What is ITP?

     The one constant in my life is that there is always something strange going on. Recently I was checking my stomach for steroid induced Cushing Disease stretch marks when I noticed that my nine year old c-section scar had popped open. I am not a person who worries much but I figured I better tell my husband, who in his usual fashion freaked out. The next day he marched me right into the ER. When we told the nurse I had ITP and we thought the split was due to the swelling caused by the steroids though to this day my Oncologist swears steroids does not cause swelling the nurse said "What is that?" I looked at my husband and he looked at me and we both faltered how are we supposed to explain? We did the best to tell her it was something to do with poor platelets (not that in my opinion she cared). When the doctor finally entered he told me the problem was something like a split lip and he ordered the hole set with some strips of Dora the Explorer sticky tape. That night I did some research on the subject so I would be able to answer the question next time.
According to the ITP Foundation website http://www.itpfoundation.org/itpdefined.htm
ITP - Immune thrombocytopenia, also known as immune or idiopathic thrombocytopenic purpura, is a rare bleeding disorder characterized by a low amount of platelets in the blood. Platelets are needed for clotting of the blood. In patients with ITP, a person's own immune system creates antibodies that mark healthy platelets as "foreign substances" and then mistakenly attack and destroy them. As an autoimmune disease that results in the destruction of platelets, patients with ITP have a tendency to bleed or bruise.

I have Primary ITP, also know as Idiopathic, it is when ITP develops for no known reason.

Sounds fun right? Next step how on earth do you tell someone what you have if you can't even pronounce it. Thanks to youtube and a little practice I can now do just that.
https://m.youtube.com/watch?v=5SQWNSfKMCc

To break it down
Idiopathic: Having to do with the immune system with no know cause.

thrombocytopenic: The platelets are being attacked by the immune system as a foreign bodies.

purpura: The bruises.


There you have it you did not know you were going to school by reading this blog today. I hope it helps it makes me feel better anyway. On a side note due to a early reaction the have changed my dose of Ratuxin so instead of four weeks I have to have eight. I am worried about financial stress this added time is going to add to my family. If you have a moment please visit my donation page even it is simply to share it. Thank you for your time.

https://www.giveforward.com/fundraiser/dff8/sally-a-wolf-oncologist-fund

Run down and in need of positive thoughts.

I had my third round of Rutaxin today. The treatment itself went well I took the whole thing with no side affects. Now that I am home I feel terrible. I think I am having issues due to the steroids again. I have a burning pain between my shoulder blades, severe fatigue, and I am styling a lovely new moustache and beard. This is really taking its toll on me. I feel so disconnected from everything. My children are trying to tell me all about their day and all I am hearing is the voice of Charley Brown's teacher. My platelets were only at 80k I believe this could be contributed to the steroids I really don't want to have major surgery. I don't understand why none of the drugs are working. Please pray for me I need some positive vibes commuting my way. I believe that is the only way to get through this. Till next time thanks for reading this right now it was hard to write. In case you don't believe me about the chemotherapy here is a picture of the bag.

https://www.giveforward.com/fundraiser/dff8/sally-a-wolf-oncologist-fund

PS did I mention the severe hot or cold flashes itchy skin and the pounding headache?

Boredom has a new name and chemo is its name

     Today was another long day of sitting around watching little drops of fluid fill my veins. Now don't get me wrong I love having the time to read, but after several hours the time seems to stand still. The treatment has to be started slowly to insure I do not have a reaction to the medication. The problem has been they set the IV to auto and forget to increase it. On top of it all my poor husband has to sit painfully in an uncomfortable chair watching me munch on gluten filled snacks he can't eat while I mindlessly turn pages and there is nothing I can do for him. Today he went a little crazy and started making invein vein jokes then quoting lines from "The Princess Bride" and "Frightners" I could not help but laugh which most of the time is a good thing unless someone is poking you with a needle trying to find a vein. I am home now I have to wait a whole week for another dose the problem with that is I have terrible withdrawal from the steroids the give me before the Rituxan. It makes me so week I can barely move. To top it all off I have a burning pain between my shoulder blades which is aggravated by sitting or lying down. My face has so much acne I could play Pizza The Hut from "Spaceballs" I know I was not a fashion statement before but now I get weird looks. Not counting the older man checking me out at the gas station this evening. I think my husband would have had some choice words for him if he did not hurt so bad he could not get out of the car.
     In closing I would like to once again thank those of you who have donated their hard earned money to our cause. I know how much of a sacrifice it must be. Please know it is greatly appreciated. It is going to be a long road until I am well enough to once again provide for my family and we are humbled by your generosity. Link to more information. Even if you do not have the monetary means,  please just share the link and keep me in your prayers hopefully the Rituxan works and I do not have to resort to more drastic measures with a higher failure rate.

https://www.giveforward.com/fundraiser/dff8/sally-a-wolf-oncologist-fund

Round two let's fight!

Back in the chair again. Today I will hopefully get the rest of the first round of Ratuxin I have to do one bag a week for the next four weeks. So far so good but I will be here all day. They even sent me home with my IV still I my am so I could have it first thing when I got here. Since nothing really exciting is happening right now I thought I would us this opportunity to thank someone who is very important to me my husband. Let me start of by saying that all individuals who threatened my husband on or around our wedding need to apologize to him. Not only has he never hurt me, he has gone above and beyond the call of duty to make sure I am taken care of. Many of you do not know his health has been going down hill both mentally and physically. We are in the middle of a disability case. Due to my illness he has put his needs on hold and totally focused on me. He has gotten up a the crack of dawn to take me to my treatments. He has suffered through severe pain, tiredness and worry putting all his needs aside just for me.He is my best friend and he can always make me laugh when I am sad.
 I will never be able too express my gratitude to him. Please pray for him he may have big shoulders but he has a lot ridding on them.
Finished up for the day have to get another bag next Friday.
https://www.giveforward.com/fundraiser/dff8/sally-a-wolf-oncologist-fund

It is all about the treatment baby.

I sit here in the treatment recliner a tube connected to a needle which drags on the inner skin of my arm. Despite my optimism going in to this regarding everything  going fine sometimes positive thinking is not enough for the body has a mind of its own and it will do whatever it wants. They started me slowly 25pi. At the half hour mark I went from fine to a furry of blue scrubs surrounding me. One breathing treatment, a bunch of anti-reaction drugs, and an hour I am back to where I started a slow drip. They just raised me to 50pi if I have no more reactions I will remain at this level for the rest of the day. I will have to come back early tomorrow morning to finish. I fell a bit like a fish being acclimatted to a new tank. Now all I can do is sit here and wait I will post this first part then update it when I have more information.

https://www.giveforward.com/fundraiser/dff8/sally-a-wolf-oncologist-fund

Drama Dreams.

When I went to sleep last night I was unsure what I was going to write for today's blog but as always when I fall asleep thinking about what to write the answer finds me sometime in the night. In this case it came to me in the form of a dream. I was in a play between acts I was talking to a woman and her child whom were watching the performance from the wing. The play was about being sick and having everyone treat you differently. As the play when on I was covered more and more with bruises until my whole body was purplish. The woman asked me how I got into character and I told her "This is who I am." Then I woke up. Are we really defined by our illnesses? I for one am not going to let it control me. Bring on the treatment I am ready.

https://www.giveforward.com/fundraiser/dff8/sally-a-wolf-oncologist-fund

The symptoms of the matter.

     When I started getting spots and bruises I made jokes about having ripe banana syndrome. This however quickly turned into a serious issue causing me to have a five day hospital stay. The issues are still not resolved, I feel awful I have pain, dizziness, mental disconnectedness, heaviness, swelling, the shakes, fatigue, and a ringing in my ears. My skin has turned into greasy shoe leather filled with acne and it feels hot and burning to me but is extremely cool to the touch. To make matters worse they are unsure of what caused this illness or even what to call it. Right now they are sticking with chronic ITP and costochondritis.
 So what am I supposed to do about all of these annoying troubles. First I had platelets, then IGIV, and then steroids. All of these things have not worked. In fact the steroids have made most of the above mentioned issues worse. So now my options are limited to spleen removal and chemotherapy. This is a big step into the unknown and the big question on everyone's mind is, Are either of these prospects going help me? I sincerely hope so because i simply can not continue as I am. As a self employed home schooling mother of four who also takes care of a disabled husband I just cannot afford to be incapacitated for any reason. I wish there was a way to make my family ok through this. I do not know what else to do as it is next week we will be completely out of money. This means no gas to even get to my treatments. I have set up a fundraiser but that actually requires the word to go out and I simply don't know that many people. To be honest I am not sure why I keep making these blog posts other than writing is the only thing that has ever kept me remotely sane so I will keep writing even if it is just for me. I have to go for my first chemotherapy treatment tomorrow morning please keep me in your thoughts.

https://www.giveforward.com/fundraiser/dff8/sally-a-wolf-oncologist-fund