Last I left you...

Well the last I wrote in my blog was that we were going to try to make it to a Jan. 19,2017 bone marrow biopsy. I did not make it that far.

As my week progressed things got worse. I started running high fevers of about 101 deg F. and just feeling crappy. Getting night sweats and my whole body just ached because of the spasms from the cold shakes.

I contacted Dr. Brinker's office on Sunday night and he wanted me to come up to his "Same Day Clinic" (that is it's name) for evaluation by one of his nursing staff. We did first thing Monday. An hour and 30 minute drive for a CBC, a chest xray and to be told that I did not have a temp at the time. The temps were coming and going and I could feel them starting. I just wanted some validation. So much that I even requested to have my temperature taken again before I left. We went home.

The rest of Monday into Tuesday. Fever and chills. Broke into night sweats and I hurt even worse. I called off work and spent the day trying to get comfortable. Dr. Brinker's nurser were calling me and following up on me. I think it was four times that day. I would explain my symptoms and non individually were a trigger. So, we moved on. They suggested my coming back to the Same Day Clinic for another evaluation. I decided to wait.

Tuesday night... worst yet. I hurt so much that now I knew something was seriously wrong. I was not going to make it another night outside the hospital. Nurses called and consulted. Suggested Same Day Clinic again. by 11:00 I have already decided that I need to be a direct admit. I tell them I need a room and they consult Dr. Brinker and he agrees. Direct admit to 5N at Spectrum Butterworth Hospital.

I call Cindy or she calls me. Don't really remember. She asked if I need her to come home. I say. "Come Home". She does and she spends the afternoon packing for the hospital. We both know it is not going to be a short term stay.

We get a small room. One of the ones that they would rather just leave open for the last minute. But not to spend a month in this small of room. Vitals are taken. Blood draws and antibiotics start. An IV for maintaining fluids.

Bone marrow biopsy takes place on Thursday morning and we wait for results. By Friday we have some of the answers that we need. Dr. Brinker comes and tells us that it is Leukemia. That "You would not have be able to wait this out." "It was coming fast and hard. Over 60% of the sample showed Leukemia cells"

He tells us there is more results but he does not need to wait for them to start the process in motion. That means things like heart echo, chest xrays, put in a IJ line to be able to give the chemo. It makes for a busy following 24 hours.

Dr. Brinker did tell us that I would be here at least 4 weeks and made the promise that it would not be in that room(the small one). That I made sure to pass on to the friends I have on staff. As luck would have it someone in a larger room was discharged in the morning. Which meant we could move over to it Friday afternoon after it was cleaned.

A lot started happening all at once. I guess somewhere around 4:00 Jodi comes and tells us the room is ready and we can get our stuff and transfer it over. We pack up, didn't unpack very much, and moved the suitcase, clothes and electronics to the new room and get that situated.

So while all the test are going on most of the time Cindy will stay in the room. Dependent on if we thought it would be long and if they would not let her in the room. It would make no difference where she stayed. But, on two separate occasions I waited for an hour after the procedure before transport came to take me back to the room

Transport shows up to take me to get my IJ put in. Since this is the most intrusive test Cindy wants to go. So she does. Now I had been having trouble with my phone not wanting to keep a charge. I put it on Airplane mode and turned Wi-Fi on and it was charging. I could do nothing with it so we left it in the room. Cindy brought her laptop, that I had JUST bought her for Christmas, and it was sitting on a table charging along with her charger for her phone. Now mind you we have never had a problem with theft here. Well...

We decide not to go into hiding things in drawers etc. and hope it will be OK. We go get the IJ done. Process took about on hour and we did not have to wait for Transport. As we get back to the room Cindy starts noticing things missing. I have played a few pranks and so has Jodi so Cindy Just starts asking question. You guys didn't move anything?? Did you?? Answer: NO. Crap. So we start looking. Someone came into the room while we were gone and took my cell phone and charger. Cindy's cell phone charger and her laptop and charging cord. The same individual felt confident enough to go through every compartment of my backpack and clothing in the closet plus possibly our suitcase. We are thankful that they did not take more. They left my laptop. Which was my lifeline for AML and is again. They did not find my wallet. So thankful for that. But, It is just another mess that I am having to deal with on top of the Cancer treatment.

So, we report to security and they say they will look into it. Still nothing and it has been over a week. I had to purchase a new phone and the deliver of that was delayed. I have a phone now. But, this one will be going back for a different version.

A new chapter?? Maybe.

Those of you that have followed my blog know that I have not taken the time to keep it up. That I published A LOT during my treatment for AML and some as I was getting back to life in a NORMAL fashion.

I, being a creature of habit, like most people. You might wonder why I am writing this post. Well... not for the fun of it that is for sure. Maybe as a warning about being your own Advocate and watching those that are supposed to be looking out for YOUR well being. You should educate yourself on the tests and their meaning. Because there will be times that your health care professionals will not.

As most know I am an AML survivor. In remission for 3 years. Doctors will tell you that you are not truly in remission until you reach the 5 year mark. There is a reason for that statement. There is a high percentage that a cancer will come back. Or that you will have another form of cancer. Some say because of the treatment that you have endured from the first.

I have been fine and healthy for quite awhile, if you don't count problems with my lower back. Which is not the point of this post. My most resent need was to get my iron (Ferritin) to lower. You see I have a high iron count because of all the transfusions that I needed after chemo treatments. I was told it was not a life threatening issue. But if left untreated it would affect my heart and my liver in the long term.  

In an attempt to get my body to lower the iron levels I had to have what is called a phlebotomy. In basic terms they take a pint of blood a month from me and throw it away. So that my bone marrow will produce more blood and lower the iron count. Well, that is the hope. 

I have been through 3 such sessions. It was a pain to get them scheduled and It should have started sooner. But, that is another story in itself. It is a simple process. Like giving blood. Except they use a glass bottle. They stick a needle in a vein and collect 300 cc of my blood. What they do with it after that is a mystery. 

Between my second and third visit I started not to feel well. I think it was Christmas day that I felt a twinge or discomfort. Somewhere that I would rather not say. This twinge, that led to swelling and pain. Is what will eventually be diagnosed as Epididymitis. You can look it up. But, I would suggest you not look for pictures. LOL. It is a bacterial infection of the duct that carries sperm from the testicules.

A couple days later Cindy took me to the Walk in Clinic. That visit then turned into an emergency room visit. I had to get an ultrasound and then a prescription for antibiotics and directed to rest. I am already taking pain medicine for my back. So more was not needed. 

A follow up visit with my family physician a couple days later and there was no real improvement. He ended up adding another antibiotic to take along with the first. He suggested more rest and to keep taking the pain medication. 

So, In between the ER visit and the Doctor visit I already had a Phlebotomy scheduled. I made it to the appointment and the nurse insisted on taking Blood for a CBC. Before the Phlebotomy as we had not had one done in awhile. This would eventually help me connect a pattern that I truly wish I would had never had to find. 

I did tell my family physician that I had had a CBC drawn the previous day. He did not seem to be interested or concerned. So, why should I be concerned? But, I am always curious as to what the results are. I attribute this to being a cancer survivor and know that so much rides on the results of a basic CBC. I always look. But it can take them up to 72 hours to post to my Lakeland Mychart account. So I waited.

In the mean time I am off work, dealing with the discomfort, wondering what is happening to me?

You see the symptoms that I am having are almost exactly the same as what I had in the 8 months prior to being diagnosed with AML in 2013.

I have a lump on my chin that I thought was a pimple, yet it will not pop or come to a head like a normal pimple. This preceded the Epididymitis. I had both these symptoms in 2013. It is what kicked off a miserable downward decline. There is no real cause. No rhyme or reason. I do not have the normal causes that lead to Epididymitis. None. But yet I have it. Out of the blue.

The results of the CBC get posted and I get an email. I check the account and look over the results... And "I" notice something that is off. My WBC are low. Lower that normal. Then my RBC are out of normal range. Hemoglobin HGB is lower than normal range. Platelets are out of normal range. 

Why do I bring this up?? Because their "system" should have flagged these results as being low. It did not. If "I" had not looked then no one would have looked at these results.

I spent days wondering what the low result could mean. I mentioned it to Cindy. She got mad and told me to contact Dr. Patel's office and ask for a nurse to look at the results. I put it off for a bit. Hoping that I would start to feel better and that this was just a fluke.

So, finally I did contact Patel's office. Left a message for a nurse telling them that I had noticed some low results and what, if anything, should be done?

My return call went something like. Nurse: "Are you taking any additional medications? Sometimes medication can bring you WBC down". Me; "Two antibiotics that I had been prescribed." Nurse: "I should  be able to see what they are on your account. Let me check. I put you on hold. Be right back." Me: "OK". Not a minute later. Nurse: "Hi Anthony, Dr. Patel wants you to contact Dr. Brinker's office." Me: "OK. Is there a reason for that??" Nurse: "She just feels that they should address this with you. We will do whatever he wants us to do for you down here. But, you need to contact his office and let them know what is going on." Me: "Ok, can you fax those results to Dr. Brinker's office?" She tells me yes and I hang up.

 Now I am nervous and I call and leave a message for Dr. Brinker and his staff explaining the details. I go to work the next day and as I am leaving work I get a voicemail from Pat, one of Dr. Brinker's nurses. "Anthony, I have discussed your situation with Danielle (Dr. Brinker's physicians assistant) and we would like you to get another CBC. Preferably today... if not tomorrow. Please let  us know when you can get that done. 

Right, I know the people at Patel's office and I also know that I can get one done if I get there before 4:00. I head right there and as they are closing for the day I get a CBC scheduled and drawn. But, the lab is closed and they will send this off to the hospital for processing. Yet again I wait.

I get a call from "Pat" while I a sitting in the chair getting my blood drawn. She informs me that we hope that the first was just a fluke. That if this second test comes in low. Then they will be scheduling a Bone Marrow Biopsy for next week. Not words that I want to hear. Since I was told that I should "NEVER" have to have one again. With the stipulation of course being that I did not show any symptoms that would require one.

Well, time to wrap this up. As my luck would have it. The second test came back low. WBC 2.2. Higher than the first. But still low. I am scheduled for a bone marrow biopsy this coming Thursday, January 19, 2017. I am sure that the test result will take at least a week for all the results to come back. So, WE are now in a waiting game.

I have told my family of the situation. All I can say is that we are scared of the possibilities. I had hoped to make it 5 years and to never hear that my blood test would come back showing something abnormal. But, for now, it looks like that is not meant to be. 

I have had a 3rd CBC and my WBC are a little higher. Still not in the normal range. I have since been experiencing popping in my ear. Another symptom from before. I think we tied that one to low platelets. Headaches. Even with a bunch of medication thrown at it. They still persist. Etc. 

And now we wait. We see if I can make it to Thursday. Seems like it is up to me to decide if I need a CBC and just go make them take one. And we will have to wait to see what they tell us Thursday and the days after. We hope it will turn out to be nothing...But we do not know.