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test results are in
We got Mama’s test results today. It is bad, but not as bad as I was afraid it would be. Lymph nodes are cancerous. They saw nothing else but felt like there was probably some other small spreads that weren’t detectable yet? Does that sound right? I guess. Anyway, they gave her a year without treatmenta. Maybe 18 months with. Radiaiton may not be an option because one of the nodes is near her heart. Not sure if she will take the treatments or not. I will talk to her more when the crying stops (mine…not hers). I think I could be ok with a year if I knew it would be a good year. I just don’t want things to progress quickly but I guess it will. She swears she feels fine and I think she is at peace. Wish i was.
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12 Replies
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Juliann, whatever your mama’s choice is I think your wise to respect her decision, although you may wish her to do treatment she sounds like a very wise woman with faith that sustains her decisions. Pat has given you some great info on the Cleveland Clinic, as always she has a ton of good advice…Ginger
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Cleveland Clinic one of the first to use this technology….read further..
http://cms.clevelandclinic.org/cancer/body.cfm?id=668
Pat
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Julieann,
I can totally appreciate your mothers desire not to get Chemo. Especially when she has witnessed other family members get it.
There may be another option for her with Radiation…Even with the effected Lymph node being so close to her heart. It is called IGRT (Image Guided Radiation Therapy). It is a more exact radiation. They can actually treat cancer on the eyelid without affecting the eye! That is how precise it is.
You may want to research where in your state it is available. Not every Cancer Center has the machine.
Just a little more info,
.·:*¨¨*:·.Karen.·:*¨¨*:·.
Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.Life isn’t about how to survive the storm, but how to dance in the rain.
Thanks Gene. I honestly don’t know what I would do without this site and all the kind people here. Ultimately, i know everything will be ok. It is just hard to swallow right now, as you all know. Mama goes back on Tuesday to further discuss her options. Not sure if I mentioned that one node is close to her heart, so radiation is probably not an option. We had a long talk and she didn’t say as much but I gather she is not real interested in the chemo. Not sure if I mentioned it before, but she has seen several siblings go through chemo. I’m hoping the doc can tell us some of the things to expect/watch for as time goes on. For now, we will just love her and be with her and pray for her. God could heal her if he wanted to, but i think he must really need another angel. Therefore, our prayers will be for no physical or emotional pain for her. That God will wrap His arms around her and protect her from hurt until it is time for Him to take her home.
Julieann and Susan,
Well I am so fortuneate to have talked Susan into sharing her story here as now she is helping Julieann. Faith can be a powerful thing and Julieann it seems your mom is blessed as it comforts her and sustains her. For you it will be difficult but get your strength from her as she seems to have it in abundance right now. The shock of what you’ve heard is probably still ringing in your ears, time will ease what has come upon you , you will accept it in your heart and cherish the time left with mama. Nothing I can say will help but know we are all here to help you through this. You mentioned to me you don’t know what to expect, maybe other members can chime in to give you some idea but remember everyone is different in each case. I wish you peace and love for your family, be strong, Ginger
Anything is helpful. I just don’t want to bombard you with questions, especially those that you’d rather noy discuss. Right now, Mama feels good and I am so thankful. I know it will be day by day and I can’t dwell on what might happen. I have to live for the moment. The unknown is just a difficult thing. However, really, we are all living on the edge every day. Anything can happen. i guess that’s where faith comes in. I can’t tell you how much I appreciate you just talking with me. It means a lot just to be able to discuss it.
Julieann — I hope others can help you with the issue of chemotherapy side effects and effects of the cancer-itself. When my doctor asks about symptoms attributable to
the cancer, itself, I don’t usually have much to say. I think I have less energy,
I think I get tired after walking less far. Sometimes I have a little cough. I had a gap in treatment from August until November and I think I got more tired and had
less physical stamina during that time, but no pain or anything. That doesn’t mean
that there won’t be more dramatic effects in the future though should treatment prove ineffective. I think others can tell you of pain and other late effects.For Chemotherapy. Well, I lost my hair (on my head) twice. My white count, red count and platelet count go way down. I have to limit my social activities and take diet precautions when my white count is low. I get constipated. My anti-nausea medicines work well, so I do not get nauseous or vomit. I need to take naps.
For radiation. I felt fine for the first 3/4 of treatment butI got really tired near the end and had troublesome diarrhea that kept me home (or at places within
60 seconds or less of a women’s room.)My father did not have treatment, except palliative, when diagnosed with lung cancer. He was in his 80s. No surgery, chemotherapy, or radiation. He lost a lot of weight, had a persistent cough, and the calcium levels in his blood were affected.
He died of heart failure just before he was to enter hospice care.One of the people in my support group had metastatic breast cancer and had always
refused chemotherapy. She was having trouble with patholical fractures due to
bone mets when last we talked.Others may know more people who haven’t included chemotherapy in their treatment
and their outcomes.This is only my experience and others, including your mother, may have very different journeys.
I am not sure whther or not this will be helpful, but I tried — Susan (mssmr)
Susan,
You words are so encouraging and I am so happy that you have been so well. I do so hope that mama will feel well also. She is thinking about the chemo but isn’t sure yet. They told her that chemo would buy her about 6 months but that she would take chemo for 6 months. That the chemo would help with the actual cancer side effects but of course chemo has its own side effects. I know most people opt for chemo and I understand that people may not understand that is she has thus far opted out of it, but…..when they say cancer side effects, what exactly are those and what is worse in your opinion…cancer effects or chemo effects. Anyone know of any story here where there was no chemo? Susan, thanks again for taking the time to write and for all the encouragement. I wish you all the best.
Dear Julieann — Based on my own year (minus 3 weeks — diagnosed 2-23-07) since diagnosis (at stage 3 muscle invasive with suspicion of local spreading)I think there is a good chance that you mother and you could share a good year. I have had chemotherapy (none of which has seemed to have shrunk my primary tumor nor stopped the spreading or growth of “mets.”) Please be aware, though, that my tumor has a rare sarcomatoid varient known to be unlikely respond to bladder cancer regimens
for chemotherapy.From March-July, I lived alone in a vibrant city (Boston) — my son lived across town, but works hard at his career and was available only when I said it was essential or for socializing evenings and weekends. I walked 25 minutes uphill for chemotherapy and later (daily) for radiotherapy. I found a wonderful support group at a Wellness Community and we still keep in touch. I found a beautiful park where I walked and which used as a muse for my photography and poetry efforts. I went to the dress rehesrsal of the famous 4th of July Boston Pops 4th of July Concert and other arts events. I only felt really bad about 5 days in that period and no bad days included “pain” just extreme fatigue.
From August until now, I have been teaching college. I’ve only missed two classes in all. (I got good student evaluations, too. Last semester’s students knew about the cancer; I haven’t told this semester’s students quite yet.)
I’ve also had the thrill of a son’s marriage to a lovely lady with three
children and have been given the gift of “grandchildren” one of my most heartfelt desires. I organized the rehearsal dinner and gave a speech and blessing at it myself.And: my husband and I went on a cruise, I gave a paper at a national convention,
I did a public poetry reading, I took the whole family to Boston to be together
the week before Christmas — I am taking one day at a time and feel blessed to feel so well — even today after a turbt yesterday. (I’m at home with a catheter
today.)I’m at another juncture in my treatment and need to make some decisions within the next week or so. My CT scan showed more lesions and some growth in a lesion (from 4.0 cm to 4.9 cm since mid-November) and a suspicious new place
though I’ve been receiving taxol and gemzar as chemotherapy. I am terrified,
but I feel well today.There is a big disconnect between my objective pathology/imaging and my subjective wellness and enjoyment of life. Oh how I want to survive! But taking it a day at a time, I’ve had over 300 days of wellness in the past almost-a-year and I
feel blessed by that and wish blessings upon you and your mother.I know this is just my journey and your mother’s journey is also her own. And I do wish you peace — Susan (mssmr)
Thanks you guys. I know I have no control and have to have faith, but right now, it is just sadness.
Julieann,
What a rough day you both have had…I remember that day very well…
One thought that helped me, and may help you…Most people don’t know when they are going to die…sometimes it is an accident, or heart attack, stroke, or some other event that takes a loved one in a split second…With the knowledge of what the time frame looks like for you mother…spend the time wisely…make it quality time…don’t waste a day, an hour, or a minute…Plan a trip, start a scrapbook together, go through old photos where there is no name on the back and write the name, cook together, get great movies to watch…anything to make this time memorable for you both…
(((Hugs)))
.·:*¨¨*:·.Karen.·:*¨¨*:·.
Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.Life isn’t about how to survive the storm, but how to dance in the rain.
Hi Julieann,
It sure is tough to get news like that – my heart goes out to you and your Mom. The choice to do or not do treatment is so difficult.
There is a lady Renee on the forum who is excellent with facing these type issues. I have good faith she will see your posts soon and be of great help.
Thank you for asking about myself – The nurse called to let me know there are no new hot spots. I still see the DR Monday and she said there are things to discuss – just no new hot spots. I am grateful.
I am here and praying for you, HollySign In to reply.
