People Asked How Do I Get Through My Fears of Diagnosis and Treatments?

 I first remembered in the fall of 2009 the deep fear of the unknown when I lost a lot of weight and had daily nerve/muscle body pain attacks and nobody understood me including my doctors for a long time.   I did not want to go through this long period of the unknown again but glad that was over.   As you know, I work as a clinical social worker, I had quite a bit training on assisting clients managing their fears, anxiety, and panic.  One of the strategies is thought stopping strategy which is what I used for myself.  I decided that I had to use one line of a song to carry myself through anything that felt scary.  One childhood friend taught me just one line of 1960’s Supremes song:

“STOP!  IN THE NAME OF LOVE, BEFORE YOU BREAK YOUR HEART …”.  That was it.   I mentally verbalized that line over and over – when I was wheeled into surgery room couple of times, when I smelled of hospital cleaning supplies, when my heart uncontrollably started beating fast, when I inadvertently thought of the worst what would happen to me, when side effects became worse and so on.  Then after thinking of that line, I would start making up lines like:
“STOP!  IN THE NAME OF LIFE – YOU MAKE IT RIGHT!  YOU GO DOWN THE STREET, YOU MAKE YOUR DAY SWEET, GO LOOK IN THE WINDOWS, AND GO SHOPPING AND STROLL AND BUY CLOTHES!”  These lines change all the time because my chemo brain doesn’t stay the same, ha!  Anyway, my thoughts would wander away to more mellow POSITIVE thoughts.  That helped me a lot. 

Speaking of positive thoughts, I learned that from being a member on the Cancer Survivors Network that sharing stories help us think more positive and be supportive of each other – to other survivors.    It is that powerful!! They now are my best friends – when one does not post a comment for a while we would ask “Where is  So and So?” because we make sure others do not give up and that includes advocacy related to medical issues.  But I must advise that this online support group is NOT the place for final medical answers but rather a guide to avenues for healing.  Other ways is to relax using yoga when I can use it plus deep breathing techniques and also using humor in appropriate situations.  Also, most important of all, YOU,  family members, friends, co-workers have reminded me to keep thinking positive with contacts, etc. - I am really grateful - you do make me feel stronger!   You are Life!  Thank you, thank you, thank you. 

Right now, I dread the weakness I feel now related to chemo effects.   I cannot do anything or my body would ache big time if I become more active.  So I am resting, reading, typing, talking and eating as much as I can!  At least, I can eat peppermint chocolate bark ice cream, yummy!

Results of my Scans

Last Tuesday, I had to get Neupogen shot to get my WBC up and on this same day, I had to eat only meats and about 5 kinds of vegetables and no carbs then drink barium to prep myself for the CAT and PET scans the next day.  I felt out of sorts.  The next morning, unfortunately, I had a hard time keeping this down and had to go to the bathroom often during the procedure but was able to complete these scans successfully.   Then I had to wait until today to get the results so it was a LONG wait~  anyway, my oncologist is out on vacation but my regular physician assistant, Lisa who works closely with him spoke with him about my results and the answer is that "there is interval resolution in so and so areas" which means my cancer has disappeared here and there - in ALL areas!!  So that is good news!!  BUT I still have treatments to finish until January 25th. Huh!  The reason is that they want to be totally sure that I am clean.  Now with this good news in my head, I had to walk to the infusion center to receive my 9th chemo this afternoon!  I felt half happy and half sad - am feeling the side effects of chemo now.  Specifically, my tummy hurts a lot so am drinking Gaterade and broth and crackers.  But I am feeling different now and already am seeing flicker of light at end of the tunnel - yes it is coming....  

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I am new to managing my blog here and was not aware that I never enabled the comment section which is why I never received comments from my audience.   I got alerted so fixed this problem.  You may make a comment at end of my post.  Sorry for the inconvenience that may have impacted on you in trying to make a comment recently.  Please be aware that in order to prevent from spam type of comments coming in, you need to type in letters that you will see on this screen in order to get in to post your comment.

Thanks very much and for your sincere support.

Liz

Update of this week - Dec. 1st

I had the chemo last two days ago.   The recent blood transfusion did the trick by gaining energy in me in weathering my side effects to a minimum.  Still, I feel very bloated and my stomach feeling like being stretched 100 miles thin so I had been able to drink only broths, gaterade, soups, then rice pudding and noodle kugel and later chicken casserole, etc. that family members and friends have made for me and Ric (now spelled as Ric instead of Rick).   Thanks to all of you who did the cooking!!   I do experience other side effects but I don't think about them right now, smile.

I will have PET and CAT scans next week and hope to get good results and see how much I progressed.  I will find out by 3rd week of Dec.  I expect to continue my treatments until January, though.  I have to thank my husband, Ric as a WONDERFUL caregiver and warrior.  He has kept me going through my high and lows tirelessly.  Here is the picture I use on my support group site of Cancer Survivors Network (CSN under American Cancer Society - a great group):

Inspiring Fighting Spirit in me - See this!!

I recently had a wonderful blood transfusion that got me out of my extreme fatigue.  I feel now I am more in a fighting spirit, although, I do get lows from time to time.  I found this picture from somewhere online and identify this to fight against my disease.  Yeah!!! Here it is -  Chewbacca on a giant squirrel fighting Nazi’s (courtesy of Deviantart’s gamefan84):

Treatment in the last 2 months

I am supposed to have 6 rounds of chemotherapy which equals to 12 chemotherapy treatments every other week meaning that I take a break every other week to give my body rest.  So I believe that is why it is called "a round" - chemo week then off week - alternating weeks.  I finished 7 treatments (since August 23rd) so next one, I will be done with 4 rounds on Nov. 30th.   In total, I may be done in late January.  The experience of this is really not easy!!!  But I am hanging in there.  Normally, patients going through this have lower blood cell counts, thus, having lower immune systems.  So I have to stay away from what my oncologist calls the 3 M's - no malls, no movies and no metros or crowds of people.  On the off weeks, I have to get injections to get my white blood cell count up and last Friday, I got my first blood transfusion to reduce my anemia.  Wow, I feel much energetic.  Last Tuesday I got chemo again and feel more tired as expected but comparatively, I feel much better than the first week of treatment which I already was anemic which is why I was not able to do anything until then.  I now look forward to type more posts - I try to do this more!

It is really wonderful having family, co-workers, and friends reminding me that Life is still good and bringing me cheers in different ways.  Thanks to all of you!!  This really has made a difference for me.

The Summer of 2010 and the Diagnosis on August 6th

I was just reading my beginning of my blog - wow, I really blurted my words out of my head because I had NO energy to type at that time so I typed FAST (alias I meowed with effort) before I went to bed to rest!!!  I made it by doing that in 3 minutes, grins!! Hope I made sense.
Anyway, every week, I get more tired since about June.  Last July, I learned that my daughter, Leah would get a leadership award on July 7th (on her birthday) at the National Association of the Deaf convention in Philadelphia.  I knew with limited energy I had, I had to go and see her get it.  Luckily, my son, Daniel was able to drive us there.  I was able to hold up well and enjoyed meeting people until the last day, I just crashed.  After coming home, I was having body pains. I had my lymph node biopsy surgery done as planned on July 30th.   I went back to work.  Without warning, I barely was able to drive then on Tuesday, I asked Daniel to drive me to work, suddenly, I became too dizzy, I gave up and went back home.  On August 6th, I got informed that I have Hodgkins Lymphoma.  I was shocked and my life changed in an instant and realize how precious Life is.  I learned that this disease is highly treatable (90%).   I was too weak to go back to work and that was the last time I was in office and did not even had chance to talk to anyone before going on medical leave which I felt was pretty cut off.  But I was feeling in a survivable mode ready to fight.  Next came a full week of tests and doctor appointments to get my ball rolling for treatment.

The Beginning of a Surprise - then called as a "Mystery Woman"

In the summer of 2009, I had ovarian cyst removed (benign) then after that, I went downhill - I had 2 things going on the same time - going through surgery that was not related to lymphoma.  Anyway, later that fall, I began to have occasional night sweats, low grade fever - just warm - not with thermometer but generally feeling very fatigued and had severe joint/bone/muscle/nerve pain attacks all over my body, especially at nights so I had to take large dose of Ibuprophen and that did the trick.  Then in November came the enlarged lymph nodes. My dr. gave me antibiotics and told me it was just a "virus".  I went to different specialists: hemotologist, ENT, and rheumotologist with no real findings.  Still I was not satisfied so I changed to a new doctor and in January, she advised me to take vitamin B12 injections, iron and other vitamins which helped a bit.  The body pain went away and my energy came back but only til few months later, I had fatigue attacks again and my enlarged nodes appeared again plus those new ones in my groin.  My doctor said in April that I am a "Mystery Woman!" because of those symptoms!!   Finally in June, she ordered the lymph node biopsy to find that I have Hodgkins lymphoma on August 6th.  What a shock - I felt my surgery of the cyst, those antibiotics, vitamin regimen delayed in finding out my diagnosis by one year.  I wish all doctors, including 2 doctors I saw would be educated simply about those symptoms because 1 in 6 people have cancer ... why can't doctors know generally about this stuff?  I am learning that I have to be more of an advocate for myself and perhaps use hospitals or clinics or practices that have good support updated systems.

Hello, Folks!

First of all, I want you to know that I am in the middle of my chemotherapy treatments to treat Hodgkins Lymphoma.  Things have been going on fast for me so I have not had the chance or have the energy to reach out every one of you to report what is happening with me.  It has been crazy but very hopeful!! So I decided that I am doing this blog so I can be in touch with you, even though, I much rather individually connect you other ways but that lately has been a challenge for me.   Whatever, all of your thoughts, prayers and hopes do help me greatly.  If you wonder what happened.  Let me go back to the beginning what began my journey as a "Hodgkins" traveler!  Please read my next post.