HAPPY NEW YEAR

WISHING ALL OF YOU A HEALTHY and CONTENTED NEW YEAR!

Thank you for all the support yesterday.  I resorted back to the meds last night to get some sleep and at least I got that.  It was much needed.  I feel much calmer today and know that what will be will be.  I just have to rest up now so I can face whatever that is and have the energy to fight if I have to.  

Today will be a resting day and maybe I’ll get myself out to get something food for dinner and for the next few days.  I have made up my mind that I must start to exercise, even if it hurts, to gain some strength and to get my endorphins going.  I am not giving up!  I have been angry and feeling sorry for myself long enough.  Time to fight back.

It is a New Year and hopefully much better than the last one.  

 

THE SCANS ARE DONE

I was such a wreck this morning that Jan decided to work from home and keep close to me.  This beautiful man, whom, I have been with for 38 years in January, has to be the kindest, caring man I have ever met. He covers up his own fears to make my life go more smoothly. He sits and sleeps hours in chairs so he can be with me for all of these tests. I must say, I have always loved him but I love him more and more each day if that is possible.  He spent so much time today just trying to keep me together with his warm words, hugs and just being available as he worked.  I am so very lucky and grateful to have him in my life.

I cried most of the day and then shook until they put me into the machine.  My arm was attached to my side and I was in tremendous pain.  I even practiced Lamaz breathing to make it through.  And I prayed my heart out. Of course we have no results but I am glad it is behind me.  I will meet with Dr. Bajorin on Tuesday and then we will know what is up.  

I need to eat something and drink a lot to rid myself of the radioactive stuff in my body.  And I will spend the evening with my heating pad and somehow try to get some rest.

Thank you for all the prayers put out there for me.  They have worked in the past and I will use the energy from all of you to carry me through the next phase of this journey.  It sure is exhausting right now and I think we could use a rest stop.  But again, this journey is not in my control.  I am just a back seat driver.

SCAN DAY

Needless to say, it has been a sleepless night. I have tried another medication from the pain team that gave 1 hour of muscle relaxation and a nap but otherwise nothing else.  I am obviously anxiety ridden about the scans today but again cannot do anything but show up.  So I will take the new medication, go back to sleep, and wait until this afternoon to head over to Sloan.  I just want it over and to know what is up.  We will not have results for a few days due to the New Year holiday so I will just have to be patient and wait. (Not my forte).

Thank you for all the well wishes and prayers.  They mean so much to me.  

ROUGH SHAPE

I have been up all night.  The meds only knock me out for an hour and I walk the floors because I cannot get comfortable.  My mind is going crazy and I cannot stop crying.  I will admit, for the first time since I have been diagnosed, I am really scared.  I don’t know if I have the stamina for more treatments and I am worn down dealing with the pain. I wish I could share some positive thoughts today but the only sunshine I am seeeing right now is outside my window, Thank goodness for that at least.

The plan for today is to unpack from  our jaunt to the cape, read and get a little sunshine on my face.

BACK IN NYC

The visit to the cape was very memorable in many ways.  First and foremost, I spent time with each of my children, and their significant others, and my grandson.  I truly enjoyed seeing each  and every one of them.  As usual, some oddity took place with my health and I awoke with pains in my back when I coughed.  With the fear of who knows what, I asked Jan to return me home to go to urgent care at Sloan.  We packed up, even though I was reluctant to leave the kids behind, and started off for home.  We drove one exit when I asked Jan to please take me to Cape Cod Hospital in Hyannis since I knew I could not endure the 4+hour drive to NYC. The previous blogs were I am sure details of what happened after that.  I knew very little because I was highly medicated and slept most of my stay there. Thank goodness it turned out to be not much but I am still left with pain in my arm and shoulder and very groggy.  I am also feeling frustrated an very down in the dumps right now.

The joy of seeing my family together is bittersweet.  I adore them.  Their laughter touches my heart, and because of the way I am feeling, I feel so uninvolved with their lives.  And then the horror in my mind begins.  What will happen if this disease takes me over and they lose me?  I cannot stop weeping and find I cannot enjoy anything.  I want so badly to recover to enjoy these fabulous young people and to see them and their families grow up.  They are so wonderful.

I just awoke from another nap and will try to stay awake for awhile.  I am trying not to deal with the PET scan on Tuesday which will tell us what is happening in the lungs.  I though we had it made but I should have held some back for negative possibilities.  The inability to return to work has me so depressed and I cannot imagine what I am going to do here in this apartment for the next few months. I am so hoping this lung thing is fixable and I can at least get out of this space. 

As always, Jan is optimistic and supportive but also very tired.  This journey is so filled with ups, downs, hopes, unknowns, that it is very difficult for anyone’s emotional stability to handle.  But we are trying to remind ourselves of what we have not what we don’t and how grateful we are for all of those people who have supported us through this time.  Sometimes it’s very difficult but your notes and calls are always a pick-me-up.  Thank you for sticking with us.

Hyannis Hospital, discharge

After consulting with Drs at Hyannis Hospital and the team back at MSKCC, the probability of a pulmonary embolism was reduced and in concert with a reduction of pain when Debbi coughs, her discharge from the hospital will be effective in about 1 hour. Debbi was judged safe to travel to NYC. We will however spend the rest of today and Shabbos at the Cape house where we hope Debbi will get some rest while Josh & Katherine, Aaron & Stephanie and I attend to any and all of her needs. The plan includes returning to NYC early Sunday morning, before the traffic, in order to minimize Debbi’s travel time. Still critical is the PET scan on Tuesday in order to determine the nature of the spiculated cells in her lungs and to try to determine a reason for the pain Debbi is feeling in her left upper arm.

 

Hyannis Hospital, Thursday night

It took a while but by 5pm we were assigned to a beautiful private suite in the new Mugar building of the hospital. Seems that our IV nurse, Lou (short for Lucine Kovacs) put a call in to the room booker and told her that Debbi was a friend from New Jersey. Lou had lived in New Jersey but moved to Cape Cod many years ago. The room is the best. A sofa turns into a full size bed and the room is fitted with comfortable furniture as well as all the requirements for excellent patient care. 

As you recall, Debbi has a “port” sitting just beneath the skin a few inches down from her right shoulder. The chemo nurses at Sloan would plunge a needle through the skin into the port and it would bottom out against a small metal safety plate. Once accessed, blood could be drawn or IVs / chemo could be administered. Accessing the port turned out to be an art because the entry site of the port settled exactly below the scar tissue formed when the port was surgically inserted. Trying to access the port by piercing the scar tissue directly above it turned out to be very very painful. The best “accesser” at Sloan used to slide the skin down and plunge the needle into the port just above the scar line. During all the chemo sticks, we always requested that Ann Marie would do the stick as most other nurses, even when told about Ann Marie’s procedure, caused Debbi some pain.

Here at Hyannis Hospital, Lou came by to access the port. We told her of Ann Marie’s procedure. After carefully examining the site and preparing her clean kit, 1, 2, 3, the port was accessed and Debbi felt absolutely nothing. Also, Lou was very personable and kind and just a beautiful person.

Anyway, after sticking Debbi, Lou calls up and greases the way and here we are in this wonderful suite.

Medically, Debbi is on Heparin to make sure that any possible clot does not increase. With an increase in fluids we are hoping that her Creatine component will drop a bit (it was 1.47 and normal is 1.2) so that she can be administered the dye that is used for a CT scan. The CT scan with the dye will be able to pick up any possible blood clot and unless we have the all clear it will not be possible to drive Debbi back to NYC. 

On Tuesday she is scheduled for a PET scan so going home is important. The PET scan has been ordered to determine the nature of the spiculated cells found on her lung and also will hopefully provide us some clues as to the nature of the pain in Debbi’s upper arm.

Rea, Josh, and Katherine came to visit and that is really helping Debbi get through her withching hours which are from 7pm till bedtime. After making it through the day, somehow her pain doubles in the witching hours so her visitors are really providing comfort.   

Hyannis Hospital

After a few days at our summer house in Dennis, Massachusetts, (Cape Cod), Debbi started feeling pain in her back just below the left scapula. This is, of course, in addition to the continuous pain in her left upper arm. Debbi made the decision to leave the Cape this morning and to head back to NYC so that she could go to the MSKCC Urgent Care center. The pain, she said, was excruciating each time she would try to take a deep breath. In addition, given the finding of small spiculated (spiked) cells in both lungs during the last scan, and not knowing whether they are due to infection or, G-d forbid, a spread of cancer to her lungs, Debbi has been quite on edge lately. Following a negative report on Wednesday saying that the blood cultures drawn did not find evidence of infection, her anxiety level has increased. Add to that the inability to sleep and the additional pain, Debbi was just not able to find any peace… even for just one minute… thus the decision to return to NYC even though we were expecting a full Cape house with all of the children & our new grandchild Jonah.

After packing, we said a quick good-bye and headed to Route 6, the main Cape artery. Passing Exit 7, Debbi remarked that she did not feel up to the long trip back to NYC and would rather just go to the Hyannis Hospital. We were a bit apprehensive just thinking of the amount of historical detail we would have to provide in order to educate the staff as to Debbi’s journey. Nevertheless, we exited and made our way to the hospital. In short order we were shown to a bed in the ER and Dr. Henrik Ecker came to talk to us.

A very sharp and experienced physician, Dr. Ecker listened intently to our quick synopsis of Debbi’s medical adventures and suggested that we undergo a chest Xray. The chest Xray showed the nodules described as spiculated cells and a lung Vq test was ordered to highlight any possible blood clots. This being Xmas, a technician was called in and the test was performed. Debbi breathed in a mixture of Technetium 99m and Oxygen for about 5 minutes and then scan of her lungs were taken which captured the decay of the isotope. Next she was administered an injection of Technetium and the scan was repeated. By comparing the earlier scan with the later scan, it was determined that one area of the lung might not be receiving proper blood flow. The plan is to keep Debbi overnight and treat her with Heparin in an attempt to dissolve any possible blood clot. At the same time, Dr. Ecker is writing up an order for an analysis of her nervous system to try to see if the pain in her arm is a referred pain possibly caused by an injured nerve.

Expecting to be admitted soon so I will write more later. Stay tuned.

NO BOSTON

We were to leave this morning for Boston for a family Hanukkah Party but the weather has changed our plans.  It would be impossible for me to sit in the car for 4-5 hours, then through the party and another 1-2 hours to go home to the cape.  My shoulder will not be able to endure this.  I am disappointed since Jan’s cousins, aunts and uncles, and my kids will be there and I have not seen many of them in a long time.

If the weather is better tomorrow, we will head to the Cape for the week.  I need to get out of this apartment and spend time with my kids.  Hopefully I will see all four of them, their significant others, and Yonah while I am there.  It is sad that I have this little grandson that I see so rarely but this is the way of our world.

For now, I am going to ice my shoulder and climb back into bed with a book. I am grateful that the pain is less this morning than last night,  I am otherwise feeling good, and trying not to think about this lung situation until we have some answers.  I must admit, I am scared.  I am also mourning the fact that I will not be back at work and spending endless hours here in the apartment again.

A NEW DAY

 

Surprisingly, I slept through the night and find that I am quite calm his morning. I have talked to the people in HR at my job and they agree that this year is a wash for me.  And so, with that loss, I will now try to focus on the next battle ahead of me and try to aim for next September.

I think I am just in shock and back into soldier mode. Just do what the doctors tell me and don”t think or ask why.  I am praying for a miracle and that this latest finding is either treatable with antibiotics of some form of chemo.  And so it goes.

We were planning to attend a family Hanukkah Party in Boston this weekend but are waiting for the weather reports. I had hoped to spend the week at the cape with my kids but Jan has to work and I have to see what the doctors tell me.  I am getting used to living on the fly.  This would have been so uncomfortable for me before this journey began.

So for today, I am thankful for a nights rest and to wake up today.  I am grateful that the arm pain is livable so far this morning.  And I am especially grateful to my doctors who have me under so many tests and have not let this new episode slide by.  Please continue praying.  It has worked so well in the past and I still need all the help I can get.