How do you cope?

[adb001]

I apologize ahead of time because this may get a little morbid, but how do you cope with this diagnosis? I’m having a tough time with it today for some reason.

I don’t know what type I have; I asked my oncologist today, and he said that he hasn’t yet gotten my bone marrow biopsy results from the hematologist; therefore, he also doesn’t know the percentage of blasts I have or how likely it is turn to into bone marrow failure (the likelier of the two for me, he said). I’m not on any meds right now because he’s not sure that they are safe to take during pregnancy. So basically, I am waiting until after the baby is born to look into options. He said today that at that time, we’re going to look into “aggressive” treatment options.

Aggressive. I don’t want to die. A time that should be happy — the birth of my baby — is being turned into the point at which we look into aggressive treatment options. All I can think is that I might not be around to see my baby grow up. Will I make it to my 10-year high school reunion? Will I make it to 30 years of age? Will I be able to celebrate my 10-year wedding anniversary? I’m sorry about complaining because I know from reading some of the posts that, unlike many of you guys (or your family members), I’m not undergoing chemo or treatments, but I’m having a really difficult time today and thought that maybe some of you could relate and possibly help me figure out a way to get past this.

[Carruth]

My mother-in-law has this disease and the only way we cope is by the grace and mercy of God. I couldn’t make it without Him, and sometimes barely do anyway! I can’t begin to imagine how you must feel. I know that many people live a long time, and many get remissions or cures. You have youth on your side. Transfusions alone can keep you going a long time, then you can face the treatment appropriate for you after your baby is born. This is a wonderful place to ask questions, research, learn and get support from people who understand. This forum enabled me to even know the right questions to ask.

Again, I can’t imagine how overwhelmed you must be. I have Meniere’s disease, which has taken many years and some hearing from me. I was bedridden for over two years from vertigo. I just kept telling myself that it was temporary– that things would get better. All I was required to do was make it through today. I’m not remotely comparing that to your diagnosis, but I have been very sick before with no end in sight.

These people can offer you information, support and hope. God can give us peace. I will think of you and pray for you and your baby. You have so much to live for. Do you know the sex, yet? And the name? Please let us know. Many blessings to you. It will get better! Hang in there!

Sincerely,
Stacey Carruth

[Alice S]

Hi
You can vent all you need. Everybody here understands what you are going through right now. It feels as if the whole world is descending onto your shoulders and clouding your days. But, nothing is written in stone, at this moment, you have to take each day as it comes and try and focus on you and your baby.

Faith is very important and a stroing belief that things will work out is paramount in your everyday life. Believe that you will be around to see your baby grow up, you will be around for that 10 year reunion, you will make it past your 30th birthday. The mind and will is very strong.

My mother just spent a month in hospital, the doctors and us (her family) gave up as it seemed that she had reached the end and it was agreed that we would not keep her alive artifically and let her die with dignity. So we said our goodbyes and waited, three times the doctors told us it would only be a matter of hours but low and behold-without medication (all stopped except morphine)she recovered and miraculously over a three day period her hgb, rbc and wbc counts went up by themselves!! She has had three surgeries (she was told she could not have surgery with her rock bottom blood counts) since May 3. She is now home and recovering very slowly but steadily.

The doctors verdict – It’s a miracle. At the time of the original diagnosis she was told she would live only a year. Now three and a half years later, two brushes with death, no treatment except transfusions she has no intention of going anywhere and has told the doctors to stop with their predictions!

Surround yourself with loving thoughts of your life with your precious bundle and enjoy this special time. Each day will bring it’s own joys and heartache, don’t dwell on possible heartaches, they may not come. The initially time after diagnosis is hard, confusing and traumatic – for everyone around you too, but time, the great healer will be on your side and you will be alright.

Post here, ask questions, someone will always heed your call for help. There’s more wisdom here than anywhere else – I now, I’ve been telling the doctors a thing or two lately!

You can also send private emails to me if you wish, my email is listed in my profile.

Take care, a big hug to you and prayers.
Alice

[marlene]

I remember how “spun up” I was when John was going through his diagnositc work-up for his blood disorder. Once we got the official diagnosis, I was able to focus on just one thing versus all the “what ifs” . Of course he was not expecting a child . This does add another layer of complexity to your situation. I adopted a “mantra” that helped me get through some of this…”have tenderness for the past, courage for the present and hope for the future”. You do have to take this disease a day at time. I broke it down into more managealbe phases instead of looking at all we were faced with. Like…. What do we need to do and focus on for the diagnositic work-up; then the treatment/chemo phase; etc… It sounds a bit premature for your doc to suggest “aggressive” therapy if he’s yet to see the BMB results though. Our bodies are amazing and recover. So be kind yourself, rest when needed, keep up the recommended pre-natel care, and from time to time, allow yourself to “feel sorry” for yourself. It’s natural.

So my questions…..Have you gotten a definitive diagnosis yet? And what are your current counts? Your signature has EDD but I’m not familiar with that.

Also, when is your baby due?

Take care,
Marlene

[Jack_dup1]

What you are going through is horrible, the main thing you are suffering from is “lack of information”.
It is not a death sentence. Your age is an advantage and you have time on your side.
Make sure you have been seen at a “center of excellence”. Most local hematologist know very little about the treatments available. Learn as much as you can, after they actually know what you have.
My doctor scared me to death when I was told I had 10-60 months to survive with no treatment available. That was 63 months ago.
Try to relax and worry more about the expense of your child’s wedding than your being there, you will be.
Jack S.
Stay positive and we will be tinking of ou.

[LynnI]

It’s scary and overwhelming at first, no doubt.
I was dx recently in Apirl, I was warned by the Dr.s not to go online immediately but wait until I had been seen by my new Dr. (he is listed on the Centres of Excellence). Of course I didn’t wait, I wanted to know what this was and why I got it. What I found was a lot of very scary stats.
Since then I have learned that those stats may not apply to me, that they are finding new treatments that are working and there are many many people that live for many years with this disease.
My Dr. will not give any kind of time line, he is confident that with all the new research and drugs that I will be around for a very long time.
The birth of your child is a huge event as you know and that is what will define you, not this disease. Our son is only 15 and I had the same questions of ‘would I be there for……’, it is very upsetting to say the least. But one thing that put everything into prespective is, better me than him. And I do believe that I will be there for him for a very long time.
They have come a long ways in understanding and treating this disease in the last few years and it will only improve for us as time marches on.

[adb001]

Thank y’all for the encouraging words, quotes, and thoughts. I’m doing some better today, and I am going to try harder to be positive and have faith. It’s not the easiest thing to do, but it helps to know that I’m not alone and that when I have questions, I have somewhere I can come to to ask them. And it really helps to see that others are dealing with and surviving this diagnosis.

Now to answer some of *your* questions. EDD stands for expected due date; I wasn’t really sure what to put in my signature at this point since I don’t have a specific type or meds yet. It’s a boy, and we’re planning on calling him Nathan. I’m kinda nervous about the birth because of the possibility of bleeding to death (if I don’t get a transfusion in time) and because if my platelets aren’t above 100, I don’t have the options of pain meds.

My count as of this past Monday was platelets 44 and hemoglobin 8.5. Last Wednesday, the count was platelets 19 and hemoglobin 8.2. My hemoglobin came up on its own; my platelets came up because of the unit of platelets I received in a transfusion on Friday. I’m going in to my oncologist’s office weekly for a CBC and a cross and type (complete with the pretty pink bracelet — do guys get blue ones?) to see if I need another transfusion.

[marlene]

Oh…that’s what that means….when I googled it I got some very interesting replies….none were Expected Due Date.

I’m sure they’ll ready with platelets and blood when you’re ready to deliver. BTW….John had surgery when his platelets were at 30K. They started to transfuse just before and during the surgery.

Press your doc for an exact diagnosis. Like Jack said, this will help.

[Russ P.]

Alissa, you got some excellent advice in the prior posts. Contact the closest Center of Excellence as Jack indicated. Have faith – will add my prayers to those of others.
Russ

[txplumber]

I have similar uneast feeling. My doctor prescribed an anti-depressant. She said it was common in MDS patients. Is anyone else on anti-depressants?

[newlywedmds]

My first/best advice, exercise! My husband and I on our saddest days have been able to control the despair by walking. We feel very good after about 2 miles. Second to that, seeing some light hearted disney/pixar movies like Kung fu panda is good distraction. Also spending time with friends who don’t dwell too much on the illness and can just talk about books/movies and generally entertaining things. Spend time with family. Keep busy. Stay optimistic. Also, we recently went to see a naturopathic oncologist after my husband’s first platelet transfusion, and he recommended Steve take Rapunzel Sesame oil, 1 tbs twice a day. Steve’s platelets went up for the first time since getting diagnosed. Of course we can’t be sure it was from the sesame oil, but it’s a nontoxic solution that might work for you. Also we read “it’s not about the bike” by Lance Armstrong. That was motivational too.
Focusing on eating right and making healthy meals feels good too. My friend bought me “the cancer lifeline cookbook” and “one bite at a time” cookbook and the recipes are great. Our friend recommended Qigong and meditation, which helped her husband deal with his cancer and treatment.

[LynnI]

Roger, I haven’t been on anything for depression, that seems to come and go. The lack of being able to exercise because of my low hemoglobins is what gets to me the most. I have always been very active and strong. I am a 5’2″ female in her 40’s @ (was much lower now) 130 lbs, that up to last year could pick up a 55 lb bag of horse feed and RUN with it and run a couple of hundred feet at that!! No I wasn’t a smaller version of Arnold, but I was very fit.
Now when my hem’s are low, I have difficulity climbing 3 steps at a walk.
Sadly, we have to find ways to still enjoy a quality of life. Now I enter agility trials with my dog just after I have a tx, because the agility does require me to run, not to mention the fact that my fellow exhibitors and friends have fits when I have a hard time breathing or a near fainting espisode. I also very much enjoy driving my muscle car to cruise nights and car shows with my husband (he drives his streetrod while I drive my ride) when I can’t do much physically.
Hopefully everyone can find what makes them happy, even if it is a change from life before MDS.
Take care
Lynn

[Author]

Posts