it took six tries and a hour to get a vein yesterday before my scan…and FIVE veins on my left arm blew…that is a total of SIX blown veins in a week…the only explanation has to be that the anemia is doing something to my veins…cause this has never happened before…

*

This might sound weird but I think God prepared me for it…on Thursday I decided I was going to have a ‘Good Attitude Day’ Saturday…I was not going to be annoyed if I had to wait…I was going to be nice to and patient with everyone…and I was…I wasn’t bubbly by any means…but I did not have an attitude…it isn’t their fault I had to get this test on a week I work…it isn’t their fault if I have to wait a while…and they don’t deserve my frustration…things need to be done right, I’m not at a store, I’m in a hospital, people matter, and I am not always the first or the most important…I am thankful for the preparation…God knows me…knows how I work…and is teaching me…everyday…

*

I like nothing more than to be a human pincushion, and having a snake of bruises up my arm…they are not as bad as the first bruise but I definitely look like I’ve been abused…I have to go Monday morning for more blood work…here’s hoping that  they can find a vein that will give blood!

Got my first blown vein Tuesday…

can we say ‘April gets her blood taken too much’? I know it is not an unusual thing to have happen but…it was weird…you get a big bubble of blood under your skin and then it is bruised for a while…isn’t it pretty?

the doctors appointment was…interesting, I guess…Dr. M discussed with Dr. R (the hematologist/oncologist from IU) my blood test results…they decided that the higher numbers are probably due to the hemolytic anemia and not the lymphoma…Dr. M said that what is happening is not something typically associated with remission…that this anemia stuff isn’t related…

so, from what I understand (which isn’t much) this may or may not have happened whether I had gotten cancer or not…he is going to keep an eye on my numbers (ie; blood work every other day) and most likely start me on the crazy high dose of steroids again early next week…LUCKY ME! side-effects heaven on my week off…

He said that it would be a few weeks of keeping an eye on my blood counts to see if getting my spleen removed is what is required…IF they can do it laparoscopically I would be in the hospital for two days and then the recovery time…because of my weight they may have to take it out by opening me up…that would require longer in the hospital a week of rest and then being careful for a while…

My recent CT scan came back clean…no signs of lymphnodes…but it did show an enlarged spleen…

I get my PET scan Saturday morning at 7:45…I am NOT going to get much sleep that day…I have to kill an hour and a half between getting off work at 6 and my appointment then it will probably be 11 before I get done…then I get the privilege of going home and trying to sleep…before going back to work at 6…but I’m not complaining…nope, not me…I’m pleasant…heck…I’m even cheerful when I don’t get enough sleep…

this is Wednesday, and it feels like the week is going so very slowly…I had three people at the cancer center tell me I looked really tired…I guess it is showing…I guess I am not trying hard enough to hide it…

the house I am in right now is more physically demanding than I am used to…I have to get the client up every two hours to use the restroom (she is in a wheelchair, but is able with a little help move herself from place to place)…and the entire house is linoleum, which is a bear to sweep/mop…my back and neck ache for the first time in over a year…and tonight she did not want to sleep....

I also asked the doctor if I was still going to get a month of radiation and he said it was on hold for a while...but I will probably still be getting it after the anemia stuff is figured out...

hey! did you catch how casually I threw the word REMISSION in there? Yeah, that is how the doctor said it...just in the middle of conversation, like I already knew this information…I didn’t know I WAS in remission…you would think that is something that would be more formally discussed…not so sure how I feel about it…I am going to see him next Thursday to discuss my blood counts and the results of the PET scan so I will be sure to more pointedly discuss this Rword he just so casually threw around…and if it is a concrete thing or not…

Blood work and appointments…

I have been getting blood work twice a week to keep an eye on the anemia…apparently the results from Thursday were concerning…because today we got a call from the cancer center stating I had to start steroids (again) TODAY (they said it was important I start them today) at least this time it is not such a crazy high dose…they also said that the doctor wants me to get more blood work on Monday and then to see me for an appointment on Wednesday…

I’m a little freaked out by this…I was not supposed to see the doctor again until after my PET scan on the 30th (to discuss the results)…what does he want to talk to me about? he never does anything in the appointments other than press on my stomach asking if it hurts…

so we begin another time of waiting…

waiting to see what the doctor has to say, what specifically his concerns are with the blood work…

waiting to see what the next step will be…

waiting for life to get back to some kind of rhythm…

also, what sucks about this impromptu appointment is that I start my new hours next week…I will now be working 7pm to 5am…and it is stressful for me to figure out a good time to have an appointment…BLAH! and since he isfitting me in on Wednesday I will most likely be waiting a while no matter what time I schedule the appointment…

Here are a few shots from yesterday…

our beautiful trees…

leaves changing color daily…

blustery seems to describe the weather,

and how I felt mentally and physically…

it was a chili kind of day so I went to the store to pick up some beans, sauce, and ground beef…between getting to the store, and carrying the groceries in I could not breath…I also had a bit of a breakdown when I wanted to change my sheets and didn’t have the energy…

it is so frustrating, day after day, the feelings of inadequacy this cancer brings…

inadequacy in not being able to work regularly thus, inadequacy in not being paid regularly

inadequacy in regularly not being able to do ‘normal’ things around the house

make my bed (ie; change the sheets)

wash the dishes

walk the dog

clean the bathroom

cook

inadequacy in not being able to be emotionally genuine to myself or others

inadequacy in not being able to support others in my life (ie; be the friend I know myself to be)

inadequacy in not being the support to my mom I wish to be

inadequacy in not always wanting to always get out of bed

inadequacy in not having the energy to help in the running of errands or shopping

But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.  -2nd Corinthians 12:9

Tonight I was laying on the couch, thinking about eating dinner and a visitor came to the door asking if I was too tired to come over an play a game…to which I said “NO! I am not too tired to come over and play a game”…I lifted my head from the couch and there she was…JAYME!

She is the older sister of one of my closest friends and has become through the years a special friend in my life…she and her husband are missionaries in Portugal and they flew in yesterday for a week long visit state side…

There are people in life who are so genuine, that you are safe the second you see them…I am safe with Jayme…always…not sure I can stress what a gift that is…

so, I got up, got dressed, and went to her parents house where we ordered pizza, and played the game called The Settlers of Catan…I’ve played it a few times with their family over the years…it is a bit complicated and takes more than one game to get into the groove…your mind has to think differently than with just a card game…but I really enjoy the challenge…

I have never eaten pizza from a Casey’s gas station before, and it was really really good! I had three pieces of the sausage and hours later it has settled really well in my stomach…I don’t crave much and don’t find too much good because the steroids have killed my taste buds along with other crap side effects…so if you ever want a pizza and have a Casey's near, try it out…I don’t think you will be disappointed…

Look how flushed my face is…it is like that a lot…I can’t wait to have hair again…I’ve let go of any vanity after I started losing my hair…but when I see pictures like this I wouldn’t mind having it back…

I’ve not had any kind of night out in a long time…I was tired, but those few hours of company and laughter will last me days…

Thank you Jayme, for popping by and sharing some of your time home with me!

I’ve shared with you a couple hours of my night…How was yours?

(I would like to preface this with the fact that there is some boring Wikipedia facts in here…they are mostly for my benefit…as this is my running log of the goings on of this cancer…feel free to scan through anything that might hurt your head too much to think about…but stick through to the end because that is when I am going share something good the doctor said…)

This morning we got up and went to the cancer center for blood work…to kill some time we went to a few thrift stores (cleaned out my trunk, woo hoo!), and came back for my doctors appointment…magically they were very on time which was nice…

what I did not expect was that I was going to chemo today…I thought it had been placed on hold for a while, but I was WRONG…so I’m hanging out here in the cancer center getting chemo #8…it is a good thing that mom took the day off, so she was able to bring me lunch and my computer, and will be here shortly to take me back home…I was completely unprepared…I had brought nothing with me to keep me occupied…

The verdict?

Since starting the high does of steroids on Monday my liver enzymes have gone down…now this isn’t to say that the problem (hemolytic anemia) isn’t still there…he said that hemolytic anemia can be hard to get rid of (and could result in a splenectomy)…for instance while certain numbers are lower than Monday others are higher…

one specifically being reticulocyte which is at 7.46 and should be at the highest 1.59…the nurse has explained to me that it is my bone marrow working…that they (the doctor, nurses, and chemo) are knocking things down in my body and it is fighting back…When there is an increased production of red blood cells to overcome chronic or severe loss of mature red blood cells, such as in ahemolytic anemia, people often have a markedly high number and percentage of reticulocytes…Reticulocytosis is a condition where there is an increase in reticulocytes, immature red blood cell. It is commonly seen in Anemia

I tend to get a little freaked out when numbers are SO much higher or SO much lower than they should be…

My LDH which I talked about in one of my last posts went from 560 to 316 which was a good sign…

Another concerning number for me are the lymphocytes they should be between 17-40 and mine is at 1 a measly ONE!…Lymphocytopenia, orlymphopenia, is the condition of having an abnormally low level oflymphocytes in the blood. Lymphocytes are a white blood cell with important functions in the immune system…so basically my immune system is suppressed…

The doctor said I CAN get a flu shot but that I have to wait until I am done with the steroids…

We won’t know for a while if it is JUST the steroids that are helping or if it is going away on its own…I will be on a high doses of steroids for almost 20 days before we will know…I started Monday on a 12 day dose which is turning into 17 days with the chemo I’m getting today…I will be getting blood work twice weekly to monitor all these funky numbers…

The PET scan has been pushed back to the 30th of October…

My red blood cell count is the highest it has been in A LONG TIME…and it has felt good…right now it is at 10.8! which explains all the energy I’ve had this week to do some organizing…our plans for cleaning the attic may be thwarted by this chemo treatment today but at least some of what I wanted to get done did…

OH, how I have missed organizing…it is so flipping satisfying! I can’t handle it! Also the steroids make me a little wired and jittery so that is another reason I have had the gumption to get things done…

I had been feeling guilty about taking all week off work but I guess somehow I knew it was the right thing to do because now that I got chemo today there is NO way I could have worked tonight, Saturday, or Sunday…guess that is to say you should trust your gut…

In regards to my CT scan, Dr. M said that they look great and show NO signs of cancer…I’m not comfortable saying things are done, but that was great news to hear from him after the rollercoaster the funky numbers have been taking me on…I can’t wait until the results of the PET scan because then I think I will be able to let my heart rest…I’m am guarding my heart the best I can against disappointment and setbacks…which for me comes in being realistic and not too terribly optimistic…

So, Monday was interesting…I went in to the cancer center at 7 for blood work to determine if I could get chemo that day…the results came in and my liver enzymes were higher than they were on Friday…Dr. M ordered a more detailed blood test…the results came back, and he decided he wanted to order yet another set of tests and wanted to squeeze in an appointment with me that morning…so, NO chemo was being done that day and I was disappointed…

I had a bit of a breakdown…well a big bit of a breakdown, around the time he ordered the third set of blood work…I got the results of the first and was COMPLETELY freaked out by one of the numbers…my LDH is 560 the highest it should be is 190 and the LDH can be an indicator of the cancer being present…I swear I could feel the cancer taking over my body…I know it was all in my head and that the high LDH could be for a number of reasons unrelated to the Lymphoma…but I think it was just time for a breakdown and if you are going to have one, you want to have one in the cancer center surrounded by nurses that know what they are talking about, and can give you perspective…basically Charlotte (one of the nurses) told me that I can’t let the numbers define me or how I feel…and that my body may just be letting them know that my body is tired and needs a break from chemo and treatment for a little…and she was right...

I can not let the numbers define me just like I can’t let the diagnosis of cancer define me

The last set of blood work was ordered at a little after 9 and my impromptu appointment with the doctor was SCHEDULED for 11…I did not see Dr. M until almost 1 p.m. by that time I was SO tired of being in the cancer center and I was ready to leave…

My conversation with Dr. M was CONFUSING to say the least…I don’t think I can coherently explain everything he said but it could MAYBE be a game changer…I have yet another appointment with him on Friday morning…he started me on a RX of steroids and wants to make sure my liver enzymes are going down…most specifically my bilirubin level…

Right now it seems I have Hemolytic anemia (here is a copy and pasted explanation of what that is)…

“Hemolytic anemia is a disorder in which the red blood cells are destroyed faster than the bone marrow can produce them. The term for destruction of red blood cells is hemolysis. There are two types of hemolytic anemia, including the following:

• intrinsic - the destruction of the red blood cells due to a defect within the red blood cells themselves. Intrinsic hemolytic anemias are often inherited, such as sickle cell anemia and thalassemia. These conditions produce red blood cells that do not live as long as normal red blood cells.
  
• extrinsic - red blood cells are produced healthy but are later destroyed by becoming trapped in the spleen, destroyed by infection, or destroyed from drugs that can affect red blood cells. The following lists some of the causes of extrinsic hemolytic anemia, also called autoimmune hemolytic anemia:
  
  • infections, such as hepatitis, cytomegalovirus (CMV), Epstein-Barr virus (EBV), typhoid fever, E. coli, or streptococcus
    
  • medications, such as penicillin, antimalaria medications, sulfa medications, or acetaminophen
    
  • leukemia or lymphoma
    
  • autoimmune disorders, such as systemic lupus erythematous (SLE, or lupus), rheumatoid arthritis, Wiskott-Aldrich syndrome, or ulcerative colitis
    
  • various tumors
    

Some types of extrinsic hemolytic anemia are temporary and resolve over several months. Other types can become chronic with periods of remissions and recurrence.

What are the symptoms of hemolytic anemia?

The following are the most common symptoms of hemolytic anemia. However, each individual may experience symptoms differently. Symptoms may include:

• abnormal paleness or lack of color of the skin
  
• jaundice, or yellowing of the skin, eyes, and mouth
  
• dark color to urine
  
• fever
  
• weakness
  
• dizziness
  
• confusion
  
• intolerance to physical activity
  
• enlargement of the spleen and liver
  
• increased heart rate (tachycardia)
  
• heart murmur
  

The symptoms of hemolytic anemia may resemble other blood conditions or medical problems. Always consult your physician for a diagnosis.” (link)

I also found somewhere (I can’t remember where) that one of the reasons your LDH can be high is because of Hemolytic Anemia…so now my heart can calm down a bit…

The symptom of confusion really made me smile because on Sunday I got a glass of water to put in the dog’s bowl and realized that her bowl should really be cleaned, as I was rinsing out her bowl and putting clean water in, I poured the entire of cup of water I was holding in my other hand onto the counter making aHUGE mess…I could not understand why I did that…it was like my hand was going in slow motion and I just couldn’t stop it…so if I can blame that moment of stupidness to Hemolytic Anemia than I’m gonna take it!

So Thursday morning EARLY, I have a CT scan of my neck, chest, and abdomen…and get to drink those great bottles of barium! I always choose the banana flavor…and then Friday morning I go to the cancer center for blood work and a doctor appointment at 10 hopefully he won’t be TWO hours behind again…

The last few days of trying to have a good attitude have been working really well for me…and today I thought you know what? I can have a start over and it doesn’t matter if anyone else gives me one or not…I give myself a start over…God gives me a start over every single day…and who am I to go against his grace and mercy? I also have the power to give others in my life new starts, give them grace…I can forgive them whether they ask for my forgiveness or not (for a while I was bitter and felt like I needed people to see what they were doing and acknowledge it to me)…as long as I do it with a pure heart and mean it…I won’t say that it will be easy, and that at times I won’t want to hold it against them, but I will TRY which is the new attitude…I wonder if there is an acronym for the word try…anyone have any ideas?

Even though I am not getting chemo this week I have still decided to take the week off of work…with the symptoms of what is going on and the way the steroids can make me a little crazy like…along with my morning appointments it would have just been too hard to work…in two weeks when I don’t get a paycheck maybe I will think that I should have pushed through…but probably not…maybe…

hmmm, ask me in a week from Friday…

“If you wanna be somebody…if you wanna go somewhere…you better wake-up and pay attention…” –Sister Act II

I love that movie! I would rewind and play the end song over and over again…good memories…

I woke up this morning realizing I’ve been letting the cancer win…Honestly, I’ve wished it to win, the uncertainty of test results, and what that means for my life has been a bit too much…to deal, I’ve gone into my safe place…the shell that protects me…my house, my room, my bed…

So, today I am going to TRY…at least I think I’m going to try…it is only 8:30 in the morning…

The plan is to go to a children’s bible quiz at church…to get a blood transfusion (where someone is coming to hang out with me)…and well I don’t know what else…but I’m going to TRY…and that is going to start with taking a shower and making my bed

It is exhausting living in gray…I would love, once, to go to a doctors appointment and come away feeling like there was a game plan with a finish line in place…

Unfortunately that does not happen…I was supposed to get chemotherapy #8 today…it has been postponed until Monday because my liver enzymes are again too high…

This is a disappointment because I work hard to try and be able to still work while getting treatment and moving chemo to Monday means that I will be missing an ENTIRE week of work…which is essentially two weeks of pay, I just got paid today and will not get paid again for a month…it is overwhelming…when you get sick no one pays you…it isn’t your new job…everyone may say to you “Your job is to take care of yourself and get better” taking care of yourself doesn’t not come with a paycheck…and my car loan company or mom’s mortgage holders don’t accept payment in the form of doctors notes…mom tells me not to worry about it, she tells me not to feel bad that I can’t work…but it is hard not to feel bad…I feel so helpless…

The last chemo laid me up for a week, in bed too exhausted to do anything more than go to the bathroom…the doctor said that I should expect the chemo I get on Monday to effect me the same way…he said that I have had HIGH doses of chemo for a long period of time and that it is expected that the exhaustion will just get worse…so the tiredness I experienced last time was not unexpected and he is not too worried about that…

I will be getting another PET scan on October the 23rd and see the doctor to discuss the results on the 27th…if there is still activity he will be referring me to the University of Indiana…Dr. Robinson…I THINK he is a hematologist oncologist (specialist in cancers of the blood)…if I am referred to him one of two things could happen…

#1. He could recommend just monitoring the activity and see if it grows/how quickly it grows ect…

#2. He could after some testing…recommend a bone marrow transplant…I’m a little freaked out by this news…Dr. M said that I may have to have another bone marrow biopsy ect…for Dr. R to determine the right course of action…Dr. M also said that while that was getting figured out I could receive more chemo than just the one coming up on Monday…I’m scared to google bone marrow transplant because I think I would be even more freaked out…maybe later tonight when I have more courage I will see what a transplant entails…

Of course nothing is certain, these are all just possibilities if there is still activity present after the next PET scan…but it is much better for me to be emotionally prepared for what COULD happen…then IF it does happen I won’t fall apart…

What little hair I have grown back has been sensitive this week, and just today I was able to easily pull it out…so I guess tonight I might have mom go ahead and shave it again…

Tomorrow afternoon I will be getting another blood transfusion because my numbers are still low…I just can’t get to normal…

I’ve been a bit tired this week, but thought it was more emotional than physical, but I guess the combination of both drained me…On a positive note the first few days this week I felt good enough to do some cleaning which I haven’t been able to do in months…I enjoyed being able to sweep, clean the dog fur off the couch (she has been shedding like CRAZY!) and really clean the kitchen…as the week progressed my energy has decreased a bit but I’m still feeling pretty good…and I will enjoy this physically feeling good for the next three days…

Maybe I will be surprised and the chemo on Monday won’t kick my butt like it did last time…

Emotionally, I feel kind of crushed…I decided to message someone that I felt hasn’t been a support to me through this time and the message I got back was basically that who I am and what people THINK they know about me have made me alone…apparently I am disrespectful, and I expect too much, which makes people not want to do anything for me…

I have no doubt that this person could have taken some things I’ve said or done as disrespectful…I would even agree with her…but I didn’t know that it would result in my being completely dismissed…I’ve been trying really hard this week not to let what this person said to change how I see myself, but it has been hard…

I’m sorry that she thinks she knows what I expect when she hasn’t spoken to me in over two months…I can only surmise that what she thinks is what other people in the church think as well and that is why I have not been supported…I guess I didn’t realize I was such a horrible person and to reach out to me would be such a burden…it is to the point now if I was reached out to I’m not sure I would be open to it…(to be fair, there were a few people who came together and mowed mom’s lawn for a few weeks this summer, it was a great help for sure).

I swear if I see one more T.V. show or read one more story where someone had cancer and were surround by people who supported them, came to help them ect…I might just kick the TV in…I’m pretty secure in who I am, but this has knocked me to my knees…I would challenge anyone who thinks they know me to reevaluate…I was talking to one of my best friends yesterday and just talked about what has happened (I was really honest about everything) and she was just so confused as well…it makes my heart hurt that the people who REALLY get me, who have seen my soul, the people who know me, and love me, live SO far away…if I could fly to the middle of nowhere Wisconsin and be loved on I would…in a heart beat…and if she didn’t live 11hrs away, have two SMALL children, was a teacher, and have a husband who had surgery on his hip and had to be there to support him…I know she would be HERE, she may not be HERE physically but she is present emotionally, and it is genuine…and oh my word that is everything!

When you die do you want to be remembered that you worked at the church everyday or that you WERE the church everyday? That is the last I will have to say about how I am doing emotionally for a while…I don’t want to beat a dead horse…and I don’t feel like I ‘m doing a very good at articulating it…