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Post about my mom, 59 years old today

Akroger's picture
Akroger
Posts: 80
Joined: Mar 2013

Hi everyone,

It's been a long time since I've posted here myself, but I have been visiting this forum every day and following all of your stories. Even as I've often been too emotionally exhausted or afraid to jinx my mom to post much about her own progress, I've continued to come here to learn and to quietly share in the emotions raised by the updates posted here, good news and bad. For all members new since I last posted (perhaps a year ago?), my belated and sorrowful welcome, to all who may remember my stories of my mom from last year, I am so happy to say hello to you all again. For those who have left us in the past year, my heart has broken a little more each time. There is so much emotion, and not enough words in all the languages in the world to express them all.

As I posted here earlier, my mom was diagnosed with late stage IV colon cancer in February 2013, at the age of 57. At the time I was living and going to school in the Washington DC metro area at the time of her diagnosis. I was lucky with my graduate program to be able to visit her in New York four days out of the week, while returning to my husband in DC for the three days that I had class. I've been back in New York since May of 2013, and it has been an emotional, turbulent, terrible and wonderful 13 months. 

Today is my mom's 59th birthday. A year ago today, I didn't have a job yet, and I organized a "big" birthday party for her (having a large Greek family, every gathering involves at least 20 people, so in spite of my attempts to keep it low-key for my mom, it was inevitably still "big"). Two months before she had had colostomy surgery, which she was still adjusting to as she turned 58, and she was on Folfox every two weeks, she was barely eating most days, she needed her walker to get around and she spent most of her days in bed.

The transformation she's undergone in the past year is remarkable. She got sick of cleaning up clumps of her dried out, frizzy hair from her pillows and all over the floor, so late last year she went and buzzed it off completely, and she looks fantastic. After decades of battling weight issues and peaking at 270 pounds 3 years ago, she is now 160 pounds, and while the circumstances under which she has lost the weight aren't the happiest, a few months ago she yelped with delight when she put on the Levis skinny jeans that I got for her, the first pair she's ever owned in her life, and at size 12 they were even a little big. (They're even looser now.) After being on the cusp of a very bitter divorce with my father in December 2012, their relationship now is stronger than I can ever remember it being during the previous 28 years of my own life. My mother calls my father her savior, the lifeline without which she would have perished. My father keeps vigil over her every day, and when he holds her or looks at her, I see a love and tenderness in his eyes that I had literally never before seen in his eyes for my mother. My mother's true friends have been an essential source of support for her, and she says that they are dearer to her than sisters and brothers.

In late fall 2013, my mom was having a lot of dizziness and fainting problems, literally to the point that we couldn't leave her by herself (this didn't prevent her from falling down the stairs more than once). When she spoke to her oncologist about it, she did a scan and discovered a small brain tumor, and she underwent gamma knife surgery the same day. We were all terrified, me perhaps more than normal because I found out about it that night "by accident" from someone who wasn't supposed to tell me, because my mom wanted to protect me and didn't want me to worry. When she underwent another brain scan a few months ago, the scan was clean. But I still think about it and worry.

In early spring of this year, a CEA exam revealed that my mother's level had risen to 270, after having dropped to 31 last fall. Subsequent scans indicated that the tumors had resumed growth in her colon, liver and lungs. She was immediately switched from Folfox to Folfiri, with Avastin added in for good measure. The nausea she felt was so incredible that she's on a massive cocktail of anti-nauseau medications right now, some delivered with the chemo infusions, some in pill form. The oxycontin-oxycodone levels that she's on now have started to decrease in their effectiveness, as she often still has days when she's in a lot of pain in addition to the ever-present fatigue. When the doctor rechecked her CEA in early June, it had dropped to 125. My father and I were ecstatic. Her own enthusiasm was somewhat muted. I wondered if she was secretly disappointed because she is that tired of the pain, the exhaustion, the fighting, that she would rather it all be over.

My mom has promised my dad, my brother and me that she is going to fight this to the end, for as long as she can, for us.

I realize that this post is kind of jumbled up. Even as I tried to keep it short, it still doesn't follow a clear order in recounting what my mom has experienced in the past year. I've realized that perhaps more than other life challenges, there's nothing linear about cancer. It's not clear upswings and declines. There were weeks when I was wondering which day might be the last one, and then she rallied. There were months that were so happy, that she was doing so well, that she was so much happier, that I felt so fortunate to be near her to share in all of her happy moments, which I was sure would go on for years. And then her CEA level went up. Now I just tell myself to be ready for anything (even as that is impossible), whether fantastic or devastating. 

Tonight we're going to have another birthday party for my mom. Last year, I told her that we would all be there to celebrate her birthday again the following year, and she just looked at me with weariness and doubt. At this point, I would be lying to you all if I could say with the same confidence that we will be celebrating her birthday again together next year too. I think I have good reason to be hopeful, but of course things might change at any moment. But I am grateful for the past year that she has had, and that I've had with her, and I think that she is too. In spite of the grief that the cancer has brought, she tells me that she has had some of her very happiest moments in this past year, and for the first time in her life she has a sense of peace and calm that ahe was never able to find before. I wanted to share that with all of you, because I've found that outside the community of cancer patients and survivors, other people just don't get it, (which upsets me sometimes, unjustified as I know that my anger is). Thank you all for listening, and for being here. You all have my very best wishes.

Lovekitties's picture
Lovekitties
Posts: 2998
Joined: Jan 2010

So very glad that your family can share another birthday with your Mom.  While we feel our mortality much more after a cancer diagnosis, no one can know what tomorrow will bring.  That is why it is so important for everyone, not just cancer patients, to live each day to the fullest and to our best ability.

Has your Mom spoken to her onc. about the pain?  Have they tried the fentanyl patch?  There is also liquid morphine which can be given for breakthru pain.  There are meds out there which should help control the pain, but she may have to be insistant with the doc.

There are also various meds for the neasua.  One that worked well for my sister was a gel which is used for pregnant women.  It has to be specifically made up at the pharmacy based on the script and comes in a suringe with no needle.  You put the gel on the inside of one wrist and then rub it together with the other wrist.  The gel must be refrigerated.  I don't recall the name but the doc should know if you describe it.

I am not from a Greek family, but certainly have lots of relatives.  Just recently had a "small party" to celebrate my parents 70th wedding anniversary.  We had 85 family and friends attend!  I hope that your celebration for you Mom raises her spirits and you can all look forward to the next one.

Please stop in more often and let us know how Mom and the rest of you are doing.

Marie who loves kitties

      

 

 

Trubrit's picture
Trubrit
Posts: 1709
Joined: Jan 2013

I am very happy that your mother along with the rest of your family have had some happy times. I am especially glad to hear that your mother is at peace with her situation. The pain assosiated with the knowledge of leaving those we love behind, is so very hard. It is a very unique pain. 

Of course it would be wonderful for your mum to rally again and again, but the body sure does get tired. I myself fear the point when I wish to go on only for my family and not for myself. 

May you continue to live life to its fullest with your mum. We all know who every minute counts. 

Many, many blessings and that you for posting. 

I wish your mum a very happy Birthday. And I pray that she will enjoy her 60th birthday next year. It sure puts aging in to perspective. My friend is all 'woe is me' about his 60th birthday, and I tell him, how blessed he is. 

Akroger's picture
Akroger
Posts: 80
Joined: Mar 2013

Thank you for your responses and your warm wishes. My mom had a wonderful time at her party, and even rallied after taking her meds when she started to feel weak, staying up to spend time with guests past 1am! (Which is pretty late for her these days.) On Saturday my dad and I took her out to visit a local greenmarket, which she really liked, and my brother visited for the weekend too, which always makes her happy because he only visits once a month. She has chemo again this Wednesday, which she faces with dread every time, but I think she might be rallying again, like she did last year (knock on wood!).

My mom was actually on the Fentanyl patch last year, early in her diagnosis and pre-colostomy. It helped her a lot, but she prefers to defer asking for that again until she really needs it. The nausea seems to have died down too, with the medications she's currently on. Actually though, now it's not nausea that stops her from eating, but difficulty swallowing. She gets mad whenever I suggest eating something (she's going through a hard boiled egg phase now, eats about two a day with some toast, so I'm trying to back off on the food pressure.) I told her to definitely mention that to her doctor when she sees her this week. There seems to be a lot of information out there on he symptom of dysphagia for cancer patients, but nothing that jumps out at me as being exactly what she's experiencing. I hope it's just something minor. I'll update when I find out.

merrysmom's picture
merrysmom
Posts: 46
Joined: Jun 2011

You really touched my heart with all of your love and caring. I hope you have a wonderful birthday party for your mom tonight. I will be 59 this year also. You sound like you have an incredible family. I will keep you all in my prayers. I agree with you. People, friends and family on the outside do not get it. I am always being told to stay away from this site as it is depressing. I told my family that the people on this site understands the roller coaster ride and gamit of feelings that you experience every day. I don't know anyone personally on this site and I don't post often but I check on everyone everyday and everyone feels like my brother or sister. I truly love all of the people on this site.

Bless you all, barb

Trubrit's picture
Trubrit
Posts: 1709
Joined: Jan 2013

It would be wonderful if you could start a new thread and update us on how you are doing. Its great to see a new face, even if you are an old face who likes to lurk. 

I hope you are NED and that all is going well. 

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