Blood Clots, Hospital Stays & New Medications

It’s been one hell of a week.

Last Thursday I was scheduled to fly to NYC to meet with my plastic surgeon to receive the second injection of fluid to expand my left breast tissue in preparation for my implant.  Instead, I ended up in the hospital in Ohio with a blood clot to the lung (otherwise known as a pulmonary embolism).  Scary shit!

In the days leading up to my hospitalization I’d been feeling pretty crappy, but I just chalked it up to the cold I was fighting and side effects from the Herceptin.  But things got worse.  All of a sudden I was out of breath just reading bedtime stories to Miss M.  I couldn’t lay down on my back to go to sleep.  It hurt like hell to take a deep breath.  I has a persistent scratchy cough.  I knew something was wrong.

Rather than take a “wait and see” approach and risk something horrible happening on my flight to NYC, we went to the local after hours clinic to get it checked out.  The doctor there said my lungs sounded OK but feared it may be a blood clot so he sent us to the emergency room.  After a bunch of tests, some blood work, and a very painful CT scan it was confirmed that yes, there was indeed a blood clot in my lung.  Luckily, it was small and we caught it early.  Immediately I was put on blood thinners and admitted to the hospital where I stayed for the next 3 days.

Of course I never imagined I would be at risk for blood clots.  I exercise daily.  I don’t smoke (anymore).  I’m not overweight or sedentary.  You never think these things will happen to you – until they do.  But apparently I have many of the risk factors for developing blood clots; a history of cancer, an intravenous port in my chest, and recent surgery immediately followed by an extremely long drive from NYC to Ohio.  So there ya go.

The good news (other than the obvious fact that I’m alive) is that my oncologist Dr. K is taking me off both the Herceptin and Tamoxifen.  Which is great, because I was just about to tell him that I no longer wanted to take the Tamoxifen anyway.

The bad news is that I now have a whole new host of minor health issues to worry about.  I will be taking blood thinners daily for the next 6 months (maybe longer).  The new meds don’t seem to have any seriously scary side effects but they do cause me to bruise all the time and put me at danger for excessive bleeding.  I have to be über careful not to fall, get cut, or hurt in any way.  Even a strong bump or whack against a heavy object (or attack by a energetic 3 year old??) can cause major internal bleeding that I may not even be aware of.  If I was cautious before because of my surgery scars, now I feel like I should be wearing a protective suit everywhere I go.

We also discovered two other potentially scary health issues from my time in the hospital…   Neither of which are confirmed but are to be monitored and re-tested in the months to come.

One, was a small spot on my liver that showed up on my CT scan.  It may be cancer.  It may be nothing at all.  When I did my CT scan at the hospital I was in a ton of pain and couldn’t lie down properly, stay still, or hold my breath when they wanted me to.  So the entire scan may not be accurate.  Regardless, we need to follow up on that with an MRI.  But I can’t do an MRI right now because of the expander that is in my breast.  Apparently it has some metal in it that interferes with the MRI.  So we’ll have to wait a few months until I get my implant in and do the follow-up scan.  They did check my liver functioning while I was in the hospital and said it looked great.  So for now, I’m just gonna assume all is well with my liver.

The other potential health issue is that my blood work was slightly elevated for an autoimmune disorder – Lupus Anticoagulant Syndrome – which causes thickening of the blood (and subsequently puts you at risk for blood clots).  To be clear, this doesn’t mean that I have Lupus.  They are two separate issues.  And we won’t even know if I actually have LA until we do another blood test (that must be taken months after the first test).  Plus, it seems lupus anticoagulants are often found in people taking antibiotics (of which I’ve been taking a lot lately), those who have cancer, inflammation, or infections.  So I’m hoping it is just related to my recent surgery and will be gone by the time we test again.

Despite all these health issues, I’m still feeling pretty good.  The blood thinners have taken away the pain and allowed me to breath easy again.  My energy is good.  My appetite is fine.  I’m healing from the mastectomy and gaining increased range of motion and strength in my left arm and chest every day.

Dr. K says I should be able to go to NY next week to meet with my plastic surgeon.  So that’s the plan for now.  But I haven’t booked my ticket just yet.

I am realizing (yet again) that I can never truly predict what will happen from day to day.  Any minute a new issue may arise.  And I am having a difficult time adjusting and accepting this new normal.  Because even though I may have long stretches of time where I’m ‘cancer free’, the reality is that metastatic disease often brings with it endless treatments and medications with endless complications and side effects and endless scans and tests to monitor it all.  My health is no longer something I can take for granted.  I can no longer just booze it up, eat whatever I want, and abuse my body like other people can.  I have to pay attention to every ache, every pain, any slight change in my body.  I have to be vigilant in my self-care and self-love.  I have to be informed about treatments, medications, and procedures and constantly weigh the benefits against the risks.

This is not an easy journey.  I’m pissed that this is my new normal.  I’m sad that I can’t just live my life in blissful ignorance.  I’m still trying to figure out the lesson breast cancer has come to teach me.  And still have many days where I just feel sorry for myself, and for my husband, daughter, family, and friends.

But I will never give up.  And I will never stop fighting.  I will not let cancer ruin my life.

Love to all.  – T

28 Responses

  1. You didn’t say whether or not you went home with a visiting nurse, or are you managing the Coumadin\blood thinner injections/ PT\INR levels yourself?

    • No visiting nurse service. Hubby is giving me my once a day shot at home. And I’m having my blood levels monitored with the finger prick test at my oncologist’s office. So far it’s been working out fine. And I should be done with the injections by the end of the week anyway.

  2. Wow. Who the heck painted that big bullseye on your back anyway?! So sorry to hear it’s been such a tough week for you, and at the same time I’m glad to hear you are coming out the other side of it. I’m also glad to hear the doctor is dialing back on some of the drugs that have been causing such rough side effects. Hopefully things will be more comfortable without them.
    This current blip may be affecting outlook as well. By that I mean: keep in mind when feeling overwhelmed by your situation, that the inability to take an easy, full breath can play tricks with your brain and emotions too. Not just because its scary & painful, but due to lack of O2 & other imbalances as well. I speak from experience as I am lying here recovering from a nasty bout of pneumonia!
    Also, I see many patients who are on massive doses of blood thinners & while they certainly have to be careful & aware they manage very well. The cautions and warnings can seem extremely frightening initially, but they manage a perfectly normal life all the same. Hang in there my friend. Big bunches of love to you & the family.

  3. Teri,
    Sending you happy and healing thoughts. Since my rediagnosis I have embrased many different ways of healing. I have changed my Life Style 180 degrees and I will continue to live the rest of my life fighting for the love of my children, husband and family.I would like to give you some information that I am so grateful that was passed on to me after one of my surgeries from a nurse at Mass General Hospital.” she said dont lose hope there is an accupuncturist that has been known to help many people with advanced cancers. His name is Tom Tam. He is a master of healing. He has helped me in more ways then you can ever imagine. I dont want you to feel pressure in any way but if you are interested in looking him please google his name and or Tong Ren Therapy…..Be well and Take care ……all my best Marie

    • Thanks so much for the tip. Acupuncture helped me get through chemo and I know I will turn to it again at some point. I greatly appreciate all advice, tips, and words of wisdom and personal experiences that are shared. Keep on fighting Marie! Sending good vibes your way, – T

  4. Dear Terri,

    I’m kind of an old fogie when it comes to e-communication–better at the kitchen table over tea, or even e-mail. But I want you to know I’ve been reading every blog post from the beginning and streaming metta to you and all of your family. I’ve been witnessing the depth and honesty with which you’ve been sharing your experience and reflections. And I’ve seen you develop in the complexity of how you hold this monstrous thing that has entered your life. Yeah, the personal is political, physical, spiritual, relational, so multi-dimensional. It sounds to me like you have the capacity to love, laugh, rage, weep, as you find your way through this, shining the light of awareness on your experience.

    (And as for Miss M, the melt-downs and hissy fits must be really hard for you all, but it’s energy that must be released in a safe way–better than shutting down! Sounds like you’ve been connected to some excellent resources.)

    So glad your docs were on the ball, and this blood clot issue is being dealt with!
    May life give you many simple moments of love and beauty to buoy you up as you continue to navigate the treacherous waters.

    Much metta,

    • Kate I can’t thank you enough for all that you’ve done for our family. Your beautiful spirit, support, and kindness is amazing. Your support means a lot. I hope you & Michael are doing well & enjoying all that life has to offer. Big warm hugs, – Terri

  5. I’m so glad you got to the hospital quickly and that the clot was caught in its early stages, and that the treatment has addressed the pain and breathing difficulty. Hoping and praying for islands of peace and spaces for breathing and calmness in the midst of all the uncertainties and anxieties.

    And what’s wrong with feeling sorry for yourself and your loved ones, anyhow, I’d like to know?? Feel what you feel, not what you’re “supposed” to feel. If you find self-pity unlovely, then buy it a new bonnet and suggest it dress itself up to make the most of its assets — Much love for you and your whole loving family (and a lot of anger at whatever it is in the Universe that is sending this new pile of c-crap in your direction) — John

  6. Wow – that was an awful and ugly surprise for me to read – and so I can only imagine how awful it must have been for you!

    I think you’re right that you’re going to have to become more body aware, and more self-loving – but I’d also guess that it’s not always going to be this scary, because you’ll learn more as you go along.

    I mean, now you know what it feels like when something awful is happening in your lungs, so next time, you’ll know the signs earlier, plus, you’ll probably catch at least one or two colds, and learn “okay, but *this* is just a cold.”

    But yeah – in the moment? It’s a heavy burden.

    BTW: Stevie, above, raises a *really* good point – anything that affects your body like this can cause an overall feeling of depression. Please keep an eye out for this and be aware that if your brain is slipping into this direction, it will muck with your thoughts and feelings a bit. Recognizing “I feel awful and useless because I’m sick, not because those are legitimate thoughts” can be a huge help in keeping one’s head on straight.

    Here’s hoping this is the last ugly surprise for a while – and best wishes for a swift recovery. Hugs offered….

    • Thanks for your suggestions. You always seem to have helpful insights & thoughts. I have been feeling down lately and recognize that it’s likely because of all the changes my body is going through (and the lack of exercise since the surgery). I know from the experiences that you’ve shared, along with those of my loved ones with depression, that its a complicated and difficult thing to deal with. I’m already seeing a therapist weekly & that helps immensely. Hope you’re feeling better these days. – T

  7. What a pain in the boot! Wretched roller coaster…

    One thought: vitamin C deficiency (scurvy) results in bruising and bleeding gums, and C strengthens blood vessel walls. It’s a stress vitamin, so when you’re ill and have had surgery, you’re on toxic drugs, and there’s mental and emotional stress as well, you need more – probably a lot more.. If you take a little too much, your gut gets gassy, which can let you know how much you need. It doesn’t work by causing clotting, so should be safe, and you’re going off chemo. Vitamin B complex is also stress related; mouth canker sores can be a sign that’s too low, as well. So says my dentist, and it’s certainly true for me.

    I love the previous comments, and also counsel: *Bitch* a little! Ya got it coming! <3

    • Thanks for the Vit C recommendation. When I did blood work at the Block Center in Chicago in July it showed my Vit C levels were low so they upped my dosage. Maybe I’ll up it a little more. I had stopped taking all my vitamins & supplements around the time of the surgery. And am just now reintroducing them & adjusting for the new meds I’m taking. So we’ll see.
      Thanks as always for your support & encouragement Elizabeth. And I would love to scream & swear more (before Miss M came along I had a very big potty mouth). Instead I’m venting on the blog, crying a lot more, and doing this new yodel/scream when I’m in pain. It seems to be working and Miss M loves it when I yodel :-)

      • Lol! Sounds to me as if you’re doing awfully well, under the circumstances! And, with a certain sense of style ;-). Remember we can take anything you need to dish out!

      • Remember that RDAs are just above levels at which gross symptoms of malnutrition occur, not optimum levels, and they vary greatly between people, and at different times. Thus the mention of bowel tolerance. Excessive amounts can cause kidney irritation, but they don’t have to stay that high forever. A veterinarian told me animals, who make their own, churn out unbelievable levels when stressed.

  8. PS. I favor major ranting, all-denominational cursing, and really creative foul invective. But then, I don’t have a three year old daughter… 😉

  9. I am so sorry you have to be going through all this. Why does breast cancer have to bring on all these added issues?? I am a survivor and was very fortunate not to have had all these side effects. My granddaughter is fighting leukemia and she had to fight off a clot in her head this summer, complications from one of her meds. You are such and inspiration, hang in there and know that so many people (many you don’t even know) are right by your side!

    • Thanks Regina. Sorry to hear about your granddaughter. It sucks how all the treatments we do to save our lives end up causing so many horrible (and sometimes life threatening) side effects. Wishing you & your family all the best in your own cancer journeys. – T

  10. Terry, although I have dealt with breast cancer two times, it was a piece of cake in comparison with what you have already encountered. You are a strong, unselfish, graceful woman warrior!!! Keep up the good work in kicking cancer’s ass!!!!You take the ups and downs. You feel what you need to feel. You cry, laugh,smile,get angry…whatever it takes.

  11. I’m sorry to hear you had additional challenges this week. Feeling down and sorry for yourself is totally understandable. Fighting cancer and the secondary healthy issues takes all your reserves. It’s HARD to feel good about yourself and your life when you are tired and sick. Be gentle with yourself.

    • I heard a story yesterday, that might get you to thinking differently. A young man, 18 years old, began having troubles with his jaw aching. His mom took him to the doctor. He was found to have cancer in his jawbone. He was an argumentative youngster, but had nothing to say. The medical folk decided that all his teeth should be pulled, because they might cause the cancer to spread. Because it was small and isolated, he finally agreed.
      The result was NO CANCER. The doctor told him one important fact: if he got himself smacked in the jaw again, the cancer was likely to return. So Mr. Disagreeable had to learn to NEVER let anything get him into a fight again. This required an overnight and huge change of his personality.
      He is now in his late 40’s. The cancer never returned. As this was awhile back and treatments were not as good as they are now makes it even better He’s also turned into a surprisingly pleasant young man.
      Life IS change, whether we like it or not. Looking outward, as you’ve clearly discovered, keeps you from becoming too introspective. And it also effects your depression possibilities big-time. Remember this boy and think more about the rest of your life, not this part. You’ll enjoy everything in a new and wonderful way.
      Look outward. Enjoy the day. And ALWAYS remember you are not alone in this kind of trouble. It improves your courage.
      And always enjoy whatever you can. Lee

  12. Another cancer story: Jack Klugman who literally lived for his ability to act, got cancer of the throat. Though he survived, he lost his voice entirely. In his book, TONY & ME, he discussed the problem of being a survivor with no voice. At the request of others and dreaded the whole thing, he attended a public meeting for cancer survivors. At the end of the day, he loved every person he met there. He pointed out that “None of the people who approached me that day…had used the pronoun ‘I’. Not one came up to me with self-pity or complained about the way THEY felt or looked for ME to save them. On the contrary every single one of those people, EXCEPT ME, was thinking about someone else! In that instant, I knew what it meant to be a cancer survivor.”
    You know that, don’t you?

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