Tides are changing

The tides are changing......nothing ever stays the same. One day I am at peace with my cancer, the next I am in a panic.

Yesterday was a tough day for me....I had a CT scan that was scheduled for 630 pm. If you have ever had a CT scan you know you drink the barium smoothies......yesterday I drank one for breakfast, a thick fake vanilla flavor concoction that made my stomach do flip flops, then one hour before the scan I drank another one. The second one was harder to swallow. I wanted to gag as I sipped 32 oz of this liquid torture but held it in. My stomach felt betrayed, craving a meal and instead getting the barium. I thought I would drive myself to the CT scan, but my friend called me as I was getting ready to leave and said let me take you. I wanted to say no, but inside I wanted company...just knowing that someone would drive me when I was feeling ill and scared gave me comfort. We drove to the appt. and I was so grateful to have company. This weekend I have an art show.....usually I am excited and prepare for weeks. I have not done anything to prepare for this show and am fighting with myself to call and cancel. I am not in the mood to put on a happy face mask and talk to people about my photos and art. I have lost interest at this moment in time. I know I will be happy to see old friends and I always like seeing the way people react to my art, but my mood has changed.....my life has changed. Art was theraphy for me before, now for some reason I am struggling to hold on to my love of painting. I listened to a song called Rehab yesterday by Amy Winestock....there is a line where it says " They want to put me in Rehab....but I say no, no, no....I am just depressed." I think I am just depressed.....and I hope the tides will change so I can find my love of art again.

Best friend forever

Best Friend Forever is a term I remember using when I was in grade school. I never thought I would still be using it today at my age. My best friend forever is a guy. He started out being friends with my brother, but we ended up being friends and our lives have been interwined for over the last 27 years. My friend has gotten up in the middle of the night to be at my side when my mother was dying. He has been the stand in father for my daughters, he has been there for me when I was sick and when we were celebrating happy moments. The picture was taken last month when he treated me to a SF Giants game with his coworkers. He hovered over me like a mother duckling making sure I was comfortable and happy. I can not imagine my life without my BFF. This morning as I write this I am listening to his favorite singer John Legend who my best friend took me to see last week. We went to the concert with his friend Sandra pictured with him above and my young daughter. The four of us danced and laughed to the smooth music of John Legend, and I forgot for a few hours that I had worries. I can not imagine my life without my best friend. He has added laughter and love to my life during times in which we have both struggled. We can go a few days without talking but always know that if either one of us needed the other, none would hesitate to be there. During ones life people come into your life and mark their stamp on your journey....some people leave and some people just grow apart. My BFF and I have changed but what has never changed is our friendship. It has weathered storms and challenges. It has stood strong when life tested us. We know that when we say to each other that we are having a "chocolate day" that the other will be there to help put the pieces back together. He has been my mentor and I have been his. It can not be put into words what my friend Manuel has meant to me, I can only say that his friendship has been a gift that I have cherished and loved forever. I hope everyone has a BFF like mine.....but I am not willing to give him up, even for a million dollars.....well maybe two million dollars...just kidding. Our friendship is a true one and worth more than anyone can imagine. During this time in my life I am grateful and happy to say I am lucky to have him as my bff. I hope he knows in his heart how thankful I am that he chose me to be his friend and has stayed my friend.

It says it all

Many Paths

There are many paths in our lives. The roads ahead constantly change and we must adapt or we loose our way. My path has changed again. On Friday I saw the oncologist. I had been dreading this day, knowing inside I was to be given bad news....it's funny how your body tells you something is wrong. It is like being gifted with the power of knowing the future. My visit was not a good one. I wish I could write...hey I am in remission or I am cancerfree.....but alas, that nagging voice in my head was right. I am not in remission I am full of cancer. The doctor said he was baffled on the fact that the cancer has returned so agressively. The pelvic mass is growing larger and pressing againest my bladder intertiwened with viens etc....untouchable to surgery. He said he needed help....wanted more doctors to consult with. There are tumors in my breast area....painful and to be honest heartbreaking. I listened to him say he did not know what to do. I said how can this be....you deal with cancer each day, how do you not know what to do?? He looked at me with saddness in his eyes....and said I can give you some more pain meds, something to stop the urge of having to urinate and order more tests. I am stubborn....I left his office and went to the business office......I said I want and need a 2nd opinion. At first ...they tried to refer me to another doctor within their system..I said no. I want to be seen by someone else outside of the Kaiser Group. I told them you are paid double for my care.....since I have double insurance.....therefore I deserve to be seen by a better facility or doctor. The woman said...if you can find someone, to see you...you have the right to that. I called the Cancer Center Hospitals of America located in Seattle Washington. They were very nice.....we have a cancellation for tomorrow she said......can you come in? I live in California..but yes I will be there. I called my husband, told him I was going to take the next flight to Seattle....I said like a child....Can I please go? He was in a meeting....hurridly said yes. I got online, found a flight,hotel and rental car within minutes......I had to be at the airport within the next 3 hours. I threw whatever I could in a duffle bag....in a frenzy....not knowing what the weather would be....not knowing what I would need.......not knowing what to expect in a city so far away, and one that I had not ever visited.

I had not told my oldest daughter of my latest cancer news....I did not want to distract or ruin her law school graduation....but I was leaving now....my daughters had to be told. My youngest was teaching class, so I left her a voicemail explaining as best as I could that I was leaving for a second opinion this very minute. I told her I loved her and not to worry in my bravest voice. I then texted my older daughter, the same message...she was in a law review class. She left class crying, asking why didn't I tell her what was going on. I told her, I wanted you to have your day......free of worry.......free of being the child of a mother with cancer. She said I want to go with you. I said no. I told her I needed to do this journey alone. I needed to have time to cry and be angry and not be a mom and have a brave face. I needed time to finally grieve the fact that I will never get better. She again asked to please let her come with me. I told her I need this time.....I won't ask for time alone again...but I need this.

I flew to Seattle....a city I had only seen in movies and in pictures. I rented a car, and followed the instructions to my hotel...in a daze. I was so focused on finding the hotel that I did not notice that just down the street was the space needle. 8 blocks away was this huge tribute to science...yet I did not notice until Sunday. The cancer center people were nice...they were blunt. I was told lose wieght, change your diet, but alas....the news was the same...the mass was untouchable at this moment.....they did not agree with taking the meds for pee urgency...said I could not control my internal tempurture with it and it could hurt my kidneys. Said loose wieght and the mass won't press so hard. I did not get the answers I wanted. I did get the chance to cry, grieve and be angry. I explored a city alone....walking the streets..alone in my thoughts seeing the sights...crying that I did not get the reprieve I seeked. I saw the fish market....indulged myself in carriage ride around old Seattle and being the non drinker went to a bar and drank trying to drink away my sorrows. The drinks did not wash away the pain. The bartender asked if I was a tourist...I said do you want the truth? I am dying...and came here looking for answers, but I did not find any. As I walked back to my hotel I looked up....saw the space needle, laughed that I had not noticed it before. On Sunday morning it was raining....I had only brought summer clothes...so I went to Macys and bought some approiate clothes. I then went to the space needle...rode the elevator to the top and marveled at the peace of being 650 feet in the air. I had a cup of coffee and just sat and looked out......saying to myself I will come back to this city with my girls and let them see the beauty and friendliness of the city. Everyone I talked to was nice. On one morning as I was trying to get my bearings to get on the freeway to go to the cancer center....a homeless man was running down the street carrying a pizza box. He stopped...stared at me and said "want a slice of pizza?" I politely declined and he ran off. This city was full of people so friendly that even the homeless was helpfull.

I flew home on Monday......upgraded my ticket to first class.....and came home.

I came home to my family. To my reality of my life. I have a CT scan tomorrow....but I already know the news. I am a cancer patient....no longer a cancer survivor.

paranoia

I see the oncologist tomorrow....found this poem that sums up my feelings

Paranoia
Copyright© By Linda Nielsen
I know I have aches and pains,I've had them both for years.
But now each brings a panic,and a fresh new set of fears.
If I even feel a tiny bump no matter of its size,
I feel my cancer has come back,to claim another prize.
Fear is with me all the time,it haunts me night and day.
To think this batch of cells gone wrong, just yet might get their way.
The doctors nod when I dash in,and send me on my way.
Assuring me that once again,I'm really here to stay.
For in a car I could crash,or get stung by a killer bee.
Maybe take a header down some stairs,this all could happen to me.
I have to learn that dangers lurk,and recurrence is but one.
But not worrying over trivial things,is easier said than done.
Having lived through such a scare,it's hard NOT to be afraid.
For if they'd only say I'm cured,I'd really have it made.
I know in time this will subside,my worries should be less.
Life for me will once again,be filled with happiness

Graduation

Today is Sunday and my daughter transitioned from law student to Lawyer. I have never felt so overwhelmned with emotion. She has been in school without break for 22 years starting with preschool and finishing at law school. We had a lovely party with friends and family to celebrate and it was surreal. I still can not believe she is now going to begin to study for her law license. She has a job as an Assoiciate Lawyer waiting for her when all is done in August. She not only transitioned from student to lawyer but from child to adulthood. In the midst of all the turmoil of taking me to chemo, losing her grandmother, she prevailed and finished. They gave out awards and she did not recieve any, but for the young woman who battled againest all odds and to have made it ....is a true sign of achievement. If there had been award for the one who worked full time, took care of a ailing mother and always smiled.....she would have won. She is a winner in my eyes....She is the top of her class in my heart. She is my daughter!

Law School Dinner

Last night my oldest daughter's Law school gave a graduation dinner for the class of 2007 and they each were allowed to bring two guests. My daughter invited my youngest daughter who is her roommate and me to be with her at this dinner. All week I have held my cancer secret, but finally told my youngest daughter after an overheard phone call. I made her promise that this weekend was a weekend of celebration and not that of anxiety for her sister. She promised and we made plans on attending. In a moment of self indulgence I dyed my hair back to the color of precancer and had it cut into a sassy cut that was me before the dreaded C word came into our lives. I bought a new dress, put make up on and drove to Sacramento to meet up with my girls....listening to the CD of Martina Mcbride. I never was a country fan but heard a song on the Today show called "In my Daughters eyes" and the words felt as if they were saying the things I want my daughters to know. The song has a part where if you look into my daughters eyes you see that everything is going to be alright. You see all the possibilities of what life was meant to be." I see my daughters and I want their lives to be wonderful and for them to reach for evey shooting star.

At the dinner, my lovely daughter introduced me to the people who started law school with her. Her class was over 175 when they started out and now only 43 remain and are graduating. I got to meet the people who she talked about, made jokes about and helped change an awarkward teen into a woman with grace and beauty. I sat back looking around and admiring how at ease she was...laughing and talking with her peers who will be her companions in the legal world. She beamed with such pride that my heart melted. My daughter was not the first in her class and to be honest I do not know nor care what her standing is. All I know is that she is well liked by her peers and professors. Her class was so diverese....there were people who had decided to change jobs mid stream in their lives and become lawyers, others about her age, wives and husbands all who worked so hard to study and maintain jobs to finish school. There were funny stories traded at our table.......listening to them was like being a fly on the wall of the antics and the hard work they all accomplished. There was a funny moment when the number 2 of the class was to speak....but had a few too many drinks and could not say a coherent sentence. She was saved by another student who graciously stood up and made a speech about thanking those who helped them through the journey of law school. They handed out a yearbook of types where each graduate listed their awards and made a personel statement. My daughter did not win any awards....but decided that as a joke she would list that she was Miss November of the Lincoln Law School calender......there is no calender....but the funny thing is that many people came up to congraduate her for being Miss November. She thanked me in her personal statement which made my heart swell with joy. She thanked her dad, and her sister. Then the dean gave out awards that some graduates made up to thank the person who got them through Law school. Spouses were called up to recieve how they put their spouse through law school and it was very touching. Then a few thanked their parents. Then my name was called and my daughter was awarding me the magna cum Labor award to her mother for believing in her and helping her make it through school. I was surprised and again my heart was overcome with joy. A piece of paper with a gold seal that me cry. This was a gift I had not expected, one of those Ah-Ha moments in life that you could not duplicate. I have always been proud of my girls, but this made me even more so. I think the smile is still on my face. When I got home and told my husband of the dinner and showed the personal statement that she wrote to him, thanking him for working so hard to pay for her to go to school. He began to cry. This is the man that never shows emotions but was overtaken by a few sentences from his daughter acknowledging him and his part in her story. In the midst of a cancer crisis my daughter managed to erase the fears for now and let the world seem normal and wonderful. I called her after seeing the reaction of her father and told her of his tears.......they have not gotten along in a very long time but this simple acknowlegement and thanks melted away years of hurt and disappointments. She cried when she heard her dad cried. Again a moment of sheer bliss and amazement. Thank you God for giving our family this moment in the midst of all that has gone on. Thank you God for giving us joy this weekend. Sunday is graduation, and I am walking on clouds.

The Pelvic mass

I had a sleepless night, the pain in my stomach and right armpit area reminding me that all is not well. I send an email to my lupus doctor and Oncologist.....hoping the pain is Lupus but knowing by the fear rising in me is that of panic that one who lives with cancer knows so well. Six more days until my daughter graduates from law school....I feel alone in my fear, for I do not want to share news so close to her big day for fear of spoiling it. I want her to concentrate on her bar review classes that she is now enrolled in. I do not want another cancer set back to distract the family. I am worried, and the funny thing is that I am worried that the gift that I have purchased for her is not perfect for her grand day. I want to give her more yet I know that I should not touch the funds I have set aside for my eventual funeral. For even in my inpending death I do not want to be a burden to my family.

My lupus doctor emails back....to take more pain meds and wait to hear from the Oncologist......Finally an email comes from the cancer doctor and he says that the pelvic mass (tumor) is putting pressure on your bladder and a biopsy is too dangerous, because of your history we can assume that the Lymphoma is growing larger again. He wants me to make an appointment so he can touch the painful lumps in my armpit breast areas......he says he does not want to subject me to the harsh chemo again but perhaps this is a course we should talk about. He talks about the quality of my life versus the aggressive treatment. The quality of my life right now is crappy.....I am in constant pain and in mental turmoil over the ever growing cancer. I am in mental anguish over spoiling my daughters big day.......I want to be hopeful but honestly can not find any hope right now......I feel lost.

Mother's Day

Today was mother's day, and it lived up to my expectations and more. My daughters took me to my favorite formal English tea shop and we had high tea. The tables were covered in linens and lace and we picked out our tea and tea cups to be used. Then a three tiered tray filled with treats was served. We nibbled on tiny sandwiches, cookies, tarts, and of course scones. Homemade lemon curd and devonshire cream is served to spread on the scones and we are transported back in time when ladies enjoyed an afternoon tea. The owner of the tea shop always remembers us and makes it a point to bring over a special treat.....today at the end it was moist pound cake with a sweet cream. The girls and I reminnissed on how busy this week will be. My oldest daughter graduates next weekend and has left her job on a leave to take classes in order to pass the bar. My youngest daughter is working and still studying trying to decide if she wants to get her teaching certificate or join the police department. We talked about how blessed our lives have been......and compared to their friends how well traveled they are. We have swam with the stingrays in the Caymen islands, watched broadway shows in New York and shopped in New Yorks finest stores. We have parasailed over St Thomas, visited the Dutch and the ever risque French side of ST. Maarten. We have traveled to most of the National parks, liking the Grand Canyon the most. They have gone skiing in Tahoe and Vail, and visited the pyramids of Mexico. This summer we three will go to Hawaii....all of this so that the girls will have memories to tell their future children and we have bonded over our travels. We have bonded over the simple things in our life. Today Jennifer asked to drive my car home from tea shop to my house. A 30 minute trip that would include going on the Freeway. She is in her 20's and never wanted to drive until recently. She has had a few lessons and I am the nervous type but when she asked her eyes had confidence and I knew that chance may not come again. So off we went, Jennifer driving and me smiling but nervous as hell. At one point she is so confident and chatting away, the car began to drift over the lane towards a Semi Truck. I grabbed the wheel and put us back in the right lane....not wanting to scare her, only wanting to save our lives....she looks at me and says " I got this mom." Another memorie etched in my heart and mind.....Funny how when they were little and their tiny hands grasped my fingers I was their hero...but the truth is they saved me. They brought love into my life and taught me how to value every moment. No better feeling than being a mom.......even when your mom is not here to celebrate the day with you.

another sleepless night

Yep, another sleepless night.......I follow my routine, take my sleep meds and you would think my body would fall asleep, but my mind is racing and the sleep I desire is not in reach. Nothing has changed in my health other than I havc given blood so much this week that I think my HMO is actually a fuel spot for vampires. My primary doctor ordered tests.....trying to figure out if some of the physical problems I am having is Lupus and since my Oncologist is out on Paternity leave until next week, my doctor is trying to fit puzzles pieces together yet they do not seeem to fit. I have been in a mood, giving up worrying and succumbing to my fate of whatever will happen will happen. I met a new friend, a former phone company employee battling them as I have in the past. I have enjoyed the exchange of emails....the distraction of having someone else who has experienced the nonsensicle logic of my former employer is welcome right now. An email friendship that in a few days took my mind off the tumor that is growing inside me. Life has a funny way doing the art of distraction.

Just like the chicken who I have named AWOL is now a daily part of my life. When my car pulls up.....she runs from her hiding spot to great me.....it is funny that a hen acts like a dog. She cuckles and I feed her....when I am not early enough for her in the morning she taps on the door...I peek through the peephole and no one is there.....then I open the door and there she is...waiting for her breakfast.

The weather is warm now....last Saturday, my best friend Manuel took me to see the San Francisco Giants. He had VIP tickets from his work and we were treated like VIPS! We got to see the traveling mueseum of the negro league baseball teams and meet one of the oldest living players. Irving Castillo from the old Kansa City Monarchs. You could see in this old baseball player eyes the joy of being asked for an autograph. His manner was that of grace and I felt priveledged to have had him sign a ball. We saw Barry Bonds hit homerun number 744. He hit it on the first pitch and it sailed into the bay, People cheered and I thought......would he have hit that ball if he had not used steriods like they say....one will never know.

This weekend is mothers day. My daughters are planning a surprise......it always includes brunch.....I wonder what they have planned. Last year we toured the mansions in the fabulous 40's in Sacramento. They have been used in movies because they resemble houses from the south. The tour was interesting and beautiful to see how the other half lives....the Sacramento rich and famous who open up their homes and gardens. One year they took me to San Francisco to see one of my favorite artists exhibits...Dega' and his ballerina scuplture.

Who knows what this year will hold but since I have an expiration date stamped on my soul.....I will enjoy anything they come up with.

When you are diagnosed with cancer, the doctor gives you a guess on how long you have to live. I was told 3 t0 5 years.....it has been 3 years......Everyone knows that one day they will die, but when you are told that you have a limited time.....as much as you try not to think of it, the date is always on your mind.

But life goes on.....new paintings to be painted, new photos to be taken, and new friends to be made. Maybe sleep will come soon.....and my mind will rest.

My Last week

My last week has been long and tiring. The old statement if I didn't have bad luck, I'd have no luck at all.....seems to be my mantra. I have still not have heard from oncologist about the tumor, my new dryer broke, relationships with my family is strained, and I just can't shake my mood. I saw one of my doctors today and he told me to just be sad and stop resisting the feeling. That the more I resist just feeling sad, the sadder I will feel. He said saddness was a normal feeling and if I was not feeling sad I would not be normal. .......I guess I want to be abnormal because feeling sad is not working for me. I have not motivation than to sit and be sad. Thinking of the what if's and hoping for things to just get better but not seeing the light at the end of the tunnel. I have things to get done but find myself with no motivation to do them. I pray that things get better...I just pray that I can find some peace.