The Fun Begins

It’s the middle of the night, and neither my husband nor I have been able to sleep.  January 10th, he was diagnosed with squamous cell carcinoma head and neck cancer. On February 14th, he had surgery to remove a large tumor from lymph glands on the right side of his neck. This week, he begins seven weeks of chemotherapy and radiation. This will be the most intensive phase of treatment.

A week ago, a surgeon inserted a port into the left side of his chest. The port is a tube that empties out into a vein near his heart, with a reservoir that creates a little bump under his skin. The port will be used to insert the chemotherapy drugs through a needle directly into the bump, where they will enter his bloodstream. The port can also be used to draw blood or deliver other medications. It’s designed to save wear and tear on smaller blood veins, such as those in the arm.

This past Wednesday, nurses and the anesthesiologist used the port during a procedure to insert a feeding tube through the muscle wall into his stomach.  Unlike some other facilities, this hospital routinely inserts the PEG, as it’s called, before a patient has radiation of the head and neck. Patients undergoing the radiation are generally unable to eat by about the third week. Malnutrition is a real danger for cancer patients in treatment, so the PEG is a prophylactic measure.

Back at the hotel, six or seven hours after the insertion of the feeding tube, he developed extreme pain up and down his side. We contacted the on-call nurse, and she recommended we go the the emergency room. He was too miserable to consider walking out to the car, but not quite desperate enough to summon a screaming ambulance and be carried through the lobby and out the front door on a gurney. After a couple of hours, the pain meds finally kicked in.

Between these two procedures, technicians measured him and used his latest CAT scan to custom design his radiation mask. He will be able to breathe through the mask, but he will not be able to move, as it will be screwed down on to the treatment table to allow precise targeting of the photon beams. Fortunately, he is not claustrophobic.

Because he’s a guy, he had one of the techs take a picture of him in the mask, and at his request, I am sharing it here. Don’t show it to small children. He also made them promise he could have the mask when treatment is done.
Dempsey mask2The gold standard of treatment for this type of cancer is surgery followed by seven weeks of radiation, five days a week, with simultaneous weekly doses of chemo, usually Cisplatin. Patients who’ve been through it describe it as brutal.

After extensive research, we have confidence in the doctors here and their recommendations. We are convinced by the data that this treatment regimen provides him the best chance of a complete recovery. Still, there is tremendous irony in knowing that I arrived in Phoenix with my big strong husband feeling absolutely fine, and in order to cure him, they are cutting him up, pouring toxic chemicals into his body, and burning the skin on his neck and the delicate membranes of his mouth and throat.

His immune system will be so compromised that we will need to avoid crowds or anyone who may be infectious. The radiation causes symptoms from acute pain to exhaustion, and may cause difficulty with swallowing, dry mouth or excessive mucus. The side effects may persist for months.

On the positive side, the oncologist promised us that with the regimen he uses for chemo, severe nausea is the exception rather than the rule. He adds two powerful anti-nausea drugs that are given along with the Cisplatin. The infusion takes four hours, but if it performs as promised, it’s worth it.

We have also met with the pain medicine specialists. They take patient comfort very seriously, and gave us a wide range of possible methods for addressing the effects of radiation, as well as Dempsey’s remaining muscle and nerve pain that are effects of the surgery. We’ll meet with them regularly throughout the treatment period.

Speaking of prophylatics, we’ve been told we will need to use condoms; although chemo drugs are not present in saliva or perspiration at a dangerous level, they are excreted through other bodily fluids. I turned 70 last week. I can’t wait to see the expression on the face of the drugstore clerk when I make that purchase.

We’re both pretty traumatized by all this, and sobered to know how much is still ahead of us. We get scared and we cry, but we are coping (as are all the people we’re meeting on this journey).

We use a lot of humor. The other day at breakfast, Dempsey said, “There must be a lot of really bad people in the world this could have happened to, instead of us.” I’m not sure that was entirely in jest.

We pray. We feel the energy of all the people who care about us, and are praying for us.

We practice a lot of gratitude. We are grateful we’re going through this together. We’re grateful for our families who’ve been so supportive, for our children and our three nieces we helped raise, and all our grandchildren (some now probably horrified by my reference to old people having sex).

We’re grateful we have the time and financial resources to access good medical care. We know how fortunate we are. We’re grateful to see the word “curative” written in his treatment plan.

We both believe in setting our intentions and manifesting the circumstances in our life. Obviously, we didn’t consciously manifest cancer, but we are trusting this is in our lives for a purpose we may later see more clearly. For now, our intention is that Dempsey gets through this treatment as comfortably as possible, with an entirely positive long-term outcome. We are spending time visualizing him present for family milestones. We are writing down the things we intend to do and enjoy together, once he is well.

And strange as it may seem, we are focusing on joy. We have great joy in our relationship, and we make it a point to extract the most joy we can out of every moment, and every experience. One thing we know is that we attract from the point at which we vibrate. The present is the moment we have, and joy is the future we want.

 

 

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8 thoughts on “The Fun Begins

  1. Dearest Jillian,

    Thank you so much for sharing your journey with us and for reminding us of the importance of staying in the joy. Sending you both love and continued laughter and courage as you travel this road together.

  2. Hey Jillian –
    Great job of explaining the process to everyone on what is happening to Dempsey and you. You are truly a great writer! Love the pic of Dempsey in the mask – his humor is intact, I see! Love you both and sending prayers for peace, healing, and transformation. Thank you so much for sharing this journey with all of us who love and support you!
    Love
    Cyndy

  3. Dearest Dempsey and Jillian……your strength and attitude inspire me. I feel so grateful to have you both as friends. I am so confident that you, Dempsey, will make a full recovery…..and then, we have a bridge to cross in Poughkeepsie. I am so looking forward to that day! Sending you both many hugs and much love. And Dempsey……kick some ass, will ya 😠😊😘❤

  4. God bless you and Dempsey. I love your upbeat focus! It indeed has a profound effect to Dempsey’s recovery. The pain and discomfort he’s experiencing have you considered Rick Simpson cannabis oil? It’s excellent for pain. My brother has GBM tumors in his brain, (most aggressive cancer), the tumors morph exceptionally quick and the swelling causing headaches as did the radiation… upon a extensive amount of research we provided him cookies laced with RIck Simpson cannabis oil. In a federally-subsidized hospital (cannabis is prohibited) the nuerosurgeons all knew and were supportive; they saw the cannabis having an excellent response. The meds for pain were no longer needed; his severe headaches were all but eliminated (rare) and his appetite improved.

    May your journey continue with joy! Godspeed!

    If you have any questions or an ear to listen, I’m available via Facebook instant messenger. 💜

  5. Thank you, Glenda! I wish your brother well, and I’m so glad you’ve found relief for him. Yes, we have been doing lots of research into cannabis oil. Because we’ve been in a medical cannabis state for long-term treatment, I’ve learned a great deal about its uses in healing. I hope at some point the federal government will join with so many states in making it available to all patients.

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