One thing I hate about having ITP

is that your doctor mostly treats cancer patients, and the office is full of suffering people. People with body parts missing, people with no hair, people struggling to walk down the hall or pulling oxygen tanks. Old people helping spouses. It is incredibly sad. I suppose in one way, it puts my own disease in perspective. But I "got it" the first time I went. There are days when I leave the lab with tears in my eyes, watching those poor souls.

During the last weeks of my brother's life I mostly lived, often around the clock, at Memorial Sloan-Kettering Cancer Center. That time gave me a new perspective on suffering, that while there are some who are oppressed by pain, there are many others who carry their pain with great courage. The halls and beds were full of people not unlike my brother, bravely fighting their battle with cancer, and facing defeat with dignity. Those who succumbed to self pity suffered most. Those who clung to their dignity often seemed to find a strength they hadn't known they possessed. They all brought tears to my eyes, but for different reasons.

It helps me, when I see people suffering, to focus on their dignity rather than their pain. I like to think that it is helping them as well.

I am not going to lie, I was very freaked out when I started going to the hematologist/oncologist. However, I spent the later part of January and February at the treatment center receiving rituxan and a few rounds of IVIG. What I did not expect was to be completely inspired by many of the patients there. They showed me true courage and bravery while fighting against terrible odds. I expected it to be a very depressing place, but it was completely the opposite. Instead, there was constant conversation and laughter. it showed me the power of the human spirit. One of the patients there had battled 3 different forms of cancer and was not doing well. He told me life stories and encouraged me to live my life to the fullest as he had. This is being selfish, but his words really helped me in my battle with ITP. I work 40 hour weeks, but if I ever have the opportunity, I would love to go back and volunteer there and give back what the patients have given me, a much better outlook on life.

Unit I attend is mostly for haemophilia patients, with also some people with thallasaemia and sickle cell disease etc. I do feel for those guys as I'd rather have ITP than haemophilia any day.

Roberta,

My doctor is in the cancer center. I too felt the same way when I was getting my Rituxan treatments. So sad to see these very sick people who are a lot worse off than we are. Then you start putting "ITP" into perspective. It's not that bad. I always would get someone sitting next to me asking when I was diagnosed, what type of cancer do I have, who's my doctor? I was so glad to get out of there. The receptionist each week would say to me..you look good. She thought I had cancer. I did find one patient named Richard who also has ITP. I feel I have made a friend.

Once when I was getting a Rituxan infusion I found myself sitting next to a guy from my work. He was there with his wife who was getting some serious chemo. I wasn't really friends with the co-worker and it was very awkward. He was sympathetic, I wanted to explain I wasn't really getting chemo but there was no way to do it, and his wife was there being really sick.
Erica

When I tried/did chemotherapy as a treatment the people I sat in the room with didn't all assume I had cancer yet most did assumed I had some form of cancer. One lady who was receiving chemo not to cure but to prolong life death was coming but she wanted to be alive for something can't remember (wedding? or birth?) any way. Everyone was chatting and I over heard a nurse say to someone Nope don't know the name but we have a waiting list of people who are in need of treatment. At this time we were doing introductions and I instantly felt bad and said to this women that makes me feel bad. Someone with cancer who really needs chemo is on a waiting list and me who doesn't have cancer and just trying it as a treatment option. I'm taking up a spot when it can be used for someone who really needs it.

I was shocked to hear her say If your here you need to be here whether you have cancer or not so don't ever feel bad!

She's right. Your doctor would not have prescribed it unless he thought you needed it.

My doctor didn't prescribe he gave me a list of options I looked into all of them and that is the one I chose. Than he prescribed.

I have a friend who is in remission from breast cancer and is currently taking a once a day chemotherapy drug. We were talking because her oncologist is my old doctor. After a while she piped up and said ITP sounds awful I don't know how you do it.


I think what we all need to remember is everyone has some form of a burden to bare in their life. Like all of us with ITP everyone is different the burdens are different.


That said sitting around these people and watching can be hard on a person. You have to try and separate yourself from it. It is hard to do but it can be done. I did palliative care for years and would have co-workers who couldn't do it. They got too involved to quickly would be devastated when someone passed. For me I could keep myself emotionally unattached so for me it was just my job. As for learning a lesson I did that years ago.


I learned life is too short not to enjoy it. Plan for later but don't put off today just for it!

I learned a lot from my Mother. She had an aggressive type of lymphoma and did chemo for 6 months. Lost all of her hair and was on high doses of Prednisone, so she also had the moon face. She kept working and kept her life as normal as possible.

A few years later I was diagnosed with ITP. I ended up going to the same office that she did, but I never felt that what I endured even came close to what she did. I was always the youngest in the office though and my file ended up ten times as thick as most of the patients. But I tried to do the same thing....keep my life normal and handle it with grace. I didn't have time for pity parties, although I did feel a lot of frustration trying to keep going with 3 young kids.

I tried to keep my perspective in check. ITP is not as bad as many illnesses that people have. It's a pain in the butt, it's an invasion on your life, but it's not painful or debilitating. The only part that stinks about autoimmune disorders is that they can linger, whereas some cancers are cured and for them, life goes on just fine. Some autoimmune disorders can cause a lifetime of pain and suffering.

I'm in my docs chemo room right now getting rituxan. Everyone here is so relaxed and upbeat. I'm trying to feel like that too. ( But i look awful, very pale from low hematocrit). Last week they had to stop my drip, do an EKG, the dr was with me for a while. I felt bad to take up the dr and nurses time.


So wish me luck, so far so good, just woozy from the benedryl.

My hematologist [before changing to the HMO] was in a cancer center - I never "hated" having ITP because of that. Those patients who wanted to talk I would talk with, and I enjoyed those people so much! They weren't wanting sympathy or to be told oh you poor soul - they wanted to be treated like a normal human being. I enjoyed talking with them or just giving a smile, and I especially enjoyed getting a smile back!

But I'll tell you one thing - it really makes me see red to hear someone say I'd rather have cancer than ITP because cancer can be cured. And that has been said here - such an ignorant thing to say!

I also ran into someone in the infusion center when I was getting Rituxan. He is a client of mine from work, so we made it where when he was getting his infusion I would get mine. I've known him for years and knew he had health problems, which brings me too I haven't seen him in awhile, need to call him and see how things are going.

I didn't quite say that. I went through 8 years of ITP, but it was still easier than what my Mom went through. The only thing was, it lasted a lot longer. It does get old after a while. She also had low platelets (9k) from the chemo (and low white cells), so she had to handle that too. Jackie O died from the exact same cancer that my Mom had, and it was around the same time. That totally freaked me out.

My hematologist works out of OSU's The James Cancer Hospital. It is a wonderful hospital!
However, it is also the hospital where my father died, my father-in-law died, my stepfather had his larynx removed, and my stepfather and I signed the DNR papers for my mother (she passed a week later).
I love my hematologist, but not the memories in that facility. I go there as little as possible and get out asap.

As for ITP? I watched my sister-in-law go through her final years of battling Sickle Cell Anemia.
Being totally honest and not to minimize our disorder....but....my 19k-w/treatment ITP is a minor annoyance in comparison.

.

Well said, Jack. I'm sorry about your sister.

Dru - I certainly feel for you having to struggle with both ITP and AIHA. The see-saw effect that those two have would surely be a lot to handle at times. I have always feared a diagnosis of ITP/AIHA, ITP/TTP, ITP/APS, etc. That is when having a blood disorder(s) gets really scary, and those other disorders seem to come along with ITP too often. I hope Rituxan works for you!

Roberta, thank you for starting a very meaningful and thought-provoking discussion. I hope nothing I wrote came across as negating what you said... I can see how it might have. Seeing others suffer is never easy. For those of us who get to live at least a close approximation of a normal life, it is troubling to see people whose life is torn from them, at least the life they knew. That so many face this loss with courage and spirit is inspiring, but also invokes in me the uncertainty whether, when it is my turn, I will be able to meet the challenge with similar grace. It is all very humbling to me.

Thanks Sandi,

On the good side I got through the rituxan infusion with no problems, 5 hours. My hematocrit is not improving but has not gone down either, so I will just have to be happy with that.


Roberta, I echo what Rob said in thanking you for starting this topic. It is something that I think about a lot. I am usually amazed by the grace and good humor that people exhibit at my doctor's office. It is humbling to me too.


Today in the chemo room someone who brought her friend to chemo brought a whole lunch spread to share with anyone who wanted it. The doctors and nurses had some and some of the patients too. It was really nice and made people feel happy.

Sandi I wasn't accusing, I was making a statement since it has been said on here before that the person would rather have cancer instead of ITP since cancer can be cured.

RHofm50129 wrote: is that your doctor mostly treats cancer patients, and the office is full of suffering people. People with body parts missing, people with no hair, people struggling to walk down the hall or pulling oxygen tanks. Old people helping spouses. It is incredibly sad. I suppose in one way, it puts my own disease in perspective. But I "got it" the first time I went. There are days when I leave the lab with tears in my eyes, watching those poor souls.

Roberta,

The souls you are looking at are looking back at you. Do not cry, talk with them, care about them, and love them. I speak about what I have journeyed through. I do know what you have written about. It is a journey, some have traveled longer and some a different path, but we journey to the same destination.

I used to go to my oncologist just in the nick of time to avoid the others. Now I go early. I want to speak with them, some I now know by name. Some have gone on with their journey. We laugh we tell hair jokes we talk about our diet! We share hope and joy. No one is kidding anyone in there, we all "know". But, we have chosen to spend some of the most precious thing we have, time, with each other! What a precious thing to do! In this situation could there be a more caring, thoughtful, or sincere gift to give? I really doubt it.

Lastly, one of the most beautiful things I have ever seen in my life I have seen repeatedly at my doctors office. A couple probably in their late 80's one supporting the other as they go in for their appointment, he shortening his step, for her, and her walking with her head up, not to show fear but her pride in "them". I have cried every time I see them, for joy and in the hope that I may be worthy of that in my life.

We all have a lot to share, and we need to do it. Roberta, thank you for the post, it has made me think a bit. I have had kind of tough week and was having a little pity party. I am now done and going forward.

Jeffrey

I know, Melinda. I know that what I said was close, so I just wanted to clarify.

Just because you have sympathy looking at a person suffering does not mean that you don't talk to them or that you shy away from them. I simply admire their courage in the face of such suffering and hope they get better sooner rather than later. They are also a grim reminder of what we will all face sooner or later.

Yes, hopefully later!

And you know what? Maybe never later! You really feel that people with cancer or some horrible disease is "...a grim reminder of what we will all face sooner or later."? All of us?

I recently added another birthday notch to my belt - I love waking up in the morning! I can't go around thinking doom & gloom, to me that is not the way to live!

I think she just meant that everybody dies, not that everybody gets some horrible disease. But, I sure agree with you Melinda, life is good, no need for doom and gloom. And I really see that positive human spirit every time I go to the hem/onc office. They know how important that is.

I wish my mom felt the same way as you, Melinda! Since the stroke she's been down in the dumps. She didn't let the cancer get her and I was hoping this wouldn't either. She feels like she is a burden to the rest of us. Can't convince her otherwise!

Cindy,

Is her leg better from the infection? She did have that setback but hopefully as she can gradually start doing more for herself her spirits will lift.

The infection is finally gone and the leg is looking better every day, Dru. It's her spirit that is down. She knows that now that the leg is better, we're going to start walking again. She tells everyone that she has no interest in going out and only goes to the doctor because she has to.

It isn't doom and gloom to say we will all die some day. It is a fact. A fact which should enhance your approach to life rather than diminish it. Going around with la-la ideas about life and death is certainly unrealistic. And, yes, unless we are hit by trucks, there is a good chance that we will suffer as these people are suffering at some point in the future. Most of us will get cancer, have strokes, or have heart problems. That's what we die of in this country for the most part. If nothing else, if we live long enough, we will become less and less able to do things. That, too, is a fact. And if we are wise, we prepare for it by purchasing long term health care or saving money or doing something to ready ourselves. That is not to say that we do enjoy life. We simply nod at the future and prepare while we are enjoying life. Like I have written before, I am not one to stick my head in the sand pretending not to see the bad parts of life or pretending they will never strike me.

Melinda, of course, Most of us will die from cancer or heart problems or stroke problems. Do you think most of us all going to die in bed some day, peacefully, and in good health? Rose-colored glasses, my friend, rose-colored glasses. Eight million people in the US have cancer today. A half million of those will die this year. One in four people in the US die of heart disease. Stroke is the third greatest cause of death in the US. Then there are various other diseases that kill people. And remember that many heart, cancer, and stroke patients are disabled by those diseases. So, yes, when we look at the patients in the Hematologists' offices, we are very likely going to be in their shoes later.