Feeling Lost

Christopher

Feeling Lost

Christopher

First let me say I appreciate and have benefited from reading everyone's stories and thank you for sharing your experiences.  I honestly don't know what I hope to gain through expressing my experience but perhaps just the opportunity to "get it out" will help me better understand and hopefully give me the strength and confidence to understand my Mom's situation and become  emotionally equipped to support her. 

My Mom, now 61, was diagnosed with Breast Cancer 3 1/2 years ago. She underwent a lumpectomy followed by radiation therapy and Chemo.  All subsequent prognosis and status was good.  In June of this year, a recurrence of breast cancer was identified in the same location, and apparently measured at less than 1cm. 

She again began the process of diagnosis and treatment planning but was experiencing other effects like soreness in her joints (right knee and shoulder), fatigue, significant general pain and discomfort. She  consulted an Orthopedist for the knee and he referred her back to the Oncologist as he had confirmed metastasis of the BC to her knee.  She was going to begin Chemo but in mid August, she broke her left tibia while trying to get out of a chair.  During X-Rays a black area was identified at the point of fracture.

Obviously, several more tests took place that had confirmed that her BC had metastasized significantly to her bones in the shoulder, right knee, left leg, and back.  She had a rod inserted into her left tibia to stablize the leg and was given a bone strengthener to help prevent additional fractures. She stayed in the hospital for a week and was transferred to a rehab facility (glorified nursing home) to begin rehabilitation of her fracture.

While there, she began radiation on her right knee to help facilitate her rehabilitation and progression to mobility.  Her Onc. delayed beginning Chemo while she underwent rehab for the fracture in hopes of increasing her mobility and eventually getting her home before dealing with the effects of Chemo.

During this time her pain levels fluctuated and the obvious emotional and mental effects set in.   Visually, her status and appearance began to deteriorate to both my family and her friends.  Her strength and general will to do OT and PT began to subside.  About a month ago, further tests confirmed that Herceptin was a possible treatment option and she began those treatments relatively quickly thereafter.

On Monday, she was transported to the Emergency Room with a fluctuating heart rate that was peaking on the 175 to 210 BPM and oocasional shortness of breath.  At this point, we are unsure what is the potential cause of this is.  Last week she came down with symptoms of a cold or or infection and was given Penicillin by the house doctor at the rehab facility.  However, her medicinal chart at the facility did not log her cancer treatments adminsitered offsite so the first impression was a possible reaciton between the antibotic and Herceptin although that has not been confirmed.

She has been given medication to stabilize her heart rate and was admitted late Monday night.  Her current situation has me concerned because my father and I have not really been given any kind of expectation or prognosis for her cancer.  Her speech has changed, she is constantly fatigued, fading in and out of sleep randomly and is extremely weak and lymphodema in her arm has worsened to the point of massive swelling and discomfort.  I am sure that the medications she has been given, between the heart medication, pain, depressive treatment, etc. have a direct effect  on her physical state.  But within a short few weeks, she has gone from utilizing a wheel chair, beginning the ability to use the restroom and getting in and out of bed, to  completely bedridden, needing to be fed (when even interested in eating) by family, friends or nurses. 

Her Oncologist met us at the emergency room and conducted an additional physical exam and identified several new surface lumps on her chest and back and confirmed that the Herceptin was not returning favorable results on its own.  A series of tests have been ordered, includng an open MRI on Friday.

Her Oncologist communicated to my Dad and Mom Tuesday that we had a "window of opportunity" to begin Chemo and so she received her first infusion yesterday afternoon along with an infusion of Herceptin. (Unfortunately I do not know which Chemo she has been given). 

I can't even imagine and don't begin to believe what my mother is going through right now and wish everyday I could take her place.  However, unlike her first battle with BC, and her willpower and determination to beat it, I don't know how to deal with, feel, support her, or have expectations for her.  I am honestly afraid that any day, could be the worst at this point.  Yet, her doctors appear optimistic but still don't have answers to a) has her cancer spread beyond the bones, b) is the heart situation related to the cancer, c) is her cancer beyond a reversable state, etc. 

I guess mostly I am caught be surprise at just how much had changed from June to August, and then within the last week.  I don't know what to expect, I am afraid to have the "worst case" and "all the things you wish you had said to a person before they pass" discussions with my Mom because I want her to fight, and she says she wants to fight (which I do believe by her willingness to undergo Chemo in her current state).  I feel like there are things I want to say to her, but don't want to send the wrong impression that may affect her mental approach if there is a strong chance to get better. 

Having always tried to be supportive and strong for my Mom, I am now understanding the emotional and physical impacts Cancer has on family and friends.  Yet I don't even know where to begin to understand my thoughts and feelings.  I want everything to change, but can not stopping thinking the worst.

I know I need to talk with her Oncologist and better understand her status today and hope that will answer some of my questions.   I hope everyday that my Mom's condition begins to turn for the better.  I know that only time will tell.  But I wish I could understand things better for myself, so that I can be more supportive and strong for her, and for my father, who has been with her as much as possible everyday since she was admitted to the hospital in August. 

Thank you for reading our story.   

Shirlann

Hello Christopher, I read your story and I know suspect I know how you feel and what you are going through.  My daughter-in-law died of Pancreatic Cancer about one year ago, and we were all faced with many of the same concerns that you have expressed.

First of all, I would sit down with the oncologist and pin him down.  Tell him, "I want to know what my mom's prognosis is, and I want to know right now."  He may waffle, but he will realize that you mean you really want to know.

Often, families and patients really don't want to know.  They just don't.  And the docs and oncs try to give out information based on what they perceive as the wishes of the people involved.  They are very kind in this way.

I am sure you know that breast cancer (or any cancer, for that matter) that is metastasizing is not curable.  This is not to say that many people do not live a long, long time with mets, because many do.   

She could respond well to a different chemo, rally, and live several years.  And often, the oncs don't want to take this hope and very real possiblity away from either the patient or from the family.

So they are in a tight spot.  The reason?  They truly do not know what will happen.  They truly don't.  Cancer is a fickle and evil disease.  They never want to take away hope, but if you really want to know what he/she thinks, generally, they will tell you.

Now, if the news is, that your mom is quite ill and doesn't appear to be rallying, my advice is to talk to her.  I missed the chance both with my mother and father and with my in-laws and grandmother to tell them exactly how I felt.  I was afraid I would scare them.  But, oh my, how I wish I had taken a different direction.

With my daughter-in-law, her cancer was so devastating, they told her right up front she had 8 to 12 months to live.  This allowed all of us to say exactly what we felt.  I held her in my arms and told her how much I loved her, I told her she was a perfectly wonderful mother who had raised two beautiful children.  I told her she was a beautiful and delightful daughter-in-law that I loved.  I told her I would miss her and cried into her hair as I hugged her.  We cried together.  I said I didn't know what I would do without her.  We cried again.  Now, I would give anything I own to have the opportunity to tell this to my own mom.  She had a severe stroke, and I was afraid I would scare her, so I was "cheerful".  Maybe this is the right thing to do, depending on you and on the sick person.

But oh how I wished I had grabbed her up in my arms, kissed her all over and told her that she was the best mother in the world and I loved her so much, God alone only could know how much she had given me, and how much I would miss her.  I would give anything I have to be able to tell her this.

So the dillemma, you don't want to scare your mom, you don't want her to think she is dying, and you don't want to take away her hope for getting better.  But so few of us ever get the chance you have now, the chance to say what you feel.  I think maybe you can do this.

So just maybe you could say, "Mom, I know you will get better, but I wanted to take this minute, while it is quiet, to tell you I love you so much, more than you could ever know, and that you are such a huge part of my life,  my memories, and I just wanted you to know this.  You have always been a wonderful mother, all the Christmas', all the birthdays, you always make them so special.  I remember our vacations and the Halloween costumes.  I just wanted you to know I remember all those great times we share".   

I would love to hear this from my boys when my time comes.  You have this opportunity, so if I were you, I would take it.

Gentle hugs, Shirlann

Pheebsforthecure

Christopher,

 Make sure you talk to the oncologist as he/she will be able to let you know how they feel about your mom.

My mom's oncologist was very good as in she even gave me her home number. At the hospital, my brothers and I gathered around the phone and spoke with her on the speaker phone and she told us what she feels will happen in the future. It really helped all  of us and placed us on the same page.. since sometimes members of the family feel differently about the situation.