I Made it to the Couch Today

by Debbie Twomey on July 15, 2017

 

I was hoping to be writing a positive or funny blog this week but just getting this one written has taken me 2 weeks. I was so excited to be off the “red devil” that I let go of the possibility that I could have other side effects that were just as bad as the sickness and constipation. Silly me.

I am now on my 3rd round of my newest chemotherapy cocktail (Heceptin, Taxol and Perjeta) and as was expected, I get the terrible side effects. I have had serious diarrhea for over two weeks now and no sign of letting up despite the Imodium I am taking to counteract it. My new normal is waking up (when I manage to fall asleep which is still a major issue), getting sick to my stomach so my Ondansetron and Prochloperazine, and Young Living Peppermint with Digize roll on are always right next to my bed and waiting till they calm my stomach. Then it is a mad dash to the bathroom for the first of at least three and up to seven episodes of diarrhea. Sound fun?

I start to feel human about 1-2 in the afternoon after I finally stop and get to shower and face my day. Luckily, I got to attend a family picnic last Saturday because the runs stopped about 1 pm and I had a free afternoon, free of that drama anyway. I got to see my siblings and let McKenna play in the pool with her cousins. It was like a vacation for me. And of course the next day I was out for the whole damn day but it was worth it.                                 

My reality is not the same as others going through the same treatment plan. We all have different side effects but the other ladies I have met lately usually only have the general fatigue or as we call it—bone tiredness. I just happen to be one of the fortunate ones who has to experience all of it, I am just so thrilled with it all.

 

 

Here is what just one of my drugs do for me * marking my side effects.

The most common side effects of PERJETA when given with Herceptin and docetaxel for treatment of breast cancer that has spread to other parts of the body (metastatic) are:

  • Diarrhea *
  • Hair loss *
  • Low levels of white blood cells with or without a fever
  • Nausea *
  • Feeling tired *
  • Rash *
  • Damage to the nerves (numbness, tingling, pain in hands/feet) *

 

I am now on Gabapentin for the neuropathy in my feet (where it is the worst) and for the first time in weeks I can lay down and not have the severe pain and numbness but of course it comes at a cost too. There is some controversy surrounding this drug which they want to classify as an opiate because addicts are finding ways to get high with it. Well, addicts are finding a way to get high with cocoa but you ain’t seeing me give that up to them. This is working for me and I am not an abuser so I resent any interference with its success for myself. I have so little that helps me right now.

Some of the more common side effects that can occur with use of gabapentin include:

  • Dizziness *
  • tiredness or drowsiness *
  • loss of coordination
  • fever
  • jerky movements
  • nausea and vomiting *
  • trouble speaking
  • double vision
  • unusual eye movements
  • tremor
  • swelling of legs and feet

The RA is still dominating my joints and if I do not take the Predisone it will do the same to my lungs. I do not take painkillers and even if I did, because of the addicts, having it prescribed takes an Act of Congress. I would rather avoid but I am not thrilled that the options are taken away because of the rampant addiction culture we are now in. For me, having the choice of using painkillers short term should not be prevented because of the actions of addicted people but it is.

You know as I read this back I see I now find myself on many drugs which I had hoped to avoid. I always read the labels and wanted to stay away from those drugs with so many serious side effects and stick to holistic options. I use my oils religiously and eat healthier when I can eat. I add supplements and drinks that provide the vitamins and nutrients I am losing being so sick but it is not enough. And I know I kind of went into panic mode when I got my diagnosis because I have heard successes and not so successful stories utilizing one or the other or even both methods of treating cancers.

But, I know my mind and my heart and my goal is to be here so I chose to fight with the drugs they presented because I want to fight this battle well armed. I have a little girl depending on me and every night I pray that all this will get me to a quality of health that allows me to enjoy McKenna as much as possible and eventually be back to my normal self and plan many special outings with her and her baby sister Leah. Disney World comes to mind.

For now, feeling as crummy as I have lately, some days all I can say is “I made it to the couch.!” On those days I wonder if I am doing all I need to in this battle. I do not want to get discouraged and lose sight of the long term goal—no more cancer. And then Disney here we come after which I would love to go to Hawaii and just chill on the beach and visit dear friends. But for today, the couch looks best, just sayin’.

 

 

Live, Laugh, Love

Debbie

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The Nitty Gritty of Chemotherapy

by Debbie Twomey on June 27, 2017

 

                                                                           

Boy I wish I could get off this roller coaster it is making me so sick. But, if I want to beat this cancer I have to try and stay with the protocol. First the “red devil” cocktail and then the chemotherapy my oncologist chose specifically for my type and stage of cancer.

Let me tell you, that red devil is named appropriately. I thought the week I had such vomiting and nausea was rough but little did I know. As my sister Karen is fond of telling me, I really had no idea and could not be fully prepared for the side effects I have experienced. On June 1st I had my 3rd of 4 rounds of this toxic concoction. Then the shot of Neulasta the next day. From that point on things went downhill rather quickly.

I experienced difficulty breathing which is pretty awful since I already have Pulmonary Fibrosis. I had to take breathing treatments and my inhaler for the next 3 days. I wasn’t sure what the hell was going on but it turns out Neulasta was the culprit.

Neulasta (pegfilgrastim) is a man-made form of a protein that stimulates the growth of white blood cells in your body. White blood cells help your body fight against infection.

Neulasta is used to prevent neutropenia, a lack of certain white blood cells caused by receiving chemotherapy. Common Neulasta side effects may include:

  • bone pain, muscle aches;
  • pain in your arms or legs; or
  • pain and redness where the injection was given

Though rare, some of Neulasta’s serious side effects include acute respiratory distress syndrome (ARDS), severe allergic reactions and fatal splenic rupture.

My breathing calmed down by Sunday morning (I get my shot on Friday) but for 2 days my heart felt like it was racing and breathing was even more labored than usual. It was not an auspicious start to my week.                                           

The fatigue and nausea was now pretty much 24/7. It was mild nausea that could be calmed with my meds and my Young Living roll on of Digize and Peppermint. But the smell was not easy for me so I had to plug my nose to put it on. I thought this was enough, I mean I am in bed quite a bit while McKenna is at school and even when she comes home I am on the couch. I try to catch sleep any time I am able but even with the chemo fatigue I am only averaging a couple of hours a night if that.

This should have been enough for me to deal with but as is my luck, things only worsened. I now had constipation pretty severe. I already take Miralax and drink lots of water because of the fissure I dealt with last summer. Only now it had returned along with the hemorrhoid which are both quite painful. The oncologist added Colace and Lactuluse to my daily regimen.

Prior to getting those meds I tried the natural approach. My neighbor and friend Rebekah suggested foods and supplements to aide in digestion and adding the necessary water for my organs to work properly especially my intestines and colon. I researched all the best foods and ate those I could tolerate which were mostly vegetables like cauliflower and broccoli. I ate these and added as much fiber to my diet as I could. But the constipation persisted.

I know this is not a topic people like to talk about but it is what I am dealing with and so I am addressing it. For over 3 weeks I have been I agony. I am exhausted, I am nauseous and when I get to go to the bathroom it is so painful I cry. I cannot sit so I have to lie on my side and it is only by late afternoon that I can even function without serious pain.

I feel so weak and tired I just want it all to end. But wait folks that just wasn’t enough to deal with, not for this girl. I had pain on my lower lips that I had attributed to the pain of losing my hair. I know this is a gross subject but it is another aspect of this disease and chemotherapy that I knew nothing about. Since the hair on my head hurt to lose I thought it must be the same for all hair. So when I had acute pain and swelling down below, I thought I just have to deal with it. I used hot packs and cold packs and special creams to relive the pain and burn. It was like a band aid, it covered the initial pain but it did not heal the problem.

I actually thought I may be exaggerating the symptoms or that the pain could not be as bad as I thought. I mean I have gone through so much maybe I am just so weak any pain seems severe. I did not even tell my doctors soon enough because I thought it just cannot be as bad as I feel.

Well, I was wrong. It turns out I have a very serious bacterial infection and it just so happens to be affecting my genitals. How nice is that? I am enflamed as a result of my skin breaking down and chemotherapy is doing that to me. My Rheumatoid Arthritis infusions lead to weakening my immune system and my getting yeast infections as well as MRSA. Now the chemo is wreaking havoc once again on this poor immune system and I got this infection.

But there is a light at the end of the tunnel. Because the chemo is doing such damage to my body I did not have to get the last treatment. Can we say Halleluiah? If I could have danced out of the oncologist’s office I would have. No more of the red devil, I was ecstatic.

I am now on a very strong antibiotic and special cream to help heal the infection and it is working. So that pain is now being relieved and I can concentrate on getting more fibrous foods in me to help digestion and elimination so maybe soon that issue will be gone. I can deal with quite a bit but not so much at once. I am only human!

I just returned from my doctors and the infection is really going away so in 10 days I will begin the chemo treatment I was originally supposed to and I do not even know how many, but I think at least 9. Then not sure about the plan of attack, my brain has lost those tidbits.

I did not have to receive that last terrible chemo medication so I was taken off of fever watch which means I got to have a salad finally after 7 weeks of having to avoid fresh fruits and vegetables. And I ran right to Wendy’s and got their new mango/strawberry chicken salad. It was delicious, a perfect reward for some of the pain I have had to face.

You never know one day to the next where your cancer will take you or how chemotherapy will affect you. So you have to be prepared for the unexpected, good or bad. Just so happens these last few weeks it was mostly bad with a little good. I’d like to say it made it all worth the pain but that would be ridiculous. Still, I had a bright moment in all the darkness and I am grateful. Just saying.

Live Laugh Love

Debbie

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It’s Just Hair

June 12, 2017

Tweet It’s only hair—you know who says this the most? Those people who are already losing it and have to accept, those who never liked their hair anyways and those who think bald is beautiful which may be mostly males.  I know many women in chemotherapy say this too because they know it is inevitable […]

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The Blessings of Cancer

May 22, 2017

Tweet My last few blogs seemed a bit discouraging so it probably seems hypocritical to say there have been many blessings with this cancer diagnosis, but that is the Catch-22 of this awful disease. I am not trying to garner pity but put a very realistic face to a disease that we had hoped would […]

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A Day in the Life

May 13, 2017

Tweet Once again the idea I had for this week’s blog will have to wait. It was about the blessings of a cancer diagnosis and yes, there are blessings you never knew. But this has been a rough week and I want to share the moments for one major reason; so when all of this […]

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Insurance Impediments!!!

May 5, 2017

Tweet What the hell— my insurance company has high jacked my chemotherapy treatment! I am so livid that I do not even know how to begin this blog. My gripe is regarding the insurance companies’ power. It is out of control. In the 1980’s I was part of a group who lobbied in Albany NY […]

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Fuzzy Cancer Brain

April 30, 2017

Tweet Anyone dealing with cancer of any form knows what I am about to write is so very true. We are bombarded with advice, well wishes (please do not take this as a negative because it is so welcome), information, tests, treatments and endless APPOINTMENTS. If we are fortunate we have partners that will help […]

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Cancer Speak

April 22, 2017

Tweet  I am learning a new language at this late age of my life. No it isn’t French or Spanish, it is Cancer Speak. This is a language and use of terminologies that I only knew at a surface level and to be perfectly honest, never wanted to know more. I was content to know […]

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Queen of Complications

April 13, 2017

Tweet      Well, one waiting game is over just as a couple more begin. I have discovered that this is typical but a bit more complicated because of my other diagnosis and let’s face it—my rotten luck. My Invasive Ductal Carcinoma (IVD) is Stage II which is pretty decent news considering how large the […]

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Time on My Hands

April 6, 2017

Tweet     It has been 10 days since I had my lumpectomy and all is going well. I have to be super vigilant because of my MRSA so I will not be out of the woods on that front for another 4 days. If I do not have an infection it will be the […]

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