GOOD NEWS BUT STILL TREMBLING!

[jersey-jazz]

Good News From the Scans. Still Trembling Internally

Last week was the week of scans, consultations, a continuum of lymphedema therapy and anxiety about all the radiation with gadolinium going past the brain barrier and remaining there.

An ultrasound was done because of a lump in my arm. They were looking for blood clots. None were found. In talking to the technician, I learned an interesting thing that some of you are aware of. That is that MBC patients are prone to blood clots.

Because of the continual internal trembling which I have posted about before,, an MRI with the horrid contrast was done on my brain. The technician told me that, often, the contrast has been ordered by the physician when it is not needed. He said that it was definitely called for in my case when brain cancer is suspected because it will find cancer if it is the size of a sesame seed.. A very big sigh of relief was heard for miles when I got the results indicating other things but no cancer! I will be seeing a neurologist about the trembling.

Also, in the week, I had another PET scan. Happily, besides imperfections in an old body, there were no significant RADS going on. The MBC to the liver has shrunk again, this time into insignificance.

Not all the results were in by the time of consultation with the oncologist but. for two weeks, I had not taken any Letrozole to see if that was causing the tremors. The tremors did not change but what changed dramatically was the level of energy I regained for a while. It was just terrific. I made four different kinds of marmalade and jam in five days, then baked bread, cookies and muffins and drove solo over three hundred miles each way for a short visit to sister Carol on Cape Cod. I told the doctor that I was resuming the Letrozole that day last Wednesday but in truth I only restarted the drug this morning, the day after returning from my whirlwind trip.

Not all the scan results were in by the time of the consultation with the oncologist. They were told to me over the phone and there was no real discussion concerning those results. She also told me when asked, my tumor markers were normal but that tumor markers were totally unreliable. (?)

I am left relieved and with more questions. The questions mostly concern what information comes out of blood results and would appreciate any leads to this kind of knowledge. Is there an on-line course somewhere in the world about blood results concerning metastatic cancer?

I wrote before that I can only tell shaggy dog stories and this is an example. Apologies!

I want to let you all know how very much I appreciate all of you who are in this together with me,, actively giving and receiving. It feels very loving and comforting.

XXX OOO.

[MyMiracle13]

I am very happy for you that you had good results. I hope your neurologist can find what’s causing your trembling.

[jersey-jazz in reply to MyMiracle13]

Thank you! Your good wishes certainly help.

X O

[KMBL_]

Congratulations on your scan results. I can feel your relief.

I hope they figure out what the tremors are from. Good luck with that.

[jersey-jazz in reply to KMBL_]

Thank you for your concern and your wishes of good luck. I will see the neurologist next week if not sooner. The tremors are getting much stronger. It's true, though, that I am so greatly relieved and grateful about the results off the scans.

X O

[hdhonda]

Jersey,

Love your great news. You deserved that trip. Know you and your sister had a great time . Now, stay away from the virus. Blessings, Hannah

[jersey-jazz in reply to hdhonda]

Thank you for your blessings. and thank you for your good wishes. I do believe they work in a wonderfully positively healing way.

X O

[8576]

Such great news! Time for a celebration. Great that you got a visit in with your sister. I would love to be your neighbour! Must smell heavenly with all the cooking and baking going on. Wow! Although annoying, it is good those tremors aren't slowing you down. Hoping the tremors get solved. Best wishes.

Cheers, June S.

[jersey-jazz in reply to 8576]

Dear June

Thank you for your cheerful message and good wishes. The cooking and baking is my occupational therapy and, for the time being, my joy.

X O

[mariootsi]

So relieved for your results! My God, you went through alot. Hope you can relax.

[jersey-jazz in reply to mariootsi]

Thank you for your caring message. Tomorrow, this Jersey girl is going to the beach, hopefully, to float in the water and to relax and be happy.

X O

[mariootsi in reply to jersey-jazz]

Enjoy and relax!!!

[Thrifty51]

Nothing significant is such wonderful news when referring to the results of a PET scan!! Sounds like all your testing went well and hopefully the neurologist will be able to totally lighten your burden of worry.

Sending you warm thoughts and hugs!

Best,

Audrey

[jersey-jazz in reply to Thrifty51]

Dear Audrey

You are so right about that! It was the brain scan that worried me mostly. There is no cancer there and that is pretty much all I care about. The other things noted in my brain may be the clue to the internal trembling. Thank you!

X O

[Hidden]

What great news you had, and the making of lots of jam - very rewarding.

Here’s to more good news and increased energy levels.

Clare x

[jersey-jazz in reply to Hidden]

Dear Clare

Thank you for your toast to good news! We all try to provide ourselves with it or when that can't happen, at least we try to be thankful for the good things we do have in this life. Qualities that I admire so much about this group is the caring, the communal spirit and the pervasive love that is so freely spread around.

X O

[Hidden in reply to jersey-jazz]

You can’t beat a bit of raspberry jam on toast - my favourite.

I really like your term ‘pervasive love’ for the site. It is so true. We are a relatively small group of people who are in a position that others probably cannot comprehend. Hence why we feel we can relate and offer support and love to one another.

Clare x

[Hidden in reply to jersey-jazz]

My Mum has tremors that are hereditary as well. She has bilateral hand and head tremors, but I don’t think any internal ones. She is one of 7, of which 4 (all women) have the tremors. She is good for making a frothy coffee!!

Clare x

[BluHydrangea]

So wonderful you got good scan news! I love the details of your cooking and baking! Hang in there!

[jersey-jazz in reply to BluHydrangea]

Dear BluHydrangea

Thank you for your cheerful good wishes. While off the Letrozole, I had all that energy to play in my kitchen to my heart's content. Too bad that I didn't spend some of that energy on the house, while I had it. Now that I am back on the Letrozole, the energy level is decidedly lower. and the house work will have to wait.

XX OO

[BluHydrangea in reply to jersey-jazz]

Good thing.... housework can wait!

[seiler]

I have tremors. They are annoying, but my mother had them, my 2 brothers have them, my daughter has them, etc. One brother, my daughter, maternal aunt and my female first cousin had cancer. I opted for extensive genetic testing because my oncologist said I was "very interesting." My cancer and the rest of the family's cancers are not genetic, but the tremors are. You never know. Neurologists are great, too. Sometimes. The first one I went to said my tremors were due to Parkinson's. They aren't.

[jersey-jazz in reply to seiler]

That is so interesting. What kind of tremors are they? Are they all internal tremors as mine are? Did the powers that be decide what the cause is? It is good to know that it is not Parkinson's, for you and for me.

I ll see the neurologist next Tuesday . It feels like it is the Wizard of Oz time and that I am on the road to see the Wizard but do not possess the complete faith in the Wizard that Dorathy did.

Thank you for sharing your family history of tremors. Please let me know more about them. It takes my mind off the big C.

X O

[seiler in reply to jersey-jazz]

I hope your visit to the neurologist was good for you. I went to 2 neurologists; one said I had the beginnings of Parkinson's and the other said I didn't. He called them "Familial Tremors." They run in my family and are genetic. I simply can't carry anything without spilling, like coffee in a cup. My signature isn't as good as before, either. Everything else is OK, I think.

[jersey-jazz]

Dear Sandra

I really and truly wanted the internal tremors to be caused by the drugs. I have not let go of that idea entirely but it is slipping away from me and idea of it being one of the nervous maladies is replacing it. Thank you so much for taking the time to try to help me figure it out. Next Tuesday I will see the neurologist and hopefully he will have some information for me.

Thank you!

XXX OOO

[kearnan]

At the Brooklyn, NY Cancer Center I go to (Maimonides), my onco nor do the other oncos rely on tumors markers. They believe that are unreliable and prove nothing. I have never asked nor have I ever been told what they are and I am now going on a bit over 2/ 1/2 years.

[jersey-jazz in reply to kearnan]

Interestingly, the oncologist at a satellite of NY Presbyterian never measured tumor markers when treating me before metastasis. Something prompted me to ask her if she did now that the metastasis has occurred. She replied, to the affirmative, as noted above. So much of it causes so many more questions. That is why I would like to take an online course about blood and metastasis, for the layman. Thank you for offering up Maimonides' position on the subject.

X O

[kearnan in reply to jersey-jazz]

I have no idea what my tumor markers are. I do not read books by those who have survived cancer by eating certain foods. I rarely read any articles on Metastatic breast cancer. I do not keep records or charts of how I am doing. Everybody has their own way of dealing with this illness. Good for you, but I certainly would not be interested in taking any online courses or even watching anything on youtube. I find it quite dull and since I go to Maimonides, I trust them to do their jobs. I do not want to spend any of my free time (other than my monthly treatments, and 3 month CT scans) and that is about all I will let the cancer have. The rest of the time is mine.

I never ever took vitamins in my life but now I take Vitamin D with calcium, at my onco's suggestion, to strengthen my bones and that is one pill per day.

I never stress before or after a scan. I never call my onco wanting/needing to know asap what the results are, I just wait until my next appointment and I sleep well the night before I am going to find out. I do not have that scan anxiety that some women get.

The most I do is by joining this forum board and that is about it. From this board, I learned that people have different side effects from the same medication. I also do not think of this as a terminal disease, I think of it as a chronic illness. I am into it three years, to me terminal means you have six months to live.

My motto is "it is what it is." Worrying, stressing is not going to change any outcome so why worry about something that has not happened yet. I know stage iv women who still hold down their full-time jobs as teachers, nurses, etc.

I still eat what I want when I want to (thus being overweight). I can't really blame too much of it on the cancer although sometimes it is easier to do so LOL....

[WordNerdSharron]

So good to hear your good news! I'm so glad you were able to use this energy spurt for joyous activities like visiting your sister and cooking. Being near the ocean is healing and helpful, too.

[jersey-jazz in reply to WordNerdSharron]

Thank you! Now that I am back on Letrozole, unfortunately, my energy is back down. We aren't going to the ocean today because of the threat of rain but I willI be going to Asseteague island National Seashore a week from Saturday. Aug 22. I had booked it back in February thinking that that will be past the pandemic. Silly me! I have a little motorhome which is self contained. So, we'll be safe. Campers are a good group of people. I often travel alone and always feel safe at campgrounds. This time, I am taking my part time boy friend. I am so excited about being at the ocean, floating in the water and hearing the waves at night. I am that very lucky girl!

XX OO

[Teddielottie in reply to jersey-jazz]

Happy to hear your scan results were good and I hope you soon get answers from your neurologist regarding the tremors . The camper van by the ocean sounds idyllic, as well as therapeutic ... along with all the baking and visiting your sis . Enjoy ! x

[jersey-jazz in reply to Teddielottie]

Thank you, Teddielottie for the morale booster. At this point, while I am still able to do these things, I feel that I have a responsibility to jump in to life's adventures and to stand up and be counted.

XX OO

[kearnan in reply to jersey-jazz]

Part-time boyfriend. I love it. Where can I get one? I don't have the patience or temperament for a full-time boyfriend, but a part-time one could come in handy. Mainly, when I need a drive somewhere as I live in Brooklyn and do not drive.

Your trip sounds wonderful. It is nice to be able to get away. I would not know bc financially it would be hard, plus I do not drive and now with the pandemic, it would be harder. It sounds wonderful though. Jealous for sure!

[Hidden]

Hi,

I'm pleased to hear that you received good PET CT, brain scan and other good results. What a relief! I hope your neurologist can work out what is causing the tremours. By the way, I was feeling very envious when I read about all the goodies you baked recently. Your kitchen must have smelled amazing! 🍯🍰🍞🍪

Sophie

[jersey-jazz in reply to Hidden]

Dear Sophie

The kitchen really did smell really nice. Playing in the kitchen is my way of calming down and meditating or whatever. Anyway, it lets me concentrate on one thing and take my to active mind off the worry. It works for me. I wish I could share it with you.

Thank you for your email.

XXX OOO

[Hidden in reply to jersey-jazz]

You're welcome!

[RLN-overcomer]

So happy for your good news, but I do pray the Neurology Dr. will find the cause of the tremors.Amen

[jersey-jazz in reply to RLN-overcomer]

Thank you so much for your prayers! I believe that prayers and good wishes add up and often tip the scales in a positive way. They certainly uplifted me and helped with a positive outcome in 2016 when I had bi-lateral breast cancer. Thank you, again!

X O

[RLN-overcomer in reply to jersey-jazz]

By GOD's grace I am a 13 year breast cancer survivor. The Oncologist I saw back then said I wouldn't live to see 2009, and that I needed to get my affairs in order, because I was going to die. I am grateful I have had N.E.D. for 12 years after treatment.

[kearnan in reply to RLN-overcomer]

See I was wondering about that. Some people describing this as a terminal illness whereas I think it's a chronic illness. A friend asked me the other day if I had an idea of how long most of us survive and I said I think most survive more than five years from what I can tell (but then I guess the deceased are not going to be able to post). I was curious if knowing how long many of the women on this board have been stage iv but that seems too invasive but I am into it three years already. So I kind of think of it has someone who has to go to the hospital for dialysis. A chronic illness that one has life-long treatment for.

[RLN-overcomer]

A Dr. can tell me I am going to die, but aren't we all going to die physically. What would that Dr. say if I approached him today. Is he even alive, and I have no idea of his whereabouts,. Well Dr.GOD allowed me to see 2009, and up until the present with N.E.D. , as per my yearly test, and scans.That oncology Dr. was supposedly one of the best with 38 years of oncology experience, whom I have not seen since my treatment 13 years ago. There are other Dr's that see me as a miracle. If the cancer were to reoccur I would be okay, and thank GOD for 12 years of milestones I got to spend with my loved ones, eg Mothers Day's, Father's Days, birthday's, anniversaries, and graduations that I got to experience which I am still so grateful for.

[Mary115]

Jersey -jazz

I so appreciated your approach. I have realized that I need to go out in nature and enjoy myself each day that I can in order to want to stay fully alive. Alive is not only good but has magnificent moments. Beauty and love is the impetus to keep on going..

At the same time when I am too tired to continue on then I too will thank God for what I have had to the fullest possible sharing in life, that I could. In the midst of cancer and covid and even family turbulence I have again found an appreciation for the Beauty which surrounds me and is in my friends living with cancer.. Solidarity in Spirit of living life as we can in against the odds situations..

Well done us.

[jersey-jazz in reply to Mary115]

Hear! Hear! We will do this!

XXX XXX

[Mary115]

Yes, we are and will do this.. Here is a quote I needed today:

"The fastest road to healing may be play. ... Instead of attacking problems, play works homeopathically. Play welcomes woundedness without making a huge deal out of it. ... Play heals because it takes the pressure off what hurts. Our bodies love to create. ... Our creative energy, like a tide of health, sweeps our challenges in the direction of wellbeing. "

— Cynthia Winton-Henry

This evening I walked a short distance up our road with my husband . No-one was around and we live on a somewhat isolated road. I was in pajamas that could double for an outfit of sorts and was not wearing a bra on my post surgery irregular breasts.. Then we walked back and had ice cream cones. I am proud of me..

Proud of the solidarity of us courageous folks dealing with cancer and more.

My husband and I have agreed that I do not need to be a warrior and keep fighting.

For now I am doing well and latest cat scan showed no growth..

For now I can enjoy what I can.. no longer guilty about enjoying the moments because I am not allowed to do so when others are suffering so.

I can bring a bit of Heaven in the midst of Hell..

Poignant peace too!!

Hooray for us..