My Life...Rerouted...Again...

Today was supposed to be the first day of chemotherapy for me. We were up early...Den made oatmeal...I hydrated...we got there. I spent the car ride shaking and crying...calm was out of the question.

They had to do blood work first. This is where the trouble began...it took too long to find a vein for simple blood work so now I have to have a port. The initial thought was that I could get the port later but chemotherapy could start intravenously...unfortunately that's not happening!

A port is minor surgery at the hospital. I am at risk a bit because I have to stop the blood clotting meds I take to prevent blood clots for three days prior to port installation. The risk is small but it's one more thing to freak out over.

Anyway...right now chemotherapy number 1 is scheduled for Friday...Sept. 30th...I can't believe I have to go through this all over again.

I am exhausted...literally so tired I can not keep my eyes open. When will I get my happiness back?

 

 

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Not A Great Night...

Apparently I was exhausted from the excitement of the furniture and walking around adding little touches and and making little adjustments. Once we had dinner and went upstairs I fell asleep at 9:30 but was up and wired at 10:20. I read, watched TV on my iPad and fell back to sleep but was up every few hours until now...6:00...plus I was in my chair and not in bed. I was cold and the tight band around my upper tummy that everyone says is a sign of healing just ached and hurt. No one knows when it will go away so I pretty much just feel it all of the time. There are days when I am not sure I will ever feel great again. Even on good days...I know the bad days are still out there. Sometimes my positive attitude is a little elusive. This is one of those days. Roxie does her best to comfort and soothe. She is so sweet.

Today is the first day that I actually go to Chemotherapy. Needless to say I am freaked out. I have no idea how to handle this...I just pray I can actually do it...and as ridiculous as it sounds I just want all of this to go away. I plan on staying in my house until this treatment is over. Of course I am freaking out about my hair even though everyone is telling me not to. Den is armed with list after list of rules about foods etc...and questions for my oncologist. I just want to get there, endure what I have to endure and come home and get under the covers. His way...my way...during my life interrupted.

Every Christmas our favorite restaurant offers a special way to buy extra dinner coupons...not really coupons but if you bought $200.00 toward dinner Michael...the owner...tossed in an extra $75.00 so you could actually have 2 almost paid for dinners. While organizing my desk yesterday we realized that $75.00 was going to expire on Oct. 1st...so Den either has to go eat alone or we lose them. Michael...a very kind man...said we could use them when I felt better...and as much as I have missed going there he missed seeing us. Tears and more tears to the kindnesses people have extended to us.

I am prepared for today to be an incredibly rough day. I will try my best to stay strong but...I am not sure I can.

I don't even feel right asking for your thoughts...there are so many other people who need prayers and comfort...and in spite of my fears and misery...I feel blessed by the comfort of family, friends and strangers...yes...strangers...the new people we meet who offer prayers and hugs.

So...off I go to my new routine...my sister Paula says that every day she says a little prayer asking our mom and dad to wrap their arms around me. Thank you, Mom and Dad and Paula! My brothers both pray for me...thank you Jim and John! I love you all!

Hugs...

Patty

 

 

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12 To 3...

Everyone waiting for repairmen, services or deliveries knows what a huge boring window of wasted time that is! We are waiting for furniture so most of our downstairs is out of place. Den has done everything he could possibly do to prep the family room. Furniture is either stored in the basement or routed to new homes in other rooms. The family room is freshened...and now we just wait. Oh...my in house stylist...Den...feels the need for throw pillows for the sofa...so he may zip out for a few...our choices are T.J.Maxx or Pottery Barn.

I just want my family room back...the girls and I have been stuck upstairs since late afternoon yesterday.

And all of our visitors have been upstairs with us, too. Johanna..my wonderful PT...we did exercises and our walking workout upstairs...much to Roxie's delight. Roxie is totally infatuated with Johanna. She crawls into Johanna's lap while I do exercises. Johanna holds her and directs me!

Then at around 7:00 at night this wonderful Mary Poppins like Visiting Nurse came to change my seaweed wound bandage. She is the "after hours" nurse and could not have been more amazing and kind! She has been a nurse for over 40 years! She covers all of the people who didn't get covered by 4:00 and she is on call until 8:00 in the morning! She was inspirational!

Yesterday was a long day. I could barely keep my eyes open for Survivor! The good news for me is that even though I am still waking up during the night...I can fall back to sleep again more quickly! Last night I didn't even move to my big pink chair! It was heavenly! But...I am still getting a recliner for that corner of our bedroom...one of these...I think during the next few months I might need it and although I love my pink chair...it's just not comfortable. I had a visit from a friend who just went through Chemotherapy. She has the same sleep issues I have. She says as soon as she wakes up...at that dreaded 2 or 3 o'clock time...she sneaks downstairs to her family room with a book...gets into her recliner and falls sound asleep! I want that for me!

I am off to walk and wait...I need to save energy to help Den put the family room in order later.

Oh! I got my hair lobbed yesterday! It's a short bob and my head feels so much lighter!

Thinking of all of you! Enjoy this lovely day!

 

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My Reading Dilemma...

I am shocked and appalled at the sheer number of books I have started and stopped this month. Add to that the number of ebooks I have on hold at both Delaware and Pennsylvania Libraries. I just spent $40.00 on an out of state Delaware Library card because Delaware gets newer books faster than Pennsylvania plus you can put a hold on new books that they don't even have in their system yet and they will get them! I love it! Now all I have to do when I get them is actually read them! I even requested some Audible books but I probably should cancel those.

I have tried many different genres...it used to be that fantasy got me out of a reading slump but lately...the slump is endless. The slump is long. The slump is disturbing. How can watching Beating Bobby Flay and The Pioneer Woman making shrimp with Lad and homeschooling her kids grab my attention when my beloved books can not? I am now looking forward to WAGS MIAMI...and when I woke up last night at 1:11...Manzo'd With Children put me back to sleep when normally a few chapters on a book on my Kindle would have done the trick. Sigh!

Seriously? These are just a few of the books I have started and stopped!

I think I need a book intervention!

Today is a very busy day...for Den. I am still not allowed to really do anything. Our new furniture is coming tomorrow so today is Prep Day! Touch up paint, rug cleaning, moving pieces to other rooms and or storing them in the basement. Leather sofa, chair and ottoman, coffee table, and side table...once we get those in place we will work on lamps, etc. My job is to pace Den...to calm him and make sure he doesn't do too much!

Our day starts soon!

 

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Joy...

I don't know how I will feel each day when I wake up...my stomach often feels as though I have a tight rubber band around it...it often hurts but Dr. Rhodes...the surgeon...says that is normal for the amount of healing I need to do...which may take months and months and months. Sometimes if I am walking my circuit around the house I get out of breath...sometimes walking up the stairs at the day's end...I get out of breath...again...to be expected. Tears, not ever feeling really hungry, fatigue, these are all huge issues to overcome in my efforts to get better and stronger. I could not walk around the grocery store today and shop...it would be too much for me. Sometimes getting in and out of the car for appointments...is exhausting...driving over bumps...painful...sleeping through the night...elusive. I have stress filled and anxious feelings that I never had before. I take something for them. If I didn't I would probably cry nonstop. I think I mentioned that I have never been ill before...never needed the hospital...never had even a tiny health scare...until now...

But none of the above phased me like wearing that wound vac. I will eat protein and drink orange juice at every meal if I have to. And yes...I have to go back next Monday...so that wound can be checked out...yet again!

But...here are my joyful notes!

I walked to the car with Den with both arms swinging free!

I got up about 50 times without unplugging something.

I went to the bathroom without hanging a black bag on the door.

I carried things into the house...a bag in each hand!

I got my nightgown out of a drawer without trying to figure out where to put the vac!

I looked normal...walking to the car...without loops of see through tubes with gunk flowing through them!

A friend spent the afternoon with me today...it was delightful!

I slept better!

What I mean to say is this...

the joyful notes out weigh the unjoyful notes!

 

 

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I Have Done Nothing At All This Summer...

Please please please don't think that my blogs are falling into the "poor Patty, woe is me" category...and when I say I have done nothing...I am just so limited in what I can do right now...sigh!

It's more of an eye opening realization that I don't always have to be the one in charge! And it's been nice letting go...

Our house looks almost the same...I walk around with my vac and my Swiffer...dusting...Den vacuums, changes bed linens and shops. Lots of upstairs rooms remain with their doors shut...we just don't use them...laundry gets done...Den is always doing sheets and towels...he loves them pristinely clean and he changes sheets every three days! Football Sunday is Den's fave day to do his laundry and mine...it distracts him!

A friend told us about a group of Amish ladies who will come in and thoroughly clean our house...woodwork, floors, etc. as soon as our house is clean enough we will call them to keep it even cleaner!

Right now we are dealing with tiny little bees on the deck. We also woke up to our tankless water heater not working. This was supposed to be a relaxed Sunday!

I know that once my wound vac is removed...tomorrow...I will be able to do more. I will be free! Unfettered! Unattached! I can walk where I want without carrying an 8 pound bag with me! I won't trip over cords! I am overly excited by this event and I pray I won't be knocked down again...even if I have to wear a belly band...yep...a belly band...don't even ask!

Before all of this illness befell me...we were getting this house readied for a potential sale...we needed new family room furniture, rug cleaning, painting, etc. Our family room furniture was much loved but much used by the two of us...and the chair I needed to sit in...when I rest...is so uncomfortable. But now all plans of moving are gone...we can't imagine leaving here...I can't even think about it. So the last ten days we have been working with a furniture stylist to choose new furniture...Den went to the furniture store and scouted out pieces...all we knew was that we wanted leather...he sat on sofas, he sat on overstuffed chairs, he rested his legs on ottomans. We hoped that comfy for him meant comfy for me. I am still housebound and will be for a while. So using technology and photos and Den's testimonials...we bought everything yesterday...to be delivered on Thursday. Den found a coffee table that he loves and an end table for the chair and ottoman...the old controlling Patty might have protested but this Patty just wants him happy. We are controlling our impulses, too...we will look at lamps, different blinds, and other stuff once the furniture is in!

So...the only issues we have today are bees and cold water? What a way to start Football Sunday!

 

 

 

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