[blessthischick]

Totally, completely, and utterly devastated

by blessthischick on Sat Jul 12, 2014 11:03 am

It has been some months now and I still can't get my head around this diagnosis.

At first, when things were new, I threw myself into enjoying life as much as I could, taking every opportunity that came along, but after a while that has become exhausting. Then reality sets in. This is not gonna go away. My body is in constant fight-or-flight mode and I feel so so sad. I can't stop crying and I am pushing people away now. I don't know who to tell what to, and find it difficult to constantly put a brave face on.

I feel I should be proactive in raising awareness and funds to fight this disease, but the truth is I can hardly get out of bed. I feel such a failure in how I am handling this and very very ashamed of myself, as I know there are others who would love to be in my position. I feel SO alone & very isolated

[jhorner]

Re: Totally, completely, and utterly devastated

by jhorner on Sat Jul 12, 2014 1:48 pm

Hello,

I can't say that I completely understand the strong emotion you are currently feeling because I was diagnosed with MGUS in 2006 at the age of 40 and so I had plenty of time to get used to the idea of disease progression, but I certainly do empathize. I have a good friend that struggled and I hope she replies to your post here.

I was never suddenly shocked or terribly anxious, though I do spend much more time reviewing data and researching now that I am smoldering. I have a lot more questions as you can see from my activity on this forum:)

My advice to you is to get some professional help to assist you with coming to terms with your diagnosis, but only after you are well informed about your disease state and what you can expect in the immediate future. There are lots of people that smolder for a very long time, hence the multiple myeloma statistics are generally reflective of people in advanced age. Don't worry yourself sicker because that can happen. Do what you have to do to take care of your mental health while you "watch and wait". We are least allowed that privilege, unlike many other sufferers

Best,
J

[blessthischick]

Re: Totally, completely, and utterly devastated

by blessthischick on Sat Jul 12, 2014 4:52 pm

Thank you for your reply J

My initial diagnosis was thought to be AL amyloidosis and so when I was told I had SMM my initial reaction was relief and a feeling of celebration for a few months.

And then I studied smoldering myeloma and got enough info to ask my consultant about my FLC ratio 0.028 which CAN apparently give a higher risk of progression. The next question I asked was about genetics and I was floored to find I have high risk genetics, which was recently confirmed at another opinion. I am to have my bloods checked monthly including FLC and will begin treatment at the smoldering stage. On top of this, I am watched closely for AL amyloidosis as they did not have enough of a sample of amyloid tissue found in my skin to exclude this.

I have had chronic illness all my life (asthma & eczema) which has been very severe at times. At the moment, I have nodular prurigo which is the severest form of eczema which has not responded to recent light therapy. The next and only treatment would be an immuno­sup­pressant. Unfortunately, this could kick off my high risk disease.

I feel backed into a corner by this SMM diagnosis. I know enough about handling illness to know that it is not good to contaminate friendships with the feelings that I am experiencing. Therefore most people think I am fine, apart from a close few who I cannot even speak with at the moment because I am so upset. I hate being a burden and hate having to be grateful to anyone who is involved in my care. I dont want this and I would rather not be bothering anyone with it -- including you guys!

"Chaos often breeds life, when order breeds habit." This quote is true to an extent, but as I have said before, I have had enough of the chaos. I am awaiting an appointment with health psychology so hopefully this will help me get my head round this.

[Smittie]

Re: Totally, completely, and utterly devastated

by Smittie on Sat Jul 12, 2014 5:13 pm

Hi, Blessthischick,
.
For me it all started this February with a diagnosis of MGUS. Just wrapped my head around that and two weeks later a bone marrow biopsy moved me to smoldering. That rocked my world! Wwas coming to terms with that until my first follow up appointment where my numbers jumped.

So here are some things I learned along the way ...

From my sister in law, a two time cancer survivor -- While walking this path, just stay a step or two ahead, don't go someplace you may never end up in. Stay informed, but not consumed.

From doctors I have spoken too -- Turn those negative thoughts to positive ones. For me right now is yes I may need to start treatment, but how lucky I have a treatment plan. I have even started keeping a gratitude journal to stay focused on positive aspects of my day.

From my sister, a five year breast cancer survivor -- It's okay to have a total meltdown, feel scared, angry, pity party. Just don't stay there for too long.

For me the biggest motivation on how I choose to move forward are my twenty-something year old sons. Even at their age, they take their cues from me. I have told all our family so that my husband and boys have support. I have told only good friend because they still treat me like me.

I agree with the above comment. If your feelings are so overwhelming, go talk to someone. Our town has a cancer center and I spoke with a social worker there and that helped too. Don't be so hard on yourself. Private message me if you want.

[Multibilly]

Re: Totally, completely, and utterly devastated

by Multibilly on Sat Jul 12, 2014 8:55 pm

Hey Blessthischick (I do love that handle),

The previous suggestions were great ones.

But are your docs painting such a grim picture for you? I see a couple of different docs. My regular onc that I see every couple of months is brilliant, and paints an "OK" picture for me. I don't leave his office depressed, but I can't say that I am jumping with joy when I leave there. But I also have a top specialist that I see about once a year. Whenever I see him, he paints the picture of where the state of multiple myeloma medicine is today and where things can be by the time us smolderers really need them in the near future. By the time he finishes with me, I have to admit that I just "float" out of his office with optimism....and that feeling stays with me for quite a while.

If you don't have a doc that supports you in that way, you might also think about trying to find one.

Take care.

[blessthischick]

Re: Totally, completely, and utterly devastated

by blessthischick on Sun Jul 13, 2014 3:28 pm

Dear Smittie & Multibilly,

Thank you for your replies. I think one of the problems is I do know where I will end up. I am an oncology / palliative care nurse and I have seen people die from this in their 30's, albeit it was 6-8 yeas ago that I worked in haematology and things have moved on from then.

I am aware of the positive sides to this disease ... many people get struck down dead without the "luxury" that we have of preparing ourselves and our families to some degree and using the time that we have to the max. There is a pressure to that though: when I am sitting quite happily watching a movie, I suddenly start thinking I should be doing something more meaningful like making memories while I can.

I seem to be surrounded by invisible clocks, but I can almost hear them. One is counting down to SMM progressing, one is counting down to AL amyloidosis kicking off, and the other one is ticking for new myeloma treatments coming off the production line and being available for use when I need them.

My ex partner and best friend died in April. He was 53 and had advanced stomach cancer diagnosed in February of last year. I miss him so much and the silence in my home is deafening.

Multibilly, I am totally on the fence about my myeloma consultant. I think he has a pair of rose tinted specs on, which is very hard when you are a realist like me. Hence the reason for the other opinion. My consultant said himself that he is used to dealing with the mechanics of the disease but does not have the skills to deal with the emotional issues I have. Yes, REALLY, that is what he said. It's a very small unit, though, and there are not any patients as young as me plus with the amyloidosis issues as well. I have a very complex case. I think I might need to part ways with him soon though.

Thanks again. It would be good to know if anyone else identifies with any of the stuff I've been saying.

x

[Maro]

Re: Totally, completely, and utterly devastated

by Maro on Wed Jul 16, 2014 3:38 am

Hello

I was and still am feeling a little like you regarding my mom's diagnosis 3 months ago with SMM (50% bone marrow plasma cell percentage and t(14;16)).

I have a quick question: Technically there is a chance that SMM may never develop to become active multiple myeloma for all of us here. Is this really true?

If it is, then isn't our best solution to hope that we will be the lucky ones that will not progress?

Let's hang on to that. It is the best we can do, right?

Maro

[blessthischick]

Re: Totally, completely, and utterly devastated

by blessthischick on Wed Jul 16, 2014 12:54 pm

Dear Maro

As with all things related to myeloma, nothing is clear cut and there are so many different opinions out there from different specialists. I can tell you what the opinion of my specialist is, but this won't necessarily reflect your Mom's situation.

I have t (14;16) +1q Del 13.

The specialist felt del 13 was only relevant in that it is often seen with the other 2 abnormalities. He thinks I will need chemo and a stem cell transplant within the next 5 - 10 years, if not before, but is hopeful that the longer I smoulder, more treatments will be available by that time for these high risk genetics. He recommends treatment starting whilst I am still smoldering, therefore my bloods are checked monthly to monitor my free light chains.

My specialist worked with and still works relatively closely with Prof Gareth Morgan, who recently took up a prominent research position at Arkansas in the US, undertaking research into myeloma and is particularly looking at the high risk group of patients. The specialist I saw assured me that Prof Morgan would be of the same opinion regarding my situation.

"I have a quick question: Technically there is a chance that SMM may never develop to become active multiple myeloma for all of us here. Is this really true?

If it is, then isn't our best solution to hope that we will be the lucky ones that will not progress?"

Regarding the above question, I am not sure is it possible people can smoulder forever, even with high risk genetics? I have wondered about this ... maybe someone can chip in with some answers to this?

Best wishes to your Mom

[Maro]

Re: Totally, completely, and utterly devastated

by Maro on Wed Jul 16, 2014 2:23 pm

Blessthischick: t(14;16) has alot of controversy. Some studies say it is high risk, others claim not enough evidence for this.

You may not smolder forever. However, if you do smolder for 15 years, then chances are by the time you get there a cure would have been found.

We got to hang on to something, don't we?