Two Weeks Post Mastectomy/Hysterectomy

I’m a little over two weeks out from surgery. It’s been…a million things, and all those things are still flying around inside my head and hard to sort. I think I’ll write a future post filled with the details for those who might be interested, BRCA mutants like me. For now, though, here’s how the last two weeks have generally gone for me:

First, it was harder than I thought it would be. At one point, as I walked hunched over from my bathroom to my bed four days after surgery, I said to my sister, “I can’t fucking believe I chose to do this.”

It wasn’t the nicest thing to say to my sister, because she is following me with the same surgery next month.

Seven years ago, I had an emergency c-section—the slicing open of my abdomen after it had been constricting on and off during 13 hours of labor. That was pretty painful. My abdomen was extremely sore and bruised and it was hard to pull myself up to sitting for about three weeks.

In my head, I’d compared this surgery to that and I was oh-so-wrong. A double mastectomy is like having Alex Rodriguez take a swing at your chest with a metal bat. Seven times.

I knew the surgeon would open the breast, scoop out the cancer-susceptible flesh, and insert an expander—a sort of placeholder, since I’d chosen not to do full reconstruction at the time of the surgery.

What for some reason I did not know is that the expander is placed under the muscle. I’m fairly small-boned and small-chested, which meant the surgeon had a difficult time pulling the muscle out enough to insert the expander. My surgery ended up taking about two hours longer than usual. I can only imagine, fortunately, the slicing and pulling that was required. No wonder Alex Rodriguez came to mind afterward. (There has been almost no pain from the hysterectomy.)

After the Surgery

I’m hesitant to rip apart nurses because nurses are in my family and, mostly, nurses rock. However, 75% of the nurses working on the 3rd floor of Unnamed Hospital in Highland Park, Illinois from November 4-7 did not rock.

By, “they did not rock”, I mean:

  • I was allowed to remain in severe pain the entire first night of my stay. They had me on no medication save the morphine button in my hand, which I was allowed to push every ten minutes. But since it was, you know, 2am and the previous day I’d had major surgery, it was hard to stay awake to push the damn button. Whenever I did wake, in severe pain, I was told, “You’ve got to push the button to stay on top of the pain.” When my husband and I got angry enough, the nurse finally called the surgeon to get me more medicine.
  • Unfortunately, the same story continued the next day with a different nurse. The new medicine was prescribed to be given every six hours. But by hour four, I was in a good amount of pain. I was told, “Sorry, you need to wait two more hours.” After two rounds of this, again when we got angry enough, she called the surgeon.
  • One nurse put on gloves, typed on a computer, then came and inspected my incisions with the same gloves.
  • I told that same nurse that despite the catheter, I had the very uncomfortable feeling that I needed to pee extremely bad. She sort of shrugged and said sometimes that happens. So I endured the sharp pain in my bladder for an hour until the nurse came back, this time with another nurse. I told that nurse of the problem, she looked at the catheter, discovered it had a kink in it that was stopping all the fluid being pumped into me through an IV from exiting my body, and fixed the problem.

But possibly the most troublesome thing about the last two weeks is that I awoke from surgery with worse vision in my left eye, accompanied by severe headaches and slight nausea about every other day. We’re not sure if this is caused by the lack of hormones, the medications (I’ve tried a few), or the surgery itself. TBD.

All of this sounds like a lot of bitching. Some days, I am pissed. But most days, I’m happy to have the surgery over with. I’m thankful I had the choice to take a big step to prevent me from getting cancer. I feel grateful for the notes and flowers and pumpkin breads and soups and cookies that have been sent to my house.

And I feel deep love from my family. My whole family has been helpful—mom, dad, stepdad, sister, brother, in-laws, aunts, uncles. But there are always standouts, right? The two standouts in my story are my mother and my husband.

My mom, balancing her work bag, her change of clothes, and my daughter's laundry

My mom balancing her work bag, her change of clothes, and my daughter’s laundry

My mom has been at my house almost every day. I was out of my mind for awhile on all the narcotics, but now that I’m more with it, one of the pleasurable side effects of major surgery is that I can sort of feel like a child again. She doesn’t let me get up from my comfy chair. She takes the kids to school. She makes me breakfast. Of course, I have to chat an awful lot with her, but that’s been nice, too. (Love you, Mom.)

Every day for two weeks, my husband cleaned my drains, administered my several medications, helped me shower, brought me everything I needed, reached for all the things I couldn’t, woke with me in the night when necessary, and took care of all of our children’s needs at night and in the mornings and during some parts of the day, too, as he also worked from the dining room table. He did all of this without complaining to me one time. Not once. He never huffed or snorted or rolled his eyes or breathed deeply. He didn’t pause in rising to help me up, in retrieving Chapstick, or bringing water. It turns out there’s a lot you can’t do after a double mastectomy, and he did all of it for me.

I’m trying to think of a joke to make because that’s what we do–if it gets too serious and emotional, my family jokes. But I can’t think of one. So just a big thank you and I love you to Alex, who turned out to be the best nurse.

Alex coloring with Clara while I recovered

Alex coloring with our daughter while I recovered

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45 thoughts on “Two Weeks Post Mastectomy/Hysterectomy

  1. I have been thinking of you every day! I hope you feel better soon! Hugs (gentle ones) to you and BIG hugs to your family for taking care of you! Love you Jessi!! Please let me know if there is anything I can do for you!

  2. This truly brought tears to my eyes, Jess. Your descriptions are vivid and your pain and anguish palpable. It doesn’t (AT ALL) sound like bitching, and I’d be pissed too…about everything. I’m horrified by the nurse stories (that are unfortunately similar to experiences I’ve had in hospitals), and I’m so sympathetic to not being able to do anything post-surgery. It’s so hard but so comforting to be taken care of when you can’t care for yourself. Your family and friends sound amazing, and your deep love for them is also palpable — Alex especially, very moving to hear of such a strong, abiding marriage. Please add me to your list of friends sending (virtual) goodies, hugs (gentle), love, and wishes for all to smoothe out over the next few weeks. xoxo

  3. Wow, moving piece. Sending you well wishes through what sounds like an extraordinary ordeal!! Glad you have a rockin support system at home. Advocating for oneself in hospital is never fun nor easy – sorry you had that experience. Thanks for sharing this.

    • Thanks so much. It’s true–it’s hard to advocate for yourself as the patient even if you think you will beforehand. There’s so much going on and you’re in pain and half-drugged… I think it’s important to have someone with you.

  4. Oh Jess. Not bitching at all. Such super valid feelings. I am so sorry that this has been rough and so glad that you have all your helpers there with you. The picture of Alex hunched over the table coloring is precious. Sending virtual hugs your way- although I guess hugs probably hurt- good thing then that this one is virtual!

  5. Jess, I’m so glad you’re on the mend and are able to share all of this. You and your family and your wonderful mother and husband are so strong. I’m thinking of you and sending hugs and wishes for a good day today, and better ones each day to come. xoxo

  6. Jess. Thank you so much for sharing your experience and I’m so thankful you’re lucid and moving through such a difficult process with such a positive attitude.
    As an RN, what I hope people take away is the following:

    1. Always bring a sharp friend or family member to pay attention to the post-surgery details like pain management, sterile precautions, etc. It’s sad, I know, but as our practiced nursing population is aging out of the system and newer, less-practiced nurses are coming in, the lack of sufficient financial backing has caused a severe lack of proper training for post-grad nursing staff and no compensation, time or incentive for older nurses to train properly New nurses flounder, tenured nurses are slammed and blamed, mistakes are made and we all suffer. The system is broken and needs fixing. The hospitals here in Southern CA are starting to pay attention and spend the $ necessary to fix the problems. I’m sure it’s happening elsewhere. I’m so sorry you were the recipient of such poor care. I’m so sorry for all of us. We have GOT to fix this.

    2. Pain management is IMPORTANT to healing. Less pain=faster healing time! This fact is getting more airtime as old “fight the pain” methodology fades with education.

    3. Mastectomy is one of the most painful surgeries and needs proper pain management attention. I had natural childbirth, I was in a catastrophic motorcycle accident as a kid where my knee slammed into the headlight of a speeding truck and I’ve had a nasty biking accident with spinal injury and I can vehemently state that mastectomy hurt more than any of it!!!! As a cancer survivor I went through mastectomy with pretty much the same story. I was shocked by the lack of understanding in the medical community. Truly shocked! Six months after my surgery, while working on a Med/Surgery floor as an RN, I heard a nurse tell another that a woman was “being a baby” about her mastectomy pain, one day post surgery! Trust me, I dressed her down. My experience was life changing enough as a patient, but I took that experience of pain with me as an RN to educate. We really need to educate. Thank you for sharing your experience.

    4. People need to understand that after this surgery it will take, on average, a full six months to “recover” from the surgery. Anesthesia brain, the pain, the trauma to your body and the healing experience all take time. What you’ve gone through is much more invasive than a C-Section. You may still experience pain six months from now. Please prepare your mind and body for this and develop resources to support you( ie: meds, exercises, meditation, physical therapy, support group, artistic outlets)

    5. Lastly, having a support system, like your Mom, husband and family to bolster you post-surgery is the most important aspect to proper healing. The power of love and prayer is more powerful than anything.

    NOTE: If someone reading this has to go through a similar experience without this kind of support, please reach out to your church, a support group or develop a roster of friends who will care for you on a schedule. Sometimes we need to encourage or even train our friends to nurture one another. Remember that allowing another person to care for you allows an opportunity for them to strengthen spirit.

    Sending you love, peace and healing energy, Jess. You are a warrior!

    • I am so glad you wrote that reply, Dylan. I hope people read it. I will pass it on to my sister and mother, who are also having the surgery. You’re exactly right and thank you, also, for the validation.

  7. Oh, Jessica. Don’t for ONE SECOND feel like you are bitching too much about your hospital experience. Nursing negligence almost killed my sister and her unborn twins last March. I have been there, I have seen what happens, and patients need to hold hospital staff to higher standards. We come from a culture of reverence for hospitals. Unfortunately, that faith sometimes equates to misplaced trust.

    Your health requires more than reverence to maintain–it requires competence, or dare I say, EXCELLENCE. Some nurses are excellent, but far too many are not, as shown by patient care stats these days. Once you are through this, give your feelings the proper channels. Write the hospital board. Demand a better experience for other patients, like your sister. You are not being a pain–you are being an advocate, because only so many of us can be.

    I’m so happy to hear you are on the mend, although I’m sorry it was more difficult than expected. You can do it. 🙂

    • Thanks so much, Melanie.
      I plan on contacting the hospital. It’s been interesting–I knew about the important of having good nurses and one reason I chose these surgeons is that they said their hospital sees a lot of my surgery and so the nurses will be knowledgeable. That’s part of what sold me on this medical group. Well, the day of my surgery they had no room for me on the women’s floor and so floated me up to the 3rd floor, where the “leftover” patients go they can’t find space for.
      The best laid plans…

  8. Like Wendy, I’ve been thinking of you EVERY day, Jess. You are such a trooper and so very strong. Keep it up! You’ve done the hard part (but your baseball bat descriptions made me CRINGE). Ugh — I’m so sorry you’ve been through such pain and with such incompetence regarding the nurses (my mom went through the exact same thing with her care during surgery. Grr!) Hugs!

  9. Wow! What an ordeal. You are so brave. I’m glad you are home now and have your family there to help you. When my mother was in the hospital before going into hospice, the nurses were so rude to her and uncaring. We too had to get mad to have simple good care provided. So I understand what you were going through. Sending lots of healing thoughts your way.

    • Thanks so much, Deborah.
      This story feels much too common, and I know the elderly especially have the worst of it. No industry is perfect, but our employee review standards must be much too low or nonexistent.

  10. Your pain is maddening, heartbreaking, and so incredibly unfair after everything you’ve been through. I continue to offer my prayers for your full healing, strength and peace of mind.

  11. That sucks, Jessica! From the baseball bat to the pain in your eye to the shitty nurses. But so glad to hear your at home care is about as kick ass at it comes. Soak it all up as well as all the nap time. I would say you deserve every second from you’ve been through. xOx

  12. Wow, I’m really sorry that you had nurses that didn’t get on top of your pain. Your PCA (patient-controlled analgesia) pump not only should have had demand dosing (where YOU push the button) but also a basal dose (continuous dose spread out over an hour) of morphine as well.

    Many surgeons who initiate the PCA pump only write orders for demand dosing — meaning the patient has to be awake enough to give herself the medicine by pushing the button herself. They do this for a couple of reasons — many people are opiate naive — meaning they don’t take opiates on a routine basis and don’t have a tolerance to opiates which could easily cause them to be over sedated.

    They are numerous cases where the set-up on PCAs for a continuous dosage has been too high or too much for the patient to tolerate and the patient has become unconscious suffering brain damage and sometimes death. Some nursing units require that patients be on oxygen and have their heart rate and pulse oximetry monitored while on PCAs to alert for over sedation.

    The goal of PCA is to make one comfortable enough to move around and make pain tolerable, but not necessarily make it go away completely. Often PCAs are managed through the anesthesia department.

    They may have wanted to change your pain medication for morphine to dilaudid. Dilaudid is often superior to morphine and more people tolerate it better than morphine. BUT with all this said your pain should have been managed much better than what you are describing!

    When you informed the nurse that your pain was not being managed and you had to wait TWO more hours she should have tried other pain relieving techniques on top of the ineffective opioid you were receiving — like icepacks, (re)positioning, deep breathing, distraction and any additional non-narcotic pain meds that could have been given like Tylenol or Toradol.

    The PCA keeps a record of how many times you push it and if it’s over a certain amount of times, the physician (or nurse practitioner) in charge of pain management needs to adjust your settings to better control you pain. You don’t ever have to wait 10 mins to push the button, but need to press it as many times as you need to even if the lock-out interval only delivers medication every 10 mins. A record is kept of ALL button pushes.

    About the gloves and typing issue … what that nurse did is to set you up for infection. Hands need to be washed BEFORE and AFTER gloves are put on! She should have never been typing and then touched you with gloves like that. That’s VERY sloppy nursing care and puts your health at risk. Your incision site is a very serious thing and needs to be protected from germs as much as possible. You have EVERY right to ask anyone taking care of you in a hospital to wash their hands in your presence. All you have to say is, “I didn’t see that you washed your hands, would you mind washing them? I’m just being proactive in keeping myself from getting an infection.” Anyone who gets angry or defensive should reported to their charge nurse or above. Hospital infections are serious and lengthen patient stays unnecessarily.

    In regard to your urinary catheter, the first nurse should have tried to problem-solve the uncomfortable catheter situation, not simply chalk it up to “that’s the way it is.” Because that’s not true … a patient should be made to feel as comfortable as possible.

    In June I got to experience my own batch of bad nurses with my care and then in September with my dad’s care … and I’m a nurse and they all knew this! I’ve never seen such sloppy care and wonder if many patients throughout the US are getting this lackluster care? I’ve very disappointed in my profession when I see this and also blown away at the same time. As embarrassed as I am by this lack of professionalism, I admit that what you are saying doesn’t surprise me and I know you are in no way exaggerating your care — or lack of.

    And you’re right, not all nurses are created the same. I’m sorry you had to experience ALL of this.

    I hope you got your left eye checked out and/or it has returned to normal. Depending upon the position your were in surgery and in some cases with anesthetic reaction, a loss of vision, although rare, can occur. If your eye isn’t back to normal right now as you read this I would make an appointment ASAP to have it checked.

    Anyway, I’m glad you survived this whole ordeal and that you have a loving, caring and supportive family to help you through this!

    Hugs,
    Elizabetcetera

  13. This made me tear up a little. I can’t imagine what you’re going through, especially with two little ones in the house. Many positive thoughts being sent your way, Jess.

  14. Jess, you’ve been in my thoughts and prayers for days, as I keep an eye out for updates. I’m not good at this (dealing with anything hospital related when it involves ppl I care about). This gene, and cancer in general, immediately frusterates me. So all of this–especially hearing about your pain–is hard, but the compassion and support you’re receiving from your mom and Alex…. I loved reading that. Praying the pain continues to be transmuted into more and more love, strengthened bonds and a renewed sense of self. ….Sending xoxos…

  15. Jess, I’m so sorry you’ve had such a tough time and so many bad experiences piled one on top of the other. You are very fortunate to have the family and friends who are so willing to step up and do what needs to be done while you are recovering. I am praying for a speedy recovery for you. Sending hugs your way.

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  18. I am so sorry Jessica. Wednesday will be 3 weeks since my double mastectomy, and soon I get to start chemo followed by radiation followed by reconstruction. Woohooo. Anyway, your words have shown such a true picture of the pain. I thought the same thing around day 4 (why did I do this to myself? why didnt I just get a lumpectomy??) The pain was so severe….still there but getting better everyday. Of course I havent had the tissue expanders filled yet which scares me, but I guess once I”m through I will be better off for it…..cancer free w/some new boobs? silver lining I guess….

    • I’m very sorry to hear you’re going through it. I’ve said often I can’t believe there are woman who have to do this with cancer on top of it all. There are a few silver linings, but even those take getting used to, I’m finding. I’m all finished with reconstruction and even though they’re “better” than they were, they aren’t mine. I’m still getting used to them, and hoping I eventually forget they’re even there. Best of luck to you – you made a good choice; there are better days ahead.

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