And The Fight Goes On

I had my last chemo in October 2016 & had been in remission since June 2017. On May 8, 2016 I had my regular three month CT scan which showed lymph node activity in my abdomen. A PET scan was scheduled for May 30th. I had a mammogram on May 17, 2017 & it came back abnormal. I followed up with an ultrasound on May 22nd. Luckily it came back normal. The concerned areas were dialated ducts. I had the PET scan done on the 30th & met with Dr. Clark (radiation doc) to go over results. The scan showed metabolic activity in several areas including abdomen (3), left collarbone (1), liver (3). He also determined that the areas involved will not allow me to be a candidate for radiation. My next appointment with my fabulous oncologist, Dr. Rich, was June 5, 2017. During this visit we discussed my options & set up a care plan.

So… I have a couple of options now that radiation is off the table. Option #1: They can put me in a clinical trial with an immunotherapy drug (Keytruda, Opdivo, or similar class drug) at Huntsman Cancer Hospital where the data collected from my case would go into the clinical trial. I would receive all of my care through Huntsman in SLC, UT (2 hrs one way from where I live). Option #2: I can receive the same drugs as in the clinical trial at Utah Cancer Specialists (my current doctor & clinic) in Provo, UT but not be in the trial & not have my data collected. I would more than likely receive the drugs free of charge through the drug company, maintain the excellent standard of care with the people I have been comfortable with for the last 3 yrs, be an hour closer to home, & open my spot in the clinical trial for someone else who may not have another option like I do. Option #3: Immediately start chemo & reduce the chance of it working in the future.

After giving this a lot of thought, careful consideration & discussions with my family, I have decided to go with option #2. The process has begun as my doc is sending a sample from my original tumor to the lab for genetic testing. They will be looking for several different things including targets which will determine what type & how much of the drugs will be required. I will call in two weeks to see if my results are in, make an appointment & begin treatment once they get approval from the drug companies & my insurance company.

20170605_112727.jpg

A Little Time

The quiet moments that come to give you a little time to think are valuable in a way that nothing can compare to. Where there’s a difference between thinking & feeling, between knowing & guessing, between existing & just Be-ing.

Chronic illness is one of those things that consumes your life & the lives of those around you. No matter how much you don’t want it to or how much you resist, you have no control over it. The key to living with something so powerful is to not let it break you. Take it one step at a time.

Finding your new “normal” takes a little time. Reading your body & listening to what it’s telling you is an important part of daily living. Just like with anything else, managing is more beneficial than trying to control.

I think that one of the harder parts, at least for me, is thinking about before I was diagnosed & comparing it to after. I was sick & didn’t “know” it for quite some time before my diagnosis. So much so that the lines in my mind are blurred & I really cannot definitively say when I started “feeling” sick. I do know it’s been a very long time since I’ve felt well & just did normal things that I enjoyed. I miss that.

It’s not even the disease that is the worst. In fact, I wouldn’t even think about it if it weren’t for all the meds & their side effects that are a constant in my life that force me to.

I accept my illness for what it is. I accept that it is part of who I am. I choose to live my life learning from it & not being consumed by it. It is what it is & I am who I am. My diagnosis does not define me. Namasté

IMG_20160422_203306

I Am You

Early morning stillness is where i find my peace. The family & furbabies still asleep. A gentle cool breeze coming through the window. The sounds & smells of spring outside. All of these things brings my soul to a place of reflection & sometimes tears. Not years of sadness or of pain but of relief & release. Everyone needs this kind of soul cleansing whether they are in tune enough with themselves to know it or not.

This is when I reflect on the things that been going on around me, of how things have changed & of how grateful I am for every moment.

I’ve been in remission now for less than a year. I have my three month CT scan coming up in a couple of days. I always get “scanxiety” when this time comes. Even though I’ve been in remission now for just under a year I don’t expect the anxiety that comes with the regular scans will ever go away.

Having metastatic cancer is emotionally taxing. Remission is a wonderful thing but but just knowing the cancer is there waiting to rear its ugly head & throw you right back into fighting for your life is mentally & emotionally exhausting.

Physically I have good days & I have bad days. At this point the good outweigh the bad. I know I will never be 100% back to the way I was before my diagnosis, I have accepted that. I don’t live my daily life comparing the old & the new me. I’m in the place in my life I am meant to be. This is me. The me I’ve fought to become, the one I can look in the mirror & be pleased with the person looking back at me.

Living with an incurable disease, regardless of the nature of the beast, takes a lot of will & determination. You have to fight, you have to want to fight. Once you get your mind prepared for battle everything else will fall into line.

I will 46 this fall. It’ll be 3 yrs this summer since I was diagnosed with stage 2A2 cervical cancer. It’ll be 2 years this summer since my metastatic diagnosis. I don’t know how long I’ve actually had cancer though. I had symptoms for 2 years prior to diagnosis that I did nothing about. How long before that was the cancer there, I don’t have a clue. Statistically these numbers mean something but honey I am not just a statistic. I am a person who matters. I am an American with a pre-existing condition that the president of the country I was born & raised thinks doesn’t matter. Now not only must I fight for my life on a daily basis I must add the worry of whether or not I will have the insurance needed in order to pay for my fight. $29,000 per month is the ballpark of what it takes to pay for my chemo therapy alone when I relapse out of remission.

My life matters Mr. Trump regardless of whether or not you think it does. ➰🇺🇸

#cancersucks #cervical #cancer #awareness #MedicaidCutsWillCostMyLife #HealthHasNoParty #seriouslyisthisthebestyouvegot

Surgery

I’ve spent the last two years dealing with cancer. Accepting it as part of who I am now. It’s daily influence on my life is exhausting. You make small goals such as keeping hydrated & taking your meds on time. Then there are the major milestones like avoiding surgery if at all possible. So far I’ve done really well with both things I have some control over as well as the things I don’t. Unfortunately I have come to the point of needing surgery.

Luckily the required surgery isn’t to remove anything cancerous (thank you Lord!) but instead it is to help manage the chemo caused blood disorder ITP (Immune Thrombocytopenic Purpura) which has been wreaking havoc in my body for the last year. I am scheduled to have my spleen removed on Sept. 7, 2016 & I’ve opted to have my gall bladder removed at the same time since I have multiple stones & it needs out anyways. May as well get them both done & be finished with it, right?! By having the spleen removed my platelets should stabilize & I will no longer have to be on the high doses of prednisone or the weekly injections of NPLATE.

The plan is to have the surgeries done with robotic laparoscopy. If there are no complications I should be in the hospital a day or two. If for some reason they end up having to do the other way & open me up, I’m looking at 5 to 6 days in the hospital for recovery. I’m not super excited about having surgery at all but I’m hoping everything works in my favor for the laparoscopy. Get me in, get me out & be done with it. I definitely do not want to be in the hospital for a week!

As far as the cancer goes, I’m still in remission (YaY!) My maintenance chemo is currently on hold until after the surgery & some recovery time. I’m good with that though. I could definitely use a break not only from the chemo itself but from the almost 3 hr round trip drive for treatment. There are so many side effects from chemo that it gets to be a little overwhelming at times. Just like with anything else, there are good days & bad days. Thankfully up to this point the good outweighs the bad. My next goal is to avoid anymore surgery for as long as possible. The longer I can keep my organs out of this fight the better. I am incredibly grateful for the fact I have been able to do it as long as I have up to this point. So for now we push on.

Thankful

 

Let It Go

When you live with a chronic illness you get consumed. You get consumed with your daily physical issues & you get consumed with the emotional crap that comes with it. Rarely do you have the time or the energy to let other people’s “stuff” bog you down & it’s easier to let it float right by you. It’s one of the good things in a sea of not so great things that you deal with. But then out of the blue something kind of hits you that you have a little more difficult time shaking. Not because it effects you or even has anything whatsoever to do with you but because it has a direct effect on someone you love & care about.

While you want to be happy for them, and in a way you are, you know that what is happening has the potential to end badly. You’ve seen it with them before but they don’t want your advice on the subject so you keep it to yourself. Unfortunately by keeping it to yourself you are essentially punishing yourself by hanging on to something that isn’t even yours to hold on to.

You see I’m a firm believer that in order to let things go, you have to release them into the universe. You have to acknowledge the situation that is causing the issue, speak your truth about it (regardless of which side you stand on), accept that the issue has been resolved by speaking it, & releasing the remaining energy from it into the universe allowing the chips to fall where they may. This concept has taken me my entire life to learn but it works for me & for that I am grateful.

In a perfect world it would be just that easy with every little thing that bothers me but it proves more difficult when the lesson to be learned at hand isn’t mine. This is where being the slight control freak that I am & an empath has it’s drawback as well. Everyone has their own path to walk & their lessons to learn but as a friend & family member you want what’s best for those you care about. When you can see what is happening, you want to give a little warning to help prevent the crash that is inevitable. It’s difficult to just stand by & let things ride but you have to do it.

This is where the anxiety comes in. It makes you feel like something is off. Your normal (whatever that is) doesn’t feel just right. You spend your time trying to figure out what the hell is bothering you because nothing in your day to day has changed. Physically you are hanging in there & getting by. Emotionally things are good. You are not at odds with friends or family. You’re not mad. You’re not sad. You just can’t put your finger on it.

Then it hits you. It’s this other person’s “stuff”. Stuff you cannot control & maybe actually have no business in. So why let it bother you so much & how do you let it go when you cannot use your “normal” release method? I wish I knew. What I do know is that as a friend & someone who cares deeply, I will be there when it ends. I will be there for them when it’s time to pick up the pieces that will be falling & the mess that is left behind because that is what friends do. I just wish there was a way for them to see the train wreck they are headed in to so they could hit the breaks a little sooner & cause a little less damage but there isn’t.

My hope by putting this here is to provide myself with the release I need to let this go. I’m exhausted from the energy I have been carrying from this & it’s taking it’s toll on me.

let-it-go-tag

The Meds & Their Toll

The meds are getting to me. More specifically, the meds are getting to my head. I have never taken regular medications other than your regular over the counter pain reliever and such. To depend on a handful of pills a couple times of times is frustrating to say the least. In general things don’t bother me much about the cancer & ITP diagnosis’ but for some reason the last couple of days it’s a constant on my mind to the point of irritation at some level.

My main concern is the prednisone. Satan’s tic-tac. That little white pill that is supposed to work wonders on a short term basis. That little white pill that has a shit ton of side effects. That little white pill that gives me a “moonface” & basically makes me look nothing like my “normal” self & gives me anxiety along with several other things that bother me a little less.

I am not a vain person. I don’t put a lot into the way others look either. I believe beauty comes from the soul. Physical attraction is nice but a relationship will never last if there isn’t a deeper connection. I would however like to at least resemble the person I used to be & because of the facial swelling & hair loss I do not. I know it’s just a matter of time before things are back to normal but for that to happen I have to be off of the medication. I haven’t been able to be off of the prednisone longer than a week before my numbers drop to critical levels. So while they are not working as well as we would like they are at least helping me stay out of the hospital.

I know I shouldn’t complain but we all get to a breaking point & need to vent. I can deal with no hair #nohairdontcare I’m just so frustrated looking at these chipmunk cheeks everyday.

On a more positive note… My re-occurrence was diagnosed almost a year ago along with the ITP (Immune Thrombocytopenic Pupura). http://www.ncbi.nlm.nih.gov/pubmedhealth/PMHT0022068/

I have been in chemo since then with good results as I am still in remission (YaY!) All of my medical issues are related to the ITP as of late. As I prepare to finish up my maintenance chemo & enter the watchful waiting period of three months I am getting a little nervous. When I went into watchful waiting last year is when the cancer came back. That doesn’t mean it will come back this time but when you are living with a chronic disease there is always that possibility. I will still be on all of the other medications I am currently on including the prednisone which is mainly for the ITP for awhile. The hope is that once I am off chemo my body will stop fighting itself so hard & will resume it’s normal ability to make platelets. This will be when the prednisone is no longer needed.

It’s all just a little exhausting & my body is just a little worn down. Mentally & emotionally I am good but I’m definitely ready for a break. Here’s a little info to give you an idea of what I am talking about… happy reading!

Prednisone Side Effects

More common

  1. Aggression
  2. agitation
  3. anxiety
  4. blurred vision
  5. decrease in the amount of urine
  6. dizziness
  7. fast, slow, pounding, or irregular heartbeat or pulse
  8. headache
  9. irritability
  10. mental depression
  11. mood changes
  12. nervousness
  13. noisy, rattling breathing
  14. numbness or tingling in the arms or legs
  15. pounding in the ears
  16. shortness of breath
  17. swelling of the fingers, hands, feet, or lower legs
  18. trouble thinking, speaking, or walking
  19. troubled breathing at rest
  20. weight gain

Incidence not known

  1. Abdominal or stomach cramping or burning (severe)
  2. abdominal or stomach pain
  3. backache
  4. bloody, black, or tarry stools
  5. cough or hoarseness
  6. darkening of skin
  7. decrease in height
  8. decreased vision
  9. diarrhea
  10. dry mouth
  11. eye pain
  12. eye tearing
  13. facial hair growth in females
  14. fainting
  15. fever or chills
  16. flushed, dry skin
  17. fractures
  18. fruit-like breath odor
  19. full or round face, neck, or trunk
  20. heartburn or indigestion (severe and continuous)
  21. increased hunger
  22. increased thirst
  23. increased urination
  24. loss of appetite
  25. loss of sexual desire or ability
  26. lower back or side pain
  27. menstrual irregularities
  28. muscle pain or tenderness
  29. muscle wasting or weakness
  30. nausea
  31. pain in back, ribs, arms, or legs
  32. painful or difficult urination
  33. skin rash
  34. sleeplessness
  35. sweating
  36. trouble healing
  37. trouble sleeping
  38. unexplained weight loss
  39. unusual tiredness or weakness
  40. vision changes
  41. vomiting
  42. vomiting of material that looks like coffee grounds

Some side effects may occur that usually do not need medical attention. These side effects may go away during treatment as your body adjusts to the medicine. Also, your health care professional may be able to tell you about ways to prevent or reduce some of these side effects. Check with your health care professional if any of the following side effects continue or are bothersome or if you have any questions about them:

More common

  1. Increased appetite

Incidence not known

  1. Abnormal fat deposits on the face, neck, and trunk
  2. acne
  3. dry scalp
  4. lightening of normal skin color
  5. red face
  6. reddish purple lines on the arms, face, legs, trunk, or groin
  7. swelling of the stomach area
  8. thinning of the scalp hair

Other side effects not listed may also occur in some patients. If you notice any other effects, check with your healthcare professional.

http://www.mayoclinic.org/drugs-supplements/prednisone-oral-route/side-effects/DRG-20075269

What Do You Have To Say

Life’s a little dramatic & a little tragic but what a blessing to have the chance to live at all.

Sometimes one little sentence can say so much. Words are the kind of thing that contain the power of kings, yet are rarely used to their full potential. Communication is such an integral part of healing & dealing with chronic diseases. The use of both verbal & non-verbal communication is vital.

It can be so difficult to get your feelings out in the open & even more so when you are sick. There is the part of you that feels like a burden because of your constant needs so there is an apprehensiveness that comes along with talking about things. Why add more onto your family & friends than they are already dealing with, right?! Well I will tell you why… because it’s important.

People need to know how each other feels. They need to be able to get those feelings out into the open so that they are not being consumed by them. Releasing that energy is healing & therapeutic. Talk to each other. Bond with each other. Let the people in your life know what they mean to you before it comes time to say it at your funeral.

I for one, want people to know that I appreciate them & all that they have added to my life. I think it’s important that family & friends know the importance of their role before & during my illness. I don’t want anyone to feel like I’ve taken advantage of them or wasn’t appreciative of them. Family & friends are priceless… make sure they know.

Thank you card

Medications & Bell Ringing

Never in my life did I think that I would wake up to a handful of medication that’s sole purpose is to get me through until the evening when I would take another handful of medication that will get me through the night… just to do it all over again the next day. When you are sick, ill, unwell, or however you choose to refer to your chronic illness, it all comes down to medication. There is the option of Eastern Medicine or Western Medicine. I have chosen a combination of the two as my strategy. Either way, managing medications & their side effects along with the disease itself is a full time job.

I think the side effect that is the absolute worst for me is the deep bone pain caused by the medication NPLATE that makes my bone marrow work on overdrive essentially. It’s job is to increase my platelet production. I have such bad bone pain anyway from the radiation I had received & then to add the weekly NPLATE injection just really puts me over the top for the first few days after injection. Luckily one of the things that help with deep bone pain is easily & readily available. Claritin. Yep, I said Claritin the allergy medication. I don’t know why it works but it does & for that I am so grateful.

There really is no rhyme or reason for this post today other than I just have a few things on my mind, am feeling kinda chatty, & decided to throw everything together right here. Then in a month or two I will go back & read this while thinking to myself… “What was I thinking?!” LOL

One of the traditions of chemo is the ringing of the bell upon completion & last week at chemo there were two ladies who rang the bell. It was nice to see the excitement on their faces as they stepped up in front of all of us in the infusion room & rang the bell as we clapped for them. It clearly was a milestone of importance for each of them.

For one reason or another I did not ring the bell when I finished my first round of chemo. I was so glad to be finished with it all & it just wasn’t something that I thought about suppose. Thinking about it even now actually gives me a little bit of anxiety. I don’t like to be focused on & that kind of attention makes me uncomfortable. Looking at it from an outside perspective it is clear that it’s not just for the cancer patient who is ringing the bell. It is a symbol of hope for all cancer patients. Who knows… maybe I will ring the bell this round.

1407234553000-piedmont-cancerbell