update

Wow, I looked at my blog and saw that it was two weeks since my last post.  How did that happen?  I am so sorry people for leaving you all 'hanging' like that...you are probably wondering how we are all doing here.

I will fill you in with Dina first.  She had her fourth chemo treatment on Friday Dec. 14.  She was told very early in this process that each treatment will bring a longer recovery time and her fatigue will increase.  HAH!  They were right!  I think what hurts the most for her is her bones...they all just ache.  Yesterday she spent most of the day in bed.  She is anemic and we have been told that is the reason for the bone pain.  The doctor is watching it closely and right now even though she is anemic, the level has not gone to the point of requiring a blood transfusion.  She continues to receive her blood booster shot.  So what is wrong with staying in bed, all snugly warm among flannel blankets and soft down pillows with a TV in the room and maybe a good book too?  NOTHING!  As long as the kiddos are all in school!  ha ha...otherwise I think they would all be in bed with her...and trust me, that wouldn't be as relaxing!

I am praying she will be back to her new 'normal' by the holiday.  Oh and she should be having one more CT scan here in another week...we are so anxious to hear the report from that...we pray that even more of the cancer will be eliminated from her body...wouldn't that be the best Christmas gift EVER?  I will definitely post a report once we get the news...so stay tuned!

Now about me...I don't think one can even imagine all the parts of the body that is effected when one takes out a little old lobe of lung!  The whole left upper back feels so 'numb' yet at the same time it aches and is very uncomfortable...standing for any time puts a lot of pressure on the back...at least that is what it feels like.  It feels like the whole left side is hard, like the muscle has gone into spasm...And I don't know, maybe that is what is happening.  The nerves are all very extra sensitive...not only in the back, but right around to the breast bone in the front.  Now, please don't take this as "whining"...I'm really not!  I guess I just want to keep this real and document how this is feeling to me.  Because we know the saying:  You don't remember pain!  Well, you can maybe recall the pain, but you cannot relive it....that is what I always heard about having babies...(for some).  And that is a good thing - to not remember the pain!  So getting back to what I feel - lots of tingling in a not very comfortable way.  Lots of pressure in the back and around to the front...Scott will catch me with my hand over my left breast...I don't know why, I cause I feel if I apply pressure it will ease off a bit, it seems the bones just ache around there..Well, of course you know they had this four inch tube separating my ribs to get to the lung and so I imagine lots of things are trying to heal inside there...lots of damage to the nerve endings.

Okay, enough of that, how about some good news!  I saw the oncologist on Monday and the biopsy results showed NO other diseases in the area...!!!  So they got it all!  We can all do a happy dance and Praise the Lord!  I will have some follow up CT scans in the years to follow...this type of cancer is very slow growing, so I imagine even if another one did pop up, it would take a while to actually show up.  And just to remind you all, it was a low-grade cancer tumor, however after the lung biopsy, it was raised to a higher level within the low grade spectrum.  And it is also a more rare form...so we will just watch it.  The doctor said it could be 6 months or more before I actually feel like I can do what I did before...but I think I will try a few minutes on the illiptical...just to get my lungs working, you know!

I did have one set back in that I developed a nasty urinary infection...that has kept me laying around even more...the whole tummy feels yucky and maybe a little low grade fever...And you know me...offering it up to the Lord.  He is my Comforter and Healer...I give it all to Him!  So today is a new day...I always seem to wake early (sometimes way to early) and I just need to get out of bed and sit up and move around a bit.  I am so looking forward to laying on my right side.  Actually I have a funny story to tell...yesterday morning I was up early...like 4am...I read a bit on the couch, sat up and then finally around 7 decided I could go back to bed and catch a few more winks.  I so desperately wanted to lay on my 'bad side'...so I gently went from my back ever so slowly towards my left side...now I was not completely on my side...no way could I do that...but just a little bit.  Oh...heaven, felt so good to lay my head on the pillow with my left ear!  (do you know how tired my 'right ear' gets from laying on it all day long?  ha...trust me, it is getting annoyed!!).  And I immediately fell asleep, for maybe 40 minutes.  I woke up and tried to go to my back and I couldn't move!  Just shifting my right shoulder to slowly lay me on my back caused great pain...I was once again a "beached whale" on my side!  I think I must have moaned because Scott was right there to help me sit up and adjust myself.  Okay, I tried, I guess I will have to wait a while longer to lay on my missing lung side!

That's it for me my dear family and friends.  I am just taking one day at a time...trying to do little things, like walk a bit...Scott makes sure I get out...you know we always have to run to Home Depot...sometimes I get out and walk in the store (which BTW really poops me out!) and sometimes I just sit in the car...I do like getting out for the fresh air and being a part of the world.

If I don't post before Christmas, I do want to wish you all a very blessed one...one filled with joy and love.  Treasure each other...don't take anyone or anything for granted...cherish time spent with your loved ones.  My Christmas cards will be sent out, although they may be a bit late in the coming!

Thank you for your continued prayers!

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!

Caring and Supporting Sister

There are not many sisters or friends who would be willing to shave their hair so their loved one would not be walking this journey alone.  I am so proud of Lacey for doing this for her sister.  She had told Dina from the very beginning: "when you lose your hair, I will lose mine too!"  We all thought:  "Gosh, Lace then everyone is going to think you have cancer!"  It didn't matter to Lacey, she just wanted to show her support and love...and gosh darn, I think they are so beautiful with hair, without hair...inside and outside.  And even Lacey's husband and her son, Caleb (13) shaved their heads!  And when Caleb was at school the next day and someone asked why he did that, he told them it was because his aunt has cancer and is losing her hair...!  I think I have the best family ever!  (I must interject here, that little Addie (5 yrs) was very ADAMANT about NOT cutting her hair!  And Tristan cried, "NO Mommy").

So the girls and I went "hat shopping" and we found some cute ones, warm ones and soft ones...you know without hair, some hats can get pretty itchy on the head!  And Dina even decided to get some eye shadow in colors to match her very colorful wigs...she again said, "Well, when I lose my eyebrows and eyelashes, I may as well have color on my face...why not purple eye shadow!!"  So she bought four colors!  Now she will most likely NOT be wearing the red, purple, or pink wig to church, but you may see her around town...and definitely on Halloween.  Oh and if you are around Meridian Park Hospital on Friday, she is wearing the pink one for her chemo treatment...yeah she is going to surprise the doctor for sure!

We are so happy that she is losing her hair...I know that is a strange comment, but like I wrote earlier, it means the drugs are working and that is a very good thing... and it is just Hair....it grows back...now I wonder if I should even put this in writing:  do you think it will come back in her normal color?  do you think it may come back curly?  I have read some different things about returning hair...she might have kinky white...oh that would really throw her for a loop!!

I just want to thank everyone again for all the love, support, prayers and Masses that are being offered for both Dina and me.  We feel so incredibly blessed to be living in a community that is there for someone in crisis.  We love you all.  God bless you!

For with God all things are possible...!!  AMEN!

Wigs, Wigs and More wigs!!

Lacey, donning the purple wig!

Dina decided to have fun since she needs some wigs...so she went with purple, red and pink!!  A friend had given her a natural color wig...it is one that is meant to be worn with a hat...it is short...just below her ears, but looks really cute on...

Lily knew from the beginning she was going to shave her hair when "Mommy lost hers"...no question about it!

Dina wearing a very cute knit hat that Linda P sent to her!

 We had a shaving head festivity on Monday night...Lacey, Aaron, Caleb, and Lily all joined her mommy with shaved heads (Jamie and Jalen already have the shaved heads!)  More pictures to come of the others, but wanted to get these posted right away!.

Step 2 of the Chemo Hair loss...

I wrote on Saturday night that her hair was starting to fall out.  Last night, Sunday, she knew it would be bad when she needed to take a shower and wash her hair...and it was...as soon as the water came down on her head, the hair just fell away...

So the whole family "helped" with the remaining hair...first they cut it short, then they all took turns shaving it...She has a few nicks from our little buddy...but all is good...even at this length, if she runs her hand over her head, the little snippets that are left fall out too. 

But Glory Be...doesn't that girl look BEAUTIFUL?  Yes, she still has that stunning smile and how can one go wrong with a positive attitude like that?  She did not want to be in the picture by herself, so she insisted Jamie be with her...what a cute couple!!  They are strong, but together they are unstoppable...I have no doubt that the Lord has great plans for them...and it is for Dina to make a difference in many people's lives!

Today we are going to look at the wig again and see how she feels about it now that the hair is gone...

Maybe my next post will be with the wig!!

The Chemo Drugs are working....

9:22 PM October 27 I receive a text from Dina...actually it was a picture with a sad face...

So I will insert my own sad face here too..Seeing the evidence here is heartbreaking,  but as sad as this makes us, knowing the drug is working brings hope and joy to us.  I immediately called her...she said she was just brushing her hair before bed and it was easily just coming out...she could run her fingers through her hair and it would be in her hands.  She had to stop herself from raking her fingers through her hair.  We talked about what her pillow will look like in the morning.  She said you can't really tell that she lost the hair, no bald spots...just kind of all over...we will see what the morning will bring.

The reality is hitting us and this is only the first wave...her first treatment of chemo did bring nausea and lots of sleepless nights along with tiredness...But during the first 17 days she did not have any vomiting only nausea and being tired...her sacrum is not even hurting her as much, although she paces herself so she is not standing or walking a lot to make it ache.  Now we have the beginning of the hair loss.  In six days she will have her second treatment of chemo.  The doctor said that as the treatments progress the fatigue will be stronger and there will be less "good" days between the treatments...one down, five to go!  We CAN DO THIS!  (Do you like how I say "we"....I know, we are all supporting her and feeling her pain...we cry right along with her...but these tears are tears of joy for the end result of wiping out the cancer!)

But we have to remember that this hair loss is a GOOD sign...it means that the drugs are working...it is killing off all those bad cells and obviously it has to get some of the good ones too...but we can sacrifice a few good cells (like hair cells...is that what they are?)  for eliminating all the bad ones.  That is our goal, right?  And hair just grows back, right?  So we are staying positive and looking at the end results here!

I suppose my next picture will be one with NO hair...and maybe a wig...???  maybe a hat? ... maybe a scarf?..whatever she wants!

Thank you for your continued prayers, we appreciate everyone imploring our Lord to heal Dina.  And to give her strength to conquer this battle.

I just discovered that November is Carcinoid Cancer awareness month...now how ironic is that?  And September was Lymphoma awareness month...the month she was first diagnosed.  Oh, and the colors for carcinoid cancer?  Zebra color!  Yes, we ordered some zebra print wristbands that say:  No one fights alone!  Were you even aware there is a color for every kind of cancer?  Pretty amazing...I think we all just know the PINK so well for the breast cancer...but all cancers have a color...pretty cool!

The Surgery is on the Calendar!

I saw the surgeon today and learned that the whole lower lobe of my left lung will need to be removed..  The left lung has two lobes, the right lung has three lobes...the tumor is in the middle of the lower left lobe, so the whole thing needs to be removed.  I certainly didn't like hearing the procedure but it seems he will have to cut both the vein and the artery that comes from the heart to the lung and staple the ends...they will no longer be in use.  Then he will have to take the airway from the lower lobe and connect it to the upper lobe!!  Gives me the shakes just thinking about this!!  (So my question is this:  about the vein and artery with the staples at the end...are they just hanging there?...just wondering about that now...of course I didn't think of it at the time to ask the doctor.....)

The surgery is scheduled for Monday November 26 at 7:30 AM...at St. Vincent's in Portland, they have blocked three hours for the surgery and the hospital stay is 5 - 7 days!  I will have three incisions and he will have to 'spread' my ribs apart (not crack or break them) and because the ribs have nerve endings, I most likely will have pain radiate out from those incisions.  Sounds like a piece of cake, right?

But I am ready to move forward and both Scott and I really liked this doctor and have a lot of confidence in him...he is Italian, after all!!

Dina news:  you know the saying:  "No news is good news" and that is what I am going to report...although I guess I am telling you that there really is no news...for the most part she is feeling pretty good...she is trying to lay low as she has had a sore throat for the last two days.  She is already on antibiotics, so it most likely is just a virus, but she is keeping a close eye on her body and how she is feeling...and YES she has a very good thermometer and knows to call the doctor ASAP if she runs a fever.

She said yesterday that her scalp felt tingly...we are wondering if this is something that happens prior to the beginning of hair loss...she has her next treatment next Friday, Nov. 2...and so far she has no hair loss!

So that is the news from here for now...I guess I won't have any more news about me until December...but I will continue to keep you informed about Dina right up until I go into the hospital...hmmm, do you think I should get an Ipad to take with me to the hospital...kind of like a 'surgery gift'???  hint hint...anyone reading this???   

The Good News...

I will not keep you in suspense any longer, although I do have a story to tell (have you ever known me not to tell stories?)  but I am going to cut to the chase with the news that you all are waiting for:  NO OTHER DISEASE DETECTED IN MY BODY!   Good news, right?  So we are all celebrating that news.

Now for my story:  I was taken to a back room and placed in a comfy chair with my feet up.  The the technician put in a little IV for me as I was getting a die and a little more radioactive medicine to help with the scanning...low lights, quiet...no phone, no texting, just relaxing.  So I close my eyes for the 45 minutes of quiet and begin saying the rosary...a very nice way to pass the time and reflect...sometimes I admit to my mind wandering, but it is all good!

Finally the 45 minutes is up and I am taken into the scanning room.  I lay on a narrow bed of sorts and I must keep my arms above my head, except this time, there was a foam pillow that had sides and it pressed my arms into the side of my head (no wiggle room, if you know what I mean)...now I am NOT claustrophobic, so I knew I would not have a problem with that, besides, I just keep my eyes closed anyway and decided to say another rosary.  Is it my 62 year old body or what, but with my arms above my head I get a lot of pain in my shoulders...Oh, Lordy, I was thinking to myself that I would have to call out to the technician for a break, I really didn't want to...but my shoulders were killing me  and I could feel the tension in my neck and was so afraid of getting a tension headache.  So of course my mind immediately went to the Lord...What did He do for me?  How did He suffer?  Yes...NAILED to the cross...arms outstretched...OMG, can it be any worse for Him?  Yes, he suffered the most and all for me.  So I offer up my pain to Him and asked Him to give me strength to finish this session (now, according to my calculation...I was on the fourth decade of the rosary, so that should have put me at about 20 minutes or so into my scanning and it was suppose to last 30 minutes).  HELP me Lord to be strong...I give this pain to you...and just when I think I can no longer handle it, the technician comes up to the side and says, "Okay we are all done!"  Oh THANK YOU, Lord!!  YES!!

The technician had to slowly lower each arm from above my head down to my side.  BUT I survived and He was with me through it all and He helped me when I called out to Him!

And that is my story...do you ever offer up your pain to God?  Try it sometime...it really does help.  I do it at times when I have the flu and just ache so bad...all of a sudden it is not so bad...I take a deep breathe and offer up my pain and suffering to the Lord, remembering all that He went through for me.  And all of a sudden a calmness and peacefulness radiates from me and I do feel better...it may only last a few seconds or moments...but it is Him responding to my call.

Dina had a pretty good week I would say...some nausea moments...but she has pills for that and once they kick in, she feels better.  She is off the 100 mg. of prednisone now, so she is sleeping a little better and not feeling like she is coming out of her skin.  She is learning to pace herself and not do too much because it does tire her out.  Her two best friends from Seattle, Emily and Jenni came down for the weekend to spend some time with her...on Saturday Jenni went with Dina to Ellie and Lily's volleyball games.  I took Jalen to his soccer game.  Then we all met up at Wells Wigs in Tigard to try on some wig, Lacey joined us too....Dina is not sure about the whole wig thing, but we will see how she feels when her hair actually falls out.  All the girls got into the act and put on synthetic wigs...except they went totally out of their normal color and style...I will post some pictures when Jenni sends them to me...All in all, she had a great weekend and of course feels so blessed to have such tremendous friends who make a point to come down and spend time with her and laugh with her...She is truly blessed!

The next news will be on Wednesday when I see the thoracic surgeon and we can get on his surgery schedule...and I will know more about the location of this tumor in relation to other body parts and how easy or hard it is going to be to get to it to remove it.  Dina's next infusion is November 2...the doctor thought she would be losing her hair by that time or within the next week...we will see if she is going to be a miracle chemo girl and NOT lose her hair...so until later...thanks for all your support and prayers.  They are truly lifting us up and filling us with your love and the love of Our Lord.  God bless you all!

Before I go...I thought I would post a picture from Thursday, October 18....that was my Dad's 91st birthday and he came over to my house for lunch.  I made roasted Tomato Basil Soup and grilled cheese sandwiches.  We did not have the whole family, most of the kiddos were in school, but whoever was around, we gathered and sang to him and shared a birthday meal.  What a blessing to have him still be with us and doing so well.  He is very concerned about Dina and me...he makes us oatmeal and muffins and other goodies that he thinks is healthy for us...He is great!  And do you see the T-shirt he is wearing?  It is the Team Dina shirt...It says:  Fight Like a Girl and team Dina is on the ribbon.  If you would like to get a Team Dina  T-shirt or sweatshirt, you can go HERE to Home Town Sports, click on "Spirit Wear" and scroll down to the near bottom where it says Team Dina and the password is "believe"...Her friends are planning a BIG GROUP Picture on Monday, Oct. 29 at Stafford Grade School, 5 pm on the playground (and the covered area if it is raining), so please join us if you have a Team Dina shirt or just a purple shirt to support Dina's battle with cancer!

CHEMO - First Treatment

Friday morning, October 12...getting packed up and ready to leave for her first Chemo treatment.  Thankfully it is at the local hospital campus...in her(ours) doctor's office...so very close by!  She packed her pillow, a soft blanket, her laptop, an I-Pad from FIL with movies downloaded, books, magazines, bible, pills...and other miscellaneous things.  She is very positive and very ready to get started on this treatment.

Scott and I brought lunch for her and Jamie, first we had to stop and get a prescription from the pharmacy for her.  Jamie and Scott went to the cafeteria to eat their lunch and I sat with Dina and shared an Avocado Delight sandwich...she ate all of hers, and chips and even a donut!  The room was pretty packed when we arrived, but after even 30 minutes others were done with their treatment and the chairs were opening up.

Lacey came after we left...she had a haircut appointment and she cut her hair like Dina's.  The word is that by her next treatment (which is in three weeks - Nov 2) Dina will start to lose her hair.  Lacey's plan is to shave her hair too in support of her sister!  I told Lace that everyone will think she is going through chemo also!!  Do you see Lacey's sweatshirt?  FIGHT LIKE A GIRL  ... and the part you can't see is the ribbon symbol for all cancer...on the one side of the ribbon it reads:  TEAM DINA.  It is all from a local sporting goods store called Home Town Sports in Willamette.  The sweatshirts are $24 and the T's are $12 and all the proceeds are going to the Snook family.  Dina says she plans to donate it to the leukemia foundation.  This morning a friend sent Dina a picture of a Dad out on the soccer field with his little 5 year old son and he was wearing the Team Dina T-shirt!!  How awesome is that?

This morning Dina asked if I would come make breakfast for Jalen and Lily...SURE!  She woke at 3:30 AM and couldn't go back to sleep.  The doctor warned her of this reaction because she is taking 100 mg of prednisone for 5 days (she will do this for every treatment) and it will make her wired!  But...it is better than being sick and vomitting, right? And we must admit that she was beginning to get what we always said to my mom:  "chipmunk cheeks"!!  Not too pronounced...YET...but just a little puffy.  Probably when she starts to lose the water retention it will be time for another treatment!  Again, a small price to pay for one's life, right?

So, Day 1 of treatment is behind her, she is not sick, she is tired, but she is still staying very positive and taking each day at a time...!!  The first treatment took almost 7 hours...others will be closer to 5 hours.

I will just give a quick update about me...I really don't know a lot yet, just know that I will have a PET scan next Wednesday the 17th, and the following Wednesday the 24th I will be seeing the thoracic surgeon.  Then I will know more about how we will proceed with this tumor on my lung and when we can schedule to have the surgery to remove it.

Again, thank you ALL for your continued prayers as Dina struggles with daily life, three children, two pets, a husband (who btw is very supportive and right beside her every step of the way) and now this chemo...She has a whole village to support her and help her...I asked her if she imagined little "ninja's" inside her battling these cancer cells.  She told me she imagined having pink boxing gloves on (she received a card from a friend with pink boxing gloves - to FIGHT this cancer) and hitting each cell in her spleen, in her back, in her neck...pretty much everywhere in her body...the visualization is really helpful.  So the ATTACK is on and she is up and FIGHTING!  So proud of her!  So love her!

Pictures

Cards that have been sent to Dina...so far!!

Lunch at La Provence in Lake Oswego

Oct. 7 boat ride on Oswego Lake

Pre-haircut pics of the two beauties

Dina and friend Kari who cut her hair

Dina with Prayer Shawl I knit for her...she takes it with her for tests and soon chemo!

My diagnosis

First I am going to tell you about Dina.  She had her hair cut on Tuesday...just shoulder length, but it looks so cute.  Scott says it makes her look younger!  She was surprised to hear that!  Her bone marrow biopsy came back positive for the lymphoma in her bone.  The doctor said he was not surprised as it was quite hard to get the "drill" into the marrow...it was "packed with lymphoma"....he also said not to worry about that, it does not change the game plan at all.  Okay, but I could see her face and it was a let down to know that it has truly invaded her bone.  But we already did know that the lesion was eroding the bone, so it makes sense that it has taken up residence in there.  If her back didn't hurt so much, she really would not know that she is filled with lymphoma throughout her body!

She and Jamie had a date night last night.  Teale, my niece came over to be with the children.  Dina wanted to have a night out with Jamie before all the chemo starts (THIS FRIDAY, October 12)...I don't know what movie they saw, I hope it was a funny one!!

Now about me.  I will cut to the chase:  yes, I have a cancerous tumor of the lung.  Yes, it needs to be removed ASAP, although if I have to wait 4 - 6 weeks, that is not a problem.  The good news is that all that high tech OctreoScan did NOT show any other abnormalities in the pelvis, abdomen, or chest!  But I have to interject here that it also did NOT show (non - visualized was the wording on the report) the one tumor that is already known!!  Ha, how is that possible?  I know it is a low grade tumor, maybe that is why, but seriously, one gets radio active substance in their body and I lay for hours on a table and it doesn't even show the existing tumor?  That seems crazy.  Not to mention that I did it for THREE days!!

The contrast CT Scan that I had directly after the octreoscan showed everything...right down to the size! 1.7 x 1.4 cm!  Oh, and surprisingly enough it showed more kidney stones  (8 to be exact...with their sizes)!!  OMG!  So now I am thinking, maybe I was not crazy and really did have a kidney stone back in August which is what brought me to the Kootenai Hospital in Coeur d'Alene and which in turn prompted a CT scan showing no kidney stone, but oh, "we do see a 'nodule' on the lower left quadrant of your lung that should be checked out"  and that in turn led me to where I am today!!  Do you suppose "someone" had a hand in this?  I have to believe so...I guess with this type of cancer I could have developed something that is called "carcinoid syndrome" and the symptoms would be flushing and diarrhea...but I would have believed I was having flu symptoms...so this is not just a coincidence.  This is my Comforter and my Healer looking out for me.

The next step is a PET scan; because the octreoscan did not show ANYTHING the oncologist wants to confirm with a PET Scan.  Then I see a thoracic surgeon on Oct. 24 and find out when I can be scheduled for surgery.  I will know a whole lot more after that office visit...lots of questions for him.  The oncologist did say I would be about a week in the hospital and at least a month if not more to recover...oh and he used the word "pain" in there....I guess I will be offering up a lot of suffering to the Lord!!  Seems a small price to pay for my life, though, huh?

I know this was a HUGE relief for me and my family...just knowing that it was something that had not metastasized is huge for my husband and kids (not to mention me).  So we all walked (yes, the whole family was in the doctor's office...we invited Lacey to join us) away feeling like this was good news and something we can deal with and move on.  The doctor's office staff were so nice and so helpful in setting everything up ASAP...they had NEVER had a case with a mother-daughter (any any two family members) at the same time.  It was really unbelievable to them and they were so quick at getting things scheduled for me so that we could proceed.

So there you have it...good news mixed with the inevitable bad news.

Stay tuned for more updates about Dina, Friday will be a big day for her...over 6 hours sitting in the chemo chair!!  Pray for her...please.

Playing Catch-up...

Let's start with day 3 of the Pre-Chemo treatment...which would make it last Thursday.  All went well, Dina had her echo cardiogram and an EKG.  And bless her heart, when she was at the doctors she scheduled an appointment with her oncologist for me...we now have a "family oncologist doctor"...not that we are bragging or anything...because really we would have just as soon never met him...although he is a terrific person and we really really like him as a doctor...so it is a win/win for us.  He was wondering what the heck is going on?  Now he has to see Dina's mom?  He was leaving town the following Friday and not returning until Tuesday, so Wednesday, Oct 10...that would be tomorrow, is my appointment with him...

From reading past posts about how quickly this doctor likes to facilitate pre-procedures...he got right on scheduling some for me.  Yesterday I was in for a nuclear medicine scan, first I went in the morning and had an injection with the nuclear medicine, then later that afternoon I went back for a series of three scans: pelvis, abdomen and the chest area.  I was back today for the same series of tests, but they added a 360 degree scan...they took 2 and each were about 20 minutes...with my arms above my head...OH Lordy...the technician had to help me bring my arms down to my sides after we were done!  Tomorrow I go in at 10 am for the same series of three scans, then I drink a ton of water and get a CT scan...from there I head to the oncologist where we will meet up with Dina and Jamie.  So tomorrow is the BIG day for me.

Dina starts her chemo on Friday, Oct 12...she was in a chemo class today and learned all about the drugs and how she will react to them...She is actually receiving 5 drugs and there was no doubt that she will lose her hair.  The teacher of this chemo class was able to give them timelines for things happening and what to expect...like the nausea, the hair loss, the appetite, etc.  So I think she feels good about knowing what to expect and will not be surprised and NOW, she is just ready to start this process and get all this behind her.

And me too...I am ready to get news that I can live with (ha, yeah, hope I can live with it!!)  the ideal would be that there is only one and it can be surgically removed and Dr. Scott (that would be my husband) believes I will be having surgery on Friday!!!  (I believe him to be overly optimistic about how quickly the oncologist can schedule something like that!)  But we can still hope and pray!!

So tomorrow we will know a lot more about what the inside of me looks like and if this can be an easy fix!

Day 2 of the Pre-Treatment for Lymphoma

Today was the scheduled Bone Marrow procedure.  Although the actual needle insertion for the marrow lasted only 20 - 30 seconds, she said the pain was very intense.  The bone marrow was taken from her lower back and that made it uncomfortable to sit or even lay, she was rearranging herself all afternoon as it hurt.  And the tape covering her port pulls on her skin and that makes it uncomfortable to even sleep or turn during the night...She will be able to take a shower on Friday and take off the tape. She can hardly wait.

The doctor is guessing that she may be able to start her chemo next week...there are some issues with insurance.  One major hurdle that has been resolved is from the company who makes this drug for the clinical trial Dina has agreed to be a part of.  The company has agreed to sponsor Dina so there will be no cost for her...that was major! Her insurance tends to lump all treatments as one...not separate even though the drug for the clinical trial is given 4 days after the primary chemo and they can and will reject the cost if it is all lumped together...so having the company sponsor Dina is really huge for them.

Two days later... 

After writing the above post at 7:30 PM on Wednesday night I received a call from our family doctor.  If you had read an earlier post from August, I think it was, I mentioned having a kidney stone and a CT scan while in Idaho on vacation.  During that scan a small mass was shown on the lower quadrant of my lung and I was told to get it checked out further.  So I did...and had another chest CT scan and it did indeed show a "nodule" about 1/2 inch and it didn't appear to be calcified...which I mention because the doctor said most calcified nodules are benign...I then had a needle biopsy done this last Monday Oct. 1 and the doctor was calling to give me the report.  

It is cancer.  Now hang in there with me and let me tell you the whole story...I am "home alone" when the doctor calls, so I am kind of numb and shaking and feel like my heart will just pound out of my skin.  But you know I love the Lord and I trust Him and yes I was scared, but I wasn't thinking anything really serious...like this can be fixed, right?  I'll just get chemo with Dina and be fine.  When Scott gets home I tell him what the doctor says...and sometimes being smart and remembering things can be a detriment!  Ha!  that is not my problem..being smart and remembering...At any right, what he immediately thought was this was something that has already metastasized and the prognosis would NOT look good.  (because the doctor had told me it was NOT lung cancer and it looked like it came from somewhere else)  So the night and yesterday was very stressful for him.  I was kept busy with Jalen because Dina had echo cardiograms and EKG done yesterday...so I watched him in the morning and took him to school AND yesterday was the Pumpkin Patch Field Trip day and YES, I got to ride the school bus with him and go to the pumpkin patch!  Fun day with my little guy Jalen...and before going to school we had to play with his 'nerf'' gun...he has two or three...and I get the one with 6 'bullets'...he gets the long distance one with 20 bullets...we run and hide and duck behind and under everything...and we laugh and laugh and have so much fun...but it is wearing on this old body after and hour!  He of course wants to keep going!  Then because he slept in his own bed (he is over 5) well, almost the whole night (minus 4 hours in the middle) I treated him to orange chicken at Panda Express..his favorite place to eat...that was before school at 11 am...

I just realized that I really just ramble, don't I?  I guess my point was that I didn't really have time to ponder or think about this 'cancer' that is inside me...too busy playing and having fun...So, I tell Dina that she needs to make an appointment for me with her oncologist right away...we are all kind of 'numb' feeling and saying, you are NOT serious, right?  How can both of us have cancer...this is unbelievable...Dina did make the appointment and I will see him next Wednesday, Oct 10.  In the meantime, Scott is nearly beside himself thinking the absolute worst, so he personally calls the doctor and because Dina had made the appointment and talked to the doctor about me, he was already reading my reports and scans etc.  So he calls Scott back during the second set of the varsity Volleyball game and talks to him.  He tells him that it looks like something that could be surgically removed...it looks like it is contained, and he will want to do a few more tests before seeing me next Wednesday.  So Scott slept a lot better last night and is feeling more hopeful.

Now back to Dina's schedule...

Today is a free day and the good news is she will start her chemo next Friday!  We are all planning to attend the Women of Faith Conference this weekend...we go with a group of friends...It is tonight from 7 - 10 and Saturday 9 - 5.  We are all looking forward to this wonderful time to be filled with the words of the Lord, to remember there is HOPE and joy in trusting in Him and we sing worship songs that is a beautiful way to pray.  And we get to hear testimonials from many people...men and women alike...we have been going for about 6 years now and we really look forward to this weekend.

Dina has received a couple of packages in the mail from our beautiful relatives.  One cousin, Linda, sent an awesome knitted hat with the most beautiful flower on it...the colors are all gorgeous...thank you Linda.  and my sweet almost 90 year old Aunt (my mom's sister, Lorraine) made three felt hats with flowers, if you have been to the  Caring Bridge site HERE Ellie posted a picture of Dina and her best friend Emily wearing these hats.  And you really must go read the journals that Ellie is writing about her Mommy and this journey they are all on together...She has a unique writing skill and she is just awesome...Love that girl!

So that is all for now...I will keep everyone posted about both of us now...Prayers are gladly accepted and cherished.  We truly feel so blessed by the outpouring of love and prayers from everyone.  God bless you and thank you from the bottom of our hearts! 
 


 

The Port is in...

Dina and Jamie left the house at 8 am for her appointment...she returned at 3:30 PM...such a long day and then the moment she walked in the door she ran to the bathroom to throw up!  I hate to see that and I know we will be seeing a lot of that in the next 5 months.  She didn't have a particularly bad day and they even fed her, but after the port was in she had to stay another three hours.  It is all for the good... to make sure she doesn't have a reaction to it or start running a fever...but it does make for an exhausting day and then to come home and throw up doesn't feel that great either. 

I picked up Ellie from cross country practice at Athey Creek and took her to Putnam to watch Scott's frosh volleyball game...and actually I picked up my dad because he wanted to watch the game too.  Lacey was already at the game as she went with Scott to help warm up the girls and to sit on the bench and help with rotation.  We all went back to my dad's house and had some homemade chicken noodle soup, corn on the cob and a delicious apple turnover he made!!  Yummm.  Then I had to drop Ellie off at basketball try outs.  I stopped back by Dina's house to drop off all of Ellie's school bags and peeked in on Dina sitting up in bed. She was looking so much better and feeling better too.  Now tomorrow is the bone marrow and she can actually eat and drink before going into the appointment and it will not take nearly as long, so she should have a good afternoon relaxing a bit at home. 

She told me she would like to go to the pumpkin patch with the kiddos...she wants to do this before she starts any chemo and may not physically be able to do it.  Those traditions are so important for her to continue to do for the kids sake...she wants to make sure her treatments do not interfere too much with their lives...of course it will in a lot of ways, but her goal is to try to keep things "normal" for them.

I noticed when she got out of the car from receiving the port that she had her prayer shawl with her...that is why I made it for all those times she is in the hospital or the office getting her chemo injections, she can feel the loving arms of Our Lord wrapped around her shoulders, giving her comfort and strength.

I will let you know how the bone marrow goes tomorrow...

A cute story....

First, I apologize to all of you for having to look at those weird letter/number formations for a verification that you are human...I didn't realize that was on my blog...I have removed it.  I feel your pain with trying to figure out those verifications, I too have given up leaving a comment after 2 or 3 tries...very annoying.  So I hope from now on you will not have to deal with that, but please let me know if it is not working.

Cute Story:  Dina shared this with us yesterday:  She told Jalen (he is 5) that "Mommy" is sick and the drugs she has to take to make her better will most likely cause her to lose her hair.  He says, "But how will I find you?"  (Edited to add a thought:  Scott was wondering if Jalen didn't understand the "losing the hair" part of the story...so if her hair was "lost" then maybe mommy would be too...so how could he find her...gives us something to think about from a 5 year old way of thinking about losing things!)....oh and Dina's response to his was something like this:  "Pretty sure I am going to be the only bald mommy in this house!!"

Are you laughing?  OMG, that one I must remember.

You know, to look at Dina you would not know she is filled with cancer in her lymph glands...she still has her radiant smile, her beautiful blue eyes, she is still slim and trim (envious here *wink).  And even bald I think she will be beautiful because she is beautiful on the inside...just the way God made her...in His perfect Image!

Yesterday she went to Ellie's volleyball game at St. Anthony's in Tigard, she had not seen Ellie play yet as I took her last week.  Scott too wanted to see Ellie, so we went as well.  Joy, Jamie's aunt came and gave her support and with just a few points left in the final set, her MIL came with Jalen, Jake and Alexa (his cousins)...oh I better interject here that Jalen had a soccer game and that is where his daddy was and he scored 4 goals...(was quite proud of the fact that he didn't "pass"...just ran it down himself!)  I think his daddy is going to be having a talk with him...After the game we all went to Red Robin for lunch, Dina and I shared a chicken wrap...and she ate it!  (I mention this because she has not had an appetite and she had lost 4 pounds in the 11 days between her oncologist appointments).

I guess yesterday was an eating day as later the Iacolucci side of the family went to the Olive Garden to celebrate Caleb turning 13....and again she ate some pasta with veggies...not a lot, but some...so it is all good.

I think I mentioned already that she will have a "port" in place on Tuesday, she will have a bone marrow procedure on Wednesday, and on Thursday she will have an echo cardiogram along with a few other tests.  Then she will be set to begin her chemo.  The doctor talked to her about being in a study and she agreed that it was a good thing to do.  Just a couple of downsides:  1.  more visits to the office during the week; 2. perhaps another side effect like diarrhea (which she will already have from one of the other chemo drugs)..  The plus side of it is that she will be monitored very closely, a few more tests that will follow the process of eliminating the cancer...she felt like it was a win/win for her...and more people to be there following her progress every step of the way and being on top of anything that looks out of the norm.  She actually doesn't know if she will be accepted, but her type of cancer makes her the perfect candidate for this clinical trial.

Trust in the Lord with all your heart,
   And lean not on your own understanding.  Provers 3:5

Thank you for following Dina's journey through this blog.  And THANK YOU ALL from the bottom of my heart and Dina's too for all your faithful prayers.  The support is incredible and that alone is uplifting...to know she means so much to so many people is really humbling and something she can draw strength from...so my friends and family, WE ALL THANK YOU!

The Final Diagnosis

I am sorry to keep you all on pins and needles with the news from Dina's appointment.  It has just been a lot to process...a few of her friends stopping over to see her, but she and Jamie had gone to his parents to give them the news, so they came to my house to find out the report.
 
In technical terms it is called "Diffused Large B Cell Lymphoma"...it is Non-Hodgkins...we viewed her PET Scan and her spleen was very black and very large, she had lots of other black areas...on the sacrum, in the back along the spine, her neck and maybe a small one in her groin.  It is considered stage 3 with a bit of Stage 4 too...probably because of all areas of her body effected.  But, it is not all bad, well, yes it is bad that she has this, but really fortunate that she had the pain in her lower back to lead to this diagnosis.

And the doctor says 70 % cure rate...we are going with this and full steam into treatment.  Next Tuesday she will have a port put in.  On Wednesday she will have a bone marrow procedure.  Thursday she will have an echocardiogram and a few other tests.  Then she can start her chemo treatment.  She will have 6 treatments 3 weeks apart...about 4 1/2 months.  The first treatment will take 6 hours, the next ones closer to 4 hours.

Other than her back hurting, she doesn't have any other symptoms.  The doctor thinks that within two weeks of getting her first treatment she should notice marked improvement in the pain in her back.  That is great news.  The doctor warned her about losing all her hair...probably rather quickly...so we plan to go shopping for HATS next week, while she still feels okay (pre-chemo).  She has been given all the prescriptions to help her cope with side effects...constipation, diarrhea, nausea.  He wants her to keep a  handle on the pain, his goal is for "0" pain...she does not have to be a martyr and cope with discomfort...he prescribed oxycodone.  He warned about fatigue and appetite loss saying it is most important to drink a lot of fluids, gatorade is good because it has electrolytes.

The next 5 months will be a "New Kind of Normal" for all of us as we live with this and handle life with a young family...a family who is involved with lots of activities.  Ellie is playing volleyball in a fall league, playing basketball in a "pick-up" league, also doing cross country after school.  Lily is in girl scouts, stays after school one day a week for choir and is also playing volleyball.  Jalen started soccer this year...what a hoot he is to watch...!

I may have mentioned that I started knitting a "Prayer Shawl" for Dina as soon as we had our first oncology appointment.  I finished the shawl Sunday night and brought it with me and placed it around her shoulders in the doctor's office today...I told her every stitch was said with a prayer...a prayer for healing and comfort.  I had to back stitch a few as the "count" got away from me..*wink*, but I  prayed the Lord's Prayer, the Hail Mary, and the Glory Be, over and over again.  I did stop a few times and closed my eyes and said a private prayer to God (I believe I may have done some begging, too!).  I listened to my Rosary CD also and that was  really calming to me and I didn't make as many mistakes when I listened to the CD...

I think that now I will start blogging a little more regularly and post about her days, how she is feeling etc...as I want this to be a diary and a place to remember all these details that I know one day I will forget.

Thank you for staying with me on this journey and most of all thank you for all your prayers...they are working, truly I believe God answered mine...


Here is a Caring Bridge site that a friend of Dina's helped Ellie start.  Ellie is posting little comments about her mom and keeping everyone informed about how she is feeling.  If you would like to leave a comment for either Ellie or Dina, you can do so on this site.  You may have to sign in for an account, but it is an easy process and you can look at pictures that Ellie has posted and read the comments from others.  I am sure Ellie and Dina would both love to hear from you.  This is an awesome tool that will help Ellie feel connected to her mom during this process and that she is doing her part in supporting her mom.

News update on Dina

Dina had her chest and neck CT scan and also the PET scan last Wednesday, then on Thursday she saw the ENT doctor who just happens to be a golfing friend of both Scott and Jamie (the oncologist used their names when making the appointment) and after examening her, asked if she would like to have the biopsy sooner...she of course said YES!  So he did it on Friday, yesterday, Sept 21.  She had two enlarged lymph glands and he was able to extract one, not the biggest which he would have liked to have gotten, but it was too close to her lung and too deep, he didn't want to risk a collapsed lung.  He felt like he got a very good sample...so because he took this biopsy 5 days earlier, they are now able to go back to the oncologist next Friday...which is also 5 days earlier.  All of this means less waiting time to start a treatment plan and that gives all of us a little more peace of mind.

The other good news for Dina is the visit with her gynecologist...the doctor was very confident that there was not any reason for concern with her extra bleeding for a month.  The doctor said it is very common to have bleeding after having an injection of steroids...so Dina has been given a prescription of progesterone to help flush out her system and get it back to normal...that alone made Dina feel good.

Now because of the erosion of her sacrum, she really cannot be on her feet too much, it just hurts too much. We are all encouraging her to take this time to rest her body, to stay off her feet as much as possible and let everyone else take care of things.

She is so blessed to have many many wonderful friends ready to do ANYTHING for her.  Two friends from Seattle came right down and stayed for several days just to be here for her.  Em and Jenni, YOU are the BEST!  One good friend started an online "Meal Train" and the site has been passed to all our bible study ladies, MOMS group from church and all her friends...an Ice Chest is on her front porch and people are dropping off meals on the day they signed up ..she gets meals 4 days a week...and that burden of preparing and caring for her family is now left to all  these hundreds of awesome ladies...She is truly blessed and she knows it.  She is just surrounded by goodness and love from many.  And this site is not inclusive to just meals, you can sign up for help with getting kiddos to activities, pickup - drop off, doctor's appointments etc...anything she might need help with, she can get it.  Thankfully she also has a wonderful family and sister who is there for her and as Lacey said, "I am on it"...we want her to heal and not worry about the business or anything but staying positive and nurturing herself back to health.

So I guess that is about all for now...We will have all test results back when we see the oncologist on Friday and I have no doubt that he will have a plan in mind and will be ready to start the treatment to eliminate this cancer.

Psalm 29:11  The Lord gives His people strength, the Lord blesses them with peace.

She looks beautiful even in a hospital cap (before biopsy)

resting after biopsy...I am knitting her prayer shawl and have a rosary CD playing...very peaceful

Psalm 29:11 The Lord gives His people strength

We must turn to God for strength...to give us His love to sustain us through this journey.  The oncologist appointment was not good news, but not hopeless, so I am holding onto that thought.

First Dina's spleen was massively enlarged (oh...I don't think I like that word "massively"...that kind of scares the crap out of me.)  And there were other enlarged lymph nodes in her lower back.  The doctor asked if she felt any lymph glands in her neck, or groin...she shook her head NO.  But when he physically put his hands on her, he said her neck glands are enlarged, but not her groin and not under her arms.

Even without doing a biopsy he is 100% sure it is lymphoma...the biopsy will determine what kind of lymphoma...so we start with baby steps and get more information to see what we need to do to fight this battle.

Last week after the ultra sound showed the enlarged spleen and the doctor ordered the CT scan for both the upper stomach region and the lower pelvis area (because of her piriformus issues) he said the two were not related...Well, guess what?  They are totally related and the Piriformus Syndrome is not what she has been dealing with at all.  She has a lesion on her lower spine...this lesion has been eroding her sacrum bone and that has caused all the pain she has been experiencing for the last four months in her back and lower legs.

Can you imagine how long this cancer has been in her body?  Like how long before it finally "fractured" the bone enough to cause such pain?  That is scary...but we must move forward and not look back.  We must stay positive...above all else keep the positive thoughts and the will to conquer this cancer.

The doctor was fabulous, all four of us:  Scott --(once again this oncologist asked Scott if he was a doctor...he is the BEST to bring with you to the doctor or hospital, he just knows all the questions to ask, ones you would think of, but others that you wouldn't think until you walked out the door, and yet again more questions that you wouldn't even know to ask), me, Dina and Jamie all agree that we like him.  He was a great listener and because he does this every day, he laid it all out for us and how we are going to proceed to fight this....and he had NO doubt in his mind that we can fight and win this.

On Wednesday, she is going to have a chest and neck CT Scan and also a PET Scan.  On Thursday she is going to see the Ear, Nose, Throat Specialist who wants to have a physical exam before doing a biopsy.  On Friday she is seeing her OB/GYN as she has been bleeding every day since August 16.  Next Tuesday she is scheduled for her biopsy and they will take a lymph gland from her neck (there was a cancellation....praise the Lord)  One week later she will be back in the oncologist office and all the test results will be back and a plan of action will be put into place.  Meaning chemo most likely ...he says the bone will heal itself after the lesion is killed off.  October 3 is the date with the oncologist...then we will know what kind of lymphoma this is.

I don't know any more, I know emotionally she is a wreck as is Jamie...the two older girls know a little...Ellie deals with this in her way, which is kind of making jokes or being "flip" with comments, but then in the quiet of her room she breaks down and cries.  Lily who is 9, just looked at Dina and said, "It's okay Mommy God will take care of you"....

Dina has a fabulous support group...her two best friends from Seattle both came down this last weekend, they didn't overlap their time, but they were both here for her...Yesterday her friend stayed with Jalen as we all went to the doctor appointment and she got Lily to her volleyball practice, went back to the school to get Ellie and took her to her volleyball practice, then brought them home...what fabulous friends she has.  And of course her sister will do anything for her...help in any way.  I think more of a burden will fall on Lacey in keeping the Yogurt Shacks supplied and running and the Papa Murphy's too...but she is willing to do that.  What she said to Dina was:  "I'm on it"

So we will all pitch in and help and we just ask for prayers...prayers for healing, prayers for strength and prayers for comfort...Thank you all so much