Mom is Stage III and waiting for more news

ajehly

Hi everyone,

A few weeks ago, I did a search that brought me to some posts from this site, and I've been lurking since.  This board is wonderful, and I decided it was probably time to post because I'm driving myself a little nuts and there aren't many people in my life who really get it.

My mom was diagnosed with breast cancer in August. She is 69.  She was in Wisconsin (where I live) at the time -- she typically lives here in the summer and in Florida the rest of the year.  I'm not sure if she was Stage I or II at the time (I never got that info from her), but she had a lumpectomy with no nodes involved and was set to start radiation.  At the time, she planned to delay going back to Florida until her radiation was complete.  But things keep getting more complicated over time, which I guess shouldn't surprise me.

However, after the lumpectomy, they determined that she was triple negative, so chemo was recommended.  She decided she would rather do chemo in Florida than Wisconsin, which was a bit hard for me to take since the family is all up here, but obviously it was her decision.  And I couldn't blame her for wanting to do chemo where it's 80 degrees instead of 30 degrees.

After she went to Florida, she had a pulmonary embolism (thankfully she was in the hospital when they discovered it, so they started her on medication to dissolve the clot).  She also had a malignant pleural effusion, although I didn't know it was malignant at the time - we were under the impression that it was from the blood clot.

Anyway, she signed up for a clinical trial that required a PET scan.  During the PET scan, they found another lump in her chest wall which was too dangerous to remove.  While she was in the hospital for the PET scan.  So they started her on a very aggressive chemo protocol.  She did pretty well on that, and her tumor size was reduced by 50%.  She was admitted to the hospital for a low white blood cell count during the treatment - luckily it happened just at the time I was visiting her in Florida.

So, after she finished the first few rounds of her chemo protocol, they switched her to oral Xeloda (which she just finished).  Since she changed chemos, she's really been struggling, and has had multiple pleural effusions drained but still has trouble breathing and has low blood oxygen.  Finally, she went to the ER on Monday and they did a chemical pleurodesis and put in a drain.  She is also on oxygen at the hospital, and will be in the hospital until her blood oxygen is at a better level.

However, the other reason she went to the ER is that she couldn't lift her arm and she had pain.  She thought she might be having a heart attack, but it wasn't that.  She had an MRI yesterday so they can find out the cause, but it sounds like they suspect that the cancer has spread to her brain or that there is another tumor impinging on her nervous system.  I haven't heard anything about that yet today - I'm not sure how long it takes for them to tell what's going on from the MRI.

Anyway, it's been so much for her.  I feel heartbroken that she has gone through all of this, and I know all of these constant setbacks and complications have been really discouraging for her.  My stepdad is also struggling, especially since his first wife died of cancer extremely quickly (within 30 days of her diagnosis).  Plus he's a 75 year old man, and household work and dealing with doctors/the hospital is not his strong point.

Right now, I'm going a little crazy.  I can't do much to help, although I have a visit planned for March 10.  That's only a couple of weeks away, but it seems like forever!  

I am starting to think about taking a leave and staying down there for an extended time after my trip - like maybe through April since she's coming home again in May.  Luckily, I have a job where I could work remotely and get most of it done, so I think my boss would be okay with it.  I'm not sure if it's the right idea - sometimes it seems like it is, and sometimes it seems like I'm overreacting.  I know the last time I visited (in November), she would never ask me to come, but then when I told her I was coming, she said, "Oh, good."  So I can't really rely on her to tell me what she needs - you know, she's a mom, so she doesn't want to impose.  

I think it was helpful for me to be there in November, especially since I used to be married to a guy who was in and out of hospitals, so I'm pretty good at being an advocate and remembering the right stuff.  Also, just to be a shoulder for her and for my stepdad.  But I also know that she has always been a private woman when it comes to her health, so I worry about overstepping.  

I haven't brought it up to her yet, because I'm waiting to see how this all plays out, but any opinions are appreciated.

Sorry this is so long, but thanks to anyone who actually read this far!

Thanks,

AJ

ajehly

Well, I just got a call from her.  The news is not good.  She has mets to her back and shoulder -- she is in constant pain now.  The pulmonologist was talking about hospice -- not sure where her onc is, but I am calling her first thing tomorrow.  Decision made -- I'm getting down there as soon as I possibly can.  Thanks to anyone who reads this...

artsyemily

Hi AJ,

So sorry to hear that. My mom has Stage 2 as far as we can tell (still waiting for a lot of test results, would not be surprised if it was stage 3) I lurked in the Stage IV board and was really surprised to see that many people can live with Stage IV for years and manage their pain and even carry on with their regular lives. So unless your mother completely objects, I would call all her doctors and make sure she has a great team. My grandmother died of breast cancer in the 90's for 2 reasons. 1)She was in denial and did not tell anyone what was going on 2)Her doctors did not care to try to save her life even though she was only 64. I am sure when you are down there you will be able to get the best possible care for your mother and she will be happy to have you by her side. Best of luck!

greenacres

I wish you the best of luck and I'm so sorry for your mother.  Hang in there and stay strong.  Did you mother have any symptoms from her mets?

greenacres

PS, I am in WI too.