A LONG LONG NIGHT

I am having a very difficult time finding a place for myself as well as sleeping.  And so I am wandering around, knitting,watching videos, or just thinking.  I am certain that the steroid is not helping the situation but I  am also pondering too much also.

Yesterday was a quiet one just hanging out with my Dad, going for our short walk to the grocery until my darling friend Gail called and asked us to go out for a early light dinner around 4:00.  It was a pleasure going out for about 2 hours and getting a change of scenery and some very lovely company to boot.  But as the evening wore on, the night thoughts returned and there was no way sleep was going to prevail.

Needless to say, the pain has not improved and I am emotionally floundering.  I am trying to stay still but I cannot understand what can be causing this pain and why we can’t find some relief.  It is so frustrating.

Tomorrow I visit Dr. Russo (kidney DR.) for a Cystiscope and then Tuesday will begin chemo. I have no feelings about either right now, I am just doing what I am told.  Soldier mode has returned.

I was trying to explain to my Dad last night that people with illnesses, like cancer, live on a very different plain than everyone else.  I listen as others plan trips or what they will do even a few days from now with the security that it will take place.  Now that I have cancer, that security has been removed.  I take each moment of each day at the most and just be.  There is so little I have control over and I am so much more aware of it now that I can’t plan anything.  Very humbling.

Joshua called to tell me that it looks good that he will move back east (Boston) within the next few months. I will be so thrilled to have him closer so I can get some joy from his wonderful persona.  Just like his sibs, his life will get very busy and that time will be limited, but at least he will be more accessible.  I love talking with and being with my kids.  They are such a measure of pride for me.

Jan continues to work long hour in this horrible market and after Dad leaves I am certain the days will seem interminable.  I feel badly that Jan is so exhausted from work and then walks into this wimpering, short haired (at least I still have some), overwrought woman.  It must be very difficult for him to deal with all of this now.  I can’t even imagine what I would be like if I were the caretaker in this situation.  He is doing a much better job than I even could.

And so, I am grateful that I am awake and able to even write something on this blog today.  I am also keeping in mind a line from the chemo card about what this new medication is supposed to do. It is supposed to INTERFERE with the cancer cell’s ability to grow.  This is what I am praying for.  That these cells cannot continue to grow and I can recover. I am willing today to go to any lengths to make this happen.  Afraid, yes.  But ready and willing.

Wishing you health, joy and a little more warmth  if you are here in the northeast.

NO PLANS

It is cold and after the full day of the inauguration, Dad and I have no plans.  I awoke after a better sleeping night but the pain issue has not changed.  I’ve changed.  I am back to taking few meds. Keeping the   arm in an ace bandage and sling and using it as little as possible.  The pain is no different than when I took all the meds an used the arm so why stuff those chemicals into my body?

I am so ready for Tuesday to get this fight going.  I am hearing so many remission/return stories lately that I am so frustrated and scared.  I have to fight this fight to  at least regain a little of my living life between these treatments.

My Dad has decided to remain until first chemo next week to keep me company and Rea will then come with the baby for entertainment.  That should get me through January.  It makes me feel so much more comfortable going through this stuff when I have others around and less time for my mind to wander.

For now, it is cold, and I am going to climb back into bed with the heating pad.  I am grateful for the extra sleep and the ability to see more clearly without the meds.  I would like to get out to Barnes and Noble or something today if it is not too cold.   We could use a little change.  I think I am going to put a chart up in front of my windows though so Dad can calculate how many ships, tug boats, helicopters, planes, etc he sees all day.  He loves watching everything passing by.  My brother, David, has been kind enough to send more medication and clothing to Dad so he can extend his stay.  I am grateful he is such a good son. 

RADIATION#3 COMPLETE

The  last radiation treatment took place yesterday and I am still hoping for some relief from this pain.   I was awake most of the night, not uncomfortable, just there.  I know the steroid is fighting all the the other meds that would allow me some rest.

Jan is working long hours and I am so grateful my Dad is here.  During the early evening, I get a little uncomfortable about being alone.  A new thing.  So I am so lucky Dad is staying until Thursday. Wish he would stay longer but he will come back. He is delightful company and self-entertaining.  He is also very neat and appreciates the small meals that I am preparing for us.  No fan fair.  He is so excited about the inauguration today so that is our plan; To stay inside and watch as much as possible and watch all the celebration on CNN.  Maybe we’ll mosey out for the paper.  He loves going next door to our little market each day and buying just what we need.  We can make him an apartment person very easily.  I also appreciate that I have this time with him since our lives were so busy, me with my kids, he with with the university, and living 2-3  hours away, we did not see each other very often.  He also did not travel while my mother was alive.  She liked to stay at home.  So I am so appreciative for this week.  I just wish I felt better and he did not have to be here under these circumstances but I think he feels needed and at 82 (83, Feb 6th) that is important also.

And so another quiet day. I am praying that these treatments have gotten rid of the cancer cells and that eventually I will regain use of this arm and relief from the pain.  For now, I am trying to get myself ready for the next round of chemo and pray that that knocks the rest of the cells out.  This journey is arduous and sometimes unbearable but I am taking each day, one at a time, and trying my best. I know that Jan is having a very difficult time with all of this responsibility now; trying to make it in this economy and taking care of me.  He is exhausted.  My prayer is that he stays healthy during this time and accomplishes that which is important to him.

REAL LIFE

Real Life is getting in the way of my allowing myself to be sick.  We have to make some personal decisions about whether to stay in this apartment or move to another or just skip NYC and go to Cape Cod.  I spent the night moving from place to place in my head, moving furniture in my mind, getting rid of things we do no need, planning where things can be given away and awoke to realize, I have the ability to none of those things now.  I am in treatment for cancer and I am stuck here in NYC and unable to physically accomplish anything.  I am very very frustrated.

I feel so badly for Jan right now since all the responsibility for this family financially and physically is totally on his shoulders and there is nothing I can do about it.  I am not used to being so helpless and unhelpful and my options are few to assist him right now.  I am so angry. It is never an easy time to make major family decisions but in the state I am in right now….I feel so worthless. It’s bad enough being really uncomfortable physically.

Today is radiation #3.  I am hoping it will at least get rid of the cells that are running around in my shoulder.  The pain is still there! But that pain doesn’t even hurt as much as the inability to help my mate during difficult times.  I am so frustrated!

I am grateful that my Dad is here to keep me company and that I am awake and well enough to go to treatment.  I am grateful that for today, I have a warm home, food to eat, and am taken care of and loved by my family and friends.  I guess really I have it all. 

 

The SAME

Not much has changed since the last writing.  The pain remains the same, I am sleeping or knitting and talking or writing to many of you.   

My Dad arrives this morning and I am very happy to have the company. Jan is so busy right now with work and I am sure a reprieve from taking care of me will be good.  I would have loved to have the energy to go out and do some things with my father while he is here but we will have to gage that a day at a time.  He may have to get used to watching silly videos which I am sure he has never seen! LOL.

And life goes on.  Steph and Aaron plan to come for President’s weekend and Katherine may be in sometime alone in February for a visit.  Things to look forward to, plans to make, that will keep me going for awhile.

It’s pretty early and pretty cold so I am climbing back into bed.  Have a beautiful Sunday and stay warm with a smile on your face.

PLAN FOR THE DAY

I awoke to a tremendous amount of pain today but the sun was shining so brightly in my eyes that I just had to smile.  Then the tears followed.  Jan has added an ace bandage to the sore area and it seems to support my arm in a way that the pain is a tad duller and I can move my arm a little more.  I wish someone some where knew what was happening here.  

The area that is being treated by radiation is doing well and is only sore to the touch, like having an old black and blue mark.  I am so lucky that we persued this pain because we found that the cancer had begun to spread again.  Could have gone on and on and not known for awhile.  But the other pain persists. Don’t even have a clue on who or how I can get help here now.

Today I will sleep  and relax in one place for long periods of time time to relieve the pain and enjoy my husband.  It’s been a tough week and we could use the rest. I am also getting my brain ready for the chemo treatments and knowing that they will be annoying but helpful in this fight.  I never thought that I could do it again and I am marching in for more.  Humans; so resilient.

So the plan for today is to just be and rest.  I am praying that we can find the source of this pain soon. It is truly wearing me down. Back to bed.

RADIATION #2 COMPLETE

This was a little more uncomfortable treatment this time.  I could not find a place for myself and parts of my arms were numbing up.  By the end, I was begging in my mind for it to be over.  The pain continues.

I am planning to get our Sabbath meals prepared and the turn back into bed for awhile.  I am fatigued. Dr. Michael hopes by Sunday I should feel some relief before I head into treatment #3 on Monday.

My father is surprising me by coming on Sunday and staying until Thursday just to spend time with me.  I hope he won’t be bored by my napping and video schedule LOL.  But he will get to go visit Sloan on Monday and see where I have been hanging out.

Wishing all a relaxing and breathable weekend.

THE HAIRCUT

I was so fortunate to have Gail Spira join me for the haircut.  I had prepared myself well and really was looking forward to just having that step behind me.  I did get a little weepy beforehand not because of what I would look like but because of why I am having to do this.  I have been lucky that when I wear clothing the operation scars do not show but this haircut is an overt sign that I am truly fighting the fight.  

I must say I like my hair a lot and look a great deal like my daughter Rea and she is very cute.  It will be easy to care for when it again grows back to this length.   The other kids were quite proud of me and sent notes and called after I sent them pictures.  Jan, on the other hand, did not handle it as well.  He married me with hair to my waist and has never seen me with short hair but that isn’t the issue.  I think it was a slap in the face of where we are now in the treatment for him that he has to see constantly.  It is growing more difficult each day for him added to trying to make a living in these economic conditions.  Have a little stress!!!!  He is such a very good man.  Today, we are together 38 years.

Today is radiation#2.  I am still feeling no relief from the pain but it is too early. I do know that they are killing the cancer cells and that is what is most important.  I am taking a lot of medication, trying to be as still as possible to avoid the pain and even putting on the sling sometimes to take the weight off the upper arm.  But I am ready for the next round and praying for some relief.

I am hopeful that this new round of treatments will stave off the cancer for awhile.  I really need some time with my kids.  There are times though that the possibilities become unbearable and I am besides myself with fear and sadness.  I am working diligently to stay away from those times and be grateful that I have today.  Each morning, by their choice, each of the kids calls in and reports what they are up to and keep me in the loop of their lives.  That is more than some very healthy parents get. Or they will call during the day with some tidbit of news or a question or a way to just let off some steam and I am here to listen.  They are the best kids and I am so lucky.  Josh admitted yesterday that one of the reasons he is moving back east from San Francisco (which he truly loves) is to be here for me.  He is such a good son as are all of the other three children and their significant others.

So off to the showers. The cleaning lady will finally come after being cancelled for two weeks with all the people around.  Then off to figure out what to do for dinner and lunch tomorrow (the sabbath is here again).  Treatment at Sloan is at 12:00 so not a lot of time to get things done.  And I have begun knitting my second hat.

Also I received the most magnificent knitted shawl and hat, made by my sister, Ellen, last night. It is a beautiful Rose color with clasps in the front.  She sent it for extra hugs and to keep me warm during chemo.  This is a brave, brave lady.  As sick as she is, she is still more concerned about what is happening in my life.  I wish I could bring her here to Sloan with me.  Please continue to pray for her recovery also.  She is a very kind, gentle person who has been coping with this illness over 13 years.

Wishing everyone, sunshine in your eyes, a little warmth, a look at this beautiful world with health and contentment.  I am so grateful for each and everyone of you.  Your prayers, calls, emails, visits all keep me up and ready for the fight. Today I am ready.

The Angel Was With Me

The radiation went quite well.  On arrival, after changing into a gown, the team of 4 technitions and a nurse spend the first 40 minutes lining me up in the mold taking xrays to make sure all the tattoos lined up an that they were sure the radiation was going just to the the right spots, it was time for the treatment. As a laid there still and quietly a voice came next to my ear which said, “Debbi, it’s Michael.  Don’t move or speak, I am here with you”.  I almost cried.  The staff tells me that Dr. Michael has never been there from line up right through treatment.  That is why I was only on the table and hour and not 2-3.  Michael was there for the entire thing and met us afterward also.  He said everything went perfectly as planned and that they used DR. Healy’s surgery as a GPS system to see where he has already treated and that these new cells are on the periphery of what was already done.  He thinks we are to have success in this endeavor.  I sure hope so since this morning, I am still in pain but this is to be expected.  I also got another shot from the pain team to see if that would tide me over until the last radiation treatment on Monday.  Hopefully we can get to the root of this pain and get these cells out of there. And of course, the meds that usually knock me cold did not work yesterday.  I am certain between the steroid and my anxiety they didn’t have a chance.  I am so much more motivated about getting at this disease now that we are really in treatment. Waiting is not a good place for me.  It is also important to see other patients who have made it through much worse that I am facing.  It does not make it easier, comparison grief doesn’t work here, but it motivates you to keep hoping and believing in possibilities.

Today, I am cutting my hair very short.  I have decided to get used to looking at it since even though I know all of it will be gone for awhile, I will grow it back to this haircut faster that what I have now.  I have a beautiful friend with magnificent grey hair.  I  have asked her many times how she stopped dying her hair and just went grey.  She said it wasn’t easy but people do it.  Here’s my chance to see if I like being grey afterall and if I could even look a little like my friend, I would be lucky. She also makes a mean lasagna.

Back to getting some food in and taking the meds.  It should be a quiet restful day and I am looking forward to the next treatment tomorrow.  I am so grateful for all the well wishes and follow-up calls I received yesterday.  They really helped me keep my head on straight.  But the voice of the angel……how lucky am I?

DON’T EVEN KNOW WHAT TO SAY

I cannot think of anything to share today since I am feeling very low and am trying to pick myself up.  I still cannot believe all of this is going to happen again.  I thought we had it made and I thought I was returning to my old life.  See what thinking get’s you? LOL.

Rea and family are leaving today.  They spent the whole week which was wonderful entertainment and a great distraction for me.  It was a pleasure watching my child and grandson growing in front of my eyes.

Today is also the beginning of the radiation therapy.  I am very scared and I know Jan is feeling the fear also.  It is not supposed to hurt which is good but the pain I awoke with this morning was the worst ever. I am so afraid these cells are moving so much faster than we are.

I keep thinking about getting that short haircut to prepare myself for the loss but Jan and others have been trying to talk me out of it.  Just let it go and then decide.  

I am going to get some kind of food into my system and then take the steroid for today.  It doesn’t let you get much rest during the night that’s for sure.  So I will try to rest again this morning.  Therapy begins at 2:30.

I am grateful to wake up to Yonah’s toothless smile and all that he has to tell me this morning.  I am also so grateful for all the get well messages being sent through my friend, Susan Simbol from my colleagues. I miss them so much. And then for all the others who are sending their prayers, going to shul each day and remembering me, placing my name is the wall in Jerusalem, and others I am not even aware of but know they are out there.  I feel an obligation to get well not only for me but for all of those who have supported me all along this tough road.  I hope I don’t disappoint any of us.