Here’s a partial list of what the past seven days have entailed;
- A trip to the Mayo Clinic
- A meeting with Dr. Gita Thanarajasingam
- A high fever & heart rate led to an admission to St. Mary’s
- A hard ride home (car rides have become difficult…)
- Hair loss = Head Shaving
- Increase of pain due to metastasis of back tumor
- Decrease of pain due to increase of pain meds
- Mouth sores = Thrush = new meds = healing mouth!
- A fall in the rain = twisted ankle = no big deal!
- A decision on where to get my chemo treatment = Mayo!
- Realization of true auxiliary costs to be in Rochester for treatment
- GoFundMe to raise funds for accommodation during treatment
- GOAL ACHIEVED of GoFundMe (Thank you, everyone!)
As you can see, it’s been one of the busiest weeks I’ve had since my initial diagnosis on July 23, 2018.
Which was six weeks ago. Which blows my mind.
I know it’s an old saying that life can change in an instant, and a diagnosis is NOT a life change. The change had been happening slowly over the past months/year as the tumor in my spine had been growing, as the Lymphoma had been blooming like a forsythia branch across both sides of my chest. And the past six weeks has been more than an “instant,” it’s been — well, six weeks.
Six weeks have never felt both as long, and as short, a span of time as I’ve experienced. This week feels like a change in my recovery, though. It feels like a point where I realize that I MUST take the reins, that I must be the captain of my own ship, and this makes me a bit scared, but also very strong.
Who knew that fear and strength could live so comfortably together.
So today, with my early morning appointment to double check whether I will require a transfusion THIS week at St. John’s Cancer Center, will be a kind of ‘rest’ day. It will be a chance to see the Chemo nurses who have been SO amazingly wonderful, to thank them, to discuss with them that I may be getting my Chemo down in Rochester.
I know that no one is invested in my staying at St. John’s, I know that the most important thing is that I get the absolute BEST treatment for my own body. Avoiding a future relapse is my #2 priority. (#1 is beating this Lymphoma and going into remission)
I think Mayo will give me the best option to reach outcomes #1 & #2.
Yesterday I discussed this with my Radiational Oncologist at St. John’s, and she assuaged a bit of my — guilt? — at my ‘breakup’ with St. Johns. I know this is the wrong way to consider this decision, but it does feel as though I’ve spent six weeks with one team, who has worked hard to get me to a plateau stage where I can even consider beginning chemo, only to move on to a different care team.
No, I definitely don’t feel GUILT, but I DO want St. John’s to know how grateful I am, although at times it was a rough gratitude, for their care and hard work for me.
I try hard NOT to be a worrier. I try to deal with worries in an intelligent manner, working through what it’s possible for me to affect, and what is beyond my power, and just deal with what can be dealt with. It’s the same way I try to deal with guilt and shame, my mother used to say, “If you feel guilty, fix it. If you feel ashamed, apologize.”
It sounds simple — and I guess on one level it is — but it’s not EASY.
Nothing about this has been easy.
I have worry about Gerry and his heart. Right now his OWN cancer treatment is kind of on hold while we deal with his two heart attacks in March, and it seems the way that we’re ‘dealing’ with the heart condition is to — just sit and watch it? He stopped his cardio rehab after another heart pain incident this Summer, and it hasn’t been started again, but it’s something that really WAS doing him a great deal of good.
So on Thursday when we return to the Mayo we’ll be there for TWO reasons. As discussed above, I’ll be meeting Dr. T to discuss chemo treatment for my own cancer, and we’ll be visiting Dr. H (Gerry’s Hematologist) to talk about his OWN Multiple Myeloma, where he is with his numbers, how HE’S looking and what the next step is in HIS recovery.
I will always be Gerry’s caregiver. Gerry WANTS to be mine, but his health isn’t allowing that. Every day I’m so grateful that we have Andy to step in and fill in the gaps Gerry and I are leaving in each other’s lives, but that is NOT a fair place to put Andy in for a long haul. And I’m hoping this is NOT for the long haul. Thursday will be a big day for all three of us.
Thank heaven for Andy.
Aside from my appointment today, and some yarn wringing out that I’m going to wrangle Andy into doing for me, today is a REST day. No walking, no trips, nothing but sitting on my butt, knitting, watching some TV and RESTING.
Yesterday I attended a support group meeting, a very lovely group of women who all have Stage 4 Cancer diagnosis. However, I don’t feel the group is right for me at this time — I’m a bit ‘group shy’ right now and want to avoid the chance of infection
(several of the group members were coughing and sneezing yesterday.)
With two doctor visits and the support group, I was absolutely SHATTERED with exhaustion yesterday, today is Resting Wednesday.
I need this.