Puddin Taine

Today, September 25th, was my appointment with Dr. Nanda, my radiologist.  We had to go to the office in Ocoee.  Took forever to get there.  Only 15 miles but with traffic, took about 45 minutes.

When Dr. Nanda walked in to the room where we were, he shook our hands and then asked, "Do you live near here?"  No.  We took this appointment because otherwise, we would have had to wait until late October for an appointment at the Cancer enter.  Computer was down but he knew my case and discussed my surgery, why we went that route, how I was feeling, and the next steps he wants to happen before I do any radiation.   Most of these we knew would be the case.  He wants me to heal some more.  Then he wants me to have a MRI and a Pet Scan.  The MRI is scheduled for October 1st. He wants to discuss my case with Dr. Sarriera.  Said he was going to call him today.  After the scans, I am to see him again on October 8th.  By that time, he will have the scans to discuss with us and will have talked to Dr. Sarriera.  At that appointment, we will discuss the radiation if this is the way we are to go.  We know the Myeloma is lurking and need to stop it whether it is radiation and a new treatment plan with chemo.  The chemo drug that Dr. Sarriera is proposing is Thalidomide.  We just have to wait until the scans are done and we meet with Dr. Nanda again.  We just need to stop it.  Dr. Nanda is such a great person.  Very soft spoken and a caring attitude.  I mentioned to him that when I tap on my head where the surgery was that it sounds hollow.  He started laughing and looked at Bill.  Bill just said he wasn't going to get caught up in that laughing too.

And here are a few more "things" I have accomplished.  Been in the pool, walked around pool with Sandy about 25 times.  Went in to Pubix grocery store for the first time since before surgery.  Getting in to and out of the shower by myself.  Even sewed a bit.  Little  "things.

Monday is my last day with Kate, OT.  Of all my therapists, home and in the hospital, Kate is my favorite.  Will miss her.  She suggested that I contact my Primary Care Physician and request a script for out patient therapy for a few more weeks.  Can't do that until I have been discharged from Home Health Care.  That will probably be the end of the first week of October.

Feeling a little bad for Sandy.  She came down to help with me and I don't need a lot of help if any. Of course, when we first talked about her coming down to help, we had no idea that I would be so far along.  My sister and Bill covered those first 3 weeks I was home pretty well.   Other then walking more, not much else.  I never thought I would be this far along.  Nor did Bill.  So she will just have a small vacation in Florida.  We will work on walking though.  And crocheting.  :). That's good for my fingers.  Denny and Sandy have been making us great meals so far though.  Yum.

During my recovery period at the hospital and my not knowing a lot as what was going on, I was asked by a nurse in ICU what my name was.  To which I responded, "Puddin Taine, ask me again and I'll tell you the same.  I may have said this more than once to that question.  Oh, the things I have been told that I said and did.  I will be telling you more.

Quote:

I will fight this cancer, as I am determined to win.

Down there

Using my left hand.  So much better.  My OT lady, Kate, keeps me exercising.  She will be here tomorrow at 9 AM.  Ugh.  9. :).     I was reevaluated by the PT supervisor last week.  He was very pleased with my progress.  Did a few tests like close your eyes and stand on one foot.  Okay.  Anyway, he was pleased and recommend 3 more weeks of PT.  Okay by me.  The more I do, the better for me.  Not sure about OT yet.

Have a few more "things" that I am very happy to tell everyone that I can do again.  Shower pretty much myself, I walked in to the hair salon, walked in to a restaurant using my cane that the week before Bill pushed me in there with my wheelchair, straightened my closet so I can find my blouses, etc.,  crocheted a chain and did a few stitches, walked out in to the garage without even realizing what I was doing, still doing what I can with setting the table, loading dishwasher, "things" I couldn't do three weeks ago.  Have met Gery and Michelle at restaurants several times, using cane, not using cane.  We played "dimes" (Tripoly) for the first time in weeks.  Did okay with shuffling the cards, dealing the cards, getting my winnings of dimes, holding the cards with the help of a card holder Bill got for me   I am sure I missed some cards the should have been played.  But the laughter makes up for any mistakes.  Love playing dimes with Gery and Michelle.  Sharon, Michelle's aunt,  has been here .  She leaves Friday.  Such a wonderful lady.  She sat with me a few times so Bill could have some free time.  Next year when she comes for a visit, I hope to be able to run like we did two years ago.

Got a text from my friend Benn.  He, like me, is running out of drugs to treat his Myeloma.   Hoping and praying for a trial.  These trials are harder than our transplants but if it keeps him alive, he feels he has to do it.  I pray he finds one.  I want him to be kept alive.  Not ready to lose a good friend to myeloma.  Pray for him and his.

Still have some tender spots where my incision is.  They are healing nice.  Just a few scabs (yuck, sorry) left.  The area where surgeon put back together sounds hollow if I tap on it.  I can't feel anything if I pull my hair  or scratch in that area.

My appointment with Dr. Nanda is this Wednesday.  He is the radiologist. Need to get this started as we know there are Myeloma lesions on my skull.  He will order X-rays of my skull, make a mask, ask me to shave my head and then start the treatments.  Will know more Wednesday.

Sandy and Denny come tomorrow and will be here for 3 weeks.  She will be surprised to see how much I am able to do.  Need her to help me walk more.  And walk steadier.  I still have a fear of tripping or falling.  Then my sister, Cheri, will be here Oct 3rd till the 10th.  Can't wait.

Bill makes me cotton balls with various oils on them for me to smell, lavender, frankensence, thieves, peppermint etc.  While in the hospital so I would know where it was, I would put it down my nightgown.  One of the nurses was listening to my heart and saw one of the cotton balls and said, "I wonder who put that down there?"

Quote:

The struggle you are in today develops the strength you need tomorrow.  Everyday I challenge cancer  and survive is a victory for me.

French fries

Hope I don't have as many mistakes with this post.  Using my MAC again and my left hand is working a lot better than last post.

Have had PT several times a week.  Today was his last day with mw.  I will now be reevaluated by his supervisor.  From there they will decide if I need more PT or need to go to an outpatient therapy facility.  I still have several sessions left with my Occupational therapist.  Then will also be reevaluated by her supervisor.

Deb sure did help me with my therapy exercises, making sure I took my meds, constantly
checking to make sure I locked my wheelchair before I stood, walking without my cane so much, showering, and on and on.  Those 3 weeks she was here was just what I needed.  My little sister to the rescue.  Glad she was available.  Glad she cared enough to leave her home and husband for 3 weeks to assist me.   Sure makes it easier on me now.  Ihave  had a few tears since she left when doing some things that she helped me with.

I am able to use my left hand to pick up some things.  Able to lift my left arm above my head.  Have a bit more strength when holding on to things.  Can wring out a wash cloth pretty good, have helped setting the table, loading the dishwasher, toast myself a muffin, put in earrings, dress and undress myself with minimal help, replace the paper towels, walk to the bathroom without my cane, use the wheelchair less and less, open an envelope,   All these things that less than 3 weeks ago I couldn't do.  Things I never thought about being difficult tasks.  Frustration does present itself at times when trying to do certain things.  Things that I know I was at one time able to do.  Things I took for granted never thinking they would one day be difficult to accomplish.  Things, just things.  Things I will keep on working on.  My next goal is to get in to that sewing room.  I need that serenity again.  I will get that serenity again.  I say every day I am going to see what I can do as far as sewing goes but don't seem to make it happen.  Guess I am a bit afraid I may fail and don't want that to happen.  But I will  soon make myself see  I can sew even if it's just small pieces and not a quilt.  I will you know in my own time.   Has to be in my time and will be in my time.  Meanwhile, Kerri is filling in for me.  I am so proud of her picking up my love of sewing.

Ellie had a weekend camping trip this past weekend so Sasha came over to stay with Bill and me.  She and I  were going through the freezer to see if we had any French fries.  There was some in there.  But when Bill went to the store, he picked up another bag.  With her Pap's help, they made shrimp scampi for dinner.  This we served over linguine.   A few hours after dinner, Sasha came running in to the living room hollering, "Pap, we forgot the French fries."  Those who know Sasha, know she is quite the eater.  To her having linguine and French fries together would be fine.

Quote:

Every accomplishment starts with the decision to try.

Pants

I am back. first I will tell you that there will probably  be a lot of mistakes in this update as I am typing this using my left hand too.  My left hand that I wasn't even able to lift since  after my surgery July 29th.  My surgery to remove a tumor on my head.  Sugrery that took 4 hours.  A tumor that was  larger then expected.   A tumor.  In addition, my surgeon removed other cancer growth.  Surgery that left me unable to communicate for several days.  surgery that Dr. Garcia, Bill, Kristi and Kerri were concerned where  I was.  Surgery that finally after 3 days and in the ICU, I responded to Bill. Bill who was constantly by my side days and nights   Bill who played music that he knew I liked.Bill who called in to the nurses to see if they were using my oils.  Bill, my rock.  Bill, the love of my life.  Bill who encourages me every day helping me to regain where I was before surgery. Along with him, Kristi would come to the hospital almost every day.  Kristi, beinigng my support person during Physical  Therapy.  Kristi, my support person during Yoga.  Kristi, my support person while I was eating my hospital meals (needed support to eat some of them lol).  Kerri who called me every day to see how I ws DOING.  Kerri who from far away sent her love via phone calls and texts.  Kerri checking in with her sister and Dad to see how I was doing.  Calls from my grandkids.  pictures hung so I could see them from my bed.  Pictures of Bill, Kristi, Kerri, all the grassndkids and my sweet, sweet Tommy.  Bill, Kristi and Kerri having fun with my actions, shouting, during my ICU delirium ,  Will blog some day  about what they told me.

26 days trying to convince them to let me go home to heal.  Finally, I was released on August 23.  Wheel chair, cane, shower chair.  Home!!!

We lost our sweet Tommy on Sept 6th.  we had him put down.  He wasn't doing well for a bit.  So skinny.  We decided to have a vet come to the house to do this.  She said his kidneys were so small.  Sound of kidney failure.  So hard to do.  Sure do miss him.  He would have been 15 in Feb.  We got him and Chai 13 years ago.  Bill and I felt Tommy was telling us it was time.  Still hurts.

My sister Deb, at my request, came to help Bill and I.  She got here August 26th.  And boy, what a wonderful help she has been.  I needed help with showers, bathroom visits, dressing, undressing. And Bill needed someone to relieve him.  Give him a chance to go to the store, cook, dishes, laundry.  All the things that I once did.

I have made great progress with Deb and Bill's help.  My left hand no longer hangs like a wet noodle.  I am able to lift it, make a fist, and although not perfect, able to use my laptop to type this biog.  Someday, someday.   I have physical therapy several times a week.  I try to do my exercises every day that  my therapist gave me.  I  am walking with my cane, using the wheel chair less and less.  Dressing and undressing myself.   Getting there, getting there.

Deb has been an awesome nurse.  She helps me so much and has helped me get as far as I am.  She goes home on the 13th.  Bill said he's not so sure her will le her.  :).   Sorry Donnie. Deb wasn't sure how long we would need her and was willing to stay to whenever.   Guess whenever is the 13th.  We will miss her Helped us so much  Thanks , thanks, thanks,

Again, hope you can make sense of this.  Just wanted to update you all and exercise my left fingers.  So glad I can use my laptop.  So glad, I am able to walk again, even though I have to use a cane at times.  So glad.  Soglad.  Prayers are being ANSWERED.

When Kristi was learning to walk, she would hold on to the side of her pants.  When I was learning to walk again, she held on to the waist band of my pants.

Quote:

Cancer is a journey.  Do not count the days, make the days count.