My sister's diagnosis at last

[Marguerite]

My sister W rang this afternoon. brother in law and J's kids were called in to a meeting with J's specialist last night, they were given the details of the diagnosis and prognosis. There are a lot of us in the family (siblings etc) to call, brother in law just didn't have the time or energy to get to me, so W promised him she would. I'm cool with that. I actually suggested that maybe we should set up a communication chain so he doesn't have to feel he's got the load on his shoulders to tell everyone personally.

Anyway, W told me the diagnosis for J is Hamman-Rich Syndrome. As I expected, this is still the original diagnosis of Idiopathic Pulmonary Fibrosis, but is a subset of it, a sort of fine-tuned diagnosis. Hamman-Rich Syndrome is also known as acute interstitial pneumonitis. PF is also a form of interstitial lung disease.

The info on this form of PF is that it is much faster to develop than usual PF and similarly progressive and fatal. However, I found a glimmer of hope - there was a mention that occasionally a patient can recover, especially if prednisone or cortisone can arrest or turn around the deterioration. And this seems to have at least partly happened with J. Those who recover from an episode of this generally don't get it back, and can recover lung function completely.

I really didn't think it was going to be possible for her to come back from this. I thought that once the lungs were fibrotic, that would be it. But apparently not necessarily. However, the odds are still against her surviving.

She is now fully aware of her condition and I hear very depressed about it (understandably). She remembers a near-death experience at some stage over the last couple of weeks. Due to the medication she was on, her memories are thankfully hazy, but a few things she does remember, including my last visit. But she also remembers having the choice to let go and die, or fight and come back. She remembers choosing to fight but has been saying, "Now I wish I had let go when I had the chance offered."

Despite this, she is a fighter and has a strong determination. But I think she just doesn't want to suffer any more.

What is happening now - she's off the ventilator, off all drips, central line is out. Still on lung drainage (recovering from the inevitable pneumothorax from last week's open lung biopsy). She's getting oxygen via oxygen prongs only, but has good sats. She's lost a great deal of muscle tone, is very weak and tires easily, but all medications and all nutrition is now oral.

Her current improvement could be due to the massive prednisone causing a short-term improvement in lung function due to a localised reduction in inflammation. Or it could be a genuine recovery beginning. We don't know. But now we have a confirmed, detailed diagnosis, plans can be made. If she continues to improve, there is a chance after all that she could recover completely. I don't dare hope. But while she is improving, even though it's slow, and while there is still even a faint hope of eventual recovery, there will be no suggestion of lung transplant. I would think that if she begins to deteriorate again, they will at that point put her on the transplant list. But not before.

So now we wait, and try to keep her spirits up. I can't get over to visit her until probably next Friday (Good Friday) so I hope she hangs on until then. We need her to be as positive as possible, to give her every chance. It is so hard for her to breathe, it would be so easy for her to give up. And after what she has already been through, I could hardly blame her.

But she has her three (adult) kids to live for, and a very young grandson. A twin sister, plus her husband and the rest of us all barracking for her.

She's definitely not out of the woods yet, but things look a lot better than they did a week ago.

Marg

 

[BusynMember]

Oh, Marg, big hugs.
At least they know what they are dealing with and at least you know there is hope.
Sending you prayers and loving thoughts, and I hope your sister can pull through!

 

[Lothlorien]

Well, I'll still hope a pray for a miracle. I'm glad to hear she's improving.

 

[Hound dog]

She has come such a long way in such a rather short period, it does look hopeful. Still praying hard for her recovery.

Hugs

 

[Suz]

Marg, it is good that there is a diagnosis and treatment plan in place. All of you must be exhausted. Sending good thoughts for continued improvement.

Suz

 

[klmno]

I'm glad to hear that you at least have some answers. I really hope this leads to her getting over this soon. I can't say much about this because it goes completely above my head but I do want to wish your sister well- now don't forget to take care of your own health, too!

 

[Nomad]

Glad the docs are on top of this and a plan is in place.
Sending good thoughts for her and your family.

 

[Jody]

I am sorry to read all that your familing is dealing with. Sending good thoughts your way!!

 

[TerryJ2]

Oh. Sigh.
What a lot to go through.
I'm glad there is a diagnosis.
Everyone has been working so hard.
Many hugs.

 

[mstang67chic]

Hugs Marg.

Good points: You now know exactly what you're dealing with. There ARE options. She's made improvement and is able to communicate coherently.

Of course, the bad points....you know exactly what you're dealing with.

But....she's made what I think to be is a tremendous improvement and so far, albeit slowly, continues to do so. Thoughts and prayers still going out to her, you and the rest of the family. Tell her she's got beads rattling, shimmying chicking livers, sporking sporks, donkeys braying, chickens clucking and people all over the globe going into contortions keeping things crossed for her.

 

[DDD]

I'm sending my most caring thoughts of support to your family. And, I'm rooting for her! DDD

 

[Star*]

Hi Marg,

I'm thankful your sister is feeling better (if you can call it that). Could you put into understandable terms what happened to her? (lol - ya know sis sometimes the scientist in you just gets so Einstein)

Is she still a candidate for a lung transplant and would that clear up the matter for good?

Now.....sister issues out of the way -

How are YOU holding up? I see that strength and determination run in the family so I'm not surprised that your breast cancer took a quick back seat to your sisters immediate health issue, but I still worry about you. Just wanting to know how you are.

Hugs & Love
Star

 

[Marguerite]

Thanks, Star.

Lung transplant for J - I suspect she's not on the list at the moment, because if there's even a slight chance she could recover lung function, it's better to have your own lungs rather than a transplant. But once tat improvement stops or begins to reverse, I suspect she'll be on te list pronto. But I don't know for sure, because I'm not the one talking to her immediate family. There are too many of us siblings and beyond, so we're talking through W, our sister who lives nearby. I've been sending the occasional email to brother in law but I have to keep it simple, he's not the sharpest tool in the shed. But he loves her and is doing the utmost for her, so that makes him OK in my book.

A lung transplant, if they decide to do one, would fix the problem permanently.

In my case - I'm doing OK. The post-op infections resolved with the second course of antibiotics. However, i began to develop a reaction to the antibiotic which is NOT good, it's the only one I have left. But it's the same one J was getting in hospital through a drip, so I know they can always give it to me that way if future infections ever get life-threatening. Besides, if I take the pills with antiemetics and late in the day, I might be able to keep them down.

I saw the oncologist on Tuesday. Lost my Medicare card at that clinic, they have a stupid system at reception of taking your card and saying, "Get it from me later," and it turns out they handed it to someone else by mistake. Luckily it was the one person in the clinic who knows me, she's meeting with me today to give it back to me. But she will still be without HER card! She was seeing the oncologist for her annual check-up, so they'll probably have to mail hers out to her. I'm not letting them keep it next time - even if I have to stand there and see the doctor in the foyer!

The doctor explained the treatment options. According to him, I could still choose to have a full mastectomy, it would remove the need for radiology. But my surgeon was very against taking off more, she said there would be no difference in survivability. I could also refuse radiology and also refuse the anti-hormone pills. The oncologist gave me the percentages, the pills and radiology will still considerably reduce the chances of recurrence. What we forget - one woman in 10 will get breast cancer in her lifetime. That means that for those of us who have already had breast cancer, we still have a 10% chance of it coming back, totally independently. Plus there's the (very slight so as to be almost zero, in my case) chance that the original tumour left a fragment or cell behind. That's why the other treatment.

So for now, I've opted for the radiotherapy (even though it brings a risk of the same sort of pulmonary fibrosis as J has, although I was told that if it happens, it would be a very small area and shouldn't be progressive) which will start sometime in the next few months. He said they would send me a letter, to arrive in about a week, telling me when. Plus they want me to take a particular kind of hormone pill. Tamoxifen is one kind of hormone pill, it works to block cell receptors to hormones. But the other kind blocks the body's secretion of those hormones. It's the other kind they want me on.

As for when the pills start - I've accepted a place on a research project. It doesn't change anything about my treatment, it will merely be a gathering of statistics. All that I HAVE to do, is start the anti-hormone pills when they say. The trial is randomised but not blinded. so the doctors (and I) will know what I'm taking and when, but a computer will assign me to one of two groups - take the pills at the same time as radiotherapy is happening, or start the pills after radiotherapy. Again, my letter will tell me.

In terms of my case, it won't make any difference to my long-term chances (which are greater than 99% that I won't die from breast cancer). While I'm unlikely to die from breast cancer, there is still a greater chance of GETTING breast cancer back. But the added vigilance is what prevents it being a problem when it does come back.

So after I've taken the pills for as long as I can or three months, whichever is the shorter, I can ask to change the pills or even stop them (although that's not advised). I can stop the radiation if I choose (again, not advised). Or I can walk away from it all at any time.

mother in law was talking to me on Thursday while we were out. She was complaining about how weak she still is and how much pain she is in. She's entitled to complain, she's old and has a lot of health problems. Then she began to compare her condition with mine and say things like, "But I shouldn't complain, your situation is far worse tan mine," which is her way of saying, "I feel guilty for complaining."

I told her that she had every right to complain, she had had a bad fall, really jarred everything badly, plus had two separate sessions in hospital with cardiac arrhythmias. I also mentioned J's slow recovery and the shock effect to her body of the biopsies - it's a body insult, she's had the equivalent of a mugging with stabbing, she's got chest incisions and chest drains still healing. mother in law commented that I also needed to consider shock. I said my wounds did not invade the chest wall, they were superficial and so although I had to consider the body insult, the healing was nowhere near as stressful for me.
mother in law was still talking about the emotional trauma of breast surgery, but for me, it's not an issue. Maybe it would have been if they'd had to take more, but I visualised tat cancer as a foreign body that needed to be removed in order to avoid infection spreading. I had a "whatever it takes" mood about it. It helps that husband is a darling about it, even though he's a boob man.

And maybe that's one more difference between me and mother in law - I don't have a problem looking my mortality in the face. She's terrified of it. But then, she's closer to hers than I am to mine, so perhaps I can afford to be complacent.

As far as things are physically - there is still a large hard lump under the scar on my breast, and a smaller hard lump in the armpit. I think it's due to the internal sutures and scar tissue still taking their time. But the breast has just about gone back to its new normal shape. There is a very slight dishing around one side of the scar, but in a bra (especially my usual uplift bras) you can't tell. The scar is close enough to the nipple line (but above it) that none of my low-cut tops show the scar. Not that it would stop me wearing them.
It still hurts to press on the scars, I find sometimes the way I've been sleeping hurts. So I still sleep with various cushions nearby to stuff in various places to take the pressure off. The best ones are those squooshy cushions with microbeads in them. I have two heart-shaped bright red ones, they go well with my sexy underwired red and black nightie (which, since it has a built-in uplift bra in it, it actually very comfortable for my poor sore boob to sleep in).

How do I feel about the change in appearance? Well, I am past menopause and having to accept the other changes in my body due to ageing. I've always been proud of my boobs but they've been getting very tired and saggy, so adding a scar to the look is just one more thing, rather than a big thing in itself. And when I know that the scar represents me taking control of my life and saving it, then I like the scar. It represents salvation, common sense, life, taking control. It will fade and be less obvious. I have other scars that are much bigger, and so this isn't the first.

My first scar was my appendix scar. it's only a little smaller than my breast scar. Then when I was 20, I had a chunk of kidney removed. THAT was not a small scar, nor was it pretty. I could never hide it completely in a swimsuit, not even in a one-piece. I used to tell people it was a shark bite. But it is round to the side, so I don't generally see it much in a mirror.
I was explaining this to the surgeon who asked me the same sort of question - how am I coping with it? And the surgeon went looking for my kidney scar to compare it, and said, "You can hardly see it."
Well, it was 35 years ago or more. And my body has faded it so much that the scar is almost invisible. I never thought it would be.

So this? It really is nothing.

Marg