about ICU is that they wake you up every hour to make sure you haven't died!  With all the monitors I'm hooked up to, you'd think they'd know how I'm doing. Although I had no trouble dropping back to sleep, it was still a long, long night.
I want to thank all of you for your prayers and good wishes.  It means a lot to me.
I'm in a regular room now.  Hopefully, I can get the drainage tubes out in a couple of days and then the pain should be more manageable.  I'm thinking I can come home maybe on Friday if all goes well.

 

If it was really me, I'd say "Ohhhhhhh". I am out of surgery and everything went fine.  The tumor is gone and there is no sign of cancer in any of the bronchial margins. (Now you know it isn't me!) I mean they didn't find any cancer anywhere else in the lung area.

I'm pretty groggy on morphine because my shoulder hurts - 9 out of 10 on the pain scale!

Scott was here, but he fell asleep in his chair and when I woke up he was gone to lunch.  I have a feeling he'll be back in about 45 minutes to check on me.  I told him to email about a thousand people, so he's probably working on that.  (insert ghostwriter's wink`)

Anyway, I'll update you all later when I'm conscious.

Hello people...the SURFACE is now mine

He did it!!  I am now the proud owner of the new Microsoft Surface!  It will be  a learning curve for me, but I am actually sitting in the Home Depot parking lot on Black Friday while Scott ran in to get some special light bulbs.  We pulled in to the lot and he said, "WHAT is GOING ON?"  I replied, "It is Black Friday!"  OMG...

So I thought I would take the time to get aquainted with this new toy!  And since I plan to post some news while I am in the hospital, I just thought I would give it a try right now.  I managed to call it up and get it working...So first HIGH five for me!!

I also managed to download the bible here!  Second HIGH five for me!

And also a Daily devotional...okay I am on a roll!!

Now I have to figure out how to download some books to read!  I downloaded the kindle on here...now I have to find a place for FREE books and get it working!

When Scott gets back in the car we are on our way to St. Vincents for my pre-admission testing...xray, blood work etc.  Then I will be all set for Monday morning. 

Okay..funny story.  Scott just got in the car, drenched...he has been out in the parking  lot looking for "his" car and we drove "my car"...ha ha..

Okay so now we are off in this pouring down rain to the hospital...so I will sign off and check in later...


Hope you all had a wonderful Thanksgiving!
Blessings,  Col

News Flash...Fantastic News!!

Dina's oncologist left a voice mail on her phone this morning with a report concerning her PET and CT scan from last Friday.  It was ABSOLUTELY THE BEST NEWS EVER!  He said that ALL infected areas on her body were dramatically reduced in size...and he even went on to say:  you are not in remisssion (WHAT?  He is actually speaking the "remission" word after only two treatments??  Holy Moly!!) but he is so impressed with the results and they are right on target and will continue the treatments.  He will show her the PET scan tomorrow when she sees him...

WE ARE OVER THE MOON EXCITED about this report.  Wow!  Our/Your prayers are being answered BIG TIME!  Thank you Lord.  Our God is an AWESOME God!

Again, we couldn't make this journey without our Lord and without the support and love from all of your - your prayers have kept us lifted up to give Him praise and glory.  You have shown us Christ through your actions and love for Dina.  God bless you all!

Just wanted to add a picture here...Ellie chose not to cut her hair, but she wanted some purple streaks to show her support...so after she had her hair done, Dina donned her purple wig and we gathered the other two and took a picture...I know, Jalen is kind of goofy, but then he is a goofy boy!

A Thanksgiving to Remember

So many things for which to be grateful...our family...our friends...our community...our church community...our health.

That might seem strange to say "our health"...but truly, this road that we are traveling...the "C"ancer road has brought so much into our lives I am not sure we would have wanted to miss this journey.  Now I really need to speak more from a "mom's" perspective...not one who also has cancer.  To see the love and support of friends and some that were not friends but just acquaintances before and surely are now friends, is truly a Gift from God.  All of these friends have been brought into our lives for a reason and we feel that our lives have been enriched by this whole experience.  No other way to explain it other than Dina has so many angels in her life and I know she is overwhelmed with the love and support shown to her and truly amazed by the generosity of these friends.  This experience is one that will change all of our lives...and it can only be for the better.  We can now look forward to "paying it forward" ...and with clearer eyes of what this really means.  We now know what it means to give from the heart and to keep giving and giving...with a new spirit of gratefulness, love and compassion.

We celebrated our Thanksgiving this last Sunday, the 18th...most of you know that we always celebrate it on a day other than the Thursday holiday.  For us, it is a time to gather together...not just about the day.  We are of course thankful and grateful for all the blessings in our life.  And a tremendous blessing is still having my own father here to celebrate the day with us...91 years old! 

I always say I am going to get a picture as soon as everyone gets to the house, and somehow, I always forget...and then after dinner and dessert and story time ends, everyone is ready to leave...OH NO!  We have to get a group shot first...well, I didn't get everyone in the picture...Ellie took the picture, Caleb was in the shower because Jamie gave him a haircut and I don't know where Jalen was, but he was MIA!  So here is everyone else for our Thanksgiving group picture...

November 2 and the Second Chemo Treatment

The second chemo has come and gone and Dina is holding up really well.  She had a pretty "yucky" (her words) weekend...just feeling nauseous all day and very tired.  But good news, before the chemo began the doctor examined her and he could NOT feel her spleen!  We feel so optimistic with that report...we feel the lymphoma must be shrinking!!  We will know more on November 16 when she will have another PET Scan...and we are praying for a lot more "gray" areas (that is how "normal" should look) because every thing was BLACK on her first PET Scan!

Monday morning she was back in the doctor's office for her trial drug infusion..that just takes a couple of hours versus the 5 for the regular chemo.  She mentioned feeling very nauseous, so they added a different kind of anti nausea to her IV and it worked like a charm.  So now she has a new anti nauseous pill to take that seems to be working better for her.  On Tuesday she had to go back in again for a white cell booster shot.  Her blood count was low on Friday when she had her chemo and they wanted to boost her white count.  She was told to take some Claratin the day before and the day of and also the day after the shot...for some reason that allergy medicine helps with the side effect of the booster shot, which is sore bones for 24 - 48 hours.  Today the girls and I went to the Olive Garden for a lite lunch and Dina was feeling good, but her bones were sensitive to touch...they didn't really ache like she imagined they would (similar to aches when one has the flu) but when Jalen went to give her a hug and put his arms around her, it hurt.  However...it only lasts up to 48 hours, so I think she will be feeling better soon.

Some friends offered their beach condo to them, so Jamie and Dina are taking off tomorrow for the beach for two days.  The beach has always been Dina's favorite place to go (not so much for Jamie...but he is willing to do anything for his wife...even go to the beach!...I have to add that during this time of the year there is probably NOT much chance of getting sand every where...they will be lucky if they can walk on the beach, but even watching the waves and hearing the sound of the surf can be quite soothing).  Friends are keeping the girls over night and help get them to school and their various activities.  I am going to have the J-man!  He asked if he was going to be sleeping with me and Papa and I told him, "no, I think you and I will sleep in the guest room".  And he replied, "why don't we kick Papa out and make him go to the guest room."  That boy is too quick!  And yeah, that is NOT going to happen!!  I am glad that Dina and Jamie can get away for a few days without the children...they have been great, but let's admit they are kids and they can still be little stinkers and NOT the best listeners...so a few days of peace and quiet to rejuvenate their bodies, souls and minds will be just what they need!  Then they can come back to the chaos!  ha ha

Just added this picture from the beach sent to me from their phone

So this is the report for now...pretty good I would say!  And the doctor thought that Dina would continue to feel this same way, but get a lot more fatigued as the weeks progress.  He thinks she will not be feeling any more sick to her stomach than she does now, but just get more and more tired.  We can live with tired, right?

Her next Chemo is on Friday, November 23...I will be going to St. Vincents for my pre-op "stuff"...blood work, xrays etc. I have to be back at St. Vincents on Monday morning bright and early at 5:30 am and right now I am the first on the schedule for a 7:30 surgery although I was told I could be bumped...So I will write up something after that chemo.  We decided to have our Thanksgiving on the 18th before all the procedures take place.  We usually celebrate our family Thanksgiving on the Sunday after the holiday (that gives my girls a chance to go every year to their spouses side of the family) and we get to have our parents...which now is only my dad, but he can come every year because we celebrate it on a different day!

Dina and I want to thank all of you who are sending cards and prayers our way...with the good news from the doctor about the spleen reduction in size, we feel God is listening and answering our and YOUR prayers!  Thank you all for your continued and persistent prayers for us!  We love and cherish all of you and everything you are doing for us!  God bless you all!