Translate

Showing posts with label Cancer Sucks. Show all posts
Showing posts with label Cancer Sucks. Show all posts

Saturday, February 22, 2014

A Favor

My very good set up a funding page for me to help with my medications.  Just one of my cancer meds costs me 451.00 a month. 


If you could please post the link to the site on your Facebook, Twitter, etc. I would greatly appreciate it. 


Thanks everyone!



https://www.giveforward.com/fundraiser/nd14/tabitha-s-leukemia-fund?utm_source=facebook&utm_medium=fb_share_stream.share&utm_campaign=BA_FBshare&og_action=hug&t=3&fb_ref=1927286








read more

Tuesday, February 18, 2014

Contest to resume soon!! (and some updates)

On February 15, 2014 marked the one year anniversary of my diagonals date.

It was my intention to write and document everything, but it just didn't happen.  I regret it.  I wish I would have written down all my thoughts and feelings through this whole process.

Well, so, what's up now?  I'm still at the hospital.  My body is not making its own platelets and no one can seem to figure out why.  I am having to get frequent infusions of blood and platelets. I am 100% cancer free!!!

I am in the process of doing some things to my blog and then I am going to start up my ugly jewelry contest again, so keep on the look out!  I've already got the piece picked out! Its not a great picture, because I used my cell phone, but I will have more soon.  I am very excited to start up my contest and to start blogging again.  I have missed it so much.





I don't have an estimated date as of yet when they think I will be able to go home.  Having so little platelets in my body, is very dangerous and they want to keep me close in case of a bleed.  It certainly has been a very long journey.

I am also sad to report that my husband and I separated.  This is all I am going to say on this subject.


As part of my insurance requirements, I am required to have a caregiver with me at all times.  My dad came out and spend three weeks with me and we went to the local mall to goof off and give me a much needed break.  We stumbled across a shop that sold extra, extra large version of candy.

Please note.  Between the chemo and the radiation, my hands tend to shake.  They don't know if its permanent or if it will go away just yet.  Because of this, my pictures tend to turn out blurry and out of focus.  Not much I can do about it other than hope its only temporary and will eventually stop.




I love Nerds, so when I saw this little guy, I could not resist.  



I am currently on 22 medications.   I feel like a pharmacy. I have to take them three times a day.  The issue I am facing now are the co-pays.  My insurance requires me to pay 80% of name brand meds and my cancer meds only have name brand.  One med alone has a co-pay of $451.00.  I don't know how people do it. 



Hang on just a little longer!  I'm going to get everything up and going again and start posting and doing contests.

Thanks to everyone who has stayed with me this long!

read more

Monday, June 24, 2013

Transplant date set

I have a date! 

I will be having my transplant on July 4th.  I think its very fitting to be having it on that day. 


I still have to have two rounds of chemo (I was so hoping I was done), 6 radiation treatments, and a line put into my chest. 

Sorry for the brief update.  Will post more soon.


read more

Friday, May 31, 2013

Last Chemo before Transplant, here I come!

Will be headed here in a bit for what should be my last chemo before transplant. This is my 'B' cycle which makes me feel like crap, but its also the shortest chemo. Shouldn't be in the hospital for more than two or three days.
Not sure if I will get more chemo or not once I arrive at Mayo.  I know I will get several radiation treatments to kill all of my bone marrow. 
This is the round where I spend most of the days I am home in the infusion center because my body can't hold on to blood and platelets. Not sure what I am going to do since the Jodi Arias trial doesn't start again until July. She kept me company in the infusion center.

Sure wish she would send those ninjas my way, though. Would love to meet me some ninjas.
read more

Tuesday, May 28, 2013

A few updates

Update on transplant:
 
My transplant has gotten delayed until the end of June.  I am disappointed as I am ready to get everything going, but it was delayed for good reason. 

The current schedule would have put me 38 days without chemo and my doctor is afraid that if I got that long without chemo, I could relapse and then I would have to start all over.  I certainly so not want that.

I will have to be admitted to the hospital for another round of chemo and then I have wait until after my body recovers from the chemo.  After my body has recovered, I will then go and start the transplant process.

Update on donor:

It is law that no personal info be shared between the donor and myself for one year. After the one year, the donor then can choose if she wants her info to be released.

However, my transplant coordinator said that I could send her letters as long as they contained no personal information. She said that I can give letters to her and she will see that the donor gets them.  





Now I have to decide what I want to say to the donor who is saving my life. 


On another note, I am keeping busy cross stitching.  This is the latest project I just completed:



I am also hooked on Downton Abbey.




 




read more

Friday, May 17, 2013

Best Mother's Day Present, Ever!

I have a donor!




I was in the hospital over Mother's Day weekend for my fifth round of chemo when Mayo Clinic called and told me that they have found me a willing and able donor.  They plan to begin the process in five to six weeks.


I'm having a hard time wrapping my head around the idea that I will literally owe my life to another human being. An anonymous human being at that. It's a very weird and strange feeling.

I wonder if this person realizes exactly what she is doing. This random person who happened into my life by chance is out there somewhere, preparing her body so she can provide me with something that will save my life and give Jared his mom, Steven his wife, my parents their daughter, my friends their friend....

She can choose to stay anonymous and I will never know who she is, but I hope she chooses to tell me who she is so I can include her in my life and my family's life.




Stages of the transplant process 

Having a bone marrow transplant is a complicated five stage process.

The five stages are:
  • a physical examination of your body to assess your general level of health
  • obtaining the stem cells that will be used in the transplant (known as harvesting)
  • preparing your body for the transplant (known as conditioning)
  • transplanting the stem cells
  • the recovery period, during which you will be monitored for any complications or side effects
The five stages are described in more detail below.

Physical examination

You will have a thorough physical examination before having a stem cell transplant. Your overall level of health before the transplant will play a big part in how well you recover after the procedure.
As part of the examination, you may have some scans to check the condition of internal organs, such as your liver, heart and lungs.

Some medicines used in the conditioning and recovery process can occasionally cause problems with your organs, so it is important to know how well they are functioning beforehand.
After the transplant, your risk of developing an infection will be increased, so it is vital to ensure you do not have any current underlying infections.

If you have a cancer-related condition, you may need to have a biopsy. This involves removing a small sample of cancerous cells so they can be checked in a laboratory.

The results of a biopsy can show whether your cancer is in remission (under control) and whether there is a high risk of it returning after your transplant.

 

Obtaining stem cells

When you've had a physical examination, the stem cells will need to be harvested.

The usual method involves removing blood from the body, separating the stem cells from the other cells in the blood and then returning the blood to the body.

Alternatively, the bone marrow itself can be collected by removing stem cells from the hip bone using a special needle and syringe. This may be recommended for certain conditions that require a transplant, or if the donor is a child.

 

Autologous transplantation

If they are suitable, it may be possible to use your own stem cells. This is known as an autologous transplantation. They can be harvested using either method described above.

Your stem cells may need to be treated with radiation or chemotherapy to ensure that there are no cancerous cells left.

If your bone marrow is being extracted, a needle will be used to remove about a litre of bone marrow.

It will usually be removed from your hip bone while you are under general anaesthetic. The procedure is low risk but the area where the needle is inserted may be painful afterwards.

The procedure may need to be carried out several times before enough bone marrow is harvested.

 

Allogeneic transplantation

If your own stem cells are not suitable, stem cells will be harvested from a healthy donor. This is known as allogeneic transplantation.

The process of harvesting cells from a healthy donor is similar to the one used for an autologous transplant.

For four days before the transplant, the donor will be given medication to stimulate the production of stem cells in their blood. On the fifth day, they will have a blood test to check they have enough circulating stem cells.

They will then be connected to a cell-separator machine. A general anaesthetic is not needed, which means the harvesting can be done as an outpatient procedure.

Blood is removed through a vein in one arm and passed through a filtering machine to separate the stem cells from other blood cells. It is then returned to the body through a vein in the other arm.

If the number of cells obtained is insufficient, the donor may be asked to return on the sixth day to make another donation. The procedure usually requires about two sessions lasting 2-3 hours on successive days.

Removal of bone marrow from the hip bone is carried out in hospital, under general anaesthetic, using a needle and syringe.

Although it is not a surgical operation, some marks from the needle will be left on the skin. There may also be some discomfort where the needle has been inserted.

As a result, the donor will need to stay in hospital for up to 48 hours and have a period of recovery at home lasting up to five days.

 

Preparing your body

As part of your conditioning, you will need to be given a range of medicines, so a tube will be inserted into a large vein near your heart. This is known as a central line and will avoid the need for you to have many painful injections.

The conditioning process involves using high doses of chemotherapy and possibly radiation. It is done for three reasons:
  • to destroy the existing bone marrow and make room for the transplanted tissue
  • to destroy any existing cancer cells
  • to stop your immune system working in order to reduce the chance of the transplant being rejected 
The conditioning process usually takes four to seven days. You will probably need to stay in hospital throughout the procedure. Side effects from chemotherapy are common and include:
  • nausea (feeling sick)
  • vomiting
  • diarrhea 
  • loss of appetite
  • mouth ulcers 
  • tiredness
  • skin rashes
  • hair loss 
The side effects can last for several weeks after the conditioning has finished, although mouth ulcers and skin rashes should stop once the transplanted tissue begins to produce new blood cells. Hair usually grows back within three to six months.

Two less common side effects of the conditioning process are lung damage and a condition called veno-occlusive disease. Veno-occlusive disease causes the blood vessels in your liver to swell, stopping it from removing waste products from your body. This can cause abdominal pain, jaundice (yellowing of the skin) and weight gain.

Veno-occlusive disease can be treated with medicines to help prevent blood clots, as well as using blood transfusions and reducing the amount of salt in your diet.

Lung damage or a lung infection can be treated with oxygen, antibiotics and sometimes other treatments. Steroids (strong medication) may also be given to dampen potentially dangerous immune reactions.

 

The transplant

It is usually possible to carry out the transplant one to two days after conditioning has finished.

The donated stem cells will be passed into your body through the central line. The process can take from half an hour to several hours to complete, depending on the type of blood cells being used.

The transplant is not painful and you will be awake throughout the procedure.

 

Recovery

You may feel weak after the transplant, and you may experience vomiting, diarrhea and have a loss of appetite.

To prevent malnutrition (a lack of essential nutrients), you will need to have nutritional support, with high-protein fluids taken by mouth or through a tube running through your nose to your stomach.

The first stage of the recovery process involves waiting for the stem cells to reach your bone marrow and start producing new blood cells. This is known as engraftment and it usually occurs 15-30 days after the transplant takes place.

During this period, you will need to have regular blood transfusions because you will have a low number of red blood cells.

You will also be at increased risk of developing an infection because you will have a low number of white blood cells. This means that you will need to stay in hospital in a germ-free environment.

You may be allowed visitors, but it is likely they will have to wear surgical gowns and hats to prevent infection. Antibiotics may also be used to either prevent or treat infections.

Once engraftment has occurred, your bone marrow will begin producing blood cells. However, you will still be very weak due to the effects of the chemotherapy.

You will also still have a high risk of developing an infection because it can take one to two years for your immune system to return to its full strength.

You may also be given medicines that stop your immune system from working (immunosuppressants) to prevent graft versus host disease (GvHD).

Many people are well enough to be discharged from hospital one to three months after having a bone marrow transplant. However, if you develop complications, such as an infection, you may not be able to leave hospital until more than three months after the transplant.

Copied and Pasted from Bone Marrow Transplant: How it is Performed
read more

Saturday, April 20, 2013

A Few More Updates

As I am now in remission and ready for a bone marrow transplant, I have been working on getting things in order and in place so when a donor is found, all of the paperwork will be done.

The main issue is that my insurance is requiring me to go a specific hospital to have the procedure (even though the hospital I have been getting treatment from thus far is a bone marrow transplant hospital).  The hospital they are requiring me to go to is in Arizona and is about a 12 hour drive from home and I can expect to be there about five months.

I am less than thrilled with the idea of being 12 hours from home for five months, but I have to do what the insurance tells me to do.  I have already huffed and puffed and tried to protest, but I got no where fast.  The stress of huffing and puffing was more than I could handle and I just gave in and said I would do whatever they wanted to me to.

As of right now, I will continue to have chemo treatments every 14-21 days until a bone marrow donor is found and then I can start preparing for the transplant.

read more

Thursday, April 11, 2013

THANK YOU!

Thank you everyone for the very kind words.  I am sorry I have not replied sooner and I promise you I have read every one of them.  You can not imagine how much your encouragement has meant to me.  I reread them often when I get a little "oomph" to get motivated or are feeling very discouraged. 




Thank you for sharing your stories and your thoughts of motivation.   It helps so much to remember that this is only a small bump in the road of my life and I am not the only who has battled (and survived). 



Thank you everyone for hanging around and reading my little blog and for understanding why my jewelry giveaway had to be put on hold for a bit.  I promise its coming back just as soon I feel I am able to do so. 



I will keep updating and posting and everyone keep leaving me motivation! 





read more

Update

 I am very happy to announce that I get to mark off something on my bucket list




Drum roll please....



I am in remission!!!

 

This also means that as soon as a bone marrow donor is found, I can start the procedures for my transplant. 

 



read more

Friday, March 22, 2013

Bald is Beautiful


I held on to my hair longer than I thought I would.  I made it almost through my first chemo treatment before it starting falling out.  Once it started, it didn't stop.  I still hung on for awhile, even as it fell out in chunks.  I would wake up in a pile of my hair own. I would pull clumps out when I showered. 

My breaking point came when I was trying to eat breakfast and I looked down and I couldn't eat for all of the hair covering my food.  I told the nurses it was time and they came in with clippers and buzzed my head.  I was really worried how I would handle seeing myself in the mirror in the first time as a bald woman, but I was ok.  I knew it was coming and I think I had been mentally preparing for it for some time. 

My next worry was how my husband was going to feel. Would he still be able to look at me as an attractive woman? Would be look at me differently now?  I asked him this very question and he responded with, "I can tilt my head and look at you if you want." 



The next thing to enter my mind was the worry I would embarrass my son and husband.  Let me add to this that I also have to wear a mask whenever I am in public to protect myself from germs.  I can handle the stares and people avoiding me as if I have the plague. 



It amuses me how people automatically assume when you see someone wearing a mask, the person wearing the mask is wearing it to protect the public.  They don't seem to understand that the person is wearing a mask to protect them from the public.  The mask is there to protect ME from YOU, not you from me.  But, I am getting on my soapbox and away from the point.

This is my mask and the one I have to wear in public.

I made the choice that I do not want to wear a wig.  I am perfectly fine with pretty hats and scarves. 

When I am at home or at the hospital, I don't wear anything and just let my bald head shine.

My husband shaved his head.  He said he couldn't have hair longer than mine.


It took me awhile, but I did share pictures of me on Facebook and the response from my friends and family was so welcoming, it made it that much easier to handle and accept.  I have also come to view my bald head as a symbol of strength, hope, and endurance.  Its not something I should be ashamed of, but a way to show that I am a fighter.  I am a winner.  I will not let cancer beat me.

And with that, I am going to share my pictures of me and my bald head, for I am not ashamed or embarrassed. 

Bald is beautiful.





read more

And this shall be the norm...

I am home, for now.  



I am finally in what is to be my "normal" routine.  I will be home for two weeks and then I will be admitted to the hospital for a round of chemo, which will last for about a week.

I have a bone marrow biopsy and a spinal tap on the first day I am admitted and on the day I am discharged. 

The two weeks I am home, I have to go every morning to my local hospital and get a complete blood count done (CBC).  If my counts are low, I have to be given blood and platelets. Luckily, that can also be done here at my local hospital and I don't have to make the four hour round trip to the leukemia hospital.  It takes almost five hours for the blood and platelets to be transfused. 

Every morning, I have to take three pills and give myself a shot.  Every night, I have to take three different pills and give myself three shots. 


This is going to be my life until they can find me a donor and do a bone marrow transplant. 


I am scheduled to be readmitted for another round of chemo on the 27th.  After it is done and I am home again for my two weeks, my goal is to announce the winners of the last necklace and purse giveaway.  I am also planning on starting up the necklace giveaway next month on the 15th, with the understanding that things can change at any time and there might be a delay in mailing the prize or I might have to end the giveaway early. 


read more

Tuesday, March 5, 2013

More Catching Up

It has been my intention to blog more about everything, but it has not been easy. 

There are so many people in and out of my room all day, checking, poking, prodding listening...   it makes doing much of anything impossible. 

I know for sure I will have to be in the hospital at least another 14 days. After those 14 days, I will be evaluated to see if they feel like I can go home for a little bit before my bone marrow transplant stuff starts.

I sure hope so.  I'm going stir crazy!!!  
read more

Wednesday, February 20, 2013

Catching Up

 I have been writing and making notes since I was diagnosed, I just wasn't ready to talk about it until now.  Here are the most current entries to get everyone caught up.    
I now have an official diagnoses: Acute lymphoblastic leukemia (ALL) with the Philadelphia chromosome. 
It all started because I was doing some grocery shopping at Wal-Mart and I started to feel sick so I headed to the check out.  All of a sudden, I couldn't breathe, I couldn't see, and then I woke up looking up at the ceiling.  
This was the first time in my life that I have ever passed out.  It left me with a nice goose egg on the back of my head. 
 
My husband took me to the doctor to have it checked out.  My doctor was concerened I might have blood clots so I was sent to the ER who did a CT scan.  It was confirmed that I had two bloods in my lungs. 
They went on to try to find out why I have the clots, and to make an extremnily long day and stroy short, they found the leukemia. 
I was put on an ambulance and taken two hours from home to the nearest leukemia treatment center.  

Have you ever wanted to know your number? You know, how you stack up to the rest of society? I now know. There are 4,000 new cases of ALL every year (most of those being kids as ALL is usually a childhood cancer, only 1/3 of the 4,000 are adults) and of those 4,000 only 30% have the Philadelphia chromosome and of the 30% that have the Philadelphia chromosome, the number of people who have the cyst on their brain is unknown. I am told I am the first one that the doctors at the hospital has encounter. I know I'm special (ha), but this is taking it too far!

The term "Acute" means very fast growing and without treatment, it grows very fast and kills swiftly. Passing out and going to the doctor to get checked saved my life. I have been told that mine was caught super early. Leukemia has no "stages" as some other cancers do.

Will be getting my first spinal tap soon. This will determine if there are cancer cells in my central nervous system and the fluid surrounding my brain. We know there are no cells in my brain, but there may be some around my brain. Hoping it was caught so early, that the cells have not had time to get into my CNS and cerebral fluid.

Here are some links, but please don't freak out when you see the statics. They aren't good. You have to remember that ALL attacks with vengeance and a lot of this data is based on patients who were untreated for a significant about of time. The long term survival rate is about 50-60%.

Unfortunately, this means that of the 3,999 other cases that will be diagnosed this year, their survival rate dropped by one, as I WILL be one of the 50-60% that gets through this. Steven and Jared can't get rid of me this easily.

http://en.wikipedia.org/wiki/Acute_lymphoblastic_leukemia

http://marrow.org/Patient/Disease_and_Treatment/About_Your_Disease/ALL/Acute_Lymphoblastic_Leukemia_%28ALL%29.aspx

http://en.wikipedia.org/wiki/Philadelphia_chromosome
 
Got some more news. 30% of people have something called the Philadelphia chromosome. People with this chromosome have to have bone marrow transplants.

I have the chromosome. They have to get me into remission and then they will do the bone marrow transplant.

The issue right now is the cyst on my brain. They need to know if meds can go through the cyst. If it can't, I will have to have neurosurgery to have the cyst corrected. They are worried meds won't cross it and they don't want me to relapse at that one spot. Will go this afternoon and test that. The cyst that is on my brain is no big deal. I was probably born with it and, had this not happened, I would have never know it was there.

The best bet for a donor will be an unrelated donor. The best donor is usually a sibling and since I don't have one, an unrelated is the next best option, with a parent or child last.

A very special thank you to everyone who has sent me flowers. Unfortunately, I am not allowed to have live flowers in my room. I should have said something, but you guys know me, I don't think about people buying me stuff.

Now, as far as the blood marrow goes, there are donor centers all across the US that you can go into and have your bone marrow tested. You never know, you might be able to save someone's life. There is someone out there right now that went to one of the centers and got tested that just might save mine.

I will keep posting updates and I know them. It's kind of a hurry up and wait situation right now.
 
  
Today has been an exhausting today. Had three chemo treatments today, a spinal tap, and two CT scans.

I already mentioned the cyst that is on brain. The two CT scans today were to find out how much that cyst is going to play into my recovery. They are trying to determine if the Chemo is going to be able to get through the cyst and get treated.

The CT scan proved today that the chemo can NOT get through the cyst. So, what does this mean? Does this mean that it will be only one spot to not get treated? Could this mean I could relapse with this spot? Does it mean since Chemo can't get through it, can the Leukemia get through it? These are answers we just don't know yet. As soon as they know how this cyst could or could not affect my treatment and remission, then they will know how to proceed with that part of the puzzle.

We will have the test results from the spinal tomorrow. They did the spinal to see if there are Leukemia cells in my CSF (cerebral spinal fluid). http://www.nlm.nih.gov/medlineplus/ency/article/003428.htm You know you wanted an education, LOL!!!
 
 
So far, the only update is that I made the decision to withdraw from school (for now). Its breaking my heart (since I am SO close) but its the right thing to do. I am leaving in good standing so I will be able to pick up where I left off and get my last 6 classes done and get my degree. The school was very understanding and made it painless.
 
Chemo round two. Blood sugar is too high, getting round of insulin. Blood platelets are low, getting round of platelets and two rounds of blood. Chemo round three is scheduled for this afternoon with a spinal tap. The chemo will be infused directly into my spine. Test to check brain cyst also scheduled for today.

It's going to be a long, tiresome day.  I will post updates as I know more.
 
 
 My biggest issue right now is modesty has been thrown out the window and I have to get used to people helping me. I'm used to being the caregiver and if I need/want something I get it myself.

Now, I need help showering and even walking (as I have a pick line and more tubes than Steven's aquarium and I'm still horrified at the chance of blacking out again) and I have to ask if I want or need anything.

More later as I have more.
 

 



 
  
  
read more