They Never Said It Would Be Easy

I am in New York at the end of my second day here, sitting in my hotel room, emotionally and physically exhausted. I was supposed to start chemo today. I did not. Instead, I have been on an emotional roller coaster. Yesterday I spent the afternoon at Sloan getting my baseline tests for the clinical trial–an echocardiogram, a CT scan and blood work. Today I was to meet with Dr. K. and then start chemo. I was told he was talking to folks about my tests and there would be a short delay. That was the first sign that perhaps this would not go smoothly. Then, he came into the examining room and told me I was qualified except my echo showed a blood clot in my heart at the bottom of the port. If I had to be on full strength blood thinners to resolve this, then I would not be eligible for the trial. He was waiting to hear from the hematologist about this. He told me the clot was big. I knew then I was unlikely to qualify. I was right. Instead, he said that I had to be on full strength thinners, could not do the trial and there was no reason to do the chemo at Sloan. I agree.

To add insult to injury, I was then told I had to inject anti clotting medication into my stomach twice a day. Really???  That is just great. Yes, I am being sarcastic.

The nurse came in with the syringe. Showed me what to do and I did it, quickly, trying not to think about it and literally plunging in. She seemed surprised by how fast I did it, without hesitation. I just wanted to get it over with. My stomach still hurts at the injection site, because I bruised it by going too fast.  I have learned my lesson. I have to do another one tonight. I suppose I will get used to this, but for now I am not looking forward to this. The nurse told me that they had prescribed one week’s worth of the blood thinner, whose name, by the way, is Lovenox. The name does not fit. It is not lovely. Love does not belong there. According to Dr. K., I will have to do this the whole time I am on chemo and maybe afterwards, although at some point I could be switched to a pill. More good news.

While this was going on, I e-mailed Dr. P’s office at Karmanos to bring them up to date. They responded immediately, told me it was a small bump in the road and they would set me up for chemo early next week. They have already called in a script for the not so lovely Lovenox along with a chemo appointment Monday.

The rocky road was not over. We went to the Sloan pharmacy to fill the script. They said they had computer problems and it would be three hours or so before we could fill it. We went to get the film of my echo. We were told we had to go to Sloan’s main building at 66th street (we were at the outpatient building on 53rd) and order it there. When we got there we were told it would take an hour. At this point I was at the edge of tears.  The tears came when we met my friend Lynn for lunch. Lynn happens to be in New York to see the ballet this weekend. We had planned to meet for lunch and to see the exhibits at MOMA with her.  I called her four times to change the time to meet, because of the running around I had to do at Sloan.  We finally met her at Mozarella & Vino on 54th across from MOMA.  That was the highlight. We sat in their back courtyard. The food was authentic northern Italian. Great lunch. Great company. Unfortunately much of the time I was e-mailing back and forth with Karmanos to get all of the arrangements made for next week.

After that short interlude for lunch, we walked back to the main Sloan building where, as promised, the echo cd was actually ready. Then we walked back to the 53rd street facility to the pharmacy. That did not go smoothly. We get there and are told our insurance will not cover that location, so we are out of luck. At this point, I am frantically trying to reach our insurer, and am in computer voice program hell, putting in number after number, answering computer question after question with no person in sight (I never spoke to a real person). In the meantime, Alan, my normally laid back, sweet husband, who never threatens anyone, lost it. For the first time in the 30 some years we have been together he told the pharmacists we are lawyers and he threatened to sue if anything happened to me. I could not believe it. It brought to mind a mother bear protecting her cub. That did the trick. They then said they would give us six doses to get me to Monday and would send us a bill we can send to our insurer. It was now 4:00 pm. Other than lunch and walking to both facilities, our whole day had been dealing with the news. No chemo. Just the thrill of sticking myself with a needle. And like my stomach cancer, I was told that developing a clot as a result of the port is rare but it happens. Being told yet again that I am a “rare” case simply adds to the emotional toll this day has taken.

So, we will have dinner tonight, enjoy tomorrow and be back home on Sunday. The news is a mixed blessing. While I wanted to be in the trial, I also so wanted to be home. The problems we faced here just prove how much more difficult it is to treat out-of-state. Dr. P. called this a bump in the road.  It felt more like a very large boulder, but I think it was meant to be that I treat at home, with my family and friends and a pharmacy that WILL fill my scripts. Home sweet home, here I come.


7 thoughts on “They Never Said It Would Be Easy

  1. Therese samarco says:

    Oh Marilyn, I am so sorry you are going through this. I know how much you wanted this chance to be involved in this trial. I can’t help but think that maybe the comfort, love and familiarity of being home and getting treatment will also have a healing effect. And, less stress. Traveling is stressful. Love you. Sending healing and positive thoughts to you and Alan.

  2. Susan says:

    Ohhh… Don’t even know what to say . I am sorry you had such a weekend. Sometimes karma kicks in and maybe you were meant to be treated at home . It actually may be a weight lifted off. You have an incredible support system at home and maybe this is a higher being saying this is where you should be. You are in our thoughts and prayers .

  3. Becky Rebec says:

    Oh, Marilyn – I know it had to feel like a boulder. You really wanted to be receiving your treatment at Karmanos, and someone listened. Unfortunately, it wasn’t easy getting there, and that hardly seems fair. Enjoy the rest of your stay in NY, knowing you will now be able to have your friends and family surround you during your treatment process.

    • Just wrote a new blog about today,which was a lovely day. Called it “Erasing The Bad” Need to proofread but the internet connection here is about to expire. so will likely post it tomorrow after I get home.

  4. Jill Wheaton says:

    It sounds like a terrible day but know that you brought a smile to my face picturing Alan going all “Shirley MacLaine”/ “my wife needs her medication!!” on a pharmacist. That man REALLY loves you!!

  5. You have a great Man by your side ( ALAN )lucky to have him as my brother in law and the system is sometimes broken and it’s makes us all mad so we all truly understand your frustration and it takes courage to share your emotions with us but your are a blessing to us all and maybe God is using you to help us all make it thought this sometimes broken World ! Keep moving forward and remember we all love and support you now and forever and May God continue to help heal you and the Family !

    Take it a one day at a time ! Love you–Your Brother Phil and Family

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