Lovely health insurance changes and too many damn meds!!

Wow, so my first month of medications have cost a total of $260.00.  That was on the old insurance plan too.  I have no idea what they are going to cost with the new HAP plan.  At least I am off the Decadron now so that’s one less medication I need, unfortunately that one was only about $10 a month.  Jay started a new job while I was in the hospital, so we had to switch health insurance plans right in the middle of everything going on, which has been a mess.  The new plan went into effect on 10/1 and I still don’t have my contract information.  Then we got a letter in the mail from Jay’s new employer stating that they are dropping their HAP plan and switching it to BCN the first of the year, so I have to do this all again in three months, lol.

This really is par for the course for me, as you will come to know from this blog nothing is ever easy for me.  There always has to be some complication.  I tell everyone that I always seem to have to do things the hard way, so much so, that anymore I just laugh at it.  It really has become a running joke, lol.  What really frustrates me is that I went from a PPO to an HMO where you have to have a Primary Care Physician.  Today I found out two things that made me just sigh.  HAP is managed by Henry Ford Health.  All of my cancer doctors are Henry Ford Docs.  So this new plan would actually work out well for me, but now I know I am going to have to switch from HAP to BCN very soon; again with the complications.  Then, I received an e-mail that the new PCP that my oncologist wants me to pick as my Primary doesn’t have any new patient appointments available until mid-November.  Well, I needed him as my doc and able to write prescriptions for me like a week ago!!  So now, I am going to have to see if my oncology office can call them on Monday to get me an appointment sooner.  Which, I know that they will do that for me, but it’s just yet another thing that can’t go smoothly, lol.  Like I said, everything with me is complicated, lol.

Now, back to the meds!  When it comes to medications, I usually get at least half of the side effects if not all of them.  Through my first chemotherapy rounds, I actually tolerated the hard stuff (dose dense Adriamyacin/Cytoxin) pretty well until about half way through.  Then it hit me pretty hard and made me sick enough that I slept through most of it and hardly remember those last 4 weeks now.  The second round at that time was Taxol and I began that in combination with beginning my Herceptin treatments.  That round lasted 12 weeks of weekly IV infusions.  The Taxol itself didn’t cause me too many problems.  I had some of the side effects of very mild peripheral neuropathy (tingling in the toes and fingers from nerve damage) and nail loss.  I ended up loosing my thumb nails and the nails on my big toes, but I was able to keep the rest of them and they didn’t turn black which can happen as well.  So I counted myself lucky in that respect.  Now the premeds that they give you before the infusion of the medication on the other hand wrecked havoc on me.

Taxol comes from the bark of a yew tree, so allergic reactions to the medication are very common.  They stop this by giving you IV Decadron and Benadryl before the Taxol.  As you can see from the photos and my earlier blog, Decadron and I don’t get along very well, lol.  I get all of the side effects from it and go into full on pseudo-cushing’s syndrome from Decadron.  Decadron is also very damaging to your bones, which I now have joint problems from and lots of issues with my spine.  Two bulging disks in my lumbar spine and spinal stenosis (narrowing of the space between the vertebrae) in my thoracic spine.  I am sure my latest round of Decadron has only furthered this damage as well.  Well, with Decadron you can’t sleep.  The first 4 days after each infusion every week it was impossible for me to sleep.  Then I would slowly be able to get a few hours of sleep and would finally get some sleep the day before my next infusion just to start the process all over again!  IV Benadryl would make me sleepy but I got restless leg syndrome from it.  So I would be there for my infusion feeling so tired but I couldn’t fall asleep because I couldn’t stop moving my legs, I looked like a crack monkey sitting in the infusion chair, lol!  Thankfully, the Benadryl effects would wear off in a couple of hours.

Now I’m taking Tykerb and Xeloda, which are oral chemotherapy meds.  These two medications alone make up $166.00 of that medication cost above.  I’ve been taking the Tykerb for 12 days now, 5 pills a day, and I have developed a rash from it all over my face.  The good news is that the rash is an indicator that it’s working well.  In studies, patients that developed the rash live 50% longer than those that don’t.  So obviously that’s a good thing, but I still have this acne looking rash all over my face and neck, which kind of sucks, lol.  I started off on 8 pills a day of Xeloda, which is the highest dose possible.  I made it 10 days on this dosage before having to stop.  One of the severe side effects is diarrhea.  Of course, that’s the one that hit me, lol.  It was so bad and acidic that it burned and blistered everything it touched.  That was even with getting directly into a shower. I now have a new appreciation for babies and what diaper rash feels like!  Ouch!!  Desitin is my new best friend, lol.  So the doc has bumped me down to 6 pills a day.  We’ll see how this goes, lol.

Thankfully, though, I am seeing improvement in my arm function every day.  I went from only being able to move my thumb and forefinger right after surgery to now having full finger movement, wrist rotation, elbow flexion and extension and now I am getting shoulder movement back.  My right arm is still very weak in comparison to my left but strength will come back with use.  My right leg is still not moving, but I know with time and a brace that I will be fitted for once this swelling goes down I will be able to walk with a walker.  Who knows, the brain is a mysterious thing, I could wake up tomorrow with it just working, lol.  Video to come soon of the new arm movement!!

Scans, Scans and More Scans!!

I haven't posted pictures of any of my scans yet.  So I figured I might as well do that today.  The first photo is from my PET scan that was performed back in September of 2010 right before I began chemotherapy.

The top 3 pictures show the IBC as the thickened area of skin.  The hot spot that is indicated with the green arrow in the top middle photo is the IDC tumor that I had.  In the bottom 2 left photos you can clearly see the size difference between the two breasts as well as what looks like two or possibly even 3 additional IDC tumors that were beginning.

The second photo is also from my first PET series.  This photo indicates the lymph node involvement in my right axilla.

The next photo shows the mass in my left parietal lobe that was removed via the craniotomy on September 2nd.

This image shows the smaller mass in my cerebellum that they performed SBRT/Radio Surgery on to remove on September 16th.

This is my post surgical MRI that was performed after my craniotomy on September 2nd.

Looking back on things now, I was having neurological symptoms from the tumor but they were being masked by the back pain I was having.  When I was admitted they did a thoracic spinal MRI and this explains all the back pain!

The clinical diagnostic report says: very small disk protrusions at T7-T8, T8-T9, and T9-T10 without spinal canal or neural foraminal stenosis.

 The order wasn't for my lumbar spine so there were no comments on it but as you can see I also have bulging  disks that are worse than the ones in my thoracic spine between my L3-L4, L4-L5 and L5-S1.  The note between T12-L1 shows a hemangioma.

Steroids are not your friend, mmmmkkkay!

So excited today!!  I’m starting to get movement in my right shoulder!!  I still can’t lift my arm all the way up but I can lift it a bit and that’s a start!  My leg is still being stubborn, but to be honest if I can get the use and strength back in my arm it’s going to make dealing with a bum leg much easier and for that I am sooo thankful!

I have to admit this has been a rough first week home.  Being on steroids to control swelling in my brain for 36 days now has not been kind to my body.  It’s funny how a drug that stops inflammation and swelling in your head causes EVERYTHING else to swell!  I swear I look like Cartman from South Park, lol, and have had his appetite too.  No kitty, that’s my pot pie!!!!  I feel like a 500 lb version of me.  Thankfully, today is my last dose of Dexamethasone!!  The downside, now that the steroids are gone the pain is worse.  I hate taking pain meds, but they are going to have to be a part of my life for awhile now.  At least things are moving in the right direction, and I know that soon enough the extra weight and stress that it’s adding to my already sore and tired muscles will ease as it comes off.  This too, shall pass!!

Me after 9 days in the hospital and steroids.

Me today after 36 days on steroids.  Holy swelling Batman!!

My new arm movement!!!

I apologize for the terrible quality of the video, but at 5 am I couldn't wake someone up to take it for me, lol.

2011 ACS Making Strides Walk in Detroit

Please take a moment to check out the following link.  My good friend, Maia, is participating in this walk on October 15th.  She is doing it to honor all the women in her life that have been lost or touched by breast cancer including myself.  If you can spare even $5.00 to help it would be greatly appreciated!

Please help support the Princess Warriors!

Wiggle your big toe!!

Ok, well, maybe not so much my big toe right now, lol!  I can say that my right arm is improving daily though and for that I am so very thankful!  Through all of this my mind keeps flashing back to the movie Kill Bill because that is the kind of determination I have to get myself moving back in the right direction!  This experience for me has been so humbling.  The amount of support, care and community involvement I have seen has really renewed my faith in people.  I hadn’t realized how jaded I had become and for that glimpse back into community I am so very thankful.

I haven’t cried over my situation, felt sorry for myself, or have ever wanted anyone’s pity but the outpouring of people wanting to help or just let me know that they care has turned me into an emotional, bubbling idiot, lol.  People, like my friend Shawn, whom Jay and I met online in a video game several years ago dropping everything to drive 600 miles from Knoxville, to give my husband a hand for a weekend while I was in the hospital was one of those humbling moments.  All of the support from my daughter’s school.  Seeing donations being made to help us raise the money for a wheelchair ramp, or to help pay for my medications that I will have to take for the rest of my life, not to mention the countless other expenses that we will have just to improve the house so that I can move around more independently has just been breathtaking.

These things only add to my determination to work hard and beat this for as long as I can.  God truly has given me a wonderful opportunity to share my story and struggles to help bring attention to the type of breast cancer that I have, Inflammatory Breast Cancer.  I plan to fight and do what I can to raise awareness about this horrible disease.  Most importantly, I do it for my daughter.  To be here to see her grow, teach her about strength, and hope that she doesn’t have to face this herself in her future.  Of course, as a mom that’s my biggest fear, that she will end up with this as well.  Thankfully, at least now we know she’s at risk and can monitor it better than I did for myself.

In closing for tonight, I am posting two quick videos of my arm/hand movement from the hospital.  I will post a newer video soon of where I am at now so that I can share my progress with all of you!  Hopefully, I post these right, lol.  The first video shows all of the movement in my fingers has returned.  I woke up from surgery only being able to move my thumb and index finger.  The second video shows the return of my wrist rotation.

Fingers

Wrist

The Full Cancer Story Thus Far

Please forgive the cut and paste, but here is my journey so far through this nightmare known as Inflammatory Breast Cancer.  I am still struggling through the right sided paralysis and wish I had the energy and time to re-write this but right now I don't.  So here it is, my situation in a nut-shell, lol.

I am not the type of person to pour my heart out or put my personal business out there for everyone to see on Facebook or the internet. My hope is that if I share the story of what I am currently facing in my life that it may help someone in the future to be more proactive in taking care of their health.

 

I was diagnosed at 33 years old with stage three inflammatory breast cancer and invasive ductal carcinoma of the right breast that is HER2 protein positive. I know that’s a mouth full, but it boils down to an extremely aggressive form of cancer that unfortunately while being classified as rare really is not all that rare, rather horribly misdiagnosed at the expense of many women‘s lives.. Women as a whole are taught to believe that you don’t have to worry about developing breast cancer until later in life, after all they don’t even recommend yearly mammograms until the age of 40 and over. Additionally, we are all told that having children and breastfeeding reduces your risk for cancer as well. And we all know that breast cancer lumps are never painful, right?

 

Well, here I was at 33, a mother of an eight year old daughter whom I breastfed for eight months just diagnosed with an aggressive form of breast cancer; it can happen to anyone at any age! More importantly I was told at a young age of 17 that I had fibrocystic breast syndrome, which again by the way they say is in no way related to breast cancer and that it does not increase your risk for breast cancer. So I have always had lumps that have spontaneously appeared and disappeared throughout my life. While this may indeed have no direct correlation with my development of breast cancer it certainly masked the early symptoms.

 

The lump (invasive ductal carcinoma or IDC) that became cancerous first appeared about a two years ago when I was only 32. As with all the lumps I have had in the past it came up prior to menstruation and was sore. It was nothing really out of the ordinary in the beginning. However, unlike my prior experience with fibroids this one hung around, whereas they typically dissipate within a month or two. However, because of my age and the fact that I have a child, breastfed and the lump was painful, especially prior to menstruation, cancer was absolutely the last thing I believed it to be. So I continued to brush it off. It also didn’t help that at the time I had no health insurance so my hands were tied in that respect as well.

 

The lump increased in size and yet I still wasn’t worried. I chalked it up to my caffeine intake because I know that caffeine can aggravate fibrocystic breast disorder. With school, homework, studying and keeping up with the house an energy drink a day was typically a staple for me. I didn’t start to become concerned about the lump until about April 2010, when I started noticing some pretty strange changes. A second lump appeared, just as quickly as the first and right above the first lump. Again all under the same circumstances as the first and just as painful. I’ve never had two fibroids this painful and in the same area of the same breast before. So even though my concern had risen I was still of the mindset that this can’t possibly be breast cancer, it hurts too much.

 

As time progressed my right breast began swelling. My initial thought was simply edema from my body’s own natural defenses trying to reabsorb the fibroid, after all there were now two. Fairly quickly my nipple inverted and that’s when I really got scared.  I had what I referred to as my angry boob!  My right breast swelled up twice the size of my left, turned bright red, was very hot to the touch, the skin became thickened and pitted like the peel of an orange and my nipple inverted.  These symptoms I now know were the second form of breast cancer taking over my breast.  These are the signs and symptoms of Inflammatory Breast Cancer or better known as IBC.  IBC is highly aggressive and often misdiagnosed initially as mastitis because the symptoms mimic that of an infection.  The problem is any delay in treatment with IBC is detrimental, by the time you have the symptoms you are already Stage 3, and for those of you who don’t know, there are only 4 stages of cancer.  Stage 4 is the end of the line and with IBC you start knowing that something is wrong right before the last stop on this crazy ride.

So I started exploring options to obtain some form of health care so I could get my butt into the doctor to have it checked. After MANY discussions with my boyfriend, who is the love of my life, we chose to get married so that I could get on his health plan. Marriage was honestly not something that we had really wanted for our relationship because of our own very personal beliefs on the subject and we had decided long ago that we were happy to spend the rest of our lives together without that piece of paper. So it truly was a huge decision and required a lot of careful consideration, I think more on my part than his. He had made the suggestion and it took me some time to agree. But in the end his argument won out, in order to make sure I was healthy to spend the rest of our lives together, marriage was the best way to ensure that. He was right and with every day that goes by I can’t help but think he is my gift from God for the good things I have done in life.

I began a very aggressive chemotherapy regimen in September of 2010.  I completed my chemotherapy in January of 2011.  All of my post chemo and pre-surgical scans showed that I had a complete pathological response to the chemo meaning it did what it was intended to do, kill all the cancer cells!!  So, I was given the go ahead for surgery and had a bilateral mastectomy on February 18, 2011.  Even though I only had one breast affected by cancer, I wasn’t taking any chances and wanted them both gone!  I have 2 very important reasons in my life to fight this tooth and nail every day.  My now 9 year old daughter and my husband, whom without, I wouldn’t still be here to tell you my story!  

Six weeks went by after surgery and then I began what I thought was going to be one of the final phases to this journey, the radiation.  With IBC, since the cancer has invaded the skin there is no sure way to get it all even with surgery.  Radiation is a must to help ensure the success of the treatment.  I had 28 daily radiation treatments aimed at my right chest wall, lymph nodes in my arm pit and neck and a bolus that helped to push the radiation more towards the skin level as well.  My final 5 treatments were “boosts” directly to the scar line itself, for a grand total of 33 daily radiation treatments, Monday through Friday with only Saturday and Sunday off.  Radiation treatments have a cumulative effect, meaning you don’t notice much in the beginning but by the end and even after treatment stops you continue to cook so to speak.  My last treatment was on May 11, 2011.  It took about a month for my skin to fully heal after my last treatment.  The radiation for IBC is very harsh since so much of it is aimed at skin level.  I suffered through full thickness 2nd degree burns that entailed complete skin sloughing, weeping, drying and then cracking with every twist and turn across a square foot and a half of my chest.  Not a pleasant experience to say the least, lol.

Because the type of breast cancer that I have is HER2 positive I had been on a medication called Herceptin.  I began this medication with the second chemotherapy drug Taxol back in October of 2010.  This drug is considered a biological modifier and is supposed to train my body to attack any cells that over express this protein.  Typically, Herceptin is given for one year.  So I was due to be fully complete with treatment this coming October and was beginning to start considering plastic surgeons for reconstruction.  Planning on returning to school this Fall to finish my final pre-req class and entrance exam to apply for the Nursing Program in the Winter.  Looking for a part-time job and getting back to my life!  This where I was in my life and what I had come through in the past year just to have everything turned upside down again on August 29th, 2011.

I fell Monday, August 29th,  while trying to put the mixer in the cabinet above the refrigerator away.   Prior to my falling on that Monday I have been having some balance issues and a few others as well, all of which I was working on appointments for to address.  When I fell, I immediately lost all feeling in my right leg and arm.  I did hit the back of my head, but not that hard I thought, my butt seemed to take the brunt of the impact.  After giving it a few hours I decided to wait until Tuesday to go to the doc because some of the feeling had come back, it was improving, but I still could not move my right leg.  Went to see my doc Tuesday who sent me directly to the ER.  

 

Head CT showed a lesion on my brain suspicious for metastatic disease.  MRI of the spine showed no lesions, but apparently I have two bulging disks in my lumbar spine.  Guess that explains all that low back pain!  Head MRI shows a 3.1 cm tumor in the Left Parietal Lobe with focal necrosis indicative for metastatic breast cancer.  It also indicated a much smaller tumor as well located very close to the larger tumor but deeper.  So had a craniotomy on September 2nd to remove the primary tumor in the left parietal lobe  followed by a targeted dose of radiation directly to the area where the tumor was removed along with radio surgery/SBRT for the smaller cerebellular mass.  They are going to go after #2 with radiosurgery/SBRT because of it’s location and it’s small size.  The neurosurgeon said it would be less invasive and less damaging to the cerebellum.  So I guess this now all makes me Stage IV Inflammatory Breast Cancer, words I was really hoping to not say for several more years, not one year after my diagnosis.  What can you do though, but keep fighting the good fight!

 

I am still unsure on how much this is going to take a toll on me, but I can imagine it’s going to be a rough road ahead to say the least.  I spent a total of 25 days in the hospital and will continue to need rehab, for how long I don‘t know, or how long it will be before I am able to drive again, or clean the house but I can say this I can use all the prayers and support that you all have to offer to help my family get through this.  It’s not going to be easy.  For all of my friends who live close by, please try to give Jay a call in the next few weeks and see if there is anything you can do to help.  This is going to be a lot for him and unfortunately there is little I can do to ease his burden other than to call it to the attention of all of you and ask that you offer a hand where you can.

 

Through all of this, my daughter, Skyelar, started back to school on the 7th, her first day of 4th grade.  Jay, my husband, went back to school that same day as well to work on his BSN and started a brand new job on the 19th of the month.  He really has sooo much on his plate already and it will help me to get better faster if I’m not so worried about all the added burden and stress on him. Thank you all so much already for your prayers and words of support, they really do mean so much!

Exhaustion!!

September 25th 2011

I apologize, I feel I left rather abruptly my last posting.  I was very tired and had reached my  limit of typing for the day.   Unfortunately, I am feeling quite run down again today.   I am hoping to be closer to full speed by the end of the week.  Of course, I always place very high expectations on my own activity levels.  This is probably the hardest adjustment for me in all of this. I start my new chemotherapy medications on Monday.  I am hopeful that I should be feeling well through them for the most part.  My body handled the dose dense Adriamycian/Cytoxan fairly well.  From what I recall I only had one episode at the very end of A/C where my body became neutropenic.  So I am hoping that my body will do well through the oral chemotherapy medications.